This World is a School. I heard this line in the song I came across. The lyrics and video capturing so much of my feelings relating to all the experiences that have hurt me so much and all the feelings related to them that are all buried so deeply now, that I don’t think I will ever want to deal with them even when my daughter is well again. Wanting to leave everything behind me and bury things so deeply that I can just live a very quiet and peaceful existence beyond. Where I don’t have to think about any of it ever again. So this is my last post as I look to completely vanish within this world but wishing to thank those people who have read my rambles of real life, that have contained so many of my thoughts and feelings within it. I had always wished to write from when I was young and having this blog felt so exciting. I never envisaged that it would be filled with so much heartbreak. Now wishing to keep all my thoughts and feelings hidden deeply within an ocean, inside a beautiful world that I will create inside myself. A world that I can just disappear into on my own. A place where no one will ever be able to see or hurt me ever again.
I’m all done with painful experiences. This one is ongoing and feels hard to see when it will end, but I have faith that one day she will be well and happy again. She will be the person that lived and loved life. It’s the only thing in life that I really wish for now.
Some days when I feel really tired usually when things are feeling particularly difficult and painful for my daughter, I feel my feelings of sadness rise in me from underneath all my bravado. All the stuff that I can’t actually feel. I wouldn’t be able to function if I felt it. All the stuff that I push down and pretend doesn’t exist because it interferes with what I’m doing. All the sadness that hides behind all the anger and pain and disappointment and feelings of unfairness in seeing my daughter’s condition, and all the things that have contributed to that. Feelings that I can’t feel either. I can’t feel any of it right now. And I don’t ever want to. I can function In this world without feeling it. Numbing all that pain is the easiest way to do that. Rational is the only way for me now. In rational I can stay completely calm in it all. I can do the things I need to do. Until I don’t have to anymore and I can just sleep peacefully forever. I, unlike many others, now look forward to the day that I can just sleep. When I no longer have to exist and battle in this world. Only wishing to be here for as long as possible for my girl. Hoping that one day she will find someone who will really love her in a way that she deserves after I’m gone. I hope that for her so much. I hope there is someone special out there that really knows how to love and will give that love to her.
None of my feelings buried deeply will help me in this or beyond. I certainly can’t fight while I’m crying. But sometimes just in feeling them rise makes me feel better. Just in knowing that those feelings are there even if I feel none of them. Because it reminds me that I do still exist underneath this warrior. That I am still human and I am still me. That I haven’t been completely destroyed by it all. That the same girl that existed before it all is still there hidden away. I think it would be really easy for me to have been completely lost in it all. For my heart to have frozen solid from feeling so much hurt. To turn from love to hate in all the shitty stuff that has happened. But it isn’t and I haven’t. But I’m really tired of it all. Really tired. This world full of so much shit that leaves me wishing I didn’t have to be any part of it. It provides very little for me now other than those few beautiful people that I really love and will always choose to spend my time with. But Love doesn’t turn this world. I see how it is now. My eyes opened widely to how it all works beyond. I don’t wish to be part of beyond. I guess it’s much easier to be full of sunshine and sparkle and smiles and joining in when you’re safe and secure and only looking after yourself. When life feels easier. But not quite so easy when life and this world has kicked the shit out of you. It feels like it has kicked the shit out of me In every single way possible. I don’t want to ever put myself in that position again. It crushed what had existed before. I remind myself constantly that some day it will feel easier again. And that I will feel really proud of myself in how I’ve dealt with it all. And that I will be a much better person for it. And in that, I will try to use that better for something worthwhile beyond. And that inside I will feel sunshine sparkle and smiles again. It will come. I believe and have faith that some day it will come for both of us. But I also know that I will spend the rest of my life now, protecting myself and watching over my girl. To make sure that no one ever hurts us again. Ever!!! I think my heart has taken enough of a battering for one life. I’ll quietly hold on to the remains.
But in this place before I fall silent I found some things that that I will share that felt beautiful. Reminding myself of “some day” and the bitter sweet versions of what love looks and feels like for me. What Love feels like for me in all its pure and beautiful happiness and also in all it’s pain. I was touched very deeply, and for a brief moment I felt the beauty of the dream of love and soul mates, and the sadness and tragedy of this life and death, of love and pain and deep loss. I will always be what I need to be but beyond that I will live in my own little beautiful place that exists inside me. I think I’ve learnt all my lessons in this life and don’t want to learn any more…because yes this Earth is cruel and it really is just a school.
This song showed up on at the top of my utube selection. Does utube read my mind or my blog or does it just select similar tunes to those I am listening to in respect of struggle and fighting and courage and finding “more”. It certainly resonated when I thought about my life’s experiences and especially right now in dealing with such a complicated situation.
Anorexia. A horrific illness that doesn’t sit alongside those other heavyweight physical illnesses where the courage required in fighting it is so very visible and acknowledged. This one often feeling a lot like AIDS during a time of ignorance. Anorexia and other eating disorders sitting in the shadows, in that category of “shameful” as though it is something you brought on yourself. She often says that to me. She didn’t bring it on herself.
I reminds me as I write, that watching Philadelphia was when I fell in love with Tom Hanks as an actor as he played Andrew Beckett. I remember going to the cinema on my own to see it. It felt so inspiring in watching someone’s fight for what is right and just. One of my favourite movies actually. If you’ve never seen it I would recommend it. Hanks and Washington are fantastic.
I loved Lady Di because she made what wasn’t seen, seen. She brought people out of the shadows and to a place where they were seen and felt accepted. The most famous woman in the world who felt so alone in her “gilded cage”. Why do the best ones always seem to die early? I loved that she was so beautiful and kind when I was a kid but I find her more inspiring in what sat inside her, the older I get. She was something else.
When I think of all the “experts” I have met in this journey I find myself thinking how the people who make the most difference are the ones who actually “get it” or at least really try to. The ones who are just kind and caring. The condescending dietician irritating me the other day as she told me how I was feeling. I wasn’t. I see why she is such a big trigger for my daughter. I felt it in all her hiding behind her job title and pieces of paper but having absolutely no people skills. She knows far more about nutrition than I do but if you can’t see or hear a person beyond the illness then it just alienates.
What my daughter actually needs right now is someone beyond, that understands her. That just “gets her”. That can help her push through this wall that she is pushing at but needs a little more weight behind it to really shatter it. I’d love to think that I’m enough, but I know I’m not. I know my limitations in being the mum, as hard as I’m trying. and I’m throwing everything of myself at it. I can drive us forward and take the hits, and listen to her and know her and use all the approaches I know that work and help. But she needs more. Someone who isn’t so close to it all. An external person, a confidante, a person who is in it with her and believes in her too and who can help to push at that wall with her. Someone she trusts. I am pushing at it with her but this illness is so powerful that it needs more than a mum. I can’t play therapist to her in the purest sense of the word. There is a conflict of interest and therefore having someone that trusts and understands her and listens is what she is desperately in need of.
All the expertise in the world falls flat if it is not delivered without any real understanding of her, her life, her world and what makes her tick. She can’t relate to a lot of the types she sees. She sees them as people doing their job and then going back to their flash houses. Who don’t sound like her. Who talk to her in a way that reflects their world, not hers. She’s ill but she’s not stupid. She sees how the real world works. She’s seen so much real so keeping it real is a must. Having someone who can relate to her world feels so important.
Needing a Miss ON who was the only teacher at school who really saw the easy and quiet girl at school and saw her potential. She pushed her but in a way that showed she really cared and understood her. Getting to know the “under the radar” kid and taking interest in finding out who she actually was.
We’ve all had one of those haven’t we? Mr D my Humanities teacher at school being mine. He caught my young 11 year old feistiness hidden behind the quiet exterior and challenged me to show my mind. He was my “go to” all the way through school when other teachers pissed me off in their control and command techniques or belittling or condescending ways. It’s all in just “getting it”. Mr D was a master of getting the best out of me because he treated me like an equal and he didn’t talk down to me. I could argue with him and he would say “then show me what you can do M”. And I did. I know he found me exasperating in moments but he also told me how proud he was of me and gave me so much confidence.
With my daughter I am needed as a mum. A mum who is holding it all together and makes it feel safe and secure in dealing with all the practicalities. Seeing me fixing stuff again that had all fallen apart. Getting the bathroom sorted sounds small but feels massive in turning her home back into the home she remembers before it all fell apart and was left in ruins. Putting those foundations back in place in what is familiar. I can’t play every role even if I try. They conflict and there just isn’t time to be everything that’s required. Even though all my time is spent in this. Completely dedicated to her recovery because she bloody deserves better.
On days like the weekend when my daughter was feeling the stress and anxiety of something that was important to her and her frustration in this illness, she didn’t know how to let it out. i saw it coming towards her safe place and felt it in every kick and punch and bite. Finding myself having to hold it together as I try to safely restrain her, place her in her room without hurting her and close her door while she calms herself. And then sitting outside breathless, shaking and trying not to cry. This illness creates such strong feelings. It takes those moments of high anxiety to push her backwards. Helping her to eat after always feels like a mini victory. But the more she eats, the more she loses that comfort and coping strategy, and the more anxious she becomes. Help to find better strategies is what is actually required. To find new replacements for coping. She is trying in finding her own. Meditation classes helping. But the reality of this illness is that it takes time to be able to manage without it. to be able to relearn to cope in a different way. in a way she did before this illness took control. We find our way through those moments but I find myself so frustrated in how little she is being helped beyond. This is a mental health illness which requires therapy. She is at the top of the list but they have no therapists. We tried to go down the private route but she refused because of how much it cost. Knowing that I’m not earning because I’m caring for her and worrying about the money. Worrying because she has seen me worrying when I tried to keep hold of our home. It doesn’t matter how many times I tell her that her health is more important and not to think about it . She does. That’s how she feels. None of it helped either by seeing the effect on me in my experience with trainee counsellors and not having much trust in seeing how much that experience hurt me. Her once happy dreamy and easy going mum reduced to feeling worthless herself. I know how my experiences play in to hers. Doesn’t make me feel good and leave me wishing I could have hid it all more. But amongst all the difficulties and the moments of aggression she continues to make progress both physically and mentally. Having a semblance of a life around the illness crucial to that. Those really difficult moments feel a small price to pay in the bigger picture even though I know we need more help in order for her to deal with it. She was going to be sectioned and yet we can’t get specialist therapy in her not being in hospital. How can any of that be right. While meanwhile lots of money is being continually wasted on NHS middle managers of bureaucracy. What do any of them do? Can you feel my frustration? Less overwhelmed and more fighting for what she needs.
Her efforts in trying to take back control from this illness takes absolute super strength. Strength she is showing even in all her exhaustion. In those moments when she fights with it in ways that I can’t describe or a way that doesnt do it any justice, I see the conflict all over her face. A visible pain that cuts me to the core. Trying to overcome it and push through that brick wall that she can’t push through right now is so painful to see but not nearly as painful as it is for her to feel. A battle that I saw a few days back in its most basic and raw form in pushing for that one extra piece of chicken goujon. Putting a piece in her mouth, chewing it before spitting it back out and screaming out in her sheer frustration in not being able to swallow it. But then finding something more, as she sat curled up on the floor and tried fighting back one more time to the point of opening her mouth and pointing to it as she closed her eyes. Unable to place that piece of chicken in there and silently asking me to do it for her. So she could just chew and swallow. I felt her relief in achieving her aim. A relief that felt impalpable. The proudness I felt in her in just that one moment in seeing her strength and fight. What a Spectacularly Courageous Woman she is. Something that someone else wouldn’t even have to give a second thought to but for her feels so painful and difficult and requires her to constantly fight.
This illness creates hell for a person. It ruins livesIt destroys every part of a person and their life. And reclaiming it is a fight that happens in every moment of every day. Medicine that has to be administered all day long and feeling the effects of it in both the before and after. The anxiety in the build up to each meal and the guilt that comes after which is constant. A never ending cycle of pain which is eased by distraction. And extra motivation found in little carrots of nice things than seeing the bigger carrot of reclaiming her and her life. Before I was up close and personal with this illness I didn’t understand it. Did not have a clue. I didn’t realise the kind of damage it inflicts on a person. But the people who deal with it every day do. They know that it destroys lives. Although often I encounter “experts” that don’t. Not in a real sense. They understand the theory of it and it’s effects but not the reality of what it actually looks and feels like every day. How it affects each individual in different ways. As they talk about it very genetically as though the same approach will work for everyone. Ask any carer dealing with this. There are similarities and things that need to be done that are the same. But how they are experienced and felt by the person suffering often looks very different and also what they respond to. It’s a mental health illness and therefore one size doesn’t fit all. But in this massively and shockingly underfunded hidden illness the things required just aren’t there. So stumbling through it by yourself is how it works. And people trying to tell her how she feels is not helpful. As they constantly quote “it’s the illness”. “I am still a person” she often says to me. “I know you are” I reply as I think how glad I am that we kept her out of hospital. I’ve read a lot about how the mental health of patients in that environment plummeted. Dehumanised while being re-fed. You can’t tackle one without the other. And yet a hobbling NHS System is all geared up to weight gain till they get to a place where they can be discharged in favour of someone in more critical condition.
It is a deadly mental health illness, it reduces a persons life expectancy if full recovery is not made, it has severe physical implications and crushes who they are as a person reducing them to a shadow of their former selves, taking away all the things of life that we all take for granted. That very basic version of survival in food that for some provides their greatest pleasure, is her greatest pain. All the things that she once enjoyed in pizza nights, or a chocolate brownie or an ice cream at the seaside taken away, as food becomes medicine that has to be administered every two hours and not able to enjoy any part of that. Those chocolate brownies that she loved so much but now can’t touch. Replaced by more supplement drinks that provide the extra calories required. It is just something she has to do in order to stay alive. At this extreme stage it requires more. Weight gain not enough. Without the therapy she is just going round and round and getting more and more tired and frustrated. I feel it to. While the life she once had and enjoyed now feels like a distant memory of when she used to really laugh. A joyless existence where things aren’t experienced in the way they once were. Sadness, pain and anxiety and stress reigning supreme over a once giggly girl with sparkle in her eyes.
And yet her kindness and compassion for others always still evident even amongst her pain. I often find it inspiring in how caring she still is of others when she is going through so much that is hidden away out of sight. As she asked if we could take flowers round to her friend whose dog died. As she disguises her own pain in those moments. Others not knowing what hell she is going through. Oblivious. If they did perhaps they would be more understanding in moments when she can’t go to something or is late or leaves early. But she can’t tell them because she feels so ashamed. As they make jokes about her being boring when she doesn’t go to things. Those jokes that come from not knowing but hurt her even more and leave her feeling even more alone. We never know what others are going through. Just because it isn’t shared doesn’t mean it doesn’t exist. Just because it is shared doesn’t mean it doesn’t hurt. But seeing her kindness towards anyone tells me so much about who she is underneath. She being unable to share because she feels the shame of an illness that is hidden out of sight and feels so unimportant. Because others might judge and treat her differently without any real understanding about it. There is no shame in this illness or how she feels. And despite its absolutely devastating effects it doesn’t receive the proper funding required to help these mainly young people deal with something that ruins their lives. It feels shocking that something so serious is treated so insignificantly. An illness that can eventually either kill through a slow and painful death or has a high rate of suicide in feeling so completely alone in it. If I thought we had to fight hard for P’s mum and dad with their cancer then I am seeing with this illness, that we are constantly just hitting our heads against brick walls. And the truth is the psych knows it.The one person I really trust in any of it who really cares and is doing her best in an underfunded and hidden service. Because frankly no one really gives a shit about this illness. And that’s the truth. And until it’s profile is raised in a way that doesn’t feel shameful and embarrassing to those suffering with it, it will remain in the shadows. That Queen of hearts Lady Di also having an eating disorder. Did she bring that on herself? Or did events of life and the world she inhabited kick the shit out of her in all her sensitivity.
My daughter told me about the boy who repeatedly called her a bin bag. “Avoid her, she is a piece of rubbish” he was quoted as saying. As then her skin flared up , which then made her feel ugly and lose her confidence and self esteem. His voice repeating in her head in being a piece of rubbish. Stupid little boy not giving a shit about his impact on her as a young woman and all the difficulties that already come with that. Trying to feel good about yourself in this worlds obsession with beauty. All that women empowering talk of inner beauty often just feels like exactly that. Just a lot of talk. The world hasn’t moved on that much. In the real world beyond all that politically correct chat, women are still judged on how they look. To pretend that it is any different is to live in a fantasy. Ask any teenage girl or young woman who feel the pressure to look good. And boys getting the same treatment more and more. Something that Stanley Tucci said as we watched the Devil wears Prada as he talked of the billion dollar industries that aren’t about inner beauty. It appears, since the pandemic, that a new billion dollar industry is being created for the other. In the end they all end up being driven by the same thing. This illness being no different with private clinics servicing those who can throw money at it while in the average persons world they are left with an NHS system that can’t cope. Without the resources to deal with the complexity of this illness.
When it comes down to it the truth is that our kids feel more and more pressure In everything. Trying to fit in a world that often feels very superficial. Where can your perfect smile take you? I read as we picked up her new retainers. The lady behind the counter at the dentist always commenting on my wonky tooth telling me I too could have a beautiful smile if I had braces. I think just seeing my daughter well again would provide that. I always ignore her. I’ve had this wonky tooth my whole life. Didn’t stop me getting anywhere. Might be a different story now in the world of perfection. Thank god I grew up when I did. At least the page three birds back then felt a little more real to me and a little more honest in how this world really is. Well the world Iived in at least. Instead of a media created pretend version where all the double standards live.
The carrot for her in this case was a trip to the free open air cinema in kings cross where we took what we would normally have for lunch. A change that feels so small but is massive for her and provided the opportunity to do something she wanted to do. It made me wonder as we sat amongst the crowd what others around us might have done or gone through just to be able to get there too. She felt so happy just in being there and I felt the kindness of four young girls as they shifted along a little to give us space where others had claimed theirs and had no intention of shifting along for others. Despite it being a free event. I was so grateful to those four girls in knowing what it had taken for my girl to get there. She would have felt heartbroken after all her effort that day but instead we had a lovely little spot tightly together as we watched the film. I felt her feeling of just being normal as we ate our picnic like everyone else for a moment.
I see P”s face in those really difficult moments in being so upset in seeing her go through this, but also his new admiration in seeing how hard she is trying. Providing so much inspiration for him to try harder. To swallow his own fears and anger and sadness and do what is required . He used to say to her “you just need to try”. It made her so angry. “I am bloody trying”. Now he is trying and seeing how hard it is, it is her that is inspiring him. Every single one of those moments when I see her fight inspires me to try to be “more”. To try to be a better human. For her but also for others beyond at some point.
Because oh my god hidden underneath this monster of an illness is a warrior, a superhero, a woman who knows how to fight. Her strength so very visible to me even in all her tiredness. Pushing her to the very limits of what she has in her, to try to fight back and reclaim her life.
Please give more support to mental health illnesses. Eating Disorders affect more and more young people and their consequences are absolutely horrific both physically and mentally. And like many things that impact on mental health, they devastate a once very happy person and their life. All the fluffy talk in the media doesn’t change the fact that in reality, it’s still hidden away in the shadows of shame and more needs to be done in actually providing the adequate help that they really need. Please don’t leave our beautiful young people to suffer in silence.
My Friend asked me if I feel angry. In moments I feel it rise up as I quickly convert it into something more useful in doing. There is no room or place for it in this. If I were to unleash it in it’s entirety I think i might turn this world upside down. Instead I harness it for the job at hand. But yes, I’m angry. Mainly with P. But she needs him. She really needs him in this. And until he deals with his own stuff, he is just another thing for her to worry about. she needs to worry about her. and so I find myself as his biggest supporter as I hold my own anger and encourage him and support him in trying to take proper care of himself and deal with the things that he hasn’t want to and doesn’t want to deal with. Putting him before me because I care but also because he is holding the key for her. So I feel that anger but I don’t. But I do recognise it and that is enough right now. Less suppressed and more contained and converted. It’s a different source of power that helps me to deal with it all.
What’s the point of getting up? I’ve got nothing to get up for. I just don’t want to do this anymore”Words spoken to me by my daughter as she has in other moments. The beginning of the daily challenge of getting her out of bed in time for the first meal of the day. Her dad in the other room saying something Similar. It can feel exhausting in feeling it from both sides. She is trying really hard, he is starting to try but it feels hard. It is hard. Really bloody hard. I feel both their struggles. Often wanting to just take their struggles away. It feels painful to watch. Only can’t and I’m not. I can’t just fix this I feel my tendency to want to rescue but I know I can’t do that either. These are their own own journeys. All I can do is support. The weight of that on both sides feels really heavy as I try to hold it all up. I feel like superman in Man of Steel as he holds up that oil rig so the helicopter can take off.
The heaviness can make me question myself and often leave me owning the reasons for their struggles even though when I think about things more rationally I know how hard I have fought for a very long time. My arms feel tired but my heart feels strong. It’s easy to question myself with my daughter. As with most things in mental health it all ends up lying at the feet of the mum. It’s no surprise that most of those heavyweight theorists were privileged men in a male dominated time. I’ve mused whether Bowlby’s mum sent him to bed early without any cookies?! It’s all mums fault! Of course I’m being facetious but for mums it’s all a bit damned if you do and damned if you don’t, while doing the lion’s share of the work. Overly protective or neglectful. I know I wasn’t either but I’m not a perfect human being either. I have no doubt I have made plenty of mistakes even in all my good intentions. I can own them even if I’m not sure what they have all been. All I do know was that before that chapter she was always a very happy kid doing whatever she loved, and having her friends. She always tells me how happy she was growing up and she wishes she could rewind back to it before the pandemic. Before this illness took control. That transition from child to adult stunted in having her freedom taken away and being isolated at home in a less than a beautiful and wonderful environment at that point. Life has thrown its punches through a chapter and I did my best in putting myself in front of them. Those sitting pretty in their safe and secure ivory towers having no real concept of choice. Yes I wonder who they would be without that security.
When J died it all went pear shaped. A very traumatic moment that affected everyone. She was the quiet and invisible might that held it all up. They say being a mum is a thankless job. No one really appreciated how much she did until she was no longer there. Isn’t it always the way with those we love but take for granted. I always really tried to be the best mum I could be and have always shared a beautiful relationship with my daughter. Never needing to be thanked. Nothing selfless or sacrificing about it. I just love her and love that she is in the world. Always grateful just in that. She is the greatest joy in my life. Nothing about being her mum is a chore. We evolved through age from mum to friends. Something that is beginning to help as she shows signs in beginning to open up. Just little snippets. Seeing her dad trying and verbalising his struggles seems to be giving her permission to do the same. I was banking on it. Early days. Only one week in and P following his own plan but he seems determined this time which is raising my spirits In it’s subsequent impact on my girl. Obviously I care for him too, we have so much beautiful history but he is also a grown man who needs to own his stuff. But I’m supporting and encouraging . Just taking each day as it comes and trying my best in that. In the end I have only ever wished for her and others to be well and happy and do and be whatever she/they want. Nothing has ever changed In that. I’ve always been very simple in that but life and this world is a little more complicated. And stuff that has impacted on me that has hurt me and her, leaves me holding some anger and sadness. Because I didn’t deserve it. I know that.
She shared with me yesterday why the pandemic was the trigger. But I know what came before must have affected her and left her vulnerable to the effects of the pandemic. Chaos and insecurity ahead of chaos and insecurity. It’s been relentless. I hold my share in that but also knowing how hard I have fought for her and always being the grown up in that. The mum. And I know that P is holding so much guilt in how he behaved. It’s hard to reconcile those feelings He knows. It’s why blame and anger is pointless at this point. We all know what we do in life. Those with awareness and a conscience will feel it. But at some point you have to let go of it. Actions speak louder than words for me. It’s why fixing things is so important to me. It takes real courage to fix. It’s easy to just walk away and say I’ll be a better person elsewhere leaving your trail of destruction behind you. It doesn’t help those who got squashed on the way. The easy route. If you don’t know how to fix things then you’ll continually be walking away. I saw it in my dad as I held his hand and fixed it. He didn’t know how to. It’s why it took a lifetime and my little bros intervention. Because he was too scared. Are all men just very little boys their whole life? No wonder this world is such a bloody mess. The greater sex ?… As Jerry Hall said “Men are a wonderful part of life, but my life goes on whether they are there or not. I think Jerry has evolved too. In the end I own and hold my own versions of guilt in whatever part I have played in this illness, as I try to work out what will help and doing whatever it takes. Forgiving myself and others will come once I have released all the pure anger I’m holding inside. Most of it fuel that is being converted into doing. That doing will eventually burn it all out but whatever is left will be given a safe release. I was inspired with an idea.
The pressure of holding things up and the tiredness that comes with that can’t help but leave me questioning myself. So I have to rebuild myself back up each day just so that I can function in it and be what she needs. Feelings of insecurity and feeling less certainly won’t help. Her feelings of safety being created through a quiet and gentle strength. So that she feels like I’ve got this. But in moments when she shares that she is really struggling, I share that I have lots of moments when I feel that too. Because we are all human and it’s ok to struggle. It is tough. But we just keep trying and have faith . She has hit a wall right now and pushing through it feels hard because she can’t really see it yet. Doing what is necessary because she is being told to by the two people she trusts most. She just can’t find that switch that turns the light on and says this thing is hurting me and needs to be kicked into touch. It’s common for it to take a long time for someone suffering with anorexia to really see the harm it is causing and take back control. But in one week I can definitely see the difference it is making in seeing her dad starting to try. A feeling of solidarity in their struggles. And also being able to show those struggles as I find myself praising them both in their efforts as they share what they are finding hard. Just expressing that struggle feels like progress. I did laugh to myself when P pointed out to me that he had polished round. As I thanked him. It wouldn’t help for me to say “what do you want a medal”. Encouragement encouragement encouragement! I feel a bit like a mum to two kids right now. But if it helps then I’m happy to play that part for a moment. Whatever helps and works. Praise and encouragement all round in their efforts and trying. I actually do feel really proud of them both. Trying is everything to me. But seeing them trying for themselves even more important to me. I will get to me at some point I tell myself. Learning is how I give that to myself at the moment. Fortunately I have my mum and my few close friends who provide me with some encouragement in moments too. I can in moments feel very lost in it all.But I encourage myself as I remind myself what I’m doing and feel proud of myself in that. The most proud of me I have ever felt in life actually.
As for finding that switch. Sometimes you know there is something wrong but you just can’t see it. Not being able to find the switch so that you can you just press it. Sounds so easy and yet it’s really not, even when others see it and tell you. You have to see it yourself. When you are living in it and stumbling around in the dark trying to find it, it can elude you in a way that can create such inner confusion and frustration. Sounds like it needs a revolutionary and life changing moment. But the truth is you have to just search for it yourself and sometimes you just stumble on it out of nowhere. Looking for others to switch it for you is pointless because they often only see a fraction of the bigger picture and often see their own switch. Signposting and highlighting and challenging is as good as it gets. But encouragement right now helps them more. It’s easy to feel wise in what you are not living. Wisdom is as subjective as art.We can try to quick fix a million things with a plaster but until that switch is pressed it is meaningless. It’s just being able to function in this world. And sometimes that is enough. But to really change things requires a realisation, self awareness and ownership. And an honesty in who you really are. The real answers can only ever really be found within yourself and you have to search very deeply for those. And that’s pretty scary and often painful. In this fast turning world where we all supposed to have successful, happy and perfect lives who really has time for exploring themselves. It’s why quick fix therapy is more popular. Cheaper, faster and getting quick results. Even our hearts, minds and souls are being given the modern treatment of “on demand”. Achieve your best self in 12 simple genetic steps. It always feels like it has privilege stamped all over it with their set of values which of course comes with marketing and a price tag. I think I used to be influenced and impressed by so much as I put myself out in the world again after being a mum for so long. But I think my flower girl has refound her radar for bullshit. A bit like Shania “it don’t impress me much” unless it comes with a whole lot of real and genuine and substance. It’s easy to be fooled by what looks and sounds good on the surface. But when I had faith, really it was faith in myself in knowing that I was always being authentic. For me the version that I can share with is someone who is relatable in being real and genuine and trustworthy and kind and caring, who just listens and tries to “get it”. Kind of like my closest friends actually. Only two of which are trained in these things but all having big hearts and caring souls. And genuine empathy is massively up there too.
I think sometimes it’s probably easier to not think and just go with the flow. But I would feel like I was drifting through a life numbly. And why I often find myself not wanting to flow with the many. Finding myself feeling more alone in that version than actually being alone and also left with a feeling of emptiness. I don’t have time to kill. There are so many moments in life (mainly when I’ve tried to “better” myself) where I have found myself surrounded by people who all seem to be singing from the same sheet and effortlessly blend together in that, while I find myself not knowing the tune. On the outside I have found myself being able to blend in and liked but on the inside feeling like I have to adapt to their tune. Often feeling like a fish out of water. I’m much better with individuals than groups. Much happier in that version. Same when I was growing up. Group stuff always feeling like a show to me. Perhaps I need to learn to sing their tune but I have never found the motivation yet to do so. I think because I prefer my own. I know the people I fit with. I have found them hidden amongst many in all different places., All of them being very different but all very trustworthy honest real and true. I have a type. . And feel safe and myself in that without having to pretend or perform and not needing them to do the same either. But in those different qualities there is a leveller in feeling equal, no matter who they are, what they have or what they do. I tend to see and swerve those who use those things to create a power differential.. Relationships made of mutuality are the only types I’m interested in. I’ve never been a “yes girl ” and never will be. Genuine and real and not in need of others blowing smoke up my arse. I’m happy to be challenged as long as people are happy to be challenged back. But when I say I care I mean it. When I give a compliment I mean it. Otherwise I say nothing at all. But I can’t do pretence, superficial or holding up others egos. If you want a “yes girl” then best to swerve me . There are plenty out there . Some people like to give their opinions or judgements but are less receptive to receiving them unless it’s all wonderful. How can you ever learn anything or grow and evolve without being challenged. It’s only if it is seen in their way that it them has value. Might as well just talk to a mirror. Its the values that are the root of my successful and healthy relationships. The stuff on top is all the various colours that creates the rainbow. I love difference.
I went to see My Fair Lady at the Colosseum London with my daughter the other day. I like this story adappted from Pygmalion. The societal experiment in turning the common flower girl into a lady by making her speak proper … properly. I enjoyed it just in being there with my daughter and seeing her happiness in being out in London again and the relatability of people she recognised in the show that felt familiar. I can dissect anything and everything and fill my mind with thoughts that often provide inspirations. These aspects of the world beyond I really like. I loved the line of Mr Doolittle, father of Eliza who said “I am not in a position to have morals”. The dust man who had a simple life and was very happy in that and who said “they ruined my life” when his thoughts on morality suddenly made him a rich man and he suddenly felt like a prisoner in that. Preferring to just be in the pub with his mates. I can’t afford morals either but I have bleedin well tried to ave em my whole life. I think that’s my religious upbringing and my mum’s talk of money not buying class that influences that way of being. Laugh if you like but they mean something to me. I don’t care what others do or don’t do. Freedom is everything. do what you want. But I know what feels right to me in how I live life. Not wanting to tread on others or climb over others or use others just to get what I want. To do that would just leave a nasty taste in my mouth. The struggle is what has often provided the beauty and the gratitude. I’ve always believe and always will believe in every one having an equal chance in life but also in looking out for each other and being kind. It sounds so simple and yet we never really crack it as we are all supposed to aspire to the lives and ways of being to those higher up the ladder. But I don’t. And just in that I felt a solidarity with Doolittle senior. Meanwhile Eliza found herself conflicted in being neither the flower girl or the lady. “What do I do now” she asked of the man who took the credit in being the person who had made her a lady, but who still treated her like a flower girl. I found myself relating so much to Eliza in her journey to becoming who she had the potential to be. Which was very different to the intended version. The flower girl still living inside the lady. It resonated on many levels especially the song “without you”.
I thought about it in relation to all the people in my life who have not treated me so well.
I find myself wondering sometimes what will be the right path for me in the future and where I will wish to go. I don’t know yet. But the fact that I wonder tells me that I am still looking to go somewhere. Focussing on helping my daughter has all my energy and attention and that is as much as I can cope with right now. But beneath that I feel my feistiness that had been lost in the difficulties but is coming out as I finally flicked that switch and felt myself rise as I walked back through Holborn with my girl and sat in Lincoln Inn Fields while we took care of her afternoon meal. And thinking how far I have come as a person from then. And feeling my growth from all those battles. Post traumatic growth in place of stress. I still feel the stress. It’s bloody hard. But all that vulnerability being transformed into quiet and invisible strength. Still feeling some vulnerability amongst it. I’m a human and a mixture of strong and gentle. I still really care and love. That will never change. The flower girl will always be my root and sit at my core. .Feeling all those scars and that internal bleeding that I show in moments but mainly hide right now in order to function. But also feeling so very self sufficient. L & K especially put their hands out. And I appreciate that so much. I’m not an island and nor do I wish to be. But feeling safer with those who share similar values with caring natures alongside a lot depth.
When we are in situations that threaten our safety and security they say we have a moment of Fight or Flight or Freeze. I am already fighting but have felt completely grounded. But some inspirations and lots of reflection has started to see me rising again as I find myself suspended in the air. Not quite flight or freeze. Perhaps right now I am a mixture of all three. That feels a good combination in this current endeavour and certainly movement even if travelling nowhere.
Why do I fight so hard for others? Because my dad didn’t ever fight for me. He left and didn’t look back and in that left me at the hands of an abusive and narcissistic stepdad who made all our lives hell. Once when I found myself alone in the house with him as a young teenager of 13 he came for me. In that moment I ran to the kitchen to protect myself and picked up a carving knife which I wielded. Scared shitless little kid whose bravado told him that if he came any closer I would use it. I’m not sure if I would have? It scared me way more than him, I should think. But in that moment my response was to fight. Like a cornered animal whose survival instincts took over. He turned around and walked back up the stairs laughing and calling me unhinged. I wasn’t unhinged. I was just a child protecting myself from a predator and continued to do that by putting my bed in front of my door until I left school at 16 and got a job and moved out. Those teenage years being very difficult for me. Stopping me from doing what others took for granted. Working so I could be somewhere safe. Not telling my mum because I didn’t want to upset her. Eventually she saw him for who he really was and got rid of him. But it took a long time for her to find that switch. I finally told her while I was on that course. Always left with a feeling that perhaps there was something wrong with me. Perhaps i was unhinged Even though I’ve never done anything similar since and in fact am a very gentle soul who doesn’t wish to hurt another soul. But protecting myself and more so others, most specifically my daughter being at the top of my priorities list. I blamed my dad for leaving me in that position. For leaving my mum so vulnerable and having to try to survive on her own with four kids and making her a prime target for a man that seduced, manipulated and controlled her. She told me during the pandemic that the moment she felt most free was the day her divorce from him came through. No one has been able to control her ever since. T tries in moments but she just skips back to her own place where she is always happy doing her own things. She wants him but she doesn’t need him. But she is still as warm and loving and caring as she has always been. I think T likes that she keeps him on his toes. Even if In moments he finds her exasperating. He knows she has a really big and beautiful heart and is completely authentic. There is absolutely nothing fake about my mum She’s always kind and polite and friendly to anyone and everyone, but she’s nobodies fool. She told me that had she known back then what had happened to me it would have pressed her switch. She feels guilt in bringing him into our lives. But she didn’t know. She was the perfect target for a man like him who can smell the vulnerability. And plays on kindness and compassion. Disguised behind his position of power of a deputy head teacher. Who would believe the “gutter rats” that he “rescued”. And at the time I didn’t want to ruin things for my mum or see her struggle in the way I had seen in her when left by my dad with absolutely nothing and having to do all those different jobs that paid the bills because she was too proud to go on the social. When I think about who she was and is, I think how epic she was and is.. I feel so proud that she is my mum. She could have done anything in life. Way more capable and intelligent than my dad. But she chose to look after us. And she absolutely tried her best in that even if she did make some mistakes. She’s only human too. But she has always tried to rectify them learning as she went. She really is one of a kind and a massive inspiration to me. That girl who is getting closer to 80 is still dancing in the sun . She doesn’t give a shit about convention. She is totally her own girl. She tells me often that I will get to that too when my important work is done. I feel it too. I don’t know why but I feel it too. I’m not done yet. Too much still living inside me. Rethinking in fact that weirdly in in its very messed up way, that perhaps this is my moment in the sun. A moment when I am finding out exactly who I am and what I’m capable of. It certainly doesn’t look and feel very sunny, in fact it’s an absolute dark storm but it is the most proud I have ever felt in life in holding things together and seeing the very gradual changes in them but also in myself. Requiring so much more than I ever thought I was. But I take in everything. Learning and growing constantly.
I told my girl tonight that she is a superhero. Her trying is epic. And she is really trying to fight for her life. Even though she still can’t see this illness yet. Or all her strength and amazingness in fighting every day with a villain that she can’t see. She just can’t see it. But she follows me in doing what she has to do to fight it. I can see it even if not In all it’s details.. And so she fights with it because I ask her to. Just because she trusts me. Until she finally sees it and can flick that switch that allows her to push through and fight for it herself. Because she is worth so much more than what this illness tells her she is. So much more. She really is a superhero. But in the meantime I keep fighting for her. Every change or progress being a mini victory in what we are doing together as I continuously now try to hand back that control to her. It’s gradual work without overwhelming her. But all these little things reminding her that she can do it again without me.Getting to that place she wants to get to. Where she doesn’t need me. Because she is her own woman. That’s what we are striving for.
I feel both of their frustrations projected on to me but I’m rebooting myself every morning as I sit in the garden early in the morning listening to music. I do the same when I go to bed. I am the person who is fighting harder than I’ve ever fought to help two people get up again. And trying to help her destroy this illness. This illness that is creating a living hell but I am standing in its flames and refusing to let it. I have quietly been where they are. Where you are completely depleted and feeling broken. I still feel it too in many many moments mainly when I’m tired. I’ve seen people unable to get up for so much less but I’m having to just push through it all. I am pushing through it as I find inspirations that help to lift me higher. Finding even more new strength by pushing everything else aside and only concentrating on what is important. Helping my girl. Feeling like the most important thing I’ve done in all my life. And helping her dad is part of that. But he is struggling so much. I understand it. He’s been through a lot and I’ve felt the same traumas. But one too many in seeing our daughter almost slip away. She came very close and that has affected us both as well as what it is like to live in it. Trying to rebuild yourself when there is something so big and important to deal with is not an easy task. But he has to try. And he is. It’s taken a lot to get to a point in trying. I feel his pain. I feel the immense tiredness from trying to help her, him and survive it all myself and to just keep going each day. Adrenaline carrying me in those early moments but something different required in this daily slog. Patience, commitment, resilience, determination, faith. But I’m going. More than going. I’m holding it all up and rising in it. Sleep is my best friend. Without it I think I would crumble. When I’m rested I can deal with it all more easily. The tiredness is what affects me most.
I was completely unaware before that course In how much I had always carried us in all the basics. Didn’t recognise the strength that was in my quiet doing. That looked so insignificant and worth less but always made stuff happen. As though it materialised from nowhere. As though an invisible fairy had come along and waved a magic wand. In fact Ive never had a magic wand. It has always been quiet and invisible hard graft that was so quiet that no one really saw or appreciated it. Its sounds cliche but their happiness was always my reward. It has always made me happy making others happy. But no one wants to feel used or taken for granted or Mistreated or treated like their life doesn’t have value. Any relationship has to feel feel like a team effort. Sometimes it is weighted more heavily one way like now. And I don’t mind because it’s more important. My friends supporting me through this long chapter and feeling more heavily weighted my way but gradually I will give it all back. And I think and hope that they know that I guess I made a rod for my own back right from the start. I was just so happy when I found someone I felt completely safe with and was able to build a really beautiful life with. I wanted to give all that back by by doing al all the things I knew how to do and make it even more wonderful. But it meant that P never learnt how to take care of himself. His mum, me and then his daughter all taking care of him. When I was doing elsewhere and not having time to just take care of him he was as lost as his dad was without J. He’s been lost ever since. Even though he took care of both his mum and dad in ways that are inspiring. He can do it. I believe in him. Seeing him now try is lifting me. too. I know that I am more than a flower girl or a lady. Kindness, courage and hard graft will take us to our individual versions of “better”. An individual and collective journey. Helping my girl to be independent and be able to take care of herself again too. I can see how my own neediness was created in me during my moment of feeling very vulnerable. But how unneedy I feel again despite having to deal with this mainly on my own. My eleven year old reflections reminding me so much in how independent of mind spirit and action I was and still am. I’ve never been a princess and never wanted to be in the traditional sense. I love the romance of life and believe in love and magic . And the dream of rags to happiness. There is a whole lot of Disney in the flower girl. But I always wanted to be a superhero.
I’m finding myself feeling like I don’t need to belong anywhere other than to myself. The crowd creating its own safety in numbers. I am feeling enough in myself. Standing on my two feet And only wishing for the company of those who want to be around me but not needing those who don’t. I don’t want to be a damsel in distress or a one of those “I’m a strong independent woman” kickass types. I’ve got smarts and I wish to use them. I’ll find my way. Underneath warm and loving and caring and compassionate. But with some super powers to boot, which I don’t wish to abuse but just use for good in whatever version that might look like. I am feeling more secure in myself and who I am without anyone telling me. Not in an arrogant way. Just in knowing that I am a good and decent person in the world with a caring heart and that I am capable of doing anything. This situation showing me that. I have learnt so much more in these challenges than I ever did in two years in that room. Other than I know how to write an essay which was handy in getting a 2-1 for those essays while I kept her in it. I don’t even know what a 2-1 is? I don’t take anything for granted in this. It can swing from one extreme to another in just a moment.
It’s easier on some days more than others but we have come a long way from those early moments three months ago when I tried to help her to remove the agitation and frustration and anger more safely as I lay beside her and stroked her hair for half an hour. Holding her hands as she hit her head over and over again. Screaming out and throwing herself around. Some days it worked, some days not, as a back and forth was required that could take hours and on those days it often ended in a war zone as all those feelings would be unleashed on me despite all that relentless patience and calmness. The illness just not wanting her to get out of bed and eat. Perhaps she just needed to get it out but hurting me wasnt/isn’t the greatest release. Well not for me at least even though often she felt better after. For a while. Three months feels more like three years. It’s been completely intensive care Keeping me safe hasn’t always been possible, but keeping her safe has, as I’ve stood up strong in taking it. Even if it sounds weak. Because through standing strong that weight has gradually and painstakingly increased and those very small but significant changes have happened. Like watching and seeing the changes everyday in your child starting to stand up. The ends in those moments have justified the means. I was a mum trying to keep my daughter in this world . I would have done anything. And I would do it again in a heart beat. It has worked up until now as I have taken care of both physical and mental aspects of this illness. Still such a lot to do. The little bit of support from the clinic helping in keeping us on track but the work totally happening at home. You’re pretty much on your own in this illness despite how complicated and difficult it is. Our provision of out patient treatment for this illness in this country is absolutely shocking. It’s not their fault. it’s very specialist and underfunded. The preferred method for dealing with mental health in supporting them to help themselves. We are only just starting to get to that version. Not quite there yet. But I know as I reflect back that I was right in not letting her go to a place full of strangers where I think she would have given up completely. She often asks me how I am doing it. How I stay so calm in it all. How I still smile. And I tell her that I don’t really know the answer to that other than I try to find what I need inside of myself that I didn’t know I had just to keep going so that I can help her to do the same. Because I love her more than anything in this world. It’s amazing what you can find in yourself just through that basic feeling of Love. Love isn’t weak. It is the strongest emotion of them all and has a power that can lift you to a place that you think is impossible to get to. That is the power surge that happens overnight that helps me find more. It’s relentless and there are many moments when I think “I can’t do this” but I just keep trying . We have progressed since then. Often now just a five minute hair stroke and gentle encouragement before putting out my hand for her to take before she just gets up and heads to the shower. This morning she just got up. It felt like a revelation. Maybe in going to see My fair lady. If I didn’t have to worry about the food aspect I probably would have tried a different tact. Allow her to self-soothe and find her own way up eventually. I know I can’t fix it. But this illness works very differently. In that scenario it hasn’t been an option. She would have stayed in her bed and not eaten a single thing until eventually she would have wasted away. Anorexia doesn’t care about a survival instinct. The powerful darkness of this illness is such that without eating it takes complete hold until it destroys you. We came so very close to that. Something I have to put out of my mind. The very thought of her not being in this world is too much to bear. And would leave me feeling like I wouldn’t want to be either. She is the person who provides meaning to everything I ever do in life. Without her I would be living in an empty and soulless world. This world needs her. I need her. To find myself wishing for, praying for and fighting for my daughter’s life has changed me profoundly forever. Life and death has a way of doing that. In ways I can’t really express. But the gratitude in her still being in this world is immense. And everything that I have become in that fight is what I’m most Proud of in the life I’ve lived.
But every good thing has its flip side. And within all the work in protecting her and helping her to gain weight and what that takes, has also created her neediness in me that is inevitable but one that gradually needs to be removed again. She didn’t need me in this way since she was a baby in my arms. Just as we took that journey for her independence back then we need to do the same again. But this time it is little steps of reminders. Like relearning to walk. She knows how to do this but it’s gradual steps. I believe in her. I know she can do it. Her dad just trying to stand up again but I believe in him too. It’s hard. It doesn’t happen just like that. It’s just struggle and trying. Relentless trying. It doesn’t matter it he falls. It’s all about getting back up. The feeling of safety for her being so important right now but the feeling of independence for her being equally as important to me. And I’m very aware of trying to find ways to help her in that. This is an evolving climb and the same plan won’t work all the way. Where I would iron something she wants to wear she now asks for the iron to do it herself. It seems small but important in doing things at a pace that doesn’t scare her or send her backwards. Well sometimes she goes backwards but it’s all trial and error. Like a faster track of going from child to adult without it being so fast that she is overwhelmed. Just sitting on separate sides of the auditorium the other week was a tiny step in dealing with separation anxiety. Something she felt at the weekend and shared with me after returning from a weekend with her uni friends back at the house. Another risk worth taking in balancing her need to stick to the food plan while rebuilding a confidence in being able to take care of herself. She found it hard but managed for a couple of days. It’s a tight rope we are walking here and her realisation in her own feelings and being able to share them felt massive both in self awareness but also in vocalising it. She felt the comfort of coming home and feeling safe again but also the fact that despite all those feelings and the odd difficulty with the food plan that just for those couple of days she was ok. Rebuilding that secure attachment. I’ll be right here. She is way off being ready to go back in September right now but we have some time. It is a big part of her motivation in trying to get where she wants to get to. Having purpose, happiness, a life is a massive part of her recovery that still requires boosting her weight back up. That work continues every day. There’s a lot to try to deal with. It’s a complicated balancing act. And it can often feel overwhelming for me in trying to balance all those things on my own while her dad feels the tiredness and frustration in trying to stand up. I’m trying to give him space to do that but sometimes I need a moment when I’m shattered to take a respite for myself. I’ve never felt such tiredness. I have to get my sleep.
On Saturday while she was away I got a rare day to myself where I had made a plan to see my friend K. It’s the first time I had been out for a whole day on my own in so long. And it felt very strange as I walked through Pimlico to meet her on the way to Tate Britain. I should say at this point that sharing in that with her was wonderful. I know nothing about art other than “I like it… I don’t like it”. I tend to find something I like amongst it all. But on this occasion the exhibition she took me to was for an artist who I really related to. Helped I think by the artists wonderful explanations of her inspirations behind each piece of work, how they were created and what they represented for her. Art is subjective. Everything is in the eye of the beholder. But there is something really connecting for me in understanding what it means for someone who created it. And from there I am able to interpret my version of that and whether I can feel it or not. Whether it resonates or whether it doesn’t. What it means to me or what it doesn’t. There were lots of things that I really loved. My friend K loving something different to me. I went home wondering what it was she loved so much about it and asked her the next day. As ever I was blown away by her response. It fascinates me so much in how her eyes see things. Often thinking how cool it would be to live inside her mind for a day and walking around seeing things through her eyes. That soulful quality coming through in her explanation in a way that I hadn’t been able to feel myself. But remembering it and loving it more through her eyes.And then thinking about what I really loved. Loved in a way that I don’t think I have ever felt when looking at art. Perhaps it was the humour that I found in myself in reading the artists explanation. Or how beautiful it looked in all it’s simplicity of raw materials and busyness and complete carnage. The artist blew up her shed with everything in it. All the random stuff that lives inside a shed. She filled it with explosives used by terrorists (a word I think she used with a much wider meaning than the version of terrorist we are given. I think that institutional terrorism was definitely in her mind. Or perhaps it was just in mine. It’s a very emotive word. The world of good and bad being very blurry when you pick it all apart beyond the simplistic version) and then pushed the plunger down and blew the whole thing up. God I bet that must have felt amazing as I wished I had blown up my previous shed before replacing it with the new one. I walked round the whole exhibition saying to myself “she blew up her shed”. My friend K buying me a magnet to remind me of what touched and inspired me so much in that moment. Because what that looked like in art form was a devastated shed that was put back together in a suspended form along with all the collateral damage in the various injured and very different everyday random things that hung inside those pieces of wood, some of which had survived and some of which were battered. Looking as though it was a slow motion version of being blown up or a slow motion rewind in being blown up. Either way the feelings it created inside me are still sitting with me. But more so in putting something back together that has been completely destroyed and making it even more beautiful than it was originally. Definitely a metaphor for me in seeing my own life’s complete devastation. I felt like I wanted to be left there all night with it. To lie and sleep next to it. I didn’t know why. There was something reassuring about it. Something childlike too. Something macabre in its lighting. My friend found it calming. I found it awe inspiring. That something so simple and ordinary could create something so powerfully inspiring. That it could be suspended as if floating effortlessly in the air. I am looking at the magnet every time I go to the fridge and I find it really reassuring. There are a few things I would quite like to blow up. But I think I may just build a miniature version of a shed out of all the sticks of the mini milks my daughter has to eat and then fill it with random things that have hurt me in that chapter and then blow it up when my daughter is well again. I think perhaps a firework might suffice as my ammunition. And perhaps create a little sparkle after. I think K would approve of that. One day out and I sure did enjoy it to the max and finding inspiration that hadn’t previously existed through someone special sharing a world they love with me. A world that wasn’t given the space it deserved because it wasn’t understood. I didn’t always understand it myself as I shared with her but what I loved was it’s very different version to me. An alien version to my own alien but that held so much interesting and wonderfully fantastical stuff. And with such a goodness and generosity of spirit attached to it. I feel lucky to have met her as I do with all my closest people. All having something very specifically different to them but all having that same big caring heart that sits underneath. Just in being out on my own in the world again as I travelled there left me feeling like an alien and wondering if I looked like one. With just myself to take care of for a moment. It felt strange. If you are going to be an alien who doesn’t want to connect socially with the many or be noticed by others right now then London is the place. I could be Superman himself and no one would take a blind bit of notice especially if I put my glasses on. One of the many things I love about this City (a city that In moments I can lose affection for but I only have to look at the beating heart of St Pauls and I am reminded of my deep love for her and all the spectacular memories held within her. People come and go in it and often use it because it provides what they want and need for a moment. But for me she feels special. You could put me somewhere so much more beautiful and friendly and safe but it would never feel like home to me. Having to fit is not something I wish to do now. Belonging can take away loneliness but can also feel like a prison for me.
love London because it is home. They say home is where the heart is. It’s absolutely where my heart is. It was the place I felt safest as a kid. It was the place that provided me with all the opportunities that I didn’t have before I left school. It is the place where I met all my closest friends. And it’s a place that feels very real in all its good and bad. I’m more of a girl next door who has some grit. Anonymous suits me much more right now.
But meeting a friend I love and trust really helped. I’ll always be a girl made more for intimate relationships than the crowd.
I’ve been thinking a lot about super heroes. Superman and Wonder Woman being my favs. Loving Superman In all his ultimate powers because fundamentally he had a good heart and is always on the side of justice. And uses those powers for others rather than himself. Ultimately believing in humanity. I love the moment in Man of Steel when he goes into church and reveals to the priest who he is. and then flashes back to when he was a kid and challenged in “choosing what kind of man he wanted to be”. And I found myself thinking about who I wanted to be. I don’t have the power to change the world but I do have the power to be the kind of person I wish yo be that I can feel proud of. And as he walks away the priest says to him “sometimes you have to take a leap of faith. The trust part comes after. ”Those words sit with me a lot. I’m not ready to take any leaps of faith beyond my girl. I think I have lost a lot of faith in others. I put that film on everyday when I was working from home. It kept me going in moments I felt like just giving up. Sounds so silly doesn’t it. Ok so Henry Cavill was easier on the eye than a digital platform but there was something in his transition from boy to man and the various conflicts that existed inside him that resonated with me as I watched him each day save the people he loved and the world beyond. Love and Justice sitting at its heart. P has always laughed at me in my love of superheroes. But I believe that we all have a superhero inside of us. And a villain too. I guess it depends how we choose to use that power and who for. I feel like a flower girl in a red cape.
My songs and clips represent my recent inspirations. Zimmer in the mix of course.Strength comes in many versions but the strength and beauty that comes through struggle is often invisible but it is what inspires me the most.
I bought tickets in May last year for a concert at the Royal Albert Hall. I remember being so very excited in that. Williams vs Zimmer. Less of a conflict and more a celebration of difference in Williams Sweepingly romantic and melodic soundtracks against the electro vibe of Zimmer who has a way of expressing strength in its many versions with gradual builds to crescendo and light and dark versions sitting side by side in all their versions of love and hate, courage and fear, success and failure. His music often has a way of building strength and courage in me. Not the versions that I see in all those strong kick ass women but a version that quietly deals with difficult things every day and survives it. I have listened to Zimmer’s music a lot over the past seven months. Williams bringing out my more dreamy, magical, fantasy and adventuroush side with the occasional melancholic undertones. There is no comparison between the two. They bring out something very different that ignites contrasting parts of who I am. The dreamer and the Invisible warrior. The tickets were for the cheap seats in the Gods. I could only get two singles in different parts of the auditorium. When I bought them I had a friend in mind. A present for their birthday which was many months away. It didn’t matter that the seats weren’t together. Music travels and connects the soul and in that can be felt at a distance. That was my thought and feeling anyways. As it turns out I never ended up giving them that ticket. I made a decision to go alone instead. They didn’t need it. But when I came to the day with my daughter being at home and unwell I asked her if she wanted to come with me instead. It’s not really her thing but I thought it would be another nice distraction for her. So we went a couple of weeks ago. Another military operation (as these things are with all our supplies and all the anxiety that comes with having to feed in amongst it) but since the holiday I have been better in being able to manage them. I wish wish wish for the day when I don’t need to manage them and she can just fly completely freely again and be really happy in that. I just want her to be well and happy again. I always just wish for people I love to just be well and happy. Well anyone actually. hope they are. I hope at some point that I might feel that again too. If I’m lucky. Please let me be lucky. Sometimes I wonder if I will ever get to that. It feels hard to remember a time when I didn’t have to worry and could just be really happy and me. Although I was told that I had had my time in the sun.
It’s been a never ending nightmare ever since that course. I received a message the other day from someone I really liked, that I originally met earlier on in the process and continued on to the end. I found myself not wanting to open it and thinking “please just leave me alone now” as tears filled my eyes. She was a lovely person and always lovely to me along with others there. But just the association to some people and that time was enough to trigger what I have had to compartmentalise in order to deal with this illness. It all just feels completely ruined and horrible and person and life crushing and I find myself not wanting to be anywhere near it. Other than K and C who I trust and who understand. It’s just more collateral damage of not being able to be around people that I met that became some new friends that I really hoped for to add to those few specials I really love, but was all messed up by everything. Everything about that moment just feeling like ruins, in what was supposed to be a really wonderful and inspiring and beautiful moment and adventure in my life that I had waited so long for it. An adventure that was about wanting to help others but in the process to get the opportunity that I had missed as a kid that others took for granted. Never getting that moment in the sun that was just for me. Where is wasn’t about being responsible, dutiful and having to just survive or take care others. Taking care of others is what I do but in my girl getting older and being happy and independent, this was a moment to do something that in part was just for me. It wasn’t selfish. It was just what a lot of others do their whole lives. And I didn’t neglect all my responsibilities around it. I worked even harder to give myself that independent moment in the sun as they say. A moment that ended up being clouded all the way through in being constantly called selfish and it all being put down. And all the things that I ended up having to deal with beyond just because I took a moment of independence. In trying to be “more”. To see all the various things that I might be made of but never had the opportunity to be explored. And knowing that these opportunities didn’t grow on trees for me. This was it. And I wasn’t allowed to just enjoy it. Influences within it and outside of it not thinking or caring what it might mean to me. Not caring that it might feel really special for me. Just another little opportunity amongst many for them or an opportunity that didn’t include them. Half a life lived but the first time I ever did something that was just for me. It all upsets me so much that I have to just bury it all very deeply but was released for a brief moment in receiving that message and then more fully in a moment today as I cried. I can’t deal with any of it. Can’t feel the emotions attached to that chapter without it impacting on my ability to function in what I’m dealing with, can’t deal with others judgements or meanness or feeling all the chats behind others backs. Or feel those comments to new people in how “unhealthy” I am or being some kind of devil who they had the misfortune to meet. I was a very healthy person before I put myself in that place. Completely normal and nice and kind and friendly and warm and loving and part of anything. Just a sunny girl next door who wanted to be friends with anyone and everyone and looked out for other people. Fun and happy and just rolling along in life without asking for anything much. Just trying to have a happy and peaceful little existence in a world where I had to work for everything I had but didn’t care about being rich, famous, popular or powerful. Just wanted to be kind and caring and do things that made a difference. I told her that I couldn’t come and was honest in my reasons relating to my daughter but without providing detail. How I often wish I could just erase it all that chapter from my memory now. It just makes me feel like a piece of rubbish, an ugly and unlovable person, a complete failure, completely stupid and foolish and like a big joke that can be laughed at and mocked and put down. It all hurts so deeply that I don’t think time will ever really fix it. A chapter that has hurt me more than any other in my whole life even as a kid. Only distance helps in trying to have amnesia in it all as though none of it ever existed. But living with the consequences every day. How hilarious that would be for some as they carry on without a care in the world leaving it all behind a long time ago. Not giving a shit about their impact on me in all their lack of self awareness and leaving me never wanting to put myself around new people ever again because I just don’t trust people anymore other than those few I call my friends. Wanting them to forget that they ever met me or who I am. All my faith lost in being reminded in how the world beyond functions. How fickle it is. How hurtful people can be. just like when I was a kid. It’s not bitterness or disappointment. It’s like a recurring feeling of being worthless. That’s how that whole experience and the events that came beyond in its full entirety have left me feeling deep down inside. That’s the thing about being an emotional person who loves to the max. You feel the pain to exactly the same level and it hurt me in ways that feel too painful to really ever deal with. It has created the most pain in me in all my life. A trauma that feels never ending and has ripped my heart out and handed it to me to look at. In moments feeling like I am a monster or some kind of devil as opposed to the superhero that my counsellor that I talk to on the odd occasion, tells me I am. As she offers me free sessions in order to help me deal with the impact. What a lovely lady she is. It often feels like she is very protective of me and telling me every time I talk to her that I deserve to be taken care of too and always reminding me in all I have done, achieved and survived and who I have been in that and who I am to others. She gives my nan back to me and asks me to own it. But I know my nan was something so much more. So much much more. And my mum really is one of a kind. Something that T often says too. It is often her words that I place in my blogs that lift me out of worthless and to a place where I can continue to fight for the person I love most in this world. Never seeing each other’s faces as we talk by phone but she tells me that she thinks of me often. And tells me how much admiration she has for me and how proud I should feel of myself. I try. I write it in order to try to. But I am exhausted. But I still get up. I always get up. Bravado in wanting to feel it but still feeling like that same simple girl inside. A girl who is really just so very gentle and doesn’t want to have to be a warrior. But just having to be.
I think of the moments when me and my girl try to do something nice together. It never feels relaxing for me at the moment but I really really love to see her happiness and it makes me so happy any time I am able to create that, and within all of it, together somehow, we manage the anxieties that surround it all. It’s all just little steps. But I believe that all these little steps help, and take us further up this mountain. She rang me one day when she was with her friend just to tell me “mum I think you are my soul mate”. What a beautiful lift that gave me.
For a change I have a plan. A plan in getting her through this and back to her happy and healthy place. Despite the resistance and conflict that comes with fighting with IT I know she really trusts me and feels safe. It’s just difficult work that takes time. But any progress is progress and I never give up. In many moments I feel tired, and sometimes completely dejected and wondering when and if we will make it to the top but then I have a chat with myself. You can’t think about it in that way. It requires an acceptance in how it is and trying to get through it each day and find some happiness in amongst it. So In those moments I try to remind myself of who I am and what I’m fighting for and to have faith in something bigger than myself that is taking me along a path that I am meant to walk. That it is teaching me something important and to feel the humility in that. I take in every lesson and reflect a lot about her, me, life. My self awareness often feeling off the scale which helps a lot in this but maybe hopefully will also hold some value in time to come. I think that a life really lived is full of everything. Not just the joyful and easy stuff but also the pain and the difficulty. You can’t really have one without the other, especially if you really love. They come as a set. Light and dark. My daughter providing the most joy in my life and right now the most pain. Because my love for her can’t be quantified. She is the person who brought meaning to my life and seeing her grow and change through the years has been the most exciting adventure of my life. But right now we are in a very heavy storm that follows many previous storms. But I plan on getting us through it.
That plan changes and evolves, sometimes it goes completely off script or falls apart, but it is very intricate and complicated and has many different factors thrown in the mix. I don’t really like having a plan. Never really had one before. And don’t really like being in control of anything. Would prefer someone else to be. Well other than being in control of me. And even then I’m not always in control of that. My heart taking me up and down paths that a head would query more I’m sure. But I’m having to take the control in this in order for her not to drown. Often wishing P would take some too. Because it is really draining. As I look after everything while fixing up the home to a way it once was. All these things make a difference. A bathroom ceiling that is no longer black as the bathroom gets a similar makeover to the garden and shed. I may be a thinker but I’m absolutely a doer as I put foundations back in placeBut P can’t quite engage in the way he needs to yet and I think it leaves him feeling helpless, frustrated and on the outside. Even though as I tell him often, it is he who holds the magic key to this. He just can’t find it yet. But he absolutely has it. I can see it and he is starting to. But he needs to search for it first. The subsidiary patience in trying to help him as best I can with the time I have which has resulted in him beginning to take much needed care of himself and put his hand out for counselling. Both feeling like a massive victory that have taken forever to get to, alongside a lot of anger directed at me. But I am continuing to hang tough in this in knowing what he does will significantly impact on what my daughter does too. It’s not good enough to just run away with her. He is her dad and she is so protective of him. She needs him and she looks to me to hold it together. She sees herself in him. Their is method to this madness when you can see all the pieces and how they fit together. Sometimes you have to save the root in order for the flower to blossom. In the meantime I continue to just manage it and hold it together. As he finds that key she will start to find hers too. I’m sure of it. But it requires him to be courageous, take some risks and have an open mind. But my continued patience with him is seeing him starting to take action. It is definitely catching her attention. I knew it would. Challenging her mind set in seeing him challenging his. They are two matching sides of the same coin. But struggling with different versions of eating disorders. Both a form of comfort. Both used to hide their emotions and not share. In many ways I am the same now. Having to hold mine in order to hold theirs and function. But I share in odd moments of my own counselling and I write a lot. Journaling being my release.
She relates to him more in their way of being. She is stuck even though she is trying so hard. So hard. Her resistance to being helped being pushed against by me, the psych and the other people at the clinic. But we are singing from a hymn sheet of the converted. But being pushed against by the “not” converted will have way more impact. And not in telling but in seeing. She is watching. I can see her watching. Learning how to fight back for a life that was devastated by different events of life and people. But needing to see how to get back up from someone she trusts, understands and can relate to. His magic key is all in his relatability. By starting to “do” he is enabling her to watch and learn in how to do it so that she can follow. It doesn’t matter how many times I’ve got back up, she needs to see it in him. He will provide that permission to be open to things that might help by doing the things they are both resistant to. To make it acceptable just as right now he makes it acceptable to bury it all and release all emotion in aggression and anger. And I can see her observing closely without saying a word other than sharing how he might eat more healthily and encouraging him in exercise. All the opposite things of what she has to do. But she will be looking for the results and especially those that come from counselling. Whether it helps. She tried twice and didn’t want to. It can’t be forced. It has to be a choice. Him choosing to go makes a difference and also how he responds. How he changes in that. With only eight sessions I’m hoping it’s a bloody good counsellor who can build a bridge to a different world and ideology and who doesn’t want to impose their version of what a successful and healthy person looks like. He needs to find his version of that that sits alongside who he is and what his values are. Sometimes it’s just having a safe place to share the frustrations and sadness or to dump all the traumas. There are many. A trauma he hasn’t even gone near for fear of how it will make him feel. It is scary. And just finding trust in that will be a challenge. It feels hard to connect with a stranger in a world that you struggle to trust. But the fact that he is committed to trying feels worth the time and effort in just getting him to reach for it. In reaching for it for him he is reaching for her too and she can see that. I feel such relief in him starting to try. It feels like a massive step forward. Her illness all hidden at her request. There is no respite that comes from beyond. My mum knows but is unable to intervene as she isn’t supposed to know.
Back to the concert. I could feel her from the other side of the room. A nervousness in being alone again. But that little moment of alone but not alone, reminding her that she can do it. That she is ok. That I’m with her even when I’m not. The music connecting us as it travelled. The lights went down and the Hall lit up with magical sparkling lights to create the feeling of far away places out in the universe and movie magic as they played ET. I felt her. “I’ll be right here” this alien sent out to her. It was wonderful as I was transported through music that I love. When Time played I thought of the original intended recipient of that ticket and felt a real sadness. My daughters favourites being different to my own which she shared as we walked back through the park after, but I felt the connection with her as I sat there in the moments I knew she would love. I remember taking P’s dad to something similar after his mum died. Just the two of us. He held my hand part way through in his emotion. I took him there as a distraction and also a place to feel his sadness. It showed itself in that hand holding moment which felt very beautiful as William’s, Schindler’s List played. I remember these things because those little details really mean something to me. I am glad that I shared that with him. He was the best replacement dad for me and always made me feel like I was a totally a part of his family even when I wasn’t. I treasured them both so much. I will always treasure the letter he wrote to me. I miss them both. They would have wished to help in this. Perhaps she wouldn’t feel like this if they were still here.
On Thursday morning I felt completely exhausted. Those two days of intense heat taking everything out of me in making it through a moment that I knew would be hard. The levels of gentleness, calmness and patience rising to their highest levels ever too. I found everything in me to see us through it. Knowing that the challenge for her felt off the scale. She showed her anxiety and stress to me the day before in all its high alert build up. I prefer the news to not be on, but the social media panic is unavoidable for her. That kind of heat for a person dealing with extreme anorexia is the stuff of volcanoes erupting. Only that volcano began to erupt the afternoon before in all that build up. I could see it coming. Just little tremors. But I knew it was coming. And yet when it came I wasn’t prepared for it but I felt it in a way that left me going to bed knowing that I had to find even more. Sometimes in those moments when I think I have absolutely nothing more, a surge takes place overnight and I find it. I don’t know how. But I find it. Maybe just because I have to. Because it’s her. The eruption producing an attack on me that I have never experienced in my life before, despite the fact that I have received many a good beating when I was a kid. But this illness showed itself at its full rage. Having to separate my daughter from IT is the only way to live through that as it kicked me, punched me on the back of my head many times and bit my arm. It is the most aggressive it has been and her shock in that left her turning it all back on herself and on the illness. She is unable to make the same separation. It was the most awful of moments that left her completely distraught and left me injured. It was completely out of control and those punches to my head were fast and unstoppable. I felt it’s full force. And then all her shame and guilt and distress. I don’t want her to feel that. It’s not hers to feel. It is the power of this illness. I tried to take it away as I stroked her hair and cuddled her before she went to sleep. She didn’t eat from lunchtime onwards. The illness taking a victory. The whole thing falling apart in a moment. It was one of the absolute lowest points in this and left me feeling completely depleted, hurt and so upset and knowing that I had soaring temperatures to contend with for the next two days. My own levels of anxiety needing to be hidden. When I say it’s hard I feel like I’m complaining. I’m not. But moments like that feel brutal. But it just makes me more determined. Sharing with the psych at the clinic who already knows how this works. But she knows that in the main I am able to contain it. Eventually some people can’t cope and make different choices. It’s hard and scary and upsetting in those moments. I am coping.
Feeling both of their anger and frustration being directed at me. His making hers feel acceptable. The exasperation in trying to cool those flames as he fans them but I’m hopeful the counselling will help in that. He understands that his anger doesn’t help. My calmness is off the scale but in moments I feel the mental exhaustion in that. But I feel the movement and progress as she hovers just below 40kg and P starting to get help will help her to get well too. I feel hopeful that it will make the difference required. I’m not crazy, unhealthy, down trodden or weak. I’m just absolutely dealing with what this is. Properly dealing with it in every way. Like a one woman army. I’m a person who understands what is required to beat this illness and I’m doing everything I can to help that happen. It’s my focus in it all. I’ll get to me at some point. Maybe! Possibly! But whatever. I’m fighting for her sunshine with every little bit of sun I can create in myself. And when her sun eventually shines on me I will feel like the happiest person in the universe.
Somehow we made it through those two days. My relief as we swam at the pool for ten minutes to cool down and then I saw the sun disappear through the window. It left me sitting on the swimming pool steps with my eyes filling with tears. Feeling so proud of me and my girl in making it through what felt like the longest two days ever. Not quite sticking to that whole plan but as close as possible in that intense heat and without a single eruption. It felt like a truly massive achievement especially when the power cut took out all those fans.
Meanwhile in other thoughts …
I still find little external inspirations and In moments I see or feel something really wonderful that reminds me of kindness and courage. Like the young boy I saw on the tv who travelled on his own from Afghanistan and was fostered by two amazing people who helped him. As cricket provided his happiness and feeling the heartfelt care of Freddie Flintoff who wished to help him too. All the traumas of this boys life seen by someone who wanted to share his same passion in life. Their connection cemented just in that. It felt very beautiful to see them sitting together and Freddie’s wish for him to be everything that he wished to be. Wanting to share what he had with someone who didn’t. Little things like that lift my heart. Sharing your fortune with another because it just feels good. Just because it can make a difference.
And lots of little happinesses sprinkled amongst this illness. Like the present brought back for me by my Polish neighbours as a Thankyou for feeding their fish and watering their plants. I like them. The musical composer and the furniture mender. They have interesting stories of the past before I was born and what Poland was and is now. They’ve always lived above me and I love listening to him play piano. Giving me some local polish vodka and macaroons and a book about Poland because of my interest in them and the place they grew up in. Their thoughtfulness was so appreciated.
Or my mums message telling me how her and T had bumped into Prince William and Kate and their kids in the Isle is Scilly and having a ten minute chat with them. Did make me laugh. I could just hear my mum just being herself as though he were her next door neighbour and asking after his nan. If you’re gonna celebrate the platinum jubilee might as well rub shoulders at the top.
And then other sadnesses. The 12 year family member that I sat with a few weeks back in her bedroom for an hour as she shared all her crystals with me. Ones for confidence, self love and protection. Making me a little bag of them that I now carry in my bag. As we sat on the floor doing Angel Cards I told her “I have these too.” My mum gave them to me. She felt happy in having someone who shared her love in these things rather than Just laughing at her. The girl who has lots of cuts up her arm where she releases the pain from those who are bullying her at school. She doesn’t fit the version of “beauty” as defined by society. As her “friend” took a photo of her while she was sleeping at a sleepover and then distributing it beyond. As people showed her in the corridor and laughed at the “fat girl”. And this friend shared that, so that what? She could be part of the crowd and popular. Throwing her “friend” to the wolves and leaving her isolated in order to elevate herself up to a higher place. Leaving this 12 year old feeling completely worthless and not wanting to go to school.
I think the bullied go one of two ways. They join the bullies or they wish to help those who are bullied.
And then thinking about the victories. My friends boy who was also bullied really badly at school and watching him In a show with all the friends he made at drama club. Another bunch of misfits who wrote a show for themselves that playfully showed all their own insecurities and flaws in a way that were celebrated and brought to life through 80’s karaoke in which not one of them could sing or dance. The most joyful thing I have ever seen in my life that made me want to be part of their gang. Because you didn’t have to fit or be societies stereotype of what is cool or clever or beautiful or rich or any other element that makes us more desirable to the majority. You only had to be you and in that you were special. Written in a way that didn’t have that condescending and un genuine feel that can come through an adult version that sits behind many a thing I see. They were living it. They knew what it actually looks and feels like. They knew they weren’t accepted as part of the crowd. They cared but tried to laugh it off and not care. And in that they found each other. I care but try not to. Knowing people are very fickle. But I really care in how it affects kids. How it has affected my daughter.
Why is it so hard to be kind to each other and look out for each other? And to treat others how you would wish to be treated or even just someone you love to be treated.
And the escape.. I have written a lot about Stranger Things. A programme that is really popular and I love too. I love it so much on so many different levels and only just making the connection of eleven, which was when I felt most like a superhero as a kid. I could write all day about my love of it. It’s subtle throwbacks all over the place of a time I lived through. Sometimes it can just be seen in a camera angle of a rehashed version of an iconic movie moment. I see every film and tv inspiration meshed in Along with all the psychological details. I love how that is depicted. But in its very Stephen Spielberg and Gooniesque way there is something for me just in the randomness of the group of main characters who are so courageous and loyal to each other as they risk their lives for each other and something more than just themselves. It has provided me with so much inspiration especially the last series where our hero questions herself in being a monster or a super hero. The psychological elements that can be related to by many a kid and also a middle aged kid.A master piece in my opinion that has lived in my own imagination. Feel very connected to their way of thinking and expressing. The Duffer Brothers to tv, what Matthew Bourne is to ballet.
Anyways a lot of ramble which has nowhere to go.
I found this song the other day and it made me think of my girl. I loved that “simple” was so beautifully sweeping and epic. Sometimes in little moments when I look within myself and think about the real differences I have made for others, that is hidden away and not seen by the many and only comes with a title of human, it reminds me to see the beauty in all my trying and struggling and battling. Perfection doesn’t really exist. It’s just a facade. And when listening to this song I felt how my own simple song has evolved through this. And just for a brief second I felt my own symphony.I hope you feel yours too. Because simple and imperfect is special too. And the only cool I’m loving today as I sit on my swing and write is that gentle breeze that is blowing through my hair.
Its funny isn’t it. Losses come in all sorts of ways. Today a blog I always liked looking at, just in having images of beautiful places, had shut down. Gone. Just like that. In it’s very small but big way for me, it was a connection for me, to something beautiful beyond the world I live in. A world that over the past six months has felt the most difficult and awful of my whole life. My daughter’s illness reaching a stage where the possibility of her no longer being in this world was so high that I couldn’t even breathe. Her BMI at the dangerous life threatening level of 12 and seeing her so emaciated, that bringing her back seemed completely impossible and insurmountable. This illness is an absolute killer and it nearly did. What has lived beyond that and most specifically over the past two months has been absolutely horrific.
Sometimes those images were the things that made me think and inspire me in trying to reach a world beyond. And it felt like it was just taken away. I guess I could google places but I liked the different versions that were picked out. It made me really sad last night in what seems such a little thing. Sounds so silly, but it gave me tiny moments of pleasure in amongst a life that every day has felt so difficult. I guess it says a lot about the life I am living and how the simplest things can make all the difference for me, in lifting me in that.
I’ve been thinking a lot about my Nan. When I saw my dad he said that she was the kindest person he ever met in life. She really really was. So so kind. A very gentle and lovely person but behind her very tiny and quiet exterior she was so strong. Like a powerhouse strong. I didn’t even realise how strong. You don’t when you are younger. When you are just a kid and haven’t really lived a life you don’t really understand what goes on behind the scenes in caring for and protecting others and what that takes. In being responsible for more that just your own health and happiness. Especially when you are not sitting at the top of the ladder and everything has to be worked and struggled for.
But as a woman who has had to deal with so much responsibility and so many really difficult things now, I completely see it. Completely see her in all the invisible and hidden but truly amazing things she was. Things that inspire me all the time as I continually try to find what she had and kept her going. She was the nan who loved watching the teletubbies. Makes perfect sense to me now, as she escaped into LaLa’s Land. My mum tells me all the time in how proud she is of the person I am and have become but most especially right now. She also tells me that my Nan would be incredibly proud of me too. Something that really lifts me in knowing what happened to her in life and what she went through. Despite the fact that only close family attended her funeral, she was so loved. Soooo loved. The most unflashy and unassuming person you could ever have met in life as she took care of my cousin after his mum committed suicide. He found her with her wrists slashed. The woman who was once so full of fun, my mum told me, but was abused for many years by her narcissistic policeman husband who completely destroyed her. Her son suffering with schizophrenia. I can’t imagine how my Nan dealt with that every day, but she did. And she never moaned or complained. And was always so grateful for nice things with her brothers and sisters and loved being with us. Especially at Christmas when she would drink a little ginger wine and watch some Jane Austin. I absolutely adored her. Remember when I was little and she brought me a little tiny plastic table and chairs with teeny tiny teddies. I love them and played with them all the time. She always asked after Jerry, after I once told her that she had sat on top of him on the bus. ”Move up Jerry” she said. She was completely down to earth, living on her council estate, but with such a gentleness of class that didn’t really fit in the world she inhabited. And always wearing her little pink jumper and slacks and comfy shoes. Bounding along like she was still in her twenties. I always told her that I loved her but I wish I had told her just how amazing she was. I think perhaps I did without saying it as I stroked her hair and held her hand in hospital and read her the newspaper as she lay unconscious before she died. Never knowing if it was my cousin who had made her fall down the stairs. Even if it was she would never have said.
She loved to write too. She won a prize for it when she was at school and won a book. Charles Dicken’s Little Dorritt. She couldn’t have been any more Little Dorritt. It is a story of changing fortunes and how those fortunes change people. It depicted the arrogance and pompousness of those who had or found themselves with money but also what happens to some when they lose it. I’ve never been wealthy but I’ve certainly known what it is to lose it all. It made me think of a really lovely girl I met many years ago who was dating my friend. One of the many many girls he dated. He is a lovely fella but he didn’t treat women very nicely. Alot of them he said liking him because he had a lot of money and they liked the lifestyle that he could provide. I think liked him too. He was reasonable looking, interesting and fun. But he often said he wondered how much the birds would like him if he drove a dust cart. There’s some truth in that. I’ve known alot of women and men where lifestyle matters more. Anyways she went on to marry another rich man. But the other day he committed suicide. He had lost it all and was up to his neck in unpaid taxes and so he left her and her three children under ten behind. With absolutely nothing. I felt devastated for her. Not that we were close. She was one of many that I met. But in knowing how nice she was and how completely life shattering this must feel for her. The fortunes of life suddenly shifting and leaving her three children fatherless and her wondering what to do. Far away with no money or security with three children to look after. The other side of what money can do. Life can be very harsh and just like that you can find yourself in a desperate position.
I have thought a lot about how for some it is easier to love people when there is a comfortable and good life attached. But how quickly it can disappear when it’s not. I think me, my mum, my Nan and my Gran missed the boat in that version in all our romantic notions of love conquering all. Maybe it is because we never grew up with money. Although my Gran did but spent her life moaning that she should have married the man with the car. But I still believe in Love conquering all. I married P because I loved him as a person. He didn’t come from money and spent most of his at the pub, in the bookies or going all round the country and Europe watching his team play football. I didn’t come from money either and have never cared about it until i had none and it was all about security and survival. And that was because I had a daughter to think about. I think my lack of care in money beyond the basics was because my dad was and still is very lifestyle over love. I heard it in everything as he talked about his life.
And actually the only other person I ever fell in love with was for exactly the same reason. I liked him just in who he was. The stuff that sat underneath. I believe that he is more well off than he ever shares. Comfortable in the security provided that allows many choices in life. But I never cared what life came with him. It was only ever in wishing to be around him. To spend my time with him. Just because I loved him as a person.
In fact the majority of blokes I’ve ever met with money have been pompous and arrogant. As though having money makes them better. And in that they are worth more. In my overall experience of life and people I’ve met I’ve often seen in fact that it actually makes people less grateful in people and things that really matter. I’ve met so many wannabes. The crowd is full of them. All clamouring for a lifestyle. The easy life. The good life. The life that is bought. But that version has always felt very soulless for me. And feels like convenient love.
But what I’ve noticed more recently through the worst moment of my whole life is that despite how difficult life currently is, how awful it has been and how much I wish things were easier and better for my daughter and me, and how much I cry for all the stuff that has really hurt, I actually feel so much better in myself in the more simple version of life away from the crowd. How little I actually need any of it but how much I really look forward to or really enjoy to the absolute max any tiny thing that feels lovely. Everything good feels really really special. Everything. I don’t take one single thing for granted. And that reminds me of when I was a kid and had I had nothing. But how dreamily happy I was when I carried my goldfish home from the school Fair. I remember lots of people questioning why I gave up my really good job when I had my daughter and did little jobs instead to make money while volunteering as a teaching assistant and running after school clubs for kids dealing with difficult stuff. Would spend my money on buying creative stuff to make it fun or little things for individuals who had shared what made them happy. Like the Manchester United top trumps for the kid who always spent the time there playing football all on his own. Until I would kick the football with him. It made me so happy in seeing him show and share the cards with the other kids. But my favourite thing was having all that first five years with her every day. Where P would work his job around trips to the seaside and sun £9.50 holidays at a caravan park. I loved having teddy bear picnics in the tent in her room and doing the Hokey Cokey in the church hall at mother and toddler group. None of it was flash. None of it cost any money. But it was all really really happy and wonderful. And somehow in amongst this modern worlds obsession with having the perfect life and what “more” looks like I lost sight of the fact that actually my “more” was so much better without needing anything. Finding yourself back to the very basics when really struggling in the worst of times certainly teaches a lot about what really has value and what is just a cherry on top. Something that was given clarity when my dad told me that “getting my daughter back is the cherry on top”. How differently our cakes are made. The opposite in fact. As he talked about his life it was all about what he had done, who he knew, how successful he was at work as he gave me a long commentary of being head hunted by several places and offered more money. And where he had been and that even his shed was purpose built, fully insulated and heated with electricity and by the sounds of it, the size of my actual home. The people that loved him just being cherries on top. I felt quite empty as I listened to it all. Lifestyle over Love. He’s not alone in that version.
And then I compared it with mine. Where the people I love and care about are central to my cake. They are everything that matters to me. Family, close friends and things in my life where I have felt I’ve made some kind of real difference to a persons life. All surrounded by the beautiful and natural stuff of this world like the sky and the sea and the trees and mountains and clouds and stars and flowers. I could go on. The other stuff just being nice to haves. The crowd just being momentary, jobs being a means to an end and all the many distractions of life being the little bit of sparkle on top. Nice to have but I can live without. But when I have that for a moment wishing to share it with those I love and who love me. My pain only ever in losing people I love. The other stuff is replaceable. I realised in my dad’s cake, I was replaceable. I was just an extra. How can your own daughter just be an extra? A nice to have on top of what matters. Stuff. It made me think of my relationship with my own daughter and also what she shares with her dad. I felt so glad that P is her dad especially right now. He is struggling in it so much but she is more important to him than anything else beyond as he gave up that job in order to be more available. I was grateful for his commitment to what is more important too. When the stakes are so high there is no room for selfish. Both putting ourselves in second place to her as it should be. It has made me realise as I listened to my dad that I’m not less. But that for me his cake, even though on the surface it looked so much better and more sparkly, wasn’t more. His cake was him. And in that all that better felt very superficial and empty. But perhaps for him it was enough. We are all made differently. But it would never be for me. And I also felt like I was worth so much more than being a cherry on top of his cake. And in that moment I no longer felt that feeling of not being good enough. It was a very empowering moment to feel the immense worth of my very beautifully real and substantial and soulful and loving cake. And that despite its squashed and messy appearance it contains some pretty amazing and epic flavours many of which belong to those other beautifully real and substantial people I hold close. There was a lot of peace and closure in that experience as he hurriedly stopped me halfway up the stairs to the departures and blurted out “I love you M. I have always loved you”. Words that I had said to him so easily at the beginning of that few days but had taken him all weekend to build up and be able to say. I took them like a gift but felt happier in him being able to feel and say them. It felt really difficult for him to do. I wondered if he had ever really felt really deep love even though he told me “we always had a special connection. You always held my hand.” I came home with a lot of phrases that he shared with me that made me think about who I am and what I give. I felt really proud of who I am. I absolutely a girl who loves. For all the hurt I have felt through the years in how he treated me and his absence for the majority of my life, I had never stopped loving or caring about him. And maybe in his own way he hadn’t either. He just needed and loved the other stuff more. The crowd of admirers mattering to him much more than his own children. I think he has always just needed to be loved. Not mattering so much where it came from. Needing to feel like he was more. But I saw just as I did when I was a kid how much he struggles in giving it. He’s been married three times now and has had countless younger women along the way. But he said my mum was one of a kind.
For me love doesn’t just vanish. When it’s real and felt inside, it stays there forever. It has its place in your heart. I never stop loving people that mean something to me even if I have walked away in moments in not wishing to be hurt. To some that would make me a fool. But I own my own feelings, and my love is as solid as it comes. It’s just sometimes, when it isn’t reciprocated, you have to know when to let go of hands. I was called bitter once. One of the most hurtful things ever said to me. I think it was meant to hurt me. I think perhaps some relationships are unhealthy when one cares more than the other. But I am certainly not the devil. Not even close. Just different to them. I felt angry at being used as one of many time fillers and distractions in their game of boredom on the way to “better” and in how that impacted on me as a person, my life and subsequently the lives of others. And very sad for sure in losing what felt treasured by me. But never bitter. Because for me they were huge part of my cake and my “better”. The disappointment I think must have felt similar to my nans when my mum told me of a similar experience in her life. “She was heartbroken” my mum said. And so was I. Sometimes we have reason to protect ourselves and our hearts and that was one of those occasions.
Little Dorritt was her favourite and actually it’s one of my favourites too. She could not have been any more Little Dorritt but without the happy ending. But perhaps when we both read it we dreamed and wished for that happy ending. Sometimes just the dream of something is enough to sustain a person when they are dealing with what feels difficult. I see a Robin everyday that sits close in the early morning in my garden. I always feel like she is with me. And I always look up to the same star in the sky at night which is very faint and hard to see but I always find it. She was never a one to be seen by everyone. T
Today is the first day that I have a moment to myself. My daughter spending the day with her dad. It is a moment of respite for me in being so exhausted from trying so hard. But that trying has and is making such a difference as her BMI has now reached 15. Extreem categorty. Needing to get to serious and moderate before making it to a healthly 18.5. But in two months alot has been achieved. I feels right to jut note that. That huge decision in keeping her out of hospital has paid off both physically and mentally despite how difficult that has been and still is. Difficult in a way that is impossible to describe. Life shatteringly difficult. The illness threw it at me yesterday in telling me “you have no life, no job, no friends”. It was right other than the fact that actually I do have a few really deep and meaningful and close friends that I haven’t really had any time to spend time with or talk to. Just little connections via what’s app that mean everything to me especially in the extreme loneliness of being in such a situation where I don’t have time or energy for any life beyond. Today I plan to catch up on a little sleep if I can. But those little messages have been the difference in not feeling completely alone in it. Kindness is such a beautiful thing but especially in a moment like this. The moments that I have felt kicked when I was down hurt me so much. Why would anyone do that? i have thought. I’ll never really understand that. It’s a source of sadness but one I am trying to ride over. Always reminding myself of who I am as a person deep down inside. But when you are fighting for something so much bigger you can’t feel it. It’s a weakness that you just can’t afford. But I know it is there and it really hurts me in the moments when I feel really tired and lonely. Eventually in better times to come I hope it will not hurt quite so much. It’s so much easier to move on when you can move. But I always believe that we will reach that “better” eventually, despite the last couple of day being really tough and like a few steps backwards.
But for a moment and through the tunnel vision we did have that moment of better. A glimpse of what life can be if we keep climbing. Something that right up until that morning felt undoable as the illness kicked out in telling me that she didn’t deserve it. Oh she deserves it. She has always deserved it in being such a wonderful and kind and loving and caring human. She’s just had to really fight with me for it while P has stood like a back up in helping me.
It began a few weeks back with a trip together to the moulin rouge with L&M. I thought we wouldn’t get there. Her hands round my neck again in the illness not wanting her to eat before we left. Trying to ruin it for her, by wanting me to say that she didn’t deserve to go. But I ignored it and eventually got her to eat. Knowing that the illness would win in spoiling her happiness and then being able to provide comfort by not eating. . I know how it works. Its hard to cement the boundaries in that. But I took her and her gratitude and happiness in making it there created a sublime happiness for me as we sat and held hands as she ate a little ice cream in the interval. It can be done I thought.
And then last week that tunnel vision took us to a beautiful island in the Atlantic despite the illness”s last ditch attempt to tell me it couldn’t be done. It could. It was. As just the two of us took to the sky and found ourselves in a peaceful, simple, gentle and naturally beautiful island of sea and tropical mountains in all its most natural god given beauty. A place where gentle and warm and kind and friendly people lived. A place that felt like a pre pandemic world in all its simple ways of living. A place where without a phone to check messages or social media she told me “I don’t feel alone here”. An epically life altering moment as her mental health improved ten fold. As she felt like a person again. A person who ate two pain au chocolats for breakfast. Where she adventured in cable cars and Japanese gardens. Where she swam in the sea and trekked through the mountains high up in the clouds as though we were in a tropical Jurassic Park. Where we bounced around in the jeep stopping at waterfalls and swimming in natural volcanic pools. Where we found ourselves entertained in cabaret at the Ritz by a former moulin rouge dancer of the past and danced together before watching the fireworks over the sea. And where she had her little Annie moment (as she called it) as we walked into our hotel room that made her feel like she had arrived at Daddy Warbucks house. “I feel like a rockstar”.
I couldn’t believe our luck again in getting something so wonderful on a budget. I know how to find a super bargain. Years of practice I guess. Making those pennies stretch for a little moment of sparkle and luxury. but never have I ever seen so much gratitude in a weeks holiday that was struggled for in every single possible way. Where for a moment the illness relented a little and was quietened as we spent that time we had been missing together. Just the two of us living an adventure that as our sign says “will last forever!!!”The most perfect and magical place to be in that very moment. It couldn’t have felt a more perfect place to be in that moment. It had every simple element required that made us feel safe and comfortable and home on the first day. it was like we were meant to be there. Destiny!
Still having to manage things around it but so much easier in such a peaceful and beautiful environment where everything and everyone felt so kind and genuine. A very different feeling island to our own. Where the majority of people lived very simple and gentle life. we loved absolutely everything about it there.
The horse Funchal that I placed a tenner on a couple of days before, that won at 9-1 giving me the sign and a little extra cash to take that leap of faith despite the illness’s attempts to sabotage with continued aggression especially the night before. P”s concern in me being alone far away in that and saying that I shouldn’t go. I queried it right up until the moment we left. Saying that I didn’t want to take any more risks in life but sometimes you have to. And just like keeping her out of hospital it felt like a risk worth taking in trying to help her to climb over this illness and find her way back. Taking this leap of faith because I trusted and believed in her. Feeling that if I could get her there it would be a game changer. A new hopefulness for better. A better that feels worth taking a risk for. And to not go would give the illness more power in providing a reason for wanting that dangerous comfort. The illness hasn’t gone away and now we are home we are feeling it more again, but her trust in me as her mum is what often sees us though. And every little bit of progress means everything to me. If I say I’ll try or I’ll fight for it, I always mean it. No half measures.. Come what may!
And it was absolutely worth every drop of fight. As just for a brief moment we found ourselves in a place where we both completely fitted without needing to fit. Where she didn’t feel Alone. Where life felt very simple despite the complications of this illness. All physical aggression subsiding.
When I told the young cheeky fella who drove our jeep why it had become our favourite place he told me “yes it is the best island ever isn’t it.. and the people here are all really lovely. But you’ll find that the higher up the mountains you go the more lovely they become”.
Words that have stayed with me ever since returning. We still have such a long climb but just for a week Madeira made ir a very happy girl which in turn made me a very happy if very tired mum. It’s the most grateful I have ever been in life in seeing someone smile and feel so happy and not feel alone.
An adventure that she said has been her favourite adventure ever. I felt it too in all it’s work and effort. An adventure that money paid for but the feeling created was a shared love of each other in the simple and natural surroundings that we both really love and value. Providing the simple things that really matter to us in all its completely natural beauty and with a little bit of sparkly cherry on top. It felt so very special, so very perfect without being “perfect” and left us feeling that Truth Beauty Freedom and Love still exist even amongst this illness
Couldn’t have asked for anything more in that one week that provided a moment of real happiness, and motivation to want to get better, before the battle recommenced.
Hang tough with me Hidden Gem. We will make it to the top of this mountain. I believe in you!
The first time that my girl put her hands round my throat felt really scary and horrifying. How could the gentle person I know do such a thing? She would never and has never hurt me in the past. I always remember that I’m not dealing with my daughter. I’m dealing with an aggressive illness within her. She appears in tiny moments in between food but is being suffocated behind this illness. An illness that is absolutely raging. Anger and aggression very common in this illness and finding a better outlet for it an absolute must. My duty of care to her and me in keeping us safe is just as important as helping her to eat. As her weight very slowly increases her mind will become more rational but it’s anger and aggression will still be there in not wanting her to get better. It hates weight gain. Pushing her back the other week before I stood up even stronger. I will not let it destroy her. Which makes me it’s number one target because I am the enforcer of the food plan but also the safe place to let it loose. It absolutely has to be let loose. Before this illness, any frustration would have been released in exercise. But she isn’t allowed to do that. A bit of yoga is ok and helps a bit but it’s not enough to combat the aggression and power of this illness. No matter how mindful she is in that moment. She tries so hard to control it when really she needs to release it every day in every moment rather than letting it build up to a hands on a throat moment. It’s work in progress. But very important work which will also take time as I remind her that physical aggression on herself and me isn’t acceptable. Taking time being a must but isn’t always that easy with appointments and fitting in all the meals. I can take it while that work happens but it’s not pleasant. And sometimes it gets to me. I’m only a human and a very gentle one at that. I don’t wish or deserve to be anyone’s punchbag. In fact sometimes I wonder what I ever did to deserve so much difficulty, challenger and life crushing things. I’ve never hurt anyone in my life. Always been a protector of others. Never played games. Never used people. whatever did I do in my last life?!
I was just a very happy dreamy girl who found herself feeling very alone in life as others struggled to deal with their own challenges in life. But I always have tried to help. I don’t desert people in their moments of need. It’s just not my way and never will be. Letting go of the hands of people that hinder not help or that don’t treat me in a way I deserve. But more so, in those who simply didn’t care about me or have used me. But with her it is completely different. Completely unconditional. And I am standing like a giant for her in helping to get her through what this is. She certainly doesn’t deserve it. Always a kind and beautiful and lovely person who has always looked out for and cared about others but has been hurt directly and indirectly by all of the difficulties of that chapter. Trying to protect her through it all. And all by myself in that endeavour during that time. But it was too much. I am only human and it affected me so much too. The life that happens and the life we make happen having such devastating consequences for both her and me. A few times I have thought about the hospital admission but we get through those moments and then she eats. And I take some heart and encouragement and motivation just in that. Because protecting her is my number one priority. No battle comes without scars and they are building up in me but I’m so much stronger now than I was a year ago. No time to be her “friend”. It’s all mum. Even though I know she misses what we share. As do I. But unfortunately I can’t be everything. What I’m doing is completely exhausting and constant. I have absolutely no life beyond. There is no time. I completely miss her and that time with her too. But again, I take comfort in those little moments when we cuddle or I stroke her hair or we do something nice together just for a moment, and also comfort in the fact that her dad s the provider of cuddles in big safe arms, and little walks and chats after a difficult moment. I don’t know how anyone could do this on their own. We are having to be in this together. I feel her dad’s respect for me in what I’m doing as he bought me tickets for Einaudi In October to say thankyou. In remembering how much I had said that I loved it when I went to see him in Milan on my own. That feels like a million years ago now but reminds me of the happy dreamy girl who sits beyond this warrior. I have both in me and everything in between. I believe now that there is nothing I couldn’t do if I wished to. It’s only life that prevents that but who knows what might lie ahead of me. And thinking with my daughter that sometimes being a real friend is being there in the absolute shittiest of moments as you fight side by side with them to get to a better place. Never giving up in that. I’m absolutely her friend even if a foe to this illness. And she knows that. I’m a tough cookie despite external appearances and have learnt how to protect myself and her in this. I tried my hardest to protect her in all of this. And I know that I always try my best. Always!
I have always tried for others but sometimes I lose. Often trying harder for them than I do for myself. Because for me people I love, matter more. I’ll always be ok. I’m a survivor. And there is no failure in trying. But sometimes I need others to try a little harder too. Never ever asking for what I’m not prepared to give. Some people not having that capacity. And that’s ok even if I have often felt let down. But never let down by her or those really close few that hang in there for us. Their resilience and steadfastness feeling inspiring to me and making me love them even more. I certainly have needed to develop a thick skin in this. All my own sensitivities thrown out right now. My sign in the bathroom says “the bravest thing you can do is just to be yourself”. In fact the bravest thing I’m doing right now is helping her to to understand who she is . And every weight gain or bone that is more covered makes me feel like we get another step closer to that. I have evolved a lot though that chapter but massively in the past six weeks. Seeing myself very clearly without others judgements or interpretations of who they think I am, as they place me in a designated box. Sit in your own box. I’m a wild horse. I’m not meant to contained. Definitely feeling everything that I’m really made of. That 11 year old girl would be astounded.
I’ve always been pretty calm. I’ve learnt to be. It’s why I’m quiet a lot when others kick off. Usually about really trivial stuff. As I sit there thinking “you obviously need something to worry about”. But this is whole new levels of calm and patience. I feel like I should be more angry myself. But I’m not really. Just in little moments. But really I just feel the sadness of it all. But at some point you will definitely find me or actually not find me standing on top of a mountain in a very remote place, screaming it all out. Because I have no wish to my take anger or frustration out on others. We all make mistakes. I made a huge one six years ago. The consequences of that have been so far reaching that I often wish I could rewind time. But I can’t and I am a product of so many good intentions that were destroyed both by life, circumstance and the selfishness and carelessness of others. But in the end I was the naive girl that allowed it all. I definitely will never make the same mistakes again. Wishing often that the girl sitting on a barrel had just got up and left. But how was she to know in all her open hearted cluelessness. Just being so happy to be there, make new friends and a with a wish to not feel all alone in this life. But to be able to share in it, just as her. Rather than just be all the things that she had to be for everyone else. Was it too much to ask? It appears it was for the girl who didn’t have the privilege of a safety net and lots of similar opportunities beyond. This was her moment. Her adventure. Her “better”. And the result of it all, left her completely crushed. Stolen dreams that will never really be appreciated as much as they would have been by her . Just another little opportunity amongst many. How they must have laughed at the silly dreamy girl in all her naivety. But at least she followed her heart. I followed MY heart. And showed it at every turn in all its childlike magic. And had the realest and truest of feelings. Just in that I will always feel really proud. Life and the actions of others conspiring together to ensure that she ended up right back where she started. Worse off in so many ways but better in the ones that really count. The stuff that sits within. I never look in the mirror with self loathing. Only I know why I made every choice and decision. All of them in protecting my girl or others. Other than one which was based on love. All those decisions in protecting her felt completely “right” even if they weren’t always right for me. But I sure do know how to build beautiful castles in the sky. Even when life is really difficult. I built them for a moment and they felt very real. Well at least to me.
But now I just want as peaceful an existence as is possible (right now not very possible at all other than when I’m sleeping) but in the future a totally peaceful existence. Doing all the things that I might love. Looking after some of my wants and needs whilst still looking out for others. I’m all done with difficulties and challenges and aggravation and games. I was totally ok before it all and I will be again. Still often feeling very alone in this world in not being able to share the very basic version of who I am inside. Perhaps I need to get a dog. I hear they are very trusted and loyal companions that only require love and a little attention. A little like me really. Just have to get through this most biggest of challenges first. Anything beyond is pipe dreams right now. And no idea how long it’s gonna take. I’ll spend the rest of my life trying if needs be. Because I’m completely committed to her.
Missing the parties of the weekend in my continued endeavours. I imagined that the happy dreamy girl would have tried to bake a squashed Victoria sponge and shared it with those who didn’t care much for perfection while downing a few Proseccos. Instead I raised a cup of PG tips to the dutiful Queen while giving a nod to the Queen of Hearts Lady Di. Thinking how she also suffered with an eating disorder. A beautiful and kind and gentle woman who also evolved with life and challenges but fundamentally just wanted to love and be loved, look after her boys and help others. Inspired by them both in their very different ways. And reminding myself that you don’t need to be royalty to make a difference. I’ve always been a stand up girl and when the time comes I will be that same dreamy happy girl again. I can hear her much more clearly again inside. Just need to get my girl back to hers first.
You can’t keep a good girl down. See how my little heart is growing again.
Every morning when I wake up, the first thing that I feel is that I’m so grateful that she is in the room opposite. Soooo grateful. I love her so much. She is Irreplaceable!!!! Protecting and helping her is my whole life right now.
The first thing I think is how can I be better for her today. And then the day begins. As I get up and get ready to repeat but with little adjustments. The plan doesn’t change but the day never goes to plan and there isn’t much time for anything beyond. But somehow we find our way through it in all the delays and incidents. Every day looks different in small ways and sometimes bigger and tougher and every now and then, when a full scale military operation takes place, we get a bigger version that allows her to be out somewhere. It’s hard to do. We couldn’t do it every day but with planning has been possible. Working the supplements around it because she doesn’t like taking them out as she feels embarrassed. But it is those supplements that have kept her alive and out of hospital. It is a constant battle in this re-feeding stage but the doctor telling us that she now feels more hopeful in our version even though she is still in a very serious condition. I could have cried but I didn’t because I can’t show any weakness in this. Any feeling that we can’t cope would leave them reconsidering. I am coping. Just! P is struggling more. I feel his frustration which he finds hard to contain sometimes. It is tough. I knew it would be. He didn’t see the version so much last year. He wasn’t really in it at that point as I dealt with it mainly on my own. Her condition much worse now. It is upsetting. I feel it. But I’ve learnt now from experience and I’ve had to toughen up. Because this illness eats you alive if it senses your weakness. I am hiding mine in most moments but sometimes it is so bad that we all end up crying together. It has also required me to build a barrier around myself in order to protect myself. I can’t afford to be upset by anything or anyone beyond while dealing with this. Needing to be a giant for her that is totally in charge. Taking no shit right now. I will return to my former gentle soul when we have kicked this illness into touch. No time for a dreamy version. It’s all too horrifically real and important to run away from. And a lion heart is required. But I do feel the huge sadness inside. Sometimes overwhelming sadness that I let out in an ocean of tears that have accumulated over a couple of weeks. But only when I’m on my own. It’s impossible not to feel sad when I think of who she was before and what this illness has done to her. True grit required in this daily slog. And keeping emotions in check so that I can keep on ploughing and replace all emotion with total rationality.
I’ve never been so rational in all my life. Researching, finding what helps. BEAT and MIND being best friends for me in being able to to chat things through with people trained in this illness who understand it, seeking legal advice and advice for carers and just generally hearing those volunteers who care as I tell them what I’m doing and they give me a lift in letting me know that what I’m doing is everything they suggest. And always ending with telling me to take care of me too. No time for that although I always put on a nice shirt and earrings every day so I feel like a put together human. I need their care sometimes as well as reassurance as I question myself constantly. Not in that “self doubtful2 way although in moments I do, but more in a healthy “questioning in what I’m doing” way. To reflect daily on her, her progress and what we are getting right or wrong. It’s also just a sign in how much I really care. P looking to me for answers. I don’t always have them. It’s trial and error and trying my best. Something that is a massive part in how I’ve lived life and especially in relationships. Only ever giving up in those when I know that same care isn’t reciprocated. P thanks me every day. I don’t need it but I’m still really grateful for that because the pressure to carry it all feels absolutely immense. I’ve been through a lot but this is something else. But I also finally see and feel my own strength. There is nothing feeble about me when there are battles to be fought. Especially when it comes to my daughter. When I think of all the times that people have talked down to me, or seen me as being weak I think to myself, they don’t actually know me at all. Talking strong and being strong are two very different things. I feel like both right now.
Those bigger moments in changing the scenery really help in her feeling that she is still part of the world beyond and more than just an illness that has taken over her life and everything from her. Everything except us. And none of these little and bigger things would be possible if she were in hospital. I see how they make such a beautiful difference for a couple of hours. A girls holiday that has been planned for ages now in major jeopardy but not giving up on it until we get to it. Either another disappointment for her awaits or something very wonderful. I’m striving hard for wonderful. Properly striving with tunnel vision. Wishing to make it happen for her. And I remind her of that every time I push back at this illness and ask her to fight harder with me. This morning being a prime example of that. I know that she is trying so hard. She is epic. I see how painful that is for her. I tell her how incredibly proud I am of her every single day. But sometimes it is so powerful it requires her to fight even harder. Nothing in this is easy not even one little party ring.
I also push back at anything that doesn’t help her in this illness. Always polite but I don’t have time to people please. Challenging versions that hinder. I’ve ruffled a few feathers in demanding more. Not caring what they think of me or what their assumptions might be. I imagine controlling and overly protective mum or colluding with an illness as I was told by someone in a condescending way. I’ve never been controlling of her, she’s had so much freedom in life. Maybe too much freedom that when all those controls came in she didn’t know how to deal with that. But damn right I’m protective of her right now as any mum would be. She is at her most vulnerable and having a person who knows and understands her, in her corner is a mums job. Sending her to nursery, school, clubs, uni and worrying like any parent, but always feeling that she would be ok. Like when she used to get the tube to Central London on her own when she was 12. I would ask her to text me when she got there and when she was leaving to come home but I didn’t want to stop her from doing things she wanted and enjoyed. Encouraging her independence and holding my own worries in her being in a big place on her own. She found alot of confidence in that and knows every tube line like the back of her hand now. Feeling more confident there than in other places. But protecting her from a version where she would be alone and scared and vulnerable. Yes I absolutely went into protection mode. And certainly not colluding with this illness now. I have all the battle scars and bruises to prove that. I’d rather she hate me than lose her life. But I see the big triggers and I try to remove them and replace with alternatives. It makes the job that bit easier. Nothing ever being personal. Just sharing in what I know from what she shares but doesn’t have the confidence right now to share beyond. Being a voice that is being heard as I ask for what she needs. As any parent would in a moment they are just one of many patients. Standing strong in her not being overlooked or getting a lesser version or a version that hinders not helps. We are a family who fly under the radar because we don’t like agro but in this I’m not scared or intimidated in demanding better for her. I pick those battles based on what difference in makes to her and her recovery. And when those things are taken on board I’m really grateful. I’m much better in fighting for others than myself. And I’m fighting for everything and replacing or adjusting what doesn’t work for her or isn’t being provided with versions that I have found through my research. The small details are everything and one size does not fit all.
“Community care in this illness being the best version.” The doctor of the hospital she would have been sent to was quoted as saying that. So I’m trying to fill the gaps of what isn’t available in the outpatient version. They are fantastic people doing an amazing job in something so difficult and I’m so grateful for their support. But the funding isn’t there and they can’t provide everything required. In seeing this illness first hand and the sheer awfulness of its effect on a person, it highlights how poor our provision of community care is in this country. Hospital or Less. And this is a growing illness. I’ve heard parents of kids as young as 7 who are fighting it. I read an article written by news reader Mark Austin whose daughter suffered at its hands. The journey of (as he described it) “the pushy journalist and his A&E wife” as they helped their previously healthy and happy daughter. This illness affecting girls and boys of all different ages and backgrounds. Always seen as an illness of the white middle class. The most comprehensive treatment coming at a high price but not necessarily the best option or affordable for the many and the NHS version underfunded which means accessing a lot of the things required, means being hospitalised. The pros and cons in that making it a really difficult choice for parents and privately funding the missing elements from an out patient version, an absolute necessity. What I’ve noticed at the outpatient clinic we go to twice a week is that contrary to that stereotype of it being a white middle class illness is that I’ve seen many Asian, Black and White kids and none of them are dripping in money. What they all have in common is being very thin, very vulnerable and very sad. This illness is like living with a bully inside you. It leaves a person feeling alone, isolated and worthless.
I’m learning more every day and using that learning to try to be better for her. Not afraid to see my own faults and mistakes and lack of expertise. And not proud to ask for help in what I don’t know or where I need more support. It’s hard to find time for everything. Managing the basics is a full time occupation. But always trying trying and trying some more. It is tiring, scary and difficult. So much so that last night when I was completely exhausted (the past four weeks catching up with me) I started to pass out as I fell towards the glass coffee table. P caught me before my head hit it. And for a moment I heard my daughter shout “MUM!!!!”. This is so hard. Completely shatteringly hard. But I can’t stop. I won’t stop. You would have to have me sectioned. As I keep pushing for every biscuit, every yoghurt, every bagel, every jacket potato. Everything! And join her in them all. The amount I consume being way more than I need or want or is good for me but I don’t care. Doing every single thing that helps in raising her weight. Trying to get her to a place where she is able to hear herself rather than an illness that tells her that not eating will make her worth something. She is worth absolutely everything to us. My life falling away into something I don’t care about. When she is well I will self care. The only thing that has any meaning for me is her life. I’ve had one. She is just starting hers. And nothing will ever stop me from fighting for that. Whatever it takes. If you want to know what unconditional love looks like then here it is covered in bruises. Doing whatever is required to get her to the other side and in amongst it sharing in every ounce of her pain. Preferring her to hurt me than herself. Protecting her with all my might but last night just for a moment I had run out of might through complete exhaustion as P stepped in.
I got up early yesterday to finish another essay that would make her feel better in still being “in it”. If I could dance like her too I would do that too. She was devastated after putting herself through so much and being unable to complete. I don’t care about any of it. What do any of these essays ever prove. That you can write an essay. But she cares. It was her life and her purpose. And if it matters to her and makes her happy then it matters to me. I would put myself in her place in a second if it meant that she could be ok, not worry or feel sad. All I want and need is for her pain to subside and I’ll do anything that creates that. Life a full of so much bullshit. I am so grateful for every single tiny moment that her pain subsides . And when that happens the world lights up for a moment.
Feeling so much pure Gratitude in everything. Realising that my wants and needs are very simple, even more simple than I ever realised before and needing very little from the world beyond. Just those close few that hang in there with me because they care. L like a life saver in those couple of little walks over the last month when I have just rested for a second. Sharing but it’s hard to really describe what this actually looks like every day. Her wonderfulness In watching and listening to things that help her to understand it more and sharing those things with me. Wishing to help. She helps in just being her and being my friend. Knowing she is out there caring. As do my other close few. Not having time to really chat or see people but knowing they will still be there when I can. Knowing that they care about her as well as me. And understanding that I haven’t got much to give beyond. But they will be the people I will want to spend my time with when she is better. Not the good time crew who are only interested when you are providing what they want and need. I feel so grateful for those solid and long term relationships that are made of more. My daughter said to me that you find out who your friends are in moments like this. She is absolutely right. I never needed the crowd but even less so now. It’s all about the individuals for me and if they really care. That’s the community I belong in.
No time to feel all the emotions so I compartmentalise all the sadness, heartache and sheer awfulness of what this is. Reminding myself of others out there who are battling in their own versions and trying to help those they love, survive and survive it themselves. I am lucky. I have a safe home. In that I could not be more grateful. My love of the simplest of things coming into its own. Listening to the birds singing as I sit in my garden in the early morning before she wakes. Looking up at the clouds. I’ve always loved that but it is a proper highlight of my day. Love it! My forest garden bubble coming along a treat. It’s going to be so naturally beautiful. The extra practical help being given in that is appreciated so much by me. This bubble suddenly looking so much bigger and even new real grass will be put down so that the daisy’s have a more beautiful bed. The kindness of others in going the extra mile is not going unnoticed. This forest garden bubble is beginning to look pretty special actually. Like a snippet of the forest being brought in. Everything about it feels natural with some child like magic in vegetable characters and a ladybird and buzzing bee solar lights to be added. Collecting magic where I can. And with a brand new shed round the side I have somewhere for the bikes to live, waiting for when we are able to use them again. I look forward to rides along the canal and in the forest with her. They will feel so very special. I believe that we will have them.
Not working now as I take care of her full time. They are gearing up to give me the push from my job. Last year being given an exceptional award but in not being able to meet their wants and needs because I’m needed elsewhere I am no longer desirable. Join the club. But there are things of life that are just more important. Reminded that in this world, no matter what you do, how hard you work, how kind you are, or how much you try… you are only a someone to those who really love and care about you. My close few not caring that I have nothing much to offer. No big house, no place in the sun, no celebrity friends, or rich family or acquaintances all round the world, no big contacts in high places that open doors, no fancy parties and barby’s with the cool set crowd, no fancy job or lots of money that makes me the kind of friend that is worth having. Just me. A me that truly cares. Only ever disappearing when that care isn’t reciprocated. I’m so grateful for those people who do truly care and still wish to be my friend despite being undesirable. I’m planning on having a “Chocolat” inspired soirée in the forest garden bubble when she is well enough with all those few close individuals who have hung in there for us. Most of them strangers to each other but all very special to me. My connection to them in love.
But most especially I’m grateful for the moments when my daughter looks peaceful. The moments each night when I tuck her up in bed, when she and I are so exhausted from battling, and I stroke her hair just as I did when she was a baby, as she slowly drifts off to sleep. Sometimes the illness not letting her rest but I fight with it more in stroking hair until she falls asleep and is free in her dreams. I just feel so lucky and grateful that she is still in this world. Grateful that she is my daughter. Grateful that she is here and not there. So damn Lucky and Grateful. And so very grateful for her night time peace.
There are many many many moments in every day when this illness feels completely insurmountable. Feeling the constant pressure in helping her to keep raising her weight as the illness tells me “look at me. I’m so fat”. As I look at her and see a fragile and tiny figure who looks so sad against pictures of healthy versions of her looking so happy. This illness really is a monster that destroys a person and their life in every possible way. They call it the loneliest illness. Trapped inside a bully. Taking away so many things that we are told to do when we feel down or stressed or anxious. Trying to find other replacements or distractions as much as possible. But the illness never resting until it gets it’s own way. Until it completely destroys every part of her life. It doesn’t give a shit as long as it is in control. It’s aggression in that is gradually getting less as weight increases but it still comes out at some point during the day. Seeing her hitting her head is heartbreaking as I grab her hands . I’ve had to properly toughen up. Sometimes I have to take a moment to cry on my own. They told me this stage would be brutal. It really is. In hospital they would Medicate and put her in a decompression room until more docile and easier to control. But releasing this rage in a safe place feels hard but necessary. I would not wish for her to be alone and scared in that. We find our way through these difficult moments and then after I hold her tight in cuddling her, stroking her hair and reminding her how much she is loved. They also say that it can destroy your relationship. But I can separate her from the illness. And nothing will ever destroy my feelings of love for her. No matter what the illness throws at me. I think I’ve felt it’s very worst now.
Finding some support in an expert therapist doctor with lots of experience in trauma and eating disorders and the various specialist therapies to deal with that. It was a battle to get her there. I’m hoping it will help. Again I can only try. Researching for a while to find her and luck in her being near to offer face to face. Feeling confident from our conversations in her knowing what she is doing in this with all her psychological experience and knowledge that matched her credentials. Needing to feel that she is in really safe hands. But providing her with autonomy and a safe and confidential place to share what she is going through. There is still such a long way to go but every little step forward matters. This was an enormously brave step for her. I find focussing on those individual steps the best way to deal with this. Not thinking about what others are doing or what the world looks like beyond. Just keeping my eyes on what’s right there in front of me. My thoughts are very small and that helps to keep me up. But I love hearing about the things that are making my closest people happy. That also keeps me up. There is no time or room to be down. And I have so much to feel grateful for. Especially those moments when she feels at peace and we are able to share little moments of beautiful. Little moments that are like snippets of a life we once had. A candle lit each night at dinner that reminds me of my faith in her and us. As I go to bed remembering why I will get up again tomorrow and keep getting up every morning and fighting for her all over again.
Because she is completely worth it. Completely!!! Nothing in life or this world being worth more to me.
She is my Treasure, my Heart, my Love.
And I’m so grateful to be her mum.
“Let the beauty of what you love be what you do” .. Rumi
We fight, even against insurmountable odds, because sometimes we win….Billy Parish
Courage is finding the inner strength and bravery required when confronting danger, difficulty, or opposition. Courage is the energy current behind all great actions and the spark that ignites the initial baby steps of growth. It resides deep within each of us, ready to be accessed in those moments when you need to forge ahead or break through seemingly insurmountable barriers. It is the intangible force that propels you forward on your journey… Cherie Carter-Scott
And whenever you encounter a problem, no matter how insurmountable it might seem, there is one simple response that should be ingrained in your behavior: Never give up…. Stedman Graham
The best way to move a mountain is one stone at a time. Nothing is insurmountable if you take one step before you take the next…. Debbie Shapiro
There is no failure except in no longer trying … Chris Bradford
its not in my nature to go down without a fight even when things seem insurmountable …Suzanne Collins
“About the only value the story of my life may have is to show that one can, even without any particular gifts, overcome obstacles that seem insurmountable if one is willing to face the fact that they must be overcome … Eleanor Roosevelt
For the second week my daughter gained 0.4 kg. That’s 0.8 kg now in total. It doesn’t sound a lot but it means everything when I think back over the past 2 weeks and how much we have had to fight for that. When you have to really “fight” for anything the levels of gratitude increase in a way that “easy” just doesn’t achieve. The more I fight for someone I love, the more tired I get, but the more grateful I become.
When I think about what that last chapter looked and felt like and how hard I found it, it now feels like child’s play in comparison to what this is and what my daughter is going through and what that also looks like for us as parents. There is nothing worse in life in seeing your child unwell. Any anger or bad feeling towards anything or anyone that has hurt me in different ways through the years has just fallen away, faded and disappeared. Just left with a small feeling of disappointment and some sadness. Because none of it matters anymore. I have lived and learnt as they say. Any version of “bitterness” being replaced every day by more and more compassion and care and love. And strength to fight what does matter. So that I can feel the peacefulness of basic existence within a tornado. Allowing any other feeling beyond sadness to just drift away and be replaced by every positive and hopeful and beautiful version in this quest to help my daughter do the same.
Watching a person I love suffer so much and have to really battle every day can’t help but humble me. Completely. Her young strength being such an inspiration to me. It leaves me in awe. I wish I could take it all the pain away from her but instead I have to watch her battle and try to be a soldier in that with her.
Every time one of those very close few give me a little shout out in sending some love or a hello I’m out here, or an image or just a few words of positive thoughts it really helps and is appreciated so deeply by me. Mainly invisible other than those tiny moments of connection. Needing to be ”more” as I build my strength back up each day. Finding it mainly from within but with no human contact beyond home, local shopkeepers, NHS staff and the short walk I took with L in between a meal the other day, those messages provide a boost in just being thought of and cared about. And not alone. Needing it more than they realise in some moments in not having energy or time for absolutely anything else beyond. Other than journaling in order to keep myself together.
14 days ago being told my daughter needed to be hospitalised. Her physical condition being very serious and life threatening. A bed waiting for her 4 days later and a mental health assessment under the mental health act being invoked at her refusal. I can’t even describe what her devastation looked or felt like. A complete melt down of such epic proportions when we got home that I wondered how we would even make it through that night. The previously hopeful but very ill person taken to the darkest of places just like that. Her distress was like nothing I’ve ever seen in her. Like a regressed and scared child.
“Please don’t let them take me away from here. I will be all alone again.”
My despair in that moment was like nothing I had ever felt before as I was left wondering what the hell to do in hearing her for the first time ever in her life saying she no longer wanted to be in this world if they put her there. A thought that had never entered her head before that moment. If this illness does not kill you from starvation it has the ability to take you by suicide. The trauma of that moment leaving her at her lowest ebb. Her weight so low that they felt they had no choice. At the top of their list of critical patients. There is a long list for those beds and a group of experts decided she needed one.My heart dropped to the floor in trying to figure out what to do. Physical against mental health. The pressure in working out what was best. All those previous challenges and sadness paling in comparison.
All night I sat alone with it. Her ambivalence to the seriousness of her condition giving them no alternative. Seeing her changed as a person in that one moment. The trauma of that one statement affecting her so badly that she could not cope. Never had I felt so helpless in being able to help other than holding her in my arms as she shook with shock. To see someone so distraught and scared. And yet somehow in between it I made her have her dinner. Not giving up. I don’t even know how in amongst the chaos and distress and devastation. But just for a moment she sat at the table with us and ate it. Completely numb.But I was left with a feeling that if I was able to still help her to eat in that most distressing of moments then I could do it beyond. Knowing that I had to fight even harder for her. To find everything I had to help her find hers. Everything!And next to me her dad who finally got it too. Completely distraught too but he finally got it.
As I sat on my own in the early hours going back and forth in what was best, all my instincts told me that it was the wrong decision. Despite my huge concerns for her physical wellbeing. Absolutely emaciated.Trying to be completely rational in such an emotional moment. But I know her in a way they don’t. And seen her mental health improve in being home over those couple of weeks. Little by little signing up gradually for what was required. Baby steps in feeling trust and finding strength and courage. Shattered from her battle in getting home. Worn out in what she had put herself through. Not quite ready to battle again. Just needing some real love and care and not feeling alone. My conflict in knowing that environment would feel catastrophic for her at this point. I could picture her response and saw her spiralling downwards. Knowing that she would be completely lost there without any trust or anyone there who loved her and would hold her hand all the way through it. Never letting go until she was ready.Knowing that here I could still see her behind this illness. But what if I’m wrong? Ringing the clinic to talk things through before I made a decision.
As I walked into my room where she had climbed into my bed I told her “I will fight for you to stay here but you have to help me. Whatever it takes. You have to trust me in doing what is best for you.” It was a moment of promise that I hoped I would not live to regret. Putting myself between an illness and those trying to help and putting my neck on the line in doing what I felt was best. But requiring proof. That proof being weight gain. Without it I did not have a leg to stand on.
And so a four day pressurised battle commenced in trying to raise her weight. To provide some proof that she could remain in our care. To keep her where she felt safe while continuing to access their expertise. In readiness of the assessment that would take matters out of our hands. When I call it a battle it is not an exaggeration. This enemy may be invisible but it is so forceful. You would think that the shock would kick her into action. Perhaps on day 1. But then the real battle commenced that was weighted down by the pressure and the despair of everything being taken from her leaving her with no motivation to care. “What’s the point?”. “You are the point” I told her “ because you mean everything to us”.
A continual and relentless patience and kindness and gentleness to quieten an illness whilst standing firmly in my endeavour as the illness tried to manipulate its source. It is a master of manipulation. But I know how it operates now. But at this stage so much worse. But I am prepared for its worst. Allowing a couple of moments of pleasure to remind her in what she was fighting for. A life beyond. If they had seen me allow her to go to a wedding party that she had looked forward to I think they may have had me committed too. But just for a second it provided a moment of normal. Music, laughter, friendship, fireworks. A brief moment to hold on to. A reminder of what life can be. But now having to work much harder for it. Her previously easy life as a child being replaced by a version where those things come at a higher price. The next day being hell. A moment of thinking I had made a mistake. This illness is cunning but I’ve got its number and tough love brought into play. Not a version that comes naturally for me but at this stage is completely required as I became the enemy. The enemy of this illness. So be it. Don’t mess with me. When I’m fighting for someone I love I can scrap it out too. And I have no patience or care for this illness. Show me your worst. I’m seeing it. A different kind of strength required in those moments when she is lost behind an illness that is the ultimate bully. I call her illness Putin. No care for a human life and wreaking chaos and devastation and distress in the pursuit of power and control.
I said a prayer one morning in that first week. In desperate moments we turn to a higher being in looking for strength. My Gran always had that faith. I think I lost mine somewhere along the way despite being the little girl at school who used to put their hand up when they asked who wanted to be a nun when they grew up. What did I know other than I just wanted to be a good girl. Because I was just very loving and I liked the fact that Jesus was so kind and always helped others. I liked the stories like The Good Samaritan or Feeding the 5000. I liked the candles flickering in church. I liked the feeling that I was not alone. That there was someone who was watching over me and having a guardian angel who kept me safe. That those I loved and lost went to a better place and were watching over me from heaven. It turns out I wasn’t really made of the stuff required in being a nun. Not selfless and pure to be a symbol of virtue. I think I liked fun, boys adventures and dancing too much. Not really made for the life of duty in a man made church that can often seem as corrupt and judgemental as the rest of it. All that money held in those places could feed the entire world and yet it is kept in vaults of gold. But the simple element of what any religion is, Is the Love part. “Love thy neighbour”. The bit where everyone matters. Rich or poor. No matter who you are or where you come from. In Gods eyes they told me, everyone has value. Yes I can sign up to that. That’s the part of my religious upbringing that I have taken along the road with me. That’s the bit I can relate and attach to. Feeling the human and spiritual element as opposed to all the rules or ceremony. “Let he without sin cast the first stone”. Struggled a lot in that in that last chapter and from early life. But I try to remember that in moments I feel angry. Who or what can I lash out at in my anger in this illness, knowing that I have made many mistakes and got things wrong and am just as flawed a human as the next. Feels good just to know that. Never pretended to be perfect. But I do try to do what feels “right” to me. I really try. And yet this morning I turned to a higher being for a moment as I started to cry and ask for help. Just sitting on my settee. To ask for strength. Calling out to the unknown to ask for something more . I feel my strength inside but in those difficult moments it dips. Because this illness is completely relentless. And I see and feel her pain all day every day and try to take that away from her. Looking for more strength so that I am ready and prepared and able.
Because I always wanted to be a mum. Always!It was the happiest moment of my whole life when she arrived in this world. And I absolutely accept and hold with complete commitment my duty and also my gift of love and care for her. And that care is as hard as it can possibly be right now. Pushing me to the very Limits in what love and care look like including the tough version. Trying to help someone who is so consumed by an illness that they don’t want to be helped. And taking the hits literally in that, when rationality is completely lost and this illness employs every element of its darkness to bully. Like a leech on a beautiful person and sucking the life out of her. “Leave her alone” I scream out inside me. My hatred of this illness motivating me even more as it creates a living hell. But our faith In her is stronger. So much stronger than it could ever be. And it is our faith in her that keeps us going. In the moments that this illness comes flying at me with such full rage as I push back at it in helping her to eat, which sometimes requires her dad to restrain her from hurting me or herself. But I still see her. I still feel my love for her. It can fight with that but it won’t win. My love for her is far too strong. Or when biscuits are thrown across the room as I quietly pick them up before she reappears and picks up a dustpan and brush to help, or she smashes up pictures of her grandad in such anger which then subsides and turns into distress and shared tears with her dad. Finally able to share in the grief that has been bottled up inside and has hurt them both in ways that they have struggled to express openly. But seeing their complete and utter distress as they are able to cry together in what has been taken from them in such a horrible way. Loss and Grief is such a lonely place. But in those moments it is shared with someone who feels it in the same way and it provides a warmth that can’t be found anywhere else beyond. Not in the same way. Will that help? I wonder. Please let it help in a journey that requires letting go of that grief. That bottled up grief shown in rage that has hurt them both and is being felt like a tidal wave together. Like being back in that moment a year ago when it was missed. When it was all held and pushed down inside. Hoping that in being able to go through this process together that it will unlock the shackles that tie her to the comfort of something that only wishes to hurt her.
But it is so strong. It will not let go without a fight. Like a darkness that invades and consumes her and holds her like a prisoner as she talks of feeling trapped. Feeling like I need an army to fight it. But instead each morning I wake up to do battle until I reach the end of the day completely exhausted. Sleep being my favourite part of each day. A small measure of peace. This route being so hard and fraught with dangers. But hospital is the last resort. They know how hard this is but we have to try. Because getting through this together feels so important in what she is feeling. Leaving her alone somewhere would be repeating history. She needs to see and feel us fighting for her in the way she does for others. To not feel abandoned in her moment of need. To feel our strength in reclaiming that feeling of safety and comfort in a way that she experienced as a child. To not run from what is difficult. Both of us standing solidly ready to do battle with this illness each day in whatever it throws at us and whatever it takes. In moments it feels completely in charge and I doubt myself, until all of a sudden a small victory appears and it feels like a sign to keep pushing forward.
I’ve never been a person with huge self belief. But I do believe in some things very deeply. Those values that I hold so close and dear. They seem old fashioned to many, but not to me. And in more recent times have made my life so hard. But what is the point of having them if they are just thrown away when the going gets tough. They have certainly been shaken. I’m not a person who has been very vocal in life in disagreeing. Generally keeping it to myself. My blog an anonymous place to share what I care about and sometimes vent what makes me angry or sad. It often feels pointless in vocalising it. In disagreeing with the many or those with power and influence. It can just lead to conflict that I don’t like or leaving me feeling like less when others retaliate and flex their muscles or raise their voices. And in this world the majority always rules. If everyone is singing from the same sheet and you disagree, well who will believe you or stand in your corner, unless you flex your muscles or raise your voice. But then I would just end up becoming part of the majority. It’s not my way. I don’t wish to have power over others. But I guess some of that anger and frustration has to be put somewhere and in moments I put mine here. I suppose everyone has different versions of letting their shadow loose. Like horror films which some people really love. But I don’t like them. They just scare me and I don’t get any joy from watching others murder or torture people even if it is just pretend. I’ve never really got that. More a Human story, romcom, superhero, adventure or fantasy girl. But amongst the shadows It’s amazing what you also find in yourself when it really matters. Especially in this moment. I’m having to dig deep for anything and everything that feels helpful.
Like that day just over a week ago now when faced with medical experts who were all singing from the same hymn sheet, I did very vocally put my point across. Completely trusting in their expertise when it comes to the physical health of my daughter. Absolutely and completely. I’m all ears and learning and trying. Really trying. And knowing that the specialists in hospital know what they are doing in relation to this illness. But in a rare moment of critical importance I stood up to be counted in what I know. In knowing who I am as a person, who I am as a mum, who P is as a person, who P is as a dad and who my daughter is behind this illness and all the barriers and the protection that is currently in place when she is around those experts. In knowing what feels important to her, what are her triggers, what works and what doesn’t, what she needs and what she wants. What will help and what will hinder. And what will feel damaging for her in relation to her mental health. Because I know a lot of what sits inside of her quiet and vulnerable exterior. The things she shares. Her hopes, her fears, her struggles and her joys. But most of all what this bubble provides and always did provide as she was growing up that can’t be replicated in an institution, alongside what can be replicated outside of the institution and brought into this bubble. And despite the conflicts that come with any difficult decisions of this magnitude I trusted in my gut. I believed in it. My instincts as a mum and in all the information I have taken in over the past six years both in theoretical learning but more so in all those different experiences. Some related, some not but relevant. And also what I’ve learnt through a lifetime of being with her and what this has looked like over the past year. With an understanding of what is not said, what is not shared, what is not expressed. Our connection has never felt so important as it is right now. That trust showing its value in a way I wish it didn’t have to but makes me so grateful and proud that we have it. I wonder how others cope if they don’t have that same line of communication beyond the illness. If prior to that they were also in conflict. It’s the snippets of her that I keep hold of as we tread water, as she reaches out to me too. Thank God for that. And knowing that in all those really difficult, scary and heart breaking moments that the different version appears, that it is an illness that morphes into a visible version that shows itself when its control is threatened. Not wishing that power to be taken away. Because it is the love and calmness that helps her to climb back over it and allows her to resurface again. But that trust also brings its own pressure. The pressure to deliver on that trust never feeling so heavy or full of responsibility as when I walked into that room.As she looked at me with scared eyes of a child who needed me to be “more”. Never had I felt so prepared to stand up and be counted, or so confident and articulate in putting my most rational and thought out, points of view forward, or so assertively challenging someone who on paper is so much more knowledgeable and expert than me. Who did I think I was?! I was a mum who loves her daughter more than life itself. And in that role, nothing stops me from fighting for her. In hearing what she tells me she needs and what I believe to be right for her. This wasn’t about ego. This was about trying to do the right thing by her. To stand in her corner, to stand up for her in a moment when she couldn’t for herself until suddenly she did. As she found her voice and articulated how she feels and what helps her. What she needs. What is working and what makes it harder. Feeling like she was fighting two battles. One with the illness and one with those trying to help. I couldn’t have felt prouder of her in that moment in revealing who she is behind the illness. I saw the doctors surprise and change in assumption that led to a change of plan as the bed was cancelled. Getting the best version for both her physical and mental wellbeing in a holistic approach was the aim. Knowing that both need to be tackled but in putting one first it completely jeopardised the other. Oh the continual conflict in trying to work out what is best for her. This being a decision that is challenged by mself every single day. This isn’t about being right or knowing best. It is about trying to get the best version for her. Not just right now but also long term. For her life right now and beyond. Not accepting the package deal but wanting the bespoke option and asking for it. I promised that I would fight for her and I did. And then so did she. Pick your battles they say. We picked a moment when it really mattered. When the odds were stacked against us and somehow we needed our voices to be heard. Despite knowing that we were the David’s. Goliath being so much stronger and more powerful than us. Or so it seemed. But sometimes strength and courage shows itself in strange ways. Putting yourself on the line knowing that you have to deliver on it. Failure not being an option. Whatever it takes. Come what may. As we walked out of that room in having a concrete decision overturned because of thoughts shared and the results of a weeks complete and utter hard work and effort and battle scars, we were able to secure a version that my daughter felt more safe and comfortable in. Where she could begin to sign up for what needs to be done. But of course the illness hasn’t vanished. It wishes us to fail. and it tries its hardest in that every single day. But for a brief moment I felt like I was able to protect her from a version that was feeling like another trauma in the making and in that I believe had the absolute potential to damage her longer term. And she was able to be seen beyond the monster of an illness that everyone is seeing and is talking about. They saw and heard her. They saw that there was more that they previously could not see. I believed in her and now they are trying to. I heard the Doctor congratulate her on expressing herself. That very thing showing that she is not completely lost behind this illness but battling in her own quiet way and sharing what those battles look like. And how she requires time and belief that she can overcome them without being put in a place where she will be forced or pressured and left feeling alone again. That this version is slower but possible. That she has the people around her that have the influence and the strength she needs to fight harder for herself. I knowing how hard this battle will be and I’m feeling it every day but if we are all in it fully that the love that is shared will pull us through. I believe and have faith in it. It sounds so woolly to many when I say how powerful love is. But I believe in it. Truly believe in it. Because I see the difference it is making. Much slower, much harder and oh so very painful, but it is happening. But will it be enough? I don’t know. We can only try, try and try harder. When I’m in it I’m completely in it. No half measures with me. I’m scared but I hide it behind gentle strength.
To see her complete relief as we drove home and then later feel all the last seven days of held anger through her tears was something I won’t forget. In the same way as the desperate distress of the week before. She is tired. Worn out. But I realised how strong she is. Something she can’t see but I know what it took for her to keep going, what it took for her to get to here and what she has lost over the past week that has felt devastating. Watching her life disintegrate in a second. On a whole other level to my version previously. Commenting on the journey there in feeling like she was going to a funeral or her trial. Feeling like it was the end for her. Her feelings of complete hopelessness that hadn’t existed until that Thursday. What a distressing thing to feel in her. In a single moment her mental health plummeted as she felt ambushed. I felt it too. It wasn’t their intention. Just doing their job In trying to keep her safe and help her. How could they know. They aren’t mind readers. it’s impact making the job more difficult but it also provided the reason to fight harder. Like a doubled edged sword. Feeling my own relief in being able to stop something that didn’t feel right.
Perhaps if I had never experienced the past six years I wouldn’t have known. Perhaps I would have just gone along with what I was told without questioning or challenging it. But this new version of me who has battled, threw away that armour and went in as me. A me that feels that “Together” we can be that more. A more in the safety of this bubble with all the extra support surrounding us. We can’t do it on our own. Absolutely we can’t. Looking for that help wherever I can find it. There are some amazingly kind and knowledgable people out there. But the value of love, safety, calm, patience, understanding, learning, evolving, trust and complete dedication showed themselves in their most powerful form in that moment. Standing up for what felt right in that moment, despite all my reservations and conflicts. Hoping it was the right decision. Looking for strength and faith in it being the right one. Will we succeed beyond? I have to believe that we will. I have faith that we will. I have to have faith in us and the people who are continuing to support us. It’s a long journey to better. In this decision I don’t know for sure. I will be the first to put my hands up if not and follow their version. But feeling that the risk in this version is so much less in damaging her long term than the other. Needing more time to prove our versions worth. Needing more time to get those extra supports in place. More time for her to feel the effects of being loved and safe and not alone in it. More time to cement the food plan. Just more time. I can take the hits. All of them. Tiny and feeble battle scars from an illness that doesn’t like us because we are being stronger and wishing to get her to better places and because I know that she loves us more and she knows that she is loved beyond measure. We can provide more comfort than this illness ever could. Until she realises her own courage, her own strength, her own qualities that have kept her going and are fighting back. Until she is able to see all the amazing things that she is made of and feels their incredible worth. It’s not the stuff for the faint hearted. It’s not the insipid version that we cling to. It is standing up in the crowd and saying “I’m made of more. My kind of more”. And the path to that is never going to be easy. But she is on it and we are walking either side. Like three musketeers. All for one and one for all. With a team of experts supporting us.
One week later behind the calm I was continuing to work fast and furiously in taking care of all practicalities. Like a proper little housewife and SOME!. The illness fighting even more brutally for control because of weight gain but I feeling just as relentless. Completely exhausted every night as sleep prepares me for the onslaught of a new day. But those small victories also providing more strength and motivation to get her to a place where she can rest for a moment. Her exhaustion in battling making me battle even harder. We are not through the worst yet. It will only get harder. Until a day will come when she starts to hear her own voice more fully again. That internal battle so evident right now as she screams out in pain and anguish. But every meal will quieten its grip.
As my daughter took a slow and gentle walk to the forest with her dad I felt the therapeutic importance in her just being able to have that very simple freedom. A place where in the past we have played and laughed, but over the past two weeks we have picked flowers for the dinner table, a place where we have sat to eat a snack to make it a little less painful and forced, a place where she has gone to sit to find her calm in those moments before having to fight harder, or we have sat quietly together holding hands as I tell her “everything will be ok. You are not alone”. As she came back smiling from their walk I knew it wouldn’t last long with Dinner approaching and preparing for the inevitable battle in what that looks like but knowing that smile would come again, even if in little moments in between. Or just some peace in snuggles while watching a film, or tired moments stroking hair. And reminders of a life to come in the chats in the forest and garden of what has been shared in the past and all the hopeful things to come. They can be limitless. But for now it is one meal at a time, one moment at a time, one day at a time as we keep working hard and battling and trying. Having faith that one day, the time comes that she will be well again and we are able to take our own individual paths in life in what we love. Paths that the other musketeers will encourage and be proud of. Paths that are shared and celebrated together. I believe in it and I believe in us. Never believed in anything more. And in the moments I falter I look for strength anywhere I can find it and remind myself of my own strength in trying to do what needs to be done in a place that feels safe .
A place that required me to stand up and say “There’s no place like home.”
There is a place. Invisible to the outside world. Revealed just for a moment. Tucked away behind a beautiful, lush and green forest where magic carries through the trees and in the breeze straight to our bubble. This bubble being a place where the most beautiful and kind and loving young ladybird of so much substance and courage, lives.
But right now a ladybird who is extremely ill. Life threateningly. The Doctor trying not to scare her or us but reminding us of the seriousness of her current condition. If her weight drops again by next Thursday she will be hospitalised. Her body can no longer take any more. She will just collapse. Three weeks ago I waited every day for that call that every parent dreads as I had to watch her playing Russian roulette with herself every day in not eating but dancing all day. The pressure on her heart at this point is immense. Every day from far away encouraging her to eat something as her body went into starvation mode in wishing to binge and restrict. Binge and restrict. One evening talking her back to her home by phone as she sat alone in the park with wrappers of chocolate and biscuits and cakes around her, and being unable to get up and walk home. Her body reacting to being overloaded. Hiding my panic in her being like that alone in the dark on her own and providing soft and gentle and calming words as I felt the relief in her opening her front door. The longest and most agonising week as I cried myself to sleep each night. Wanting to just get her but having to respect her wishes. As I counted down the days for her to come home knowing that the NHS team were waiting patiently and ready for her. Their patience from not wanting her to walk away from treatment completely which was still a massive possibility. Our patience paying of in getting her there and putting her straight into the intensive care treatment programme. The relief for me in not having to carry all of the responsibility of what is so serious all by myself. They could feel my complete relief as I cried. The nicest kindest people ever. I’m so grateful for them.They also hidden away in a small underfunded place without mod cons. But they make up for completely in who they are and what they do and how.
Re-eating syndrome is as dangerous as starving yourself. It’s why when they found the captives of those Nazi concentration camps they had to be careful in how they brought them back to a healthy place. People look at someone like my girl and assume that she is making a choice. No one would choose this. Or being selfish, attention seeking, vain. There are starving people out there in the world and you can have what you want. How stupid are you. I’ve seen the mean images, the things that people write that ridicule and laugh at people like my daughter. Making them feel even less. So that what? They can feel like more. What a sad and horrible way to feel like more. If the same was done to cancer patients there would be outrage. Because the physical consequences of this are very similar. I know because I have taken care of both now. Both versions being equally awful but in different ways. This version feeling so much harder for me to support because it’s my child and so very complicated to treat. The unkindness of others that is made from ignorance and creates the stigma just says so much more about who those people are than people like my daughter. In fact when I think how truly kind and caring and sensitive she has been ever since she was a little girl I realise that her beautiful qualities will always make her more vulnerable but also make her so much more. Others seeing them as weaknesses. A person that you can walk over. But she still loves and cares about others even when she is struggling. It tells me everything about what sits at her core and how amazingly beautiful that is. And if anyone tries to walk over her, well you’ll have to come through me first. As my strength has risen from the very depths of who I am. A force field that is so strong that it comes from only one place. True and Pure Love. Do your worst. It just disintegrates on contact. Because from the moment she arrived in this world she has had the kind of qualities that elevate her to a place of such deep inner beauty that others can only imagine. She is the person who made me “more”. She is the person who inspires me to be “more”. More and better for her, especially right now. Because in all her love and care, she deserves the best version of that too. As I try my very hardest to be all that she needs. And in all her humility she calls me “her rock”. She is “my treasure”. Finding my own version of real and complete humility in this. There is nothing I would not do for her. I’d give my life if I could. The world beyond vanishing as I concentrate fully on her. Because right now she is the beautiful person trapped inside an illness that is like a monster that wants to annihilate her. An illness that was triggered by painful events and because she loves and cares so very much has now become like a trauma bond for her. It is a horrible illness that initially provided some control at the beginning of the pandemic and then became the comfort in losing her grandad through a very slow and painful death. Someone who was a significant person in her life. Someone she loved and cared about so much. He would hate to see this happening to her. A beautiful and happy bubble of childhood, burst through so much loss and difficulty. It was her way of coping. But where some might comfort eat some icecream during a difficult time or others lose a bit of weight during a stressful time, this version goes beyond that. Because it is already in her. Genes that make her more susceptible to respond in that way. Having the ability to take complete control of her. It is a mental illness. And despite how often I hear about how caring we are now in those who have mental health illnesses there is also this ignorance too in people who made it through the pandemic unscathed and think “well I had to go through that too and I’m ok. Why can’t you do the same. Why are you so weak? She is not weak. Not by any stretch. As I watch her battle every day like a tiny warrior. The pain so very visible on her face as I often stroke it away as she lays her head on me. Knowing inside her there is a major battle being fought all alone. You are not alone I remind her.
We are all made differently and highly sensitive people take in so much and really feel it, along with peoples circumstances being very different. We don’t know what other people have or are going through in their lives. This life can be tough and harsh at the best of times. Humans can be pretty selfish and mean to each other. But if you are going through any difficulties, losses, challenges or traumas it can very easily have an effect on you mentally. Just like falling over and cutting your knee. Left unnoticed and without antiseptic it can soon become completely infected leaving you lying in hospital with sepsis. It’s just harder to see it when it sits inside. And what we can’t see or understand we fear. Because if it happened to them perhaps it could happen to me. I certainly know how much that chapter affected my mental health in having to deal with so many big life changing difficulties that individually would be classed as traumas. And only a few really understood what was happening for me even in when I was sitting in a room each week full of people training to be counsellors. Some of which were also unkind.
I’ve seen a lot as I’ve watched the news in who and how and where kindness is given more freely and where it isn’t in the same way. Any kindness being a wonderful thing especially with so much suffering in this world. Who couldn’t be disgusted by the completely devastation that is happening to normal people in their normal lives. But I see the difference in how we respond. Always being the “good guys” whilst forgetting our very own war criminal in Tony Blair. Did the lives of those people and their children have less value because they were not like us. Just like the differences in how we are responding to refuges or the sickening version of our policy to ship those people off to Rwanda. I still see it even in this bubble and even if I don’t have anything to give to others battles beyond, right now I still care. Sending it out into the universe. The “R” word featuring very heavily in what I’m seeing. Despite all our surface chat of equality and inclusivity. This feels as institutional as it comes. I guess for me in mentioning it, it is something beyond my own sadness to place the anger. No room for anger in this bubble but I am certainly feeling the sadness. Getting to know the pain very well. Sadness in what is happening for my girl and sadness in a world made of greed and power and money and never run by anyone that you could ever trust as far as you could throw them. They can’t even follow their own rules. And little people’s lives having no value. No wonder I find myself creating protection in a forest garden bubble despite knowing that entitled people could just come along at any moment and destroy it. Just because they can. But finding my faith in humanity in the little people in seeing and feeling all the love and kindness and bravery of others. The rest just feels meaningless and empty. The pursuit of happiness against my pursuit for peace and love.
Peace and love existing in the forest garden where she often sits wrapped up with a hot water bottle trying to keep warm. Her body being so thin that she is very high risk of everything and anything going wrong. From brittle bones, to failure of every vital organ including her heart which is monitored. Two weeks ago we had nothing. No support at all. A very sick daughter who wouldn’t accept any help. Three months spent gently and patiently trying to cajole her to reach out for help. Her age meaning that it can’t be enforced. A visit to A&E being the turning point as she saw their shock. But still not enough to really make her see the seriousness despite having tests all day and then wanting to keep her in. She refused. But it was enough to finally put that hand out as I sat on her bed with her as she made that desperately needed call. Getting cut off halfway through. My desperation inside being calmness beyond as I encouraged her to press send again as she looked to walk away. This time success. Helping her to complete the formalities in order to be assessed. At which point she jumped straight to the top of the list in her condition now being so high risk. And then followed by the subsequent quiet battle in negotiation as she refused to start until she completed and came home at Easter. As I at home was sick with worry and regularly talking with the clinic in how we could get her there without scaring her away. Her previous experience privately being a complete disaster in the end. In its uncaring and military way that provided very little care beyond being weighed, berated by the psychiatrist for not following the brutal plan, and an online therapist she could not relate to. She was completely lost in it and had no trust in anyone there. Control and command tactics that left her wanting to find her own control even more. Pushing her further down the rabbit hole. Losing her own identity behind an illness. Not seen as real person just another anorexic. Proof to me in that moment that money doesn’t always mean the best. It makes me angry in just how poor that version was. Regaining some weight for a moment, all of which was done at home, but not addressing the illness in any real way or enabling us to support her more fully. Just floundering in a world that is more complicated that just eating. Money for old rope that will see patients back time and time again. It just left her without any trust in anything or anyone beyond those that love her. And doing the necessary just to escape from it and continue with her course. My hidden desperation feeling off the scale in seeing her deteriorate again. But this illness is also very resistant to being helped so being supported in the right way is the most important thing. And being seen as a person beyond the illness is the most important part. Because that is the person who is trapped inside this monster. Pulling her back out and helping her to quieten the dangerous voice in what is powerful and influential. To send it back into the deepest and darkest recesses of her mind. Because that is where it belongs. It has no value. It is just a shadow that wants to control her. But she is the light. A beautiful a shining version. I’ve learnt a lot in a year. Reading about it is one thing. Living it is another. You can’t fight darkness with darkness. You fight it with Love. The most powerful weapon. Along with all those other sensitive qualities that are seen as weak but when up against darkness are more kick ass. Pulling her away from the comfort of something that wishes to destroy her to the comfort of life, family and friends that wish her to be happy and healthy and be whoever she wishes to be. Where she is enough. People that love and care about her. Anything less isn’t good enough for her. Anyone that has the ability to leave her feeling less or in fact has left me feeling the same has been removed. We don’t need that. We deserve better. Because we are “more”. It’s just others more looks different to ours. Let them revel in their own greatness. In the end as Batman once said “It’s not who we underneath it’s what we do that defines us” And that doing is happening very quietly and invisibly and undercover. This is the real and deep version of love and care where you care so much that you would do absolutely anything. Not needing admiration. Not feeling resentful. Just doing. Motivated and inspired by her. Because when you really love, then people really matter. It’s not just about “me”. I think I got confused in all that talk of self love and knowing your worth. Because people always matter to me and I’ve felt that in every version of true care ever given. Often laughed at, or taken for granted or just thrown away. But I know what is given. Because I feel it.
As she sits in the garden her tiny hands are always so blue where her blood struggles to circulate to them through those thinly fragile and weak arms that remind her of the person she cherished so very dearly. She always feels cold. But those cold hands always signifying the warmest and purest of hearts. And here in the forest garden being newly created in a safe and protected bubble, there is the provision of calmness and peacefulness of mind and body on days where the sun shines in. Captured and held in all its powerful force in this sun trap where it’s heat is able to intensify. Where layers can be removed without fear of coldness or judgements of others. A comfort that is continuously given in every moment of every day in order to help break this trauma. As she sits there often feeling so alone. Can you imagine that?! A kind a loving young ladybird who is so ill having to feel so alone in that. For risk of being ridiculed and laughed at. For fear of her illness and the vulnerability of it being used against her by the unkindness of others. In a time when she really needs the love and care of others even more. The heart break of seeing a ladybird who was once so full of life. A crowd that vanishes. Just those true friends that don’t know, dont ask, but miss her and check that she is ok. Those friends feeling like real favs of mine. Especially one who she trusted enough to finally confide in and who is being like a sister to her. Very similar in their ways of being.
No artificiality allowed in this bubble. A forest garden it shall be in all its colours and filled with fairies and lights. And at some point her favourite, a cherry blossom tree, and lots of colour from beautiful flowers and cushions. The unmanicured lawn remaining as opposed to replacing it with a synthetic version as is often preferred now. Less work I hear. But how will the daisy’s and dandelions grow and wither and grow again without an earthiness beneath. Preferring the imperfect but beautiful version in all its flaws. This version feeling a mixture of fantasy and very real. What is this life without both. But perfection not something that is required by me. I only need the Ladybird to be well and her again. Everything being renovated and mended and brought back to life with lots of effort without lots of new. Just a tired patio that has aged with time and tiny and playful footsteps. Awaiting a new platform in time to come that will be in keeping with this natural feel. The kindness of P’s cousin who wishes to lay it in order to help make this bubble a more lovely safe haven. Feeling the love of these few who really care about us.
The backdrop of the newly rejuvenated deep autumnal red fence that has been work in progress since last year and I finally finished in the week. The day after the anniversary. It provides the barrier between calmness and the world beyond. A colour that is seen so vividly and without flaw in this bubble. A reminder in its deep and very visible colour that love is completely present here. A natural love that is so in keeping with the most beautiful and natural elements of the world that lies beyond. A colour that is loved so much by this young ladybird. Knowing that if it starts to fade it can always be replenished. There is always extra on standby that doesn’t need to be found outside. A supply that is always to be found just by looking inside. Red is always a colour that is found within but for me is made to be given out. That same red seen on the walls of the small child’s house with it led freshly painted white door with a small heart opening. And above it the pure white of a permanently snow covered rooftop and windows. A house filled with so many different and beautiful colours of only partially used pots of paints that will be reopened when the time is right. Alongside childhood memories of games and other things of many purposes. Some of which have been forgotten. Outside a little buzzing bee and ladybird stand side by side. Yellow and black against Red and Black. Stripes and Spots. And yet in all their differences they are a perfect match. The bees purpose in buzzing around busily for the hive whilst the universally beloved, harmless and graceful ladybird rests. The bee only stinging others when necessary in protecting. But it is always the bee that dies from that sting. The ladybird also being a protector and a survivor. How colourless this world would be without this ladybird. This forest garden bubble would lose its magic without her beauty. I need her to survive. She has to survive. This busy bee dropping every other task beyond. Work, People, Life. Her only purpose right now in doing whatever it takes to help keep her in the world. Not wishing to take a single risk in knowing how very fragile she is. But sometimes having to watch and wait in moments as the ladybird risks it all. Those moments feeling unbearable. How the bee has and is worrying. Both having the ability to fly with delicate wings but right now just swaying together in the gentle breeze. Perhaps they fly when no one is looking in their dreams.
And at the far end only slightly visible where the bubble ends a beautiful autumnal gold fence. The gateway to the world beyond. An invisible gate right now. Its openness to all, being heavily restricted by an increased force field in access to just the very few. A more visible version to come at a later date in creating those boundaries. Again it will be the deep red colour of the backdrop. Always opening outwards to others who really care and anyone in need of help. But a little more discerning in who can come in. I have been reminded in how easily bubbles can be burst. A garden looking and feeling imperfect but magical. Because magical isn’t supposed to be perfect. It is all the imperfections that make it feel more natural. That’s where the sparkle lives. This busy bee finally having and really feeling the support of the intensive care treatment team that is now helping to keep this ladybird in the world too and teaching us in how to deliver the same treatment in this forest garden bubble. Such very early days. Only two weeks in but everything being thrown at her such is the seriousness of her condition now. We are very lucky and very grateful. Unfortunately until you reach such a point it is very difficult to get such help. The private version not even coming close to what these most genuine of carers are giving. She’s not seen as just another ladybird. They see and hear all the variations in her spots. And that is what is creating her trust in them. That and a relatability in coffee shop style. Treading carefully and slowly but with an awareness that progress is rapidly required. And many a wounded healer to be found amongst them. You can hear and feel their wisdom and care in knowing exactly what it looks and feels like beyond all the theory. Yes it does look very different doesn’t it. No overnight quick fix. This will take time. Priority right now. Just keeping her in it. And then one stepping stone at a time.
This bubble a place where the quality of strength looks very different to the “more” that is seen as strength in the world beyond. Quiet, gentleness, patience, calmness, understanding, time care, Love being all the things that feel like “more” and make the difference. All the things that always existed in that bubble before. All the things that were always there but for a brief moment were left feeling like they were “less”. How little now I take in others judgements or comparisons of my garden with theirs. Just because theirs is bigger, things grow more quickly, with more expensive and new stuff that looks so sparkly. But it’s not how it looks that counts. Its the intention that sits behind its purpose and the feeling it creates. People will always be the best and most important ingredients of my garden surrounded by all the other natural things. The sky the clouds the tree the flowers. The other stuff is just the sparkle on top. I can live without that stuff. The crowd can’t be seen from here. And feeling “less” is not an option. Just those few who care and look in unobtrusively and offer their hands. Less is often so much more I have found. Self sufficient my whole life and surviving so much. Living on my own from when I was 16 years old and having to pay for it. I was just a scared kid really but I managed. Never needing a life jacket but it sure is nice when someone puts our a genuinely caring hand … but because they want to not because they want to be like or admired. Because they genuinely care. Otherwise it means very little.
i am giving both of my hands to her in constant care and attention. Even though in little moments she hides her illness behind layers in trying to find normality and purpose. Leaving me holding my breath till she returns. It is still hard for her to accept just how poorly she is and often if feels like a game of chess. Only it isn’t a game and the risks are so high right now. I am very aware of that but also have finally accepted what this is and what that means for me too. Being her full time carer because she needs it and because I love her and want to. I can’t quite explain exactly what that looks in this version but like being a full time mum and taking care of all the basics in every way. As though she were young again. Being on demand in providing the constant safety and comfort until she feels able to give it to herself in a healthier way. Like going through the journey to independence again. Little by little. on step at a time. It obviously feels hard in some moments. Trying to maintain all the best qualities and getting tired and feeling the frustration in moments. And then seeing P find a job that is everything he loves. I have to remind myself in who I am. Because I don’t want to resent others. I don’t resent it. I’m actually really happy for him. He’s been through a lot and deserves something good. But in the odd tired moment I am reminded of a life I once built and was lost. But then remembering that I only really wanted to help others and in that meet my own potential. Maybe that is what I’m doing right now. It feels like “more” to me and her. Especially when the thought of her being hospitalised feels completely scary in knowing the effect that would have on her mental health. Needing to be able to do what they would do because her body can take no more. Like any mum I am willing to sacrifice my life for hers in a heartbeat. I can’t physically but I can in giving every part of me, my time and my effort to her. Of course it can feel so lonely in lots of moments. But I do also know how to be alone and ok in it. Using all the good stuff that I had started giving out to others again, for her again instead. She needs it the most and has it for as long as she needs it. I hope for her, that at some point she doesn’t. This isn’t the sort of life that a person like her deserves. Starting from scratch in helping her to reclaim all the parts of herself that she has lost so she can one day live some dreams again. And always holding a feeling that perhaps a moment might come again for me at some point. I believe it will. I have faith in both of us.
And that is being helped in the faith of those who love us and buoy up my faith, those newly founds NHS specials who are supporting us with much care and kindness, and all those that show their care in trusting in my ability to hold both of her hands while we tread water together. The majority of care sitting with me every day but P trying harder to help now and learning more and just being protective of her. And also of me even if often it feels like I have another kid to look after. He is seeing more in how tiring and intensive it. I realise why I like being a kid so much. Because when it comes to the practicality’s of family, I’ve always been the grown up.But in the end it wouldn’t matter what I did or how much I had of my own. Because without her there is no world for me. Because there is no “more” than her. And it is her “more that” I have faith in. That and Love.
So we disappear again into the invisible forest garden bubble, where the work required continues ……