“The real measure of your wealth is how much you’d be worth if you lost all your money.” ~Unknown [not just money - but everything - EVERYthing.]
During the course of my ED, a lot of things I once had taken for granted were lost. Looking back, I can see how it stripped me of what made me myself – at first subtly, and then, ever faster as I spiralled out of control. Every thing I lost, was also another foot of rope I lost in the tug of war against ED taking full control of me.
One of the first things to go was my cognitive ability. I still struggle with this, but I have enough of it back to enjoy sudoku, to write blogs, and to generally cope day to day. Comparing myself now to how bright I used to be though, really hurts. My TL;DR rant today has been inspired by just another of my ‘brain drains’ – when I completely forget what I was saying, or doing, or what I was reading, etc. It’s an everyday thing for me now, and it’s frustrating.
I first started seeing the effects of starvation on my brain when I was in year 10 at school – so aged about 13 – 14. I’d come from a brilliant year 9 with top marks in everything, being a part of the gifted and talented club that our school created so as to enter us in all the competitions – which was the best experience. I loved the maths and engineering ones especially – so much fun. I’d become passionate about maths and science and also was a voracious bookworm, reading three smaller or two adult-sized novels a day as well as doing extra schoolwork when I could. I was also the happiest I’ve ever been during my school years – I had some really lovely friends and the kids at the school I was then at were accepting, kind, and friendly, despite many of them being rougher kids from tough backgrounds. School was a refuge from home.
Halfway into year 10, things started to lag a bit. Looking back, I see myself gradually withdrawing from people around me. My friends did their best to keep drawing me back out again – which I’m so grateful for – but I was withdrawing into my own self as well, and you can’t physically hunt for someone and pull them back out of themselves. To their credit, they never gave up and I was never alone even in the times I retreated to help the library cover stacks of books or other work rather than hang out with them. They simply drew up chairs and started covering books too.
At first I withdrew into my beloved books, too. Blocked the real world out. But slowly, books made less and less sense too. I had to go back and start again so many times because I’d realise I’d read a few chapters but had no idea what the book was even about. It was like it had literally been seen by my eyes, then marched out of my earholes without having actually passed through my brain.
School work became a lot harder. Of course, year 10 work IS harder – preparing us for advanced maths and science options in year 11, when our senior years began back then. And I needed to know it, because I planned on taking all the science and maths options that I could. But the easiest simplest things started not making much sense to me.
Year 11 algebra was pretty much beyond me, because I didn’t manage to comprehend year 10 trigonometry, so I didn’t have the basics. I got my good marks still, and got B’s average in most year 11 subjects with some A’s, but nothing was retained, by this stage I was simply parroting the information without understanding it very well.
One of my most frightening moments, the moment I look back on and see that academically and cognitively, I lost it, was the first maths 1 class in year 11. Our teacher required us to start the class by drawing a circle on our pages. Just a simple circle, nothing fancy. I sat there, blank. I could not get my head around a circle. She drew one on the board, and I still couldn’t get my head around a circle. Something so simple, and it just did not compute at all. That day, with the maths teacher frustrated at me and me frustrated at myself, shattered my confidence and it was all downhill from there.
I was dancing full time, but the school also required us to keep up with the ‘usual’ year 11 and 12 studies in about half the time, so we went to a local high school and had our own small classes that went long past normal school hours. I had also opted to take Physics by correspondence, because I am crazy. In those days, we rarely used computers, instead sending booklets and worksheets back and forth by mail. The stress of studying in such little time, of trying to get my brain to work when it felt like heavy, sodden porridge, plus the dancing, the travelling, what was going on at home and the bullying… I don’t know how I survived it to be honest.
As year 11 turned into year 12, I became more and more unable to cope. It was a nightmare. I seriously do not know how I pulled out pretty average to okay marks, because I was not completing so much of the work, it was beyond me. I constantly stressed and fretted, had constant nightmares when I did sleep, usually falling asleep at my desk after 3am.
I did fairly okay on paper in the academic side of Uni too, but have retained absolutely nothing. We might have been dancing full time still, but there were subjects like Kinesiology, Anatomy, Music, Dance in Education, Dance History, Alignment, and so on. Many of them were hard, most of them were beyond me.
Finally, I got to the point where, after constantly being dizzy and ditzy in classes, actually ending up with a stress fractured big toe from falling out of a pirouette when dizzy, collapsing, and constantly being ‘not quite there’ (dissociating, but I didn’t even know there was such a word at the time let alone what was happening) – I was politely kicked out of the dance performance strand, told to go see a counsellor ‘or something’, and given the entire university to choose from in order to fill in the credits I still needed to graduate. It was the worst time of my life so far – far trumping the bullying, the abuse, the rapes, being homeless – far far more painful.
Because ballet was ALL I had left. I’d lost my mind, I was unable to retreat into my beloved books, my family had rejected me as much as I rejected them, I had no real friends, I’d lost my innocence AGAIN to Wanker, and now, I lost something I had lived, slept, breathed now for most of my life – dancing.
I was done. That was the point I tipped over the edge from having not all that critically serious an eating disorder even though it had affected my life so badly already – to full blown, deadly, life threatening, no-turning-back GONE to it.
Because I had nothing, nothing left to fight for.
But if I had thought that the losses stopped there, I was wrong.
Since then, I’ve lost pretty much everything I ever worked hard for. Lost my degree, because despite having only half a term’s work left to do, trying hard to keep completing it while inpatient, I ended up having to defer. The ten years to complete the course in were up in 2005. I know I can probably ask for special consideration, but the course is now so far removed from anything I could do with my life now, that it’s pointless. I’m still not cognitively well enough yet to study again anyway.
I lost my ability to volunteer. I had to eventually quit the positions that were too physically taxing, like the Red Cross cafe, the soup van, and the homeless centre kitchen. One of my supervisors later told me she had lied to me about being ‘obsessive compulsive about how her floors were mopped’ and that she actually loathed mopping them, simply because she couldn’t bear to see me doing them and would rather do them herself. I also found myself having to leave the less physical positions because I couldn’t think well enough to help a cultural arts organisation create a library from their resources, nor could I continue in a mail room when I started doing silly things like writing addresses backwards or twice or in the wrong place, or simply forgetting what I was meant to do with the envelopes. Volunteering had been amazing for my self respect and self esteem, and I felt I’d let everyone down horribly, and was now just a complete sponge on society rather than contributing in some way, however small.
I lost my rights. For over ten years, I didn’t have the basic right to decide if I even wanted to live or die. I couldn’t turn down going to hospital – if I did, or I left, the police were sent to bring me back. My treatment order forbade me from leaving the state without permission. Once I stayed too long up the coast and they cut my money off in order to force me back home.
I lost my financial independence despite having done very well after running away from home without ever before really having access to money, or any money to have access to anyway. From there, I persevered until I had an income, I taught myself to budget, paid all my bills religiously, even saved up some savings. I’m still having harsh reminders of the financial situation – today failing my first ever credit check, because I’m still a public trustee client, and they don’t like that. I’ve never had debt, apart from my uni fees. I’ve never had a credit card. Never had an unpaid bill or fine. Never defaulted on my rent or anything like that – and yet I’m a credit risk, despite being able to show in detail that I CAN pay them back for the phone I was trying to purchase, we had even budgeted for it – because I need a trustee and therefore I’m different and risky.
It was SO humiliating. It reminds me again that I’m only now looking for my first ever paid job, when many of my peers are in senior positions. I’ve never driven a car – not even once. If I want to buy something or have a legitimate expense needing to be covered, I have to submit my request and three different quotes to my trustee, who blathers about and then issues a yay or a nay, very often a “nay” and “you cannot afford this”. They put just enough money for my groceries and Shalimar in my account weekly, so that I can be driven to the supermarket, helped to buy my food, and driven home to be helped to unpack it.
And I really, really appreciate that help, it just is hard to accept that you are only 34 and being helped by people who usually help the elderly and the severely disabled. The home and community care team help me still with shopping, housework, and sometimes with transport. Thankfully I no longer need personal care – showering, dressing, medication etc. Without them, I wouldn’t have been able to stay at home, instead ending up most likely in a nursing home for the elderly.
In hospital I lost my dignity, needing to be toileted and bathed and dressed. My body was poked and prodded and stuck like a pin cushion. I had no right to refuse what they put into me, a very violating feeling. Even my output was collected to be measured and tested. My body wasn’t my own – I was forced to carry weight I didn’t want, to save my life, but it still felt horrible to have utterly no choice about it.
Physically, I’ve lost teeth, my hair, my long term health and life expectancy, my bones are severely osteoporotic, I lost the ability at one stage to walk, stand alone, even sit up or hold my own head up. I’ve lost my strength, my energy, my youth; my looks, my vitality, and much of my respect for myself not to mention the respect of others. And heartbreakingly, I most likely will never be able to have my own babies.
I’ve lost my confidence in many ways, and it keeps getting dented again and again. Just when I think that I might just be starting to be an acceptable human being, somebody says something cruel, or I’m reminded in some way of how ‘behind’ other people I actually am, as happened with the phone and credit check. I know this is going to happen a lot more as I still have such a long way to go, but at the same time, I’m so very grateful now, for what I still have, and what I am clawing back little bit by little bit.
I’ve been off the involuntary treatment order for a year now. I still risk being put back on it in a split second if I don’t attend my appointments or seem to be struggling, but things are also more negotiable in that I can see my GP every three or four weeks instead of weekly, my case manager sometimes lets me go an extra week without seeing her, etc.
I can catch buses and trains again. I got to a point where I just couldn’t, my legs were too weak to get on and off the buses, and the whole transport thing was exhausting. Not to mention my pure fear of all the people and the fact that people WERE staring, grimacing at, even spitting at me for being emaciated and therefore ‘disgusting’.
I still struggle to read my beloved books, instead spending more time reading shorter articles and doing sudoku puzzles. I’ve just started to dance again – proper ballet classes and pilates classes, after a year of physio to get myself strong enough to do it. I’ve been working with an employment agency for those who have been out of the workforce for a long time (or never been part of it!) because of illness to get a job, most likely in a library or as a vet assistant. I’ve been going to art groups and will be part of a small exhibition in a few weeks time.
I’ve built up a circle of special friends, and trusted supports, and I am fast learning that people actually do like me for me, and that I don’t have to change in order to be accepted by anyone. That we are all human, and all have our ups and downs, our good points and our failings.
And I feel like I have more of an actual Future than I’ve never had. A few years ago, there was NO future for me. I WAS dying – it was simply a matter of when. So to be here, now – that’s a HUGE reprieve and I thank God, thank the universe, thank everything and everyone every single day. Because I’m so lucky, and I’m so grateful, and life is the best it’s ever been from the day I was born right up to now.
I still battle with depression despite that, which can be frustrating – how can you be the most depressed you have ever been AND the happiest ever? But that’s how depression is – non-reactive depression anyway – it has nothing to do with being happy or contented, or being positive - because I AM largely a very positive person now. It’s more a perfect storm situation – a mix of everything, chemical imbalance, hormones, life situation, stress, etc.
I still endure chronic severe pain and my future in terms of bone strength is up in the air, but I’m in a lot less pain and a lot less ‘trapped in a broken body’ than I was even a year ago – and to be this ‘free’ is simply wonderful. The hour or two that I’m dancing each week, is a time when I somehow manage to step out of this world entirely – not by dissociation – into one where I’m blissfully peacefully content, where none of this has managed to touch me. This is just the beginning for me and ballet, a new beginning.
I know there will be more new beginnings and life taken back by me, as long as I keep hanging on and keep on stepping forward. Each step is tiny, often frustratingly so – and yet essential, important, and by no means inessential.
My message with this post is that our lives are far too high a price to pay for an eating disorder. Not even for it to help us cope through something we simply cannot handle. There isn’t any point being able to cope emotionally with something if you haven’t a body or a life to return to when you have finished coping, is there?
Much of what you lose might not even seem that big a deal at the time. There have been points where I was told I was going to die, and yet my eating disorder was stronger than my will to fight it and live. I certainly didn’t care about losing most of my hair when I was lying in hospital anyway. Who needs to drive, when the furthest you are going in the next six months is in a wheelchair to another appointment in the hospital? Who needs money when there is nothing to buy? Books when you need all your remaining brains to plot how to sabotage yourself further? Friends when you loathe yourself?
Who even needs a life, when it’s not a life worth living?
I am extremely fortunate. That I am even alive today, is described by most of the professionals I’ve seen as a miracle. MOST people do NOT get miracles. Most people are NOT so lucky. I have no idea why I was given this not even second, more like second hundreth, or second thousandth, chance – but the odds of me getting yet another go if I throw this chance away are miniscule.
Thankfully, most of us do NOT die. MANY of us do – but most of us live. And there are consequences that every single one of us who makes it alive through this have to face – for the rest of our lives. What we didn’t care about in the thick of the struggle, might haunt us for the rest of our lives. I know there will be plenty of ways that I’m reminded, daily, that I sold my soul to the devil of an eating disorder in my youth.
I know it’s much easier said than done – there was NO negotiation with my own eating disorder’s demands of me when I was more unwell, and imminent death doesn’t scare something when wiping you out is it’s goal – but if reading what I’ve lost to this means that even one person out there stops and seriously considers what she’s got to lose rather than blindly following the carrot dangling in front of her, then it’s been worthwhile.
Because you may lose your life, but I can promise you, you WILL lose pretty much everything.
What have you lost? What do you stand to lose?