Nobody will ever make me feel guilty for doing stuff, for having a social life, for enjoying my life. I fight with my body, with my health, with uncertainly, with an inaccessible world, with ignorance, my own insecurities and my own better judgement on a daily basis to lead the life I do. I don’t want admiration, congratulations or sympathy for my situation, but I’m unwilling to accept condemnation or criticism for enjoying the life I’m lucky to have, for doing everything in my power to overcome whatever challenges might come my way to grasp tight hold of each and every opportunity that fate affords me.
A little less than a month after my sixth birthday I was injured in a road traffic accident, which caused the death of my dear mum and left me paralysed from the chest down. During my childhood I had to undergo numerous operations and spend long periods of time in hospital. I never learnt to swim without armbands or even to tie my shoe laces properly; I was learning how to catheterise, train my bowels and how to move my body from place to place using my fists. I never felt unlucky and I was rarely angry about the situation but I’d be lying if I didn’t admit there were times when I was so, so sad about things. There was too much to do to be sad for too long though and tears got me nowhere, sheer bloody mindedness, incessant determination made things happen. The choice was an easy one. Just deal with it and do it.
I remember vividly the struggles I had learning to dress myself, a process I had to work on for years, starting with just my socks, a few months after the accident, a task alone that took me over half an hour the first few times. I accomplished each new necessary skill, that was in turn followed each time by a new challenge; unfurling my clawed fists to do up a button, finding the balance to place a t-shirt over my head without toppling over, rolling repeatedly from side to side to get my trousers up, learning how to put on and do up my back brace without assistance. I didn’t care how long it took me to accomplish these things, despite the embarrassment I often felt at my slow progress or the frustration of so many full hearted unsuccessful attempts, I was always going to get there, giving up wasn’t an option. Other people my age were able to dress themselves and so would I. I needed to be just like everybody else. It took until I was about 13 until I could do it all on my own, by 15, I was able to do it all myself in just under half an hour. I wasn’t proud that I could do it, I was just relieved. It was something I should have been able to do.
I can’t do it anymore, I struggle to balance without holding onto the bed, I can’t put on my body brace on my own and I can’t pull my trousers up much higher than my knees without lying in a painful position. When I have the time, the inclination and no audience it takes me up to half an hour to pull my trousers past my twisted pelvis and over my bottom, which forms a bustle way out of line with my shoulders, themselves way out of line with each other. It breaks my heart every day that something I worked so hard to achieve is completely impossible for me now. Some days that pain is so hard to face that I only put on underwear and a vest, other days it takes me hours to put my head in the frame of mind to face the fact that I will need to ask for help. Most of the time, I ask for help immediately to get the process over with as soon as possible for acknowledging what I’m no longer able to do is sometimes so gut wrenchingly painful for me that I can’t even face leaving the room.
Then there are times when I wake up after a good sleep, ready and raring to go, so eager to enjoy the day that the difficult process of getting dressed doesn’t cross my mind, I just get on and do it. With an exciting day ahead of me, the opportunity to spend time laughing with my beautiful nephews, gossiping with my fiercely loyal mates or simply having a pint in the pub with my saint of a partner whose patience and dedication to loving me is unwavering, the difficult start to the day matters sod all. They give me strength, joy and instil in me a determination that says fuck you to anything that tries to stand in my way. I owe them my time, my will power and my commitment because they are the people who invest in me when I get too tired, too stiff, to stressed or too sad to invest in myself. There are times when I look in the mirror and hate everything I see, times when I feel nothing but contempt for a body that is always letting me down and hopelessly inadequate of fulfilling the dreams my hearts sets itself on. They always love me, all of me. None of the stuff that has the power to knock the stuffing out of me, matters one jot to them. Their love, their kindness, their acceptance of me, as I am, is often the only thing that can force me to cut myself some slack. I accept that if they love that much that I ought to at least like myself a little bit.
I don’t have to prove anything else to anyone. To people I don’t know who make judgements about me, to the media that misrepresents people like me, to a government that wants to analyse, classify and pigeon hole me. I will prove they’re wrong about me because I want to, because I can, not because I have to, not because they’ll make me feel guilty if I don’t. I’ll carry on fighting, to laugh, to love, to live, to work when I’m healthy enough, help others when I’m able to and contribute to society the best way I can.
I will not feel guilty or worthless when I can’t. I won’t feel angry or bitter and I won’t punish myself and the people I love, who will be the ones picking up the pieces and putting me back together again, by working my body into the ground and risking my life. When Ian Duncan Smith is spending every waking moment next to my beside when I’m in intensive care with Pneumonia then starting a new job, when David Cameron is bombing down the motorway, after taking his kids to school and before his working day to check I’m being taken care of properly, when journalists are up late at night convincing me I’m worth something and when the Tax Payers’ Alliance are fighting for my right to be heard and appreciated. Then, they can have my guilt.
My pride is my own, not for anyone else to take. I will make the best out of my life, not because I owe it to them, because I owe it to myself.