When I began to write about living life with a chronically disabling illness, it was a cathartic exercise as well as being a way to keep in touch with the many people asking after my health. Also, I was determined to make the best of this new life that had been thrust upon me and hoped to find people and experiences online that would inspire, assist and enlighten me.
Unfortunately, writing about my life now bores me rigid and feels totally pointless. It’s not cathartic. It’s all just more of the same - losing the use of my arms and hands, facial paralysis, deafness, eye problems, more drugs, more relapses, more side effects, more pain. Yeah, yeah, we’re all sick of it, me most of all. What in hell else is there to say?
My friends don’t even ask after my health and situation other than in a polite way. It’s always the same; they all know it’s crap and that I hate talking about it. Most of them have moved on in life anyway. That happens and would have even if I weren’t shut away in my prison dealing with health issues that are, thankfully unknown to them for the moment. It’s the natural order of things. We stay in touch, mostly, but at more of a distance. I don’t see them so much. The logistics are difficult and they have new friends, new lives, different pressures and pursuits. Under more normal circumstances, I would too but, in fact, I don’t because my life is, uncontrollably, not normal.
And, isn’t that just the nub of my problem? Ideas, ambitions, hopes and aspirations continue to light up my mind but all founder on the dwindling physical powers of my neurologically deficient body. I just have not been able to counter the impact of this on my life and, worse, no longer think it possible to do so.
For years, I hoped to find easier, better ways of handling my physical problems especially through the online presence of others like me but the solutions I have been looking for are just not out there. For people with the extent of profound physical disability that I have, there is no way to live a life that is comparable to ‘normal’ functioning. Pretty much every activity 24/7 is a tedious pain in the ass and every other place you can think of … and that is with all the financial resource we are able to throw at it!
Oddly, I am well aware this makes me lucky … having at least some financial resource to throw at the problem. Financing gives me the best of wheelchairs, car, carers, aids, equipment, whatever I need to be comfortable and safe and I am both of those things. What I am not is independent. What I am not is able to live a useful or creative life or even one that closely approximates normal.
As I sit here today, newly energised after yet another, numbingly, crushing relapse, it seems to me that this is it. I am at the ‘best’ level that I will ever be able to achieve in this new life I lead. All of my will and determination to achieve more is as nothing against the remorseless and uncontrollable progression of my illness. In the game of life, my illness controls me; I am its’ puppet or, indeed, its’ bitch. Start an online course - smack, lose your sight. Think about a business plan - smack, lose the use of your hands. Organise a social event - smack, lose your hearing.
And so it goes on, every new attempt to create, to live, shudders to a grinding halt as illness flexes its’ barbed whip rendering more bodily functions inert. There is no certainty, no time to relax. I am never able to rely on having the physical wherewithal to do what I want when I want. I cannot commit to anything. I must live only in this moment, now, and what I am able to do today, never knowing, from one day to the next, what that will be.
Is it defeatist or realistic to accept this? It feels like defeat. I chafe against my lack of control constantly but that is how it is. I am certainly not alone in having to face up to the fact that life is never going to be as I want it; that many hopes and aspirations must be let go.
Maybe it’s time to give up, be done with it. I am not inspired, enlightened or assisted by anything to do with disability and illness. It all sucks. Compared to others, my support resources cushion me from the worst that this life might be. I am in the tiniest percentage of those like me to have such support which makes me unlike not only my own friends - living their nice, normal lives - but others like me who live, with no choice, in considerably less comfort and safety and to whom my life seems easy.
So, do I really want to keep writing about my life on wheels when all it does is depress me? For the first time since I set my website up, I am unable to see who in hell gives a toss if I don’t myself. Maybe it’s time for me to take a break?