My Disabled Future.

An elderly patient being pushed in a wheelchair by a carer. Taken from behind.

Audio:

When I think about my future, some things are very clear; I want to continue my dual careers in medical research and in writing, I want my marriage to last, and I want to have a safe and welcoming home filled with cats. I’m still not keen on the idea of having children and would probably make a horrible parent if my track record with houseplants is anything to go by. I might advance my education if I feel up to it at some point. One thing I distinctly don’t think about in regards to my future is my disability.

It is highly likely that I won’t have to contend with endometriosis for the rest of my life, as if I don’t manage to persuade a doctor to perform a hysterectomy over the next three decades, the menopause should do the trick. I would much prefer not to have to needlessly go through decades of crippling pain to reach the menopause, but it’s a possibility I must face. Either way, there is probably going to be an end to the endometriosis.

It is also possible to recover from M.E even after decades of severe illness. Unfortunately, this condition doesn’t have an expiry date like endometriosis does, and it is equally possible that I will have M.E for the rest of my life. The severity of the condition will probably fluctuate, but beyond this not much is certain.

One disease that will in all likelihood be with me until my dying day is asthma, and while for me this is the least disabling of the illnesses I contend with on a daily basis, it’s also the most likely to prove fatal. If I don’t manage my symptoms and take appropriate actions upon having an asthma attack, an increasingly frequent occurrence as of late, the asthma will become a very serious and very immediate problem.

When I think about the future in regards to my disability, I find it best to consider the most likely outcome; that I will on some level be disabled for the rest of my life, and I must rely on medication and mobility aids to be able to lead a relatively normal life. Some people assume that my pragmatic outlook actually shows that I don’t “want” to get better, as if I actually want to spend the next few decades dealing with pain, fatigue, and breathing problems. This is not even remotely true. Ideally, I would have a hysterectomy, and they would find the cure for M.E and asthma, and I’d never have to take anything beyond the odd paracetamol again. Sadly, that is not likely to happen, and I do not wish to spend my already limited energy dreaming of the impossible.

If I planned a future free of disability, I’d be setting myself up for failure. If I plan a future, something which I shy away from anyway since I know how easily plans can be instantly derailed without warning, I plan a future where I am disabled. Not only am I setting myself up for success by thinking realistically and planning for these eventualities, I also leave the possibility open for a pleasant surprise. It’s not about what I want to happen but what is most likely to happen, and all the other things I want are a lot more likely to happen if I don’t put unnecessary barriers in my own way. I’ve not given up on being well; I’ve given up wishful thinking when the means for a decent existence are right before me, whether or not I am disabled.

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