When hope is not enough

Action and reaction, cause and effect, dendritic output and neuronal necrosis – what, and to what effect? My body doesn’t obey, though it wants to. It has to want to. I need it to want to. 

It doesn’t obey but that doesn’t matter anyway. Because I wasn’t born with it and didn’t inherit it, so I’m on the outside. I don’t fit with others who have my condition; they’ve thought for long enough that an acquired version of their disease – my condition – can’t progress. But it can; and so it does. I’m too rare a case for them to know how to interact, integrate, without that moment when they nervously correct themselves for saying something that I shouldn’t  be able to understand, and they worry they may have offended me. But I do understand. I wasn’t born with it but I understand some small part of it. At least give me that. Please? 

An outsider to the outsiders, told that I can’t understand because mine is too different in origin. Even though it’s getting more difficult to ignore the vertigo, sleeplessness, restlessness in the legs I can’t rely on. 

Trying to express this to my family, my friends – ‘you’re doing far better since the surgery’. Yes; I know. But is what I’m experiencing happening to me because of my cerebellum, or brainstem? With overlapping symptoms, who can say?

What can keep my mind quiet when it gets to be too much? What about right now?

I learn about the brain because mine doesn’t remember how to obey me. And isn’t that something?

I spend thoughts on willing people to take me seriously despite my impediments. Despite dysarthria and ‘word soup’ sloshing in my head. They don’t, so I continue to study and wish that my body could obey my brain again. They hear me speak and see me move, and I’m suddenly dismissable. Ignorable. 

I’m sorry, but some of you wouldn’t have a job without people like me and my condition. Fucking acknowledge me. At least give me that. 

These disorders have rendered me vulnerable. Needy. I hate being me. But I like to be me. Please let me be me.

I study without purpose. I keep physically active, because I love it as much as I need it in order to combat the effects of my condition. I paint because I don’t know what words can describe the emotions. Selective, topic-specific aphasia that I can’t control. Can’t describe. 

Maybe it’s in my imaginings. Maybe it’s the new hysteria. But it’s not. I don’t know how to describe or express it, is all.

I hope. But what next, when hope isn’t enough?

One response to “When hope is not enough”

  1. Bloody brilliant! I hear you, I understand you, I acknowledge you and all YSS for their contribution. But then maybe it takes one to know one. We need more YSS professionally working in stroke research and health services. But they too are outsiders – different to peers and different to colleagues. Be proud being different – you’ve earned it – promote your expertise. Don’t give up, sometimes others do but you don’t have to, you can achieve what others cannot. Learn to manage the arduous residuals and go do your best in your outstanding contributions and work.


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