Learning How to Be Disabled

Happy Monday, everyone!

So, one thing that I have only so far briefly mentioned in passing – in a post about my epilepsy – is that I have multiple sclerosis (MS).

For anyone who doesn’t know, MS is a condition that affects the central nervous system (CNS). In our bodies, we have this stuff called myelin, which covers the nerve fibers in the CNS. With MS, a person’s immune system attacks this myelin sheath, which results in scars or lesions. These lesions interrupt the messages that travel through the nerve fibers, and basically result in things not working so well.

Sometimes, it causes a delay in when signals from the brain are trying to reach certain parts of the body – like when I tell my fingers to type. And other times, it causes a delay in when signals from certain parts of the body are trying to reach the brain – like when my arm tells me I’m leaning against something hot.

My diagnosis was one of Relapse-Remitting MS (RRMS), and I spent the majority of the years following this diagnosis in a state of remission. But the thing about having a condition like this is that one can get far too comfortable during remission, and then when relapse comes back around, it feels sort of like a slap in the face. Or at least this is what it was like for me.

Whilst in the midst of my worst relapses, I was amazed at just how much I couldn’t do – especially since the changes seemed to take place practically overnight. It’s like, I would go to bed one evening, and the next morning, I’d wake up unable to move properly.

I think one of the things about being diagnosed young was that I didn’t really have any sense of what it meant for my future. I mean, at the age of 14, I didn’t really do much. So, for me, the transition to adulthood meant learning how to be disabled. All of a sudden, this whole world of complications opened up ahead of me, and I had to know how to access the appropriate help and services in order to survive.

What I ended up doing was making what I call my ‘disability life plan.’ This is a plan that details all the sorts of practical things I require help with when I’m in relapse. I started this by noting down all the things that cause me trouble, and the stuff that I can’t do. I then added in what support I would need in order to be able to get certain things done. I feel like this is a very useful document to have, as it enables me to get all the stuff I might need to be organized into one place, and means that when the state of my health does take a nosedive, then I’m not left totally stuck and unable to do anything.

I know it may sound strange to suggest ‘learning how to be disabled,’ but it’s true. This is because it’s not something that everyone with health conditions just magically knows; you need to have the right information and know where you can access help, and then how to use that information to get everything into place, and it’s just not possible to do it all on your own.

“I am choosing to live, to struggle, to overcome, to slip, to fall, and to rise.”


2 thoughts on “Learning How to Be Disabled

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