Health

The disabled writer: MS


I have been disabled since the end of 2017. Prior to that I struggled to work with fibromyalgia and chronic daily migraine with aura. Which was Not sunshine and rainbows. And, yeah, I developed a long enduring depression which I think is pretty freaking normal given the hell of working in such pain, but whatever. So pain does sucketh. A lot.

The disabled writer: MS

And then this happened

But then I got dizzy spells. And then they got worse. And then enduring. Then it became vertigo bouts with enduring dizzy spells. Which turned into disequilibrium, vertigo bouts, and enduring dizziness. And last but not least, balance issues. I had to go off work. And I was told I could no longer drive. I saw an ENT and a vestibular clinic. They did tests. They did an MRI. And the MRI came back with quite an ugly brain really- lesions all over. Now, chronic migraines cause lesions of a sort. But these were in addition to those. And in specific places that were not so good.

And eventually I saw a neurologist about it… and you might have guessed this… Multiple Sclerosis. Yep. Like I was not already disabled enough I just had to add something shittier to the mix. I have firmly reprimanded my brain on this, by the way. I told it I rather do not approve of it at all, at this point.

Feeling the feels and not liking it

But such is life, eh? It isn’t what happens it is how you react to what happens. And how I reacted is having ALL the FEELS at one time in one day. And then I settled down. I have been chronically ill for well over twenty years… I have coping skills on my coping skills that I developed from other coping skills.

What one does before coping

But before those kicked in I went out with some friends and I got drunk. Because that is what one does. And I sang karaoke. Because I felt like it even though I am extremely introverted and was terrified… I was like what harm could it actually do? So I sang the Logical Song by Supertramp (because I was fairly sure I knew all the lyrics). And apparently I rocked it. I can’t tell. I have no concept if I sing well or not but I was told I did not suck balls. I asked specifically if I sucked balls and was told no I did not and was in fact singing on key and did quite well. So bravo!

I still have not fully processed it yet I suppose. There is that distinct fear of the future with it. But I did well on my physical. And I need the MRI contrast of my brain and spine to see how bad things are before treatment. So I am thinking as far as MS goes I am in a good spot to start treatment. The tricky part he said is figuring out what symptoms are MS and which are FM and which are Migraines… and well the overlap is insane. So I have been looking at more recent anomalies in my health to see what is what. The anonymous symptoms that do not quite fit with FM or are substantially worse than they should be. But obviously it is intimidating. But I have coped with illness and a fuckton of pain for a very long time. I have resilience and perseverance from all that. I think I can deal with whatever comes my way.

But it does affect my writing. These insane typos, grammar errors… like suddenly changing tense? What the actual hell? Never did that before. But that is now I thing. And being on disability means I can’t afford an editor but hoping to work out a trade with one. I hope because literally on disability you make way less than a living wage… we are not really valued by society. We don’t really get raises. And even though so many things are out of pocket for treatment… which we cannot do because we have literally no money… they never consider that in what they give us. I am supposed to start these vitamins and like with what money, man? Vitamins are not cheap. I have bills to pay. And it looks like I’ll be going bankrupt because I can’t pay the bills I could when I worked… and that is insanely embarrassing to me. As a financially responsible person, who used all my savings in the disability process and then accumulated debt waiting, I feel crappy that now I have to go bankrupt because I cannot work and have no idea if I will ever be able to work now.

We are not defined by our disabilities though. Yeah, they cause limitations but they do not diminish who we are. They can change our sense of self and our self-identity especially with the loss of work but that is natural. One learns work is a thing you do not a thing you are. Anyway, we are much more than our disability. It is a thing we have and cope with not what we are. And we have to focus on what we can do, not what we cannot.

And I can write. And I will continue to do so. Gives me a sense of purpose and it is my passion. I have to have Something, right? You lose so much you have to hold onto something that is You.

See also

Lost Magic
The disabled writer
Creativity and depression

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4 thoughts on “The disabled writer: MS”

  1. You are very strong and courageous for telling your story. Please read another blog on Word Press by Steve Salmon. Steve is a writer with severe cerebral palsy confined to a wheelchair. Another amazing individual who is much more than their disability I am humbled to know of you both.

    Liked by 1 person

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