I don’t often get in this kind of mood and I know that probably a lot of it is just that I’m really overtired. I’ve been pushing myself pretty hard since this past weekend and I just started a new part-time work-at-home job grading student English/language arts essays. But despite my better judgment, I’m going to indulge in a rare bit of venting/whining.
My disability sucks; that’s all there is to it. Maybe this is a delayed response to finally finding out what I really have; I don’t know. But I’m learning all the little ways that my disability is progressing and realizing that most likely, I’m never going to get better. The reality of that is really weighing on me heavily.
My left arm from my elbow through my forearm has been sore and exceptionally weak for a couple of months now. I told myself that I was probably just repeatedly sleeping on it weirdly. But it turns out that it’s actually a symptom of one of my diseases and probably isn’t ever going to go away.
Because I still wasn’t ready to admit defeat in terms of trying to get off of disability, I applied for a full-time job at home doing TV captioning for the deaf. I got to the point of doing extensive assessment tests for the job and I easily passed all of them except one, the one that measured my reaction time in response to hearing cues.
The recruiter wrote to me and explained the situation, saying she’d give me another chance to take that part of the test, since all the rest of my scores were so good. But nope, I still couldn’t pass it even on my second try.
The weirdest part about that whole thing is that I’m 100% certain I would have easily passed that section even just a couple of years ago. Based on that, I can really tell how much I’ve lost skill-wise in just a couple of years.
In the day to day of things, I don’t often notice my limitations and I still think that I’m capable of doing all the same things that I used to do. Times like these are a rude awakening that remind me that no matter how much I want to believe that I’m still capable, believing that doesn’t make it so.
I’m asking myself all sorts of questions, chief among them being why this had to happen to me. Why couldn’t the faulty genetics have been divided up a little more fairly, with me and my sister each getting one of these diseases, rather than me getting both?
And in truth, I’m honestly scared of the fact that both of these diseases are progressive. If I’ve lost this much in just the past few years, how much more will I lose in the coming years? How will I ever be able to take care of myself when my husband’s gone and my condition gets worse, when there are already so many things I just can’t do now?
I know these questions have no answers. I know life is random. And I also know that for the time being, anyway, my life is still pretty good despite these challenges. Worrying about the future won’t change any of it. I just wish, with every fiber of my being, that I had more control over my destiny.
At least I can still read and write (even if I can’t write by hand anymore.) If I ever lose those abilities, I really don’t know how I’ll cope.
Now it’s time to go to bed and see if my outlook is better when I wake up.