Learning To Be Disabled

April 20, 2023

I have come to the realization that I don’t know how to be disabled.

When I first became ill, I incorrectly assumed I would recover quickly. Thus, I was in limbo. I couldn’t work and I was in an unbelievable amount of pain.

As days turned into months, I reluctantly began acquiring equipment to help me, such as a grabber, shower chair, wheelchair, etc.

Even after one full year, I still believed someone would fix me soon. As such, I continued on with researching #CSFLeak by consuming various videos and literature, and getting various treatments.

I spent my days trying to distract myself from the pain by playing mindless games on my phone and doing other unproductive things that my body allowed. When the pain was severe, I’d simply close my eyes and wait for it to pass

So now it’s getting close to year four and I’m doing the same things. Four years of laying in bed. Four years of mindless games. Four years of unrelenting pain.

Time has seemingly passed me by. It’s as if I was in a coma and woke up years later thinking it’s still May 10, 2019 (the day it all began). Then I am reminded of reality when I see all the grey hairs on my head, a drawer full of expired makeup and an entire closet full of clothes I haven’t worn in ages.

It occurred to me that not only has my body been in limbo, but my mind has been on a temporary hold as well. Maybe if I believe I’m disabled, it means I’ve lost hope in getting better.

Do I try to change what I do and how I think everyday? Do I accept that I’m likely sick for life and learn to normalize it somehow? What does that even mean?

I’ve tracked my upright time using an Apple Watch I bought a couple of months ago and I’m averaging 24 upright minutes per day. What does, or rather, what can one do with such limitations and live out the rest of their life? I don’t have an answer for that. I think it’s because I want to stay in limbo. I don’t want to concede to this illness but I don’t know what to do.

First posted on Global Genes RARE Portal HERE re-posted with permission.
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