It was at an informational luncheon for MS that I met the first person to tell me she didn’t work anymore because of the reduced mental capacity she had due to the disease. This was in the beginning of my MS Journey; before I had many symptoms. I remember being in wonder at how someone could have such mental impairment that they could no longer work, yet when I talk to her she seems bright, competent and normal.
I used to wonder if I could ever be disabled that way and what it would be like. Now I am disabled that way and I often wonder (on my good days) if I truly do need to be on disability. It turns out I had the perfect assessment test handed to me in the first week of June.
My 3 children got off school and home for the summer. In the first week of this new schedule, I volunteered at Vacation Bible School as a group leader until noon every day. The kids were in my group. And the temperature was over 100 degrees outside every day.
Under these conditions, I have been able to prove to myself, once again, that I am disabled. It’s not that this doesn’t happen to me very often, but I end up questioning it again every time I have a good spell of a week or more.
The mental damage part of MS is more difficult for me to accept and not be surprised every time it happens than the physical part. When my disability was mostly physical, it was obvious to me daily that I could not work. Now that it is more mental, when I live my life daily in the ‘cognitively-slow friendly’ environment I have set up for myself at home – I sometimes question it.
But when I disrupt my calm home environment and add in all the constant distractions of life, I am immediately reminded. This is a reassurance to me that I am doing everything I can daily.