One of the worst things about paralysis is not being able to get things that you want when you want them. And having to remember everything you wanted in advance before your spouse leaves the house for hours.
When I was getting the half-assed, slip-shod physical therapy at the hospital after I was paralyzed (no concommitant mental health help, either) and before they sent me home to....nothing on a holiday weekend, they told me to learn to make lists of everything I'd need.
You can't always predict what you will want five hours in advance. Also, not having physical therapy since the pandemic began has wreaked havoc on me. I am so decompensated. I honestly thought the lockdown would mean some effort to fix what was broken for #disabled people. Wrong.
The physical therapy room at the hospital had this little kitchen where they taught you to use your kitchen from a wheelchair. It bore no relationship to my kitchen or any kitchen I've ever had, house or apartment. In reality, kitchens are completely inaccessible to wheelchairs.
I've made exactly one meal since I was paralyzed in 2016. It was so arduous I have never tried again. I know I should try, but I don't want to. I feel as if I have to choose which things I can expend energy on and work is always top of mind. Your life gets narrower all the time.
Since the pandemic cut all in-home services (I used to have a nurse 3x a week and PT 2x.), I am reliant on The Wife for everything. And so you restrain and contain because you don't want to ask too much. Spouses shouldn't be caregivers anyway. In a fair world they wouldn't be.
Also in a fair world the homes of #disabled people would be retro-fitted by the State. Instead, poor #disabled people are just stuck, homebound, and wealthy disabled people are living lives near-comparable to their non-disabled peers because they can afford to.
• • •
Missing some Tweet in this thread? You can try to
force a refresh
