You haven’t heard much from Safe Spaces lately. I’ll admit part of it was laziness, part of it was life, part of it was feeling like I didn’t have anything to say that was worth reading. However, since July it’s been that I physically couldn’t write, say, or do anything. In June, I was swollen from a medication, and I felt like a nerve was being pinched in my neck. My fingers started to feel numb at the tips. I switched medications, the swelling went down, and my pinched nerve no longer hurt, additionally my fingers were no longer numb. But my balance was off. We went on a cruise, and we thought it was being on the water. When it didn’t get better on land, we wondered what was up, but when we returned, I got COVID, and my balance wasn’t really on our radar. By the end of the week though my hands were numb, and my feet were numb. The numbness quickly spread to include my entire arms up to my shoulders and my legs to my knees. I was walking around like Egger from Men in Black, you know, the guy filled with bugs! Lol, only it really wasn’t funny, it was scary. At the same time, my hands wouldn’t work properly…I dropped things all the time and if it was small, I couldn’t pick it up. When eating I couldn’t use utensils without looking like the Beast from Beauty and the Beast. I waited two weeks before going to the doctor because Google said peripheral neuropathy is sometimes a result of COVID but usually resolves within 2-3 weeks. Meanwhile I was falling so much I borrowed a cane from our 98-year-old grandmother.
When I finally saw the doctor, she said my legs were hyper reflexive and my hands and arms had none. She took blood, ordered a neurology consult, and gave me a steroid. Neurology wouldn’t see me until November, my blood was normal, and the steroid did nothing. When I called to get a prescription for a walker because I couldn’t grip the cane and a friend said I would walk better with a walker (thanks Karen! Yes- my friend’s name is Karen, I’m not being sarcastic. lol). My doctor finally consulted a neurologist, and they said my rapid deterioration constituted a neurological emergency. So, off we went to the ER where we spent 6 hours. They took my blood, did a CT of my head, and made me pee in a cup that they never even tested. No neurologist evaluated me, and they sent me home to keep my November appointment. That was August first. This had been going on since the first week of July.
When the neurologist that my doctor consulted heard I’d been sent home without a spinal tap, MRI, and nerve conduction test she got me in that day to be evaluated. The next week was a whirlwind of appointments, the last of which was with a neurosurgeon. He said my spinal column was being severely pinched and that I needed surgery as soon as possible to fuse my neck from C-2 to C-6 and so it was scheduled for the following Friday August 25.
After four weeks, I could use my hands somewhat better- I was still not very graceful with utensils and I still couldn’t wash my own hair, everything was still numb, and I still needed the walker for stability, but my gait was smoother.
I have a long road ahead of me and I may never get all my functioning back. I tell you this story, not for attention or sympathy, but because this experience has opened my eyes to the life of those who are differently abled. Up until now, we’ve focused primarily on the LGBTQIA+ community. However, Safe Spaces was born to be a voice for everyone who experiences discrimination, including those who are differently abled. Living this story has inspired me to write a series of posts (they’ll be much shorter than this one, I promise) with words of wisdom for those who are currently trying to find a new normal, those who love and support them, and those who encounter them as strangers, acquaintances, or friends. Yes, they are really for everyone, especially those of you who think they don’t need them.
