Somewhere between the triage unit off the emergency room and the main entrance, I went blind. Not the “everything went black” kind of blind, but the floor now appeared where the ceiling should’ve been, the walls were blurred, and the ceiling disappeared. My spouse had no idea what was going on and I was so shocked and scared that I couldn’t explain it. I stopped dead in my tracks, unable to move. I learned later I had double vision caused by inflammation of my optic nerve, optic neuritis.
This lasted a couple of days until the steroid treatments finally took hold.
Being diagnosed with multiple sclerosis right before Christmas made accessing timely treatment difficult. Experiencing my first “exacerbation” in the days before Christmas made it worse. The outpatient infusion and MS clinics were all closed until the first week of January. I spent Christmas Eve, Christmas Day, and Boxing Day shuttling myself to a hospital in the town north of me for IV treatments trying to slow down the progression of my symptoms.
I was blind and I was sleeping 16 hours a day. I had vertigo so bad I was throwing up twice or three times a day. I wanted to die and the last fucking thing on my mind was writing. Writing, the thing that had sustained me through every major life upheaval could not save me. I was blind and then I was sleeping.
MS left me with “Residual deficits”. I couldn’t read more than a paragraph or two at a time because I could not retain any information. (This still happens to me when I’m tired.) I couldn’t write because after 5 or 10 minutes I would be unable to remember how to type. I couldn’t follow the plot of a movie. (I still forget plots a lot. I remember more about how a movie made me feel than what actually happened.) I couldn’t write longhand because of tremors. I had problems with my brain processing speed and the inability to choose the correct words. For example, when I couldn’t find my mittens I asked my husband if he’d seen my pockets.
My life, for what it was, revolved around doctor’s appointments and sleeping. My neurologist ordered new and pretty aggressive treatments and I stopped barfing, eventually. I started being able to stay awake for more than two hours at a time. And finally, I was able to read short news stories online.
I was miserable in every way I could be miserable, so I did the only thing I could do under the circumstances. I got on the internet, found groups of people who also had MS, started a Blogspot and vented my rage and yelled my fears into the void every day.
Eventually, I found my new normal. Writing came back in fits and spurts. It’s only been in the past three years that I’ve been able to follow a narrative, read more than a page or two at a time, or put any serious energy into writing. The only way I could get on with my new life was to be patient and hope that nothing would get worse.
It has gotten worse, just not in ways that make it difficult to write.
