Saturday, November 12th, 2016 – 10:35 am
(Thursday, November 10th 2016 – 1:07 pm – Kaiser Permanente Sunnyside Neurology)
“Your brain is severely malfunctioning, but we don’t know why. Our team agrees you could very possibly have Conversion Disorder, which might partially respond to therapy over a year or more. If so, you could regain some functionality, like walking without a cane again. But it is admittedly a diagnosis of exclusion. We could be wrong. There is no conclusive test for it. If the cause of your brain malfunctioning is organic and we simply have not isolated it yet, we’ll eventually know because you will not get better, but worse.”
For better or worst. In sickness and hell. Until I say, “I don’t.” My modest history of getting better shall unimpress us, I promise this, “Medical practitioner” or maybe practicer. Practicing medicine on me again, you practical joker?
“Oh. Sorry. Yeah. Great. See you in six months, doc. Hopefully.”
The neurologist was encouraged that I was not defensive or on the offensive or hitting him with my cane as someone rudely suggested when they wrote my blog a few months ago. Jokingly, of course, and planned out in great detail, by a different man, once again.
The fact I am willing to give their diagnosis a chance is a good sign. He says. If they are correct about my having Conversion Disorder, my willingness to work with the therapies is critical for me to respond to them. He insists. If their diagnosis is even correct.
He mentioned that the leading expert in NYC says their understanding of the disease is in its infancy.
Lovely pearls to hear strung in that order. Our understanding. Your disease. Infancy. I might buy another cane today. I may invent a martial art based solely on using two canes while sitting down. And I will return. If I remember.
With all their infant understanding and baby steps and my diaper shitting terror and childlike faith and all our combined error and wonder and confusion and delusion at whatever the hell or heck is going on here… he admitted that the leading expert in the world says I still have only a forty percent chance that I will recover fully. And it could take anywhere from months to years.
He knows I will try my best to give their diagnosis and treatment a chance, but if I get measurably worse, especially cognitively, I am expanding my search parameters. If I forget how to tie my name or spell my shoes or figure out how to drive a pizza to go pick up an Uber, then I am paying out of pocket to get another opinion outside of Kaiser. He said that is understandable.
We finally did physical tests to create benchmarks or baselines, as I requested long ago. Similarly, he agreed we should schedule a neuropsychological evaluation, again at my request. This is to create a mental baseline, in case I develop further memory loss, confusion or delusions. That way, we will have something to compare to and then try to confirm in a few months if I am better, worse or the same.
I woke up this morning like most mornings in many months, posing as the two worst Seven Dwarves rejects, Shaky and Nauseous. I start each day by taking a few moments to determine just how bad or different I am doing, so I can prepare. Each day is different and sometimes, so am I.
Can I make it to the bathroom without the cane or will I immediately fall over? Can I pick up my pill container or phone without dropping them? How am I today, cognitively? Or should I say, who?
The one I used to be is drifting further from me. I missed and feared and respected him, but I do not think we will cross paths again.
Crossed wires are paving a new pathway, off road, offline and out of control. I am stuck on a cursed carnival haunted house ride that is speeding up again and I can’t hide within. It won’t stop manually or with archaic standards. I see the falling facades, the faces filling and fouling, concerned crowd scowling, growing and growling, gathering with silent prayers and gossipping willy nilly and loving and willing ill of me.
I’m the NASCAR crash you paid to see.
My rides must eventually slink to a stop and I will walk away, on full display, unscathed.
I feel so sick. I always feel like throwing up and have a strict aversion to food for the first half of the day. Brain damage. With inexplicable changes in circadian cycles and with the aid of medicine, I almost always develop an appetite by nighttime. I am urged by the doctors to eat much during these time windows, as I am underweight and undernourished. The moon comes out and I feast. The nausea and howling regret will fitfully and faithfully slip back to my side by sunrise. I stopped carrying around Tupperware puke bowls by week two of… this. This. That was also the last week I worked a job and drove a car.
Seventeen weeks ago.
I am twitching and convulsing far worse this morning than average. Yesterday was a very good day and today is a very, very bad day and nobody warned me about the lack of any in-between days. Seizing and stuttering and stumbling and swearing the most in many months.
It took a long while to calm my hands enough to type… this.
Time to keep moving.
Time to try.