August 27th, 2016
It usually happens about once or twice a day, when I can no longer distract myself. Quite often, it is whilst walking down a long hallway or laying late at night on my back in bed. My racing mind begins to slow down just enough and I lose composure as I remember the fact I am having a seizure every twenty or so seconds. Or that it takes me many extra minutes to simply walk somewhere in my own house.
I get angry. I get choked up. I feel those stupid hot tears arriving unannounced. Even in the dark of the night, I know Amy could see me wiping them away, if she were awake. My brain screams out against the illusions of justice and injustice and chaos and order. I’m not yet fifty. This not how it was supposed to be. How dare… the universe?
The days are starting to blur together, since I have been too sick to drive or work. It is going on almost two months since I could do either. Today is slightly different than yesterday. It stands out simply because we are doing something new that will not happen again for some time. Amy took our bed frame out of storage this morning. For years, we had decided to put it away to allow our short Corgis to more easily jump on and off the bed without aggravating their breed’s tendency for hip dysplasia.
Even before the cane, I used to only be half helpful at these kind of household chores, but I am clearly less handy now. I get in the way easily. She knows this and without asking for any help, set it back up again today by herself. She ripped out the box springs, mattress and vacuumed. It looks like the Corgis and their hips are on their own again. It’s my turn to get in and out of the bed more easily and with less risk of injury.
I have written repeatedly that if my condition worsens, I will fall over soon. That was not entirely true. I have fallen over about four times in the last few months, but it was before I had to force myself to slow down. Each time so far, it was fortunately only when I first woke up and had yet forgotten that I am sick. I spent 47 years without constant vertigo and imbalance. Luckily, I have been able so far to steer and semi-control each of the falls back onto the bed. And then I remind myself to slow the hell down. And to grab the cane before getting up.
At best, we can probably expect a couple mildly amusing phone videos of the Corgis bouncing off of the side of the bed and onto the floor as they try to gauge this recently reinstated mattress height.
This is not a particularly bad day, but I am also not doing well at all. For maybe a week, it has felt like each day could be measured merely with a matter of slightly better or worse tremors and seizures than the day before.
Today is worse.
Amy stopped momentarily with the bed frame and talked me into trying to eat a second piece of dry toast. An hour later and I am still very nauseous and shaky. I have some writer friends coming over soon.
I just now a moment ago had maybe my fifth seizure in the last five hundred words. It lasted only a few seconds, but again messed up mid-sentence what I was trying to type.
As is sometimes the case, today’s nausea and shaking and seizures are connected to inexplicable waves of burning in my chest and stomach that then slowly and relentlessly lap like a poison into my arms and legs. I feel like a hot acid burns within me and my bones and nerves are itching and cannot be scratched. And the weakness spreads.
The itching and burning goes from my chest, down my right arm and into my hand. The cane protests and wobbles much more than yesterday. I start setting down the tip of the cane much further away, like a kickstand. Again. Sometimes it has to be closer. It is how I adjust to my new center of gravity each day.
Dammit. Another seizure. Each one is draining and leaves me gasping for breath.
I’m just tired. I only woke up a few hours ago and am already exhausted. I don’t think I will be funny or creative or inspirational today. I may have to fake it a little for the writers group.