Posts Tagged ‘life’

Consulting with my care team about my health.

This has been a conversation long in the making, and I’ve thought about it for a long time now.

For those of you who don’t know, I have nocturnal, non-convulsive epilepsy. I have been able to keep my driver’s license as long as I didn’t drive at night, because for the longest time with the exception of one seizure (considered a “one-off” by my care team), I only had seizures at night, so it was safe for me to drive during the day… even though I couldn’t bring myself to get behind the wheel of a car after the first seizure that I had in April of 2019. It was literally as I was preparing to get back into bed after using the restroom at around two in the morning. For a few years, almost until present day, this was something that I was comfortable with — well, not the actual driving part — because the timing of my seizures was fairly predictable, always at night. Sometimes I slept through them. Other times, I’d wake up during one. I could convey to someone else that I was having a seizure even though speaking was difficult, and I rode through feeling like my brain was being shocked and an egg that was being smashed against hot concrete as hard as it could be thrown by thinking of my children. They were my bright spots in the midst of all of this, and thoughts of them helped keep me grounded until the seizure finally ended minutes later (“forever”, heh).

Recently, I began to have seizures earlier in the day. I also became completely apraxic during them, unable to speak at all, and some seizures caused me to drop to the floor in the midst of them (they’re still non-convulsive, I would just literally drop to the floor if I was in a standing position). I still retain the ability to type and write, even though that is incredibly difficult. Auras have gotten much shorter, which means that if I were to drive I would not have enough time to pull off of the road and ride through one as it began. A lot of them cause me to “blank out” in the middle of them, and if you’re speaking to me I will not get the full gist of what you are saying because words will blank out… either one or several. I kept, and am keeping, my care team abreast of all of these developments. I was, and am, at the border of having to relinquish my driver’s license, which I’ve had since I was a teenager. But I decided to make that decision for myself because getting behind the wheel of a car causes me significant anxiety (I start recalling previous seizures and worrying that if I do drive, even if it is this one time, I will have a seizure behind the wheel… as I put it to a well-meaning relative, “I don’t want to put this into a light pole”). I made the decision to relinquish my driver’s license because I have a physical condition that makes operating a motor vehicle unsafe, and I do not see this ever being something that will simply… go away and stop. In the interim, I have been using Lyft — I am amenable to using Uber if it is better though, but my experiences with Lyft have been good — to transport myself places. I did this when it was still a thought to relinquish my driver’s license, something not committed to.

To me, this feels like the “end of an era”, and in that regard it does feel a bit sad. I did have a few well-meaning relatives who wanted me to hang onto my license for six months to a year “to see if things got better”, but as I continued to write about my seizures online, they realized that things would not get better. (And for the record, I was not epileptic at all when I got my driver’s license.) It’s a bit sad to realize that driving is something that I will never do again, but I also feel content with the decision to voluntarily relinquish my driver’s license because I realize that it is no longer safe for me to drive, the idea of it causes me significant anxiety, I have other ways to get where I need to go, and I am doing what is best for me and those who I love. I am at peace with this aspect of my health, as I continue to take medication for it (originally the maximal dose of Trokendi, now nearly the maximal dose of Gabapentin). I intend on switching my neurologist to one in this city for an easier commute to get on some quick-acting medication that will help stop a seizure in its tracks… and no, not even then will I feel comfortable or safe behind the wheel.

It is truly the end of an era, and I am going to continue to do what is best for me and those who I love.

I do not intend to drive again, even if in two years’ time I could theoretically retest depending on my health.

This was one of the case counts for my state.

Meanwhile, my state governor continues to push “personal responsibility” in not requiring (or even allowing) businesses and schools to impose a mask mandate or require the COVID-19 vaccine, even for elementary schools where the entire student populace is under twelve years of age and can’t get vaccinated. This state is seriously going to turn into The Stand at some point, probably sooner rather than later. If we don’t spike with the most confirmed diagnoses in the entire country at some point, I am honestly going to be surprised.

Some memories that I have of my mother…

Content warning: some of these may be distressful for people to read. You’ve been warned.

· being held down on the toilet as a small child, as I was screaming, to the point that my mother dug her nails into my skin and left marks where she had done so (marks that stayed after she was done and had to heal)

· her turning the television set off in the living room by ripping the cables from the wall, grounding me from going outside, turning the lights off in the kitchen, and crying in her bedroom to the point that she was screaming because I continued to struggle with the conventional grip of a pencil and continued to use “rock grip”… I eventually did learn how to write correctly, but a lot of that took longer than it should because of the trauma of this, and my mom’s over-enthusiastic one or two attempts to get me to learn to write normally

· telling me to my face while I was a child that I was the reason she wanted no more children

· always being told that I was bad, or how bad I was, when all of it was age-appropriate behavior

· never, not even once, being told how good my behavior was at any point in time, even when I tried

· not being interacted with beyond what she had to do with me, making it clear that she did not actually want a child and wanted to do no more than the bare minimum parenting while she kept the house clean

· not being shown affection as a child at any point that I could remember

When I say that I am extremely interested in, and motivated by, forgetting about my mother, I mean it.

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