It had been a great series of days. The Run For The Zoo 5K was checked off on my bucket list. I made my goal weight, only 10 months after my bariatric surgery. Finishing the entire first draft of my novel Inheritance was just about done. I felt as if I was riding a great wave of momentum.
Which, of course, is when my “condition” chose to rear its ugly, unwelcome head.
Still No Cure For Epilepsy
8 AM yesterday I was chatting with my father about our plans for Mother’s Day. At 9 AM I was collaborating with the Ash Falls team about upcoming releases. All seemed right with the world.
At 10 AM, my left arm started twitching. I stopped what I was doing (As I always do anytime my body starts doing something unusual), and told Lor I was going to need my magnet.
My what, you ask? Those of us with a Vagus Nerve Stimulator implanted in our chest can run a kitchen magnet over the site of the implant to trigger it, hoping to forestall an oncoming seizure.
Unfortunately, we were too late.
By the time Lor got back, it was a full-blown seizure. A bad one. Seizures, as you may or may not know, come in varieties. Normally my seizures involve lapses in consciousness, called absence seizures. My eyes are open, I remain upright, I can even be steered around, but no higher brain function is present. I can’t communicate or make self-directed movements. As they say, “the lights are on, but no one is home.”
Afterward, I rarely can remember what has occurred. This is why having a full-time caregiver is a necessity – the number of ways you can injure yourself during a seizure is mind boggling.
And yesterday’s interruption was no absence seizure.
The Involuntary Workout
By the time Lor was back from the kitchen, it was too late to hold off the seizure.
She gave me a swipe anyway, hoping to shorten its length. I was in no position to say thanks. My head was tilted to the left, and I could feel a trickle of drool running out over my lip and down my face. Most alarmingly, my left arm was now extended straight in front of me, solid as a rock, the muscles in my forearms visibly jumping and twitching. It felt like the most intense isometric exercise I had ever performed.
See, the “felt like” part is what really freaked me out. Normally, I am not conscious of my seizures. While my seizures are taking place and freaking out everyone around me, my mind has usually been turned off. Not yesterday. Yesterday, I got to sit and watch as my body just took off without me.
In subjective time, it felt like I was trapped in that position for hours. In “real time”, it was all over in less than 5 minutes. But 5 minutes of non-stop, full-blown muscular contraction is enough to fatigue just about anyone. There is a reason that HIIT training only goes for intervals of 30 to 60 seconds with rest breaks in between. Anything more is not normally possible.
At least, not while there is someone at the controls.
The Calm After The Storm
Once we thought that the storm had passed, Lor directed me to the shower. She got to babysit me and direct me to use soap, wash everything, brush my teeth, etc. Why? Because after a seizure I don’t always remember, and will sometimes stand under the water until she turns it off.
She then got the lovely task of taking my clothing and the seat cushion I had been sitting on to the washer. Oh, did I forget to mention that “involuntary muscular movements” frequently means incontinence as well?
Next time you see a caregiver for a disabled person, give them a hug. Take them to lunch. Buy them a fruit basket. If you haven’t been one, you have no idea what a miserable, thankless job it can be. How Lor does it with a smile I will never know.
The rest of my day – originally slated for production of fiction – got spent napping and staring at the television. Seizures leave me in an addled state for much longer than it takes me to recover the ability to speak. Lor started watching the second episode in a series we have been watching, and after the first two minutes, I made her stop. Not only was I not remembering the first episode, I was confusing the series (Amazon Prime’s Bosch, highly recommended) with the movie Mullholland Drive. I probably should’ve stuck with cartoons.
An entire day of productivity, flushed down the drain thanks to misfiring brain cells.
How Raw is Too Raw?
I get asked frequently why I write about the things I do. Isn’t it uncomfortable, just laying it all out there for the whole world to see?
Well, yes. It bothers me to know that the audience of Misdirected knows that I am not always in control of my own brain. Just like it bothered me to confess that my eating was so out of control that I had topped 300 pounds.
But, that is sort of the point. The longer things like Obesity and Epilepsy remain forbidden subjects, too embarrassing to talk about, the longer it will take us to address them.
I have hope for those of us with these forbidden conditions and disabilities. Once upon a time, breast cancer was a subject no one talked about. Today it is a trendy subject. Pink ribbons blossom everywhere to fund research and support for those suffering from the disease. It is possible to drag these things out into the light and begin working on them.
But only if someone starts talking about these conditions first.
As for me? Back to the gym today. I refuse to fall back into gloom and despondency just because I have had a setback. I may only feel safe doing cardio today, but, by God, I am going to do what I can.
As for you? Hug your Mom on Mother’s Day this Sunday. Do something nice for a caregiver. Drop a buck into the pot at the Epilepsy Foundation or the Obesity Action Coalition or the National Fibromyalgia Association and support those who are suffering from one of these “hidden” diseases.
And I will just keep on dragging this stuff out into the light, and make people a little uncomfortable when they read about it.
Raw Like Yesterday’s Road Rash,