April 26, 2019
It’s about time for another Myasthenia Gravis update.
As longtime PopCult readers may remember, about three years ago I wrote about being diagnosed with Myasthenia Gravis. That’s an auto-immune disease where a person’s immune system attacks the membranes that transmit nerve signals to their muscles, leaving them in a weakened state.
I am very lucky. I have an extremely mild case. The disease only seems to attack the muscles in my fingers, eyes and part of my feet. Other people who get this disease aren’t so lucky, as it can target any muscles in the body, including those used for talking, swallowing, walking and breathing.
While I am indeed very lucky to have such a mild case of Myasthenia Gravis, the very mildness of it made it difficult to diagnose. It was over eleven years between the time of the first appearance of severe symptoms until it was diagnosed. I had mentally prepared myself for it to be something much, much worse, and I never lose sight of the fact that I am leading a charmed life.
I had convinced myself that I was in the early stages of ALS, or Lou Gehrig’s Disease.
With MG, the antibodies in your bloodstream seek out and destroy the very part of your body that is used to transmit nerve signals. It’s not known why this happens, nor is it known why it targets every patient in a different manner.
We do know, as shown in the diagram to the left, that some of the antibodies look like tiny Scrubbing Bubbles.
Living with Myasthenia Gravis has caused me to make some major changes in my life. Before I started taking a large amount of medicine each day to curtail the disease, I had some pretty remarkable sleep habits. I could stay awake, and be productive and function at my top level for twenty hours, and then get fully-rested with four or five hours of sleep.
Those days are over. Now that I’m taking around twenty pills a day for various reasons I find that I start to peter out after being awake twelve or fourteen hours, and I need at least eight hours of sleep. I have been reduced to having the sleep cycle of a normal human, and it’s not fun. I can’t stay up into the wee hours and work anymore. I also can’t go out and support local bands three or four times a week like I used to. I’m lucky to make it out three or four times a year now.
It is fun having the use of my hands again. But it’s been very difficult to find a way to bring back the Radio Free Charleston video show, since we record so many bands on location in local bars, and the bands tend not to start early enough for me to stay awake. I’m trying to figure out a way to adjust my schedule so I can do some more location shoots, but most of the time the flesh is just too weak.
I also can’t shoot outdoor shows in the daytime. Extreme heat exacerbates the symptoms of MG, so a couple of hours in the heat leaves me with crossed eyes and flippers for hands.
Until I can gain access to a studio, like I had with LiveMix, back in the day, RFC will remain largely a radio program, not that there’s anything wrong with that.
The most insidious thing about Myasthenia Gravis is the way it hits you. It makes your body work the opposite of how it does with exercise in a normal person. The more you use a muscle, with MG, the weaker it gets.
Last weekend when I was drawing and painting Monday Morning Art, I seemed to be doing okay, but Sunday evening my fingers were starting to become useless. I’m not going to give up my art, but I’m either going to have to space it out, or take some extra pills to get me through it. I’ve been working primarily with digital art for the past fifteen years or so, but I really want to star making real-world, tangible pieces again.
Oddly enough, typing doesn’t seem to bother me that much. My theory is that, while I can type very fast, I never learned the proper way of doing it, and in all the years that I had hands that were essentially paralyzed, I figured out a way to type without using too many finger muscles. As seen in the graphic at left, apparently MG can also let you wave at giant germ-like things when you’re being X-rayed. That could be a sign that I’m having a hard time finding Myasthenia Gravis graphics that I haven’t used yet.
Sunlight is another problem . I naturally squint, but squinting uses eye muscles, which, when weakened, can’t keep my eyes pointed in the right directions. Having my MG flare up on the drive down to Toylanta last month was not at all pleasant, and I’m lucky that Mrs. PopCulteer is such a road warrior and can handle the driving. Eye fatigue is another reason that I haven’t been posting as many book reviews of late, but that will end soon, as I have some free time coming up and hope to dig into a stack of really meaty graphic novels.
I am discovering new limitations and new ways to work around those limitations every day. Even three years after being diagnosed, I have a lot to learn. There are good days and bad days, and I’m learning to cope with the bad days better, and appreciate the good days more.
But I’m doing okay. Life is good.
STUFF TO DO
Speaking of life being good, here’s some good stuff you can get into this weekend…
And that’s this week’s PopCulteer. Thanks for reading and keep checking back for fresh content every day.