…and to drive the point home, my body has decided to make absolutely sure that I’m still aware that I have Myasthenia Gravis. In fact, it’s hit me hard enough over the past two weeks that this week we have an encore episode of Radio Free Charleston in its normal timeslot on The AIR (you can read about this episode from about a month ago HERE). I was just not up to recording a new show Monday.
Before I go any further, just in case some of you are new to PopCult, let me tell you a little bit about Myasthenia Gravis,.
“Myasthenia Gravis” is Latin/Greek for “Grave Muscle Weakness.” MG is an auto-immune disorder where antibodies attack the membranes around your nerve cells, blocking the signals from getting from your brain to your muscles. I have apparently had it since at least 2005, when it first manifested itself when my eyes crossed. It took eleven years to get a proper diagnosis, due to the mildness of my case and my lack of health insurance at the time.
Once diagnosed, Myasthenia Gravis is fairly easily treated with medications. It’s often called “The Snowflake Disease” because the symptoms vary so much from patient to patient. I am very fortunate that my case is extremely mild. In my case, it mainly effects my eyes and fingers. Some people get hit so hard by it that they have to go on disability because they have trouble walking, talking or breathing.
IIn my case it only affects my eyes and fingers, and as recently as three months ago, I thought there was a chance that I might be in remission. I was diagnosed and have been under treatment since 2016, but I’ve had it since at least 2005. My neurologist believes that it should start fading after time. There are good days and bad days, and really from November of last year to Mid-March of this year, I had a long string of really good days.
But things change. Temperatures change. High temps are my Kryptonite, and the last few of weeks have been rough. Now, I still consider myself very lucky. A “bad day” for me might be an incredibly good day for someone else with MG. When I’m having a bad day, aside from some double vision and finger weakness, I just have a general lack of energy, a bit of a physical depression, as it were. Mentally I’m fine, but it’s just a slog to get started doing things.
Even typing this with a few wonky fingers on my right hand is a bit of an annoyance.
However, it’s still good that my “bad days” only require me to take it easy and avoid stress. So that’s why RFC is taking a week off.
Since June is Myasthenia Gravis Awareness Month, and this year I have this big reminder, I’ll just repeat some of things I’ve written about it in the past, in case you’re considering acquiring a chronic disease with a long and hard to spell name for yourself some day.
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 over a dozen 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. It looks like, for the foreseeable future, Radio Free Charleston will remain a radio show with an annual video episode.
It’s not a good idea for me to 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 (Actually it’s not that bad anymore. Now time spent in the heat just saps my energy for the next few days). I did record some band outdoors last year, but I paid for it. Lucky for fans of the show, I am probably stupid enough to try it again, but maybe not in the summer.
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.
One other major drawback is that the treatment for MG is to medically suppress your immune system, which is no fun in the middle of a pandemic. That’s why I’m still wearing a mask in public and being very, very selective where I go and where Mel and I travel. It’s also why, when I hear people whining about mask and vaccine mandates, I can’t help but think what selfish jerkoffs they are.
For me, at the moment, I just have some bad days in the summer. Heat sucks, and when I’m in it too long, my energy is drained. I’m still extremely lucky that my case is so mild. This week’s Monday Morning Art is a pencil drawing that, six years ago, I would not have been able to produce. I could not hold a pencil. Even with that, it was a bit of a compromise. The reason it’s a pencil drawing is that I’m taking some time away from painting because I’m not happy with my lack of brush control.
Anyway, that’s why RFC is a rerun this week. You should still expect fresh content every day here in PopCult. Wednesday the plan is to post my review of the Alban Arts Center production of Fairview, and we’ll have new radio later in the week on The AIR. I’ll be back with a full three-hour show next week.