… and I’m actually really happy about that. Let me explain.
April 22, 2016
In 2005, several months before I began writing PopCult, my eyes suddenly crossed. It scared the hell out of me and for three months I wore an eyepatch while my doctors tried to figure out what had caused it to happen. This was when I was acting as a caregiver for my mother after she suffered a massive stroke in 1997 that left her bedridden. While taking care of her, I fell into a common trap for caregivers, I failed to take care of myself.
I was not paying attention to what I ate and my weight ballooned. It was discovered that I was diabetic. The trouble with my eyes was believed to be a case of diabetic neuropathy. I went on a strict diet and dropped 90 pounds in six months. My Opthamologist, Dr. Muhib Tarakji, performed a procedure where botox was injected into the muscles that pulled my eyes inward,weakening them so that my eyes uncrossed and everything cleared up. In fact, this particular procedure was completed about two weeks before I began writing this blog. I’d alluded to it before in PopCult, but I never went into great detail.
Generally I like to keep PopCult postive, light-hearted and on-topic, but since what’s been happening with me has had some affect on PopCult and Radio Free Charleston I thought I’d get way more personal than I usually do in this space. One reason I’ve fallen behind in posting videos of late is that I’ve had to make time for doctor’s appointments and testing. I’m hoping to get back on track and start being insanely prolific again next week, but it might take a bit longer. I’ll get to that in a moment.
While I felt triumphant in conquering diabetes and getting healthy back in 2005, I was not diligent enough on that front. My mother passed away in 2006, and I prepared to begin what I’d hoped would be an exciting new chapter in my life. I revived Radio Free Charleston as a video show and re-entered the workforce after more than a decade in caregiver limbo. However, later in the year my aunt, Stella Warden, asked for my help in taking care of my uncle, Gene, who seemed to be nearing the end of his life.
Finding myself in charge of an elderly person’s healthcare once again so soon after my mother’s death was not in my plan, but I could never say “no” to my aunt, and after taking over Gene’s medical care I realized that he was severely over-medicated. I got him off half of the prescriptions he was taking, and within a month he was in great health and had even started driving again.
Then my aunt took ill and died of lung cancer three months later. I had promised her that I would look after Gene, and after her death he went into a downward spiral of depression and began failing physically. I was once again a full-time caregiver. And it was very stressful. Gene was not the most pleasant person to spend time around, and certain members of his family created more stress than any person should ever have to endure. For nearly seven years I was responsible for keeping my uncle healthy, or at least comfortable.
I once again began neglecting my health. Not having any insurance made this as an unfortunate necessity. I fell into old, bad, eating habits and slowly gained back much of the weight that I’d lost. Worse yet was the fact that I was oblivious to this. I thought I was fine.
In 2008 I began noticing weakness in my left hand. I could no longer shoot pool. A couple of years after that I could no longer attempt to play guitar. I figured that it was just diabetic neuropathy and adapted. Neuropathy is difficult to reverse, and most of the time is permanent. My right hand would also weaken over time and I lived with slight double vision as my eyes re-crossed, but ever-so-slightly this tme. I became quite adept at hiding this. I never missed a beat while producing PopCult and Radio Free Charleston even though I eventually got to the point that I couldn’t open a water bottle. Only my closest circle of friends knew some of what I was dealing with.
Gene died in August, 2013, and I vowed never to get sucked into acting as a caregiver again. I don’t regret doing it, but after twenty years of putting my own goals and dreams on the backburner, I felt I’d earned the right to get on with my life.
In 2014 I finally married the love of my life, Melanie Larch, in Chicago. I was exhausted for most of that trip, but blamed it on the summer heatwave. Being married to Mel, aside from being the greatest thing that I’ve ever done, also meant that I would be able to get on her insurance. Still, I put off going to the doctor until last November.
I suppose that part of the delay was fear and trepidation on my part. I’d been intimately involved in end-of-life care for four people since 2003 and in the back of my mind the thought that my physical problems were something much worse than diabetic neuropathy was ever-present. I had nagging feelings that I might be in the early stages of MS or ALS. I kept these thoughts to myself, not even mentioning them to my wife. It was sort of an educated form of denial, where I knew too-well the worst of what could be going wrong, but didn’t want to deal with it. I mentioned to friends how much I was enjoying being able to travel with Mel for the first time in my life, and would say that I thought I might be able to do so for another five years or so, but I never elaborated on why I felt that way.
For someone who does his best to be upbeat, positive and optimistic, living with the thought of wasting away with a lingering, debilitating illness cast a dark cloud over my existence. My life was going too good for me to confront what I’d secretly accepted as a wretched inevitability.
I started going to Dr. Nazia Ahmed and she has been a godsend in terms of thoroughly checking out all of my various medical issues. Earlier this year I wrote about how I’d been dieting and taking better care of myself. She’s why. After we addressed my diabetic issues and I got on the right track with that, she turned her attention to my eyesight and hand weakness. I made appointments to return to Dr. Tarakji and consult with Dr. Glenn Goldfarb, a neurologist who took care of my parents and uncle. I saw them on consecutive days last week.
Dr. Tarakji gave me a thorough exam and noticed the double vision had returned. When I mentioned my hand weakness, he immediately suggested that I go to a neurologist to be checked for myasthenia gravis, something I hadn’t even considered before. I was due to see Dr. Goldfarb the next day so Dr. Tarakji sent him a note and Dr. Goldfarb performed the modified EMG test to detect myasthenia gravis.
Dr. Goldfarb said that I had a textbook myasthenia gravis EMG, but had to do bloodwork to confirm it. This week the bloodwork came back from the Mayo Clinic, and I began taking medicine to treat this condition Tuesday night.
And that’s why I’m fairly well ecstatic that I have this condition, the name of which is Latin/Greek for “Grave Muscle Weakness.” Myasthenia gravis is an auto-immune disorder where my antibodies attack the membranes around my nerve cells, blocking the signals from getting from my brain to my muscles. I have apparently had it since at least 2005, when it first manifested itself as my eyes crossed. It turns out that the discovery of my diabetes was simply coincidental. Dr. Tarakji told me that I have no damage associated with diabetes, save for some tiny cataracts. A stress test last year showed that my heart is in perfect shape. While I am diabetic, I have apparently never suffered from diabetic neuropathy.
Myasthenia gravis is fairly easily treated with inexpensive medications. I started on the meds Tuesday. After the first pill I could make a fist with my left hand and extend my middle finger. That may not seem like a big deal to you, but I hadn’t been able to do that for five years. I wanted to run around showing everybody but the response was generally not positive. At some point over the next few days or weeks, my eyes should completely uncross. Which means that the new glasses I pick up Friday with a prism in one lens to correct my double vision will need to be redone again. That’s the kind of complication I will be happy to encounter.
With all the dark thoughts in the back of mind about how I might end up, I’d never considered that I may have had a condition that was rather simple to treat.
I’m finding it hilariously absurd that I am positively giddy about having an illness which strikes some people in such a severe manner that they have to go on disability. I have promoted benefit concerts for people who have been disabled by it. I had accepted never being able to play guitar, or crack open a bottle of water on my own again, and now it turns out that I could have had this cleared up eleven years ago if my diabetes hadn’t been discovered at the same time that this first manifested itself.
Still, Lou Gerhig can move over. I feel like the luckiest man on the face of the Earth. I don’t want to make a joke out of a very serious disorder that can be a life-wrecker for many of the people who suffer from it. I know and realize that I am a very lucky person.
In the (at least) eleven years that I have had this condition, which is usually hallmarked by severe weakness and fatigue,I have shot, edited and posted over five hundred videos to YouTube. I have created over a thousand pieces of digital art. I’ve written hundreds of magazine and newspaper articles and created almost 3,200 posts for this blog. And for much of that time I was also working as a caregiver.
Imagine what I could have accomplished if I hadn’t been “gravely weak.”
I am extremely lucky in that I seem to have an atypical form of myasthenia gravis, and have not experienced any breathing or swallowing difficulties or the droopy-eyelid syndrome that usually accompanies this disorder. This condition does hit some people like a ton of bricks, and as I learn more about it, I realize how lucky I am. We even have our own month (June) and ribbon (sort of a teal). Don’t be shocked if I write more about MG in the future.I’ve got it really easy compared to other people with myasthenia gravis, and I don’t mean to make light of a very serious disorder. It’s just that I’m so relieved that I don’t have something much worse.
Myasthenia gravis has no negative affect on life expectancy. The treatment is fairly simple, and I’m responding well to it. My case seems to be a mild one. Not having any really nasty neuological issue going on has lifted a huge weight off my shoulders and I’m ridiculously happy and upbeat, which is really saying something because my usual state is happy and upbeat anyway. I may become damned-near insufferable as a result.
However, I have to be realistic about my limitations. I have to let my body get used to the new medications I’m taking, and there are potential side-effects that I will likely have to deal with. I’m almost certainly going to need some physical therapy because some of my muscles have atrophied a bit. That’s going to be time-consuming. It’ll take work, but I will savor the challenge.
You might have noticed that there hasn’t been a new video episode of Radio Free Charleston or The RFC MINI SHOW since January. Those will return, but not until I’m able to devote time to producing them, and probably not on a weekly basis for a while.
I’m still having a blast producing radio shows for AIRadio, and I don’t intend to slow down on that front. You might get the occasional re-run if my meds decide to knock me for a loop some days, but I don’t expect that to happen too often. You might not see me at very many local functions in the coming weeks, but to be honest I’ve sort of pulled back from that since the first of the year. I’ve got to place a priority on my health for the time being. I hope my readers understand that.
I do not intend to slow down or cut back on PopCult. I’ve got a personal milestone coming up in about three weeks, and I will move Heaven and Earth to make that goal. I put together a long, comprehensive, “Stuff To Do” yesterday so that I could make this PopCulteer a single-topic. There’s always a ton of cool things happening here in Charleston, and I want you folks to get out and enjoy it all.
So that’s what’s been going on with me, your PopCulteer. I am now in a very good place. Dark clouds have been blown away from my horizon. For the first time in a long time I can honestly foresee a long and happy and healthy life for my wife and me. I intend to remain active in the local music scene for the long haul. As long as The Gazette-Mail will have me, I’ll continue to produce PopCult and you can look forward to lots more Radio Free Charleston on YouTube and AIRadio.
Life is good.
PopCult will get back to its normal nerdy-snarky self next week.