I’m baaaaack! Due to circumstances beyond my control, it’s been quite a while since I posted anything to this blog. My long absence from the blogosphere (is there an uglier word in the English language?) was not due to alien abduction, time travel, or simple lack of interest, but rather because I was, in a word, sick. Sicker than normal, that is. So sick that I could barely get out of bed for about six weeks, feeling, as they say in the hallowed halls of medicine, horrendously yucky.
Turns out that my case of the horrendous yuckies was caused not so much by my mysterious and ever progressing neurologic crap, but rather an obstinate sinus infection and – mostly – my completely messed up endocrine system, which decided to go utterly out of whack. Take it from me; having an utterly out of whack endocrine system is definitely not more fun than a barrel of monkeys, or even one monkey with or without a barrel. After two rounds of antibiotics and much tinkering with my various endocrine meds, I’m finally feeling halfway human. Since there are strong suspicions that I may only be half human anyway, things are definitely looking up.
Speaking of looking up, my six weeks spent in bed doing my best impersonation of an area rug gave me plenty of time to do just that, look up and study the intricacies of the ceiling over my bed. Since that pastime got old pretty fast, instead I couldn’t help but start peering deep within my own brainpan, an activity that comes dangerously easy to me anyway, given my lifelong proclivity for introspection. While there are plenty of interesting nooks and crannies inside that creaky old noggin of mine, there are also all kinds of surplus flotsam and jetsam in there as well, along with some scary beasties that are better left undisturbed lest they wrap their tentacles around your naughty bits and begin taunting you with really bad impersonations of Ernest Borgnine in “Marty” – a wonderful movie which if you haven’t seen already I highly recommend you watch right this second (click here).
Also found stuffed in the neglected dusty and cobwebed steamer trunks of my mind were memories, lots and lots of memories of people, places, and things, some of which hadn’t seen the light of day in decades. It’s amazing how many seemingly trivial moments remain captured in crystal clarity in our heads long, long after they occurred. Some were a treat to revisit, others not so much. Nevertheless, all of this mental poking, prodding, and reflecting done during my enforced period of respite resulted in some observations on life with and without chronic illness, some of which I thought I’d share in an attempt to make my time spent infirm not a complete waste. Some of the these may be trite and/or unoriginal, others a bit more significant, but I think all are true. Do with them what you will, but please keep your Ernest Borgnine impersonations to yourself…
- Time flies even when you’re not having fun. I’ve been diagnosed with “atypical” MS for over 12 years, and have been dealing with various troubling symptoms for longer than that, during which time I’ve lost the use of the entire right side of my body and an increasing amount of my left, and still it feels like all those years went by in the blink of an eye. Time is every person’s most precious possession, and each passing moment diminishes our allotment of this priceless endowment, never to be recovered. Time spent wallowing and worried over things inconsequential is time indeed wasted, and in the grand scheme of things almost all circumstances and situations except the absolutely most dire turn out to be inconsequential. With few exceptions, lost loves give way to new romances, lost jobs to fresh opportunities, lost monies to refilled coffers. As long as a person is of sound mind and body the power to reshape their destiny is entirely theirs to command. Once recognized, past mistakes and self-destructive patterns can serve as illuminating roadmaps to a more fulfilling future. Not that the losses shouldn’t be felt, but letting those hurts linger and poison future moments, moments filled with endless possibility, amounts to time spent in a prison of one’s own making. Regrettably, a lesson I learned far too late in life. Another lesson I learned far too late in life is that trying to put your underpants on over your head is but one more terrible waste of time. Go figure.
- Judging people by their outward appearance is about as foolhardy as it gets, unless they are blood spattered and brandishing weapons. As I’ve previously recounted on these pages, at one point in my life I found myself an unwilling resident of the state of Florida, very much a stranger in a strange land. It seems I shared little by way of aesthetic sensibilities with most of the other residents of The Sunshine State, and for quite some time I felt extremely isolated. As I got to know people, though, most of whom looked and thought very differently than the people I was used to socializing with in New York or Boston, I came to realize that many of them were full of delightful surprises. One very burly and proudly blue-collar man, who at first glance would seem to be the antithesis of the artsy types I hung out with up north, turned out to be one of the most interesting and entertaining friends I’ve ever known. One thing I realized we shared early on was a taste for booze and bars, and on one of our first nights out on the town together, after downing a few, he confounded me by suddenly spouting by rote memory verse after verse of Rudyard Kipling poetry, recited with a heartfelt vigor that left me dazzled. “If you can make one heap of all your winnings, and risk it on one turn of pitch and toss, and lose and start again at your beginnings, and never breathe a word about your loss…”. During the rest of my Florida years we would have quite a few inebriated adventures together, and through them all I’m sure I learned more from him than him from me. I haven’t seen or spoken to my friend in at least 16 years. Denny, if you’re out there, thanks for the surprises and all the good times.
- On that note, it’s vitally important to let the people who brighten your world know just how much they mean to you. No need to get all gushy and maudlin, but acknowledging the good people now will save you regret later on. I had the good fortune of working closely with two of the most brilliant people I ever met, at a major audio and video production studio here in New York City. When I first received my MS diagnosis they were both visibly upset and tried to express their concern and sympathy as best they could, genuinely chagrined at the bad break I’d received. Well, 12 years later I’m still here and they’ve both since passed away, one with shocking suddenness and the other after a long illness. I never really expressed to either one how special I thought they were, at least not directly. We cry at funerals not for the departed but for ourselves, for everything left unsaid and for the part of us the lost take with them. I have an awful lot of phone calls I need to make.
- While we are still on the subject of people, although it is foolish to judge folks by their outward appearance, judging them by the company they keep can save you a whole lot of trouble. Birds of a feather, as they say. I once had a long-term relationship with a woman who, on paper, seemed almost perfect. She was extremely easy on the eyes, had an interesting, even noble profession, was possessed of a sharp mind and a keen sense of humor, owned two great dogs (a big plus in my book), and had wonderful parents. The only thing that bothered me about her from the outset was her friends. Though this may sound impolite, they all made my skin crawl and seemed to me on the whole to be a thoroughly distasteful bunch. The passage of time would confirm my instincts about pretty much the entire crew, and despite any initial illusions otherwise, my ex turned out to be a great fit among them. Of course, in retrospect, early on I chose to willfully ignore copious signs of this woman’s toxicity, for I was truly a fool for beauty. Unless extraordinarily motivated, people generally stay true to their nature and if you think that you are somehow going to change them you’re cruisin’ for a bruisin’… Years later I married a woman with a kind heart and genuinely good soul, beautiful both inside and out. I suppose the universe taught me a lesson I desperately needed to learn, and boy, I sure am glad I learned it.
- Chance plays a tremendous role in shaping the contours of a life, but there are key moments when decisions made or not made, or actions taken or not taken, can change the whole ballgame. How important it is to recognize those moments and in doing so bend the fates to your favor. As a young man I suffered greatly from HUMA (Head Up My Ass) syndrome, and lived my life with all the conviction of a fart in a windstorm, mindlessly rather than mindfully. Though I harbored grand dreams of fame and fortune, I spent far too much time dreaming rather than doing. I did manage to eventually find success in what many people consider a “glamour” industry – video and television production – but I always had gnawing within me the feeling that I was meant for other things. When my illness forced me to “retire” and eventually start this blog, I discovered a much truer me, a me that had been MIA for decades. Fear, I now realize, played a tremendously negative role in the direction of my life, fear of both success and failure, playing itself out in too many ways to count. Lying sick in bed this last month and a half I sifted through all of the chances missed and all of the roads not taken, almost all due to lapses in confidence, neurotic apprehensions, or sometimes simply the weight of inertia, and I was overwhelmed by the sheer magnitude of all of the collected “what if’s”, a latticework of paths left unexplored. Who knows if any of them any might have led to a place without MS? In a weird twist of fate my illness has resulted in some of my dreams finding realization, but geez, the price has been steep. I suppose such things don’t come cheap, though. Unless, of course, you’re a Kardashian.
Okay, with that I’ll leap off of my soapbox (as if I could even get on a soapbox, or leap). Thanks to all of you for taking the time to read Wheelchair Kamikaze, and for commenting, sending notes, and breathing life into this thing. You’ve given method to the madness of my getting sick, and for that I am eternally grateful. When they find a cure for this whole MS thing you’re all invited over to my place for a shindig that will leave my neighbors pissed off for years…
This article was originally published on Marc’s website on 09/02/15 and is being featured on MultipleSclerosis.net with his permission.