Allow me to apologize in advance for the contents of this essay. Quite simply, I’m fed up with multiple sclerosis and everything that has to do with multiple sclerosis. Those expecting to find any form of eloquence, wisdom, inspiration, or other redeeming qualities in these words will probably be sorely disappointed. Like a bulimic who just polished off a giant platter of lasagna, I’m feeling the need to purge and I have a hunch the results won’t be pretty. What follows promises to be more of a free-form rant than well-constructed discourse. I can’t guarantee any kind of narrative flow or grammatical cohesion, much less literary flourish or clever turn of phrase. No, instead I’m just gonna let it rip, an unadulterated regurgitation of everything about MS that’s been stuck in my craw these last few months. This may not be for the faint of heart, as I just might wander into some very uncomfortable territory. Okay, you’ve been warned; now’s the time to either buckle up or head for the exits.
MULTIPLE SCLEROSIS SUCKS!!! I hate this fracking disease. I hate what it’s doing to me, I hate what it’s doing to my MS friends, I hate what it’s doing to those who love or even barely put up with me. I hate the creeping paralysis, I hate the spasticity, I hate the pain, I hate the spasms, and I hate the unrelenting, soul crushing march of constant progression. I hate the slow, systematic dismantling of the life I used to know, I hate the steady erosion of everything I once thought of as “normal”, I hate the constant flow of indignities large and small handed out by the disease. I hate the word “multiple”, and I hate the word “sclerosis”.
I’m sick of being sick, and I’m sick of being sick of being sick. I’m tired of being tired, and I’m tired of being tired of being tired. I’m aghast at the fact that the balance between body parts that work and body parts that don’t work is starting to tip heavily in the favor of “don’t work”, like a sinking ship rearing up as it gets ready to make its fateful plunge. The list of things I can’t do are starting to outnumber the list of things I can do, despite the constant physical and mental adjustments and gyrations that I make trying to contort my life to fit within the ever constricting boundaries imposed by this hellacious disease. I find it impossible to ever get used to having this curse; at least three times a day I find myself shocked at my predicament, barely able to fathom that this is actually my life.
As of this writing I can barely dress myself, can’t cut my own food, can take but one or two hideously painful and treacherous steps. Horrifyingly, these steps are accompanied by a gruesome symphony of crunching and cracking sounds as my hip bones perpetually deteriorate, gut wrenching noises so loud that they can be heard across a large room, all courtesy a tortuously painful degenerative bone condition that has attacked my hips and shoulders that was brought on by IV steroids originally intended to help curb this monster. I’m only able to sleep in one and a half or two-hour spurts because of the intense pain in my hips and shoulders, and on most days I barely have the stamina to spend more than three or four hours at a time out of bed. My right arm is emaciated and most often bent at the elbow due to spasticity, my right leg as weak as a noodle. The left side that I’ve come so much to depend on is well on its way to failing, the thought of which bores a hole through my very being. And then there are the “bowel and bladder issues” that I share with so many other MSers. Such polite terminology for the fact that we can barely crap and can’t stop peeing. And despite this litany of dysfunction, I know that I’m still one of the lucky ones, as so many with this scourge are in far worse shape than I.
I’m fed up with well-meaning folks uttering some of the stupidest things I’ve ever heard in an attempt to make themselves and me feel better. Upon learning of just why it is that the right side of my body is a shriveled mess and my ass is stuck in a wheelchair, one woman cheerily informed me that her best friend’s husband is completely bedridden due to progressive multiple sclerosis, but that he is just about the happiest person she knows. I just sat there smiling and nodding my head, while on the inside wishing that a rogue chimpanzee would suddenly materialize and eat her face. Her best friend’s bedridden husband is just about the happiest person she knows? A man is likely totally paralyzed, completely incontinent, and probably has to use a feeding tube for nourishment? And this poor soul is just about the happiest person she knows? Who are the rest of her friends, professional mourners? Remind me never to accept an invitation to a dinner party at her place.
I’m angry that the most insidious and destructive form of the disease, progressive multiple sclerosis, the form I suffer from, is kept hidden from public view like a Victorian era mentally deficient child kept locked in an attic. Courtesy the mainstream media and the multiple sclerosis societies, the public never sees the ravaged bodies and mangled lives of people hit hardest by the disease. Instead, the face of MS belongs to celebrities and those patients left mostly unscathed by the illness. There’s even a TV commercial for an MS drug, Tecfidera, that portrays the disease as quite literally something of a carnival. Funny how those celebrities with MS whose disease takes a turn for the worse fall from public view, isn’t it? Where are you, Terry Garr?
Progressive multiple sclerosis has made me envious and prone to jealousy, not only of healthy people but even of people with other illnesses. I’ll confess that this even includes people suffering from the relapsing remitting form of the disease, even though I know that RRMS can be its own particular form of hell and can eventually lead to progressive MS. But just the idea of a remission, a break from the never ending grind of watching myself slowly disappear seems absolutely heavenly. At this point I think I’d give up all the remaining years of my life for just a week of normalcy. Hell, maybe even just an hour. Sixty minutes to go for a walk, to run and jump and dance and button my shirt and tie my shoe and hug my wife and – gasp – drive a car! Yeah, sign me up. That would be one heck of an hour.
Along those same lines, here’s an even more disturbing confession. In ruminating through mental lists of diseases that might be worse than progressive MS (leprosy, for instance), I sometimes find myself thinking that cancer would be preferable to this creeping paralysis. I know, heresy. But as undeniably horrible as is cancer, at least it’s a disease that ultimately and in relatively short order comes to some sort of conclusion. Yes, I’m fully aware that the disease puts its victims through living hell, and that cancer treatments often seem worse than the disease itself, but at least there are treatments. And at the end of those treatments patients either beat the disease and become survivors who can then begin to reassemble the shards of their life, or they die. Progressive MS doesn’t have the good manners to finish off its victims, instead leaving its least fortunate sufferers consigned to live out their years as fully conscious brains trapped inside prisons of completely useless flesh and bone. The stuff of horror movies, a fate far worse than death as far as I’m concerned. Progressive MS has exorcised me of any fear of death. In fact, given the aforementioned almost unthinkable but quite possible outcome, on many days I’m far more afraid of living than dying.
I’m aware that to many the above words may seem shocking and wrongheaded, but there’s a reason that MS was second only to cancer among the ills suffered by the patients that the infamous Dr. Kevorkian helped end their lives. Okay, hell, now that I’ve stuck my toe into these murky waters I might as well dive all the way in and speak about what goes largely unspoken, at least to those outside of the progressive MS club. Any number of studies suggest that suicide be listed among the consequences of multiple sclerosis, since so many late stage MSers decide to take matters into their own hands. In my many conversations with other people with progressive MS, I’ve found that most have formulated some sort of escape plan, some in only vague terms but others down to the last detail.
Anybody who would condemn folks for having such thoughts need to keenly consider the gaping abyss people with advancing progressive MS stare into on a daily basis as their thus far untreatable disease drags them ever forward towards the dark at the end of the tunnel. The relief expressed at finally being able to give voice to such taboo thoughts is just about universal among those I’ve communicated with, and is cathartic in its own right. Almost never shared with outsiders, most of the people who have related their thoughts and plans with me find them not self-defeating but rather self-empowering, bracing them to suck it up and fight on secure in the knowledge that if the fight becomes just too brutal and the climb to steep they’ve given themselves permission to call it a life. And in that there is no shame.
Let me assure all concerned that I’m not suicidal. I’m too damned angry to be suicidal. I’ve so far taken all of the wallops that this disease has meted out and found ways to fight back, and though I’m afraid I’ve not managed to land many blows on my disease itself, I take comfort in the knowledge that I may have in some tiny way helped a few of my fellow travelers on this torturous path to better navigate it by sharing the load even as I unburden myself on these pages. One of my oldest friends long ago described me as the most optimistic pessimist he’d ever met. I guess it’s this odd emotional mix that helps keep me going, half expecting that this hair-raising downward trajectory that has me in its grip will ultimately turn out to be a ski jump, and in the end the momentum gathered during this freefall will be transformed into escape velocity, allowing me to soar higher than I ever imagined.
Yeah, wishful thinking perhaps, but on the day of my diagnosis I vowed that if this disease was going to bring me down I was going to go down with all guns blazing, fists bloodied and mouth spewing venom. And should this descent turn out not to be the launchpad of my fantasies, if I ever do decide to pull the ripcord, let that act not be viewed as defeat but rather a final kick to the nuts of the monster. Stay strong, my friends; together we may not beat this horror, but we’ll damn well keep on trying.
This article was originally published on Marc’s website on 02/10/16 and is being featured on MultipleSclerosis.net with his permission.