Of late, the MS has been giving me a pretty good a** whuppin’. It’s getting harder for me to stumble around my apartment, and I’m pretty close to making the decision to start using my wheelchair for indoor as well as outdoor mobility. Up until now, I’ve used the chair exclusively for my travels through the beehive of streets in New York, but now the uncomfortable realization is hitting that I also need it for excursions from the bedroom to the kitchen. It looks as if the progression of my disease is about to force me to crash through yet another psychological barrier.
During my first visit to an MS specialist, I remember the doctor going on about “stopping the progression of the disease”. I was new to the world of MS, my head was spinning with thoughts of “spinal lesions”, “lumbar punctures“, and “brain MRIs“, and I simply could not process what he was talking about. Progression? What the hell is progression? I have a little limp in my right leg, upsetting yes, but hardly the end of the world…
Well, now I’m all too well aware of the meaning of progression. In six years, that little limp has reached out and put a choke hold on much of the rest of my body, and try as I might, I just can’t seem to wriggle free. I could list a litany of my defective body parts, but what’s the point? It would most likely just need to be updated again next week. Each new day seems to bring with it a changing set of circumstances, and unfortunately, those changes don’t ever seem to be for the better.
To state the obvious, the problem with progressive neurologic disease is that it progresses. Little by little, you lose yourself to your illness. As great a toll as this progression takes on the physical body, the psychological impact of watching yourself whither away over weeks and months and years cannot be overstated. Back in the dark ages of my MS experience, I’d sit in the neurologist’s waiting room and see other patients in their wheelchairs and scooters, and thank the heavens that I was not one of them. Of course, I knew that they did not just one day materialize disabled, and that they had arrived at their current physical conditions incrementally, over time. I just couldn’t fathom that I would follow the same road. I’d look at those poor souls, my mind would reel, deliberately set me apart from them, and quickly force my attentions elsewhere.
Now, I’m the guy sitting in that waiting room in a wheelchair, and I can see the less disabled patients looking at me through familiar eyes. I make it a point not to appear dour or downtrodden, and I’m always quick with a wisecrack or two, but I know too well the quiet horror they are feeling. Truth be told, they are not wrong in feeling it. As good a spin as you can put on it, as upbeat and determined as you might be in the face of it, the prospect of doing battle with an insidious enemy that slowly swallows you from the inside out is a perfect example of why human beings come equipped with a healthy capacity for denial.
No matter what stage of the disease you’re in, peering forward carries with it an element of dread. The endless road of progression, if left unchecked, must ultimately lead to an extremely ugly place. Along the way there are milestones to be reached; the first time you can no longer climb a flight of stairs, the first cane, the realization that you can no longer sign your name.
At first I measured the disease’s progressive toll in the slowly shrinking distances I could walk, first in miles, then blocks, then yards, and now feet. Every holiday and special event has become a psychological landmark, a yearly milestone from which I can look back to the same moment in previous years and assess just how much I’ve lost, while simultaneously wondering about the scope of the wreckage I’ll be dealing with in another year’s time. Will this Super Bowl be the last that I can watch from a couch that I’ve walked to under my own power? Or the last that I will be able to feed myself chips and dip? Or the last that I’ll be able to manipulate the remote control? Or, simply, the last?
Ongoing disease progression leaves us little time to mourn the losses we’ve suffered. If one were to literally lose a leg, as horrible as that would be, the trauma could be experienced, mourned, and then adapted to, leaving a person in a state of permanence, albeit an unfortunate one. With progressive illness, the losses just keep mounting, and life becomes a constant exercise in adaptation. I haven’t had the chance to fully mourn the loss of the use of my right hand, because I’m aware that my left appears to be following suit. I watch people happily strolling through the park, and feel a deep yearning, but that yearning is shadowed by the apprehension of insults yet to come. As layer upon layer of disability piles up, the process of mourning any single loss gets overwhelmed by the sheer volume of them all.
Strangely, and thankfully, I’ve found that the reality of each new stage of disability does not approach the horror that accompanied the anticipation of it. Back in the days before my illness, I’d have never thought I’d have the capacity to adapt to the level of disability I’m now experiencing. I once would have categorized the possibility of my being forced to rely on a wheelchair as unthinkable, but when that moment arrived, the world somehow kept spinning. The loss of functionality in my right arm and hand has led me to learn how to do things with my left, and through all manner of adaptations, I’ve managed to maintain an acceptable quality of life. So far, at least, the realities of encroaching disability have not been as ghastly as I’d imagined they would be. I am constantly aware, though, that there will come a tipping point, when even the barest illusion of normalcy will disintegrate under the weight of some new undeniable reality.
Of course, I am not without hope. Even without intervention, MS is an unpredictable beast, and patients with the most aggressive forms can sometimes find themselves reaching plateaus for years at a time. Medical research is shedding new light on the disease on an almost daily basis, and the promise of stem cells to repair damaged nerve tissue is steadily moving closer to becoming a reality. Trials of neuroprotective agents are currently underway, and radical new theories about the very nature of multiple sclerosis are finally being given proper scientific scrutiny.
Still, though, the disease marches on, the struggles become harder, and, with the help of friends and loved ones, the best we can do is strive to stay rooted in the moment…
This article was originally published on Marc’s website on 07/13/09 and is being featured on MultipleSclerosis.net with his permission.