Image by Ivan Walsh via Flickr
My last post characterized MS as an incorrigible thief, gradually stealing all that is near and dear to the patients it torments and those who love them. Combined with a video produced by the NMSS's Beth Clark that heart wrenchingly recounted her family's struggles with her mom's very aggressive MS, the post took a hard look at some of the ugly realities about Multiple Sclerosis, and, judging by the many online comments and private e-mails the post elicited, it hit readers hard, and was quite upsetting to many.
It's never my intent to upset or depress the readers of this space, and I try to infuse my writings with reasons for hope, and with strategies for fighting back against our common foe, if not in body than in spirit. When viewing Beth's video, it's important to keep in mind that her mom was hit with an especially destructive and debilitating form of MS, and was stricken at a time when there were no medical treatments for the disease.
Still, MS is at best a daunting adversary. For those of us with the progressive forms of the disease, there are no proven pharmaceutical interventions. There are medicines to help us manage some of our symptoms, but we are largely left to watch helplessly as the disease takes its physical toll, which proceeds at different rates and in different forms for each of us, but marches ever onward for us all. How then, to separate the physical from the psychological, and not allow MS to break our spirit even as it spins its contemptible web of disability?
Although it's been said so often so that the sentiment might feel dangerously trite, it is imperative to do your best to live in the now. Even with a present filled with uncomfortable and regrettable realities, the only way to find contentment in any form is to stay rooted in the moment. It can be enormously enticing to dwell in the past, which from the vantage point of a compromised present can seem like a dreamlike fantasy land. Even hard times from years long gone can suddenly be yearned for when remembered from the seat of the wheelchair. Oh, to suffer some heartbreak but still be able to walk, to live through one of life's bitter disappointments but still be able to get up the next day with the chance to make right the wrongs.
Make no mistake, it can be of significant joy and comfort to remember the glory days, and connecting with friends and family who shared those times is an important way of confirming that, yes, all of that crazy stuff really did happen, but the past is best used to inform the present, to learn from it the lessons that allow us to make the most of our most precious possession, today. We only get one shot at today, and those of us who deal with the reality of chronic illness know all too well that wasted time can never be recovered, that when today converts to yesterday it is no longer a living thing, but becomes just a lifeless snapshot for the scrapbook in your mind. Better make this day a good one, despite whatever hardships must be overcome, because there is no greater tragedy than looking back and realizing that you've let yet more of that most precious and ever dwindling commodity, time, slip away.
The fact that MS is a progressive disease can make the future appear to be quite an ugly proposition. No matter what stage of the disease you're in, the knowledge that this day could very well find you in better shape than tomorrow can turn all tomorrows into fearsome things. But the incontrovertible truth is that no man knows what tomorrow will bring.
There is an ancient Yiddish proverb that says, "Man Plans, God Laughs". Regardless of your religious inclinations, the truth contained in those words is undeniable. If "God" doesn't work for you, then substitute "The Universe" or "The Fates". It is the rare person who can think back 10 years and honestly say that their lives have unfolded just as they would have predicted. For most of us, healthy or sick, the jigs and jags of life bring breathtaking surprises, good, bad, and everything in between. Remember, too, that good and bad are simply labels that we choose to apply to the circumstances in our lives. Nothing that happens to us is inherently good or bad, they only become so when we choose to tag them as such.
We all have little preview clips of what we expect the future to hold running persistently in our minds. Like the previews we see in movie theaters, though, these clips rarely bear much in common with the realities of the full-blown production. For a person with MS, the preview running in our heads can easily be that of a horror flick, but like most fright films, the anticipation is often much more terrifying than the reality turns out to be.
When first given my diagnosis, my inner projectionist spooled up reels of worst-case scenarios, some of which actually did resemble the condition in which I now find myself. The image of me in a wheelchair was sickening, and along with that image I conjured up all sorts of torment and agony. The reality of me in a wheelchair, though, while nothing I would have chosen, is a far cry from the misery I then imagined.
Much to my surprise, I'm still me. I can still laugh, and love, and worry, and despise, just like the old me. And without the wheelchair, there would be no Wheelchair Kamikaze, which has turned out to be one of the most humbling and gratifying roles I've ever been privileged to play. The give-and-take I've had with the readers of this blog have been incredibly enriching, and I'm grateful to everyone who reads these words.
Would I chuck it all for the chance to take a graceful and painless stroll around the block? Hell yes, but I refuse to let the lack of that option plunge me into the depths of despair. I choose to experience this moment in its fullness, informed by the lessons of the past and undaunted by fears of the future. It's not always easy, this living moment to moment, and I screw up more than I care to admit, but with practice and diligence it can be done more often than not.
As a community, people with MS have more reason for hope now than ever before. CCSVI holds the tremendous and very real promise of fundamentally changing the way Multiple Sclerosis is thought of and treated. Even if CCSVI turns out to be a false lead (which I don't think it will be), the forces that the CCSVI movement have unleashed will never again be put back in their bottle. Patients have learned to advocate for themselves, and researchers are being pried away from their beloved "autoimmune" model and forced to question all their previous assumptions. Additionally, stem cell research moves steadily forward, shining rays of hope on those whose nervous systems are in desperate need of repair.
We could very well be standing (or sitting, whatever the case may be) at the cusp of a radical new era in the care and treatment of those afflicted with Multiple Sclerosis. All the more reason to not flee into your own past, or crumble at thoughts of your possible future, but to live each day as if it's the last today you'll ever have. Because it is; for both sick and healthy alike, once gone, today is never coming back.