I’ve been surprised, flattered, and humbled by the tremendous response that my recent writings about my “Adventures in CCSVI Land” have elicited. I’m incredibly grateful to everybody who took the time to leave their extraordinarily gracious comments on my posts, or to send me personal e-mails filled with hope and encouragement. The fact that I might serve as an inspiration to anybody seems to me to be the greatest gift in the universe a person could be given, and to all who have taken the time to express such sentiments, I offer my deepest gratitude.
Some kind folks have even used the word “hero” in their correspondences with me. As much as I’d love to have a big “S” emblazoned on my chest, I feel compelled to say that the word hero should be reserved for those who display incredible valor, and who choose to put themselves at risk for the sake of others.
The reality of my situation is that I’m just a guy desperately trying to save his own a$$. I’ve found myself caught up in a raging river, heading swiftly towards a giant waterfall. I’m grasping for whatever handhold I might find, in a frantic effort at self preservation. A hero would be the person who jumped into the river to try to save me, despite the very real danger that they themselves might too be swept over the falls. I had no choice in the matter; real heroes must make the conscious decision to suspend their own survival instincts for the sake of someone else’s well being.
Although I’m not a hero, I do live with one. My wife Karen displays, each and every day, the quiet bravery and steadfastness that truly define the word. I was diagnosed just one year after we were married, and in the seven years since, Karen has quite literally been by my side through innumerable treatment sessions and doctors conferences, and suffered with me the long series of raised hopes and shattering disappointments that have defined the course of my disease. Without her, I very well may have checked out a long time ago. I’m stuck with myself and my situation, forced to experience the slow withering away of the “me” I once knew. Karen is here by choice; neither I nor any of my friends or family would have blamed her one bit if at any time along the way she had simply opted out. “In sickness and in health” sounds great in concept, but in practice it’s one hell of a promise to keep.
Getting hit with a chronic debilitating disease not only affects the person with the actual diagnosis, but all of those around them as well. Family and friends all feel the concussive force of the disease, which radiates blast waves much like an atom bomb. The patient may be at Ground Zero, but those in close proximity can suffer terribly also, and the closer they are, the more grievous the injuries inflicted. It’s not only the patient’s life that has been forever changed, but also the lives of all who love and care about them.
The patient, at least, receives all of the attention of the medical community, and most of the sympathy of the world at large. The husband, wife, child, or friend who is suddenly redefined as a “caregiver” is too often overlooked, the tremendous burden they must now bear taken for granted, sometimes even by the patient themselves.
A quick trip through the many Internet MS bulletin boards and forums is all it takes to discover that not all spouses and life partners make the choice to stick around once the disease has bared its fangs. I’ve read countless heartbreaking tales of MS patients being left by those they loved and trusted, and yet others of spouses and lovers sticking around for a while seemingly to only make the situation worse, offering no support at all but adding guilt and resentment to the cyclone of emotion caused by the disease itself, like ghouls intent on tormenting the tormented.
The MS landscape is littered with the smoking wreckage of lives derailed and dreams shattered, of hearts crushed and realities trampled. I’m blessed to have the support not only of the incredible woman who is my wife, but also of a circle of friends and family who don’t deny the reality of my situation, but refuse to let it overwhelm the foundations of their relationships with me. I only wish that every other patient was similarly blessed, as I’ve known far too many who have been forced to trod this agonizing road alone.
Happily, I’ve had the pleasure to meet other patients who have their own heroes. People whose spouses, lovers, and families are strong and brave enough to treat them, for the most part, as if the disease had never struck, but also wise enough to know when a helping hand or calming gesture is not only necessary but mandatory. Such qualities are impossible to learn, and it is a special breed indeed that possesses them along with the innate sense of how best to bring them to bear. They might not always know quite what actions to take, or what words are needed, but out of sheer love and devotion can turn potentially embarrassing moments into intensely comical ones, and can make the dehumanizing aspects of a dreadful disease a stage on which to demonstrate the best of what it means to be a human being.
So, I bow my head in praise and thankfulness to Karen and my dear family and friends, and also to Kim, Hilda, Marko, Jordie, Kirsty, Jon, Steven, and Allan, MS partners who I’ve had the privilege of meeting in the past few months; and to the countless others who I’ve not met and have never heard of, whose strength, love, and dedication have lightened the load and made the unbearable bearable, whose choice to stay in the game has made the game still worth playing.
These are the true heroes, for the most part unsung, but all worthy of blazing headlines and a most special Medal of Honor.
This article was originally published on Marc’s website on 3/24/10 and is being featured on MultipleSclerosis.net with his permission.