To the Real Heroes...

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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 ass. 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.

I Guess Men Really Are Imbeciles...

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You see it portrayed in movies and on TV sitcoms all the time. Most men are jerks, insensitive clods who care only about themselves. It's always been my experience that women can be just as vile as men, but the results of a recent study seems to disprove that observation, at least in terms of how the two genders react when their life partners are struck with chronic illness.

Researchers from Washington University, in Seattle, found that "A man is seven times as likely to leave his wife when she becomes seriously ill as a woman is to abandon her husband". Sheesh, let's hear it for the boys...

The study looked at a number of different serious illnesses, including MS. In the 23 divorces studied that occurred when one member of the couple was diagnosed with MS, 22 involved the wife getting sick. Now, I know that MS strikes women in greater numbers than men, but certainly not in a 22:1 ratio. Similar numbers were found in couples dealing with the other serious illnesses looked at in the study as well.

Without a doubt, chronic illness puts tremendous stress on relationships. The stricken partner is suddenly faced with being put into a position of dependence, a position which many people are completely unaccustomed to, and emotionally ill-equipped to handle. On top of having to deal with a loss of independence, the sick person also has to deal with the shock and trauma of being sick. It's a double whammy.

The other member of the couple is suddenly burdened with the responsibilities of being the "caregiver", and sometimes I think that they have it harder than those of us who are ill. The caregiver may not have to deal with being physically ill themselves, but their lives have equally been thrown into turmoil. For both parties, the future once imagined, once dreamed of, has abruptly been snatched away. It's a raw deal, all around.

While women, I think, naturally tend to be more nurturing, most men have a well developed flight or fight response, something that's stuck with us since the days when people lived in caves. I've witnessed this phenomenon in action, when a close friend's longtime girlfriend developed a chronic illness. He fought hard along side her for quite some time , but gradually, over the course of a few years, the struggle simply became too much, he sunk into a deep depression, and finally ended the relationship. Given the circumstances, I couldn't condone his actions, but neither could I condemn him. I've wondered though, if the situation had been reversed, would his girlfriend have left him?

In my own marriage, my wife has served as a constant source of strength, hope, and inspiration, and has never let the gravity of the situation deflate her relentless optimism. I was diagnosed with progressive MS almost exactly one year after we were married, and I don't think anybody would have blamed her if she'd decided that this just wasn't what she signed up for. It's testament to the strength of her of character and the quality of her soul that she's stuck by me as the disease has relentlessly taken its toll.

The 6 1/2 years since my diagnosis have been a never-ending and often grueling series of doctor’s appointments, medical testing, and failed treatments, none of which has been pleasant or easy. Yet there is Karen, always by my side, somehow managing to keep me laughing at myself, at the world, and at the absurdity of the whole situation. Really, what could be more absurd than me, half crippled and zipping around in a wheelchair? Of course, there have been moments of despair, but together we have fought through them. Alone, I can't honestly say that I would have had the strength to persevere...

I'm sure many other women would've flown the coop, and certainly there are men who are slavishly committed to their sick wives. It just goes to show how important it is to choose the right person with whom to share your love.

In my years of belonging to various Internet MS communities, I've encountered countless people of both sexes who were abandoned by their spouses or lovers. Oftentimes, it seems the heartbreak of the lost relationship has caused more suffering than the disease itself. And yes, it does seem that most of those who have lost their partners are women.

So, I tip my hat to all the ladies out there who show us on a daily basis the real meaning of strength, through the power of example. And guys, I think we might learn a thing or two about loyalty and fortitude from those who in less enlightened times were called the "weaker sex"...