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Receiving a diagnosis of multiple sclerosis, or any other dire illness, instantly transports a person to a very lonely place. They are suddenly no longer one of the "healthy", but are now marked by disease. A psychological shift occurs as the freshly minted patient grapples with their new reality. Although they might have been feeling unwell for some time, most folks are quite good at denial, so much so that many simply ignore their early symptoms, rationalizing them as inconsequential quirks, and proceed to get on with life, whistling past the graveyard as they go.
Back in the summer of 1995, I remember suddenly feeling the unmistakable sensation of liquid running down my left thigh, and I wondered for a moment if I was somehow inadvertently peeing in my pants. Reaching down, I felt that my thigh was dry, so no, I had not abruptly become incontinent. After a day or so, this weird sensation subsided, but in its place was a distinct numbness on the front of my thigh, stretching all the way from my hip to my knee, a lack of feeling that persists to this day. Given the fact that I was a world-class hypochondriac, you'd think that this disturbing symptom would've sent me in a panicked sprint to the nearest doctor. But no, I chalked my numb thigh up to a little fender bender I'd been in a few months earlier, and simply attributed the lack of feeling in my leg to some kind of pinched nerve or something. End of story, or so I hoped.
Eventually, though, after years of mounting warning signs and an increasing awareness that something just wasn't right, I developed a limp in my right leg, a symptom that couldn't be ignored. After seeing a number of doctors and undergoing a series of tests, I was finally shown some MRI images that clearly depicted a large lesion at the base of my brain stem, and was told I had MS. Whammo, I was plucked from the world of the healthy and forced into a scary new place, without so much as a parting gift or a welcoming orientation. I was confused, frightened, and, despite being surrounded by loving family and friends, suddenly quite alone.
No matter how genuinely well-meaning and caring the people around me were, there was simply no way for them to really understand the maelstrom of emotions that was roiling inside of me. Outwardly, I remained relatively calm and in control. Oh, I had my moments of gushing anguish and despair, but for the most part I maintained a façade of normality. Inside, though, it was as if I'd been gutted, and I felt like I was drowning, gasping for air. All of the sympathy and words of encouragement being directed my way were of little comfort, and in some ways made me feel even more singled out. Worse yet was the awkwardness of folks who decided it was probably best to leave my situation unacknowledged, and to act as if nothing had changed. While this might sound great in theory, the key word there is "act" as if nothing had changed. Suffice it to say that most people are very bad actors.
I deeply appreciated the declarations of support and affection that I received in the wake of my diagnosis, but, as beneficent as they were, they did very little to dampen the effects of the emotional nuclear bomb going off inside of me. The plain fact was that in some very real ways I was now quite alone in a crowd, as I was going through an experience that the members of my crowd not only had no personal knowledge of, but actively dreaded. Human beings are pack animals, tribal by nature, and despite being surrounded by people who genuinely cared, I was now a tribe of one.
Thankfully, I soon enough found salvation in the form of Internet chat rooms and forums. The web has a lively community of MS related sites, and although I at first felt like an intruder, reading much more than participating (lurking, it's called in forum lingo), before long communicating with fellow patients on the Internet became an elixir, and one that was quite addicting. Finally, a conduit to people who simply got it, who felt many of the feelings and experienced many of the experiences I was now going through, from whom I could learn and with whom I could share information and commiserate, no explanations necessary.
As my disease has progressed, and I have become more disabled, the need to communicate with others in similar situations has become even more vital. Like members of a secret society, we share hidden knowledge, from the indignities suffered courtesy the often maddening world of modern medicine, to the daily struggles of just doing things that not so long ago were no struggle at all. I recently had a conversation over lunch with another wheelchair person, during which we marveled at the fact that at some point in the past we'd been able to wake up, get showered, dressed, and out of the house in 45 minutes. Nowadays each of those acts could easily take more than 45 minutes, not including the periods of rest needed between each one. How could a healthy person ever really understand what it's like to try to make your way through world in which everyday objects have been turned into obstacles, from trouser buttons to socks to doors to utensils, all once mundane items now transformed into puzzles as complex as a Rubik's cube.
Fear is another factor that binds us, and what a tremendous relief it can be to talk to someone knows just what it's like to be left staring at the dark at the end of the tunnel, who has lived through those desperate moments when the worst-case scenario doesn't seem so far-fetched, when all of your best efforts at living in the moment and maintaining a stoic detachment temporarily evaporate and the ugly reality of the disease and its destructive capabilities breathes its rancid breath down your neck, whispering vile threats in your ear, threats which are far from empty. We're only human, after all, and despite our strongest efforts, such thoughts are never really all that far from the surface. When the conversation does turn to such matters, although very often laced with a heavy dose of gallows humor, the topic is usually discussed with frankness absent all denial, and speaking of what is sometimes considered unspeakable renders the sentiments expressed far less ominous than leaving them to fester in the dark recesses of the mind.
Yes, it takes one to know one, and despite the heartfelt gratitude I feel for all my healthy loved ones, friends and family alike, who have helped me get through this ordeal, the ability to connect with others who share an unwanted membership in our hideous little club has been absolutely vital. More often than not we laugh in spite of and at this insidious disease, defiant in the face of our shared adversity. We celebrate each other's victories, and mourn each other's losses, comrades in arms for the fight of our lives. Through the Internet and through this blog I've met many such folk, even if only by e-mail, and to all I say thank you, for understanding, for filling the void, for your courage and your kindness. My diagnosis may now be up in the air, but that doesn't change the inner or outer struggles I've experienced in dealing with my disease. As they say, a rose by any other name…
Now let's give this thing exactly what it deserves, a good swift kick in the ass, and if you can't kick then scratch its eyes out. Don't forget, living well is the best revenge, so live, my friends, live.