Stolen my life? Well, that's putting it extremely politely...
Six years ago I was an executive in a multinational music/entertainment conglomerate, with my fingerprints on products that reached the eyes and ears of millions of consumers worldwide. Walking into the production studios where I worked, I might have brushed past Tony Bennett, Shakira, David Bowie, Victoria's Secret models, or any one of dozens of major entertainment figures. I took full advantage of living in New York City, eagerly seeking new places to satisfy my culinary, sensory, and intellectual cravings. I'd married a wonderful girl just a year before.
Now, in what seems like a blink, here it is a mere 72 months later, and I've been on long-term disability for 18 of those months. My right arm and leg are useless, profoundly weak and twisted with spasticity. My left side is starting to follow suit. Five minutes after drinking a cup of coffee or tea, I'm apt to piss myself if a bathroom isn't readily available. Last Friday, a power wheelchair was delivered to my house.
I have PPMS, and there are currently no drugs or therapies available that are known to arrest this disease and its insidious progression. Based on the speed at which my disease has chewed me up thus far, I estimate I'm 12 to 18 months away from being bedridden. As an added bonus, the massive doses of steroids that were given to me in an attempt to stem the tide have resulted in my getting avascular necrosis in both hips and both shoulders, so I'm now in constant pain as well. I found out last Tuesday that the heads of both of my femurs have collapsed as a result of the condition.
I'm hopeful that recent advances in neuroregeneration and neurorepair give me at least a glimmer of a chance at maintaining some semblance of a productive life. Mesenchymal stem cell transplantation, should it ever make it to a clinical setting, may be all that stands between my remaining viable and becoming a brain imprisoned in a useless body.
So, count your blessings where you can find them. You can walk up two flights of stairs to get to your office? Rejoice. You still passed one out of two tests? Celebrate the victory.
I'm not saying this to diminish the impact of your disease, as I too well know that the psychological uncertainty of where this disease might take you, and the horrifying experience of watching yourself become gradually diminished, cannot be disregarded, or shunted aside like some petty annoyance.
But each day that you wake up,and can walk unaided to the bathroom without wincing in pain, while dragging 50% of your body along the way, and leaving a trail of droplets as you go, is a day you should thank the universe for, and a day that you absolutely must pack with all the life and joy you can muster. Live each minute, each second. Embrace this day, as it's the only today you'll ever have.
I'm thankful that I still have the wherewithal to make this post, albeit with the use of voice recognition software. I still have wonderful friends, a caring family, and a wife without whom I would be completely lost.
But life as I knew it, and expected it to be, was stolen from me in a most obscene mugging. Multiple sclerosis is a larcenous felon, the traitor within. Spit in its face and do your best to live your life regardless. And if the disease does eventually take you down, and I fervently hope that it doesn't, may it take you down with both of your fists swollen and bleeding from the mad fight you've waged against this fetid malady...
Last edited by marcstck
on Sun Jul 20, 2008 12:26 pm, edited 2 times in total.