Image by Josh Liba via Flickr
Once again, I'd like to take the opportunity to thank everyone who has sent well wishes and messages of hope and healing. I am slowly "trending better" (in the words of my doctor) but still definitely feeling the effects of the truck that hit me. Hoping that the trend continues, and that someday very soon I'll be able to declare that I'm my good old bad old self.
In the meantime, I'm just going to try to gut my way through this, and resume as normal a schedule as my physical state will allow. I've got lots of catching up to do, both in terms of e-mails and private messages, and reading all of the MS and CCSVI related news that has accumulated over the past month. I'll pepper this blog with all items I find of interest, along with my usual commentary, for whatever that's worth. Seems that there's been a lot of CCSVI news both good and bad of late, and I'll try to make as quick a study of that as possible.
Anyway, I thought I'd share some of my experiences from the past four weeks. As during my hospital stay in July (click here for details), this last stint also included a rather colorful roommate. In July I was paired with an eccentric but very intelligent homeless person. This time around the man across the curtain was connected with a rather famous (at least here in New York) Irish mob called "The Westies" (click here for info).
The hospital I was in, Roosevelt Hospital, is on the fringes of the Manhattan neighborhood that has traditionally been called Hell's Kitchen. In these days of urban gentrification, there is an effort underway to re-label this neighborhood "Clinton", but the old name has stuck in everything but real estate brochures. As the moniker Hell's Kitchen implies, these were at one time pretty mean streets, controlled quite firmly by some lads of Irish descent not particularly averse to violence who came to be known as "The Westies". Though vestiges of the group still remain, by and large they've largely faded from view, and the neighborhood is now more the province of urban hipsters than old-school mobsters. When I first moved back to New York in 1999, I rented an apartment right in the heart of this neighborhood, on 49th St. between 9th and 10th Avenues.
My hospital roommate, Lenny, spoke in the kind of thick New York accent one rarely hears anymore, and sounded like one of the characters in the famous "Bowery Boys" movies of the 30s and 40s. He was probably in his late 50s, and had suffered a series of five strokes. The first night I was there, I overheard him telling an attending physician that he had survived quite a few traumas in his life, including a knifing to the chest and being thrown off the roof of a five-story building, and being no dummy, I put the accent and the stories together, and pretty much understood the kind of guy lying in the bed next to me. I figured I was in for an interesting few days.
Thing is, I tend to get along are quite well with guys like Lenny. I think it must be in my genes, as my great-grandfather and grandfather were both associated with the Jewish mob that thrived in the early decades of the 20th century, and came to be known as Murder, Inc. This was the group that spawned such characters as Meyer Lansky and Bugsy Siegel. Neither of my relatives were higher-ups in the organization, but suffice it to say that my grandfather didn't have a real job until he was 35 years old, when he married my grandmother, who was 17 years his junior. My grandmother pointedly assured me that my grandfather's associates were always perfect gentleman around her, and that she never saw my grandfather with a gun. She eventually forced him to quit the rackets, and he wound up working at a men's haberdashery, but family lore has it that he never quite went totally clean.
Whether for genetic reasons or not, I've generally gotten along very well with fellas who were "connected", and they've likewise usually taken a shine to me. Lenny was no exception. During the course of our conversations, which were not as lively as they might have been because of my raging fever and his sudden episodes of vomiting, I learned that almost all of Lenny's friends were either "dead, in jail, or in the witness protection program". I shared some stories about my ancestors, which he found highly entertaining, and he told me some details of his growing up in Hell's Kitchen, coincidentally on the same block that I moved to in 1999.
On my third night in the hospital, my fever was all the way up to 102°, the equivalent of nearly 104° for a person with a normal body temperature (my normal is about 97.2°). Lenny was suffering from a violent fit of vomiting, and though I continued pressing on the buzzer calling for a nurse, the medical staff was conspicuously absent. I took to shouting as loud as I could that somebody needed to get the fuck into my hospital room, because my roommate was in extreme distress. Finally, after about 10 min., some nurse’s aides came in to help Lenny out.
The next morning, Lenny thanked me for my actions the previous night, and told me that he would "never, never forget them". So, it seems that you all should probably try to remain on my good side, because I have a friend in Hell's Kitchen who could probably have someone bumped off for me for at a significantly discounted rate. I honestly wish Lenny the best, as he has several months of rehab from his strokes ahead of him, and the New York City that he represents is quickly disappearing, much to my overwhelming chagrin. I'd much rather share my city with folks like The Westies than with the criminals that populate Goldman Sachs and the rest of the Wall Street mobsters.
Since returning home, my convalescence has been nowhere near as exciting. I've been mostly confined to bed, and have spent my time watching innumerable documentaries on the chilling evil of the Nazis, searches for mythical beasts, and UFOs, three of my favorite subjects. Unfortunately, being stuck in bed leaves the mind much time to wander, and despite my usual efforts at mental discipline, my thoughts have often found themselves venturing into some very dark places. What would my life have been like without MS? Where would my career have led me? Although already moderately successful, my professional life was primed for launching to much greater heights had it not been cut short by this fracking disease. Who exactly was I now, this half paralyzed creature rendered dependent on others for basic daily needs? And what horrors does the future hold, should my disease remain on its current trajectory?
Frederick Nietzsche wrote, "Battle not with monsters, lest ye become a monster, and if you gaze into the abyss, the abyss gazes also into you." Indeed, at times during the past month, I've veered dangerously close to that abyss, and along with the physical tests of this latest illness, it's mental challenges have been almost equally profound. During the course of my MS, my mental state has often been in lockstep with my physical condition. At times when I'm feeling relatively well, Zen detachment becomes a goal much easier to achieve than when my body's progressive failings make themselves glaringly apparent. These past four weeks have found me at my physically weakest, battling an incredibly persistent fever, and without my usual activities and outlets for mental distraction, my thought processes have wandered into areas I rarely let them go.
I miss the old me. I miss being able to wake up, get showered, dressed, and out of the house in 45 minutes. These days it sometimes takes me 45 minutes to get out of bed. I miss regular social outings with friends, free from worries of wheelchair friendliness and urinary urgency. I want to be able to simply meet a few buddies in a divey bar and slowly, sloppily, and happily get totally bombed. My form of teetotaling MS has put an end to my drinking anything more than half a glass of wine, and that only on rare occasions. As much as I adore my wife, and as completely monogamous a man as I am, I miss the utterly harmless daily flirtations and sexual tensions of my old social interactions. MS and disability have made me into something of a neuter. Women don't flirt with guys in wheelchairs. I miss the furtive glances and hidden smiles, even though I would never act on them. Most of all, I guess, I miss the sense that the future was full of endless possibilities, and the magical thinking of the constant drive forward.
Make no mistake, I'm immensely proud and consistently astonished at the success that Wheelchair Kamikaze has found, and the fact that my silly little blog has enabled me to reach out through the ether and impact the lives of many, just as they have impacted my own. Perhaps there can be no greater success than helping others even as you help yourself, and I'm tremendously grateful to have been given this opportunity, but it's all been so unexpected. The impact that I always dreamed of making has come with a giant asterisk attached, and at an almost inconceivable cost. The emotional payoff of creating the blog has been beyond words, and I shudder to think what my life would be like without it. Hopefully, my rants and ruminations will continue to resonate with my fellow travelers down the road of MS, but, God, if only we could all just go back to being our healthy old selves, perhaps with a bit of the wisdom forced on us by MS thrown into the mix.
Okay, enough wallowing. No sense leaving an open invitation to the abyss, and really, there's so much left to live for. Like the "Ancient Aliens" documentary that I have recorded on our DVR, and the reams of CCSVI info I need to review.
Be careful about looking over the edge, though. I will, too.
