The Hospital, the Homeless Man, and Me

Image by cobalt123 via Flickr

Okay, here's the skinny on my recent health problems and hospital stay...

Two Saturdays ago I woke up feeling a bit out of sorts, which I attributed to my new Zanaflex prescription, which I'd only taken for two nights. My neuro had prescribed the medication for me because of incredibly annoying muscle spasms in my right leg, which were keeping me (and Karen) from getting to sleep at night. Definitely one of my most annoying MS symptoms, my leg often spasms so badly that the entire bed shakes, like a Japanese villager suddenly come face to face with Godzilla.

By mid afternoon that Saturday, I was feeling so unwell that I called my neuro's office, and spoke to the doctor on call, who I know quite well, and who is a terrific physician and person.

The doctor told me to quit taking Zanaflex, and increase my dosage of Klonopin. Fine, I thought, that's that. I tried to get on with my day .

Early that evening, at around 6 PM, I really started to feel like crap. I started losing strength in my left side (and I already have no strength in my right side), and began feeling achy and just not well. With much difficulty, I climbed into bed, and lay there under the covers, shivering. Karen had conked out on the living room couch, and I didn't want to bother her.

I fell asleep for a little while, but when I woke up, I was practically paralyzed. Yikes! I could barely move my left side at all, and found it impossible to try to get out of bed. Karen came in and took my temperature, which registered 99.5. For a person with a normal body temperature, 99.5° is barely a fever, but, like many MS patients, my normal body temperature is very low, usually around 97°. So, that 99.5° was more like 101.5° for a person whose baseline is the normal 98.6°.

The fever completely messed with my broken nervous system (that damned heat sensitivity thing), and left me with a useless body. Very disturbing, to say the least. I've learned in the years since my diagnosis that the symptoms brought on by fever are a harbinger of things to come in my disease course. This episode showed quite clearly what the future holds for me unless some intervention can put a stop to my disease progression. Not a comforting picture, in fact, quite distressing..

Karen called my neuro on his cell phone, and he told us to immediately go to the hospital emergency room. We explained that since I couldn't move, that would be kind of difficult. He insisted that we call for an ambulance. What a wonderful Saturday night. The ambulance arrived very quickly, and two quite strong female EMTs physically lifted me out of bed and onto the gurney, for the trip down the elevator, through the lobby of my building, and into the waiting ambulance. My first ever ambulance ride. How joyous.

We're suffering through one of the hottest July's on record here in New York, and the combination of my fever and the heat and humidity really knocked me out. I felt almost delirious, and Karen said I was speaking very slowly and slurring my words.

Once at the hospital, they did a bunch of blood tests, started me on a saline drip, and fed me some Tylenol. My fever reached all the way to 101.5° on their thermometers, meaning the equivalent for a non-MSer would be a fever of about 103.5°. After a long night in the emergency room, I was finally admitted to the hospital, and was given a room at about 6 AM.

Because I could barely move, I had to have a Foley catheter inserted, not a pleasant experience. For those of you who are blissfully ignorant of Foley catheters, they are a device that is snaked up your urethra and into your bladder, thereby facilitating "voiding". Oh boy, another thing I can cross off my bucket list! Note to my male readers: definitely avoid having things stuck up your wiener. Not that I should have to tell you that, but in case the thought ever crosses your mind, let it go. I'm sure the process is no more pleasant for females, but the nurse who did the deed told me that female anatomy presents less real estate to cross for the catheter to make it into the bladder. The device was a necessity, though, since I couldn't get out of bed to get to the bathroom, and, in all honesty, not having to worry about how I was going to pee was a great relief.

My hospital roommate was a 62-year-old homeless man who had a 22 inch open wound on his right calf. He was surly and belligerent to the doctors and nurses, and wouldn't answer me when I tried to make an introduction through the curtain that divided the room. In the meantime, the hospital staff was reticent to start me on any treatments, because my neuro is such a big name that they did want to do anything without his okay. I thought that was absolute bullshit, since I was obviously suffering from some kind of infection, and my neuro is not an infectious diseases expert. I kept asking for them to start me on some general antibiotic, but they insisted on waiting for blood test results and cultures. So basically it was Tylenol and saline, and I was miserable.

Sleep was almost impossible, as the Foley catheter necessitated my staying on my back, and I simply can't sleep on my back. Furthermore, my homeless man roommate talked to himself incessantly, not quite the bedtime lullaby I needed.

Karen was her usual wonderful self, providing company, comfort, and relief. We live only 10 blocks from the hospital, so Karen was able to visit as much as possible.

Since they were often loud and confrontational, I couldn't help but listen to my roommate's interactions with his doctors, and also with himself (not quite as loud and confrontational), and soon realized that although he was guarded and quarrelsome, he was also very intelligent. I picked up bits and pieces of his story as he chatted away to himself, and slowly pieced together that at one point in his life things had been relatively normal; he'd been married and had held a job as a cook, but somewhere along the way things went off the rails. He was clearly very sharp, and his chatter touched on a wide range of subjects, from history to philosophy to religion. Best I could tell, his wife left him, and he never recovered from the heartbreak.

I suppose most of us have experienced a heartbreak that we thought we'd never survive, one that crushed your spirit seemingly beyond recovery . Unlike the majority of us, though, for my roommate this nightmare became a reality. There was clearly some mental illness at play here, but whether that illness instigated or was the result of his wife's departure I could not tell. Late Sunday night, he tried to sing himself to sleep, and started quietly singing that old 70s soul tune "Have You Seen Her" (click here).

I see her face everywhere I go, in the streets and even in the picture show, have you seen her, tell me have you seen her? Oh I hear her voice as the cold winds blow, in the sweet music on my radio, have you seen her, tell me have you seen her?…

Maybe it was my fever and near delirium, but I found the whole thing very touching.

As it happens, I'm a huge fan of 70s soul music, and I have "Have You Seen Her" on the MP3 player that is integrated into my cell phone. During breakfast the next morning, I played the song through my phone's tinny speaker, and thus began a growing friendship between me and Greg, the homeless man. He was indeed very intelligent, had studied martial arts, was very knowledgeable about Zen and Taoism, was an expert on the use of herbs and plants as natural remedies, and was a big movie buff. He also was a little bit cuckoo, but who among us isn't? It dawned on me that he was belligerent simply because he'd been taken advantage of far too often, and he talked to himself probably because he usually had no one else to talk to. In one on one conversation, he was lucid and even dignified.

Anyway, even though all of my blood tests came back negative, late Monday I was seen by an infectious diseases doctor who immediately started me on antibiotics (azithromycin). My fever quickly came way down, and I started feeling much better. My neuro wanted me out of the hospital as soon as possible, since, in his words, "the only reason hospitals don't kill more people is because people are hard to kill".

As I was preparing to be discharged on Tuesday, the hospital staff informed my roommate Greg that he would have to leave the hospital within 24 hours, because there was no longer any medical reason to keep him there. They had tended to his wound, which he actually had taken very good care of himself, until he was caught in a rainstorm and the wound became wet and dirty, necessitating his hospitalization.

Unfortunately, once out of the hospital, Greg would have no place to go, and the hospital social worker was a complete bitch to him, offering only the option of going to a homeless shelter. He refused to go to one, because such shelters are filled with predators, and as a 62-year-old man with an open wound on his leg, he would be a quick target. He also refused to go to Bellevue, the New York City hospital for the indigent, because it is really no better than a prison. Karen and I let him use my cell phone for about an hour after I was officially discharged so that he could try to find some kind of better housing, which I believe he succeeded in doing. I'm not sure, though. I gave him my phone number, but he hasn't called, so I only hope that one of the leads he was following worked out. By the time I was discharged, this surly man who had just a few days before refused to even answer my attempts at conversation was referring to me as Marky Marc, and I felt a genuine bond between us.

One of my biggest surprises was finally getting a good look at Greg, as we had conducted virtually all of our conversations through the curtain that divided the hospital room. When I was leaving, I saw that Greg, though 62 years old, was built like the Incredible Hulk. Not bad for a man toughing it out on the streets of New York City.

I'd say I'm now about 80% healthy, but the whole experience definitely was a call to action. As I said before, the fever served as a sneak preview of the direction my illness is headed, and it isn't good. I must vigorously pursue the CCSVI angle, as I know that I do have a severely blocked jugular, and at the very least, that can't be doing me any good. I have little to lose, and I clearly must take the most aggressive posture possible.

All in all, this was certainly one of life's more interesting episodes. There I was, feeling like crap, scared shitless, forced out of the "now" to stare at the possibility of a miserable future. And there was Greg, the voice across the curtain, a bundle of lessons to be learned, not the least of which was perseverance and dignity in the face of constant struggle. Maybe there really is no such thing as coincidence...

To those readers who have sent e-mails over the last couple of weeks, I will try to answer every one, but please be patient. I'm trying not to overdo things, as I really don't want to risk another fever...

Report on the 7/26 CCSVI Symposium

Image via Wikipedia

First and foremost, I'd like to thank everybody who sent get well wishes via the the blog and e-mail during my recent illness. They were all deeply appreciated, and helped keep my spirits up when the going got tough. Since I want to report today on some timely CCSVI news, I'll report fully on my getting sick and subsequent hospital stay later in the week, but for now, suffice it to say that Multiple Sclerosis sucks. Big time.

Before I begin on the main topic of today's post, which is a report on a CCSVI symposium that was held on Monday, I'd like to direct everyone's attention to CCSVI.org (click here), the Internet home of the CCSVI Alliance, a nonprofit advocacy organization dedicated to educating patients with research-based information, providing tools for patients to advocate for themselves, and supporting medical professionals' exploration of Chronic Cerebrospinal Venous Insufficiency (CCSVI). I'm proud to be on the patient advisory board of the CCSVI Alliance, and hope to be very active in helping them in whatever way I can. And now, on to the primary topic of today's post...

A symposium on the "vascular theory of MS" (these days known far and wide as CCSVI) was held Monday 7/26 at SUNY Downstate Hospital in Brooklyn. Organized by Dr. Sal Sclafani, who did my attempted liberation procedure back in March, the symposium was attended by many of the heavy hitters in the world of CCSVI, including Dr. Tariq Sinan of Kuwait, Dr. Ivo Petrov of Bulgaria, Dr. Gary Siskin of Albany, New York, Dr. Fabrizio Salvi of Italy, Dr. David Hubbard of San Diego, California, Dr. Mark Haacke of Detroit, Michigan, and, of course, Dr. Sclafani himself.

Because of my recent health issues, my stamina is a bit low these days, so I missed the morning sessions, which dealt primarily with an overview of CCSVI and some of the imaging techniques used to identify the condition in patients non-invasively. I did attend the afternoon presentations, though, which included talks by Dr. Sinan, Dr. Petrov, and Dr. Siskin. All three physicians have been doing CCSVI procedures by the dozens, and between them account for over 400 "liberation procedures". They each related what they've learned treating patients for CCSVI, including case histories and some of the techniques they developed as their knowledge base and experience has grown.

Rather than give a blow-by-blow account of each presentation, I'll relate some of the general themes that emerged, and the pertinent "take away" points that were made by both the presenting doctors and the physicians in the audience. The one overarching theme that seemed to encompass all that was said is that we are at the very beginning of our understanding of the proper techniques and procedures used to treat the condition known as Chronic Cerebrospinal Venous Insufficiency. There is much more that is not known than is known, and the point was made several times that even for very experienced interventional radiologists, the treatment of CCSVI is a whole new ballgame, requiring brand new skills, techniques, and expertise. The treatment of CCSVI is definitely still a work in progress.

Though all three of the physicians whose presentations I watched agreed that there is strong correlation between MS and CCSVI (which is becoming more and more to seem like a given), there was much polite disagreement over the best methods and techniques used to treat the condition. The physicians differed in their opinions of the size of the balloons used during balloon angioplasty procedures, precisely which areas and degrees of stenosis warranted treatment, and the safety and efficacy of the use of stents.

Dr. Sinan, who is leading the Kuwaiti effort to treat as many of their MS patients with the liberation procedure as possible, has made significant use of balloons much larger than those used by other physicians, and has forgone the use of stents (due in large part to the orders of his government). He did state that aggressive balloon angioplasty procedures largely negated the need for the use of stents, and was quite adamant that treating valves in the lower part of internal jugular veins cleared up most of the problems seen higher up in those same veins. The other two presenting physicians were more open to the use of stents, but only after balloon angioplasty had failed repeatedly to open narrowed areas of the veins in question. The general consensus seemed to be that the use of stents should be considered a last resort, but that their safety and efficacy profiles appeared to be well within acceptable parameters.

One physician in the audience did caution that stents placed in the veins of dialysis patients (who, up until CCSVI came on the scene, were the patient population that most often received venous stents) had a patency rate of only 50% after one year, meaning that half of the stents failed within one year of implantation. Since the treatment of CCSVI is such a new endeavor, not enough time has elapsed to allow us to properly assess the durability of stents placed in the jugular and/or azygos veins. Certainly, it would seem that stents designed specifically for venous use need to be developed.

Dr. Petrov and Dr. Siskin were both more open to directly treating stenosis seen higher up in the jugular veins then was Dr. Sinan, who, as I mentioned before, is of the belief that treating lower stenosis had the effect of clearing up most of the abnormalities found higher up in the jugulars. Dr. Zamboni, the originator of the CCSVI hypothesis, also believes that treating stenosis lower in the veins very often negates the need to address higher stenosis.

All three doctors noted very low complication rates despite their different approaches and techniques, and also noted a fairly wide range in the effectiveness of the procedure from patient to patient. Dr. Siskin made a very strong case for managing the expectations of patients, who, although they may be very educated and logically understand that the CCSVI procedure will not likely "cure" their MS, can't help but hope for a miracle cure, given the insidious nature of Multiple Sclerosis. Dr. Siskin displayed a slide that clearly showed that one third of the patients he treated experienced very significant symptom improvements (most often involving cognitive, heat sensitivity, and balance and coordination issues), one third experienced slight improvement, and another third experienced no improvement whatsoever. The doctors did note that treatment efficacy didn't appear to be dramatically better or worse across the different "flavors" of MS (RRMS, SPMS, PPMS), although one of the doctors (in all honesty, I can't remember which one) did say that he saw some very good results in SPMS patients.

I was struck by how often the interventional radiologists doing the presentations referred to the fact that treating CCSVI was unlike almost anything they had undertaken before, and that there was quite a steep learning curve in "getting it right". Patients need to be wary of doctors jumping on the CCSVI bandwagon without the necessary experience to properly perform the procedures required. Dr. Siskin commented that he thought treating CCSVI would be a relative piece of cake, given his wealth of experience treating blocked arteries, which in reality makes up the bulk of the work that almost every interventional radiologist does. He was very surprised at the challenges presented by treating the veins associated with the central nervous system, and emphatically made this point during his presentation.

In summary, the symposium was a fascinating glimpse into the evolution of a treatment protocol that is in its infancy, and really raised more questions than it answered. The value of the knowledge being passed from physician to physician during the symposium was immeasurable, and I'm sure each left the meeting with far more understanding about CCSVI and its treatment than they had at the beginning of the day.

Unfortunately, although there were neurologists in the audience, the neurologic aspects and implications of the CCSVI hypothesis were not really touched upon; instead the technical aspects of treatment by interventional radiologists was the subject that ruled the day. No surprise, really, since the symposium was organized by an interventional radiologist, and IR's were doing the presentations. Two very good neurologists that work with my neuro were in attendance, and I'm anxious to hear their take on the proceedings. I think it's vital that the interventional radiology and neurology communities come together to fully explore the implications of CCSVI, not only for the betterment of science, but more importantly, for the betterment of patients so desperately in need of effective treatment.

Thanks again for all of the well wishes sent my way during my recent hospitalization and recovery. I'll get into the details of all that happened in my next post, so I'm sure you'll all be waiting with bated breath for my next entry, a tingle with anticipation. Here's a little teaser: my hospital roommate was a homeless man, who, despite his initial distrust and belligerence, and my miserable condition, I managed to become good friends with. We're all in this thing together, folks, and the only way out is through...

PS-Happy 70th birthday to my mom, the original kamikaze…

Please Stay Tuned...

Sorry for the delay since my last post, but this past Saturday night I was hit with some kind of a bug that caused a high fever, which completely debilitated me. As all of you suffering from MS know, "MS" + "Rise in Body Temperature" = "Bad Stuff", and this was an extreme example of that concept.

I started feeling sick Saturday afternoon, and by Saturday night at 9:30 PM my body temperature had risen high enough to render me, for all intents and purposes, completely paralyzed. My wife called my neuro, who said to get immediately to the hospital. Had to get there by ambulance, since I couldn't really move on my own.

The saga at the hospital was another story entirely, which I will relate in my next post. I'm back home now, having been discharged yesterday evening. I'm exhausted, still running a slight fever, but starting to feel a little bit better. Hopefully, things will improve day by day. For those who have sent me e-mails over the last few days, I'll try to respond to them as soon as I'm feeling up to it.

I'll be back with a full report just as soon as I'm well enough, which hopefully won't be too long. Until then, remember, go fast, even if you're fast is slow...

Pieces and Bits

I'm getting tired of titling posts "Bits and Pieces", so I cleverly changed things up this time around. Don't be too rattled, though, what follows is still a collection of MS related items that I thought you might find useful and/or interesting...

Image by hitthatswitch via Flickr

• How effective are the CRAB (Copaxone, Rebif, Avonex, and Betaseron) drugs at slowing down the progression of disability in MS patients? Not very, according to some recently published studies. A paper analyzing these results has been making the rounds of the Internet forums for the past week (click here for paper), and the conclusion is that these widely prescribed and very expensive drugs do practically nothing to halt disability progression in the Multiple Sclerosis. The paper does a wonderful job at analyzing this very disappointing data, but I have to respectfully disagree with several of the conclusions it draws from this information. Written by Ashton Embry, who administers the excellent alternative MS site "Direct-MS" (click here) which contains very good information on the role of nutrition in the battle against MS, the paper draws the conclusion that the CRAB drugs are no better than snake oil in treating MS. While the new data suggests that these drugs don't stop the inexorable march of disability in MS patients, the drugs have been shown in clinical studies to cut down on the number of relapses and enhancing lesions (as seen in MRIs) experienced by the MS patients taking them. When these drugs were first approved, the assumption was that a reduction in relapse rate and lesion load would translate into a significant delay in disease progression. While it is a crushing disappointment that the CRABs most likely do not slow progression, to say they are worthless overstates things a bit. The fact is, they do reduce relapse rates for some taking them, which does improve the quality of life for patients with Relapsing Remitting Multiple Sclerosis. Although an improvement in quality of life might be less than what was hoped for, it is still of considerable benefit to those afflicted with the disease. Certainly, the drugs have been overhyped, and overpriced, but patients who had been experiencing four or five relapses a year before being put on one of the CRABs, and only one or two after, would argue that their taking the drug has not been without value.

  The fact that research is now showing the CRAB drugs to be of limited, if any, value in halting or even delaying disease progression points to the abject failure of putting MS into a box marked "autoimmune". Countless millions of dollars have been spent developing and marketing these drugs, and billions upon billions of dollars have been made selling them to the captive audience that is the Multiple Sclerosis patient population. The CRAB drugs have been a tremendous boon both to pharmaceutical companies and to the practices of MS specialists, but this latest data highlights the fact that they are only sophisticated mechanisms for symptom management, and that the years spent searching for compounds to better tinker with the human immune system have taken the eye of medical research off of its rightful target, which should have been the search for the root cause of the autoimmune reaction. The concept of autoimmunity has managed to turn MS into a multibillion dollar a year industry, and yes, the drugs that have been developed with that concept in mind have been of some relief to some MS patients. One can only imagine, though, that if the same time, money, and energy had been put into searching for that which causes our immune systems to go awry, we'd be much farther along in our quest for a cure to the scourge that we call MS.

  Let me state unequivocally that I am a CCSVI advocate who believes that the hypothesis should be researched as vigorously and as quickly as possible. The recent data regarding the ineffectiveness of the CRAB drugs in combating disease progression makes CCSVI research all the more imperative, and should fuel the clamor of MS patients worldwide to have their voices heard. We need treatment studies, and we need them now. If such studies should by chance disprove the CCSVI hypothesis, then so be it. At least the effort will have been expended in a noble effort to free MS patients from their disease, rather than consign them to a lifetime of indentured servitude to drugs of only marginal effectiveness.

• MS is a notoriously hard disease to diagnose, the diagnostic process being one of exclusion, meaning that other possible conditions must be ruled out before a firm diagnosis of MS can be established. My own diagnosis has been seriously called into question, and there is disagreement between the doctors who have examined me at the National Institutes of Health and my personal neurologist over just what it is that is slowly crippling me. I've been questioning my diagnosis almost from the day I received it; my symptoms and disease course just didn't seem to match what I'd read about Primary Progressive Multiple Sclerosis and the experiences of others suffering from the disease. Studies have shown that between 5% -15% of those diagnosed with Multiple Sclerosis have been misdiagnosed, and are actually suffering from some other illness. Here's a paper (click here) that details the conditions that can be mistaken for MS, and includes a list of 100 such diseases. It's easy to make yourself crazy with information such as this (and believe me, I speak from experience), so be careful not to let this create doubt where there should be none, but if you have serious questions regarding your diagnosis, this paper is an invaluable resource. Knowledge is power, but be sure to wield it wisely.

• Multiple Sclerosis Dreams (click here for website) is a new organization designed to bring hope and excitement to patients living with MS. Similar to the Make a Wish Foundation, MS Dreams is a nonprofit organization that will be granting the dreams and wishes of desperate and needy MS sufferers of any age. Such dreams might include sending them on the vacation a lifetime, meeting someone they've found inspirational, or supplying them with much-needed treatments or devices. The organization will be in the running for a "Pepsi Refresh" grant of $25,000, which you can help them achieve by voting for MS dreams once the internet polls open on August 1. Although a new organization, its organizers seem extremely sincere and devoted, and I wish them the best of luck in launching their endeavor. So, please visit their website, and vote early and vote often...

• Researchers at UCLA have found a possible physiological cause for the depression often suffered by MS patients (click here for info). As if dealing with MS and its associated crap isn't depressing enough, it now appears that the disease causes atrophy of the hippocampus, a region of the brain closely associated with depression. MRIs have revealed that MS causes gray matter atrophy in general, so I suppose findings like this shouldn't be all that unexpected. A more momentous finding would be identifying what causes such atrophy, and may I suggest that decreased blood flow through the brain, such as might be seen in a vascular condition like, say, CCSVI, might be a pretty good candidate.

  Of course, zombies also have an appetite for gray matter, but I don't think I've ever seen a paper linking zombies with depression or MS. As a matter of fact, a good zombie movie often cheers me up, so I'm willing to go on record right here and right now stating that zombies do not cause MS. Then again, no zombie flick I've ever seen really identifies exactly what causes zombie-ism, so I guess it can’t be ruled out that MS causes zombies. So be careful during your next visit to the neurologist's office, you never know when one of your fellow patients may try to take a bite out of you.

Well, not the most uplifting collection of information I've ever presented, so let me leave you all with cheerfully healing thoughts of puppy dogs, rainbows, pretty ponies, and...

zombies zombies zombies. It's fun to say "zombie". (Don't forget, I dictate these posts using voice recognition software...)

Why Me? Well, Why Not Me?

Image by Oberazzi via Flickr

Though I've never seen any research studies proving this, I'd wager that one of the most commonly asked questions by those struck with chronic illness is "Why me?" They may not express it very often verbally, but using myself as a guide, I'd say this little two word query crosses the mind of most patients several times a day. I find that it often leaps to the forefront of my consciousness as I watch the evening news, with its daily parade of murderers, child molesters, and assorted miserable scoundrels, all sauntering along under their own power without need of a wheelchair, cane, or brace. Certainly, the universe must be upside down. Granted, I'm no angel, but the fact that Charles Manson can do jumping jacks to his heart's content, and I'm stuck relying on a set of wheels sprouting from my backside to simply get across the living room is just plain wrong. Is there no justice?

Well, the short answer is, no, there is no justice. Justice is a human construct, an invention we use to placate the need we have to see perceived bad punished, and good rewarded. The question of whether or not we live in an ordered universe has been a subject of puzzlement for mankind since we developed the mental capacity for self-awareness. My Zen leanings have me wanting to believe that somewhere a universal accounting is taking place, but there's a considerable part of me that can't shake the notion that this is all just one big jumbled game of pickup sticks, a tangle of randomness and happenstance in which we are caught up like the silver ball in a pinball machine, being buffeted from bumper to bumper. Still, shoving all rationality out of the way, the mind screams insistently for an answer, why me!

I get my hair cut by a delightfully wacky Thai woman who practices a strange sort of evangelical Buddhism. I've always had a knack for attracting the eccentric, most of whom I develop some real affection for, this lady no exception. She told me that her meditations have revealed to her that I suffer from Multiple Sclerosis in this life because in my past life I was an alcoholic who was cruel to animals. She also told me that my wife Karen is stuck as my caregiver this time around because we were together in my previous inebriated incarnation, and Karen was the dastardly miscreant who kept me swimming in booze. Due to these previous shared misdeeds, we're both paying the piper in our present manifestations. Her advice: stay away from the firewater, and carry around breadcrumbs to feed any birds I encounter on my wheelchair excursions, committing some random acts of kindness to make up for whatever heinous violations I visited on our furry and feathered friends in my previous life. I'm not quite sure I buy this story, but my mind shrieks for an answer to "why me?", and, lo and behold, the universe has provided me with one, along with a pretty decent haircut. So there.

A funny thing I've noticed about human nature (at least, this human’s nature) is that when awful things befall us, we're quick to ask "why me?" but when fortune smiles upon us, we don't question our deservedness, or the astounding wisdom of the universe. Back in June, 1994, I won $14,000 in the Florida lottery. The night before, I'd gone shopping in the supermarket on my way home from work, and then realized I'd forgotten to buy some butter. I stopped at a grimy little convenience store near where I lived to rectify the situation, and while waiting on line to pay for my item, I got stuck behind a guy buying what seemed like hundreds of dollars worth of lottery tickets. Figuring what the hell, when I finally made it to the cashier, I spent a buck on a Fantasy Five ticket, letting the lottery machine pick my numbers for me. The numbers on the ticket read 10, 15, 20, 24, and 25. I made mental note of the relative symmetry of the randomly generated numbers, and put the ticket in my wallet.

The next day, I started feeling sick at work (the result of the convenience store butter?), and went home soon after lunch. Once home, I started to climb into bed, newspaper in hand, when glancing at the front page I noticed that the Fantasy Five winning numbers included 10, 15, 20, and 25. Relatively sure that those numbers matched the digits on my ticket, I reached for my wallet to see just how close I'd come to winning the jackpot. I quickly confirmed that four of the numbers on the ticket matched those listed in the newspaper, and saw that the fifth number was 24. Checking the newspaper, I was shocked to see the number 24 nestled between the 20 and the 25. I had won the big one, all five numbers on my ticket miraculously matching the winning numbers listed in the newspaper. A quick call to the phone number listed on the back of my lottery ticket confirmed that I was indeed a winner, and I was told that if I made it to the local lottery office before 3 PM, I could have a check that day. My illness mysteriously lifted, I was soon on my way to pick up a nice big juicy check for over $10,000, the amount of my winnings minus the mandatory sacrifice to the tax man.

I'd imagined winning the lottery millions of times in the past, just as I had imagined being told I had some dread illness innumerable times (I was a very accomplished hypochondriac). My reactions when both situations passed from fantasy to reality bore little resemblance to the scenes that had played out in my mind. Upon winning the lottery, I wasn't shimmying around my apartment, caught up in ecstatic convulsions as I had pictured. I had a good laugh, called a friend to tell them of the news, and then got in my car and picked up my money. When told I had Multiple Sclerosis, I didn't collapse sobbing to the floor or sink into a sudden and permanent state of catatonia, as I had so many times in my mind, but experienced a stab of dismay, a sudden recalibration of my life's priorities, and a resolve to fight this freaking thing with everything I had. Perhaps because of my hypochondria, my diagnosis felt almost like a confirmation of something I'd known my whole life, that I was indeed sick. In retrospect, maybe I wasn't a hypochondriac after all, maybe I innately sensed that something just wasn't right.

Theoretical physicists, starting with Dr. Einstein, have known for quite some time that we live in a universe whose ultimate secrets lie far beyond our powers of comprehension. We can seek to tease apart the intricacies of the universe, but on a very basic level, though we may someday be able to describe them, we will never truly be able to experience them. The most current hypothesis, which draws closer to being proven with each new collision of speeding electrons in a particle accelerator, is that we live not in a universe but in a multiverse, the possibility of infinite parallel universes existing alongside our own appearing ever increasingly to be reality. We very likely exist within a framework of 11 dimensions, of which our puny little minds can only perceive three. There is much that is unseen, but very near.

Perhaps then there are answers to "why me?" somewhere amidst the vast incomprehensible, but they will forever be beyond the powers of our minds to grasp. As my diagnosis with MS and my winning the lottery illustrate, extremely unlikely events happen to each and every one of us, and our efforts to discern some deeper meaning or some recognizable pattern from that which befalls us have about as much chance at success as a beagle has at mastering calculus. Ultimately, the answer to "why me?" is probably best answered by its corollary, “why not me?” Good and bad are meted out to the deserving and undeserving both. Rather than struggle to understand, we must accept, and in that acceptance find the inner strength that is the fuel for the hope that drives the will to fight for that which MS has taken from us, and triumph, if not in body, than in spirit (but hopefully in body).

Be strong, my friends. The answers lie within.