I recently had the opportunity to interview the man I consider to be the “ultimate MS blogger,” Marc Stecker, otherwise known as the “Wheelchair Kamikaze!” Marc has been blogging since 2008, and has created an incredible collection of articles on just about every MS related topic, always with a touch of his trademark humor. Marc also includes video diaries of his travels via wheelchair (at top speed!) around New York City, where he lives with his wife, Karen.
I’m Marc, a 50-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker “Wheelchair Kamikaze”. I’ve managed to rig a camera to my chair, so I’m able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here. Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire… Prior to my enlistment in the Evil Empire, I worked as a video producer and editor. I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock ‘n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
Q: What have you learned about yourself since being diagnosed with MS that you may not have known before?
A: Well, I’ve learned some things about myself that have definitely been positives, and a few that I could have lived without ever knowing. Among the latter is that I have a high tolerance for pain (yippee!), and I seem to have a knack for understanding medical research papers, which often times seem like they are written in code. And, in fact, they really are, I think in order to keep the “sacred knowledge” in the hands of the privileged few (physicians and other researchers). Although there are, of course, exceptions, lots of the medical research out there isn’t really all that complicated, it’s just written using acronyms and million dollar words to make it appear almost indecipherable.
Among the more positive things I’ve learned about myself since I was diagnosed is that I’m much more resilient than I ever thought I could be, and that I have an inner scientist that had been asleep ever since I put away my chemistry set for the last time when I was about 14 years old. As my disease has progressed and forcibly stripped away many of the bells and whistles of life, in which it’s so easy to get lost, I’ve come to rediscover parts of myself that had been long hidden behind by the veneer of career, romance, social status, etc.
Though our culture tries awfully hard to convince us otherwise, I’ve learned that the true worth of a person can’t be judged by the title they hold at work, the car they drive, the clothes they wear, the grandeur of the place in which they live, or the physical attractiveness of the person on their arm, but rather by their inner essence, the core components of their personality that includes their basic values, moral compass, and general belief system. This disease gives you plenty of time to be introspective, and by peering within I’ve identified the parts of myself that I don’t like, and other parts of which I’m quite fond. Hopefully, I’ve been able to do a good bit of purging of the bad stuff, and I’ve tried to do my best to accentuate the positives.
I’ve always hated dishonesty, but now I have a seething disdain for it, especially dishonesty to self. Along those same lines, I’ve rediscovered the value of kindness, and especially kindness to self. In many ways, that’s the hardest type of kindness to practice. Not that you should on a wholesale basis absolve yourself of all of your sins, but you should try to clearly recognize and then endeavor to never repeat them. Part of this process is learning not to beat yourself up over your foibles, which can be very hard for those of us who are extremely self-critical. Thing is, the disease will do a good enough job of beating you up all on its own…
Q: Who are your heroes? Who inspires you the most?
A: Even when I was a kid, I had very few heroes. Not really sure why, I guess it’s just very early on I realized that there’s a jerk lurking somewhere beneath the surface of everyone, and that heroes only exist in the pages of comic books. That said, these days, if forced to name one person, I’d have to go with Robert Kennedy, JFK’s brother who was assassinated in 1968. He was a fascinating human being, who went from working on Sen. Joe McCarthy’s communist witch hunt to championing the poor and downtrodden, and who, after struggling mightily with his brother’s murder, committed himself to seeking justice for all members of society. His brother, Ted Kennedy, said this about him when delivering the eulogy at RFK’s funeral:
“My brother need not be idealized, or enlarged in death beyond what he was in life, to be remembered simply as a good and decent man, who saw wrong and tried to right it, saw suffering and tried to heal it, saw war and tried to stop it.”
To be remembered as a good and decent person, I think that may be the grandest aspiration of all. I admire Robert Kennedy’s intellect and depth of soul, which I think were best displayed during an improvised speech he gave to a potentially hostile crowd on the night that Martin Luther King was assassinated. The speech was made almost entirely off-the-cuff, and displays a basic sense of humanity, fed at least in part by the pain he felt that the loss of his own brother, Pres. John F. Kennedy, that makes RFK’s assassination one of the greatest tragedies this nation has endured. Had he been elected president 1968 one can only imagine how different these past 40+ years would have played out. In case anybody wants to see/listen to RFK’s speech, here’s a link to it on YouTube:
Q: What motivates you on your “bad days,” and gives you the strength to carry on?
A: Sometimes nothing motivates me on bad days, and I accept that it’s okay to listen to my body and do as close to nothing as possible if that’s the way I’m feeling. I think it’s very important for MS patients to realize this; discretion is the better part of valor, and some days it’s okay to just allow yourself to be a person with a horrible disease who just flat-out doesn’t feel good. Even on those days, though, it’s important to do nothing to the best of your ability, if that makes any sense. If you’re going to stay in bed and watch SpongeBob SquarePants all day, that’s fine, but try to enjoy the heck out of watching SpongeBob SquarePants all day while you do it, rather than just succumbing to the fear and misery that can become part of life with multiple sclerosis, using SpongeBob as a backdrop while you wallow in the muck. It’s okay to wallow every now and then, also, but don’t get stuck in the muck, whatever you do.
On most days, though, what motivates me is the knowledge that this day is the only “this day” that I’m ever going to have, this minute is the only “this minute” that I’m ever going to have, and this second is the only “this second” that I’m ever going to experience. Time is everybody’s most precious possession, and it gets more precious with each passing moment. Unfortunately, you don’t get any rebates or refunds for time you spend miserable; there’s no cosmic scorekeeper keeping track of the brownie points you might think your earning while wrapped in self-righteous unhappiness. I think back on all the time I wasted when I was healthy, tied up in knots about things that ultimately turned out to be completely insignificant– and, boy, I went out of my way to find things to be miserable about – and realize just what a fool I was.
Not saying that you can somehow just sit around grinning like a blithering idiot and smile away your problems, but we do shape our own realities through the filter of our minds, and we can control our emotions, not the other way around. Pop culture often leads us to believe that it’s our emotions that rule the day. In reality, nothing could be further from the truth, as your emotions are born of you, not you of them…
Q: Do you have any opinions about those seeking untested treatments, such as stem cell transplant, in foreign countries, especially given the recent fraudulent stem cell scam? Do you see stem cell therapy as a potential future therapy for MS?
A: Well, many MS patients, especially those with progressive MS, are caught between a rock and a hard place. There are currently no drugs that have been shown to effectively treat progressive MS, and at the very least these untested treatments offer hope, which is a very powerful thing. At the same time, one must constantly be on guard against letting hope eclipse reason, and if something sounds too good to be true, it almost always is.
Rest assured, there are plenty of unscrupulous bastards out there more than willing to make a buck by taking advantage of the desperation of sick people, so beware. I’m very well acquainted with that desperation, and my advice would be that before forking over tens of thousands of dollars to any individual or organization, make sure to do your research. Extraordinary claims demand extraordinary evidence, and the testimony of a relatively few people on the Internet does not equate to extraordinary evidence. Those same unscrupulous bastards are not above paying or otherwise compensating patients to make if not fraudulent then inflated claims about the efficacy of the treatment being marketed, not because those patients are being consciously dishonest, but because they want to curry favor with the people they think may hold the keys to their salvation.
Any honest-to-goodness, legitimate researcher will have a very easy to find paper trail of academic achievements and research studies with their names attached to them. A quick Google search should reveal just how legitimate is any individual making claims about medical research and innovative treatments. Look for scholarly papers published in legitimate scientific journals. If they don’t exist, giant red flags should start waving.
I do think that stem cells offer gargantuan potential for treating not only MS but a wide range of diseases. Right now, HSCT, the type of stem cell treatment that uses chemotherapy drugs to eradicate a patient’s immune system and then reboots it using stem cells is, on the strength of very strong research results, gaining credibility even amongst the most skeptical neurologists. Unfortunately, this type of treatment appears to have limited usefulness when applied to patients with progressive disease.
The regenerative stem cell therapies, the kind that seek to repair the damage done by MS to the nervous system, are really still in the experimental stages. Lots of potential there, but also still many, many questions to be asked and lessons to be learned. There are many extravagant claims being made about this kind of therapy by quite a few offshore clinics. All I can say is, be very, very careful. A healthy dose of skepticism can be a very valuable thing. Remember, if even half of what many of these places and the people who run them claim was true, their names would be plastered all over the mainstream news services and the individuals themselves would be buying plane tickets to pick up their Nobel prizes in Sweden. I wish with all of my heart that the answers were indeed out there, unfortunately, as far as I can tell, we’re not there yet.
Q: How have writing and blogging changed your daily life? Do you find writing therapeutic?
A: Writing the blog is definitely therapeutic, much more so than any of the MS therapies I’ve tried. I honestly never thought that more than a few dozen people, mostly friends and family, would ever read Wheelchair Kamikaze, and its success continues to astound me. Going back to one of your previous questions, researching items for the blog and answering email from readers is one of those things that motivates me on bad days. So, yeah, the blog has definitely impacted my daily life, in so many positive ways.
When I left work to go on disability, I wondered how I would fill my days. In all honesty, occupying my time turned out to not be that much of a problem; despite being relatively successful I never really liked working, and the freedom of no longer having to work was kind of exhilarating. I know this isn’t the case for many people, but who I was and what I did for a living very rarely meshed as I built my career. The success of Wheelchair Kamikaze really makes me wish I had devoted more time to writing when I was younger, which may have led me to a more fulfilling career. Better late than never, though, as they say. I just wish that I had something a lot more pleasant to blog about, and that there weren’t so many people who identify with my subject matter.
Q: Any advice you would have for those who are transitioning to using a wheelchair?
A: My best advice would be to just go for it. It took me way, way too long to finally get over myself and admit that I needed a wheelchair. By the time I did so, I was practically housebound, and the disease had definitely gotten the upper hand as far as my having any kind of independent social life was concerned. Believe me, there’s a big difference between Armchair Kamikaze and Wheelchair Kamikaze. In the months immediately preceding my getting the mechanical monster, my ability to leave the apartment on my own had dwindled to almost nil. The day I got my wheelchair the world was once again open for business, so to speak, and suddenly I was able to fill my days with adventurous urban excursions around New York City.
I vividly remember the day my chair was delivered. After the wheelchair tech left, I sat across from the chair giving it the stink eye, having a hard time accepting the fact that this thing was now basically a part of my broken body. Then the 12-year-old boy that lies just below the surface took note of the fact that the thing has wheels, motors, and the joystick. I dragged myself over to the chair and sat down, and was soon whizzing around my living room, recklessly smashing into and upending coffee tables, sofas, and chairs.
That evening when my wife came home she insisted we go out for a “walk”, a notion that had me horrified. Me, in public, in a wheelchair?!? Good heavens, no! With a bit of cajoling, my wife soon won out, and we were out on the streets of Manhattan, me with my backside firmly planted in a rolling electrical beast. I was certain that the attention of every pedestrian in the city would be riveted upon me, but instead nobody seemed to notice. Truth of the matter is, most people are so self-absorbed that they barely give any attention to anything outside of their own heads, and they could care less that some guy in a wheelchair is sharing the sidewalk. Gotta say, the moment I realized this was one of the few times I’ve ever been grateful that narcissism plays such a large role in human psychology.
Q: What was it like to be interviewed by Sanjay Gupta on CNN??
A: Sanjay was a really nice guy, but the total time I spent with him was probably about 20 minutes. The interview wasn’t for CNN, but for a website called everydayhealth.com, with which Dr. Gupta is associated. We actually shot the interview on two different days, which were separated by about eight months. On the first day we shot the part with Dr. Gupta interviewing me while we walked/rolled down a sidewalk in downtown Manhattan. The plan was that the journalist who was putting the piece together would interview me and my wife Karen a few weeks later, to finish the video. As it turns out I wound up having some health problems soon after shooting the Sanjay Gupta part, and then winter hit, and we really wanted to shoot the rest of the video outdoors. So we waited until spring (the part with Dr. Gupta was shot in late August), and finished up the video at Lincoln Center, which is quite a ways – several miles – from where Dr. Gupta and I took our little stroll. Just shows you how much editing plays a part in creating “movie magic”. Also shows you why you shouldn’t believe anything you see on a “reality” TV show. It’s all completely contrived…
Q: Do you realize that you have provided hope, inspiration, and healing to so many MS patients through your willingness to openly share your experience? Do you know, that through your brilliant and creative posts, you have truly changed the lives of MS patients around the world? (I mean it!) ☺
A: Okay, now I’m blushing. If even 1/1000 of what you say is true, I’m a very grateful man…