Readers voted for the health bloggers who inspire them to lead a stronger, healthier life as part of our annual Best Health Blog contest, and the results are in!
Marc Stecker, author of Wheelchair Kamikaze, came in 2nd place! He wins $500, and we are hugely inspired by his decision to donate the prize money to a multiple sclerosis (MS) nonprofit of his readers’ choice.
Read on to learn more about Stecker, his journey with MS, and how he got into blogging.
According to blogger Marc Stecker, an antiquated name for MS was “creeping paralysis.” Those words aptly describe one of the main effects of this autoimmune condition. MS destroys the body’s central nervous system, resulting in a number of symptoms including significant, ongoing loss of motor function.
Stecker, who has a progressive form of MS, was diagnosed in 2003 and nearly immediately was forced to retire from his career in television and video production. Confined to a wheelchair since 2007, he has now lost the use of his right (and dominant) hand.
Stecker started posting to Wheelchair Kamikaze using voice recognition software in 2009. The blog got its name when Stecker, refusing to give up New York City and his love of photography, drove his chair out into the world and shot a series of videos at wheelchair level. The progression of his disease means he can no longer use the camera, but the kamikaze spirit remains.
Ranging from humorous, to blunt, to calls to action, his posts are compelling reading and offer useful insight into the human condition for anyone, whether you have MS or not.
How would you describe the mission of Wheelchair Kamikaze?
Marc Stecker: I could tell you the mission of my blog, but then I’d have to kill you and all your readers.
But seriously, I’d say the mission is to make readers feel like they aren’t alone as they make their way down the somewhat treacherous path upon which MS leads us. Included in that mission is informing, educating, and entertaining folks as best I can. Throw in a few dashes of empathy, commiseration, and the expression of feelings that might be a little bit taboo and don’t usually get much airing, and I think you have the essence of the blog.
I also try to include a sense of the absurdity of it all. As humans, we are all players in a huge theater of the absurd. But people with chronic illnesses have seen some of the most basic elements of their lives torn asunder. They can often feel like rag dolls being played with by some especially devious cosmic pranksters. Seeing the absurdity amidst all the tragedy is sometimes the only air we can gasp to keep us going.
What motivated you to start blogging?
MS: I was first diagnosed with MS back in 2003, before Facebook. The only online resources to connect with other patients were internet MS forums. I became an active participant in many of these groups. As I became more educated about the disease and tried to pass on what I was learning, other forum members would often comment that I should start a blog.
I’d never even read a blog, and I couldn’t think of anything more boring for others than for me to put together an online MS diary. So I just ignored all of the suggestions, more out of ignorance than anything else.
In my healthy days, I had a successful career in TV and video production and was an avid amateur photographer. After MS forced me to retire in January 2007, I lost the ability to take photographs since I couldn’t hold a camera to my eye. My Christmas presents in 2008 included a flexible tripod I could attach to the arm of my wheelchair, and a very nice digital video camera that allowed me to frame pictures without having the camera at eye level.
Once I got the camera hooked up to my wheelchair, I ventured out and took my first few shots. I live just a few blocks from Central Park in one direction and from the Hudson River in the other. My speedy wheelchair can reach 8.5 mph, almost three times the average person’s walking speed. The park became my muse.
I turned the videos into humorous short pieces that I sent out to friends and family. The response was overwhelmingly positive, and once again the subject of my starting a blog reared its ugly head. This time I finally relented, and Wheelchair Kamikaze was born.
It seems like the blog connected your life before MS to your current life. Has it been helpful that way?
MS: The blog is the most tangible symbol signifying the gap between the old and new. The moment of retirement due to disability can be tremendously disorienting for many, many patients. For me it actually came as something of a relief. Although I found success in what is considered a ‘glamour’ industry, I never found much fulfillment in my career. When I did retire, all that pent up creativity exploded. I grudgingly accepted a wheelchair into my life, which directly led to the resumption of my photographic and video efforts, which, in turn, led to the blog.
Was it difficult to be open about your MS at first?
MS: I don’t think it ever really occurred to me to hide my condition. Unlike some MS, my disease didn’t spend much time being ‘invisible.’ Before long, I was limping noticeably, so there was really no hiding it.
My initial assumption was that my blog would only be read by friends and family. I remember the first time I got an email from a complete stranger, I could barely believe my eyes. When things really took off, I was more shocked than anything else, and the responses were generally so positive that the whole experience took on an almost dreamlike quality.
Has blogging changed your perspective on your ability to manage MS?
MS: The blog has put some method to the madness of my getting sick. I’m of mixed minds when it comes to subjects like fate, but the fact that Wheelchair Kamikaze may have, if even in the smallest of ways, helped some of my fellow members in this club that none of us ever wanted to join feel a little less overwhelmed by it all, then I am forever humbled and graced. I’ve shed very few tears over my own predicament in the nearly 14 years since my diagnosis, but some of the notes I’ve received from readers have left me weeping tears of empathy and gratitude.
Is blogging an empowering experience?
MS: When I was first diagnosed, I promised myself that I would fight the MS beast with everything I had, and that if it took me down, I was going to go down with all guns blazing, fists bloodied, spitting like a viper, cursing like a sailor. In large part, I feel that I’ve honored that promise.
When did you first notice that your posts were really resonating with people?
MS: When I first started writing the blog, much of the material had a humorous bent to it. In retrospect, I think this was something of a shield of sorts, as I’ve always used my sense of humor as a form of deflection.
About six months after I started the blog, I wrote a piece called “The Problem with Progression.” It was a no-holds-barred look at the horror of slowly watching yourself figuratively and literally disappear as the disabilities and indignities mount. That post garnered a huge response, which came as something of a shock to me. I can’t think of any higher honor than having somebody from halfway around the world reach out and gratefully tell me that I’ve offered them a lifeline. I wasn’t sure how people would react to such a frank exploration of the dark side.
To whom has your blog connected you that you wouldn’t have been able to approach otherwise?
MS: Turns out I’m quite good at translating medical jargon into everyday language. I also have a knack for keeping things in perspective when it comes to assessing the relative merits of the various ideas and treatment methodologies associated with MS. I’ve written extensively about much of the medical research associated with the disease, passing on what I hope is valuable information that allows people to empower themselves as patients. Readers seem to really appreciate my ability to cut through the gobbledygook. I’ve even received praise from the doctors and researchers who write that gobbledygook.
Of course, there are those physicians out there that aren’t all that thrilled with my calling them out for being pharmaceutical company shills, and I’m definitely not on any of the pharmaceutical companies’ ‘favorites’ lists, as I regularly highlight some of the abhorrent business practices in which these companies regularly indulge.
What would you change about the way MS is talked about?
MS: I find it extremely distressing that the public perception of MS has largely been shaped by the relatively healthy celebrities suffering from the disease. Although there have been great advances made in treating the relapsing, remitting form of the disease, it’s still far from a benign malady. And very little headway has been made in treating the progressive forms of MS, which can be horrible almost beyond description. I’m sick and tired of hearing and reading and watching stories of MS patients who have run marathons or climbed Mount Everest. Yes, everyone loves an inspirational story, but, unfortunately, those folks are still the exception rather than the rule.
I somehow never seem to see stories about all the poor souls who have been rendered fully conscious brains trapped in useless prisons of flesh and bone by the disease. I understand that such stories and images may be disturbing, but I think people need to be disturbed. Outraged, even.
What do you think is missing in current discussions about MS?
MS: What’s missing from the discussion of MS and most serious, chronic diseases is the fact that many of them have been turned into cash cows for the pharmaceutical companies and the clinicians that treat them. Patients are now seen as consumers, a point of view which is truly sick. The reasons for this are numerous, but primary among them is the ever-alluring siren song of the profit motive. A fundamental shift in the paradigm is needed. The focus needs to be turned from treating to curing, from profiting to liberating.
In an ideal world, how might pharmaceutical companies address MS and better spend their resources?
MS: There are no easy answers to the current situation. We have a dysfunctional system in which there is no one obvious component that can be easily remedied. The current thinking that the government equals bad government leads to bad medicine. The NIH has suffered tremendous budget cuts in the last few years, and the coming years only promise more of the same. Pharmaceutical companies have turned MS into a multibillion dollar per year industry by figuring out how to treat the disease, but horrifyingly little progress has been made in figuring out how to actually cure the damn thing.