Marc Stecker found out he had multiple sclerosis (MS) in May 2003. For Marc, a former director of DVD production for a major music company, the diagnosis led to a massive shift in his lifestyle and mindset, particularly after becoming a wheelchair user in 2007.
Soon after, though, Marc — who has a passion for photography — attached a camera to his wheelchair and drove it out into the streets of New York City. He shot a series of photos and videos that capture the essence of his hometown. And he’s also been blogging about his life and experiences on Wheelchair Kamikaze, which we named one of the top MS blogs on the web.
We reached out to Marc to learn the pros and cons of using the internet to find support for his MS, and what the makers of technological tools and online resources still need to get right when it comes to helping people with the condition.
Q & A with Marc Stecker of Wheelchair Kamikaze
When you received your diagnosis of MS, did you feel like you had all the tools you needed to put together a support system?
Absolutely not. When I was diagnosed 14 years ago, there was really no social media, and the only patient-to-patient support available was via internet forums.
My first MS neurologist wasn’t a very warm and fuzzy person, and there was no real social support offered by his staff. So, I had to turn to the internet, and luckily I found several very good patient forums — all moderated by professionals — where I found lots of terrific info and, more importantly, contact with other patients dealing with the disease.
It’s incredible how close the bonds are that can be formed through the internet. By the time I’d had the disease for a few years, some of my best friends were people I’d never really met. Just folks I was chatting with on the internet, other members of some of the MS forums I had found.
Now, of course, social media has exploded. There are many more outlets from which an MS patient can choose. Almost too many, I think, and lots of the info out there can be misleading, and sometimes even flat-out wrong. Facebook is great for the social interaction part of dealing with the disease, but I can’t tell you how much misinformation I’ve seen passed along in Facebook groups. Makes me want to tear my hair out.
How do you use technology when it comes to managing your MS?
I use the internet exclusively to research all aspects of multiple sclerosis. I write the popular MS-themed blog Wheelchair Kamikaze, which I started in early 2009. In that time, I’ve written on all aspects of MS, from introspective pieces on the emotional aspects of dealing with the disease to updates on all the latest research developments.
Wheelchair Kamikaze has become popular beyond anything I ever could’ve imagined, and is now approaching over 3 million page views. When I started, I never expected more than a few dozen people to ever look at the page. Through the blog, I’ve come to interact with thousands of MS patients, and even lots of neurologists and other medical professionals.
Obviously, something like Wheelchair Kamikaze wouldn’t be feasible without the internet and technology, because it is an outlet for my writing, videos, and photos, as well as a conduit to a vast amount of MS info and research.
As a photographer and videographer, technology must play an especially important role in your life. What cameras and tools do you have attached to your wheelchair?
Unfortunately, these days my MS has progressed to the point that I can no longer use a camera, attached to my wheelchair or not. My right arm is completely paralyzed, and my left arm and hand are too weak and lack the dexterity to properly fiddle with the camera controls. I haven’t done any videos since 2010, and haven’t taken any photos since 2013. I do miss it terribly, since — before I was forced to “retire” — I had a 20-year career in TV and video production, and had long been an amateur photographer.
When I was shooting from my wheelchair, though, I used a flexible tripod called a Gorillapod, which I was able to wrap around the arm of my wheelchair. I wanted I mounted a digital camera that was capable of shooting video.
I went through a series of cameras, but because of the configuration of my tripod rig, all of the cameras needed flip-out viewing screens, so I could use the camera at what amounts to waist level. There are a variety of cameras with this feature, from simple point-and-shoots to much more sophisticated professional-level cameras.
What inspired you to start filming and photographing from your wheelchair vantage point?
My wife was instrumental in turning me into a wheelchair photographer and videographer. When I first got the wheelchair, in the summer of 2008, she suggested that I try hooking a camera up to it. My wife knew how much of an avid amateur photographer I’d been before getting sick. She thought that this would be a good way for me to “get back in the game.”
Being an obstinate fool, I of course resisted her ideas. She kept asking what I thought it would take to put together a wheelchair-friendly camera rig, and she slowly got the information out of me.
That Christmas, she surprised me with all of the needed components, which I kind of grudgingly hooked up to the wheelchair. Before long, I was out and about every day, making videos and shooting photos, exploring every nook and cranny of Central Park.
The wheelchair actually turned out to be something of a boon in this regard, as it was capable of traveling faster than I could ever walk, so I explored areas of the park I never would have otherwise seen. I also did a lot of shooting along the Hudson River, and on the streets of NYC.
What’s your favorite project that you’ve worked on?
I think my favorite video is one I did called “In Search of Audrey Hepburn,” which involved a long wheelchair trip through the streets of New York looking for a statue near the UN building. It was inspired by Audrey Hepburn’s work with children. The video was dedicated to a friend I had made on an internet forum, who has sadly since passed. He was a real character, and was obsessed with Audrey Hepburn.
What’s the most important piece of advice you’ve ever gotten from someone else living with MS?
That’s a very good question. I don’t know that I can think of any one individual piece of advice that sticks out, but on the whole, I’ve found the strength and fortitude of my fellow MSers to carry on as best as possible in the face of what can sometimes be a hideous illness incredibly inspiring.
I suppose the best piece of advice for everybody, both well and ill, is to seize the day. The past is gone, and unfortunately, we can’t go back and fix whatever mistakes we’ve made. The future is unknowable, and worrying about something that is unknowable is an effort in futility.
The only tangible bit of time we have to work with is the present, and even in the direst of circumstances, there is usually some bit of good that can be found, even if one has to dig through a huge pile of crap to get to it.
Then there’s the advice my grandmother once gave me when I was a kid: “Ladies and gentlemen, take my advice. Take off your bloomers, and slide on the ice.” Still not quite sure what she meant by that, but in a nutshell, I think it means don’t take yourself too seriously.
What’s one thing about MS you wish other people understood?
I think it’s important for all people, both those with and without MS, to understand just how variable the disease can be from person to person.
Some patients can have the disease for 25 years and barely walk with a limp, while others are completely bedridden within five years. Therefore, there’s no one-size-fits-all solution for this disease, or for the emotional and spiritual impact the disease has on those who suffer from it.
In the case of MS, what’s good for the goose isn’t necessarily good for the gander, and insisting that this particular diet or that particular drug or some particular alternative treatment is the key to easing the burden of the disease for all can actually do more harm than good. Of course, all advice is meant to be helpful, but when dealing with MS and the people who have it, one must fully grasp that what works for one patient will not necessarily work for another.
Through the years, I have interacted with thousands of MS patients, and it always breaks my heart to hear from patients who think that they are somehow failures because they tried some hyped treatment option with great enthusiasm, only to find that it did nothing for them. They didn’t fail, and the treatment option itself might not be a failure, either. It’s just that each person’s MS can be quite different.
How do you think technology can be improved, in terms of helping improve the way people access the tools they need to manage MS?
I think the creators of any technological tools geared for MS patients must keep in mind the wide disparity in the wants and needs of the MS population. Some patients, like me, really want to dive deep into the research and understand everything there is to understand about the disease and how it affects those who suffer from it, both physically and emotionally. Other patients just want an accurate thumbnail, something they can easily digest and work with. And there are a whole lot of patients who fall right in between these two extremes.
The challenge, therefore, is in designing tools simple enough to satisfy those who don’t want to go too deep, yet sophisticated enough for patients looking for a richer experience. Also, since the disease comes in a variety of flavors — relapsing MS and progressive MS — developers need to keep in mind the differing needs of these two groups.