Wednesday, April 29, 2009

Becoming the Guy in the Wheelchair

I've recently heard from several people who are on the verge of needing wheelchairs, saying that my Wheelchair Kamikaze videos have helped them and their friends and families see that being in a wheelchair does not diminish the person sitting in it. That's a very hard and important realization to come to, and I don't mind saying that wrapping my mind around the fact that I was now "the guy in the wheelchair" was one of the most difficult adjustments I've ever had to make.

As I wrote in my previous post, the process of getting my wheelchair was a nightmarish twelve-month struggle of dealing with inept and corrupt wheelchair providers, and legions of insurance company hellions. The grand irony of the struggle was that I was fighting tooth and nail for something I was actually terrified of. Logically, and physically, it was clear that I needed a motorized power chair. Emotionally, on the other hand, it was anything but clear. Me, in a wheelchair? The thought left me feeling gutted.

In a way, the fact that I had to fight so hard to get the appropriate chair kept me from focusing too much on what getting that chair actually meant. On the day that the chair was finally delivered, I felt a momentary thrill of victory, followed by much longer moment of deep shock. So, this was my new normal. I was now the guy in the wheelchair.

I was well aware of how the healthy me usually interacted with people in wheelchairs. Or, rather, how I didn't interact with them. As my MS progressed, of course, I became more and more aware of the humanity of the individuals I saw in wheelchairs and on scooters, or struggling with walkers and other assistive devices. I knew all too well that their minds and personalities weren't broken, only their bodies, but that realization was a case of "it takes one to know one". When healthy, I think I was mostly just relieved that I wasn't one of them.

Well, now that person in the chair was me. After the wheelchair delivery guy had set up my chair and left, there I was, face to face with my new appendage. Being a boy (and make no mistake, at best I'm a mannish boy) I've always liked things with wheels and motors, and that fascination soon got the better of me. Alone in my small Manhattan apartment, I fired the damn thing up. Within seconds I had crashed into a coffee table and knocked over a wing chair. Out of sight from the rest of the world, I sat there giggling.

It's one thing, though, to zip around your apartment far from the public eye, but quite another to actually take the thing out onto the streets of Manhattan. For that momentous event, I waited for my angel of a wife to come home from work, and together we went for a spin around the neighborhood. My wife is relentlessly optimistic, and we share a keen sense of the absurd, and that first trip out in the wheelchair certainly did seem absurd, especially after I took a chunk out of the wall in front of the elevators on our floor. But we did it, and much to my surprise I wasn't the object of curiosity or derision, but was just "the guy in the wheelchair". It had been quite some time since I'd been able to go for a walk around the block, and the wheelchair was absolutely liberating. The size of my world had suddenly grown exponentially.

It took some time, but soon I found the chair to not only be physically empowering, but emotionally liberating as well. Have no illusions; people do treat you differently when you're sitting in a wheelchair. Because you are now stuck at ass level to the world, there's very little eye contact. Gone are the hundreds of little harmless flirtatious glances that passersby exchange almost reflexively. People are generally oblivious to anything going on below shoulder level, and some will actually walk right into you when you're sitting in a wheelchair. Like it or not, you are different. You're not walking around like everybody else; you are the person in the wheelchair.

But being the person in a wheelchair has its perks. If I ever tried to pull some of the stunts I do in the wheelchair while I was walking, like zipping through crowds, darting around people, and delighting in watching them scatter in front of me, I'd have gotten my ass kicked. But now, I'm the Wheelchair Kamikaze. Sorry if I startled you, but what are you going do, poke the gimp? Mind you, I'm not ever actually rude, I just like to go fast. Most people walk at about 3 mph. Well, in my chair, I can do almost three times that. It's almost like I have a superpower. Superman's got to fly, Wheelchair Kamikaze's got to go zoom...

I've also found that I'm much more likely to talk to strangers. I suppose this is a way of asserting my humanity. I'm not just a lump of flesh driving a wheelchair, I'm a human being, dammit, and a fairly entertaining one at that. Looking lost in Central Park? Here comes the Wheelchair Kamikaze to save the day. Arguing with your boyfriend over which tea to buy in the supermarket? Wheelchair Kamikaze has an opinion on tea, and he's happy to share it. I've found that once you pipe up, you often see a spark of understanding ignite in the person you're talking to. Hey, he's not just a guy in a wheelchair, he's a guy, in a wheelchair.

Damn right, and if you piss me off I'm going to run right over your tootsies.



  1. Giggles... you're just too much!

  2. kicker
    You know you're just encouraging such behavior and soon will have a gang of crazed wheelchairers across the country. The Wheelchair Liberation Gang. You'll get your own file in the CIA.

  3. Marc,
    As usual your wit get you through the most daunting of situations. Again, I applaud you.

  4. I just discovered your blog... and I'm so glad I did. You are hilarious!

  5. Marc,
    First time reading your blog. Wow! Amazingly (or not), this sounds like my story, more or less. I'll definitely come back for more.
    Thanks a million!
    Marc in NYC (really)

  6. Thanks, Centennial, I'm glad I could make you laugh.

    Kicker, I love the idea of crazed wheelchair gangs terrorizing the country. We could be the Hells Angels of wheelchair users...

    Florida, thanks for the applause. A good sense of humor is vital in making it through the day...

    Shannon, I'm glad you found my blog. I'll go check out yours...

    Marc, I can't believe I have a doppelgänger out there on the streets of New York. If we ever come face to face, it could mean the end of the universe, like matter meeting antimatter...

  7. Thanks again. Never ceases to amaze me that you say just what I am thinking-in a much more clever funny way of course. Again it is nice to know that "we" (people with MS or other illnesses) are not out there taking this monumental steps alone!

  8. Marc,

    Levity is necessary.

    Been down lately.

    Your blog helps.


  9. Marc,

    I love your attitude! It's an asset at any stage of this disease!

  10. How well you articulate what I am feeling -- but you add humor and it becomes so much better! As a PPMS person on the brink of wheelchair use, I appreciate you making this step doable. Thanks. Melinda

  11. Hey Marc what kind of chair do you have? Can you take picture of your chair and show how you mounted camera on it. I would like to do this too and share with everyone. Your blog is great love the videos.

    Tracy (I am a male people get confused with name)

  12. Anita, yes it's very important to feel that we're not going through this alone. I can't imagine how lonely suffering from this disease must've been in the days before the Internet...

    chem, I'm sorry you've been feeling down. Without a little levity things would be almost impossible to get through. I think you just have to appreciate the absurdity of it all...

    Manju, thanks for the kind words. As I'm sure you know, maintaining a positive attitude requires lots of hard work. Happiness is a choice we make millions of times a day...

    Melinda, I know that making the step to wheelchair use is a hard one. Just try to remember that it will actually be a positive in your life, and will make things so much easier...

    Tracy, I have a quantum Q6000Z. I'll take some pictures of my camera set up, and post them along with links to where to get the gear within the next few days. Thanks for giving me the idea. If you wind up making some videos, please let me know. I'd love to provide links to them on this site...

  13. BR and I just put up a ride down Bourbon Street at

  14. Marc, I've said it before but I am compelled to say it again: it kills me that you have this. However, you are doing SUCH good with your talents, there is almost a redeeming side to your suffering. But just almost.

    Anyhow, what I really was going to say was there is yet another perk to having to use a wheelchair, as I do for any distance now. No one could get Bruce tickets. But I got them for the handicapped section. Woo hoo.

  15. I just saw this entry. Man, I wish I had your heart and your energy and your courage!

    Not to mention your writing ability.

  16. Steve, great video! Would you mind if I posted a link to it on this site?

    Marie, thank you, my dear. I'd like to redeem my suffering for a couple of decades of good health, though. I was thinking I might be able to score some good Mets tickets using the "handicapped" gambit. I'll have to check on that...

    leela, keep in mind you're getting a very polished version of the picture. There are days that I have neither heart, energy, or courage. But I try my best to keep them at a minimum...

  17. Glad you liked it, Marc. Link away.

  18. ok. Marc. you skipped the part about having to create your new identity. i know, same guy, new improved package, and i'm asuming here cause that's what i had to do. only i'm a chick. so. I had to go from high heeled, tight jeaned, prettily smiling, to dumpy old gal in tennis shoes and a chair or what my hair colorists does with my hair is undone by the friggin walker! anyway. i'm handling my image thing now and you have succeeded most excellently in presenting yours. bravo.

  19. Wonderful! A wheelie equivalent of a bikie gang. Here in Queensland Australia bikie gangs are about to be declared illegal. Hey, by act of parliament I'm going to become a wheeled criminal. Oh the benefits of MS.

    Love the blog, keep it up.

  20. I thought I was the only one that did that. All my friends at the TV station I work at call me among other stupid things is "speedy". Much like you I have no time to go slow when my chair goes just about as fast as yours. Sometimes I like going around all the students on the campus that is around my neighborhood. (Marquette) They are so oblivious that they don't see me until they're almost in my lap, which in some cases wouldn't be that bad but I digress. Very funny blog entry I laughed out loud.

  21. Just found this site. I've found that once people see you they're happy to talk to you(probably relieved that you are otherwise 'normal') and many people start up conversations with me cuz I guess the wheelchair lady is less threatening -- if only they knew of my foot-destroying fantasies!

  22. Oh man, I am so glad to hear I am not the only one to have to fight for a year with the insurance company demons to get my chair. Hello, I have MS – this is not for the “convenience” of struggling to get through non-automated doors or idiots blocking the curb cuts. I have been known to run over some tootsies but only those that deserved it for the ignorance of their owners. There are only so many directions I can go and if you don’t move when I ask you politely I will run into you. I have found it very useful at the office too as I can easily speed off away from annoying co-workers who just want to patronize me. And the freedom it has given me to go out alone without fear of falling like I had with the cane is very liberating. Focusing on the positive aspects of being a speeding green lantern (psyched they made a movie about me now, ha) in my bright green chair has made the transition from the “girl with the cane walking like a drunk” to the “watch out for the girl with the powerful green chair” has made life with MS more interesting or at least tolerable. And to Miss Kimberly, no matter how “handicapped” I get I am not giving up my shoes. And I have been told many times I was being foolish. Well what do I have left sometimes but foolishness? Stay strong sister and remember, if you ever do have to transition to a wheelchair you can wear whatever shoes you want!

  23. Hey Marc

    Really enjoy your blog. Keeping our sense of humor is critical, no doubt!


  24. You must keep up your spirits. It's sometimes all we have left!