On more than one occasion, a complete stranger has yelled out to me, “Hey that looks like fun!” The strange thing about this remark is that I wasn’t participating in anything fun at all. I was simply driving my wheelchair from one place to another (not even fast). These comment has baffled me and I’ve wondered, “Why would someone say such a thing to me?”
I’ve thought, “Have they mistaken my wheelchair for a go-kart? Or maybe they think I’m test-driving a segway—a new one that accommodates to a seated position? Are these people challenged, like mentally challenged? Perhaps they meant it as a compliment? ” Then it dawned on me, “What if I’m driving around town with a smile on my face that insinuates that wheelchair driving is a good time? In that case, I would need to check myself in a mirror immediately.”
After obsessively studying myself in every full-length mirror that I’ve come across, I’ve rendered this study inconclusive. However, I feel a need to tell those that may be misinformed that wheelchair living is difficult (even though this is something I do not talk about often). For me, it means more time spent getting ready, needing and depending on help each day, consistently dropping things on the floor that I cannot pick-up myself, dealing with back-aches and other uncomfortable ailments and this is what is guaranteed on a good day. So perhaps you can imagine what a bad day in a wheelchair may be like—I like to call it Frustration City, which last time I checked is located far away from any place I would call fun.
Luckily and coincidentally, when I am living in Frustration City, something encouraging always happens to me and I am able to pull myself together. It’s been something simple, like a hot chocolate waiting for me when I’ve gotten to class. Or something much more complicated, like a woman explaining how her 16-year-old daughter will never be able to drive since she has lost function of her body due to a nerve disease like ALS (Lou Gehrig’s Disease). During the most recent meltdown, I came across Scott Sands blog.
Scott Sands is a friend and former patient of my pal Shannon, a Speech Therapist. She has talked about Scott for years. Mainly, that he is an amazing writer and that he too is confined to a wheelchair. Unlike me who is paralyzed, he has Duchenne’s Muscular Dystrophy; a degenerative muscular disease that is hereditary and effects only males.
As a baby, Scott appeared to have normal control over his body. Then, as he started to grow and around the age of 5-years-old, he slowly began losing muscle function starting with his hips and legs. Now that he is 41-years-old, Scott is left with only minimal function of his left index finger and a machine that helps him breathe. He blogs because he is a writer, but also because technically he was not supposed to live past 30-years-old. It is amazing to think he has succeeded this goal by over a decade.
I could sense Scott was feeling the same loss of motivation that I was when I began to read his blog, however, his was on a much bigger scale. As I sat feeling hopeless about trivial things and wanting to watch reality TV; Scott was contemplating what would happen if his breathing machine suddenly quit and promising each of his nurses that he wouldn’t die on their shift. My melt down suddenly seemed as ridiculous as strangers calling wheelchairs fun.
The following interview is unlike any one I have ever done before. Scott had to time his answers to my questions with the exhale of his breathing machine. Therefore, to read this interview accurately you must imagine about a 3-second pause between every couple of words.
I am glad I got a chance to meet Scott; he is one of the most determined people I have ever met … for many reasons. The main reason being that he still believes in trying—even when the odds are not in his favor.
Jana: How old are you?
How is that possible?
I have no idea.
According to medical experts you were suppose to die before 30.
Probably … more like … at 20. I got lucky … I guess.
How old were you when you got diagnosed with Duchenne’s Muscular Dystrophy?
I was probably … like 5.
What was your life like as a kid with DMD?
Challenging … I had to … learn to adapt … to everything … and it was … very gradual.
How do you define Duchenne?
A gradual deterioration … of muscle … and … ability.
At what age were you confined to a wheelchair?
Like … 9 … I could have made it … one more year … but … I was lazy.
[Laughs] At what point were you put on a breathing machine?
19 … I used … a mouthpiece … for 3 years … and then I … was trached.
What kind of thoughts goes through one’s head that has to rely on a breathing machine?
Don’t die. You get used to it. It becomes … a part of you.
How long does it take you to get ready in the morning?
Maybe … four hours with everything.
What time do you wake-up?
Anywhere … from 8-9 a.m. … very early.
That’s early? So you’re at night owl?
Do you stay up all night?
Until 1-2 a.m.
And then you wake-up at 8-9a.m.? That’s not a long time to be out of your wheelchair.
I’m in my chair … all day long. I don’t transfer.
What is the most daunting task of having your disability?
Probably speaking … and swallowing. But … I’m used to it. I don’t … think about what I can’t do … I do whatever I can. That’s quite a bit.
That was my next question. What do you do for fun?
Concerts … games … Magic games … computer … blogging … taking pictures …
How do you type?
I can show you. [Scott backs his chair up and drives towards his computer. There next to a keyboard is a small pad and stylus pen. As he begins to set-up to show me how he types, he becomes afraid it will take too much time. So instead, Shannon explains that the pen and pad lead to a virtual keyboard that appears on his monitor. Basically, he taps the pen to the pad to make letters appear, according to where the cursor is on the monitor. The space of the pad is only a few inches in height and width to accommodate his limited movement.]
How long does it take for you to write a blog?
Whoa! People better read it then if you’re putting that much effort into it…
Where is the farthest place you have traveled?
In my mind? Sicily
How about in real life?
What do you think about New York and its accessibility issues?
I’m from there. It’s not good … in the city. In Long Island … it’s very easy.
Scott and Derek Jeter
That’s good to know. I was recently in New York City and I thought the accessibility was terrible.
It’s difficult …
When did you move here from New York?
I came here … on vacation … and got pneumonia. They trached me … and I never left.
When was that?
December … 1989
Was it too much for your medical condition to move back?
The weather … is good here … and … I was very sick.
Do you like Orlando?
I’d rather be … in New York.
Since you had to leave your hometown so abruptly, was it hard to stay connected with your friends?
I was … really sick … for 3 years … and … didn’t have a computer. I could barely … use my phone. They found me … in … Esquire Magazine … and … came to visit … after 19 years.
That’s cool. Do you ever feel people staring at you while in public?
I used to. Now, that I’m older … not so many … except maybe … children.
Do you ever want to tell these people something?
Shove it …
[Laughs] What kind of education do you have?
A degree … in Journalism.
What more do you want to accomplish in your life?
I want to … write a book. I want to … find and help everyone … out there … with this disease. I want … to show them … it’s … not the end … of the world. You can … live … into your 40’s. Twenty years ago … there was no way.
Do you think that is due to the advancement of technology?
And … medication … and ventilators … good care … and great doctors.
Do you have a back-up ventilator?
My nurse …
[Laughs] So, I feel flattered that my site is listed under your favorites on your blog site. I mean, I’m up there next to Youtube.com and Sting.
You are … up there … but … you are … underneath Sting …
… and Jesus.
*Interview Date: February 20, 2008
Go to www.scottsandsalive.com to check out Scott’s Blog.