Amy F. Quincy Author/Freelance Writer


March 2012

Miles Apart

As we crossed the finish line, people cheered and yelled our names. We were downtown, along with hordes of people, participating in the events of the Gate River Run.  We even got medals. Our time? A thirteen-minute mile.

This time, things were a bit different than when I used to do the run with my friends. For starters, instead of making it to the end on my own two feet, I was pushed in my wheelchair. My goal then was a nine-minute mile, sustained for 9.3 miles. This distance was just a mile (the Brooks Challenge Mile to be exact.) But when I was one of thousands of runners, no one ever cheered my name. I never came close to winning a medal. And I never got quite the same feeling of camaraderie.

When David, a friend I met through Brooks Adaptive Sports and Recreation Program, first asked me to go, my initial thought was —  no thanks. I don’t like calling attention to myself or my disability. The last thing I wanted to do was take part in some kind of Cripples On Parade function. (By the way, I hate that word, but the humorist writer in me thought it fit.)

Then David mentioned he needed someone to push. Faced with his own balance issues, he needed something sturdy (like me in my wheelchair) to hold on to. There are so few times I get to be of service to someone else. I quickly reconsidered. Besides, it might be fun. I underestimated just how much.

There seemed to be every kind of disability imaginable. And every kind of mobility aid — wheelchairs, walkers, canes and prosthetics. Able-bodied folk helped push wheelchairs, steady those on foot or guide the vision-impaired. Everyone cheered for everybody else.

Back when I could run the whole course, it seems me and my friends were caught up in the whole competition aspect of it all. This was more about support. I don’t mean to say it was more fun — well, yeah I do. It was more fun. Maybe I’m just a sucker for the feel-good stuff, but I was struck by how good it did feel.

All of us had faced our own personal struggles. Fought against obstacles to be there. It may just have been a mile, but when a challenge has this much meaning, it might as well be a marathon.

Now: with David and sister, Gwen
Then: Running the River Run

Juggling Act

Back in October, as I was striving to find balance in my life and juggling all of my time demands, I wrote about the concept of “big rocks.” The idea is to prioritize in terms of what is most important to you. These items are your big rocks. I established mine as Writing, Health and Frankie. It’s now almost six months later and after a brief interlude of sanity, I’m back to struggling. My big rocks are sinking me.

So, I’ve taken a pickaxe to them. I don’t think this is what Stephen R. Covey had in mind when he introduced the concept of big rocks in The Seven Habits of Highly Effective People. Don’t get me wrong — the exercise has been helpful. Knowing what the most important things are in the larger picture of my life is invaluable. It helps me every day when I scan the to-do list and decide what can wait. I’m just sick of the carry over. If I have to look at ~organize photos on computer~ one more day, I’m liable to lose it.

This past week, my big rocks took some major hits. After much discussion with my writing coach, it was decided that instead of the time-consuming written critiques I’d been doing on the computer, I’d provide only verbal feedback to my fellow writers. We also discussed the option of attending the group once, instead of twice a month. I don’t think I’ll do that since it would take away from my “me time.” (More on that later.)

I took a major chunk out of my Health rock when I put the gym on hold for two months. Disabled gym goers have one advantage. We may have fewer places where we can work out independently, but at least there’s no contract allowing a health club to continually suck fees from a checking account regardless of attendance.

Lastly, I asked my mom to take Frankie more. She misses him. He loves visiting her. It’s a win-win situation. In fact, as I write these words in peaceful solitude, he’s over there bugging her cat instead of mine.

After I had more manageable pebbles to deal with, I made some new rules. Rule 1 — schedule only one appointment per day. By the time you add in the time it takes me to ride the bus there and back, we’re talking about a half day anyway. Rule 2 — Keep one weekday free from appointments. I mean really free. No grocery shopping, no lunch date, nothing. I’ve realized, particularly as a writer, how wonderful a large expanse of free time feels, how ripe with possibility. Never underestimate the mental well-being gained from having nothing on the calendar. For those of you with full-time jobs five days a week — I’m sorry. What can I say? This is one of those disability perks I talked about.

Having knocked time off my big rocks, I’m focusing on taking the next several weeks to resolve some major projects. This brings me to New Rule Number 3 — Only one big project at a time. This seems obvious enough, but last month I took on getting a new power chair, physical therapy for my shoulder and updating my website. No wonder I felt stressed.

Finally, if I can leave you with just one thought. Don’t sacrifice your “me time.” This is one area I never skimp on. My me time is sitting watching the waves with Frankie, going out with friends, or enjoying a meal in front of a recorded movie (I never eat on the run.) It may be a little selfish, but this way, if everything else crumbles, one thing is sure to survive — you.

Tough Guys

One quadriplegic furiously chases down another as the two men move from their locked positions. Their wheelchairs race and then WHACK!  The clang of metal on metal rings out and one wheelchair crashes on its side, its occupant suspended helplessly. In any other setting, this would bring people running to assist, but here, a referee casually walks over and picks up the ball before someone rights the dangling player.

This is Quad Rugby, a.k.a. Murderball, and it’s all just part of the action. And having been to several games, I can tell you — there’s plenty of action. The rules are pretty simple. Each team tries to get the ball through the goal on their respective side of the court. The offense passes or carries the ball, while the defensive team blocks. There are fouls, rebounds and a lot of back and forth. It’s kind of like basketball, but without the hoops or dribbling. And, in my opinion, it’s more exciting. But don’t take my word for it. Check out this video of the Brooks Bandits (Brooks Adaptive Sports and Recreation Program) playing in the recent 5th Annual Southern Slam Quad Rugby Tournament.

It’s disconcerting at first, watching people in wheelchairs slam into each other. But then you realize, these guys are defying stereotypes and redefining what it means to be handicapped. While a friend and I watched an away game in Atlanta at one of the premier rehab hospitals in the country, a woman next to us had just met the parents of a 16 year-old who’d been severely injured in an accident. “Bring him down here,” she told them in the elevator that led from patient rooms to the indoor arena. “He needs to see what’s possible.”

I read a memoir by disabled cartoonist John Callahan in which he says he never forgot his first sight of wheelchair basketball players darting around and popping wheelies in the halls of his hospital. It gave him hope through the dark days to come. And the message? Life goes on. Goes on well. In fact, in the disabled world, inviting the Quad Rugby guys to your party is like inviting the football players back in high school. They’re the cool kids on the disabled schoolyard.

For those of you not in the know, quadriplegia means without good use of any of the four limbs (not to be confused with paraplegia, the loss of use of two limbs, usually by spinal cord injury.) Quadriplegics come in all shapes and sizes with greatly differing injuries and abilities. For example, I’m a quadriplegic. And I couldn’t catch or throw a ball if my life depended on it. Unless it was a beach ball. And even that’s questionable. Plus, I’m sure my double vision would get in the way if anyone was foolish enough to let me out on a court. There are quads who can walk (usually brain injured,) but many have suffered a spinal cord injury where the break was high enough to affect hand motor function or grip strength. I’ve seen double amputees playing Quad Rugby and one gentleman in Atlanta, wheeling his chair with a duct-taped elbow, making the former massage therapist in me cringe at the repetitive motion injury he was undoubtedly causing. Then I remembered — he has bigger problems to worry about.

Regardless of the difference in our abilities, we’re all disabled. We want, like anyone else, to belong somewhere, be part of something. These guys like being physical again and playing as part of a team. I enjoy the individual sports, like horseback riding or swimming, but with the camaraderie of a group of people to who, in many ways, I can relate. Everyone wants to look in the mirror of society and see themselves reflected there. And what you get from these games, or any adaptive sport, either as a participant or a spectator, is the sense that life is not over. Not by a long shot.

Imagination and Memory

Imagine for a moment, waking up in a hospital to find yourself paralyzed from head to toe, unable to move or even speak. That was the fate of Jean-Dominique Bauby, editor of French Elle, when he suffered a massive stroke that left him a victim of “locked-in syndrome” at the age of 42. He would never leave the hospital, never eat except by tube and never have a regular conversation again. And yet, it was during this time that he wrote his                                                                                            bestselling memoir, The Diving Bell                                                                                           and the Butterfly

Left with a fully functioning and brilliant mind, but able only to blink his left eyelid, he wrote and memorized entire paragraphs in his head. His speech therapist designed a system by which someone would read the alphabet and he could blink when they came to the letter he wanted. Sometimes I feel sorry for myself, pecking away with thumb and index finger at the rate of nine words a minute in the comfort of my own home. Bauby dictated an entire novel from his hospital bed, letter by painstaking letter. I think of him often.

His memoir, published in 1997, received critical acclaim and its beautiful prose is testament to the power of the human spirit. Bauby’s mind is the butterfly, taking flight from his physical body, the diving bell. A French film, directed by Julian Schnabel, followed in 2007 and was nominated for four Academy Awards in the areas of directing, cinematography, writing and editing. In the film version, the subtitled words for Bauby’s thoughts appear, “I’ve decided to stop pitying myself. Other than my eye, two things aren’t paralyzed. My imagination…and my memory. They’re the only two ways I can escape from my diving bell. I can imagine anything, anybody, anywhere.”

Bauby died of pneumonia on March 9, 1997, just two days after the publication of his memoir. This coming week, as we approach the anniversary of his death and I continue to use words to try and cultivate my own butterfly garden, I feel grateful for two things. My imagination…and my memory.

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