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Amy F. Quincy Author/Freelance Writer

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Tough Stuff

I recently attended another Southern Slam Quad Rugby Tournament.  The difference this year was that our Brooks team was split up — all the teams were made up of various other teams. I have a hard enough time following the action as it is. I missed the color-coordinated uniforms clearly identifying who to root for, but I hear it’s more fun for the athletes — meeting and playing with different people from all over. If you’ve never checked out the sport – you don’t know what you’re missing. Take a look at my post from last year, complete with photos and video. I’ve also changed the title from Tough Guys to Tough Stuff in honor of the couple ponytails I saw in there swinging.

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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.

Putting the Able in Disabled

DSC_1212 I went rock climbing last weekend.

I can just see my friend Mary’s face, open-mouthed in disbelief. And it is unbelievable in a funny sort of way. My mom burst out laughing when I told her I was going. “Of course you are,” she said. Because so far, (mostly with Brooks) I’ve played tennis, billiards and power soccer. I’ve waterskied, snow skied, surfed, bowled and ridden a horse —  all since I’ve been in the wheelchair. Now I can add rock climbing to the list.

It’s not bravery, though Mary would disagree. (And I suppose next to her, I am brave. Sorry, Mary.) But really, these adaptive sports have gear that keep you much safer than you’d be if you were doing the real thing. And I wasn’t hanging off a cliff. We’re in Florida, after all. It was a rock climbing gym.

But I do have a whole new respect for rock climbers — indoors or out. In addition to revealing just how out of shape I am, out of my safety harness, it looked scary! I didn’t reach for hand or footholds, (I never could’ve managed that) but many people in the group did. I was in a comfortable swing compared to these daredevils. Look at this picture to really get the idea. That’s 45 feet up!130720_0004

It was all part of a special rock climbing clinic with Mark Wellman, two-time Paralympian and the first paraplegic to climb the faces of El Capitan and Half Dome in Yosemite National Park. The night before we hit the climbing gym, we heard Mark’s story of the rock climbing accident that left him paralyzed and his inspiring road to recovery. Then we watched his film, Beyond Barriers, in which various disabled athletes take part in some pretty extreme sports. Imagine watching three disabled mountain climbers, one of them blind! There was also a girl born with just one leg, who surfed standing up on a customized piece of PVC pipe. There was a paraplegic handglider, paraplegic diver and a quadriplegic sailor who operated his special sailboat with just a mouth stick! All further proof to me that there’s a spirit inside some that just won’t be quieted. That most determined and adventurous people are that way regardless of what happens to them. It’s attitude not circumstance. They’ll find a way.

In truth, I wished the event and the message could’ve been a little more inclusive. Most quadriplegics could not attend because they lack grip in the hands and fingers. I don’t know the particulars of climbing equipment and it must have been considered, but most other adaptive sports have gloves that attach a person’s hands to any bar necessary. And watching amazing athletes may not reach those of us who are far from athletic. Personally, I’d rather inspire someone just to get off the couch, get out of the house or make a new friend!

IMG_0563
With Mark Wellman

But that’s the great thing about the Brooks Program. There’s something for everyone, from extreme sports to eating fries and gabbing at the local bowling alley. In the end, it’s about breaking the mold and challenging the stereotype of what a disabled person can and can’t do. Plus, I get to watch people’s faces when I tell them I went rock climbing. Priceless.

The Challenge

130309_0005This past Saturday (yesterday to many of you) was The Brooks Rehabilitation Challenge Mile, one of the many smaller “runs” hosted alongside the Gate River Run. There are several reasons why I like participating in the event (this was my second year — read last year’s post here).

Firstly, I like hanging with this group of people because I’m free to be myself. People laugh with me instead of making a huge deal out of it when I pick up a little speed on an unseen decline. It’s nothing here to have muffin crumbs on my face or be seen peeling a banana with my teeth.130309_0008

130309_0004But more importantly, this event reminds me that it’s about encouragement, not competition. I couldn’t help but notice this as I watched people of all abilities cross the finish line. When one gentleman, who had made it most of the way in his wheelchair rose to walk the last several feet, the crowd cheered his name for what felt like a good five minutes. I think most of us would rather have our ability back, but it’s certainly true that when the challenge is tougher, the victory is sweeter.

Calling All Angels

Volunteer Angels

*

I’ve seen and met angels wearing the disguise of ordinary people living ordinary lives.

~Tracy Chapman

*

It’s waterskiing time again! Please enjoy the great video put together for Brooks by John Lipscomb, check out Channel 4’s news coverage or read my blog from last year. (I should probably mention that the girl in the tiara is Ashley Heath, Ms. Wheelchair Florida — just because tiaras and waterskiing don’t normally go together.)

What struck me this year was the enormous number of volunteers it took to make this happen. A great many people took their weekend and did something for others instead of something for themselves. So, I’ve been thinking a lot about those that need help and those that give it. I guess it takes both to make the world go round.

But, here’s a secret. I’m kind of selfish. I honestly can’t say if, before the wheelchair, I would have spent the weekend hauling gear and pushing wheelchairs or curled up on the couch with a good book.

So, if you’re one of the helpers of this world (and you know who you are,) then I commend you and thank you. If you’re not, maybe it’s not too late. Or if you’re like me and you’ve realized it’s too late to be of much help now, then what a marvelous lesson we’ve learned for next time.

We make a living by what we get, but we make a life by what we give.

~Winston Churchill

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

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.

Big Rocks First

I would like to dispel this notion that disabled people sit around all day and watch daytime television. When I worked full-time, I would long for a sick day to sleep late, stay in my pajamas and watch The Price Is Right. I still have that dream. Just because I don’t receive a paycheck doesn’t mean I don’t get stressed or have a problem with time management. I do. Okay, maybe I watch an episode or two of HGTV’s House Hunters over lunch, but that’s it. I wake at 5 a.m., “quit” at 5 p.m. and still feel I don’t have enough hours in the day or days in the week.

The problem became apparent in the last few weeks as I tried to juggle writing a weekly blog, finishing a book and walking Frankie every morning and evening. And let’s not forget that when you’re disabled, everything takes longer. Getting a shower, fixing a meal, transferring to my power chair with an excited pooch at my feet. Everything. I can spend a half-hour pecking out just one email!

So, I started researching organization and was introduced to the concept of “big rocks”  from Stephen R. Covey. He wrote the widely popular The Seven Habits of Highly Effective People, first published in 1989. That’s right — 1989. And I’m just now learning about it. Ironic that I never felt the need to be even slightly effective before becoming disabled. (I’d argue that being productive and successful matter more when you’re doing something you love, but that seems like another post.)

Anyway, the idea is to prioritize. Your big rocks are what’s important to you in the overall scheme of things. The big picture. It’s personal. Maybe it’s time spent with family. Maybe it’s giving back — a charity or other service. The point is to get the big rocks in there and not squander away your time on hold with the cable company or reading email jokes.

One of the concepts I picked up during my web surfing is this: you have to follow your compass before you watch the clock. In other words, before you can manage your time, you need to know where you’re going, your priorities and goals. Instead of focusing on what’s urgent, learn what’s important to you. Where you are headed is more important than how fast you are going. Think of the Titanic.  

I thought about my big rocks and came up with three non-negotiables that I simply must make time for. Frankie (if you’ve read some prior posts, you know how much I get out of his walks,) my health (maintaining my current mobility is crucial to my continuing to live independently) and my writing (my passion and purpose.)

As it turned out, that covered two of the seven habits. I don’t know the others yet, so I’m only mildly effective. Habit 3 is putting first things first or prioritizing. In Habit 7, you focus on finding balance between the physical, mental, emotional and spiritual areas of your life. This jives with my big rocks. Physically, I’m taking care of my health and exercise. My mental rock is my writing. And Frankie is a two-for. I cover my emotional needs by having social and meaningful interactions with others (just today I ditched my planned routine and went down to the local coffee shop with him at the invitation of a friend.) I think I successfully cover the spiritual side of things when I commune with nature on our walks and meditate seaside.

What are your big rocks? Think about your compass. And next week, I’ll get into the nitty-gritty of the clock. For now, I’m running out of time to post this.

For Need of a Dog

"My pain in the butt:" Photo by Bruce Macfarlane

Every disabled person should own a dog. I can hear friends laughing now because, in the past, I’ve been such a die hard cat person. Frankie has changed all that.

Don’t get me wrong. I still think dogs are a pain in the butt. They need to be entertained more than cats. They need to be exercised. Let out. They’re more destructive. More vacuum-like when it comes to food. They’re louder. Messier. More demanding. You can’t take a three-day weekend with ease. The list goes on and on.

In other words, having Frankie isn’t something I would’ve ever signed up for. Sometimes, the universe doesn’t give you what you want, it gives you what you need.

I’ve realized how caring for Frankie has expanded my world. I know a lot more people. Particularly in my neighborhood. It makes life more enjoyable. Imagine being out and about and everyone waves or nods. Even if I’m not actually with Frankie. Just yesterday, I was at the grocery store when a man said, “It just seems wrong, seeing you without your little dog.” It’s like the Cheers song, (yes, I know I’m dating myself,) but you do want to be where everybody knows your name. Okay, so most of these neighbors don’t actually know my name. The other day walking him, a man hollered out his window, “Hey, Frankie!” to which I waved and yelled, “Hi!”

"Not Holing up:" Michele walks me and Frankie

I’m outside a lot more. I don’t “isolate” myself (as my mother would say.) Without twice daily dog walks, I might be holed up for days on end with my computer and my cat. Instead, the tires on my power chair are actually bald. I need new tires. I hope I don’t have to brake suddenly.

Frankie also bridges the gap between the disabled and the able-bodied. I’m probably a lot more approachable in my wheelchair with him by my side. I’m just guessing here, but it’s reasonable to assume that I’m the only disabled person many of my neighbors have ever talked to. It’s good for everyone. Able-bodied folks can gain awareness and I gain a little self-esteem. For those five minutes discussing the weather or comparing flea medication, I’m not so different.

And service dogs? The benefits seem endless. In fact, I feel guilty just writing it so shhh, but when Frankie … umm… you know… gets to eat people food and run around leash free, I want to get a service dog. Of course, there’s nothing funny about a perfectly behaved dog is there? Maybe I’ll stick to inspirational and endearing misbehavers.

Jack of All Sports … Master of None

On Victory Lake: Photo by John Lipscomb

“So,” Ann asked me. “Which side of your body is paralyzed?”

“Neither,” I answered. I’d told her I’d had a stroke. It was a natural assumption. “But it’s the right side that …” I hesitated.

“Sucks,” she filled in.

“Well no,” I started to say. Then, “Yeah — sucks.” I smiled. I liked her. Therapists (always able-bodied) were constantly telling you not to call one side the “bad” side. Positive thinking and manifestation and all that crap. Here was a straight shooter.

Also in a wheelchair, Ann O’Brine-Satterfield founded U Can Ski 2 over 20 years ago. She’d won six national and two world championships as a disabled water skier. I’d found out about the free “learn to ski” clinic as I had most of my adaptive adventures, through the Brooks Adaptive Sports and Recreation Program.

No stranger to the program or the world of adaptive sports, the list of activities I’ve tried is long: wheelchair tennis, power soccer, rowing, surfing, snow skiing, hand cycling, bowling, billiards, aquatics, horseback riding and now water skiing. I’m bad at all of them. Or as Ann would say, I suck.

Alice Krauss, the director of the Brooks Program, initially suggested I try wheelchair tennis. I have no idea why. My coordination is so poor, I can’t even put my finger to my nose without poking myself in the eye, let alone connect a racket to a ball. In her defense, we hadn’t met yet. I’m sure I sounded quite capable over the phone. I mean, aside from the slur and all. After we’d met, she wasn’t exactly suggesting I sign up for archery. (Who would’ve thought there is adaptive archery?) I know better. I have no business anywhere near a bow and arrow.

Truthfully, I wasn’t half bad at horseback riding. I had dreams of the Paralympics before I learned the competition is in English Dressage. That means both hands hold the reins. I was riding Western with just my left hand. I’m sure they have adaptive equipment to make it work, (heck, I’ve seen a girl riding with no legs!) but I was already trekking to Georgia just to find a Western adaptive teacher. In the end, the time and expense weren’t worth it to me.

I thought I’d found my sport when I was introduced to power soccer. It doesn’t require contact of your body with the ball at all! Power wheelchairs are outfitted with metal cages and driven up and down an indoor court like bumper cars. Except players are supposed to hit the ball, not each other. I was bad at that too. My double vision got in the way.

Adaptive equipment: Photo by Alice Krauss

Yet here I was again, hanging off the back of a boat as one of the “side skiers” counted down from three for the driver. Since it was my first time, I didn’t really have to do anything.  I didn’t even have to hang on to the rope, though I can progress to that later.  The rope attached directly to the sit ski I was in. It reminded me a lot of snow skiing, where even the slightest turn of your head guides the ski.

I’m not sure why I keep trying all these sports. Maybe, I’m more competitive than I like to admit. Maybe, I’m looking for something physical to be good at again. Or maybe, I like being part of a group that redefines what it means to be an athlete. Either way, time spent dreaming about a new goal, even if it’s just an hour, can’t be time misspent. Team USA Water Ski, here I come.

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