Wheelchairs + Tennis = Life Narratives #1 Guillain-Barré Syndrome and the Cajun Classic

Well, this is the inaugural post of my blog, which, as my “About” page indicates, is about ungrounding the “subtext” of life, our life narratives that lie beneath what we see.

I begin by asking: How do you cope with the trauma of losing your body? One day you effortlessly get dressed and go out for a morning jog, not for a second thinking about how exquisitely your body’s brain, nerves, and muscles work together perfectly to propel you forward. That afternoon, or a day later, or perhaps a week later, you’re paralyzed for the rest of your life, some or most of your body dead to you.

It could’ve happened when your spinal cord was crushed in a brutal motorcycle accident. In my case, I had the flu in April 1980, and a week later I was on life support fighting for my life. Diagnosis: Guillain-Barré Syndrome, a rare auto-immune illness that betrays you and attacks your body. I was hospitalized for nearly a year and in rehabilitation for another two. The syndrome condemned me to a life as a quadriplegic. I was just twenty three years old, eagerly awaiting my first year of studies at Georgetown University Law Center.

This post is the first chapter of a book I’ve written, a book that tries to answer as best I can the question I’ve posed. The book explores my life’s narrative as a “person with disabilities” via my encounter decades later with the world of wheelchair tennis. After retiring early from the University of Iowa College of Law in 2014, I threw myself into the sport and competed in nine wheelchair tennis tournaments throughout the country, knowing very little about how to play the sport—I was clueless. In the course of doing so, I met remarkable athletes with compelling life narratives marked by the trauma of losing what was once a perfectly functioning body, or the trauma of facing life with a crippling birth condition. Through my posts, you’ll see how seemingly separate life narratives intersect in ways that create life-affirming possibilities.

Put another way, in the posts you’ll read not only about individual narratives, but also, and perhaps more importantly, about the creation of communities of shared narratives that help us as individuals navigate through life.

Although this blog will explore all sorts of life narratives, the initial posts of my book will deal with persons with disabilities. Sharing it with you all has become incredibly important for me because of the hate that’s been unleashed against already marginalized persons in this country, with a U.S. President that openly mocked people with disabilities. Don’t worry, my blog won’t be an ongoing diatribe against those who want to silence us. This will be an affirmative blog.

Here we go. I hope you enjoy the ride.

Chapter One

A Sleepless Night in Alexandria

I turned over in my bed and looked at the clock. 1 a.m.  I went to bed early to make sure I wouldn’t arrive in Baton Rouge dragged out the day before my play would start in the wheelchair tennis tournament—March 26, 2015. I was on my way to the Cajun Classic. A big one, part of the International Tennis Federation’s UNIQLO (a global retail clothing chain) 2015 Wheelchair Tennis Tour.

“Go back to sleep, you idiot,” I said to myself as I turned away from the clock. The idiot said okay. For another hour. That was the best I could do, one hour at a time. When I turned to the clock at 4 a.m., I decided that was enough. My flight wouldn’t take off from D.C.’s Reagan National Airport until 10:20 that morning. So what. I couldn’t sleep. I rolled out of bed as I’ve always done in my adult life: I used my arms to twist my torso off the bed and put my legs onto the floor. Then I locked my knees and used momentum to stand erect. My leg braces were sitting in my Birkenstock sandals next to the old but very sturdy school chair I’ve used for a very long time to get dressed. “Can’t sleep, huh?” they said to me. “Leave me alone.”

I never put my braces on when I get up. In fact, I usually don’t wear them when I’m in my apartment. They’re heavy and made of thick plastic that run below my feet and up the back of my legs just below my knees—“below-the-knee orthotics.” I know I’ll have to wear the clunkers all day, using a cane now and then when I walk, so I give myself a break. No one’s looking anyway, right? Yeah, I’m self-conscious about my pencil-thin legs, the mark of paralysis below my knees and muscle atrophy above them. I avoid mirrors. Unless I’m in the gym surrounded by them, in which case I pose vainly and pretend I’m really ripped. Everybody else does it.

I walked to the kitchen with my legs locked and my feet dragging. I drank a glass of water, holding the glass with both hands. They’re pretty much paralyzed and there’s lots of atrophy. I lost the opposable thumb thing and I can’t spread my fingers. I can grip stuff but the hold is really weak. Weakness or paralysis in all four limbs = I’m a quadriplegic, aka “quad.” Thanks to Guillain-Barré Syndrome (GBS).

******

It was April 1980. Indiana University’s Bloomington campus is lovely in the spring, the blooming dogwood trees contrasting almost magically with the lush green carpets of grass. It’s a season of anticipation in many ways. In my case the anticipation was graduating from IU with a double major in music and history and, with Pam, my ex (and now friend) whom I had married two years earlier, moving to Washington, D.C. to start law school in the fall at Georgetown University Law Center. Pam, who had completed her Masters in music, looked forward to beginning her career as a harpist in the nation’s capital. Very cool. Lots of anticipation.

And then I got the flu, a pretty bad case of it. No, I would say it was a really bad case, with everything from ferocious aches and sky high fevers to  . . . well, you can guess the rest of it. Ten days later, on April 11, I woke up in the small one-bedroom house that Pam and I rented in the outskirts of Bloomington. I rolled out of bed at 5 a.m. to get ready for the day shift at a fast food joint in town. As soon as I stood up, I felt aches in my arms and legs. Must have slept wrong, I thought. Millions of people wake up the same way and go on their way without thinking much of it. “I’ll sleep better tonight.”

After I chugged a cup of lukewarm coffee and took a shower, I slipped into my jeans and reached for the zipper. Both of my hands were tingly. And I couldn’t grasp my zipper. My hands just wouldn’t do something as simple as that. Somehow I finally conquered the zipper and shrugged. I must’ve pinched a nerve or something. It’ll go away, I thought. Happens to everybody, right?

Pam drove me to work. It was grill duty for me that morning at the fast food joint I worked at, which meant flipping lots of pancakes. When the doors opened I had already prepared a bunch of them, but I started to notice that the spatula was getting heavier and heavier. Until I could barely flip the pancakes. What the hell! I called Pam and told her what was going on. We agreed it was time for me to go to Bloomington Hospital’s emergency room. When we arrived, my left foot felt tingly and weak. I had to drag it along with me, like you would pull a reluctant dog on a walk.

Once at the ER, the triage nurse recorded my symptoms and took my vitals while Pam took care of the insurance paperwork. I hadn’t been to an emergency room before then. The resuscitation equipment in the room they put us in freaked me out. It wasn’t long before a doctor came in to look at me. He didn’t spend much time with me after I explained what had happened.

“Have you had the flu, recently?” he asked.

“Well, yes, yes I have. About a week ago.”

“I’ll be back.”

He didn’t come back. I tried to stay calm, but inside I was losing control. “What’s going on?” We sat in the room for a long time. An eternity? Sure felt like it. Pam and I didn’t talk much. We just waited, staring blankly at the walls.

Then he walked in. Dr. Wisen. He was tall, over six feet, and walked with a slight limp to his left. His forehead’s deep creases that hovered over penetrating black eyes made him look really, really serious. No smile. He just stared at me, then glanced at Pam. Finally he introduced himself. His bedside manner sucked. But I would later learn that neurologists are just that way. Brainy and emotionless. Not the partying type.

I repeated what had happened to me that morning. Then he started probing. He asked me to hold my arms straight out and not let him push them down. He pushed them down with what appeared to be laughably little effort. He had me do other resistance exercises with my arms and shoulders. Weak. Then he asked me to squeeze his fingers. Not much there. He asked me to contort my face in various ways. My smile was disappearing. He used his hammer to test for reflexes. Very little. Then came the moment when I knew I was in deep trouble. He asked me to hold my arms straight out and stand up. I couldn’t. Jesus Christ! Wisen studied me for the longest time, glancing at Pam as if to say, “Prepare yourself.” Both of us were crazy scared. Pam thought I was having a stroke.

“We’re going to do a spinal tap,” he said. A what? Somehow I knew he wasn’t just going to tap his finger on my back. He left the room abruptly. Minutes later he returned with a nurse. He was holding a huge needle. “Where’s that going?” By that time I was in a hospital gown. They put me on the bed in the room and told me to get into a tuck position with the help of the nurse. After they applied local anesthetic, I felt frightening pressure at the base of my spinal cord as he pushed in the needle. He was collecting cerebrospinal fluid that surrounds the spinal cord and brain to see if the fluid contained more protein than normal. It did.

“I’m almost certain you have Guillain-Barré Syndrome.” “Gill—what?” He explained that GBS is an autoimmune disorder where the cells of the immune system get confused and instead of attacking invading organisms, they start attacking the body itself, specifically the myelin sheath, which insulates many peripheral nerves. Without the sheath’s protection, the nerves can’t communicate efficiently with the rest of the body. Hence weakness. Hence, in many cases, paralysis. Since the arms and legs are the farthest from the brain, they’re the first to go. From there the weakness and/or paralysis may travel all the way up, even to the eyelids.

Then it’s a waiting game. The goal of any treatment is to keep you alive until the myelin sheath repairs itself. No one knows how long that will take. It could take a few weeks. Or a few years. Back then, the standard treatment was to give the patient steroids to calm down the inflammation of the peripheral nerves. But that treatment didn’t do much, if anything. Studies now show that treating GBS patients with steroids is ineffective and in some cases can harm the patient.

Today, there are two treatments that appear to lessen the severity of the illness and speed recovery. One is “plasmapheresis,” a procedure that extracts a patient’s plasma and returns only the red and white blood cells to the body, which then creates more plasma. No one is certain why it works, but maybe it has something to do with removing the antibodies. The second treatment is high-dose immunoglobulin treatment where the doctor injects high doses of protein into the patient with the goal of lessening the immune system’s attack on the body.

Today’s treatments were considered experimental in 1980. So what? Looking back, I would’ve gladly become a guinea pig for the experiment.

No one really knows what causes GBS—hence it’s a “syndrome,” a collection of a patient’s symptoms and a doctor’s observations. The illness got national attention in 1976, when an increase in GBS was recorded after people were vaccinated for the swine flu. In most cases, people contract the illness after they’ve had a virus involving diarrhea, the respiratory tract, or the flu. The illness is pretty rare, affecting at most 6000 people per year on average. But if you start asking your friends about it, there’s a good likelihood that they know someone who’s had it.  And maybe that person has recovered 100%, or more likely has some residual paralysis or weakness, or maybe he’s dead.

It wasn’t long before I was taking a ride in a hospital bed. Ultimate destination: the intensive care unit. I should’ve made the effort to appreciate the beauty of the budding trees and flowers on my way to the hospital.

Because I wouldn’t see the outside of the hospital for nearly half a year.

******

After I chugged the water, with lots of it spilling on the floor—that’s just me being a slob so don’t pity me—I took a bite of a banana, and turned on the Keurig. The shower started bringing me back to life. I don’t have a walk-in shower in my apartment. But the apartment management kindly installed handle bars for me. I use my upper-body strength to hoist myself in and out of the shower. Actually, I use my upper-body strength for just about everything I do.

From the shower, I shuffled my way to the chair in the bedroom. I had already set out what I would wear for the trip: white ankle socks, underwear, black sports pants, a black sports shirt I bought for the tournament, and my Georgetown Law sweatshirt (class of 1986). I was on autopilot, having done my dressing ritual for decades. While sitting, I slipped my underwear on, then came the pants, then the socks, then the shirt, then the sweatshirt. While still sitting, I put my braces on and tightened my sandals. I wear sandals year round because my braces don’t fit into shoes. When I lived in Iowa I wore hunter’s socks in the winter. On more occasions that I care to remember, I would get a remark like, “Son, do you know what part of the world you’re in?” I would laugh heartily and then curse the person out under my breath.

Once I had everything on, I pushed myself up into a standing position and did lots of pulling. On rare occasions I would mess up my ritual. Like I would get up from the chair and realize I forgot the underwear. Then I would have to undress and start again. At least once, I stood up and realized I had put my underwear over my pants. I could’ve made a fashion statement with it, but I didn’t have the courage or the stupidity to do it.

It was a little after 6 a.m. when I sat down at the kitchen table with my coffee and laptop. As I sipped on my mug of Colombian medium roast and ate the rest of the banana, I read about Andreas Lubitz, the co-pilot on a Germanwings flight who locked himself in the cockpit and flew the plane into the French Alps, killing all aboard. What a way to start my trip. Death by pilot. That’s just great. Although I’ve flown all over the world, I still dread even the slightest turbulence. My worst experience was on a puddle jumper from D.C. to New York City on law firm business. It was a stormy spring morning and had I been able to, I would’ve scrapped the flight and taken the train. Oh well. The descent into La Guardia was so turbulent that everyone applauded when the plane touched down on the tarmac—one of those. What really irritated me, and still irritates me to this day, was a guy who slept through it all. How is that possible? I hated him, if only briefly.

After that wonderfully pleasant reading, I cleaned the kitchen, living room, dining room, bathroom, and bedroom, everything from mopping to cleaning any stains I discovered, even on the walls. I thought about vacuuming but having the management’s swat team blow my door open and tase me for the noise was not high on my list that morning. The coffee would give me enough buzz.

My suitcase was sitting atop my dresser. It’s not a carry-on. I used to use them when I travelled for Arnold & Porter, a law firm in Washington, D.C. I hated them—the carry-on, not the law firm. They were too heavy and I couldn’t lift them into the overhead compartments. It looks a little lame flailing a suitcase against a plane’s overhead compartment. I stopped using them when I joined the University of Iowa College of Law in 1990. My only carry-on was a backpack loaded with my laptop and books.

I threw everything but the kitchen sink into the suitcase. There are some people who pride themselves in traveling very light—hence the carry-ons. I just can’t do that. So I packed a store’s worth of sweatpants, sports shirts, underwear, and socks, enough to last me several weeks, although the tournament was only a few days long. By the time I threw in my toiletries, meds, and tape, the suitcase could barely close.

Tape, you ask? Sports tape, about ten rolls of the stuff. It’s not a fetish, not really. I can still remember the dinner party at an A&P partner’s place one beautiful summer evening in D.C. Like most partners, he had the type of house that bespoke an equity partner in Big Law. He had an immaculate tennis court behind the house, and he invited his guests to play. I’m self-conscious about a lot of things but not about playing tennis. Sure, why not? I’ll play. I borrowed a racquet and volunteered to play doubles, my partner a very nice associate that I befriended at the law firm. She could play. Me, I staggered from one point to another, my braces never failing me. When a ball came my way I took a swing at it and invariably the racquet flew out of my atrophied hand. My partner kindly retrieved my racquet time after time. When we finished, she approached me and suggested, in all sincerity, that I take up swimming. I’m a pretty good swimmer. The water’s buoyancy helps me move through the water with an elegance that my tennis game lacked. “Thanks for that wonderful but humiliating suggestion!” I said to myself.

The sports tape is my way of responding many years later, “Sorry about the flying racquet. It won’t happen again. Shall we play another game? I haven’t fallen yet.” For many quads, using tape to secure the hand to the racquet is very common. Initially I went to an occupational therapist to try to fashion a hand brace that would work for me. She tried repeatedly to come up with different molds but nothing worked. Then Kevin Nebergall, a tennis pro certified in wheelchair tennis, sent me a link to a YouTube video in which David Wagner, currently the number one quad tennis player in the world, demonstrates how he tapes his hand to the racquet. I followed his instructions and it worked, at least initially.

So here’s how I first did it: First, I took the racquet handle and taped it sticky side out. That prevented my hand—I’m a lefty–from shifting around as I play. Then I carefully placed my hand on the racquet to get my semi-western grip (try picking the racquet up from the floor). I used my right hand to help move my fingers into the right positions. Once I was sure I had the right grip—and that’s key because the wrong grip, however slight, can ruin my game, I took the roll of tape and started taping my hand to the racquet, starting at the wrist. With every round of tape, I could feel the grip become more secure on the handle. I didn’t wrap the tape tightly because a really tight wrapping can cause pain and skin breakdowns. When I was done, my whole hand was covered with tape. But I didn’t stop there. In my last step I turned the tape sticky side out and wrapped the tape around the base of my fist. This helped me push and pull on the wheel’s rim. And to answer your question, yes, I used nearly an entire roll of tape when all was said and done. And, no, I don’t yet own stock in the company.

******

After I was finished with my suitcase, I checked my tennis bag. My Wilson Juice 108, a really light-weight racquet. Check. My back brace to support my back in the wheelchair. Check. My right-hand batter’s baseball glove to give me the tackiness I needed to grip my right rim. Check. My Velcro straps to strap me into the wheelchair. Check. More sports tape. Check. My e-reader. Check. A bag of nuts and energy bars. Check.  My meds. Check.

I left my ninth-floor apartment in Alexandria, Virginia at 7:30 a.m. The drive to Reagan would take me fifteen minutes, if that. The garage underneath the apartment was pretty chilly. But I just wore a sports shirt, knowing that I was going to Cajun country, where even at that time of year it could get pretty toasty and humid.

I unlocked my silver Corolla and threw my suitcase and tennis bag in the car. I opened the back door to make sure my wheelchair was good to go. It’s an Invacare Top End T5 Tennis Elite. The frame was in the back seat, the tires in the trunk. It’s money, a sports wheelchair that moves like silk on the tennis court. I’m not talking about a hospital wheelchair, which I spent lots of years in as I recovered from GBS. They’re heavy steel-framed workhorses, weighing forty-five to fifty-five pounds and they fold for storage. Before I had my sports chair, I tried playing tennis in that type of chair and it was . . . well . . . painful.

Sports wheelchairs came on the scene in the 1970s, manufactured by Quickie. They became very popular for wheelchair basketball in the 1980s, which is played with a standard ten-foot height rim. In fact, many athletes have played basketball before taking up tennis. Not me. I couldn’t perfect the slam dunk. So frustrating. Even before basketball and tennis, athletes used sports chairs for racing and long-distance marathons. Top End  makes a three wheeler – 4 ½ feet long, with one wheel in front and two in the back, designed for straight-line dynamics with the athlete in a tuck.

When I bought my Top End, it was like buying a tailored suit, not something off the rack. The goal is to make the sports chair part of the athlete, just as legs are part of the athlete who doesn’t play in a wheelchair. How does that happen? Let’s start with the weight. The chair weighs a mere twenty-four pounds. The frame is made of aluminum—some frames are titanium or chromium-molybdenum. The light weight allows the tennis athlete to explode from a stationary position and move quickly around the court. The height of the backrest and its composition are designed to best support the athlete’s upper body. You have to pick the right seat cushion to prevent sores from developing and otherwise to provide stability.

Then comes “camber,” that is, the extent to which the top of the wheels lean in—think of the forward- and back-slash / \.  Hospital wheelchairs have zero degrees camber. But tennis wheel chairs can have a camber of up to twenty degrees (mine is at eighteen), a pretty severe back slash where the bottom of the wheels really flare out. Camber might look strange, but it’s really important because it provides lateral stability. Many tennis players have much more upper-body than lower-body weight. More camber provides the athlete with more stability as she maneuvers, including turning the chair on the court. And we’re not talking about slow, leisurely turns while sipping on a mojito. The turns can be head-snapping.  Not really conducive to drinking cocktails while playing—leave that to baseball players, they have nothing else to do in the ball park most of the time.

Tennis wheelchairs will have two casters in the front and one in back. They protect the athlete as she reaches forward or backward for a ball. Also adding to stability is what’s called the “seat dump”—i.e., the extent to which the front edge of the seat is higher than the back edge. The angle puts the pelvis and lower back in a secure position. It also helps the player grasp the rims. To make propulsion and turning even more ferocious, the knees are hyper flexed more that ninety degrees and the footrest is tucked under the chair.

Put on the waist strap and any other straps the athlete needs—I need straps to secure my feet to the footrest—and it’s time to rock! Bring it on! Fear me!

******

Once I was sure that I had everything, I pulled out of the garage and headed for Reagan. The traffic on 395 was pretty light at that time in the morning. Before I knew it I was pulling up to the Delta terminal. It was busy, with cars pulling in and out in a chaotic rhythm. I pulled up to the sky caps. They had their hands full. I waited patiently for one of them to approach my car.

“Yes, sir.”

“I have a sports wheelchair I want to check.”

“A what?”

“A wheelchair—for sports. Tennis, really.”

I think he thought I was on crack or something.

“Show me what you got.”

I got out of the car and pulled the frame out of the back and tires out of the trunk.

“You want to check that, son?”

“Well, that’s what he told me to do.”

“Who?”

“My friend.”

“Where’re you going?”

“Baton Rouge. Louisiana. You know. The Deep South.”

“Get back into the car and wait for me.”

I was more than happy to oblige—and duck under the dashboard. After about ten minutes, the gentleman returned.

“It’s all taken care of.”

I pulled out a $5 bill and handed it to him.

“Is that enough?”

He looked at me with great pity.

You see, I was going to my very first wheelchair tennis tournament. I had bought the chair only months earlier after trying to play tennis in a wheelchair for the first time in a program called Sportability in Cedar Rapids, Iowa.  The friend I mentioned to the sky cap was Jayden Barrett, who ran the program. We met once a week. The program provided everything for each session free of charge: a sports wheelchair, a tennis racquet, and a pro coach, Kevin Nebergall. I was hooked after the first session.

But here’s the thing: I attended only a handful of sessions before I bought my own tennis wheelchair, retired early from the University of Iowa, and moved to Alexandria. The sessions were super, but in the few I attended I never played a full game of wheelchair tennis, let alone a set or a match. When I bought my wheelchair, I had no idea how to transport it when flying. Jayden assured me the people at the airport would take care of me. I was clueless. And I picked one of the world’s most competitive tournaments to attend.

Why was I doing this? Because I’m an idiot who likes to be flattened on the tennis court? Maybe. But maybe it was about something else, something that would only reveal itself through the journey I was about to embark upon into the world of wheelchair tennis, a journey that would take me to tournaments over the course of 2015.  A journey that actually began on beautiful spring day in April, 1980.

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