To say you’re going to lose your way of life is to say you’re going to lose what helps you make sense of the world. Think about it. “My way.” The “my” is the individual who uses his or her agency to construct a method, an algorithm of sorts, to make it from morning to night and achieve something. If I do this, this, and that, I’ll achieve what I want. If I (1) get up, (2) take a shower and get dressed, (3) eat breakfast to give me energy for the day, (4) take the bus to school, and (5) go to classes and pay attention, I’ll achieve the goal of learning something.

There’s also the “way” of “my way.” That’s everything else that helps the individual execute the algorithm. You need a home in which to sleep well, someone to produce the food for you and get it to your plate, a public or private mode of transportation, a school and teachers.

So when you say you’re going to lose your way of life, at least looking at it positively (a way of life can be destructive), you stand to lose everything that helps you become a  human being, that helps you conceptualize a life  worth living, that helps you see beauty in life. It’s crazy scary, the kind of scary that sucks the air out of your lungs in an instant, that makes your heart skip a beat or two. You fear. You freeze. Your sense of agency disappears. What are you going to do, especially if you’re a kid?

Especially if you’re a kid like Nick with his severe physical limitations? To really get how scary it is, you have to get “granular,” you have to break down in much more detail each part of the algorithm. I’m a quad like Nick but I don’t come close to having his limitations. Earlier in the book, I described a component of my algorithm, getting dressed. I free fall into a chair. Then comes the underwear (sorry, yeah, TMI). Then the pants. Then my socks, which alone takes up to five minutes. Then strapping on each leg brace. Then putting my footwear over the brace. Then putting my shirt on and using what’s called a “buttoner” to button my shirt. Then standing to pull everything up and finishing that part of the algorithm. This could take up to twenty-five minutes or maybe more. And if I stand up and realize I put on my underwear backwards? Start over. I feel really stupid when that happens.

Now can you imagine how much harder it is for Nick, a guy who can’t touch his feet with his hands? How incredibly granular each part of his algorithm is? In Nick’s case, it was his dad that took every opportunity to push his son towards as much independence as possible, to help Nick construct his “way of life.” One of Nick’s vivid memories, one that he has shared with many people, was when as a kid, about four or five years old, he woke up one summer morning excited that he would get to swim later in the day. He called his dad into the bedroom.

“Are you ready for a swim, Nicholas?”

“Heck, yeah, dad!”

“Alright, then.” His dad tossed Nick’s swim suit at him, walked out of the room, and closed the door.

“What? Dad! . . .Dad!” No answer.

Nick laid there, not knowing what to do. He cried. He screamed. The door remained closed. Nick eventually realized that if he wanted to go swimming, he would have to put on the swim suit himself.  He wrestled and wiggled for what seemed an eternity. He eventually got it on.

“Dad! I got it on!” Nick shouted triumphantly. His dad walked in, extremely proud of his son but intent on not making the situation a big deal.

“Okay, then, let’s go.”

My.

Way.

Of.

Life.

 

My second match was against Grady Landrum, who along with Nick Taylor organized the camp/tournament.  He welcomed me with a warm smile and a twinkle in his eyes that matched his mischievous wit. The match was in the morning on a shaded court. This wasn’t coincidental. Unlike me, Grady’s body can’t produce something that’s vital on hot days, especially when you’re exerting yourself. Because of his spinal cord break, he can’t sweat. Heat without sweat is deadly. That’s why Grady and many other quads spray themselves a lot with water during a match.

But why is Grady a quad? Before I tell you why, let’s talk about the concept of “blame.” When something bad happens, we want to point the finger of blame at someone or something. When we do that we may or may not go moral. When I became disabled because of Guillain-Barré Syndrome, I could point the finger of blame at GBS. It was to blame for making me a quadriplegic. It’s just a statement about causation. I did nothing morally “wrong.” I didn’t break any social norms. So saying something about my plight that might include the words “you shouldn’t have . . .” would seem, well, inappropriate. And stupid. I like stupid, so scratch inappropriate.

But what if I had been drinking heavily for some time, which lowered my immune system, which, in turn, made me vulnerable to GBS. Then we might start getting moral. Unlike saying GBS is to blame, we might point the finger at me. I’m sort of to blame for my disability. As a moral agent, I can deliberate and make choices. I chose to drink heavily. So when I drank heavily, I did something wrong. I chose to violate a social norm that looks down on heavy drinking. Then you might you might say, probably just to yourself, “That’s terrible what happened to you, but you shouldn’t have been drinking heavily.” What was that? You would never say that, even to yourself? You’re never judgmental? Are you some sort of monk or something? C’mon!

Let’s get back to Grady. Flash back to December 11, 1971 in Atlanta, Georgia. Grady was a 17-year-old senior in high school.  He went out with his buddies that night and had a few beers. Maybe more than a few. It was late when he drove his two-door 1970 Dotson station wagon home with his friend, Jake.  Speed: 100 miles an hour. Do you see it coming? Right. He lost control of the car. Grady’s door flew off and he went flying with it. “Snap” went his neck. Jake walked away from the accident. Grady was rushed to a nearby hospital.

He was unconscious for an entire week in the hospital’s intensive care unit before he came to with tubes stuck in him to drain the internal bleeding. He couldn’t talk. He thought he was tied down to the bed when in fact he was paralyzed.  The first doctor, who probably was a resident on a rotation, told Grady that he had broken his neck, but that he had a 60% chance of walking again. Really?

The next day, another doctor walked in and delivered the bad news, the news that would become the reality in Grady’s life: There was a 99.9% chance that he would never walk again. “Why am I not dead?” Grady asked. In his mind, people who break their necks die in ten minutes or less. But the doctor said that lots of people survive spinal cord injuries. The thing is that nobody can say how much function will return. Hmmm . . . Sounds familiar.

While Grady was in the ICU, a kid was admitted with a broken neck resulting from an intimate encounter between his car and a telephone pole. He told Grady his life was over. No goals or ambitions. Grady said to himself, “Let’s see now. Do something with my life or spend the rest of my life at home doing nothing. Hmmm . . . I think I’ll do something with my life.” And he did.

But, like many of us, he had to hit bottom first, he had to face and deal with the moment we subconsciously suppress until it explodes into our consciousness. The reckoning. It can happen any time. I know this. It took Grady about ten years after the accident, when he was 28-years-old, to reach that moment. It was a couple of days before Christmas in Lincoln, Nebraska—he moved there in 1981. His family wasn’t around. He was driving around town when it hit. He swerved over to the shoulder and slammed on the hand brakes. He screamed, “You know Grady, you’re so stupid! You really screwed up your life! Your life could’ve been totally different if you hadn’t gone out drinking that night! If you hadn’t been so foolish!”

Grady was in a totally moral space when he pulled over. He knew he did something wrong, he broke a social (and legal) norm when he chose to down the beers, when he chose to speed like a maniac.  When Grady met up with his reckoning it said to him, “You have no one else to blame but yourself. Point the finger at yourself.”

But here’s the thing. There was something else lying beneath what he said, a brutal subtext about punishment. When you break a norm, there are consequences. The more morally infused word would be “punishment.” The norm could be the social type. Let’s say you’re a new lawyer at some fancy law firm. You get stupid drunk at a dinner party hosted by one of the firm’s partners. You projectile vomit on the table before passing out and smashing your face into your slice of the gluten-free orange and almond cake with mascarpone. Chances are you won’t be invited again to that partner’s home. Maybe nobody at the firm will do anything social with you. Your job might even be in jeopardy. That’s your punishment.

There are legal norms, too. If you commit a crime and you’re found guilty, you may go to prison. That’s your punishment. If you break a civil law, say you commit a “tort” by failing to stop at a stop sign and cause an accident and you’re found liable, you’ll pay damages to the party that sued you. That’s your punishment.

In all of these situations, there’s the idea that the punishment should be proportional to the norm you’ve broken. Most of us would think it reasonable if the new lawyer became a social pariah at the firm. But taking away her license to practice law would be way out of line. Most people would be outraged if a person got a life sentence for shoplifting. And jaws would drop if you had to pay a million dollars for a simple fender-bender.

But there’s no such thing as proportionality regarding the loss of body function resulting from breaking a norm. The punishment is completely arbitrary. Grady could’ve walked away from the accident along with Jake. He could’ve suffered a couple of broken ribs. Throw in an arm or two. He could’ve lost body function below his waist—a paraplegic. But, no, he was sentenced to life as a quadriplegic. A huge chunk of his body was taken away from him.

Maybe that’s what really hit Grady like a ton of bricks when he broke down on highway shoulder. It was his brutal subtext. Sure, he was screaming that he had only himself to blame. But beneath that he was gripped by a violent rage at the inhumane punishment he received for having a few too many beers. For having a heavy foot on the gas peddle. For being young and foolish.

Maybe you remember Brian McMillan’s narrative, the guy who became a paraplegic after his motorcycle accident. He called it “the roulette wheel of hideous misfortune. The ball lands on your number and you can’t believe it.”  “There’s no second chance,” Brian told me. “You can drop out of school and go back again. You can get divorced and marry again.” There was no second chance for Brian, and no second chance for Grady, either. No way to appeal what was a completely arbitrary and staggeringly harsh sentence.

Grady’s reckoning lasted about ten minutes. Then it was done. The anger went away. He put the car in drive, checked the rearview mirror, and accelerated into the right hand lane. He kept driving . . . Eventually Grady obtained an undergraduate degree in Communications from Eastern New Mexico University plus a graduate degree from Western Seminary in Portland, Oregon, and got married to boot. He’s now the Director of Disability Services at Wichita State University. In the meantime, he fell in love with wheelchair tennis and became a highly ranked quad player. Right on, Grady!

I’m pretty sure it took longer than ten minutes for Grady to cope with the hammer blow of his reckoning. It takes years, if not decades, to come to terms with both the blame and the punishment that results in the massive loss of body function. I think that’s why Grady and all of us at the camp have a passion for the sport. Every time we roll onto the court for a match, every time we toss the ball in the air to serve, every time we push hard to the ball, and every time we hit the ball over the net, we’re telling ourselves that at least in those moments we can tell arbitrariness to fuck off.

Chapter Five

Wichita’s “The Air Capital Classic”

******

The plane touched down in Wichita at about noon on Wednesday, June 17. It was a sunny and really hot day. I didn’t check the forecast for the Air Capital Classic combined camp and tournament. Had I taken the time, I would’ve seen that I was heading into a typical Wichita summer: crippling heat–uppers 90s (like 98-99) and horrible humidity during the whole event. But that wouldn’t have stopped me. When I met Nick Taylor at the Cajun Classic and saw him again in Kansas City, he encouraged me to attend the tournament that he and Grady Landrum had put together for sixteen years in a row—the camp was in its third year. It seemed like the perfect opportunity to take my game to the next level, especially as a quad player. I also looked forward to getting to know more about the tournament’s co-directors. Like the “Wheel It Forward” tournament in Kansas City, I would once again be playing a round robin against three other quads: Nick, Grady, and Taylor Graham.

When I looked up the tournament on the USTA’s website, it was listed as “The Air Capital Classic.” It was a catchy title and it made sense because of the major aircraft industry in Wichita that dates back to the 1920’s—the city is known as the “Air Capital of the World.”  But if I had a hand in choosing a title, I might have suggested “The Wichita Meltdown” because of the insane heat. I suppose, though, that the “I-can’t-think-straight-because-of-this-friggin-heat” connotation wouldn’t draw many participants.

This would be my first camp. Nick and Grady came up with the idea for a camp/tournament combination when the tournament’s attendance got socked during the 2008-2009 financial crisis in the country. As the numbers declined, they thought of a way to bring them back up: a clinic before the tournament. With that set-up, people can put the skills they’ve learned in the camp into practice right away in the tournament.

There were forty-four players at the camp. The athletes came from all parts of the country with a full range of skills, from the most pathetic, me, to pretty advanced players. There was Lauren Haneke-Hopps (A division), a high school student from San Diego whose passion for sports extends to kayaking, rock climbing, snorkeling, and baseball. Paola Adams (B division), a Chilean strategy and operations consultant now living in Oklahoma—she had recently taken up the sport.  The C division included John Watson, a basketball and softball player who had just received his Master’s in Communications from University of Texas, Arlington and now works for Kansas University in Lawrence.

We all gathered on the courts of the Riverside Tennis Center Wednesday evening for the first session of the camp. The five coaches introduced themselves:  Jason Harnett, U.S. Quad and Men’s World Team Cup Coach; Paul Walker, U.S. Women’s World Team Coach; Jeff Clark, Pro Coach to Nick Taylor; Kevin Heim, Lincoln, Nebraska’s Wheelchair Tennis Coach; and, of course, Nick Taylor. A pretty impressive group.

After coach Walker reminded us to be good boys and girls and clean up after ourselves, we split up into groups and worked on forehands, backhands, and serves. My forehand stroke was pretty decent by then. But my backhand needed major work. For most beginning players, the backhand is the most challenging to master. For me, it was especially hard because I was learning the “inverted backhand.” Non-quads can move the positioning of their grip depending on whether they’re hitting a forehand or backhand. But for most quads who tape their hands to the racquet, they have to decide what grip they can use for both forehand and backhand without switching grips. Some use a grip that lets them play a regular forehand and backhand using a “continental” grip. But my wrist is too weak to do that. Given my semi-western grip (try picking up the handle from the floor), my coaches had me learn the inverted backhand. Instead of the palm of your hand facing inward on a backhand, the palm is facing away from you. The coaches had me imagine throwing a tennis ball across the net with my left palm facing away from me. It’s really hard. But I finally began to get the feel of it at the camp.

As the camp progressed the next day, we concentrated more on strategy. We worked on getting back to “the hub” after a stroke. As a refresher, the hub is the area about three feet behind the baseline at the center of the court. I’m a left-hander. So if I roll to my left to hit a forehand, after the hit I should instantly turn into the court and push back at an angle to the hub. If I roll to my right to hit a backhand, after the hit I should instantly turn out and get my butt back into the hub. And as I’m getting back, I’m supposed to look across court to see where the next ball will go. I felt I was going to hurl after doing that drill for about six hits in the searing heat.

As the day wore on, I realized that I was one of the worst players in the camp. I began thinking that the coaches were writing me off. A 58 year-old lost cause. Then it hit me. After almost thirty years, I was a student again. If that wasn’t bad enough, I was at the bottom of the pack. Me, a mediocre student. I didn’t like the feeling.

Actually, I hated it. The other players seemed to be getting the attention than I craved from the “professors.” They seemed to be receiving more compliments than I did.  It didn’t matter that I was misperceiving it all. I felt like running—rolling—to the Dean’s office to complain that my profs were violating every policy known to humankind and ruining my chances of becoming the next number one quad player in the world, thereby robbing me of millions of dollars and my own private island.

Then I came to my senses. The coaches were fine teachers who knew when to intervene to improve us individually and as a group.

 

If you go to a wheelchair tennis tournament, you’ll see us competing on the courts. When we’re not playing, you’ll likely see us engaged in animated conversations, often breaking out in a cacophony of laughter. But if you dig deep enough, you’ll find the scar tissue of a traumatic moment, a moment when each of us faced the inevitable reckoning with a body seemingly lost to us. You can’t prepare for the reckoning’s coming. When it does come, it hits you with such brutal force that you can hardly breathe. And yet somehow we survive to laugh again. Here’s the next excerpt from my book.

Chapter Five

Wichita’s “The Air Capital Classic”

“It’s unlikely you’ll ever walk again.” What Dr. Silbert said wasn’t registering with me. What?

Unlikely.

You’ll.

Ever.

Walk.

Again.

“Wait. Say that again? I must not have heard you right, doctor,” I said in a whisper.

It was mid-September, 1980, and I was sitting in a wheelchair in my room at Hook Rehabilitation Center in Indianapolis when those gut-wrenching words collided with my ears.

I had survived the summer of torture in Bloomington Hospital’s ICU. I was breathing on my own. Shallow breaths. But still, they were my own. They took the feeding tube out and I ate, with great difficulty, some sort of baby-food-like slop. I could talk, but only a little bit now and then, and only in whispered tones. Trying to coordinate my breath, jaw, tongue and lips to be able to speak was a gargantuan task. I had some movement in my shoulders and upper arms, traces in my forearms and hands. Same for my trunk. And if you stared hard and long enough, you could see my quadriceps flinch occasionally. That was it. There was nothing more they could do for me in Bloomington. It was time for rehabilitation.  To rehabilitate is to restore. To what, though?

******

 

There were two ways to take Dr. Silbert’s words. One was, “Don’t get your hopes up. Rehabilitation doesn’t mean we’ll get you back to where you were before you contracted Guillain-Barré Syndrome.” The other way was, “I’m saying this so that you can prove me wrong.” It was probably a bit of both. In any event, I didn’t have much time to dwell on the possible interpretations. As soon as I was admitted, the Hook staff let me know in no uncertain terms that I was in rehab boot camp. It went something like this: “You’re not in a hospital anymore, so get that out of your head, pronto. No more nursing gowns. You’re going to wear real clothes. You’re going to do as much as you can for yourself as soon as you can. You got that?” “Sir, yes, sir!” “I can’t hear you!” Uhh . . . that’s because I can hardly talk? “What’s that? Huh, you pathetic hospital junky. Now drop down and give my fifty!” Oh, shit.

The morning after I was admitted I was on the mats in the physical therapy room. To arrive at a baseline, the physical therapist carefully measured the weakness in every part of my body. She used some sort of numbered scale, but she could’ve saved time by just writing, “pathetically weak.” From there, I was off to the occupational therapy room, where I would learn once again how to take care of myself, from showering to dressing. After a break, they took me to speech therapy where I would learn to talk again. This would be my weekly regimen for the next five months. Training to be a Navy Seal? Hmmm . . .

******

“Tonight you’re going to feed yourself,” the occupational therapist told me. She helped me sit in the wheelchair, strapped me in so I wouldn’t fall, and wheeled me over to the table in my room. She then brought in a metal contraption that she secured to the right side of my chair. It was designed to allow people with very limited arm strength to feed themselves. She placed my right arm on the contraption’s arm rest, taped a spoon to my hand, and via a number of inter-connected rods I could swivel my hand to my mouth. Pretty cool!

She then placed a round sticky mat on the table and put a plate of food on it: squishy broccoli, some sort of pureed mystery meat, and mashed potatoes. My severely weak swallowing mechanism couldn’t handle anything else. “Have at it, Enrique!” She left the room. It was just me and the food. I was hungry after all the day’s therapy.

Using what little shoulder strength I had, I managed to get the spoon to the plate and scoop up some mashed potatoes. With a few more shoulder movements, I launched the spoon to my mouth and fed myself for the first time in six months. I was deliriously happy. I went for another scoop, this time the meat. Successful! Yes!

Then something happened with the contraption. As hard as I tried, I couldn’t maneuver my hand to the plate. I tried over and over again. No luck. I looked for the call button to get help, but it was sitting beyond my reach on the bed. I looked out at the hallway hoping someone would come in and check on me. No one, not even a passing visitor.

I was alone. There was my food, just inches away from me, and I couldn’t get to it. I couldn’t do something as basic yet vital for a human to live: eat. Just over six months ago, I never would’ve thought twice about being able to put food in my mouth.

It hit me so hard that I could barely breathe. This thing, this fucking syndrome, took my body away from me. I was a shell of what I used to be. All because I had the goddam flu. Who was I kidding? The doctor was right. I would never walk again, let alone run again. My hands, just skin and bones, would no longer be able to do the simplest things in life, like buttoning my shirt. Why? Why me? What did I do wrong? What horrible sin did I commit that warranted such a brutally harsh punishment, condemning me to life as a quadriplegic?

Until that point I was consumed with staying alive in the ICU, and then transitioning to the challenges of rehabilitation. That evening, alone, and unable to feed myself, I had finally confronted the reckoning that had been awaiting me. I wept uncontrollably. Wept for the loss of a life I otherwise would have had as an able-bodied person.