This excerpt from chapter two focuses on the narrative called the Intensive Care Unit.

Let’s suppose you ask your friend to meet you at (not in) a closet somewhere. In that closet is a mop and a bucket. Nothing else. You ask your friend to describe what he sees. He looks at you for the longest time and says,

“You brought me here to describe a mop and a bucket in a closet? Really?”

“Yeah!” you say.

“Are you okay?” he asks with a very puzzled and concerned look.

“Absolutely! Now, come with me to the hospital!”

“Are you having a breakdown?”

“Maybe, but just indulge me, okay?”

“Yeeaahhh . . . sure . . .”

You take him to the hospital’s Intensive Care Unit and ask him the same question.

“Uhhh . . . well . . . I see people. Is that what you want?”

“Great! Can you describe them?”

“Like their haircuts?”

“What are they doing there?”

“Oh, I got it now. Looks like some are doctors. Nurses, too. Then you got the people in the beds. They look sick. Like, really sick. Hooked up to a bunch of machines.”

“Is that it?”

“There’re some donuts on a table over there. Can I have one?”

“Do you see anything else?”

“Well, one has sprinkles on it. My favorite.”

Why am I writing what appears to be inconsequential dialogue? Okay, I’m a bored playwright who hasn’t had a play produced in a while. Putting that sad fact aside, your friend has done pretty well. Just as he accurately described what he saw in the closet—inanimate objects, he also accurately described the inanimate objects he saw in the ICU, especially the donuts. He could’ve gone on to describe other physical aspects of the floor he was on, such as the number of rooms and the nurses station.

Hey, wait a second, you say, he also described animate objects, the human beings. That’s right, he did. But he failed to describe the most important part of the ICU inhabited by human beings: its subtext, something he wouldn’t be able to do by merely walking into that part of the hospital.

Now you’re going to get all playwrightey hoytie toytie on me, you grumble. Well, yeah. Deal with it. So subtext is an implicit meaning in language that doesn’t match what is said or written. It’s what lies beneath the words we use. We use subtext all the time whether we know it or not. Let’s take a familiar example. Let’s say your partner tries on a new outfit. It gives you great pause. She/he asks you the dreaded question, “Well, how does it look?” You freeze for what seems to be an eternity as you fear for your life and then croak, “Uhh  . . . you know . . . what’s most important is whether you like it, honey-goo-goo!” She/he then storms away vowing never to talk to you again because what you were really saying is that the outfit sucks and she/he looks terrible in it.

Yes, your friend did accurately describe what he saw on the surface. But, aside from the reactions we might have to what we see, from joy to horror, the visual appearance may be the least important and least interesting aspect of life. What lies beneath what we see is far more important and much more compelling, that is, the life narratives that inform who we are as human beings.  And even more compelling are the webs of interactions among human beings that create and shape the narratives.

With that in mind, let’s explore the ICU. When you enter the ICU, whether as a patient—that’s assuming you’re conscious—or as a visitor, you can see and even feel a place where life and death commingle in strange and frightening ways.

Let’s dig deeper. Intensive. Care. Unit. It’s a world unto its own with a narrative that reflects those three words. Intensive: An extreme degree of concentration on a very sick patient by doctors, nurses, therapists, lab technicians, and others. Care: The use of any and all forms of medical intervention, from medication to surgery, to keep the patient alive. Unit: Yes, it’s what your friend described, but more importantly, it’s a “space” within which a narrative lives, the content of which is informed by the people in it and their roles. The doctors, who visit the patient maybe once a day during rounds, direct the medical intervention. The nurses execute the doctors’ orders, and, unlike the doctors, stick around with the patient and help him or her get through the day or night. The lab technicians, vampires in scrubs, stab the patient with needles to draw blood. Family and friends worry. The patient provides the puzzle, the problem that needs solving. Without this perilously sick person, the ICU narrative wouldn’t exist.

Is there hope in this world, this narrative, of the ICU, even if it’s limited to the micro variety I’ve described? For sure the medical staffers hope their interventions will keep the patient alive and improve the situation so that she can be transferred to a step-down unit and eventually be discharged. Friends and family will have the same hope, but perhaps dwelling more on the hope the patient won’t suffer—and annoying nurses with their demands in this regard. The patient? Assuming she’s conscious, she’ll likely be in a state of shock, a state of disbelief that shuts down hope altogether.

Everyone brings their own life narratives to the ICU, which can collide with each other at any given point. For example, a family member may be a lawyer who went to law school because his father died due to a doctor’s negligence—he distrusts doctors to his core. He may well clash with a doctor who’s earned a stellar reputation in her field and believes to her core in the power of medical intervention, focusing on the patient, not the family or friends. Enters stage left the social worker who, among other things, tries to keep the peace, tries to manage the clash of subtexts.

So here I come. The puzzle, the problem that needs solving. I suppose I should’ve felt l was the most important person in the world. After all, without people like me the ICU and its narrative wouldn’t exist. Hmmm . . .

The first thing I noticed when they wheeled me into the ICU was the cacophony of the machines and their alarms that were keeping people alive—from heart monitors to ventilators. As the days in the ICU turned into weeks and months, the cacophony became a sort of symphony of sounds with its own peculiar rhythm.  I actually came to love those sounds. Had they stopped, I would’ve panicked. I’m not sure that can happen when you’re dead, though.

But I wasn’t dead yet. I was in the process of getting there. Why didn’t I wail or scream? Shock shuts you down, numbs you to prepare you for the transition to nothingness, the end of your life narrative.

Maybe I should’ve screamed at the top of my lungs. Because within hours of being admitted to the ICU the paralysis had crept up my waist and trunk and begun shutting down my lungs. My parents, Elaine and Pedro, were notified later in the afternoon as things got worse. They wanted to talk to me directly so they wheeled me to the nurse’s station and I told them in labored breath what was happening. They said they would drive up from Baton Rouge right away. It was if GBS gave me a time out to let me talk to my parents before it resumed its march up my lungs. It then took my throat, tongue, and mouth. Then even my eyes.

Within days, when it looked like my stay at hotel ICU would be for an extended period of time, they pulled the tube feeding me oxygen out of my throat and I was wheeled into the operating room where a surgeon cut a hole in the base of my neck—a tracheostomy—so that the ventilator could pump oxygen more directly into my collapsed lungs. Within days, the doctors had to cut a hole in my stomach to insert a feeding tube so that I wouldn’t starve to death. Within days, a heart surgeon went through my neck to put in a temporary pacemaker to keep my heart beating.

I was fighting for my life. “Booyah,” shouted Guillain-Barré Syndrome. I swear I saw it do a fist pump.

This is the next excerpt from chapter 2 of my book. Each chapter toggles between my life narrative before wheelchair tennis and the beginning of my journey in the sport. This post explains the game:

We descended into a beautiful, sunny day in Baton Rouge: upper 70s and low humidity. Perfect for tennis. It makes a lot of sense to hold that tournament in March. Holding it later in the spring and especially in the summer would be cruel and unusual punishment. Temperatures typically climb well into the 90s and stay there. But the killer is the high humidity. And playing on an asphalt outdoor tennis court makes things even worse. In the 2014 Australian Open, temperatures reached 110 degrees Fahrenheit before match play was suspended. Players were vomiting and fainting on the courts.

But the straight thermometer reading is not the most accurate way of measuring the danger zone. The Wet Bulb Globe Temperature (WBGT), developed by the military in the 1950s, takes into account the temperature, humidity, wind speed, and exposure to sunlight. If your skin temperature, based on that measure, rises above 95 degrees, your body becomes increasingly unable to lose body heat through the skin. Eventually, your body organs shut down. You begin to melt. Not a pretty sight.

Quadriplegics know this risk well. Many can’t sweat because of a break in their spinal cords. This can happen in any number of ways. For example, a fellow athlete from Philly, Michael Sullivan, was enjoying a lovely warm day at a lake house with friends a number of years ago. A pier behind the house extended straight into the lake. Michael decided to cool himself by taking a dive into the water. Instead of diving from the end of the pier, he dove from its side. It seemed like a decent point to dive into; the lake was known for the quickness of its depth. What Michael didn’t know was that a portion of the pier running perpendicular to the main pier had been removed but not the supporting pylons, which couldn’t be seen from the pier. He dove in.

Snap.

And in an instant, Michael was transformed into a quad. Now he can’t sweat because the line of communication between his brain and the sweat glands has been severed. When it gets hot, sweat helps us cool off, in part when the sweat evaporates. But, using the WBGT, when it gets humid, making it harder for the sweat to evaporate, and there’s no breeze to help evaporate the sweat, and it’s a sunny day, disaster looms for everyone, but especially for quads who can’t sweat–I can because I don’t have a spinal cord injury. That’s why you’ll be able to figure out who the non-sweating quads are on the courts by spotting their use of water sprays and wet cooling towels, among other things, to mimic sweat. If the tournament site has indoor courts, quads may be required to play there. This pretty much sucks for three reasons. First, because quads are segregated and removed from the rest of the tournament play. Fifth, because the indoor courts are stuffy. And B, because it’s harder to set up the ESPN crew indoors.

Getting back to the Cajun Classic, when I entered the complex, my eyes immediately were drawn to a tent where colorful flags from all over the world were flapping gently in the breeze. I hadn’t really appreciated until then the extent to which the tournament was truly international. There were athletes from countries all over the world: Australia (3), Belgium (2), Brazil (4), Canada (3), Chile (3), Colombia (1), Guatemala (1), France (7), Germany (2), Israel (2), Japan (2), Mexico (2), the Netherlands (4), Russia (1), South Africa (2), Sweden (1), and the United Kingdom (8). Pretty cool. I love just about anything international, especially IHOP. . .

The Cajun Classic is part of the UNIQLO Wheelchair Tennis Tour, which as of this writing is comprised of 160 tournaments in over forty countries, with $1.5 million in prize money. Wow! Over one . . . (picture Dr. Evil) . . . MILLION dollars! Hah-hah-hah-hah-hah! Hah-hah . . .hah . . . But Dr. Evil, the world’s number 1 male player in 2015, Novak Djokovic, raked in $21,646,145. You would have to jump down to the world’s number 15 player in 2015, Feliciano Lopez, to just about equal what the Wheelchair Tour sprinkles around its tournaments. The Cajun Classic offered $25,000 in prize money. Is this fair? That world-class tennis players in wheelchairs get not even pennies on the dollar compared to their able-bodied counterparts? (I really, really don’t like the “people with disabilities/able-bodied” dichotomy.)

What if we turned things upside down, or actually right-side up, and lived in a world where wheelchair tennis players enjoyed all the money and fame, and able-bodied players received hardly any recognition and struggled to finance their tournament play, let alone put food on the table? Wouldn’t happen because there’s no money in being an inspirational person with a disability. Besides, we do it for the love of the game! Wheelchair tread marks on a face are harder to remove than tattoos.

In its twenty-sixth year, the 2015 Cajun Classic is a “Category 1” tournament, one of six classifications sanctioned by the International Tennis Federation (ITF), tennis’s world governing body. Among other things, the ITF sets the rules of the game, which are then put into play by national bodies, such as the United States Tennis Association (USTA). There are six categories of ITF-sanctioned tournaments, with the Grand Slams (Australian Open, Roland Garros, Wimbledon, and the U.S. Open) at the top of the pyramid and the Futures at the bottom. In 2015, a number of the other wheelchair tournaments met the ITF classifications—e.g., Pensacola Open (Category1), Indian Wells Tennis Garden Wheelchair Championships (2), Fall Southern PTR Wheelchair Tennis Championships (2), and the U.S. Open Wheelchair Championships (Super Series).

The tournament’s ITF classifications depend on a slew of requirements, such as transportation, the provision of free meals and water/sports drinks for the athletes, first aid availability on site, at least three days of competition, facilities to store the sports wheelchairs overnight, adequate shade, a repair station with an air compressor (for the wheelchair tires), an onsite players’ lounge, types of officiating, and prize money. The higher the tournament in the pyramid, the more requirements the organizers have to meet.

The first logistical task—sorry? Oh, right, how the game got started and how it’s played. The birth of wheelchair tennis goes back to 1976 when Brad Parks, an 18-year-old gifted freestyle skier, suffered a bad fall on the slopes and ended up paralyzed from the waist down. During his time in rehabilitation, he met wheelchair athlete Jeff Minnebraker and they came up with idea of playing tennis in a wheelchair. From there, wheelchair tennis exploded—at about the same time the game itself became wildly popular in the United States. In 1992, wheelchair tennis became a full medal sport at the Paralympics in Barcelona. Today, the game is played in more than 100 countries. Very cool.

To play competitively, you have to have a medically diagnosed permanent mobility-related physical disability that results in substantial or total loss of function in one or more lower extremities. For example, if one or both of your legs are paralyzed or if one of your legs has been amputated. If one or both of your arms are also similarly impaired you can qualify to play in the quadriplegic division. In the big tournaments, you’ll have the Open and Quad divisions, populated by virtually all of the professional international and U.S. athletes. Below those divisions are USTA-designated A, B, and C divisions, with A being the most seasoned players and C being the so-so players. At one time there was a D division for novices but that category is virtually gone. Instead, some tournaments will have a free novice event to attract new players. Frankly, I wish the USTA had a “gutter” division, which is where at the time of the Cajun Classic I believed I belonged.

How is the game played? Just like the able-bodied game, only wheelchair tennis players get two bounces instead of one before they have to strike the ball. The second bounce can be either in or out of the court’s boundaries. Did you (not actually you—just a straw person) call that a wuss rule, huh, did ya? Try getting into a wheelchair and play the game. You’ll be like a deer in the headlights and pee in your pants when the ball comes over the net at you. Actually, the really good wheelchair tennis players take it on the first bounce—and from seemingly impossible angles. When I first tried to do that, I peed in my pants. . .

Getting back to the rules, the wheelchair is considered part of the athlete’s body. So just like able-bodied tennis, if the ball comes over the net and hits any part of your wheelchair, you lose the point. When you do that to your opponent, you’re supposed to say “sorry” but secretly you loved it. Booyah! In your mind you do a fist pump.

Chapter Two

Baton Rouge’s “Cajun Classic”

Hope. What is that, exactly? There’s the everyday kind of hope that we use to get through the day. I hope I can still get to work on time despite this horrible traffic. I hope Kip doesn’t show for the meeting because he’s a jerk. I hope they’re not cleaning the bathroom because I have to pee really badly! Except for maybe the last example, this type of hope, we can call it “micro hope,” doesn’t determine whether or not we’ll achieve our life’s goals. If most or all of our micro hopes are dashed, we might be having a bad day, well, maybe a really bad day, but in most cases we shrug it off and hope things will be better tomorrow.

Then there’s the kind of hope, we can call it “macro hope,” that helps us get through life and achieve our goals, the kind of hope that helps us weave the narratives of our lives. There’s lots of literature in the field of psychology that explores the concept of hope. A commonly cited definition is that developed by Charles Snyder and his colleagues: “a positive motivational state that is based on an interactively derived sense of successful (a) agency (goal-directed energy) and (b) pathways (planning to meet goals).”   In my case, if (a) I put my mind to it and stuck with it—agency, (b) I could get into law school, do really well, work for a judge a year or two, or practice in a large law firm for a few years—pathways, and then reach my goal of becoming a law professor who one day would make a difference in the lives of students, and, if I could avoid peeing in my pants every day, become a respected intellectual figure in my field.

My hope, my macro hope, would begin by moving in the summer of 1980 to Washington, D.C. to attend Georgetown University Law Center. But then Guillain-Barré Syndrome came along and began robbing me of a fundamental prerequisite to hope: control over my body. The paralysis started in my hands and feet. On the day I was admitted to the Bloomington Hospital, April 11, 1980, the paralysis continued its steady march up my legs and arms. At that point my only hope was that this evil, heartless, terrifying, creeping thing would relent, if only out of pity. It didn’t. I was having a very bad day.

From the emergency room, they took me to the pediatric unit since that was the only bed left in the general part of the hospital. As my breathing became more labored that day, they rolled my bed into the ICU. The room was small and narrow, not too far from the nurse’s station. It was, fittingly, a drab room, painted an industrial dull yellow, with a worn curtain for a door. There was a window that allowed in natural light but because it was at my feet, it seemingly had no function for me. It wasn’t a room with a view, so to speak. I should’ve complained. I could’ve gotten a free night out of it I suppose. . .

As soon as they had locked the bed in place, a nurse came into the room with a welcoming face that at first put me at ease, as if her smile was telling me that everything would be okay and that I would be strolling around Bloomington in no time.

Then she put the heart monitor on. With every lead pad she stuck on me I began to wonder whether I was reading her smile right. Maybe it was saying “welcome to hell.”

Say goodbye to hope, Enrique.