3rd place prizewinner

Sickle cell is not just a black disease. Though this fact has been public for decades, people still startle when they find out that I have it. It’s like the year is 1983 and I’ve just introduced myself as Gaëtan Dugas, the promiscuous gay flight attendant who was North America’s first known AIDS carrier. Sometimes they lean away, or wipe their palms against their slacks if we’ve shaken hands.

Another little-known fact is that sickle cell is extremely painful. Imagine sticky, microscopic scythes catching on the insides of your blood vessels and clogging them up. These little weapons are your red blood cells after they’ve elongated into sickles, which happens periodically throughout your life when your arterial oxygen pressure dips too low.

Once stuck, the cells stop transporting oxygen to the various parts of your body. You can see how the risks multiply from there. If enough cells sickle during an attack, they’ll cause the vessels to warp and collapse. Worse, prolonged oxygen deprivation in your bones and organs can mean necrosis. Even if you never suffer from the most severe complications, which include stroke, brain damage and penile infarction, you live in fear of them.

The disease also brings the stigma of visible sores. For years black Americans used to cover up their sickle cell lesions with tar soap. I’m a 31-year-old white man named Jim Thibodeaux who can handle physical pain, but the tar soap story haunts me because every summer I play volleyball with my employees while secretly worrying about the makeup my wife buys me melting off my ulcerated legs.

In those moments I remind myself of three facts: One, I have a brilliant, gorgeous wife. Two, I’m not even 35 and I own a successful travel business—and not, by the way, an inherited one. Three, other than the chronic leg sores, I haven’t really been affected by my disease except when it comes to commuting. I can’t even book puddle-jumpers for short flights because long before a plane reaches 68,000 feet, where the air pressure is just about zero, I risk a severe attack. Jet cabins are pressurized but small planes’ cabins aren’t. My blood cells can’t handle that, so I end up taking a lot of trains for business.

The most universal symptom of sickle cell, which I try not to think about, is a shortened life-span. Before the medical community had a grasp on the disease, Africans called it ogbanjes, meaning “children who come and go,” because if you got it you weren’t sticking around for long. Now, odds are that I’ll see 40 or even 45.

I never see much literature or information out there about the disease, maybe because it isn’t contagious so the authorities figure why bother. Premature death is the one symptom that seems to be commonly known. I’m not fond of sympathy but I do appreciate a rudimentary level of understanding. Of course a little knowledge can be a dangerous thing too: for a while, the US government forced all black Air Force applicants to undergo testing for the sickle cell mutation. Before finally getting sued, they dismissed 143 applicants who didn’t actually have the disease but had inherited a defective allele from one parent, making them genetic carriers. That was a long time ago, in the 1970s, but still.

I know a lot of these little factoids because my wife, Lauren, is a history teacher. She works at Oakland Academy of the Arts, which is not just an art school but also a prep school. A few years back, when my business really picked up, Lauren was feeling burnt out and considered quitting her job—but she decided to stay so that, should one of our future children turn out to be artistic, we’d have an in at the school. OAA is extremely selective.

Now it looks like Lauren’s tenacity may be rewarded. We’re pregnant with a baby girl. I used to think that only cheesy men used the term “we’re pregnant,” but not anymore. Last week during the ultrasound, our daughter waved her right hand at us as if saying hello. If I could carry her in my own body I would. I’d even give birth to her when the time comes, because as I said I can handle physical pain. It wasn’t always that way, but a positive side effect of sickle cell is that you learn not to let the pain get to you. Other than that, the only upside is that you’re far less likely to die from malaria, so go on, take that exotic vacation and forget the mosquito netting.

My only fear about giving birth would be the possibility of post-partum depression. Pain that attacks your body is one thing but I watched my sister go through eight months of depression after having her first boy. She would sit with her nose inches away from the living room window in her high-rise condo, pretending to watch the neighborhood, but then the sun would set and she would still be sitting there long after the window was empty of its pretty picture and only reflected her sad face.

For me the worst phase of post-partum might be beforehand, wondering whether I was going to get it. I hate that kind of murky foreboding feeling. It’s been a little like that for us throughout Lauren’s pregnancy, because my wife carries the sickle cell trait although she doesn’t have the disease. Around her two month mark, we were scheduled to go in for a prenatal screening. There was a 50% chance that the test would say our baby had the disease and a 50% chance that it would tell us she was just a carrier, like Lauren.

We stayed up late the night before the appointment, fighting, and in the morning we didn’t go. Instead we made a deal that each of us would sign up for individual therapy to really get a grip on the situation. We reached this decision after a debate about how we would handle things if our daughter had the disease, followed by two hours of Lauren crying and panicking in our small warm kitchen, and me sitting there silently.

In the three years that we’ve been married, which have also been the three happiest years of my life, I’ve uttered barely a word to my wife during a fight. This may sound cruel, but what I’m trying to do, with all my might, is avoid saying anything stupid while she’s already upset. During our very first fight as an engaged couple I spoke up, and I’ve spent the four years since wishing I hadn’t. The fight had started out as a goofy sparring match around what we might one day name our future children, and ended with Lauren calling me racist. Lauren, like most sickle cell carriers, is black.

Anyway the day of our scheduled prenatal appointment we woke up exhausted, returned to the kitchen with the phone book, and signed up with separate shrinks. She’s iffy about hers but I like mine. My therapist’s name is Alan M. Rapp. When I walked in for our initial appointment, admiring the fact that he could practice in a flower-filled office and wear a yellow plaid shirt while still retaining an admirable amount of benevolent masculinity, he said: “Call me Al.” Later in the session, during a quiet moment in which I examined his credentials on the wall, Al’s other nickname occurred to me. I glanced sharply from the framed certificates to his face, and he gave a slow, knowing smile that caused creases to appear around his eyes and mouth. “Yes,” he said, “some folks call me Shrink Rapp.”

I see Al every week now. Sometimes we talk about sickle cell and fatherhood but mostly, surprisingly, it’s about Lauren. I have never been a man who talks about women with other men—particularly not about Lauren—but in doing so with Al, I’ve learned three things. First, ever since I found out that she was a sickle cell carrier, shortly after we got serious, I’ve been angry with her. Second, I love her more than anything and will get over my anger.

The other lesson I’ve learned is that anger and fear are basically the same thing. Minus one letter, they’re even the same word: fight/flight. This helps me out a lot. Maybe the next time Lauren cries, which hopefully won’t be soon, I’ll be able to remember it, calm myself down and say a few cautious words.

As challenging as remembering new things can be, forgetting them has been harder lately. I want to forget about the disease and live my life around it again, rather than inside it—but every time I look at my wife’s belly, I remember. When I pick her up from work I find myself wandering toward the reference section of the school library, where a few hardbound red medical books huddle together on a metal shelf. Then, while Lauren is inevitably held up by a parent or student, I learn a little more about sickle cell, and every new piece of information reminds me of Gaëtan Dugas.

Mr. Dugas, the infamous AIDS carrier, was a white guy like me, with French-Canadian roots like mine, who died of his terminal illness when he was my age. They say he left 2,500 sexual partners strewn in his flight path. When he felt well, he used makeup to cover his lesions but when he was gloomy, he made a point of displaying them to the other flight attendants. “I have the gay cancer,” his colleagues quoted him as saying in despondent moments, as he counted his purple sores. “Maybe you’ll get it too.”

I haven’t mentioned this to Al yet but every time I drive past Lauren’s school now, or leave the obstetrician’s office, I become Gaëtan Dugas. It’s not like I’m comparing my sexual roster to his or sickle cell to AIDS, but I’ve always remembered something that Lauren told me: in the AIDS community, Mr. Dugas is known as Patient Zero.

When I start to get these weird empathic pangs, my own identity fades out. I cease to be a happy, successful, expectant father with a study to paint pink and fresh new problems to solve—like how to raise a girl up to be a soccer player instead of a cheerleader. Suddenly I’m a dying, pestilent man who should have been more careful in choosing a partner himself. Then it begins to feel like I’m not even a man anymore, but just a dumb disease that will eventually kill its host, negate itself. A zero. I start to scratch at the crusted sores on my legs, the blood drains from my head and the pain starts up as though I’m climbing toward 68,000 feet in the sky. Usually at that point, if I’m alone, I pull the car to the side of the road.

Just before I cross the horizon, black out, disappear, I force myself to breathe deep breaths and remember the deep connection between fear and anger. I remember Al’s crinkly grin, which tells me that he’s a good guy who genuinely likes me because I’m a good guy too. Then I think about Lauren’s delicate shoulders, slender hips and big pregnant belly, and finally I let myself remember the missed prenatal appointment.

That morning we sat in the kitchen holding hands across the table. Before the pregnancy, we’d bought supplies and repainted the kitchen a nice color: champagne, it’s called, and so of course we drank a bottle while we worked and the edging’s a little uneven in the corner where Lauren finished up. There’s a square, burnished steel clock on the wall near that corner. I was facing it as we sat at the table, and I watched our prenatal screening hour come and go. During this time Lauren found her shrink and set an appointment. Then she hung up the phone and put her hands inside mine again.

By now I had my apology ready. I was about to speak when Lauren blinked hard a couple of times, swallowed, rubbed her forehead and started apologizing to me—not just about the night before, but also for our first fight, four years ago, when she’d called me racist. She swore that she never would have married me if I were a racist. Her grandma would have killed her, 87 years old or not. She gave a little dry laugh. That fight wasn’t actually about names, heritage or racism, she said, and last night’s fight wasn’t about how we would raise our daughter together.

“It’s just the opposite, Jimmy.”

I stared at her. “The opposite?”

“I’m terrified. I don’t want to raise a child alone after you die.” Her hands were cold and I rubbed them slowly with my thumbs. “Fear comes out in weird ways sometimes, Jimmy,” she said. Then she opened her eyes wide for a moment, shut them tight, dropped her head and started crying as though it were she who was killing me and not the disease. I had to let go of her hands so she could wipe her face. 

I do some deep breathing in the car while I replay what my wife said, maybe shift in my seat and roll down the driver’s side window. That was a hard thing to hear. It may have thrown me off a little, but as with the physical pain, I’m pretty sure I’m learning how to handle this new Patient Zero phenomenon. I picture Lauren walking down our driveway with her arm around a healthy, grinning girl in a soccer uniform. I remind myself that the sum of one’s existence is counted in blessings and not in years, and then, slowly, I count. I count my blessings: wife, job, happiness. Baby.

Slowly my hollow center fills in, the pain weakens and my feelings about that morning revert to life size. I keep my breathing steady and remind myself that rescheduling the screening won’t change anything, since it’s not a treatment or a cure; only a test, like the test of being able to forgive yourself and the people you love.

While the panic dissipates, I breathe strong breaths and envision genius angels in white lab coats, who for some reason look like Groucho Marx. They move efficiently around me as I sit in their laboratory in the clouds. They’re busy improving bone marrow transplantation and gene therapy procedures, and handing each medical advance down to the earthly doctors who will treat my daughter after I die. That’s if she even inherits the disease. 50% is better odds than life generally gives you; better than they give you in Vegas.

At that point I can pull back into traffic, concentrate on the road. I’m me again: a successful, married young business owner who will soon have a baby daughter. It’s like I’ve hit zero pressure and come back down. I can see the ground below, make out the details of the earth in proportion to the sky, and my flight path is clear. Sometimes then I have a fleeting image of Gaëtan Dugas. He looks at me closely, not smiling or frowning, just before his name leaves my thoughts. In its place come other names, like Malika. Serena. Rose.

Return to Summer 2009 issue