Photo by Vikesh Kapoor
I WAS BORN YELLOW.
I don’t mean that I was born a coward (though many people I’ve known might say otherwise). I was born with a rare disease that gave me severe jaundice, which made my skin glow like a streetlamp. My bilirubin count was abnormally high. Bilirubin is the brownish orange bile-like substance that forms when your liver breaks down old red blood cells. If you don’t expel your bilirubin through normal means, or if your body breaks down blood cells faster than you can eliminate them, you develop jaundice, and your spleen becomes enlarged. To solve the immediate dilemma of my jaundice, the doctors put me, naked and yellow, into a small plastic box (an incubator, more or less) and exposed me, hours upon hours, to bright fluorescent lights. Called “phototherapy,” the procedure gives the impression of a newborn in a tanning bed.
It didn’t help. My bilirubin count remained stubbornly high, and my skin and eyes remained yellow. The doctors could not explain to my mother why their treatment wasn’t helping. They told her that if things did not improve, her son would need a blood transfusion. I was kept in the hospital and, though my bilirubin count did eventually drop, my mother soon accepted that she would have to go home without me.
This was back when she and my father were still married—a time that, to me, exists only as a rumor. My father, as I came to learn, was an alcoholic. He stayed drunk while my mother went back and forth to visit me at the hospital. Eventually my mother was allowed to bring me home. She laid me in my crib and looked down at me, and it seemed like everything would be all right. But the homecoming was short. I quickly came down with a fever, and my mother rushed me back to the hospital. I was admitted to the isolation unit on the chance that I had spinal meningitis. They gave me a spinal tap, and my mother listened outside the door as my screams echoed throughout the halls of the hospital. My fever finally went down, and I was allowed to return home once again, but the doctors still could not explain what was wrong with me.
I made it through the next five years with no significant problems. But my parents began to notice how I would often fall asleep at peculiar times and how sometimes eating would cause me pain. Moreover,
MY JAUNDICE WAS BECOMING MORE AND MORE PRONOUNCED.
My mother took me to the hospital, and after undergoing X-rays and other tests, doctors discovered I was full of gallstones. No one knew what to make of it. They couldn’t offer treatment without knowing what I had, and I wasn’t showing the normal symptoms of anything familiar, anything to which they could say, “This is what this is, and this is what we do now.” Surrounded by specialists, examined by experts, I was a puzzle missing a vital piece. And then a young doctor, not long out of school, said she had an idea that could be proved or refuted by a simple blood test. They took my blood, ran the test, and the results confirmed her hunch.
It’s called hereditary spherocytosis. It is a genetic blood disease, characterized by the production of red blood cells shaped not as a bi-concave disk (like a donut) but rather as a sphere. These disfigured cells, called spherocytes, are quickly passed off to the spleen, whose job is to destroy foreign elements in your body. The normal life of a red blood cell is 100 to 120 days; with spherocytosis, your cells are destroyed in 10 to 30 days. You develop anemia, a lack of oxygen, an enlarged spleen and jaundice. Hereditary spherocytosis typically occurs in one in 2,000 people of Northern European ancestry. My mother is Jewish, from Russian descent. My father is African American. The odds for my having this disease are so slim that it doesn’t merit even a mention in medical journals. There is no cure for spherocytosis. The only treatment is removing the spleen, though nothing is wrong with the spleen itself. It is only doing what it was made to do.
Throughout my entire life, I’ve met only one other person with hereditary spherocytosis: my father. And he had lived his whole life, up until my diagnosis, without knowing it.
The night before I was scheduled to have my spleen removed, my mother tried to explain to me what surgery was, what I should expect, and why I had to have this procedure, though she didn’t completely understand it herself. At 5 a.m., the day of my surgery, a nurse came into the room and said there had been a mistake. The staff had neglected to give me a pneumonia shot, which is required two weeks in advance, to help ward off infection. The surgery would need to be postponed.
My parents were relieved. They had both been reluctant for me to undergo this surgery, and they took this delay as a sign not to go through with it. We learned many years later that having my spleen removed at that young age, before my immune system had time to fully develop on its own, could have required me to need a pneumonia shot periodically for the rest of my life. This surgery is apparently no longer performed on children. But at the time, this was the only known treatment, so when my mother informed the doctors that we would not be rescheduling the procedure, they argued with her and threatened to call protective services. Defiantly, my parents and I left the hospital, went out for lunch and celebrated what seemed to be a narrow escape. Soon after, my stomach trouble subsided, and I could eat without pain, which my mother would claim as a victory.
I did, however, remain jaundiced. It was merely something I lived with and accepted and didn’t think too much about one way or the other. It was not something that affected my everyday life. I had no reason to think that anyone else gave it any more thought than I did, as though it were only a cosmetic blemish, a birthmark.
The degree of jaundice fluctuated. Some days it was hardly noticeable, other days my eyes flared like torches. But if strangers I encountered wondered what was the matter with this boy with the yellow eyes, they kept it to themselves. The names and interrogations would come years later.
My parents divorced. I lived with my mother and stayed with my father on weekends. For most of my childhood, I existed in two worlds: my mother’s world of townhouses and station wagons and pizza delivery and my father’s world of tinted windows, liquor in plastic pint bottles, corn bread, ham and greens dripping with fat. I lived comfortably in neither world. Being the son of a white woman and a black man, and not obviously appearing either white or black,
I RESIDED IN SOMETHING OF A GRAY AREA, CONSTANTLY AWARE OF MY “OTHERNESS”
When I was with my mother and the extended Finley family, I was the dark one, the only member of the family with nappy hair. With the Holley family—my father, grandmother, aunt and an endless parade of cousins — I was the light-skinned one who “talked white” and couldn’t shoot hoops worth a damn.
For over 100 years in this country, numerous epithets have been given to people of black and white descent. Some are so innocuous they basically describe nothing about the person’s ethnicity — “mixed,” for example, or “biracial.” Some names, however, brandish the history of this country’s racial prejudice within their very etymology—“mulatto” (Spanish for mule), “half-breed,” and, of course, “yellow.”
Because the only other person I knew with hereditary spherocytosis was my father, I did not have a strong point of reference for what I should expect in terms of living out my life with this disease. Blood disorder aside, my father was not the best example of a healthy existence. After returning from Vietnam, he’d had ongoing problems with drug and alcohol abuse. His alcoholism, like our shared disease, was merely something I’d accepted as a fact of life, nothing to judge or lament, just the way things were. It seemed so natural that I never thought twice about referring to my parents by their respective vocations: “My mother is a social worker and an artist; my father is an alcoholic. Nice to meet you.” He was never angry or violent with me, never knocked things off the table or even so much as raised his voice. His alcoholism and drug use was a personal affair—something he, I supposed, saved for when I wasn’t around. I didn’t think being an alcoholic was that big of a deal, except for it having something to do with why my parents were no longer married and why my father couldn’t keep a job. Alcoholism, in my mind, was not much different from the other disease he had—the disease we both had. If you were to look at photographs of me, from my teenage years and on through my 20s, you would probably notice one particular thing — aside from my lanky frame or my sideways grin. I was often squinting. You might think the sun was shining directly in my face at all times. Photography had a way of magnifying the yellow in my eyes, especially when a flash was used, and the result could be shocking. When people took out their cameras, I learned to squint as much as possible without closing my eyes completely. I’d hoped it would just make me look more mysterious. But my jaundice wasn’t confined to photographs. It was there when I stared into the mirror. It was there when I met new people and watched as their gaze altered just slightly, almost imperceptibly, an eyebrow lifted or a brow wrinkled. And it was there when I was intimate with a lover and had to avert my eyes to avoid seeing her looking too deeply into my stained eyes. It was there all the time to varying degrees. Most comments I received came from general curiosity or concern: “Do you know your eyes are yellow?”
“Yes, I know,” I’d say, followed by a brief explanation. I became so accustomed to talking about my disease over the years that I could explain it within 10 seconds. I followed a script. It was, of course, an abridged explanation and rarely offered much solace, but it at least somewhat alleviated their concern and, most important, got them off my back. But sometimes it wasn’t enough.
MANY PEOPLE WANTED MORE ANSWERS OR TO OFFER UNSOLICITED MEDICAL ADVICE, THE WORST KIND OF ADVICE.
And there were all the would-be doctors and nurses in training and naturopaths and other self-styled experts who came up with their own wildly diverse diagnoses. There was the manager at the record store where I worked who thought I was on heroin. There were the stoners who thought I was high all the time. There were the nursing students who told me I had hepatitis, the young goth kids who thought I was wearing some kind of weird (but cool) contact lenses and the vegetarians who thought I needed more dark leafy greens in my diet. There were meat eaters who thought I needed more red meat, and there was the health inspector who visited the deli where I worked and asked to speak to me in private. A customer had been concerned and took it upon herself to report me to the food and safety department. I ensured the inspector I did not have HIV, Hep C, Malaria, Syphilis or yellow fever. I explained hereditary spherocytosis patiently and to the best of my ability. He was satisfied, and I kept my job.
For the most part, I tried to avoid talking about my jaundice, as if by ignoring it I would send the message that it wasn’t a concern of mine, and therefore should not be a concern of yours.
But every time I told you I was indifferent to it all, every time I laughed it off and made a joke and assured you it was no big deal, I was boiling inside with shame and embarrassment. What I didn’t say was how I had tried all types of ridiculous things to try to reduce the yellow in my eyes — changing my diet, getting more natural sunlight, drinking less coffee, taking dandelion root and B vitamin supplements, eating organic foods and using Visine eye drops. Nothing worked. I had no one to compare notes with, no one with whom to share tips or advice. I kept all these self-prescriptions and self-remedies to myself. I didn’t want anyone to know just how desperate I was.
My father was 63 years old, and his life of substance abuse was finally catching up with him. His kidneys were failing, and everything else was slowly breaking down, piece by piece. He had stopped drinking heavily, but it seemed as if it were too late. He was in the hospital on palliative care for a week before being discharged and allowed to return home, but he had to return for dialysis three times a week to have his blood taken out intravenously, cleaned of all its accumulated waste and buildup and pumped back in. The doctors didn’t know how long he had.
I had since moved to Oregon. I hadn’t seen my father in four years, and it was now imperative to fly to Michigan to visit him. He was impossibly skinny, and his skin was like old cracked leather. His eyes were more yellow than mine and spotted with red. He walked slowly and didn’t have much energy, so we would do what few things we could together, like going for lunch or shooting a couple games of pool. Somehow he still managed to win each game. He and my mother hadn’t spoken in years, but after he became ill, the two of them became close friends. They would go out for lunch once or twice a week and talk about old friends from way back, in another lifetime. She began helping him with his hospital visits, and she came to know his doctors by name. One day, his doctor confessed he did not know why, after all their treatments, my father remained so jaundiced. My mother said, “I can tell you why.”
MY FATHER HAD NEGLECTED TO TELL HIS DOCTORS ABOUT HIS HEREDITARY SPHEROCYTOSIS.
After living with it for 63 years, he hadn’t given it much daily consideration, and it hadn’t occurred to him to mention it to the people treating him.
My mother’s informing the doctors of his blood disorder instantly opened up new options and other measures of treatment. He still needed a kidney transplant—being put on the waiting list at the VA hospital is like waiting in line to play the lottery—and he still needed to go in for dialysis three times a week, but the doctors could do one thing right away, one thing that would at least slow the destruction of his cells, increase his oxygen and give him a little more energy. They could remove his spleen.
I was home in Michigan when my mother called. She gave me the news.
“Completely gone?” I asked.
“Completely gone,” she said. “It’s incredible. His eyes are white. Well, no, they’re still pretty red, but the jaundice is totally gone.”
She handed the phone to my father for confirmation. It was true. Almost immediately after the doctors had removed his spleen, my father’s energy had improved, and his jaundice had disappeared. Maybe I’d only been waiting for the right moment, or rather, to someday meet someone, anyone at all, who had undergone this surgery and who could say to me, unequivocally, “I have what you have, I did what needed to be done, and I am better off for it.” I hadn’t imagined that this person would be my father.
On the day of my surgery, I arrived at the hospital in slacks and a button-down shirt, but as soon as I got to my room, they had me change into a flimsy backless gown. They lay me on a bed with wheels and administered the sedative, and the next thing I remember was blinking my eyes awake, surgeons in full dress, casually moving about the room.
“When do we start?” I asked.
“All done,” one of the surgeons said, peeling off his gloves.
“Yes,” he said. “It was a success.”
All these years living with that thing — destroying my blood cells, living inside me like a parasite, like an assassin — and, just like that, it was gone. I asked if I could see it — as though it were my child they had just delivered. They ignored me.
It has been four years since my surgery. I’ve learned to look into people’s eyes and hold their gaze. I’m not obliged to offer my medical history to every stranger who asks. It took me some time to recognize my reflection in the mirror, but once I did, I couldn’t stop looking.
During my last visit to Michigan, with my mother watching, I finally beat my father at pool.
“Well, well,” he said.
Afterward, the three of us went out to eat. We talked about the weather, travel plans, the future.