Chasing My Cure Page 3

  I grew up a Catholic, and a hopeful one. I believed in the power of medicine, and the power of prayer to augment that medicine. An underpinning condition for my work ethic was a faith that if I did the right thing, and did it hard enough, the “right thing” would eventually win out. In my mind, the war would always be won before the first battle. If I hit the weight room and practice fields hard enough in the winter and spring, I knew that I could win the starting position and have success on game days in the fall. You get what you deserve. So far in my life, it had been mostly true.

  My mother’s death had opened my eyes to the possibility that this wasn’t true. Medical school lectures on genetics, health, and disease made this more clear. But it was in this moment that I realized—shockingly suddenly, as perhaps it is for most people when the penny finally drops—that life wasn’t fair. Did this woman deserve to have an exceedingly rare and lethal drug reaction? Well, if everything happens for a reason, then maybe it was meant to teach her husband a valuable lesson that he couldn’t have learned without bearing witness to her death. I didn’t really buy that. And then my mind—unleashed by this sadness—started to cast around for other examples of its faulty assumptions: What about the people who die due to genetic alterations that occur completely randomly at conception? Had those lethal mutations been divinely organized to teach some kind of lesson to the grieving families left behind? What about babies who die alone in orphanages? Who learns a lesson in their deaths? Sparked by this one senseless emergency room death, I saw in a flash that I couldn’t expect to be blessed with good outcomes just because I worked hard, made good decisions, and did the most I could do to help others. The bubble burst. Comeuppance! Everything that happens in life may not always be for the best. Perhaps this realization was well overdue. Somewhere in the back of my mind I understood there was a lesson here to be learned about my relationship with Caitlin. I held that thought at bay.

  TECHNICALLY I’M DISABLED. As a kid I was diagnosed with the hyperfocus variant of attention deficit/hyperactivity disorder. This helps explain how, even from a young age, I could do things like work out for hours or sit and watch game film on my opponents well after my teammates had lost interest.

  Don’t get me wrong—it’s not a superpower. It gets in the way of being able to move from one task to another. Like when you are in a constant state of missing the forest for the trees: When you hyperfocus, one tree can become very, very, very, very interesting.

  Ultimately, making sure that what’s interesting is also worthy and regimenting every minute into my calendar was the way I made my ADHD work for me (most of the time). My parents modeled what a life with the right priorities can look like; I borrowed, internalized, and used their strategies, and my iCal calendar took me the rest of the way.

  I grew up in Raleigh, North Carolina. My parents had immigrated to the United States from the Caribbean island of Trinidad so that my dad could go to college and then medical school. After medical school, they moved to North Carolina so my dad could complete a rigorous orthopedic surgery residency while my mother stayed home to raise Gena, Lisa, and me. I think it was from my mom that I most directly inherited my work ethic. She was a faithful Catholic and put her faith into action for our family and in the community. She worked tirelessly to make sure my dad, sisters, and I received the support we needed and learned critical life lessons. She often took me on trips to deliver food to elderly church members during the week. On weekends, we would go on charity walks, or work in soup kitchens, or volunteer at the North Carolina Special Olympics. Helping other people—being present for them—made her tick. It wasn’t just a nice thing to do. She believed it was her responsibility, and she loved it.

  My dad, the formidable orthopedic surgeon, played against type. He’s the most extroverted person I’ve ever met. He’s also full of opinions and stories—both of which he absolutely will share with you, whether or not you ask for them (or you’ve heard them before). It was from him that I absorbed a belief in education as the surest way to overcome barriers, something he learned from his own father, who lost his entire family in the Holocaust. My grandfather made a life for himself in Trinidad after the war, despite not being able to speak a word of English when he arrived there. He married my Guyanese grandmother, whose family had been in Latin America for generations, though she had roots from all over the world, including sub-Saharan West Africa. My mother’s family had immigrated to Trinidad from Europe generations before. My lineage is like Trinidad itself: a melting pot of culture, skin tone, and religion; I have one Jewish grandparent and three Catholic grandparents.

  My dad’s expectations for me and my sisters were very high: He wanted us to find a calling and to succeed as he had done. How could I not gravitate toward orthopedic surgery? I witnessed a parade of wheelchairs enter my dad’s office and then later, after surgery and his follow-up care, I saw people leave on their own two feet. His patients got better, all of them, no matter how complex the problem.

  But I also knew that medicine took up almost all of his time. He always seemed to be working. He left before I woke up and got home only in time for a late dinner. He was gone most weekends too, though to his credit he somehow never missed a single one of my football games. I guess his sideline attendance sent a message too: Success as a father was a priority as well.

  So while I idly puzzled over how I could be a miracle worker (in medicine) and yet still have time for the family I imagined I’d have someday, I focused my laser attention on succeeding in football.

  I began dreaming about playing quarterback for a Division I college team when I was seven years old. And by dreaming I don’t mean like at night; I mean every day, all day, all I thought about was football. Remember: hyperfocus. My dad was the doctor for the NC State Wolfpack football team, and I got to accompany him into the locker room and onto the sidelines for home games. Most games drew tens of thousands of fans, a fact that blew me away every time. And I was in awe of the size, speed, and tenacity of the players; they were like gods to me.

  By the time I got to middle school, I began to realize that natural skills and speed were not on my side. If I was really going to excel on the field, I needed to improve. A lot. I didn’t have the sheer natural talent that I already saw expressing itself in some of my teammates. I needed more skills, more athleticism, more everything. So I started training for hours every day. I worked out during study halls, as well as every morning or afternoon. I read books on exercise science and nutrition, and spent hours watching game film of myself and my opponents. I never got to be the fastest kid on the field, but I bet I had more charts on my walls than any thirteen-year-old in the country: progress markers for forty-yard dashes, mile times, throwing accuracy, and throwing distance. I trained hard, and I kept the receipts. I could see my investments paying off on the charts and on the field. I realized that even if none of us has control over the skills or talents we’re born with, we all have complete control over how hard we work.

  With my dad gone most of the time, and my sisters five and seven years older than I, my mother was in many ways my closest friend and ally. We even tossed the football together. But as my strength began to develop, I started throwing it too hard for her to catch. Eager to find a workaround, she created a system that would allow us to be together and her to help: She set up and stood near targets at the top of a hill behind our house, and she’d roll the ball back down to me after I tried to hit them. She never pushed me to play football. In fact, she would have preferred if I hadn’t played because she was so worried about me getting injured. But she knew I loved it and she wanted to support me, even if it involved rolling balls down a hill for hours. We loved and lived the motto “Practice does not make perfect. Only perfect practice makes perfect.”

  My high school football coach, Ned Gonet, saw my work ethic and upped the ante. He had played fullback at Duke and then in the NFL and was a legend in North Carolina football, a terror on th
e practice field. He was on my tail from day one. If I wasn’t perfect, he yelled at me. If I was perfect, he yelled at me for not having been perfect before. His pursuit of improvement was relentless, and it shaped how I felt about success from the beginning: It wasn’t ever some discrete position, some mark on the wall that we worked to reach. If that was all success was, we could reach it and then the work would be over. Ned taught me that success has to be dynamic—mine is and was different from that of the guy next to me, and it was also different from day to day. Training to be better than the next guy or the next team wasn’t the point; training to be the best possible was the point. When you reach a goal: push the goal back. In this context, criticism isn’t punishment; it’s the pull of the next goal, already calling out your name.

  Not that hard work guaranteed anything; I learned that the hard way. When I led my high school team to the state championship in my junior year, and lost, I immediately set my sights on winning the next year. Colleges had already been recruiting me, and I knew that football was as much a part of my future as it was my present. Then both of those timelines collapsed simultaneously. On the first scrimmage of my senior year, my collarbone snapped into three fragments. My dad looked at the X-rays and told me, flatly, that I would never play football again. Then he got to work. He operated on me the next day. Luckily he’s a better surgeon than he is a fortune-teller, and I was able to rejoin the team and take on the starting quarterback role by midseason. We actually made it back to the championship. A late fourth-quarter drive that I could have only dreamed of put us in the lead with a few minutes remaining. And then the magic ran out. We lost, again. There would be no fairy-dusted finale for me or my team.

  The championship loss was only part of my disappointment. After my injury, many of the colleges that had been recruiting me pulled back, understandably, and my dream of Division I football recalibrated from those images of my youth—the bright lights of the Atlantic Coast Conference, tens of thousands of fans, and nationally televised games—to the more academically focused confines of the Patriot and Ivy Leagues. I chose Georgetown. My opponents would include the Bears of Brown University, the Big Red of Cornell, and the Leopards of Lafayette. Academic All-Stars and future corporate executives up and down the depth chart. Big time for fans of highly strategic, disciplined football. So, while Georgetown was not a perennial football powerhouse, it was still Division I and it turned out to be a perfect fit. It gave me the opportunity to play football at a high level and emphasized the kind of service that my mother’s example had stamped into me as important. It also demanded the kind of academic excellence that my father valued. I would be a Hoya through and through.

  When my parents drove me up to Washington, D.C., for my freshman year, my dad was in high spirits, as usual, but my mother was unusually quiet. When I had a moment alone with her I asked what she was feeling, assuming she was sad about seeing her youngest leave the proverbial nest. Instead, she said she’d been having really bad headaches for a while, and she was confused about what was going on. But I continued—as eighteen-year-olds will do—to think her feelings were all about me. I told her it was likely stress related and not to worry about me. I’d be okay.

  Before my parents headed home, we all paid a visit to my new football coach. As we were leaving his office, a group of older players happened to be walking by. I won’t soon forget the awkward moment: While my mom supportively rubbed my back, my dad shook the coach’s hand and said, pleadingly, “Coach—take care of my baby boy.”

  The upperclassmen burst out laughing. And before the first day of class, I’d received my nickname, Davey Boy.

  I made better use of my next opportunity to make a first impression. A week later, we played our first seven-on-seven scrimmage, against Howard University, and I was quarterback. Five touchdowns later—and no interceptions—we rolled. I called home to tell my parents all about it. When my dad answered, I regaled him with the play-by-play, with all of my joy. He was silent. Eventually he spoke.

  “Your mom has brain cancer.” And although he didn’t need to say it, he went on. “You need to come home.”

  On the plane ride back to North Carolina—finally alone with my thoughts—eighteen years of memories swirled through my mind. My mother’s silhouette standing at the top of the hill behind my house. Sitting in church beside me. Staying up late with me while I studied for exams. Feeding people, nurturing them, helping strangers. Doing.

  When I arrived at Duke’s Brain Tumor Center, she’d already been taken into the operating room to remove as much of the tumor as possible. My father and sisters and I sat in the waiting room together, and we talked about the road ahead below a sign on the wall that said AT DUKE, THERE IS HOPE. The sign was comforting, but we understood that the complexity of brain surgery meant that survival wasn’t the only outcome to think about—we wondered if she’d be the same person after a portion of her brain had been removed. We wondered if she’d be able to speak. We wondered if she’d remember who we were. After we were told that the surgery had gone as planned and were at last allowed to see her, I huddled my family in the hallway and urged them not to cry in front of her. My logic was that if we were crying, Mom would worry about us, and that was precisely what she didn’t need to do at this critical time.

  No one spoke as we approached her bed. When she could see us, she pointed to her head, bandaged and attached to tubes and beepers. “Chiquita Banana Lady,” she said, smiling. We all laughed and cried tears of joy. We still had our mom. We had hope.

  The next day, when the doctors informed us that her tumor was a grade 4 glioblastoma, I told my sisters, “At least it’s not grade five.” I later learned that there is no grade 5; 4 is the worst. I didn’t ask about the average survival for someone like my mom—I asked about the longest that a patient with a grade 4 glioblastoma had ever lived. I was looking for any bit of hope to grab on to, even imaginary scraps and false leads. One of the doctors said, “I’m aware of someone living five years.” So, as far as I was concerned, that meant we had at least five years and one day to spend with Mom. Doing may have been her default mode, but she also instilled in me a belief that anything is possible with prayer. If anyone deserved a miracle, it was her. So I prayed.

  I didn’t want to go back to Georgetown, but my mom was adamant. She wanted me to pursue the dream I had been chasing since I was a child. I agreed to return to school after my sisters agreed to move home from New York City, where they had been living since college, and we all promised to see one another almost every weekend.

  My mother had lived the kind of life that meant she’d have lots of people adding her to their intercessions. One weekend that I was home I went to our pharmacy to pick up her chemotherapy prescriptions. The cashier, whose name tag told me she was named Kim, broke into tears when she learned whom I was picking up for. Apparently, my mom had frequently spent hours with her, talking through challenges that Kim was facing in her life. I knew what Kim was feeling. The role reversal was painful.

  Over the next few months I shuttled back and forth between Georgetown and home, and my family drove up to Georgetown for home games. I asked to be taken off the travel squad so I could go home during away games, a decision that I never could have imagined making just a couple months earlier but that was perfectly clear and easy at the time. When I was on campus, I felt completely alone. It’s not that I didn’t have great friends. But I didn’t have anyone to turn to who really understood, firsthand, what I was going through. As we fell into the rhythm of treatments and MRIs and hoping for good news, I began to appreciate the profound impact my mom’s doctors were having on her life, and on ours. My hyperfocus started to shift targets. Medical school had always been in the back of my mind, but now it was not orthopedics that was beckoning. I began to dream of helping patients in the way my mom’s doctors were so clearly trying to help her.

  But there was only so much they could do. Her memory began to d
eteriorate. Well—her short-term memory, anyway. She might forget to turn off the faucet after washing her hands, but when we watched home videos together she remembered all the moments relived on the screen. And then some: She sometimes filled in gaps in the footage or gave us the backstory to the scene. Many of these stories were totally new to me, and I was grateful and eager to hear them from her perspective. I spent the entire summer after my freshman year with my mom. We went to physical therapy, radiation appointments, doctors’ visits, and church together. We prayed often and hoped constantly. Even after an MRI showed that her cancer had returned despite the intensive treatments and was now inoperable, my mom said it had been the “best year ever” because our family had spent so much time together. Despite the chemo, despite the cancer, despite the radiation. She was dying with joy.

  I didn’t have the words yet, but now that I’ve gone through some of what my mother went through during her last year, I realize that she wasn’t just a kind and generous person; she was someone with a ferociously powerful will. I now see that “will” is that extra fight that emerges when there seems to be no more hope.

  One of the greatest signs of a strong will is being able to find a silver lining while fighting in the midst of the storm. The kind of willpower that my mother showed me was something else though. She didn’t just look for silver linings. She created her own silver linings. That last year really was a joyful time. That sounds almost impossible. It wasn’t. Her attitude toward that year was executive and authorial: She decided there would be good memories for her family after she was gone, and then she set about making them happen. For her and for us.