Forever on the Cusp: The Bill Matthews Story

The former prep star harbored Olympic dreams before a seizure disorder and two brain tumors stole his greatest gift.

Philip Latter

The first time Bill Matthews VI’s brain started firing off misguided electric impulses, he sat with his University of Georgia roommates watching Terminator 3. Outside Athens baked under the summer sun, the humidity thick and clinging to every surface. It was a nuisance but not a deterrent; no matter the weather, Matthews and his teammates would get their afternoon run in. There was no other reason to be on campus in early August.

Matthews qualified for the 2008 Foot Locker National Championship after winning the South Regional

Matthews qualified for the 2008 Foot Locker National Championship after winning the South Regional

Preseason practice was a time of team bonding and narrowing life’s focus down to the essential task of getting as aerobically fit as possible. Matthews blended in among his skinny teammates, but scoring him as a recruit had been a coup for the Bulldogs. As a high school senior in 2008, he won the prestigious Foot Locker South Regional, making him arguably the best scholastic cross country runner from Virginia to Texas. When he then went on to run 4:11 in the 1600 meters and 9:08 in the 3200 meters, he found coaches from powerhouses schools like Wisconsin and Oklahoma State flying to his home in Alabama to offer full scholarships. The attention was exhilarating and gratifying.

It was also gone, at least for the moment. Matthews had been repeatedly humbled his freshman year, and even his greatest race – a 14:17 5,000-meter race at the Mt. SAC Relays in California – was soon followed by a 44th out of 46 showing in the East Preliminary of the 2010 NCAA Track and Field Championship.

These disappointing performances fueled Matthews through the lonely summer months of training. Back in Athens, he was ready to turn off the TV and step out that door. Really, he was. Except something was changing deep inside his brain.

“It’s hard to describe, but I had this feeling come over my body,” Matthews says. “I had no idea what it was. I just said, ‘Call 911.’”

As a teammate grabbed a phone, Matthews spiraled. “I felt like my stomach was splitting into a million pieces,” he says. “I legitimately thought I was going to die. I didn’t know what it was. The only three things I thought it could be was an aneurysm; some kind of heart attack, because my chest was in incredible pain; or a stroke.”

Matthews woke in the ICU several hours later. Disoriented and confused with no memory of what happened, he waited for the attending physician and nurses to explain the IV and monitors and 24-hour supervision.

They said he’d suffered a grand mal seizure.

It didn’t add up. Matthews suffered a seizure at the age of six, but nothing in the thirteen years since pointed toward any further problems. He figured he just needed to eat better and get more sleep, the classic panacea for all college athletes (and, let’s be honest, most Americans). The doctors thought otherwise. Matthews was diagnosed with epilepsy.

Over the ensuing weeks, Matthews and his parents received a crash course on the neurological disorder and modern American pharmacology. More than the electroencephalograms (EEG) to monitor brain activity and the endless hours killed in waiting rooms, it was the medicine that affected Matthews. Strong anticonvulsants like Keppra and Lamictal entered his daily life, as did their side effects. The seizures abated for a time, but the Keppra decimated his hemoglobin levels. Matthews slowly became anemic. With his body unable to properly transport oxygen to working muscles – a major prerequisite for distance running success – Matthews was forced to redshirt his sophomore cross country season.

“Psychologically that kills you, to know that no matter how hard you work, how well you take care of yourself, you’re still probably 20 percent behind your normal self,” he says. “I’m telling you the difference between being on the drug and off the drug is truly amazing. It’s the opposite effect of being on EPO (that’s shorthand for erythropoietin, a red blood cell booster often abused by endurance athletes like Lance Armstrong). It’s essentially a performance de-hancing drug. But it’s the one thing potentially keeping me seizure-free.”

Three months after his first seizure, Matthews and some non-varsity teammates traveled to his hometown of Birmingham, Alabama, to cheer on the Georgia Bulldogs competing at the NCAA South Cross Country Regional. In the middle of a long run on the course, Matthews “hit this strange little wall.” It ended up being another grand mal seizure.

“That seizure said the medicine wasn’t working,” Matthews says. “Then we went through increasing the medicines, but my performance and my running just kept going downhill. That was just so frustrating and depressing to watch that happen and know there’s nothing I can do about it.”

The next year of Matthew’s life played out like a similarly broken record. Doctors increased his Keppra levels. The seizures calmed down. His running suffered. Matthews asked to lower the levels. His training improved. The seizures worsened.

Matthews knew his situation was wearing thin on the Georgia coaching staff, and after a falling out with the head coach, he asked for a release and transferred to Wake Forest University in Winston-Salem, North Carolina in 2011. During a four-mile tempo run on the track, one of his first truly hard sustained efforts since being diagnosed with epilepsy a year before, Matthews began to feel disoriented and woozy. With two laps to go, he staggered off the track and collapsed in an unconscious heap. This came on top of another troubling development – minor seizures that affected his vision and forced him to stop on almost every single run. Wake’s medical staff declined to let Matthews compete the rest of the season. They also suggested he get an MRI of his brain.

That December in Birmingham, Matthews entered the pulsating tunnel and came out with a stunning diagnosis: a brain tumor. He and his mother cried in the doctor’s office. Further testing was needed, the surgeon explained, but if it proved to be malignant Matthews might be in for a long course of chemo. As they left, a medical technician approached and asked if they were okay.

“At that point, I’ve got a tear rolling down my cheek. I’m like, ‘How could I be okay? I’m 20 years old and someone told me I might have to have chemotherapy. What do you expect me to do? Just walk out of there like I’m fine?’”

“It was,” Matthews continues, “definitely the worst Christmas I’ve ever had.”

II.

Matthews’ story arrived in my inbox like a giant, slightly belated Christmas gift in February 2013. My old editor at DyeStat.com, Dave Devine, had interviewed Matthews back in high school and through a chance glance at a Facebook post, realized he was going through an ordeal almost no one in the running community knew about. The story was about a runner, sure, but it had a more universal quality to it.

Devine concluded his email by saying, “Given your interest in the intersection of running and medicine, the compelling human interest nature of this story, my recollection of Bill as a really solid kid and great interview, and the fact that he's in North Carolina, I thought this might be something of interest.”

It certainly was. In my mind, it read like the Myth of Sisyphus come to life (not that I ever read the Greek story of Sisyphus or Albert Camus's essay – it should be pointed out that for a professional writer and literature major, I am horribly deficient in the classics and absolutely abused Spark Notes and Cliff Notes to get through ancient and/or dense reading in my undergraduate days). Here was Matthews, struggling to reach his peak running potential while pushing against the boulder of seizures. And every time he came close to that peak, the giant boulder came crashing down in a sea of grand mals and brain tumors.

I hated that Matthews was enduring this soul-crushing nightmare, but dreamed of telling his story. Trouble was I had no contacts beyond niche running magazines and websites. One editor figured it didn’t fit well in their training-based magazine. Another had (unbelievably!) a similarly tragic story in the works. My strongest lead came from former Sports Illustrated senior writer David Epstein, an acquaintance I met while we were both in Iten, Kenya, working on unrelated stories. He believed that he could get this across his editors’ desks and offered to help me shape the pitch. I practically did backflips. There was just one problem: Epstein was about to become famous (and busy) with the release of his soon-to-be bestseller, The Sports Gene. He was also about to leave Sports Illustrated.

My contact list drained, and with a new baby and my first book contract on the way, Matthews’ interview sat alone on my recorder. But I couldn’t get it out of my head. It seemed somehow familiar.

III.

Matthews traveled from Alabama to New York to have the brain tumor removed in January 2012. The surgery would be performed by his father’s old swimming teammate. Knowing he was in good hands, Matthews rested well. He joked with the nurses until the anesthesia took hold and brought him into a deep, dreamless sleep. 

Upon waking Matthews found visible wires protruding from his skull, his head gently bandaged. The plan called for him to remain as still as possible. In the midnight haze of the anesthesia, Matthews still felt surprisingly calm. But as his consciousness level rose, the pain increased. He asked for morphine.

No, a nurse said. In order to properly monitor his post-surgical brain activity, painkillers of all types were forbidden.

“I was just in an excruciating amount of pain as you can imagine,” Matthews says. “I mean they cracked my skull open and took a tumor out. For four days I couldn’t sleep, I couldn’t eat, I couldn’t get anything down my throat because I was in so much pain. All I could do was throw up. Legitimately two or three times a day, I’d just vomit everywhere.

“I’d swear I could see hell from there. At that point I’d tell the nurses I think I’m going to die now. I’m in a world of pain, and I just can’t do this.”

Compounding matters (and for anyone who is squeamish, you might want to just skip this paragraph) was a recurrent issue with the Foley catheter extending into his bladder. Several times nurses rerouted it through his ureter, only to have it blocked and immediately withdrawn. “I wouldn’t wish that upon my worst enemies,” Matthews says, quite convincingly. “At one point I remember thinking, I don’t know if I want to die or keep doing this.”

Despite those hurdles, the surgery was deemed a resounding success. The tumor proved benign. The grand mal seizures stopped. So did the pesky petite mal seizures that affected his vision. After three symptom-free weeks, Matthews went out for an easy run. Almost as soon as he started, his vision blurred.

“That was almost as depressing as finding the tumor,” he says. “To have gone through all that, all that pain, and still have these seizures happening . . . It was just depressing.”

Sensing he was out of options, Matthews resumed training. His ran upwards of 90 miles per week, even while taking Sundays off. He pushed through the small daily seizures, pausing his run until the vision issues passed. Matthews and his doctors played around with different doses of Lamictal and Keppra, but the side effects remained.

“I don’t know how I didn’t quit when all that was going on,” Matthews says. “I don’t think there’s many people who would’ve kept going with those circumstances.”

By the fall of 2012, Matthews felt he was making progress. He competed in a Wake Forest jersey several times during that cross country season. These weren’t all-out efforts; running intensity and seizure intensity were still positively correlated, making a full-on race a risky venture. Matthews’ talent allowed him to contribute to the team, even in his diminished capacity. As the workouts and moderate races progressed, he and head coach Brad Hunt started dreaming of the ACC Conference Championship in Blacksburg, Virginia, as the moment where he could reassert himself among the best runners in the Southeast.

“Coach Hunt and I thought this was going to be big-time,” Matthews says. “It’s going to be a coming out party, we’re going to kick some ass. As you can imagine I was getting really built up over that. I was ready to come out there and prove I’m back and just as good as I was in high school. I was so angry with my past. I wanted to make a point.”

For two nights before the race, Matthews hardly slept. He tossed and turned, dreaming of returning to the pinnacle of the sport that had come to define him. But sleep deprivation is also a major risk factor for severe seizures. “I knew I was heading in a bad direction,” Matthews says.

On the starting line, Matthews’ legs felt lethargic and heavy. He could “feel the storm coming.” From the gun he was in the back of the field, his wham-bam-thank-you-ma’am dream performance out the window before the first mile of the five-mile race. Instead his vision blurred. For a moment he could see clearly again. He tried to reengage the race. Then the world went black.

Matthews woke up in the Virginia Tech trainer’s tent. His season had ended in a grand mal seizure at the three-kilometer mark of the ACC Championship.

IV.

Twenty-three years ago this April, I woke up with a moderate headache on the left side of my head, directly behind my eye. It was agitating enough that I asked my mom for some Tylenol and received permission to skip Sunday mass. I settled into my parents’ waterbed, closed my eyes, and waited for the acetaminophen to do its job. When I woke, the headache was still there.

It was there in the afternoon, too.

And that evening.

And the next day.

In fact, it never left. For every single second of the last 23 years of my life, I have felt its constant companionship behind my left eye.

Its genesis remains a mystery, but even getting a simple diagnosis proved too much for tens of doctors to handle. Maybe it’s because the onset was early (I was 10) or because I am male (the majority are females), but doctors never assigned me the most logical condition: chronic daily headache.

Even that term is slightly misleading. A chronic daily headache sufferer is defined as someone who experiences a headache 15 days or more each month. Those of us who have it every single second of every single day are a much rarer breed.

Without a clear-cut diagnosis, I became subject to the incredible world of referrals and specialists. Over a three-year period, I saw doctors who diagnosed and medicated me for sinus infections, migraines, allergies and tension headaches; in 1994 alone, 40 different drugs entered my bloodstream, including narcotics like codeine. I was given a self-injecting migraine medicine in between CT scans and MRIs that ruled out brain tumors. I even went under the knife to have a deviated septum repaired and some cysts removed. Not one reduced my pain level by so much as a point on the pain scale.

(Speaking of pain scales: Headache sufferers are often asked to rate their pain on a scale of 0 to 10, with 0 being non-existent and 10 indicating a degree of suffering so intense that it results in banging your head against a wall, screaming obscenities and no shortage of suicidal ideations. My baseline head pain is a 4, which is very manageable and goes unnoticed at this point unless I consciously think about – like when I’m writing an article about my headache. I’m actually quite lucky.)

When all those treatments failed – and as I became increasingly depressed and lethargic – my father started steering me toward alternative medicine. We saw a chiropractor who never used her hands, a cranial specialist who manipulated my auras, and a Russian “doctor” who used a pair of headphones to diagnosis my spleen as weak (seriously, I have no idea what was going on there). Acupuncture, acupressure, massage therapy, isotonic water, cold compresses on my eyes, essential oils on my temples, a wheat-free diet… The list grew with each passing year.

More disturbing was the bottoming out of my social life. For years I was labeled smart and quirky, but I still had enough friends to host a respectable birthday party. Then in fifth grade, right around the time my headache started keeping me home on weekdays, a rumor circulating that I had French kissed a dog at a friend’s house. By seventh grade I was just called “Dog F****r.” As in, “Hey, Dog f****r, get out of my way.” Or sometimes, “Hey, Dog F****r, pass me the ball.” And who doesn’t love of a good dose of, “Hey, Dog F****r, why did you f*** that dog?”

(Give my classmates on the yearbook committee credit. You can’t write “Dog F****r” in a Catholic middle school memory book. Instead, on the “Can you ever imagine…” page, they wrote, “Philip not liking animals.” Funny stuff, those kids.)

As the headaches worsened, I missed more school. As I missed more school, I became more socially awkward. With more social awkwardness came more bullying, harassment and depression. To avoid that daily hell, I would often fall asleep at night dreaming of a good headache. That way when my mom and I battled for an hour in the morning over school attendance, I wouldn’t feel like I was lying. I won a lot of those battles, missing school 42 times in sixth grade and 65 times in seventh grade.  

One night I wrote a letter to God, telling him I’d spread his gospel if he’d just make the pain end. I also spent one evening with a steak knife against my chest on a mildew-ridden carpet in my family’s upstairs bathroom. I kept it hidden by my bedside for a year.

I didn’t know the myth of Sisyphus then, but I understood downward spirals.

V.

The Monday after ACCs, Matthews walked into coach Brad Hunt’s office and laid it on the line.

“For two years I haven’t had any reason to keep running,” he told Hunt. “I haven’t had anything positive  happen in the past two years that would give me any reason to continue. I don’t know what I want to do. This is just a constant battle, and I can’t win. There’s nothing I can do to win. It’s not giving me any opportunities to win.”

Hunt told Matthews to take as much time away from running as he needed. For six weeks, Matthews obliged. Then he and an old high school teammate ran up a mountain. It ended up being a 13-mile jaunt. By the time Matthews finished, he’d badly strained his groin muscles and required additional time off.

That’s where the story ended in February 2013, when I first spoke to Matthews. He knew he still had many obstacles to overcome, but believed that once the groin healed he would be right back on track.

It never happened. The small seizures continued to recur over and over again, and with their persistence came increasingly higher doses of Keppra.

If this story has a low point, it occurred during the winter of 2014, after another failed comeback attempt. Matthews learned his grandfather was gravely ill, and he and his family immediately set out to see him at his home. As they drove, they received word that he had passed away. Pulling up into his now-deceased grandfather’s driveway, Matthews suffered his first, full-blown convulsive seizure in the backseat.

“I woke up in the house, and it took a little while, but I realized [where I was] and that my grandfather had passed away,” he says. “I was just lying in bed, and I told my dad, ‘This is not the life for me. This is not the life I’m supposed to be living. I’ve been so successful up to this point, and now I have these health issues. This is not where I should be. There’s got to be a way.’”

After calling up his father’s friend in New York, Matthews underwent another EEG. After presenting the EEG to the monthly meeting of the North Carolina Board of Neurology, he was diagnosed with another brain tumor. In April 2014, Matthews returned to New York and underwent a two-part surgery to remove an unrelated, benign, and very large tumor . The first phase used highly sensitive wires to determine what parts of his brain were affected by the seizures. The second involved the removal of the tumor and damaged brain tissue.

Once again Matthews’ post-surgical recovery was grueling and without the aid of medication. At home he fared no better. Running seemed a distant memory as he lay in bed for days at a time, incapable of the most basic tasks. I waited for the familiar refrains, but then Matthews said something I never thought I’d hear.

“Believe it or not, ever since then I've been seizure free.”

VI.

My parents saved my life by tricking me.

It was the summer before eighth grade, a grade I never would have reached had my school principal not spent long hours tutoring me in the finer points of pre-algebra. His benevolence promoted me one step closer to high school, but it wasn’t until my parents dropped me off at the inaccurately named Cherry Hill Center that everything changed.

“Just give it a try,” my father said, just before I entered the usually sterile, florescent-lit waiting room that instead turned out to be a wood paneled rectangle the size of my bedroom. It offered a small assortment of magazines and books and even a coffeemaker, but lacked a receptionist or sign-in sheet.

“Wait, where are we?” I asked.

“We’re not making any judgments,” my mother said. “Dr. Uhler highly recommended him.”

“What kind of doctor am I seeing? I thought this was about my headaches.”

“It is,” my father said. “Now go inside.”

“A psychologist? You’re dropping me off with a shrink?”

“I’ll just wait in the car,” my mom said, as Dr. Clark descended the stairs of the old house-turned-office and took me upstairs. (I never bothered to ask her if it was because she felt stigmatized by being in a mental health clinic or because the wood paneled walls were too dated for her eyes, but I mean who voluntarily chooses to sit outside in a 1987 Oldsmobile station wagon?)

I couldn’t believe it. My parents thought I was faking my headache.

The author's hero, Dr. Clark Barshinger

The author's hero, Dr. Clark Barshinger

Once upstairs, Dr. Clark offered me a comfortable seat near some dormer windows. He bore a passing resemblance to Kenny Loggins (in a good way), and far more importantly, volunteered to listen to me for an hour at a time.

I liked to talk, and given that an entire table of former friends liked to play this game at school where they pretended I was invisible, it seemed like an opportunity I should take. I told Dr. Clark about my brother Michael, who passed away before I was born, and who I believed I was closely connected with. He heard about my strained relationship with my Nana, who lived in Florida, and who surprisingly didn’t know we had a strained relationship. We talked about being bullied and how hard it was to be a kid and looked at some coping strategies to keep me in school.

Mostly, though, we talked about the headache. What its causes were, what its effects were, how we could try and treat it. Dr. Clark knew I wasn’t faking it, but he was wise enough to realize that many other problems served as triggers that increased the headache’s intensity. I believed I had the weight of the world on my shoulders, and as Dr. Clark pressed against them with his hands, he explained I had quite literally manifested that very idea. I told him there were days I wanted to die.

Dr. Clark offered to hypnotize me, and I balked at the thought that a mind as active and cunning as mine could ever be placed into a different state. I believed that all the way until I saw green and exploded in a most violent outpouring of tears. I didn’t know if it was the presence of my dead brother or a tension knot in my shoulder releasing or merely the stored up social angst of a bullied 13-year-old all exploding in one momentous occasion, but I saw green. That’s all I know to say.

Something changed that day. Things remained bad in middle school; I would be Dog F****r and the butt of every joke until I escaped to high school (where an infusion of 20 different Catholic middle schools would wash out most jokes and give people like me a chance to start anew). But I put my uniform on every day, whether I wanted to go or not.

Bit by bit, the headache relaxed. Most days were spent around a level 4 or 5; on bad days, the duration decreased. Instead of bashing my head against my bedroom wall as a hammer pulsated behind my left eye, I started running and dating and getting comfortable around my peers again. The suicidal thoughts backed into a corner where they could be controlled by reason. “This level 8 isn’t going to last forever,” I could finally say to the headache, “so stopping looping depressing songs in an effort to make me end the pain once and for all.”

I started thinking maybe this headache is a blessing in disguise. Maybe it is expanding my understanding of the world, acting as some sort of conscience and moral compass that is leading me to a greater place. After all, no doctor could solve my case or even give me a real diagnosis. That must make me special.

Then I read the book All in My Head and realized others suffered just like me. I wasn’t unique. I just had an overly sensitive brain and a quite possibly pissed off trigeminal nerve that was translating feedback into pain for no good reason at all. It had nothing to do with my shoulders or my dead brother or God. It was neurological after all.

Sonofabitch.

I was depressed for a week. And then I decided to continue on with my life the way I’d known it. I would not get Botox injections in my forehead or nerve block therapy or have the trigeminal nerve cauterized or any of the other prescribed treatments for this type of chronic daily headache. They might make it better, I read, but they also might make it worse.

Sometimes it’s better to keep things on a par.

VII.

Almost a year has passed since Matthews last had a seizure. “It’s so liberating,” he says. “You feel like you’re a slave when you have seizures. They control your day. You’re just waiting for one to happen. You know if you haven’t had one yet, you’re going to have one coming. That’s the scary thing. You know if you've made it to three o’clock in the afternoon, it’s going to happen [on the run].”

Matthews and his fiancee, just after she accepted his proposal

Matthews and his fiancee, just after she accepted his proposal

While the seizures stopped, high doses of Keppra combined with months of lost training time kept Matthews from using his last year of eligibility. With no academic goals left to achieve, Matthews graduated from Wake in 2014 with a communications degree and recently accepted a position in Charlotte. He plans to stay in North Carolina with his fiancée, a fellow Wake student who told Matthews, “No one is stopping you from competing when you’re older. You’re past the brain tumor and no one is telling you you can’t do it.”

“No one else really said that to me before,” Matthews says.

While Matthews is certainly grateful for his health and hopes to add a Bill Matthews VII to the world before all is said and done, he still ponders that magical day at the 2008 Foot Locker South meet where the whole running world seemed open to him.

“It’s a daily hell because I can’t help but look up the results and see how former colleagues are doing,” he says. “It is tough. I see these people that I used to be beating and now they’re All-American, they’re breaking school and conference records, and I’m thinking I should be the one doing that. I should be running fast. I shouldn't be sitting here watching. And a lot of people don’t know my story, so they figure I just burned out or quit.”

Still, he knows he is lucky to be alive and seizure-free. 

“I think some people use running to define themselves,” he says. “Honestly, a lot of guys when they reach an elite level, they see their self-worth only as how fast they’ve run their last race or how well their last season went. You’re getting all this attention, and you’re loving all the recognition, and it fuels you. It makes you think you’re invincible.

“Now, no one knows who I am. It makes you reevaluate your life and figure out what’s important.”

It's a refrain I understood all too well.