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The Art Of Coping With Brain Injury

Dutch artist Tom Heerschop aspired to be the greatest artist since Leonardo Da Vinci. Then he developed a brain tumor the size of a sweet potato.

In 2008, Amsterdam-based artist Tom Heerschop was in his kitchen on his son’s sixth birthday, about to cut the cake, when he felt a violent pressure in his head. “My head felt like a train was arriving, and I had to catch that train,” Heerschop says. “I ran downstairs. I heard strange sounds and smelled strange smells. I thought I’d gone completely crazy.” Outside, he had a seizure, his first. It lasted for 45 minutes.

After waking up in the hospital, Heerschop asked for an MRI scan. Doctors in the Netherlands don’t automatically administer MRIs to patients suffering from seizures, but Heerschop insisted. One month later, a scan revealed a benign tumor, the size of a sweet potato, in Heerschop’s brain.

Though tumor discoveries are not usually described as such, “it was a big relief,” Heerschop says. Finally, “everything made sense.” For ten years, he had been afflicted with severe depressions, violent outbursts, migraines, and personality changes. He illustrated these afflictions in his daily “Depression Diary.” In self-portraits from the diary, the artist’s brains explode out of his head, his face is pocked with greenish boils, his eyes are black caverns. Though he tried everything from psychoanalysis to singing bowl therapy, none of his symptoms responded to treatments. When the tumor was discovered, Heerschop realized, for the first time, that his psychological condition had a physical cause.

Though tumor discoveries are not usually described as such, “it was a big relief,” Heerschop says.

Growing up in Bussum, a town 20 minutes from Amsterdam, Heerschop loved to draw. “As a kid, I was in my most natural habitat when drawing,” he says. “It made me quiet and happy. Everywhere we went, I had my little notebook.” He attended a Waldorf School, known for its encouragement of children’s creativity. At 16, he started taking weekend painting courses, and by 18, had his own atelier. At the Rietveld Academie Amsterdam, a prestigious fine arts university, he studied photography, drawing, design, and painting, and graduated in 1996. Shortly after, he got married. He felt like he was at the top of his game, “in control, at ease,” and that showed up in his artwork: Crisp pencil drawings of barns, trees, and silos; quietly surreal ballpoint illustrations of bakers baking bread.

But when he was 25, getting his master’s in art at the Sandberg Institute, Heerschop felt his psyche shifting. He began to experience depressions of a depth he’d never felt before. Crushing headaches led a doctor to prescribe him painkillers. And though he’d “always been gentle,” he started to hit his wife. At one point, he broke her shoulder bone. “I knew something was going on, but I didn’t know what it was,” Heerschop says.

One of Tom Heerschop's larger murals, completed before his diagnosis.

One of Tom Heerschop’s larger murals, completed before his diagnosis.

At his wife’s urging, he tried various forms of therapy: Psychoanalysis, rebirthing sessions, hypnotherapy, acupuncture, tai chi, relationship counseling. “Therapists tried to figure out what was wrong with me—they asked about my parents, my childhood, work-related stress, stress with my former girlfriend,” Heerschop says. “It never stopped, and none of it helped at all. That went on for ten years.” Over those years, Heerschop and his wife had three sons. At first, he was a gentle father, but soon became temperamental and violent.

Drawing was one of his few non-destructive outlets, and he was wildly productive in the studio. He made more than 100 works a year and appeared in solo and group exhibitions in the Netherlands and Italy. “A drawing a day keeps the doctor away,” he wrote of his “Depression Diary,” begun in 2000. Some work from this diary is psychedelic, lighthearted, in fauvist colors: A fuzzy stuffed penguin and a ginger cat are recurring characters. But much of it is tortured: A man in a crown slices his own head off with a kitchen knife, his black ink guts spewing; webs of paint smother the faces of sickly men with purple eye bags; an Easter rabbit with a basket of eggs gropes a nude woman; a horned demon sits in a wheelchair; a pink body curls on a cot in a jail cell. Compared to the quiet, controlled drawings from Heerschop’s college years, these works suggest psychic chaos.

“Not once did anyone come up with the idea that maybe all my problems had something to do with something inside my body, instead of my personality,” Heerschop says in a 2013 TEDx talk.

By the time the tumor was discovered in 2008, it had been growing in his brain for at least ten years. It was a millimeter away from his ear and a millimeter away from his eye. If it had gotten any bigger, he would have gone blind and deaf. “At first, I thought I was going to die, but doctors assured me I would survive,” Heerschop says.

The operation that removed the tumor left a scar shaped like a backwards question mark curving from his hairline down to his ear. Though recovery from the surgery was tedious, “I felt born again, for a while,” Heerschop says. “It felt like a new start.”

But there was no happily-ever-after to follow. Even after the tumor was removed, Heerschop still struggled with erratic behavior and strange symptoms: Headaches, memory loss, fatigue, irritability, aggression. Sounds overwhelmed him. And, when he returned to the studio to draw, he felt slow and stuck. “In the past, when I made drawings, it was like opening a never-ending stream,” he says. “Now, this stream had dried up.” After Heerschop waited eight months for an appointment at a neuro-rehab center in Amsterdam, a neurologist diagnosed him with Acquired Brain Injury (ABI) in ten minutes. The tumor had done considerable damage to his frontal lobe.

Tom Heerschop as seen on his official website.

Tom Heerschop as seen on his official website.

An intensive neurorehabilitation program educated Heerschop about ABI and taught him coping mechanisms, like mindfulness and body scan exercises, which he now does for 35 minutes a day. “It leaves me feeling completely reloaded,” he says. “I’m trying to draw with more mindfulness.” But the damage is irreversible, and challenges persist. About every three months, he has a seizure. After working for 45 minutes, he’ll have to rest or take a nap. “Thinking is tiring. If a child is talking while the TV is on, those sounds together are too much for me.” But for the first time in his life, he knows the cause of these symptoms, and has a support system that helps him manage them.

After the surgery, Heerschop and his wife split up. Two and a half years ago, he reconnected, via Facebook, with Bregje deVries, a former girlfriend, whom he’d fallen in love with while “young and kind of restless.” Now, “less restless,” he lives with DeVries, an educational scientist, who acts as his agent and helps him manage his medications and schedule.

In a way, this disease helps me to be much more reflective in everything I do.

“In a way, this disease helps me to be much more reflective in everything I do,” Heerschop says. “So many people just go into work and work too hard to earn money and come home and don’t think about it. I really have to think about the worth of everything I do.”

Heerschop’s life story is front and center on his interactive personal website, designed earlier this year by Utrecht-based Studio Airport. In a black-and-white video loop, the artist stares out from the homepage, blinking, occasionally laughing or scratching his nose. When you click on his head, animated fragments of his drawings pop up: A purple lizard-creature flicks its tongue; a bug-eyed bluebird peeks into the corner; a bonfire sprouts from Heerschop’s forehead. “There was only one way to make this site: Putting Tom’s photograph as the front door you have to go through to get to the work, entering his head and following all the series of works that sprang from it through the years,” deVries says. Nearly 1,200 of Heerschop’s artworks are displayed in chronological series from 1996 to 2015. Together, the series of drawings tell the story of his illness from the inside out: You see the evolution from crisp, controlled monochromatic still lifes, to scrawled stream-of-consciousness works in riotous color, to drawings about the tumult and excitement of early parenthood, to the depression diary, to hallucinatory works made while recovering from surgery, featuring cross-sections of brains and slinkies popping out of skulls.

One of Heerschop's later drawings, made as he recovered from brain surgery in 2012.

One of Heerschop’s later drawings, made as he recovered from brain surgery in 2012.

Before his operation, Heerschop averaged one drawing every two days; now, he’s lucky if he finishes one in three weeks. Instead of aiming to match the machine-like output of his earlier years, he’s changed his approach, experimenting with large-scale, ongoing works. “I let go of the idea that you can finish a drawing. It’s much more difficult for me to make one single image—that blocks me, in a way,” he says. “I’m now trying to find a way to make endless drawings.” His most recent work, a nearly 30-foot long panorama in black marker on white paper, took four months to complete. Featuring serpents and phalluses emerging from flames, bodies with giant eyeballs for heads, missiles with legs, and fractal-like arrangements of pencils, it was an abstract response to the terrorist attack at Charlie Hebdo in January 2015.

“I’m not yet in a place where I’m making my best work after my operation,” Heerschop says. “He’s always doubting his work,” deVries says. “But I’m his biggest fan.” Despite the perilous setbacks, he doesn’t plan on retiring any time soon. “Drawing is more than a job— it’s my love, it’s my blood,” Heerschop says. “I’m gonna draw forever.”

Histories

“You Might As Well Live”

Chronic medical issues--including a genetic mutation which gave her her showstopper eyes--impacted much of Elizabeth Taylor's life, but never defined it.

At any stage of her storied acting career, Dame Elizabeth Taylor is remembered for her effortless glamour, and a lifestyle as high profile as her onscreen roles. Born in 1932 to wealthy American parents living in London, she enjoyed dual American-British citizenship that helped fuel her jet-set lifestyle later in life. For almost as long as she was alive, Taylor–who catapulted to success at age 12 in National Velvet–was a fixture in popular culture.

An iconic photo of Elizabeth Taylor for Time-Life.

Hiding behind a beautiful façade and generous philanthropy was a personal history of health struggles and setbacks that, for others, might have seemed insurmountable. But Taylor was undaunted. According to her later retellings of her childhood, coping with numerous conditions had little impact on her ambition and work ethic. If anything, it seems as though her work distracted her from what might have easily been a lot of self-pity. “I’m a survivor,” she once said. “A living example of what people can go through and survive.”

From birth, Taylor had health issues with which to contend. She was born with scoliosis, a curvature of the spine. From a young age, the spirited and talented adolescent worked long hours on film sets with little time to be stressed about her health. Still, her physical state was impacted by her work. In 1944, while filming her first major movie role in National Velvet, she broke her back falling off a horse; the injury, coupled with her already bent bank, went untreated for months and caused her lifelong chronic issues and pain. Even one of her most striking features, the lush eyelashes that rimmed her bright blue eyes, was the result of a genetic mutation known as distichiasis, which results in a second or “accessory” row of eyelashes.

One of Taylor’s most striking features, the lush eyelashes that rimmed her bright blue eyes, was the result of a genetic mutation known as distichiasis.

Tempering any tendency Taylor might’ve had toward self-pity about her health was her rather dramatic personal life. She was famously married eight times (to seven husbands; she married fellow actor Richard Burton twice) while steering a thriving film career. Even when she fell ill while filming—perhaps most notably, suffering from near-fatal pneumonia in 1961 during the filming of Cleopatra, undergoing an emergency tracheotomy that saved her life—she kept climbing the Hollywood ranks, becoming one of LA’s most bankable, beloved screen siren, and earning two Academy Awards for Best Actress, one for Butterfield 8 in 1960 and the other for Who’s Afraid of Virginia Woolf? In 1966, She was almost never heard complaining:  “I’ve been through it all, baby,” she said. “I’m mother courage.”

In fact, Taylor seemed more interested in alleviating the suffering of others than tending to her own health woes. She was an early celebrity supporter of research to treat and cure HIV/AIDS. In 1983, she co-founded the National AIDS Research Foundation, one of the two organizations that later merged to become the highly influential international nonprofit American Foundation for AIDS Research (amfAR).

Elizabeth Taylor as she appeared in National Velvet, the role that propelled her to stardom.

In the early 1980s, seeking treatment for alcohol and prescription painkiller addiction, she was one of the first celebrities to check herself into the Betty Ford Center and openly speak about her addiction struggles. Taylor was also a heavy smoker, which led to further battles with pneumonia later in her life.

There’s a school of thought that suggests a positive attitude can offer a sort of inoculation against being swallowed up by adversity. Taylor seems to have been one of those plucky people who, when faced with setbacks, felt even more compelled to survive and thrive. She was hospitalized over 100 times in her life, yet for decades, she was also one of the most famous, globetrotting women in the world. How else to square those two facts if not to suggest her optimism, persevering spirit, and joie de vivre fueled her desire to keep living life to its fullest? Indeed, one of her favorite phrases was, “You might as well live.” Plus, her tremendous wealth no doubt helped her treat and cope with any condition that might impact her ability to keep going.

“You might as well live.”

In the final two decades of her life, despite her outgoing personality, Taylor was mostly out of sight following several difficult diagnoses. In 1997, she was diagnosed with a brain tumor, which doctors removed without incident. In 2002, she received treatment for skin cancer. As is often the case when someone manages multiple conditions, Taylor’s social life was impacted—a particularly rough turn for someone who had thrived in the spotlight.

“I’ve become one of those poor little women who [has been] bent sideways. I feel so stupid and feeble that I can’t do the work I was meant to do because of my bloody body,” Taylor admitted in 2004, at age 72. “My body’s a real mess…. There must be some reason that God wants me to live. There must be something left for me to do. And I have to find out what that something is and go out there and do it.”

Taylor as Cleopatra in 1963’s Anthony and Cleopatra.

The following year, she showed up at Elton John’s Oscar party and even got out of her wheelchair to make the rounds. “I want to make sure people know I’m still alive,” she said at the time. In 2009, after joining Twitter, she tweeted after a successful heart procedure, “It’s like having a brand new ticker.”

Taylor’s resiliency was well known. Her Los Angeles Times obituary writer noted in a piece about the dozen years during which she kept updating Taylor’s life story as fans and Taylor herself lived through “Taylor’s nearly annual brushes with death.” In a Vanity Fair piece published following her death, Taylor’s friend and publicist Sally Morrison said that Taylor’s friends and family had a hard time accepting that she finally succumbed to congestive heart failure. “She’d come back from the brink so many times. We all expected her to do it again,” Morrison explained. At her 79th birthday party two months before her death, Taylor had crowed to the assembled guests, “I’m not dead yet!”

Taylor, later in life, recovering from surgery to remove a brain tumor.

“I’m a survivor,” Taylor once said. “A living example of what people can go through and survive.”

It was a lighthearted pronouncement from a woman who had, at one time, been among the most famous people in the world. The truth behind her statement was more sobering. Age is hardly a disability, but with older age does often come an invisibility, especially for women. Taylor didn’t complain about this so much as occasionally note how much her health issues had impacted her ability to stay engaged with the wider world. As she aged and her health complications naturally became more serious in nature, joking about her health may have been her best coping mechanism.

When Taylor passed away in 2011 after refusing further cardiac surgeries, her loved ones and countless fans knew it wasn’t without putting up a noble fight for many years. Her hopeful, joyous attitude continues to outshine any shadows her health struggles could have cast over her glittering legacy.

The Good Fight

Kids Fighting Cancer With Jokes (And Groucho Glasses)

Abbott and Costello, Laurel and Hardy, Jack Lemmon and Walter Matthau….Max Chawtko and Alex Travin?

It was another rainy day in Chappaqua, NY, and Max Chawtko and Alex Travin were bored. Stuck in their classroom for indoor recess, the two eight-year-old besties were desperate for something to do. Then inspiration struck. Max’s five-year-old sister had recently been diagnosed with brain cancer and they had a brilliant idea: tell jokes as a way to raise money to support pediatric brain cancer research.

Of course, since they’re eight-year olds, Max and Alex have a more roundabout way of telling the story.

Max and Alex.

Alex: I came over to Max and asked if he wanted to tell jokes with me and people will pay.

Max: No, that’s not what happened. Me and Alex were playing and decided to do something with jokes together. So we decided to make up something called Jokes for Scarlett. We wanted people to bring in five cents and then we would tell them a joke.

Alex: On the first day we offered free jokes. We didn’t tell that many jokes, and they weren’t that good. We were just getting started.

Max: We made a sign in the back of the classroom and wrote “Jokes for Scarlett on it.

Alex: A few people came back to listen.

Max: The next day, was indoor recess again and one kid brought in $20.

Alex: No, it was more like $5.

Max: No, don’t you know how to count your money? It was $20. And five other kids brought in money.

Alex: No, it was three other kids.

Max: No five. I know, how about we round it out and we say four kids?

Alex: We didn’t know people would come back with money. We gave Ethan a lot of jokes because he brought in more than five cents.

Max: No, he brought in a bunch of dollars. You should say more than five dollars. But he didn’t empty his piggy bank. He says he has lots of money.

Alex: At least that’s what he says…

Q: What do you call a mean cow?

A: Beef jerky!

The boys, known by their friends and family for their impeccable comedic timing and entertaining banter, realized they were on to something. As word spread and kids began to empty their piggy banks in order to hear a joke and support the cause, they boys began to dream big. They wanted to reach a larger audience than the kids at Roaring Brook Elementary School in Chappaqua, NY.

So, unbeknownst to their parents, they began telling their classmates that they would set up a table at their local farmer’s market. No stranger to fundraising–with the help of their parents, the boys had previously helped create a 40-person team that raised $30,000 for Swim Across America that previous summer–they quickly spread the word.

Alex and Max manning the first Comedy Kids event at their local farmer’s market.

“Suddenly, people were contacting me and stopping me on the street to ask how they could donate money and when the boys were going to be at the Farmer’s Market,” Robin Chawtko, Max’s mother, recalls. “I had no idea what they were talking about.”

Max: Our moms asked us to explain our idea to them. Then they asked us to come up with the name. It took us two business meetings to come up with that.

Alex: We went to Starbucks for our first business meeting. Our moms helped us with names. One idea was the Westchester Jesters, and another one was Two Stooges.

Max: But we liked Comedy Kids. At our meetings, we talk about our business.

The boys’ moms got to work and began taking the necessary steps to reserve a spot at their local farmer’s market, a popular place where their small town gathers on Saturday mornings to buy fresh, local produce and goods while catching up with friends. As the moms worked behind the scenes, Max and Alex began planning and got the word out.

They purchased a website, www.comedykids.org, and the boys began to advertise around town. They put up posters, told their friends, called the local paper and even appeared on their school’s morning announcements. Every morning, they told a joke and reminded the students and staff to visit them at the farmer’s market to help them raise money to support pediatric brain cancer research.

Q: What did the fish say when he swam into the wall?

A: Dam!

Max and Alex knew they could pull this off. They’re such close friends they finish each other’s sentences. They also bicker like an old married couple: their humorous dialogue entertains everyone within earshot.

Max: We’ve known each other for three years

Alex: No, no, actually more.

Max: I think four years. We met in kindergarten.

Alex: No we didn’t. We met at a library sleepover before kindergarten began. It was two weeks before kindergarten.

Max: Yeah, but we weren’t best friends then. We did play with each other.

Alex: But we didn’t sleep over. It was bring something that you want to have sleep over at the library.

Max: Oh yeah, and I brought Howie, a huge giant bear, remember him? It was as big as me at that time.

Alex: No it wasn’t.

Max: It’s more than five feet tall, and I’m about four.

Alex: You’re not four!

Max: Yes, I am. How tall do you think I am?

Alex:  I don’t know.

Alex and Max on stage at Saturday Night Live.

On November 5, 2016, they set up a table at the Farmer’s Market. They placed a box filled with jokes on top– some they created on their own and some they got from books or the Internet. Each person who approached the table was asked to make a donation in exchange for selecting a joke. The average donation was $20.

Comedy Kids had several hundred visitors that day. They also received donations via their website from friends and family around the country. Each time a donation is received online, the boys send a joke by video as a thank you. By the end of six weeks, they had raised over $20,000 – all of which was donated to pediatric brain cancer research.

Q: How do you drown a hipster?

A: In the mainstream!

The Farmer’s Market was their warm up act. Two days later, they decided to take their show on the road, via other children throughout the country. The boys hope to inspire others to use comedy to raise money for whatever cause they support. Max and Alex have developed a kit, free to any child, which includes joke cards, two t-shirts and two pairs of Groucho Marx glasses, that timeless comedic prop. Comedy Kids also provides tips on how to create a successful event, including location suggestions, how to spread the word and even how to contact the local news. They’ve already received orders from New Jersey, Texas and Hawaii.

Comedy Kids recently launched a podcast. The boys’ first interview was their friend Ryan; he taught them how to armpit fart. They have conducted several more, all no longer than seven minutes, and are currently in the editing phase. Max and Alex are also on social media, posting jokes, using hashtags and creating videos. They have a Facebook account, they tweet and they’re even on Instagram.

Max: We’re not comedians. We’re not like Billy Eichner or Ben Aarons.

Alex: Well, I consider myself a comedian; he doesn’t. I like the title.

Max: Actually, I am a comedian, I’m like Billy Eichner. Like Billy on the Street! He’s my favorite comedian.

Alex: The part he likes the most about Billy Eichner is the curse words!

Max: No, that’s not what I like the most! He asks questions to random people and makes weird faces to the camera. He’s like (makes a face)….

Alex: That makes you look meshuganah.

Q: What has 18 legs and catches flies?

A: A baseball team.

In May, the Comedy Kids were treated to the surprise of their lives: they were honored by the New York Yankees as part of HOPE (Helping Others Persevere and Excel) Week. That morning, the boys, their moms and sisters were brought to Manhattan where their first stop was Saturday Night Live. While standing on the stage, one by one five Yankees players walked out, greeted the boys and handed them a $10,000 check: $2,500  was donated to A Kid’s Brain Tumor Cure and the remaining $7,500 was given to their new campaign with the Dana Farber Cancer Institute. After reading cue cards and telling jokes to the Yankees, the Yankees had their turn to entertain Max, Alex and their families before everyone sat down for lunch.

After lunch, the boys headed to The Tonight Show where they met Jimmy Fallon, joined him in the “Tight Pants Dance” – one of their favorites, sat in his chair, gave him bunny ears, ate The Tonight Dough ice cream with him and told jokes on his stage. The highlight? Jimmy Fallon’s tweet: “Those kids were funnnnyyyy!!!” with a picture of Jimmy, the kids and the Yankees.

Meeting Jimmy Fallon. “Those kids were funnnnyyyy!!!

Q: How do you tell a snowman from a snowwoman?

A: Snowballs!

Once they arrived at the Yankees game – the only part they knew about in advance, Max and Alex were on the field for batting practice, met Yankee’s Manager Joe Giradi who wore their shirt throughout his pre-game interview, sat in the dugout, threw out the first pitch, received signed baseballs, ate in Legends restaurant and were presented with awards on the field. They Yankees beat the Kansas City Royals that day, and their day ended with high-fiving the team.

“They were shocked about everything – the whole day,” recalls Robin. “They repeatedly said it was amazing and awesome. The next day, they had a hero’s welcome at school.”

It all goes to show. It’s never too early to dream big, or try to heal the world with humor… one joke (and pair of Groucho glasses) at a time.

Essays

How The Beatles Helped Me Survive Brain Cancer

When you're getting your brain tumor blasted with protons, a masterpiece like the White Album goes a long way towards helping you keep your sanity.

The Beatles 1968’s double-disc record The Beatles (otherwise known affectionately as “The White Album”) has always been one of my all time favorites. But it wasn’t until I got brain cancer that I truly learned to appreciate it, and to understand some of its deeper truths.

For six weeks, I was locked down into a proton therapy machine for 45 minutes at a time, as millions of invisible particles bombarded my brain, trying to burn out the malignant tumor that was growing inside. It may be slightly hyperbolic coming from a music geek like me, but if not for The White Album, I might never have survived that time.

An original vinyl copy of The White Album.

When I was diagnosed with cancer, I had no knowledge of what proton therapy was, or what it entailed. As I was introduced to the treatment, my doctor described the process. It sounded relatively easy, burning out malignant tumor growth in the center of my brain. I joked with him: “So you’re going to shoot lasers into my head?”

“No,” he replied, deadpan-serious. “Proton beams are NOT lasers.”

“Will this be anything like the MRI machine?” I asked. I’d already had a dozen or more MRIs validating the shape and size of my tumor, so I already knew what the experience was like: the claustrophobic feeling of being trapped in that tiny tube, enveloped by blood-curdling blasts of big robotic rumbling. As a professional music critic, I found it especially discordant: an MRI test is the antithesis of music. Luckily they give you earplugs.

“No,” he told me. “You won’t hear a thing.”

But, luckily, that wasn’t true.

Bird’s eye view of getting your brain tumor blasted by protons.

When I disrobed and entered the proton room for the first time, the ambience was forbidding. It was a large space with a high ceiling, and the room was chilly as I lay down on the table. They fitted me with a custom-built hard plastic mask; it fit nugly to my face, assuring that the proton beam could direct its blast to the precise spot of my tumor. Once I lay down, the mask was clipped to the table, locking me–and my head–in place.

“Do you like music? We have a few CDs over here if you’d like to listen to something while we go through our business setting up,” the nurse asked me.

I get asked about music a lot, but I’m always hesitant to make suggestions. I feel like my brain is so full of music that I can barely pick out one or two songs without worrying that the whole piñata will explode.

Keep it simple, man, I told myself. “Do you have The Beatles?”

“Ah, we do! The White Album, does that work?”

“Oh my god, that’s amazing. Yes, please.”

A blessing from the universe. Everything about The White Album has fascinated me, ever since I first heard it. It represents an epochal moment in music history.

The year is 1968. The Beatles were splintering. After a couple months spent hanging out in Rishikesh, India with Maharishi Mahesh Yogi and smoking plenty of grass, The Beatles had written some of the best pop songs ever. But a different kind of cancer than my own had found root in the band. Experts differ on what it was: was it John and Yoko’s relationship? Was it Paul’s perfectionism? Was it Ringo’s feeling disrespected, or George’s deep dive into Hinduism?

Whatever it was, by the time they came together to complete one of their last original albums, they could barely be in the same room together. The record is entirely built piece by piece, like slowly healing scars.  Each song demonstrated the strength of the writer, but revealed how distant these individual band members had become from the group. Once complete, the work became one of the last records they’d ever make together.

The only thing that stopped me from dancing was the fact that I was locked to the table, getting my brain blasted with protons.

Despite the tumult, it just worked. And that record kept me sane, seeming to reflect my own experience of being treated for cancer in a space oddly melodic in its own discord.

Paul’s tongue-in-cheek rocker “Back in the USSR” starts with the sound of a jet plane taking off. It was an energetic  launch pad for my radiation room, but I found the humor in it: it always gave me a smile. The only thing that stopped me from dancing was the fact that I was locked to the table, getting my brain blasted with protons.

But that’s just the blast-off. Part of what defines The White Album is its melancholy edge. Although the tracks first seem saccharine sweet, each song has an undercurrent of pain, weeping, and need.

The only truly silly song, “Ob-La-Di, Ob-La-Da”, may have been a cute track, but it caused tumult within the band. Everyone hated it but Paul. But that song is quickly balanced out by the powerhouse of “While My Guitar Gently Weeps,” where George’s breath itself sounds like it hurts.

From there, we lead directly into “Happiness is a Warm Gun.” That’s what this album is to me: the happiness of a warm gun. Each and every song has a trigger: my nerves tingle, my body couldn’t move.

Rocking out on the therapy table.

“Martha My Dear” sings: When you find yourself in the thick of it. Just like I’m in the thick of it now.

I read “I’m So Tired” as a cancer song. I don’t know what to do. My mind is set on you? I’d give you everything I’ve got for a piece of mind. And forgiving the pun, do I hear that: I’d give anything for some piece of mind after all this.

So even though I’ve heard the White Album a thousand times, and will probably hear it a thousand more, I never really heard it like I did then. Every time I left the treatment room, I felt rejuvenated: the war on my cancer, the power of science and my own body, all melting away into the audiophonic bliss of an album that sometimes felt like it had been written just for what I was going through.

Not going to lie. Some days I felt the willingness to allow despair to win. Some moments I didn’t want to go to treatment at all. I went day in and day out for weeks. It was a tough time where my heart was constantly racing, and I was battling doubt at every moment. But music puts hope around me… and, more specifically, the White Album does it for me, maybe more than any other. And if I had to explain why, I’d say it’s because it’s an album that prays for you.

Music puts hope around me… and, more specifically, the White Album does it for me. It’s an album that prays for you.

Since the White Album is 93 minutes long, and my proton beams sessions only half that, the last song I heard every session was “Blackbird.” It’s a deeply peaceful track, where the titular blackbird chirps in the background, while Paul sings a haunting coda:

Blackbird singing in the dead of night

Take these broken wings and learn to fly

All your life

You were only waiting for this moment to arise

You were only waiting for this moment to arise

You were only waiting for this moment to arise

Now, my kids are asleep, and I’m listening to the record on my headphones, thinking about my treatment. The whole experience feels so distant, like it was all a dream or a strange piece of performance art. Perhaps when the White Album was put together, the band brought back bittersweet moments for them, too.

The Beatles playing together for the last time.

But the music of the White Album transcends The Beatles’ in-fighting, just like it transcends cancer and proton beams. It’s not about the regrets of the past, or the fears of the future. It’s just a moment, piercing into right now, whether that now is in your headphones or strapped to a table while protons get shot into your brain.

Later, when they played their last performance standing on a London rooftop, the end happened but then the “you” was the listener, us! We took that music and translated it into something beyond words, beyond The Beatles, beyond proton beams, beyond cancer. It’s just a moment, piercing into the now.

The way music is supposed to be.

Right now.

Essays

How Do You Talk To Your Kids When You Have Cancer?

My diagnosis is teaching me about fatherhood, and how to prepare my kids for the day when I'm not around anymore

Weeks before my son was born, I had my first seizure.

It exploded in epic grand mal fashion, turning the evening sky into the brightest rainbow I had ever seen. For a minute or two, the corner of Austin’s 3rd and Congress turned into a dance of brilliant color.

When I opened my eyes, less than a second later, I was strapped to a gurney, covered with blood.

The author and his son, Soren.

This traumatic turn of events was what led to me being diagnosed with oligoastrocytoma, a type of terminal brain cancer. But before I could even think about what this meant for me, I needed to think about what it meant for my pregnant wife–then in her third trimester– and the child that was soon to come.

I didn’t have long to think about it, though. Six weeks later, and only hours after my second brain surgery, my son Soren was born. The surgeons had only just finished closing the hole in my head with 140 staples, having just extracted the last visible traces of my tumor.

Ever since that moment, almost four years ago, I’ve been two things: a cancer survivor, and a father. I’m technically living on borrowed time, but my wife, Erin, and I do our best to keep moving forward. After Soren, we added a brand new set of twins to our already cacophonous lives, and I joined the ranks of stay-at-home dad to give myself more time to heal.

Each day brings new challenges — not as traumatic as chemo and radiation, but interesting in their own way, because beginning a family while dealing with cancer isn’t something most people have to go through.

Beginning a family while dealing with cancer isn’t something most people have to go through.

The moment my son was born, I was catapulted into the always moving, always changing world of fatherhood. Having a new child would have been difficult enough to manage in simpler “normal” circumstances, but adding the layer of this major health challenge caused the experience to go screaming past the sound barrier.

Before I had it, cancer was always a strange, black magic sort of topic to me. Until it was in my life, it was as mysterious as the stars in the sky. But every time I heard the pulsing of an MRI, smelled a radiation machine burn my skin, or felt the spark of an oncoming seizure, I had to learn a little more about how to speak about cancer–not just with adults, but to my children.

Soren at his first baseball game.

Soren and the twins aren’t quite old enough yet to fully understand the significance of my illness. They will someday soon, though. The other day, my one-year-old, Mira, looked me in the eyes and said “Hi!” I was delighted to hear her first word, but in the back of my head, I asked myself: how long until she’s asking me about my sickness?

At night, I think about what I will tell them when they start to ask about my cancer. Or maybe they never will, and it’ll always be just a normal part of their life. “My dad has brain cancer,” they’ll say to their schoolmates, as if-you-please as if I were a postman or fire fighter.

There’s a darker possibility, too. Will they be saying “my dad had brain cancer, but he’s not here anymore?” These are the thoughts that keep me up at night.

Will they be saying “my dad had brain cancer, but he’s not here anymore?” These are the thoughts that keep me up at night.

Right now, I’m just trying to share my love for them as openly and honestly as possible. I also want to show them that their dad isn’t afraid, even though there are private moments when I am, and think desperately about how much I want to live through this. 

And more than ever, I do want to live through this. The mere fact that I’m still alive–let alone feeling healthy now–amazes me. Yet I hold on to the deepest knowledge that, short of a major new medical advance, I am going to die of my disease someday. And yes, I am afraid of that, not just for myself, but for what this terminal diagnosis means to me and my wife and children.  

Mark, Soren, and the twins on a day out.

I work hard on my fear, and try to keep my voice level so that my wife and kids can’t hear it. Yes, my wife and I are scared shitless at times. But I don’t want my kids to sense that fear. Instead, I want them to understand: to be able to talk to them about what is going on inside of my body without focusing on the fear. 

So I talk to them about my cancer in a roundabout way. I try to teach all my kids as much about science and medicine as they are capable of understanding. New medical breakthroughs are happening all the time that could potentially cure me, so to my oldest, I’ll talk about neuroscience, so those breakthroughs will one day be grounded in something he understands, whether I’m here to talk to him about them anymore or not.  (Yes, you can talk about neuroscience with a toddler!) 

Whether I’m cured, or whether I eventually succumb, I want my kids to truly understand what their dad went through…

Whether I’m cured, or whether I eventually succumb, I want my kids to truly understand what their dad went through physically as well as emotionally. That’s why I write about cancer elsewhere, and why I’m writing this. There’s no easy way to talk to your kids about having terminal cancer. But while I’m still here, I’ll do it as best I can: with integrity, and without fear.

Because even if I die, I want my kids to one day know that because of them, I won my battle with cancer. Their presence in this universe would have been impossible without me; to have survived long enough to help give them life has already made my life valuable. This strange experience of having a body, a somewhat mis-calibrated one, a mis-created one, was a part of their life story. And  because of that, to understand themselves, they’ll need to understand cancer too.

 

Histories

The Left Foot Of The Fastest Woman Alive

Although her leg was deformed by polio as a child, Wilma Rudolph didn't let her illness stop her from reaching Olympic gold.

In her time, the world-record-setting sprinter Wilma Rudolph was often referred to as the “fastest woman in the world.” In the 1960 Olympics, she won three gold medals in track and field.

Every race was extraordinary. Her 100-meter sprint at the Rome Olympics on September 2, 1960 lasted just 11 seconds, the fastest-ever recorded time for a women’s run.

Rudolph wasn’t just fast. She beat records only after beating the odds.

Wilma Rudolph, shortly after winning the gold.

Wilma Rudolph, shortly after winning the gold.

As a teenager, she trained as a sprinter despite a deformed left foot that kept her bedridden as a child, one of the lingering effects of polio that she contracted and ultimately beat at age 6.

Born prematurely on June 23, 1940 just outside of Clarksville, Tennessee, Wilma Glodean Rudolph was the twentieth of her father Ed’s 22 children (the sixth of her mother Blanche’s eight). She contracted polio when she was just four years old and was forced to wear a metal leg brace to help correct the condition’s impact on her lower left limb.

Rudolph told ESPN that she spent most of her bedridden childhood trying to break out of the brace but added, “When you come from a large, wonderful family, there’s always a way to achieve your goals.” It helped that her many siblings would take turns massaging her legs every day. By age 6, she could hop on one foot; by age 8, she was walking with the leg brace.

In her 1978 autobiography, Wilma, Rudolph explained how she stayed optimistic: “My doctor told me I would never walk again. My mother told me I would. I believed my mother.”

She also wrote, “My father pushed me to become competitive. With so many children, when you did something with one, you always had another along. He felt that sports would help me overcome the problems.”

It wasn’t just polio that nearly sidelined her. Rudolph also suffered from and survived a number of other diseases of the day, including whooping cough, the measles, double pneumonia, and scarlet fever. The latter two nearly killed her.

But by age 11, she was on her feet—literally.

The story goes that her mother came home to find her playing basketball barefoot.  She began competing in various middle school sports and “challenging every boy in our neighborhood at running, jumping, everything.”

wilma-rudolph-p

Rudolph spent her whole life running.

She was an especially talented basketball player and tried several sports before famed track coach Ed Temple spotted her potential and recruited the burgeoning star to be his protégée. At the time, Temple was a volunteer coach while also working as a sociology professor at Tennessee State University in nearby Nashville. He went so far as to drive his team of so-called Tigerbelles to meets in his own car and personally paid to have the school’s unmarked dirt track lined.

Rudolph first competed in the 1956 Melbourne, Australia Olympic Games, winning a bronze in the 400-meter relay race. Back at home, she secured a scholarship to attend Tennessee State where Coach Temple continued to train the young star, as well as several other young African American women Olympians. In 1959, she won gold in the 4×100-meter relay at the Pan American Games.

Rudolph’s banner year was 1960, when she went to Rome and won Olympic gold multiple times—and also set a world record. But fate nearly tripped her up again when, the day before the 100-meter dash, she stepped in a hole near the practice track, twisting her ankle hard.

She iced and compressed her foot and soldiered on, beating even reasonable expectations. She easily won the 100-meter heat, quarter-final and semi-final in what should have been a world-record 11-seconds flat. Were it not for a strong wind advantage, she would have taken the record plus the prize for her quick dash.

In the 200-meter, she set a new Olympic record of 23.2 seconds in the heats and won the final with 24 seconds. For this, the title “fastest woman in the world” stuck. She then anchored the relay team again, helping her teammates to come from two yards behind to win the gold with a three-yard victory in a world-record 44.5 seconds.

Her celebrity came at an awkward time in world history. Focusing both on her race and speed, the international press imposed a range of dated nicknames. The French media, for example, dubbed her La Perle Noire, or “the black pearl.” When she arrived home from the 1960 Rome Olympics, the ticker tape parade celebrating her victories was slated to be segregated. She claimed another victory when she flat-out refused to attend her own procession, forcing Clarksville city officials to change the policy and integrate its first-ever municipal event.

Like many of her celebrated peers of the era, Rudolph also benefitted greatly from that year’s first-ever Olympic Games television broadcast. Boxing dominated much of the 1960 summer games, most notably Muhammad Ali’s gold medal knockout victory over Poland’s Zbigniew Pietrzykowski. But even track and field stars such as Rudolph had their games broadcast back home, albeit with a delay. At the time, there was no satellite connectivity between Italy and the United States. CBS producers flew the footage back to the States for a delayed telecast.

Wilma Rudolph's grave remembers her as a champion.

Wilma Rudolph’s grave remembers her as a champion.

Even though she won the 1961 Sullivan Award for top amateur athlete in the U.S., male or female, Rudolph’s competitive career was ultimately about as short as her sprints. In 1962, she retired her running shoes. “I couldn’t top what I did, so I’ll be remembered for when I was at my best,” she explained, according to her obituary in the New York Times. There was also no money or professional path for a runner, and so she took a different route. She completed a degree in teaching and went on to do just that, as well as coach track and field at Indiana’s DePauw University and act as a U.S. goodwill ambassador to French West Africa. She also created a foundation in her own name, which supported community-based amateur athletics. “If I have anything to leave, the foundation is my legacy,” she said.

Additional accolades helped further cement her place in history. In 1973, she was inducted into the Black Athletes Hall of Fame. She was also voted into the National Track and Field Hall of Fame, the Helms Hall of Fame, and the Women’s Sports Foundation Hall of Fame. In 1983, Rudolph was inducted into the U.S. Olympic Hall of Fame.

Her career may have been short-lived, but her inspiration to younger generations had legs of its own. It took until 1988 for another runner, Florence Griffith Joyner, to catch up as the next woman to win three gold medals in one Olympic Games. “It was a great thrill for me to see,” Rudolph told ESPN. “I thought I’d never get to see that. Florence Griffith Joyner—every time she ran, I ran.

Rudolph lost her battle with brain cancer in 1994. In 2004, the U.S. Postal Service honored Rudolph’s racing record by depicting her likeness on a 23-cent stamp. Though not as widely known as some sporting greats to come of age in later, more media-centric decades, Rudolph’s name still carries significant weight. One of the most prestigious awards in the industry, the Wilma Rudolph Courage Award from Women’s Sports Foundation, reminds younger generations of the woman who paved the way and continues to inspire young women athletes to reach for the gold.

The Good Fight

The Young Invisibles Of Cancer

"In most people's minds, cancer isn't a college student," says Matthew Zachary of Stupid Cancer. "It's a bald kid, or a 65-year-old woman..."

Ask any random twenty-something if they want to have kids someday, and you’ll get a host of answers. “Maybe.” “Definitely not.” “If I meet the right partner.” “Yes, absolutely!” “I don’t know.” Which is, if you think about it, the great thing about being in your twenties. You can answer whatever you want to the question, because you still have time. You can always change your mind.

Unless you get cancer. Then the decision might just be taken away from you.

The lack of awareness about fertility and cancer treatments is something that gets under the skin of Matthew Zachary, founder of Stupid Cancer, the country’s largest nonprofit dedicated to providing support, awareness, and advocacy for young adults with cancer. The father of two twin six-year olds whom, but for chance, he might never have been able to have, fertility is a particularly important subject.

“Fertility should be the cornerstone of young adult cancer,” Zachary tells me by phone, with the thick Brooklyn accent of a born-and-raised New Yorker. “Cancer sucks enough to deal with as a young person without it taking away our ability to be moms or dads one day. But most young adults diagnosed with cancer are never told their treatments can make them sterile.”

Outside of running Stupid Cancer, Matthew Zachary is a trained concert pianist who has released two albums.

Outside of running Stupid Cancer, Matthew Zachary is a trained concert pianist who has released two albums.

Zachary knows what he’s talking about. In 1995, while studying film at the University of Southern California, Zachary’s grad school career was derailed by brain cancer, when he was just 21. And that wasn’t the only thing cancer derailed. A classically-trained concert pianist, one of Zachary’s earliest symptoms was the loss of mobility in his left hand, rendering him incapable of doing one of the things he loved most at a time when he was already sick. “It took a while for the doctors to find anything,” Zachary admits ,“but I can’t fault them. How many kids who are pianists exhibit early brain tumor symptoms?”

Eventually, Zachary was diagnosed, and began a regimen of surgeries and radiation, which eventually saw him go into remission and allowed him to play piano again. But during this period, Zachary learned first hand that young adults are one of the most invisible subgroups of cancer patients. “In most people’s minds, cancer isn’t a college student, or a teenager, or a thirty-something,” Zachary points out. “It’s a bald kid, or a 65-year-old woman running a relay for breast cancer.” The issue is that young adults in the prime of their life are somehow viewed as immortal, or at the very least, tougher and more capable of standing up to the hardships of cancer than other groups.

In most people’s minds, cancer isn’t a college student, or a teenager, or a thirty-something…

But Zachary cautions this isn’t necessarily so. First of all, there’s the logistics of dealing with cancer as a young adult. “Statistically, most young adults are underinsured, which can be in many ways worse than being uninsured when you’re dealing with cancer,” Zachary says. “If you’re underinsured, you’re stuck with your employer’s provider when you have cancer, and they can more easily deny you coverage. There are people who quit their jobs when they get cancer, just so they can go on Medicaid.” No wonder, then, that about two-thirds of all bankruptcies are medical, and about two-thirds of those are for people under 44.

Past the merely logistical issues with getting cancer at a young age, though, come the psychological. Because let’s face it. As young adults, the best of us are, as Zachary succinctly puts it, “hot messes” trying to figure out who we are, and how to make our way in the world. Now add the psychic baggage of cancer to the mix. “Take all the stuff that’s really hard to do in your twenties and then multiply it by thousands,” Zachary says. “Take dating. You’re dying, you’re bald, you’re sick all the time, and in my case, I was impotent. Who wants to date the cancer guy?”

Zachary’s been married for 13 years, so someone obviously did want to date the cancer guy. But the fears, the loneliness, and the invisibility he felt as a young man with brain cancer dealing with these issues are the ones which eventually led Zachary to found Stupid Cancer, in order to be able to provide resources and solidarity to more people going through what he did. What started as a grassroots club for young people with cancer has now, twenty years later, evolved into an international community. “You don’t have to be a young adult to support Stupid Cancer. You can be a boomer, a teenager, a middle-aged American, whatever. It’s a community for everyone, just viewed through this lens, which is eventually relatable to everyone, about what it’s like to be in your twenties and thirties.”

Matthew Zachary speaking at Cancer Con.

Matthew Zachary speaking at Cancer Con.

Ultimately, though, it all comes back to fertility. As his kids, home from school, rough-housed in the background, Zachary repeatedly told me on the phone that if there’s anything the cancer community needs to do better, it’s make sure that young cancer patients have a reproductive future.

“Most people diagnosed with cancer in their fertile years are simply not told their treatments can make them sterile, or impede their ability to become a mom or dad one day,” Zachary says bluntly. “There are women who have stage 4 cancer whose doctors never tell them about fertility preservation, who end up living, and never being able to have kids, because their doctors made that decision for them.”

That’s why Stupid Cancer advocates for legislation where caregivers will be legally responsible to ensure fertility preservation–including banking sperm, freezing eggs, and harvesting embryos–for cancer patients. After all, fertility preservation is the only reason Zachary has his two beautiful daughters today… but it also put an enormous financial hardship on his family.

Most people diagnosed with cancer in their fertile years are simply not told their treatments can make them sterile…

“I was lucky enough to have a doctor who did make me aware of what could happen to my fertility, and bank my sperm,” he says. “But it cost me $5,000 up front and $2,500 a year until my wife and I decided to have kids. Then it cost us significantly more for in vitro fertilization. So here me and my wife are, staring down a home equity loan to be a Mom and Dad. I love my kids–they’re healthy and beautiful and we got lucky–but is it okay that we had to effectively buy our children because cancer took them away from me? That insurance doesn’t cover this is a burden on the economy.”

Among other things, Stupid Cancer exists to help try to ameliorate some of that hardship for other would-be moms or dads with cancer. To give them the right to change their mind about if they want to have kids down the road. And, of course, to make sure that they have the resources they need to survive. Because if you get cancer in your twenties? “It’s really going to suck,” Zachary says. “But we can help it suck less.”

You can find out more information about Stupid Cancer here.