Posts

Profiles

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.”

Essays

How Charlie Brown Helped Save My Best Friend’s Life

A 1990 Peanuts special helped me get my friend to the doctor when she came down with a rare bone marrow disorder.

In 1993, I was sitting on the indestructible grey carpet of my second grade classroom, while our teacher stood on her tiptoes to load a VHS tape into the TV. There were 45 of us there–girls in scratchy green and grey plaid jumpers, boys in playground rumpled khakis and white shirts–and we had been assembled to watch a movie. It was called Why Charlie Brown, Why? and it would teach me the most important thing I ever learned in that classroom.

As Vince Guaraldi’s iconic Peanuts theme began, everyone got comfortable on the floor, grabbing pillows and making sure they could see the screen. I saw my classmate Nick walk out of the classroom with one of the teachers. She had her hand on his back, six or so inches below his bald head, which was covered in temporary tattoos.

Nick had cancer, and it meant that his life diverged from ours like a stream that branches off of a river, maybe to rejoin it done the line. He would sometimes be absent for days on end, or go to the nurse’s office in the middle of the afternoon while the rest of us were in class. I didn’t know where he went, or what he was going through. That’s probably why the teachers had put the movie on.

Nick had cancer, and it meant that his life diverged from ours like a stream that branches off of a river, maybe to rejoin it done the line.

I turned my eyes to the TV, where Charlie Brown and his friends were waiting for the bus. I watched Peanuts at home, so I was familiar with the entire gang. When Linus appeared on screen, he was next to a cute blond girl named Janice. He’d been pushing her on the swings, and the two were clearly crushing hard. As they boarded the bus together, Janice hit her elbow on the railing.

“Ouch! Now I have another bruise,” she glumly moaned. She then starts cataloguing her bruises for Linus, showing dark purple patches all up and down her arms and legs, including some that hadn’t healed even from the week before.

“You sure bruise easily,” Linus says. “I never used to,” Janice responds.

A few scenes later, Janice says she’s feeling tired and goes to the nurse’s office. Three days later, Charlie Brown and Linus go looking for her, find out she has cancer, and visit her in the hospital. Over the course of the next twenty minutes or so, the Peanuts gang learn all about cancer, and its warning signs. Then the movie ended, and I mostly forgot about it for the next 13 years.


Why, Charlie Brown, Why by WarriorMovies

In 2006, I was living in Florence, Italy, doing an extended study abroad program at an American university. It was a crisp November day after a week-long fall break, and I was outside. Across the courtyard, I spotted Anne, one of my best friends since middle school. She taught me how to play ping pong, and I taught her about the culinary joys of putting ketchup on eggs. We wandered the mall together, sharing small bags of chocolate-covered gummy bears, and window shopping fake silver jewelry. One day, when we both happened to be home with a cold, we spent the entire day on the phone, watching trashy TV and talking. I had to call her back multiple times when the cordless phone battery died. We drifted apart in high school, but we’d somehow ended up at the same abroad program, where we became close again.

Anne spotted me, waved, and walked over. She just got back from a trip to Istanbul, she said. She started to tell me about her trip, but I can barely concentrate on her story. We both had white skin, and our summer tans are all but gone in the fall light, but she looks ashen. While she spoke, I found myself focusing on her lips. Normally pale pink, they were now almost white.

The conversation shifted, and Anne mentions that she’s feeling really tired. She’s been getting bruises lately, bruises she can’t remember getting, bruises that take too long to heal. I flashback to the Peanuts cartoon: Janice on the swing, Janice with bruises, Janice in the hospital. Anne with cancer.

 I flashback to the Peanuts cartoon: Janice on the swing, Janice with bruises, Janice in the hospital. Anne with cancer.

Anne might well have gone to the doctor without me. The fact that she’d brought up her fatigue and bruises at all meant she must have known, on a subconscious level, she was sick. But I was the one who pushed her, then and there, to call a doctor. Once I made the connection between her and Janice, I couldn’t unsee the pallor of Anne’s lips, or unknow that excessive bruising can be a symptom of deadly bone marrow diseases. “You have to get a blood test, now,” I told her.

A few hours later, I saw Anne again. She had taken my advice, and gone to a doctor, who had drawn blood to test. She heard back almost immediately: her white blood cell count was almost nothing. She had to go back and meet with the doctor immediately. The next day, she was admitted to the hospital, and Anne would spend the next few months battling to save her life from a rare bone marrow disease called Severe Aplastic Anemia.

Anne wasn’t allowed out, so I tried to bring the outside to her with stories about my crazy cat, Eva Cattiva, and my ridiculous love life. I did anything to make her laugh. Then, when visiting time was done, I’d leave, getting back on the bus to wind through the darkening streets back to my apartment. I was too revved up to eat, so I spent the week baking cookies — batches and batches of them — for everyone I knew. I gave them to my roommates, the men working in the small restaurant below my apartment, the butcher next door, all the administrators at school, and anyone else I could pawn them off on. One of the teachers eyed me closely  as I handed her another plate of chocolate chip cookies. “Are you okay?” her look asked.

Recently, I rewatched Why, Charlie Brown, Why? I was struck by how many details they left out, or softened. The bedroom-like hospital room that Janice stays in was a far cry from the shared room that Anne was brought to. Unlike Charlie Brown and Linus, who wore their school clothes to meet Janice in hospital, I had to wear a full-body, pale blue medical suit before visiting Anne. Also different from the cartoon: the infinite pokes and prods, blood tests, IVs, needles. The PICC line, its gruesome name matching its equally gruesome function. And I only saw it from the outside. There were a thousand jabs I never saw, and that’s Anne’s story.

That little movie is why, years later, I still have a best friend. Thanks, Charlie Brown.

But the biggest thing that was absent from the movie: the fact that not everyone survives. Thanks to a bone marrow donor in Germany, Anne received a transplant in March of 2007, and is now a healthy 31-year-old. But in 2005, the year before Anne got sick, Nick passed away after his cancer–which had been beaten into remission when we were kids–returned.

How important was Charlie Brown to saving Anne’s life in the long run? It’s impossible to say. What I do know is that when I remembered seeing that movie in my second grade class, Anne was closer to death than any of us knew. One accidental cut, from a cutting knife or even my cat’s claws, could have bled her dry. When things are that close, every coincidence, every small decision, every awareness matters. Whether a big reason or small, that little movie is why, years later, I still have a best friend.

Thanks, Charlie Brown.

Profiles

The 15 Year Long Headache

Joshua May has woken up with a headache every single day for the last 15 years, but he's still not going to let life pass him by.

Having had Hodgkin’s lymphoma when he was sixteen, Joshua May has intimate knowledge of the inside of hospital wards, and of how incredibly short life can be. He says beating the illness during his teen years taught him to appreciate what he has, and he tries to live every day with this attitude.

But there’s something worse, to Joshua, than having cancer. It’s what he has now. New Daily Persistent Headache Disorder, a condition which is exactly what it sounds like: a headache that never goes away. One of the ways in which NDPHD gets diagnosed is the patient can pinpoint the exact date their headache began. Joshua’s headache started on March 14, 2003. He has now had it for 5286 consecutive days.

Joshua May has had a headache every day for the last 15 years.

He compares the chronic pain of his headache to cancer–and thinks the cancer was easier in many ways. For one, it’s easier for others to understand. They know it’s Bad™.  Doctors also know what causes cancer, so there’s a treatment path. Not so with NDPHD, which is defined mostly by symptoms, not causes. 

“With cancer, there’s an obvious treatment path. People empathize with you when you’re bald and vomiting. You’re allowed to take time off work, or just, like, life. Cancer is visible on scans, so doctors take you seriously. And there’s advocacy groups and support groups and, hell, entire teams of researchers trying to work out how to fix people with your problem in even better ways.”

“But if you try telling people you have a headache,” Joshua points out. “Well, you’re never going to get the same reaction.”

Joshua is a software engineer in Berlin, Germany, working on products like the menstrual tracking app Clue, and Taxfix, a tax refund site. The job is flexible around his health, and he manages his pain with a mixture of medication and biking outdoors. But having an invisible illness presents a range of challenges, access to medication being one of them. He’s lived and worked in five countries across three continents, but every time he moves, he has to start over with new doctors and new healthcare systems.

“Even within the same system, there are so many different factors. A young doctor versus the older doctor  at the same practice can have vastly different attitudes to what they’re willing to ‘believe’ and how far their compassion can bend. My only real success is trying, trying, trying until I find someone that will listen. That’s probably something 99% of people with chronic issues can relate to. Unfortunately it’s only getting harder as ‘the painkiller epidemic’ [focused on opiate use] spreads everywhere.”

Neither cancer nor NDPHD have stopped Joshua from traveling the world and living abroad.

Along with the difficulty of being believed by doctors and accessing appropriate medical help, Joshua says chronic pain interferes with interpersonal relationships. “I find it hard to say ‘I’m having a bad day… again’,” he says. “Everyone has a suggestion on how to “fix” your problem. My pain is unpredictable and unique and it’s probably going to get worse, which is really isolating.”

Romance is also difficult. The four little words “I’ve got a headache” have become such a well-known excuse for not wanting to be intimate that our society has literally turned them into a punchline. But losing his interest in sex has killed at least one relationship for Joshua. “It became breaking point, unfortunately. I did a pile of tests to see if anything else was affecting my libido. Nope, testosterone fine, everything checked out. It’s literally all in my head.”

It’s always hard to get out of bed with a headache, but Joshua says waking up every day with one is enough to drive anyone mad. “It’s one thing to wake up with a headache, but knowing the second you sit up, you’ll get a rush of blood and it’ll cause your head to throb. And that’s just the start of the day. If I could just have an hour of respite to get the day going, I feel like so much would be easier.”

Headaches can’t get in the way of savoring life to the fullest.

It sounds like hell. But having had cancer taught Joshua a lot about not giving up, and understanding when you’re making progress with an illness. Not all of your milestones are epic, but they add up: you need to celebrate them all the same. 

“I remember the day I realized [the chemotherapy] was working. I had my first treatment on a Friday, where I couldn’t eat a bit of cheese without choking. By the Tuesday after, I was able to eat a proper meal without any real issue. You couldn’t wipe the smile from my face that day!”

But neither chronic headaches not cancer are going to get in the way of Joshua living his life to the fullest.

“I think my adult life is heavily tinted with a general idea that you can’t put off happiness until retirement. I wouldn’t be surprised if I don’t make it retirement, due to the chemotherapy, so I have to live my life while I’m here. It’s a good reminder to make everything worthwhile. Don’t waste your life causing problems. Just try to do good things.”

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.

The Good Fight

Because Chemo Is Scary Enough Without Wigging Out

After her own cancer treatment, Nancy Riviere started Wig Out, a non-profit dedicated to getting free wigs to women who want one.

In 2014, Nancy Riviere is a brunette, but she’s decided one of her wigs should be blonde. It just seems more fun, and god knows she needs some fun right now. In the wig shop, she sits quietly in front of the mirror watching as the sales clerk pulls the curly, shoulder-length hair piece over her head. Riviere still has her hair, but knows that in just weeks, she’ll be bald.

Riviere, then 41, had just been diagnosed for a second time with invasive ductal carcinoma,the most common type of breast cancer. The diagnosis came just nine months after her last reconstructive surgery, itself following a double mastectomy, and two-and-a half-years after she first found a lump in her left breast.

Nancy Riviere, founder of Wig Out

But this time, she needed chemo, and it was this painful, intimate experience of shopping for a wig that led her to create Wig Out, a non-profit that donates repurposed, high-quality wigs, headscarves and hats to women across the country who’ve lost their hair during chemotherapy.

Cancer came into Riviere’s life in May 2012. On vacation over Memorial Day weekend, Riviere, who was 39 at the time, found a small, round, painful mass under her breast while doing a breast self-exam. “At the time, I didn’t go to that place in my brain, that it could be cancer,” says Riviere, a former event planner.

After a series of painful breast biopsies, Riviere learned it was, “I was lying there and crying, and the nurse was holding my hand and telling me ‘it’s going to be okay, it’s going to be okay.’ It just completely rocks you emotionally.”

So when Riviere was diagnosed the second time and told she’d have to have chemo, she wanted to feel prepared.

Riviere knew the drugs would whittle away at her hair. It would start to come out in clumps in the shower; in the mornings, she’d find her pillowcase plastered with wisps that had fallen out overnight. She wanted to be ready for the inevitable, so took a trip to a local wig shop in her hometown of Houston, Texas.

Today, remembering that first experience while she washes donated wigs in the sink of a guest bathroom in her bright and airy mid-century modern home, Riviere remembers her surprise at how little the women there had thought of the experience of women like her.

“It’s a shocking thing to try on wigs knowing you’re going to be bald.”

“The women there could not have been nicer, but the experience was scary, sad and somber,” she says, as long brown locks, blonde bobs and salt and pepper ‘dos drip dry from hangers hooked over the shower rod. “It’s a shocking thing to try on wigs knowing you’re going to be bald,” she says. “No one at the store had been through the experience herself. No one had walked the walk.”

Nancy and hair dresser when she got her head shaved for the first time.

It was then that a fuzzy idea popped into Riviere’s head. What if she could somehow help women in the same situation as herself feel different—comforted, reassured, and perhaps a little more confident and uplifted, despite the horrible circumstance they were in?

Several weeks later, Riviere sat in a barber’s chair at MD Anderson Cancer Center. She wore her signature cherry red lipstick, a mainstay throughout her treatment. It made her feel alive and put together. Her hair was patchy now, and she knew it was time to shave her head. When the volunteer hairdresser offered her a free wig, Riviere had already bought one, so instead, she asked if she could give it to her friend’s housekeeper, who had also recently been diagnosed with breast cancer.

“It changed her world,” Riviere says. “She couldn’t afford to buy a wig. It gave her the tools to face life and get back to work with pride and self-confidence. It restored her. I knew then there was really something to my idea. Something needed to be done.”

“It changed her world. She couldn’t afford to buy a wig. It restored her.”

For so many women, wigs are cost prohibitive. It’s not uncommon to shell out hundreds to thousands of dollars for a high-quality wig made of human hair, and they’re not covered by insurance. With lost days of work and stacks of healthcare bills eating away at income, many women have to make tough choices, between clothes and school supplies for their children or a wig for themselves. A wig won’t be the right choice for every woman, but studies show that hair loss, which can last for up to a year after treatment, is one of the most traumatic parts of cancer. If a wig can be the difference between a woman with cancer having the courage to face another day of treatment, and feeling alone and vulnerable, Riviere felt it should not be denied her.

Weeks after Riviere parted with her first wig, she gave her blonde number (which she never felt quite right in) to a woman she met during radiation. “It was just tears and tears, the two of us standing in front of the elevator at the clinic,” she says. The ability to help someone when they’re really on their knees, fighting for their life—that’s what helped lift Riviere up.

Nancy helps a client style her wig.

Wigs gave Riviere a respite from the constant reminder she had cancer, while Wig Out gave her a reason to keep going when she wasn’t sure she would survive. The next six months of chemotherapy–which included 33 days of radiation treatment, and several surgeries that removed her ovaries and fallopian tubes–were extremely trying, but she was motivated by her desire to ultimately help as many fellow women as possible.

Since Wig Out launched in the summer of 2016, Riviere has paired dozens of women with wigs: the non-profit currently  has 150 hair pieces, draped over Styrofoam heads and spilling out of bureau drawers, ready to donate. Riviere receives donated wigs from across the United States, washes them, pairs them with women based on a questionnaire and follow-up phone call, and mails them to the women along with a wig care kit, all for no charge.

Right now, Riviere is still working alone, but she hopes to soon expand the program. Next up for Wig Out? A dedicated office, as well as a fully-stocked van she can use to take her mission mobile, driving it to patients’ treatment facilities where women can receive a wig on the spot. “This can be easily replicated in cities across the world,” Riviere says. “I see it going there, I know it will.”

“Service to others really gets you out of your own head,” she adds. “ It’s so healing. And it takes just a little bit to help someone get back on their feet, to reclaim themselves.”

Essays

Why I Started “The Huffington Post For Testicles”

For the last two years, K. Thor Jensen has written hundreds of clickbait articles about testicles, every one for a good cause.

They say the mark of a good writer is the ability to spin gold out of straw: to take any topic, no matter how obscure or ridiculous, and turn it into compelling prose that people want to read.

I’m starting to feel like a pretty good writer, because I’ve penned hundreds of words about testicles every day for the past two years.

Sean Kimerling, a New York sportscaster who died of testicular cancer in 2003.

In 2014, the Sean Kimerling Testicular Cancer Foundation had an idea. They’d been successful doing the usual nonprofit stuff–a yearly fun run on Roosevelt Island, a charity golf game–but they wanted a new way to raise awareness for testicular cancer.

The foundation is named after a sportscaster who died at the age of 37 from the disease. I never knew Sean Kimerling, but his hustle was inspiring. After an internship in California, he dubbed 100 videotapes of his on-air work, packed them in a car and visited every station between Los Angeles and New York to ask for a gig.

He got one, in Texas, and eventually parlayed it into a weekend job manning the sports desk at New York’s PIX11, where he won two Emmy Awards. Unfortunately, in 2003 he went to the doctor complaining of back pain and was diagnosed with testicular cancer. It had already spread to his lungs, and he succumbed to infections shortly after.

Testicular cancer is the most common form of cancer in men under 25. But it’s also one of the most beatable.

Testicular cancer is the most common form of cancer in men under 25. But it’s also one of the most beatable. If detected early, before it spreads from the testicle to another body part, survival rate is a staggering 99%. That goes down if it metastasizes. Since there’s no real way to prevent cancer, most outreach involves catching it before it moves out from the testicles.

You don’t need to go to the doctor to do a preliminary screening for testicular cancer. What you do is reach down, put your index and middle fingers at the base of your testicles, and gently roll them, looking for any lumps or irregularities. It takes about a minute.

So the foundation’s goal was simple: get people checking themselves at least once a month.

The problem with their other initiatives is that they were yearly affairs. So they made a big impact, got some press, and then faded into memory. They wanted something that got testicular awareness in front of people day in and day out, to remind them to do that one minute check.

The winning idea was the Ball Report, a site that they pitched to me as “the Huffington Post, but for balls.”

With a topline like that, I couldn’t say no.

The winning idea was a site they pitched to me as “the Huffington Post, but for balls.” With a topline like that, I couldn’t say no.

I signed on with the foundation in early 2015. Together, we developed a business plan for the site. We quickly realized that a 100% testicle-focused site would run out of material pretty quickly, so we started brainstorming what would be under the umbrella. Testicular stories, sure, but also stories of “ballsy” behavior. Sports, as long as the ball was the focus of the piece. Ball pits. Energy balls. Balls of snakes. You get the idea.

We knew when we launched the site that “come read about testicular cancer every day” wasn’t going to generate a lot of traffic. So we had to balance the mission-centric content with other ball-related clickbait.

It worked.

The homepage of the Ball Report mixes cancer awareness content with clickbait-style articles.

As I write this, I’ve created 1,073 posts for the Ball Report. We’ve had some tremendous content successes, stories that have been read hundreds of thousands of times.

When a viral story about a gang member dying after spray-painting his testicles gold started to spread, I was one of the first to debunk it and trace “his” mugshot back to another story.

I wrote a dense history of the practice of “teabagging” in video games, that ubiquitous first-person shooter taunt where you rapidly crouch over a fallen opponent’s head.

I interviewed an entrepreneur who was Kickstarting a bulletproof jockstrap inspired by a particularly brutal groin shot during a UFC fight.

The powerful thing about working on the Ball Report is that we have proof that awareness can translate into action, and that can translate into saving lives.

And it’s not all testicles, either. When I work on the site, I look outside the bag to find clickable, fun stuff that I can still tie back to the mission. After I saw an old comic book ad for Madballs, the grotesque 80s bouncing toys modeled to look like movie monsters, I put together a history of their production and marketing. I also shared my picks for the best pinball machines ever made, and profiled a Florida man who claims to have made $15 million retrieving golf balls.

Lots of medical nonprofits tout “awareness” as something that they provide. But for many diseases, “awareness” is a pretty useless metric. The powerful thing about working on the Ball Report is that we have proof that awareness can translate into action, and that can translate into saving lives. Every single post comes with a bold and unmissable sidebar advertisement, a picture of a denim-clad cowboy gripping his crotch and exhorting you to check yours. And we can track exactly how many people come to our non-profit because of our ball-related clickbait.

The thing with testicles is that they’re not easy to talk about. What’s interesting about talking to testicular cancer survivors is how open they are about their illness, even though it involves one of their body’s most private parts.

I’m not the only one out there transforming testicular cancer into creative inspiration. I’ve been lucky to profile multiple people who survived the disease and came forward about it.

Canadian artist Mathieu Francoeur struggled with his treatment, having to stay out of direct sunlight because chemotherapy weakened his immune system so badly. Confined to his garage, he produced a series of paintings that used materials from his hospital stays on the canvas. A show of the work raised money to pay for his hospital stays.

Surviving testicular cancer is a crucible–it burns away the embarrassment of talking about your testicles to the world.

I was inspired by the story of Josif Nolan, a British guy who was diagnosed at the age of 14 and had one of his testicles removed. He was seriously embarrassed and traumatized about his body for years afterwards, but bit the bullet when he was scouted by a modeling agency. Now he poses–even in the nude–for multiple global brands.

Even Taboo from the Black Eyed Peas, one of the most prominent testicular cancer cases of the last few years, wrote a song called “Fight” about his journey.

Surviving testicular cancer is a crucible–it burns away the embarrassment of talking about your testicles to the world. The people I’ve written about have come out the other side galvanized to share what they learned and help prevent other people from going through it.

I’ve been writing professionally for two decades now, for dozens of different clients. I bring my best to every job, no matter what the subject. But this is more than a job to me. It’s allowed me, without suffering from testicular cancer myself, to join a fraternity of men who are using their ordeal to help other people. Each and every one of us is looking to save somebody’s life–no matter how uncomfortable it makes people–one ball at a time.

Illustration by Shannon Wheeler.

Q&As

Fighting Cancer Among The Q’eqchi’

After years spent fighting for the rights of native Guatemalans, Liza Grandia is applying an anthropologist's skillset to her own cancer.

Guatemala’s second largest indigenous group, the Q’eqchi’, are a justifiably proud people. Their traditional lands constitute the only Mayan territory never conquered by the Spanish. Q’eqchi’, also the name of their language, is the most widely spoken Mayan tongue in Guatemala.

Liza Grandia today.

Liza Grandia, an American anthropologist, first fell in love with Q’eqchi’ culture in 1993 during her undergraduate studies at Yale. Going on to live with a a Q’eqchi’ family in Guatemala for four years, she returned to write her dissertation, staying for another three years.

Living with the Q’eqchi’ is not an easy lifestyle. “Petén, Guatemala is a pretty rough place to work — heat, mosquitoes, parasites galore, dust, poor roads, bad water, and little to no sanitation,” says Grandia. But she took it in stride, because she believed her work, focusing on environmental justice and agricultural conflict, was important. While there, she even helped assist the Q’eqchi’  defend themselves from land grabs triggered by a World Bank loan.

I was horrified that no one was working on these issues.

Nine years ago, after returning to the United States after seven years of living in rural Guatemala, she was diagnosed with an aggressive form of lymphoma. Grandia believes that the cancer likely grew out of her long term exposure to pesticides and other toxic contaminants found around the villages she lived in–several large resource extraction projects operated nearby.

Though there is no official registry of such data, Grandia believes that chemical exposure among the Q’eqchi’ is likely high. Grandia herself kept a detailed record of the pesticides she was exposed to. “I was interested because I was horrified that no one was working on these issues,” she says.

The diagnosis, which effectively ended Grandia’s career as a field researcher, set her on an intellectual journey investigating this issue: how chemical exposure might be quietly poisoning us. She was surprised to find that environmental factors were generally not considered in cancer diagnoses. When she informed multiple oncologists about her likely contaminations in Guatemala they were simply “not interested in the information,” she says. Her concerns have carried on into her new academic research.

“I’m interested in making that loop, the complete circle of poison back to our lives, the ways in which we inadvertently poison ourselves.”

Earlier last month Grandia was awarded a Mellon Foundation grant for $270,000 to study toxicology and environmental epidemiology at the University of California, Davis, where she is director of the Indigenous Research Center of the Americas. “I’m interested in making that loop, the complete circle of poison back to our lives, the ways in which we inadvertently poison ourselves,” she says. She also continues to work remotely with the Q’eqchi’ on a number of environmental legal cases as an expert witness.

Folks spoke with Grandia to find out more.

Much of your current work was influenced by your own medical situation. Can you please take us back to your diagnosis?

I was diagnosed with a very aggressive lymphoma the day before my 35th birthday. I had a lump spreading on the top of my chest through my collar bone that grew from zero to ten centimeters in about a month. It was actually my first year as a professor. I was in my first tenure track job and right at the beginning of the second semester. Because the cancer was so aggressive either the chemotherapy would work or I had about two months, according to the oncologist. I haven’t really led an academic life outside of that reality.

That occurred in 2008. There hadn’t been a six month period between 1993 and 2008 that I hadn’t spent time in Guatemala. Sometimes it would be two or three years on end. So that was an abrupt shift for me to not be able to go to Guatemala for the better part of five years.

What first drew you to anthropology and why does it drive you? Why did you start focusing on the Q’eqchi’?  

I was drawn to anthropology by the practicing anthropologists I met when I first went to Guatemala in 1993.  I liked the kinds of questions they asked.  They always seemed to have a quirky angle on whatever the proverbial elephant was in any given meeting room. That said, I did what no student should ever do: apply to graduate school in a field in which you’ve only taken one introductory class. Luckily for me, anthropology is my life’s calling and I landed at UC-Berkeley with the best possible mentor in the field, Dr. Laura Nader.

I was drawn to anthropology as a discipline for understanding problems of corporate globalization because I felt more than any other social science it had genuinely and honestly wrestled with its colonial past.

I was drawn to anthropology… because I felt more than any other social science it had genuinely and honestly wrestled with its colonial past.

In the four years I spent in Guatemala before graduate school, I had lived with a Q’eqchi’ family, worked in Q’eqchi’ communities, but had not yet learned the language.  For my dissertation work, I committed to this and was rewarded with so many new understandings of Q’eqchi’ lifeways and worldview. This is a continually deepening process. Decades later, Q’eqchi’ healing and ceremony is helping me understand what I am meant to do as anthropologist.

In Maya cosmovision, a good life is one in which a person finds and fills her destiny. When you get a life-threatening illness like cancer, a person tends to question everything. What’s the point of all that suffering?  What am I going to make of that experience?  It’s taken me almost a decade to understand my path forward.

Has studying the way other cultures approach illness helped you in any way handle your own?

Absolutely. I never even considered putting all my eggs in the allopathic basket.  Chinese medicine (acupuncture and qigong) were central to my recovery.  The Mesoamerican tradition of sauna has been the cornerstone of my healing of chemical sensitivities. That said, it’s also a healing modality of Europe. You find many similar healing modalities that arise in disparate places at different times. Some old Maya healers practice a kind of acupuncture with sharpened bones, and they use very similar points to Chinese doctors. So I read copiously across many medical traditions and look for commonalities or comparable success stories.

What was your initial healing process like?

I had just moved to a new town, Worcester, MA. I didn’t really have a network of support, didn’t know where to go for treatment. From the very beginning I felt that the best way to cure myself was to be very public about my cancer. Some people take it very privately, like a scourge on themselves. But I never blamed myself. I sent out an email to 300 people asking ‘What do I do?’ Through that I pieced together connections to very good doctors.

I had long been an activist and worked with social movements. I’m very good at organizing on behalf of others but I’d never actually organized for myself. I took this as ‘How do I connect the people I know and use my intellectual firepower to heal myself?’ I wasn’t going to put all my eggs in one basket. I did chemo and radiation because it was a very acute cancer, but I also tapped into a lot of alternative therapies.

From the very beginning I felt that the best way to cure myself was to be very public about my cancer.

My original surgeon in Worcester wanted to try to cut out the tumor. I found out later that surgery would have killed me because it would have delayed the chemo and caused the cancer to spread. The night before the surgery a friend convinced me not to go. I called the hospital and cancelled. The doctor actually threatened me and said if I didn’t go through with the surgery I’d never be allowed back in that hospital again. I didn’t have health insurance to any other hospital so it was a leap of faith at that point. I had not seen any other specialists. Happily I found another oncologist. For six months I underwent chemo and radiation. I have been in remission ever since.
What kind of alternative medicines did you tackle during your recovery? Did you feel more open minded about such treatments because of your training as an anthropologist?

Grandia during chemotherapy.

I mentioned saunas above. Healing is multi-layered and what works for one person at one time may not work for another. To be honest, I wasted a lot of money on supplements, though a few have been helpful. The most healing things have been the least expensive, and good, organic whole food is medicine in itself. Qigong was the cornerstone of my recovery from cancer and gave me an understanding of how to induce a relaxation response or shift the autonomic nervous system from sympathetic to parasympathetic state. When I fell ill with chemical sensitivity, for awhile, I focused heavily on detoxing and replenishing minerals. Then I worked on my lymphatic system and found old-fashioned castor oil packs and dry brushing to be transformative. I worked with western doctors to address glutathione deficiencies — glutathione is a master antioxidant and chemical exposures can deplete your store of them. I’ve always had a healthy diet, but I started learning about the brain-gut connection and probiotic foods and drinks made a difference in my cognitive function. Then I started learning about the limbic system and how to condition the amygdala not to go into flight-or-fight response so much. That is very much a work in process.

What has been your life been like in remission and how did your diagnosis change your academic and activist work?

Over the last nine years I haven’t gone six months without having a terrifying cancer relapse scare. It’s over but it’s never over. You never have a normal headache as a cancer survivor. One can never accuse a cancer survivor of hypochondria.

Five years ago I moved here to UC Davis. Given that I was in questionable environmental circumstances before the diagnosis it definitely caused me to reflect on the questionable long term exposure over a lifetime.

It’s over but it’s never over. You never have a normal headache as a cancer survivor.

What cancer researchers are finding is what they call a multi-hit model of cancer. The prior imagination of cancer was that there was this one thing that gave it to you, like asbestos or smoking gave you lung cancer. Increasingly it appears that many of the genetic transformations and things that happen at the cellular level which impair the body’s ability to repair itself can come from something that occurs over many, many steps. In fact the oncologist told me right away that because the cancer I had was so particularly aggressive, the mutation it had would have required a series of things to have gone wrong.

Is that when you made the link with Guatemala?

In my field work in Guatemala I was working with farming families. I was worried about the pesticides being used so I had been tracking them. I had a list of all the pesticides that were being used in the villages I’d lived in. I had done some initial research on that and presented a paper in Guatemala because the international organizations were really focused on biodiversity and didn’t really care about human health–there’s not a lot of information about the dangers of pesticides in Guatemala. So I was definitely aware of the connection with pesticides when I was diagnosed.

After diagnosis, with not being able to expose myself to pesticides, which, with rural fieldwork in Guatemala, there’s no way to avoid it–they stored pesticide tanks next to the bed in the hut I was staying in, for instance– it was clear I wasn’t going to be able to do that old fashioned anthropology anymore. I was thinking about how I could reinvent my work so I could be effective from my desk. Indigenous people are online and organizing in extraordinary ways, making use of digital tools. I had been thinking a lot of how I could be of use to indigenous groups facing environmental struggles without actually having to physically go. I knew that I had to learn the language of toxicology and policy, so I applied for this Mellon New Direction fellowship.

What was the link you saw between your diagnosis and your previous agro-environmental work in Mesoamerica?  

When you do chemotherapy, some of the drugs are so toxic that the nurses have to put on partial hazmat suits–an extra full gown, masks, thick rubber gloves–to actually handle the needles and the bags that they’re putting in your IV. You’re voluntarily poisoning yourself to hopefully get well. I had been, in the lead up to chemo, revising my book for publication in Guatemala about the World Bank inducing land grabs. The key legal principle which we were trying to use to stop the expansion of this World Bank project to the rest of the Q’eqchi’ Maya territory to the south was that the Bank had expanded the project without consulting the indigenous communities. They had violated the international legal principle of “free prior informed consent.”

After my diagnosis, I began thinking about that and then thinking of the possible causes of cancer, of the chemicals that we all have in our bloodstream without our consent. People in the United States are crazy about trespassing and privacy but don’t think about the things that corporations have put into the environment and then travel inevitably into our water and bodies, full circle.

I followed all the rules, like a lot of people who get cancer. But the institutions are looking at how to blame the individual rather than the… corporate economy.

I started tracking the companies that were responsible for the two main herbicides to which I know I had been exposed: glyphosate and 24-D. Monsanto makes glyphosate and 24-D was once manufactured by Monsanto and now Dow Chemical.

This was part of my externalizing the causes of my cancer. Folks have written a lot of literature about positive healing, but it sort of implies that you gave yourself cancer by thinking negatively. In the 1970s there was thought to be a type of person who got cancer–stressed and so forth. All of the American Cancer Society literature is about behavioral causes: you drank too much, you’re overweight. But I was a vegan, organic eating, exercising person–I followed all the rules, like a lot of people who get cancer. But the institutions are looking at how to blame the individual rather than the broader structural forces of the corporate economy. That’s when I began to think of the concept of “chemical trespass”, which led me to research about everyday chemicals in our bloodstreams.

What are your key goals going forward with furthering your activism and research?

I continue to do lots of pro bono expert witness work on behalf of Q’eqchi’ peoples. I think that scientists on campus have that capacity to do pro bono science work from their laboratories, if there is interest in it, but they don’t have a social connection. So I see myself as a connector. I hope to have a system and network and way of connecting groups that are facing emergency and environmental threats. They need to be able to connect with environmental scientists to get the soil, water and air quality studies that are needed to bring their cases before a judge. They need evidence, hard core evidence. Most native and indigenous communities don’t need anthropologists anymore to document their culture–they’re doing that themselves. But they do need connections to entities of power.

Top photo of a Guatemalan woman provided by Creative Commons license by Stefano Ravalli.

Profiles

Meet Mexico City’s Amputee Grammar Queen

After losing her leg to cancer, Paulina Chavira turned to her passion for grammar to make sense of the world.

Paulina Chavira, Mexico City’s grammar queen, is sitting in her office, having another fight on Twitter.

“People often get angry with me, saying things like ‘how can you correct me?’” she says. But Paulina feels driven. It’s just one of many interactions she’ll have online on a regular day. But not all are negative – Paulina gets comments and questions from educators, writers and the media, calling on her to advise them on issues of punctuation usage, accents, structure and more.

Being grammar queen is something of a new gig for Chavira. But she’s always had a passion for words.

Chavira checks Twitter.

In July 2013, when Paulina was 33 and had her first son began kindergarten, she read a tweet revealing that Mexico’s education ministry was going to accept public school textbooks into the country’s classrooms even though they were riddled with errors – 117 errors, to be exact. She took to Twitter to express her outrage, thinking, “How can this happen?” So she tweeted to her 400 followers.

The following day, major Mexican media outlets picked up on the issue, harshly criticizing the ministry for allowing a textbook with so many mistakes into public schools. But Paulina’s ire towards grammar mistakes isn’t just aimed one way. The day after, Paulina identified another issue, tweeting back to media sources: “Media outraged with 117 spelling errors in the textbooks of the SEP, but indifferent to those they commit daily.”

The sudden attention got Paulina thinking. In Mexico, as elsewhere, Twitter is a big way that people get their news and information. She asked herself how she could use Twitter to promote proper grammar, and came up with the idea of a Twitter database where Spanish speakers could check spelling and grammar. Armed with the @117errores handle, the result was NoMás117errores, or “No more 117 errors”, a direct reference to the 117 grammar errors found in the schoolbooks.

The grammar bug got Paulina in high school. That was also the year she was diagnosed with a cancerous tumor in her right knee. When Paulina started her chemotherapy in May 1997, she was having a hard time thinking of the future at all. Paulina thought it was bad enough that she might lose her hair, but soon, there was talk of amputating leg… talk that became a fearful reality after she woke up from her final leg surgery on September 29th, 1997 to just one foot and the indescribable experience of phantom limb pain.

“More painful than all of the surgeries was trying to stand again for the first time,” Paulina remembers. With the help of a few dedicated teachers, Paulina stayed on top of her schoolwork. Her parents, meanwhile, were an incredible support system. “You are more than just your leg,” they repeated, a constant refrain. “You are an entire human being.”

Paulina Chavira in Japan while working for Marlo and his team.

“You are more than just your leg,” they repeated, a constant refrain. “You are an entire human being.”

Over the next few years, Paulina ran the gamut of fears regarding her transition. “How will people look at me? Will I ever get married and have kids? Will I ever dance again?” Making matters worse was her prosthetic leg, a model unchanged since World War II.

When she went to college, she chose journalism as a major, and it was there that her love of writing and grammar became a passion. “Writing was a way I found to pour out all the pain and anger I had after my leg was amputated,” she remembers.

While studying at Tecnológico de Monterrey, Paulina’s antediluvian prosthetic was still causing her problems doing simple things like walking long distances and wearing her normal clothes.

Her father heard about a prosthetic engineer, Marlo Ortiz, over the radio. A man who was revolutionizing the anatomical socket, the interface where the residual limb goes into the prosthetic. The Marlo Anatomical Socket (MAS), was developed with the engineer mindset to provide more skeletal support and be aesthetically more human-like in the gluteal region. Paulina worked closely with his team, testing the new technology, and eventually getting her own advanced prosthetic.

“There was life before Marlo, and life after Marlo,” says Paulina. Not only did he supply her with an advanced prosthetic, but he taught her to use it for the first time. It renewed her confidence. “For the first time I thought, maybe I should try this, while before, I automatically thought: No, I can’t,” she remembers.

This confidence encouraged her to study abroad in Spain, there she finally felt like she really accepted her metamorphosis. “Up until that point, I had never really faced that I had lost a leg.” But abroad, it was was impossible to skirt around the issue. Her new friends asked about it, and as they asked about her missing leg, Paulina stopped being ashamed.

“For the first time I thought, maybe I should try this, while before, I automatically thought: No, I can’t.”

She returned from Spain with newfound independence, and she was asked to join Marlo and his team as a full-time Media Coordinator and Patient Model. Full of unique opportunities, she put her journalism career on hold and she traveled to the Czech Republic, South Africa, Japan and more: visiting the factories where they made the prosthetics, using her journalistic skills to do public relations and talk about her experience. While the experience was extraordinary, after more than a year she felt like she was living inside of her experience losing her leg, and felt like it was time to move forward and reconnect with journalism.

Paulina also found love, something she had previously feared when she first lost her leg.

Paulina and her husband Hector dancing at their wedding.

She married Hector, in November of 2006, and they “danced all night.” As for their two young boys, she tries to make the prosthetic leg as normal as possible. “I think the more normal we can be about it the better.” Once her son Mateo even asked, “does everyone’s mom have a prosthetic?”.

Once her son Mateo even asked, “does everyone’s mom have a prosthetic?”

Her influence on Twitter landed her an editorial position with The New York Times en Español and her career goals have grown. She now hopes to finish a Spanish style-guide for news.

Over the years, and despite the trauma experienced during her formative years, Paulina followed her love of language, starting with writing, finding the accessible opportunity of editing in journalism, and ultimately as a grammar force in her editorial position and on Twitter.

Her ultimate pet peeve on Twitter is “when people say ‘it’s not well written but you understand me.’ And I can’t understand why they don’t see the importance that it’s written correctly.” Paulina believes in the power of language and grammar. She says: “I love my language, I love to write it correctly. It’s a weapon. A peaceful weapon.”

The Good Fight

The Healing Power Of Music Medicine

When being sick in the hospital is getting kids down, this charity saves the day by kicking up the jams.

One of the most potent measures of healing doesn’t come from a person’s lab results, but from their level of happiness. Recognizing that treatment comes in many forms, there is a Portland, Oregon-based nonprofit that strives for just that: helping young hospital patients find joy in every challenging moment through the serendipity of live music.

After feeling helpless watching her daughter battle cancer, Regina Ellis wanted to create something she felt would be meaningful to her and her family. She founded the Children’s Cancer Association with which she launched a program called MyMusicRx. which brings well-known artists and top-quality, professional instruments into hospital rooms of critically-ill kids for what she calls “music medicine.” The organization believes that the power of bedside music can have a transformative effect not just on patients and their families, but on caregivers and artists as well.

Folks connected to Ellis on the phone to talk about the power of music in the face of illness, and surviving hardship with love.

Regina Ellis of the Children’s Cancer Association and MyMusixRx.org.

I’m excited to talk to you about MyMusicRx because I’ve admired what you have accomplished with this project. I would love to hear more of its backstory.

As you may know, the Children’s Cancer Association is the only organization of our kind in the nation working to position joy as a best practice in children’s hospitals.

The project started because of a very personal experience battling cancer with my eldest daughter, Alexandra. During that time, I was inspired by the way Alexandra oriented her head and heart towards life. Even though she had a very aggressive disease and spent half of her life in hospital, she really welcomed each day looking for joy in the corners of the hospital room experience, all amidst hardships such as high dose chemotherapy and other surgical procedures. She could always find what was beautiful in that moment.

After Alexandra died in 1995, we brought friends and family around our kitchen table to create an organization that helps kids reduce the stress and anxiety of pain through the power of joy. We were very thoughtful about creating something new in the world: we’re not a chapter organization or a franchise of a national model. We’re a local organization that has spread out across the nation based on need.

I understand that the MyMusicRx program serves the families who are in the hospital, as well as their children. Is your goal to speak directly to the experience of the entire family?

That is correct. We know from experience that being face-to-face with illness impacts the entire family. The whole family is gathered around the hospital room: not just the mom or dad, but the siblings as well. So our goal is that our programs help support and strengthen families, addressing the stress and anxiety not only of the child, but of the individuals around the child.

What was your experience when Alexandra was first diagnosed? How did it impact your family?

Obviously, it had a big impact. This was around 25 years ago, so I was in my late twenties, with two little children and my husband, Cliff. Luckily, we were very lucky to have a big Italian family around us, but cancer was still this unexpected guest in the middle of it. We were very fortunate to have lots of people around us, but it was also a difficult journey. We spent half of every month in the hospital, and the other half recovering and trying to live as much as possible.

Alex created a “To Live” list and wrote down over 30 things that she wanted to do. Things like “make a tie-dye t-shirt” or “bring snickerdoodles to the neighbors” or “have a fun pizza party.” We made a point of checking them all off, even though we were in the hospital.

Some of those simple things were really beautiful. The last thing on Alex’s list was: “Have a root beer float in one of those huge icy mugs.” She did that the day before she died.

So that was the mission, I think, we were given. To figure out a way to live alongside of cancer that gave us hope and allowed us to be a family. And after Alex died, to think about bringing that healing power of joy to other seriously ill kids around the country and the world. Because kids need more than medicine.

24 years ago, you need to remember there was no platform for music in hospitals. You might have some carolers during the holidays, or a special show when an artist came to the community, but otherwise there was nothing. We pioneered what that looked like.

In addition to holding bedside concerts, MyMusicRx brings instruments to patients.

Were you already thinking about MyMusicRx when you were in the hospital with Alexandra, or is this something that came later?

We saw the power of music in our own family over many years at the hospital. People brought their guitars and harmonicas and violins and voices, and we would gather around the hospital bed, playing, almost like you’re sitting around a campfire. The doctors, nurses, even other families would come in and join that. The power to transform these moments from ones about disease into ones about being human beings through the power of music was profound.

I’ve had similar experiences with my travels through healing and hospitals. I think the music idea is so powerful because it doesn’t take a lot to come into a room with an instrument and play for someone who is not feeling very well.

Twenty-some years ago, people told us: “This will never work. Are you kidding? We’re in a hospital here. Instruments aren’t going to help. There’s no way.” But little by little, we began to demonstrate that our program worked to reduce pain and stress.

Music is simple. We thought in terms of what a child or family needed. “Hey, this kid has a respiratory issue so we’re going to bring in an instrument that helps them with their breathing.” or “Hey, this kid needs to move their arm after surgery to strengthen their arm.”

MyMusicRx is the only program that extends a digital musical program that brings the bedside experience online, 24/7. It’s now available to about 7,500 kids and over 25 pediatric hospitals across the country. If kids want music at 2:00AM, we bring it to them then.

Was music a big part of your life before MyMusicRx?

I was certainly a fan. I wouldn’t call myself a musician but I’m just pretty damn good with a tambourine. *laughs* But I had the privilege of having incredible musicians provide the soundtrack to my life, so when the time came, it was easy to see the power that music could provide to deliver healing to kids in a different way.

We believe that the best things are the simplest things. Whether it is five or thirty minutes a day, we believe these small musical interactions are just critical for kids who are facing life-threatening or terminal illnesses.

That’s awesome. So how can people get involved? How can they help?

 Whether you’re a band member, a volunteer, or a patient, the best way to connect with us is to go to mymusicrx.org. If there’s something in your community, we can connect you, and if not, we’ll help you start one. Just reach out! We’ll help in any way we can to share music and joy to people in need.

Q&As

The In-Between Days Of Having Cancer

In her powerful graphic memoir, comic artist Teva Harrison shines light on "the bogeyman that is my cancer."

When Canadian artist Teva Harrison was preparing to undergo stereotactic radiation—a medical procedure that requires the patient to be vacuum-sealed into a mould that feels like a bean bag chair—she couldn’t stop laughing. “I felt wrapped up like a tray of supermarket sushi,” Harrison writes in her graphic memoir, In-Between Days, which chronicles her life after being diagnosed with incurable metastatic breast cancer at age 37. In a black-and-white comic, a smiling cartoon Harrison lies shrink-wrapped on a hospital bed and asks her technician: “Would you mind taking my picture in here so I can show my husband how weird this process is? Please?”

This sense of humor and eye for the absurd is woven throughout the devastating personal essays and minimalist pen-and-ink comics that make up In-Between Days. That doesn’t mean the book is Pollyanna-ish—Harrison confronts head-on the heartbreak, terror, and physical agony her cancer wreaks—but that these pages contain equal parts hope and dread. “I am chock full of hope, mostly because I need it to get through every single day,” Harrison writes. The “Acts of Hope” illustrated in one comic include “wearing seatbelts in cabs; buying recycled toilet paper; 7-step skincare regimen—because who does these things if they don’t believe in the future?” Perhaps the bravest act of hope Harrison performs is that of drawing and writing about her illness, which presumes the possibility of finding meaning and connection in the midst of suffering.

Teva Harrison. Photo by David P. Leonard.

“When I was first diagnosed, I didn’t want to talk to anybody,” Harrison writes in the book’s preface. “I have since learned that it is the unspoken that is most frightening. Shining a light on my experience takes some of the power away from the bogeyman that is my cancer. I am taking my power back.” This means Harrison is unflinching in her illustrations of cancer’s grisly realities—from opiate-induced emotional numbness and vomiting to the foggy memory and vaginismus that follows surgical menopause—but also that she refuses to let pain block out light. She offers snapshots of her sustaining marriage and friendships; reflections on her family history and Jewish heritage; and childhood memories of snowball fights and summers spent floating with her sisters in “the mermaid pool,” a super-sized metal horse trough with a dedicated hose.

Shining a light on my experience takes some of the power away from the bogeyman that is my cancer.

In a society that often dehumanizes and shuts out the seriously ill—as Harrison puts it, “When we get sick, we disappear”—this portrait of living in the “in-between spaces” offers the antidote of empathy. We spoke to Harrison about the making of In-Between Days, the downsides of prevention messaging, and how to sustain hope and humor even when “wrapped up like a tray of supermarket sushi.”

“Living with this disease has changed the way I look at people around me,” you write. “I wonder what pain they bear silently.” How has your experience of compassion—your understanding of other people’s pain and suffering—changed since your diagnosis?

I don’t look like a person who has terminal cancer. I move through the world as a regular person—and yet I have all this pain and challenges I have to work through, from getting out of bed to getting where I need to be. It changed how I look at people — if strangers are cranky, pushing you on the subway, struggling to get a seat, I try to think about what might be behind that, what’s difficult in that person’s life, what’s making it harder for them to get through the world.

While you acknowledge the unrelenting pain and depression that comes with living with cancer, there’s more hope than despair in the pages of In-Between Days. Where do you find your wellspring of hope?

Pain Management.

An element of it is how I’ve always seen the world. I’ve always erred on the side of optimism and beauty and appreciation and gratitude. But I have to have hope. I think it’s the only way you can live with this sort of disease and go on living, doing the things you love. A lot of my hope comes from the firm community I have. I’m really lucky in that regard. I have good family and good friends. That goes a long way because it means I have support—it’s easier to feel hopeful when you have support.

I get hope from watching the news and seeing how many new treatments are being developed all the time. I get hope from reading stories of exceptional responders—people who have lived a really long time with this disease. Because it is possible. Maybe I will get to have a normal lifespan. I’ll get to see change that is meaningful. So long as it’s possible, there’s hope there.

How did writing In-Between Days change your understanding of yourself, your own illness, and illness in general?

Before my diagnosis, I was director of marketing for the Nature Conservancy of Canada. My job had become very much entwined with my identity. I lost that when I got sick and had to stop working. There was this chunk of me that was missing. I didn’t have the ease of identity that you have when you have the knowledge that you’re contributing to society. Writing this book helped me work out what my place is now, how I fit in as a person living with illness, and how I can still contribute to the cultural conversation. The act of writing it helped me work out in real time how I feel about what I’m going through and how to communicate it. Writing and drawing about it caused me to think about being sick or having an incurable illness in an analytical way.

“I know my cancer is genetic, but I can’t help but blame myself sometimes,” you write. “I wonder what awful thing I did to deserve to get cancer. I run through all the bad things I’ve ever done.” You’re an atheist, but still occasionally entertain the notion of illness as some sort of divine punishment for personal moral failings—a common impulse for anyone looking for an answer to the question “why me.” Why do you think you sometimes go down the road of blaming yourself or looking for things you’ve done to “deserve to get cancer?”

Cancer gratitudes.

We live in a society with so much messaging about prevention. With all that prevention messaging, where we were told ‘if you do this and this and this, you’ll be okay,’ it feels like if you do all these things and you’re still not okay, it must be your fault. That messaging is really deeply embedded in our culture. It comes, in some cases from the medical community, and also from other people. It’s a hard one to get around. Many of us feel this way. I’ve been told by many medical profs that this disease was coming for me, that it’s hereditary—but I still think, “well, I was on the pill for a few years, what about this and that,” things I did, be they moral or physical. I feel awful for people who don’t have that reassurance. I don’t know how to reconcile these feelings.

Then there’s the hyper-personal element—I’m Jewish and we have a special kind of guilt. My husband was raised Catholic and I was raised Jewish—the two primary guilty religions. He once said that Catholics feel guilty for what they’ve done, Jews for what they haven’t done.

“Friends stop themselves from sharing their problems, mumbling, ‘I mean, I have no right to bother you with my little problems. You have cancer,’” you write. “And in that moment, they’ve simultaneously raised me up and shut me out.” People often get uncomfortable and withdraw when a friend of theirs is ill. What are the most helpful things friends have said or done for you during illness?

Invisibilities.

Every cancer patient appreciates different things. For me, a big part has been offering something concrete. If someone asks, “What can I do to help?” I rarely have something at the tip of my tongue. But if someone says, “Can I bring you soup?” or “Do you need rides? I’m available x and y day”—that’s helpful. Sometimes my brain is really cloudy and I’m not able to come up with something – I appreciate people just being regular friends and telling me what’s going on in their lives, even if it feels like complaining.

But it’s really just showing up. There’s gonna be a misstep on one side or the other on any relationship. It’s more acutely felt with cancer or any serious illness. We always have to negotiate. Language is imperfect. Communication is this iterative process—we’re able to get there if we both try.  

How has this illness affected your friendships?  

With metastatic breast cancer, friendships are sometimes really brief and really bright. Because survival is so short, everyone I’ve met with this disease is trying to pack as much as they can in. We’re all living hard and bright. And that’s a special thing to experience with someone.

Which artists and writers most influence your work?

Helen Frankenthaler is my favorite painter. I particularly like her works picturing big objects pressing against tiny little narrow spaces. Writers, I love Lydia Millett and Lydia Davis—my two Lydias. Art Spiegelman. I love Maira Kalman—her book My Favorite Things.

You manage to hold onto your sense of humor during treatment — “I couldn’t stop laughing,” you write. “Having been wrapped up like a tray of sushi, I asked the technician to go into my purse, take out my phone, and take a picture so I could show my husband.” How do you make yourself laugh in the midst of cancer treatment?

Cover art to In-Between Days.

I feel like who we are when we’re well is who we are when we’re sick. If we have a tendency to laugh about things when we’re well, I think we’re still laughing when we’re sick. If we tend to take things very seriously, we do that when sick. Humor is partly a coping mechanism, a way of getting through it. Part of it is also the fact that this was all new to me, since I had no real experience with the medical industry. I was discovering things like a little kid— “This is so cool! This is amazing!” They can’t stop laughing. To a degree, I’m like that. It keeps me from going in a dark direction. I have the capacity for both, and finding the humor in something helps me to not just see how dismal it can be.

You can buy a copy of In-Between Days on Amazon here.