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Health & Fitness

How To Survive Your Child’s Cancer Diagnosis

A child getting sick is every parent's worst nightmare, but by keeping vigilant and accepting the support of others, you and your family can get through this.

Your child has cancer.

On January 29, 2015, Brandi and Mike Matthis of Baton Rouge, Louisiana heard that devastating sentence about their daughter, Alli, who was six at the time.

Alli was so exhausted she couldn’t walk from the sofa to the fridge for a snack. Her pediatrician said it was anxiety and wanted Alli to have a consult with a psychologist before she would do a blood draw. However, Alli was acting totally unlike herself and Brandi’s intuition told her something was seriously wrong.

Two days later, mom got Alli in to see a pediatrician, a family friend. He did a blood test that day: Alli had Acute Lymphoblastic B Cell Leukemia.

“Her white blood count should have been between 5,000-10,000,” Brandi says. “It was 500,000.”  Alli’s organs were starting to shut down and she was in danger of having a stroke. The local hospital airlifted her to St. Jude Children’s Research Hospital in Memphis where she remained for the next 10 weeks with Brandi.

The next couple of years was an upsetting whirlwind of weekly chemotherapy treatments both in Memphis and at a satellite of St. Jude’s in Baton Rouge. The chemotherapy for Alli’s particular type of cancer should have been straightforward and not terribly harsh. However, Alli’s genetic makeup was unusual and made the chemo even harder on her body than most. She dropped below 55 pounds and could not walk for the next two years. A couple of times her reaction to the treatment was so severe it nearly killed her.

But Alli survived. Today she walks on her own, goes to school every day, and has been cancer-free for more than a year.

So how do you make it through a parent’s worst nightmare? Here’s what Brandi says got them through their child’s cancer diagnosis.

A blonde s kissed by her daughter on the cheek, who is wearing a headband because she is undergoing cancer treatment.

Brandi and her daughter Alli during treatment.

Accept Help and Gifts

Some people would rather do everything on their own. But if your child has cancer, Brandi warns, this is not the time to go it alone. Whatever people offer; accept it.

For two years while Alli was in treatment, friends put together a meal drop-off schedule and a cooler sat on the Matthis’s front steps for deliveries. It was a small thing, but it made a huge difference: it means that for every night for two years, the Matthis family never had to think about making dinner.

Have pets? When Godiva, the Matthis’ young, energetic dog, needed more exercise than they could provide because of Alli’s treatment, another friend set up a private Facebook group of volunteers. They came over and took Godiva on long walks or brought their own dogs over to play with her in the backyard so she was too tired to be a concern. While Brandi had briefly considered rehoming the dog, both daughters were devastated at that possibility. Saying yes to a group of volunteers who let themselves into the backyard every few days meant that didn’t have to happen.

A girl without hair in the midst of chemo treatment pets a brown dog.

Alli and her dog, Godiva.

“When people ask to do something for us it may be our nature to say, ‘I got it. I’m good.’ When your child is going through something so traumatic [as cancer], say yes.”

If you are horrified at the thought of allowing a friend, acquaintance or even a stranger to spiff up your home for free, let that go. Don’t stop anyone from unloading and loading your dishwasher or helping you fold laundry. These small bits of help will be life-savers, because chemo makes the immune system weak and accepting cleaning help means your child is less likely to pick up a life-threatening infection. “Someone even offered to come over and sanitize the house before we got back from a chemo treatment at St. Jude’s,” Brandi says. “And I said yes.”

As for gifts, don’t worry about a sick child getting spoiled. If someone asks for your address because they want to drop something off, give it to them. These are not normal times. Whether it’s a coloring book, a deck of cards, a fancy dress or a gigantic inflatable unicorn that shows up on your front lawn with a loving note, the distraction of opening a present can go a long way with a sick child.

“When people ask to do something for us it may be our nature to say, ‘I got it. I’m good,’” Brandi says. “When your child is going through something so traumatic, say yes.”

Question The Doctor

You are your child’s advocate, so o it’s your duty to understand her treatment protocol.

“You have to ask questions,” Brandi says. “I don’t care if you have to ask 3-4 times. You ask them until you have understood the answers.”

“Even at an amazing hospital, people are human and they make mistakes. You are your child’s voice. You have to be on top of everything.”

When you pick up medications for your child,  make sure they have given you the right medicine and the right dose. Several times Alli’s doses were off; Brandi only caught it because she kept a journal of everything Alli was taking.

“Even at an amazing hospital, people are human and they make mistakes,” Brandi says.  Be sure you know what’s going on at all times and make sure every doctor, physician’s assistant, nurse and pharmacist is correct about your child’s treatment. Your child’s doctor has a lot of very sick patients, but you have one very sick child. “You are your child’s voice. You have to be on top of everything,” she says.

But Remember: Google Is Not A Doctor

Google can devastate you or give you a sense of false hope at the most vulnerable time in your life. You don’t need that.

Looking up your child’s diagnosis and prognosis may be tempting, but since every child responds to treatment differently, it may not be wise. Alli had a tough time with a treatment that was supposed to go smoothly. Some children sail through treatments that are harsh on others. Google can devastate you or give you a sense of false hope at the most vulnerable time in your life. You don’t need that.

Research Hospitals Before Treatment

Once your child starts a treatment protocol, whether chemo, radiation, surgery or all of the above, you cannot change where she is being treated unless that treatment has failed. That means picking the right hospital from the outset is key. Discuss the options with your pediatrician, take notes, and make a list of the pluses and minuses for each.

Brandi says her family was lucky because St. Jude’s has a satellite affiliate in Baton Rouge, so Alli only needed to go to Memphis for treatment periodically. And when she did, Brandi and Alli stayed at the Ronald McDonald House along with other families whose children were receiving cancer treatment at St. Jude too. Ronald McDonald House, which does not charge for accommodations, was an incredibly supportive environment for the Matthises, allowing them to face some of the roughest spots of Alli’s treatment surrounded by people going through the same thing.

A little blonde girl smiles as she holds up a certificate showing that she has successfully undergone chemotherapy.

Alli posing with her certificate declaring her cancer-free.

Take Care Of Your Family’s Mental Health

Beyond the pain and discomfort of treatment, your child will navigate a forest of powerful emotions as they go through treatment: fear, anxiety, and uncertainty. Your child may also make friends at the hospital who don’t survive, as Alli did. “I don’t know how Alli will process that,” Brandi says. “It was devastating and one of the reasons why I had her see a child psychologist. I didn’t want her to keep all of that in and then explode when she’s 16.”

“If you have a religious faith, go towards that. If you don’t, go towards the people you love.”

If psychological services are available to your family and your child, take advantage. Don’t burden your child with negative feelings you can address with a professional, a friend, or a clergy member. “If you have a religious faith, go towards that,” Brandi says. “If you don’t, go towards the people you love.”

The Lighthouse Family Retreat a faith-based organization that helps families of every denomination get through childhood cancer, was a big help to the Matthis family too and they attended two week-long beach retreats. Ask your child’s doctor or your clergy about other organizations like it that can help give you strength while your family lives through childhood cancer.

Essays

In Defense Of Oversharing

When you live with a chronic condition, getting comfortable with vulnerability may be your greatest strength.

When a beloved pet, like a cat, gets sick, it hides under the bed and refuses to be touched.

It’s the same for people. When we’re diagnosed, there’s an instinct to turn inward.

When I suddenly began experiencing pain as the result of a rare spine defect, that was what I did: I turned inward.

I was completely bewildered by the abruptness and severity of the symptoms. It felt surreal: in one moment, I was going for runs along the Charles River and picking out the right blazer for speaking engagements. In the next, it hurt to walk a block or brush my hair.

How could things have gone so terribly wrong?

Keeping My Chronic Pain Secret

I desperately wanted the pain to be abnormal, and so I treated it accordingly—like an unwelcome houseguest that might leave if I ignored it. To acknowledge that my health problem was real or was serious, whether to myself or someone else, felt like a betrayal.

It’s hard to talk about a hurricane when you’re in the middle of it; I was busy battening the hatches and trying to survive. If asked how I was doing, I couldn’t spit out the simplest, most cursory of truths—“I have a back problem”—without wanting to sob. It was too real, too raw.

So I avoided telling anyone about the extent of my health issues and how much I was struggling, unless it was completely unavoidable. Think: my boss, my boyfriend, my roommates.

The Hard Price Of Privacy

The result of my secrecy? My pride and privacy remained intact, even through chronic illness, but inside, I felt just so utterly alone.  As months passed and my normal life—working full-time, exercising, volunteering, social plans—became nearly impossible, it became harder to pretend things were OK.

Once the one year anniversary of my symptoms’ arrival came and went, I realized the pain was here to stay, and that I didn’t have much choice but to open up.

For one, I needed people to know what was me and what was my health condition. If I flaked out on weekend plans, it wasn’t because I was unreliable: it was because I was having a bad pain day. If I needed help lifting a bag, it wasn’t because I was a diva: it was because my shoulder muscles were being uncooperative jerks.

I discovered I needed the support of the people I’d been keeping out of the loop. My friends and family members aren’t mind-readers: I realized that if I didn’t open up and tell them what was happening, I was shutting them off from truly understanding me, and therefore, helping me.

I also became indignant. When I became sick, I was the healthiest and strongest I’d ever been, and since, had done everything I humanly could to cure myself. In short, I’d done nothing wrong. My birth defect wasn’t my fault, so why should I live in shame because of it?

Sharing about my chronic pain was an act of rebellion and defiance.

A beautiful girl in an aqua tank top with brown hair and glittery earings smiles and looks up.

Emily Lemiska. Photo: Ars Magna Photography.

Opening Up Online

So I began to talk about what I was going through.

It started with Facebook posts and duck-face selfies in hospital gowns. Life is a mixture of ups-and-downs, so I was careful to share both my hardships (like getting frustrated with an insurance coverage denial), and the triumph (like figuring out some yoga poses that didn’t hurt). Eventually, I started my own blog and began submitting the occasional story about my experiences to small news sites.

Turns out, oversharing is amazing.

When I was honest and candid about my new reality, people rallied around me. If I posted about having a particularly rough patch, they knew to call and check in. When I explained the mechanics of the defects in my neck and how it affects my body, people began to understand and anticipate my limits without me having to remind them what I could and couldn’t do.

I also finally felt seen. Every human being wants to be understood and validated. We want to feel connected. I needed people to recognize the full picture. Yes, I am still the girl who laughs too hard at terrible puns, who puts her whole heart into her work, who is obsessed with her cat.  But I’m also the girl who lives with a disabling health problem, who has had to become braver than she ever wanted to be. I needed to share the full picture of me: the good things and the hard things.

Giving My Pain A Point

But the most wonderful thing of all about oversharing? It helped people.

I started getting comments about the stories I wrote, emails from strangers. “To read about other people sharing their stories makes something good happen in me,” said one person. “Everything that was written sounded like my EXACT story, feelings, and words. It’s not often someone knows exactly what you are going through,” wrote another.

In sharing, my pain had a point.

I’d also hear from friends and acquaintances who were going through something similar or knew someone who was—people I had no idea could relate to my experiences—and wanted to talk.

This ability to helping others feel less isolated, in whatever small way, began to make oversharing feel not just like a choice, but a responsibility.

In sharing, my pain had a point.

How To Share

Of course, there is a right and wrong way to approach sharing. You need to pick the right time, place, and person. It’s easy to alienate and overwhelm people with details about chronic illness, so instead of revealing your entire life story in one breath, share a tiny bit of vulnerable information at first. Let them ask follow-up questions or wait until they open up with you about themselves; that way can reasonably assume they’re interested in hearing a bit more.

It’s also important to consider why you’re sharing personal details. Are you doing it because you just want to be honest, or is it because you want to vent or get sympathy? When you’re opening up, make sure you’re doing it without a particular agenda. The only good reason to share is the simple desire to be authentic.

As folks with chronic health issues know better than most, life is just too short, and too precious, for small talk.

Once you figure out the best approach, give it a try. It doesn’t have to be about your health—it could be anything. What is the thing that makes you feel different or alone? What is the thing that makes you feel passionate or excited? What is the thing that makes you feel vulnerable or scared?

Talk about it! Maybe even… overshare about it. As folks with chronic health issues know better than most, life is just too short, and too precious, for small talk.


Even though Emily had to leave full-time work because of her health, she now works part-time as Director of Communications for the U.S. Pain Foundation, an organization that believes in the power of patients telling their stories as a way to advocate for change. To learn more about the U.S. Pain Foundation or view its INvisible Project magazine, which highlights the stories of people with pain, click here.

Top photo credit to Michelle Gardella Photography.

Essays

I Tried To Quit My Job Because Of Psoriasis, But Thankfully, They Wouldn’t Let Me

Through their support during my worst psoriasis flare-up, I got a glimpse of the way more people should be supported during their health crises.

This post is part of a collaboration with Inspire, a healthcare social network with more than one million patients and caregivers.


Ever since my sophomore year at university, I wanted to become a church minister. Up to that point I didn’t have a clue what I wanted to do when I “grew up.” But that summer, through a mission project in San Francisco, I discovered my passion for spirituality and helping others. After that, motivated by a new sense of purpose, I worked diligently to complete my undergraduate degree with an eye to apply to graduate seminary education. And I wasn’t going to let anything get in the way of reaching my goal… especially my stubborn, severe case of psoriasis.

The dermatologists at the University of California, San Francisco (UCSF) first diagnosed me with psoriasis at nine years old. The disease inflames the skin by overproducing skin cells, leading to raised, red, itchy plaques that often flakes off in silvery white scales. Psoriasis is the most commonly diagnosed autoimmune condition, with about eight million people living with it in the United States alone, but despite this, it is rarely talked about, especially publicly.

My case of psoriasis is considered severe because it covers over ten percent of my body surface area. Even though I tried to hide it, I was always self-conscious about it. I could feel people staring at the visible patches on my hands, scalp, ears, legs, and arms, and imagined what they were thinking: is he contagious? Can I catch it?

I did everything I could to hide my condition, even wearing long pants and sleeves in the summer. You wouldn’t catch me dead at a public pool. Even so, I took an overcomer’s attitude in life believing I could do anything I set my mind to.

The Worst Psoriasis Flare-Up

Despite my ongoing battle with psoriasis, I completed seminary and successfully interviewed for my first church position as an associate pastor in the San Francisco Bay Area. Things went well, and I felt my life was on track, but five years later, my psoriasis spiraled out of control, and I found myself virtually covered from head-to-toe with unsightly flare-ups.

I tried in vain to find any semblance of relief. I couldn’t sit still, or focus on my computer, for more than a few minutes, due to the discomfort and inflexibility of the inflamed skin. I felt self-conscious when meeting parishioners, who couldn’t help but notice the plaques covering my skin when we shook hands. At nights, I battled insomnia from the intense itchiness; during the days, when I was trying to fulfill my office hours, I was lethargic and listless.

Psoriasis had turned every moment into agony. How could I continue to wait and work through the next two months?

At that point, my dermatologist told me he no longer felt he could handle my case alone. He referred me to a preeminent psoriasis specialist back at the UCSF Psoriasis Treatment Center for a second opinion. The nearest appointment was two months away, but my psoriasis had turned every moment into agony. How could I continue to wait and work through the next two months?

An Asian man wearing glasses dressed in a purple polo shirt.

Howard Chang.

Should I Quit My Job?

I remember the exact moment that psoriasis flare broke me down emotionally. I was sitting at my desk in the living room, trying to work on my laptop after dinner, when I suddenly brought my hands up to my face and began to sob.For the better part of an hour, I cried, until my wastebasket overflowed with used tissues. Concerned, my three young children took turns trying to comfort me, with a hug or a glass of water. I felt sorry they had to see their father in such a sad state, but I just couldn’t take it anymore.

Later that evening, I decided to resign my post at the church. I felt hopelessly inadequate to perform any of the duties expected of me at an acceptable level. Worse, I thought that if I continued on my current course, I might have to undergo the humiliation of being fired. I knew my hire split the leadership, with one deacon leaving the church a few months after I started, and I had since been grilled about dropping attendance numbers in the church group I oversaw. And that was before I had head-to-toe psoriasis. Why would they possibly keep me on now?

The next day I drafted my letter of resignation and made an appointment with my supervising pastor to let him know my decision.

I had head-to-toe psoriasis. Why would they possibly keep me on now?

Finding Support For Psoriasis

But my resignation did not go as planned.

As I walked into the meeting with my pastor, I imagined how it would go. I would explain to him all the ways in which keeping me on staff weakened the team. The pastor would then tell me how sorry he was I felt that way, but of course, he understood my decision, and even agreed with it. It would be best for everyone if I moved on.

But that’s not how it went. To my great surprise, the church’s leadership wouldn’t accept my resignation. The pastor wouldn’t even take it from my hand. Instead, he showed compassion. He asked me how my psoriasis was affecting my work, and how he and the staff could support me so I could make it through this difficult time.

My church’s support wasn’t just empty words. It turned out one of my colleagues had a family relation to the dermatologist I needed to see at UCSF. She got my appointment moved up with him to the following week.

To my great surprise, the church’s leadership wouldn’t accept my resignation

Moreover, I was immediately granted a three-week leave of absence, to rest, recover, and get away from the stress that contributed to my psoriasis flare-up. I decided to take a seventeen-day cruise through the Panama Canal with my parents and ten-year-old daughter, which in addition to the relaxation it would offer would allow me to sunbathe: an ancient remedy for many skin conditions.

During that cruise my immune system finally started calming down with some help from a new treatment prescribed by the UCSF dermatologist. The sunlight not only helped to improve my mood and skin, I also saw it as a symbol of a new way of seeing my psoriasis and work.

The Unintended Benefits Of Psoriasis

For decades, I saw psoriasis as an enemy to overcome. I hid it as much as possible from others, not wanting their sympathy or pity. Wanting to be ‘normal’, I pretended I didn’t have psoriasis. If someone had asked me what benefit I received from having psoriasis I would say absolutely none. But after I returned from the cruise, I found myself better able to accept my psoriasis. Sure, I’d rather not have it, but like most of the hardships we are burdened with in our life, there were ways in which it was a blessing in disguise.

For one thing, psoriasis allowed me to truly see how strong the support of my community was. During my most recent attacks, I had feared they would resent me for not being able to do more for them. I saw my role to help others, not to be helped: I officiated their weddings, visited them in the hospital, and oversaw the burial of their loved ones, but I didn’t think they had any obligations to me. But that’s not the way they saw it. My church–leadership and parishioners both–believed it was time to give back, with one colleague even going so far as to offer me a free flight to Toronto to see a well-known Chinese herbalist who specialized in skin conditions. I grew closer to those in my church community as a result of the shared experience.

My openness in sharing my struggles with psoriasis ended up giving a voice to others in the community who lived with hidden chronic diseases.

My condition also brought greater awareness to those living with chronic health conditions. I began to regularly share about the ups and downs of my experience with psoriasis when speaking on Sunday mornings or writing newsletters to the congregation. In the church where I worked, health conditions were often kept secret to avoid the questions, embarrassment, and unwanted attention that they might bring. My openness in sharing my struggles with psoriasis ended up giving a voice to others in the community who lived with hidden chronic diseases. It even turned out that a few church members had their own skin diseases, which they had never told anyone about.

Through my church’s support during my psoriasis nightmare, I became a better person and a better pastor.

Finally, through my church’s support during my psoriasis nightmare, I became a better person and a better pastor. A lot of times when someone comes to you with a problem, you want to fix it for them, but that’s not usually what they’re after: tangible help is nice, yes, but what they really want is is your understanding and empathy. By following the example my church community set, I was able to better show compassion for my fellow parishioners, supporting instead of trying to fix, and listening instead of minimizing the feelings of others.

In my worst psoriasis flare-up, the people closest to me showed me support and kindness I didn’t feel I deserved—especially in not letting me quit my job. Through them, I learned that my success depends not only on me, but also on my community.

I wouldn’t have it any other way.

Health & Fitness

Wheelz in the Air

To Aaron Fotheringham, founder of Wheelchair Motorcross, spina bifida isn't a curse. It's an opportunity to blow people's minds.

Aaron Fotheringham prefers to think of his wheelchair as something he rides on, not in.

At 26, the Las Vegas native is the world’s foremost athlete in the sport of WCMX, or wheelchair motocross. Like professional skateboarding or BMX, it involves using a wheelchair to do daredevil tricks and jumps, with points awarded for technique, difficulty, and flair. Fortheringham literally invented the sport; he initially called it “hardcore sitting.”

“I love being on the chair. I’m able to pretty much have a skateboard with me everywhere I go,” quips Fotheringham. Another personal preference: he goes by “Wheelz.”

To see Fotheringham, who was born with spina bifida, a defect of the spinal cord, launch himself airborne at high speeds is a true spectacle. More often than not, society couches the disabled as individuals in need of protection and supervision. In a ten second clip of Fotheringham soaring off a mega ramp, then landing, that stereotype is wholly ruined. It is powerful stuff.

It was exactly this sort of clip that kick-started Wheelz’s career.

How To Go Viral On YouTube

On July 13th, 2006, at an extreme sports summer camp, a young Fotheringham was recorded landing his first backflip. A counselor there had the good sense to upload it onto YouTube (“Aaron Fotheringham: FIRST backflip in wheelchair!!”), where it quickly went viral. Within months, Fotheringham had his first sponsor, a German tires manufacturer called Schwalbe. Then came invites to show off his skills around the globe. More sponsors offered their services, like Box, a custom wheelchair maker in Texas.

All the while, Fotheringham was pushing the envelope, working on harder and harder feats. Following the backflip was a frontflip, then a double backflip, a 360, grinds and other bodily contortions. This August he completed for the first time something called a “flare”, a backflip 180, at a massive ramp in Woodward, California, where he had landed his first backflip twelve years earlier.

Pain is a constant. Fotheringham has broken his front teeth out several times; he gets them super-glued back in. Because he’s anchored to his chair, he receives more head injuries than your average skateboarder, who can land on their knees; when he falls, his head is pitched groundward to the side; he has suffered more concussions than he can count. Between thirty and thirty-five chairs have broken beneath him (his new custom chairs are made of aerospace-grade aluminium alloy).

Yet despite it all, each drop in remains as scary as the first. “Your heart starts going crazy and you’re telling yourself, ‘Just chill.’ But looking down, this thing makes you sick to your stomach. You need to shut the brain off and be completely present.”

Learning To Wheelchair Skate

Fotheringham was eight the first time he attended a skate park.

He remembers his first drop in. His older brother Brian helped him get to the top of a quarter-pipe. He leaned over, letting gravity set in. He ate it. But he kept returning, motivated by dreams of one day riding alongside all those guys he watched on TV during the X-Games: legends like Travis Pastrana, Bob Burnquist and Danny Way. A

fter he mastered the quarter-pipe Fotheringham moved onto the half-pipe, then the next biggest ramp, and the next.

“I was pumped,” he recalls of those early days. “I was terrified, too, though. I remember just being constantly so terrified.”

Eventually a man at the park named Joe Wicker, “a super rad dude with long hair”, began informally coaching Fotheringham, who progressed quickly.

One nice aspect of growing up in Las Vegas was its high concentration of skate parks “within pushing distance” and after Fotheringham had exhausted all of the ramps at one park, he’d move to another. For the skate-obsessed adolescent, “each new park was like an episode in a video game.”

Aaron Fotheringham, in a rare shot obeying the laws of gravity.

“A Great Opportunity”

In his homelife Fotheringham’s disability hardly registered. He grew up with five siblings; he was adopted. His parents treated all of them the same. “They wouldn’t give me any special treatment,” he remembers.

His school wanted to, though. They tried to put him in an adaptive PE class but the young Fotheringham rebelled. “I didn’t want to be treated specially. It just felt like, ‘Why can’t I just be with all the other kids?’” He stayed in the regular class.

Yet, despite doing just that, Fotheringham did not get into wheelchair motocross with the intent of challenging stereotypes. But he is happy to change minds, to convince people to “see the chair differently” (he once smilingly described spina bifida as “a great opportunity”).

“Being able to help that stigma get pushed to the side is huge,” he says. “That’s kind of become my goal, to push the message that a wheelchair is more of a tool, something to help you succeed, rather than a ball and chain.”

“A wheelchair is more of a tool, something to help you succeed, rather than a ball and chain.”

In his case, actions speak louder than words.

At the Nitro Circus, an influential extreme sports touring show put on by Travis Pastrana, tens of thousands of people see Fotheringham do his thing every year. He has toured with the show since 2010, from Auckland to Denver. “It’s such a rush to see the whole crowd there and have everyone just cheering. It’s a cool feeling,” he says.

It was through the Circus that Fotheringham befriended Pastrana, his childhood idol. The skateboarder once said of him, “Aaron ‘Wheelz’ Fotheringham is really cool. He’s got the most dry sense of humor you could ever imagine. First time I saw him, he hit the ground. He’s laying there, [yelling], ‘I’ll never walk again!’”

Catching some air. Photo: Aaron Remkus

The First Try Is Always The Hardest

Fotheringham’s success, though a dizzying whirlwind, has been the unlikely realization of a childhood dream. In creating his own sport out of  (and through) thin air, in shattering all preconceptions of what a kid in a wheelchair could accomplish, Fotheringham has lived out his fantasy.

He’s still living it. He continues to tour with the Nitro Circus. He and others are trying to get WCMX into the Paralympics.

Alongside nurturing a successful speaking career, Fotheringham was recently married. He is also, of course, always among ramps working on new tricks.

“The first try is always the hardest,” he says. “After the first try you can figure out what you need to do. But it’s about building up that courage to actually go for it. The first time is the hard part.”

Essays

My Son Gave Me A Kidney. He Has Been Chronically Ill Ever Since.

I'll probably never know if he got sick because he donated an organ to me, but after years of soul-searching, I'm determined not to let his kidney go to waste.

On May 15th, 2007, my 22-year-old son, Dylan, saved my life.

He donated a kidney to me.

It wasn’t my first kidney transplant. In 1993, over the span of three days, my renal function plummeted to 3 percent, leaving me in dire need of a new kidney. After what seemed like endless tests, I was diagnosed with ERSD, End Stage Renal Disease. But after surviving 5 years on hemodialysis, then spending 8 wonderful years with my first transplanted kidney, I became gravely ill again. For some unknown reason, my body rejected my anti-rejection medications I’d been taking for so long. By the time my symptoms appeared, it was too late to save my kidney.

My youngest son, Dylan, sat beside me on my hospital bed. At 6’3”, he was like a giant as he wrapped his arms around my frail body, enveloping me in hope and love. “Mom, I want to test to be your donor,” he said.

Doctors assured us he would be fine living with one kidney. After much discussion, the tests were administered, and he was a perfect match. On May 15th, 2007, Dylan and I were wheeled, side by side, on gurneys down the long, lackluster hospital hallways to our individual operating rooms.

And just like that, my life became mine again, thanks to my son’s gift.

It’s been 11 years since my son gave me his kidney and I remain healthy, living a normal and happy life. But I can’t say the same for my son.

It’s been 11 years since my son gave me his kidney and I remain healthy, living a normal and happy life. But I can’t say the same for my son.

Weeks after surgery, he began experiencing excruciating joint inflammation leaving him unable to walk or care for himself. He was initially diagnosed with gout. His rheumatologist prescribed several medications, but the results were abysmal.

He has since been diagnosed with fibromyalgia, rheumatoid arthritis, and chronic fatigue syndrome. Additionally, due to the intense pain and crippling flares these conditions present, he quickly became addicted to his pain medications, presenting another challenge to overcome.

His chronic pain left him broken in spirit,  and a prisoner in his home. Since he could no longer work or party, his friends disappeared.

I couldn’t help but wonder if this was due to him donating a kidney to me.

There are no definitive answers for us as to whether organ donation caused his illnesses or made his body more susceptible to them. Studies indicate some donors may be more prone to developing ESRD than others but even those results are not conclusive. Lainie Friedman Ross, a physician and professor of bioethics at the University of Chicago says: “The consequences of organ donation might not be apparent for decades — and the risks are not the same for everyone. Young or minority donors have a higher rate of kidney failure than the general population.”

So maybe the sudden onset of his illnesses were brought on by kidney donation, or maybe it was all a coincidence. As Dylan’s mother, though, I couldn’t help but feel guilty either way.

I felt heartbroken watching my son, the person who saved my life, walking around my home barefoot with a cane. He was unable to wear shoes or slippers due to the inflammation in his feet. It was ironic, because thanks to him I could walk and hike for miles again… just not with him, as I longed to do.

So maybe the sudden onset of his illnesses were brought on by kidney donation, or maybe it was all a coincidence. As Dylan’s mother, though, I couldn’t help but feel guilty either way.

As my son suffered, my guilt grew, because the reality was I was feeling better than I had in a long time. So I temporarily moved in with him, helping with every aspect of his daily routine: going to the bathroom, getting himself into his shower chair, helping him dress, get in and out of bed, and so on..

Mary McLaurine and her son, Dylan, who donated a kidney to her 11 years ago.

As a mother, and the person for whom he had (perhaps) sacrificed his health for, all I wanted was to help Dylan get better. But nothing worked entirely, and even when it did work, the side effects added new wrinkles to his suffering. For example, ome steroidal medications helped with his inflammation and pain, but led to sudden mood swings, uncomfortable boating, and persistent nausea.

He knew I blamed myself for his debilitating illnesses, and the guilt was eating me alive. I did my best not to burden him with my self-blame, but it was impossible for him not to notice, at least a little, the tears that would sometimes fill my eyes as I saw him suffer.

How could I not blame myself?

One quiet morning, when he finally noticed my tears, we sat down and talked. He let me off the hook. He told me he never regretted his decision and would do it again tomorrow. But what he said next was profound.

“Mom, I gave you this kidney because I love you, you gave me life, brought me into this world and I wanted to give you that same gift back. We may never know if the transplant is the reason for my chronic illness, but we do know it has given you a new and wonderful life. And that life will be ruined if you keep carrying this guilt with you, because the doctors have told you that stress can injure your already compromised immune system. Don’t let my kidney go to waste. The best thing you can do to help me get well is allowing me to witness you living your life to the fullest! Joy is good for my soul, and yours.”

“We may never know if the transplant is the reason for my chronic illness, but we do know it has given you a new and wonderful life… Don’t let my kidney go to waste.”

I realized he was right. From that moment on, I tried to focus on my gratitude, not my guilt. Some days were still hard, and  I could feel the guilt rise in my throat like a poison trying to escape, but then I would try to recenter myself, remembering that regardless of whether or not giving me his kidney had caused his health woes, I still couldn’t let it go to waste.

And as my attitude changed, it had a positive impact on my son too. We were now linked, he and I, by the kidney that he had given me. In a way, we both shared a body, and as my guilt went into remission, Dylan began responding positively to new medications. His activity levels spiked, and he was able to get off opioids. His arthritic flares have calmed, and we are optimistic things will continue to get better. Changing to a healthier diet, and routinely exercising has allowed him to get out and do routine shopping, outdoor activities, and even socialize with friends.

Watching Dylan’s health spring back has helped further alleviate some of the guilt pangs that surface in me from time to time. And every year, on May 15th, my son and I celebrate our lives, his monumental decision to donate life to me and my unwavering appreciation and gratitude for his generosity and love. We don’t look back anymore. We move ever forward.

He is my hero.

Creative Common photo by Helen Taylor.

Essays

My Grandmother’s Murder and My Decade Of PTSD

Today, I’m still finding ways to cope, and I probably always will be. This is my reality after living with PTSD for a decade.

Two weeks after the murder, my tenth-grade biology teacher sent me an oversized greeting card in the mail. In different colors and sizes, students I knew—and some I didn’t—had filled it with condolences. I went to a small school in a small town and everyone knew what had happened. Mom’s mug shot had appeared on the local news just hours after she’d been taken to the county jail in handcuffs. WOMAN STABS MOTHER 20 TIMES had floated across a blue banner under her face.

Everyone knew I was there when my grandmother was killed, and there were no condolence cards for that kind of thing. Mr. M. had made his own by folding a large white poster board in two and stuffing it in a giant envelope. There were no instructions on what to write in a card like that either, so most students wrote I’m so sorry or time heals all wounds or she’s in a better place. Some notes were long, some short, some in ink, some in pencil, but they all shared the same sentiment: it will get better someday.

Everyone knew I was there when my grandmother was killed, and there were no condolence cards for that kind of thing.

The day before it happened, I was awkward and shy and ready for summer break to finally start in two weeks. I loved reading mystery novels and writing poems and posting funny surveys in MySpace bulletins. I hoped to become a writer one day, to write book reviews or interview interesting people about the things that mattered to them. I watched and rewatched the recordings of Pulp Fiction and Kill Bill I’d saved on the DVR so I could quote them on my personal blog of poetry and angst. Back then, I didn’t believe in the idea that life could change in an instant. But then it did: one day I was worried about the grade I’d get on my math test and the next I was hiding in my bedroom listening to my grandmother’s murder.

I’m 25 years old now and I have never forgotten the sounds she made when she died. I have never forgotten what her blood looked like when I walked into the room after it was over—how it was nothing like the kind I’d seen in movies, not even the goriest Tarantino scenes. Last month marked a decade since I received that card from Mr. M., and sometimes I wonder if what I really wanted all those little notes to say was it will go away someday.

The summer I’d been waiting for all year turned out to be the hardest time of my life. I was diagnosed with Post Traumatic Stress Disorder, or PTSD, and was told I needed to see a therapist once a week. I was told it was normal to experience night terrors for a while, but for three months, I dreaded falling asleep. I knew that when I did finally sleep, I’d hear the screams again, see the blood again, relive that night again and again and again. All summer, I slept with the lights on and the door locked and a silver flashlight next to my pillow, and I’d wake up at the same time every night with a circle of cold sweat on the back of my shirt.

On the hardest nights, I experienced sleep paralysis… It was like having an endless panic attack while being stuck flat on my back, completely frozen.

On the hardest nights, I experienced sleep paralysis, a condition that makes you feel trapped in the space between sleeping and waking in which your body cannot move at all. It was like having an endless panic attack while being stuck flat on my back, completely frozen. I confused reality with dreams, and I’d often hallucinate, seeing figures on the ceiling above my bed. In the mornings, I would imagine myself two, five, seven, ten years older and wiser and better. Healed. Fixed. Normal. But time went on and the pain was still there.

Eventually, I could sleep with the lights off or go through a whole night without waking up, but there were triggers everywhere. Anything could spark a flashback. I jumped because a baby screamed while I was waiting in line to take my driving test at the DMV or I ran out of a movie theater because there was a pool of blood on the screen. Friends and family and therapists and books said it would go away eventually. Someday I’d be able to watch a horror movie again. Someday my eyes wouldn’t well up when someone jokingly said, “I’m going to kill you!” Someday I’d wake up and my first thought would be about something other than the murder.

Kristi DiLallo was 15 when her grandmother was murdered while she was in the next room. The symptoms of that trauma still persist; they are very real, and very physical.

Now that the tenth anniversary has come and gone, and as I get further away from the event itself, I feel like the opposite is happening: triggers have gotten louder, more constant. I’ve tried so many times to turn the volume down—through talk therapy, journaling, meditation, and even hypnosis. Over the years, there have been quieter weeks and months, but I’ve still never experienced complete silence. Most of the narratives that actually name PTSD are trauma-to-recovery stories in which time really does heal all wounds and survivors are heroes. And maybe that’s true for some people, but lately, even after all these years, I feel more sensitive than ever to the sight of blood or even hearing the word “murder.”

Now that the tenth anniversary has come and gone, and as I get further away from the event itself, I feel like the opposite is happening: triggers have gotten louder, more constant.

In the beginning, my most frequent symptoms were nightmares. For the most part, they didn’t even have to be triggered by anything; I’d simply fall asleep and have a nightmare about the murder because it was so fresh in my mind. These days, I’m having nightmares again—about twice a month or more—and the triggers can be unpredictable. Of course, some are more obvious, like an unexpected violent scene in a movie, but some are hidden in small pockets of my daily life. PTSD is a difficult condition to explain, because it’s the kind of thing people have to see to believe. We live in a time when trauma is either completely misunderstood or used as the punchline of a joke—the word “triggered” itself has literally become a meme. One of the most difficult aspects of living with PTSD is that it really is invisible: nobody sees those nightmares but me.

Six years ago, I binge-watched the original two seasons of Twin Peaks in one weekend in my college dorm room. I loved the show because it was silly but not stupid, spooky but not gory. It was one of the only crime shows I could watch without covering my eyes, and it offered a meaningful, unique portrait of teenagers grappling with the trauma and grief of a murder in a small town. I recognized myself in many of the characters, even the adults, and I admired them because their grief was loud and absurd all the time: Laura’s mother screaming and crying hysterically, her father dancing with the now-iconic photo of his dead daughter, her best friend searching for the truth about the crime. When you lose someone you love, especially when the loss feels like the stuff of horror movies, you want to scream at the top of your lungs and you want to remember what it was like to look at their face instead of a photo and you want to find out why any of this ever had to happen.

PTSD is a difficult condition to explain, because it’s the kind of thing people have to see to believe.

Last year, I was excited about the long-awaited return of the show, but it gave me the worst nightmares I’ve had in years. Eventually, after watching the first six episodes with a pillow in front of my face, I stopped watching it altogether—after a particularly gruesome episode depicting a bloody car accident involving a child, as well as two stabbing deaths. Friends who knew I loved the original show would text me after new episodes, and I would feel too embarrassed to tell them I’d stopped watching it. I worried about making them feel uncomfortable with the reality of my condition: because of a single night when I was fifteen, I just couldn’t watch the same TV show as them. Recently, I started to ask myself, why am I so ashamed of something I cannot control? Surviving a violent crime is difficult for so many reasons, and the grief and guilt manifest differently almost every single day. Some days I wake up wanting to tell everyone I meet what has happened to me; other days, I want to change my name and move somewhere new and never tell anyone ever again.

Maybe my shame comes from the expectations that other (well-meaning) people have about my trauma. When I do tell people about the murder, the usual response is, “I never would have guessed” or “You look so normal.” There have also been times when I’ve told someone and it made them so uncomfortable that they changed the subject or laughed because they thought I was joking. Even though I often feel completely consumed by the murder on the inside, there will always be people who want me to either perform my pain—in ways that they can recognize from shows and movies about tragedy—or pretend it never happened at all.

“Today, I’m still finding ways to cope, and I probably always will be. This is my reality after living with PTSD for a decade.”

When I think of Mr. M’s condolence card, which I continue to be grateful for, I think of how much other people’s perceptions of my trauma affected my own understanding of it. All these years later, the time heals all wounds narrative just doesn’t make space for wounds like mine—the kind that still sting. Most of those standard clichéd condolences suggest that you won’t be in pain forever, and as a fifteen-year-old girl in the thick of my grief, I saw that as a promise and I clung to it. So what was I supposed to do when the pain didn’t go away? Pretend it wasn’t there and be ashamed that it was.

In the last ten years, I’ve hidden my PTSD from many people in my life—family, boyfriends, close friends—to the point that I hurt myself by not bringing it up. Once, I watched a Scream marathon with a group of friends because I was too embarrassed to say why I didn’t want to. This, of course, resulted in a flood of flashbacks and nightmares I dealt with on my own. In a college sociology course on family relationships, I ran out of the classroom when the professor played a 911 call of a child screaming, “Something bad is happening in my house,” because it reminded me of the night I had to make that call. Again, I felt embarrassed and hysterical and childish, but later, when I told the professor about my situation during office hours, she responded with care and concern. Her only question was, “Why didn’t you tell me sooner?”

I’ve learned that the only way I can expect others to try to understand my PTSD is to acknowledge it myself—and to cut myself some slack.

Since then, I’ve learned that the only way I can expect others to try to understand my PTSD is to acknowledge it myself—and to cut myself some slack. Last summer, after I stopped watching Twin Peaks, I made myself a promise: I challenged myself not to watch any shows or movies depicting murders, especially stabbing murders, for one month. My Netflix queue got a lot shorter, and the challenge definitely wasn’t something I planned on announcing to the world, but almost immediately, I could feel my mental health improve. I slept better. I didn’t wake up crying. I spent more time reading and writing and exercising. There were still other triggers around me, but I learned that setting my own boundaries gave me a feeling of control over a condition that has rendered me powerless so many times.

Today, I’m still finding ways to cope, and I probably always will be. This is my reality after living with PTSD for a decade: I Google movie and TV spoilers so I’ll know if I have to cover my eyes before a particular scene or if I should avoid watching it completely. I cry a lot, sometimes about the smallest things, and when I start, I don’t know how to stop. I get flashbacks on the subway or while I’m teaching a class or while I’m reading a book at home. And all of that is okay. I can allow myself to say no to a slasher movie and I can leave a room if I don’t feel comfortable and I can allow myself to enjoy the beautiful parts of my life, too. I don’t have to feel like a hero when I talk about PTSD, but I don’t have to feel weak or worthless or ashamed either. I know that although this will never completely go away, it does get better. Mine is not a story of trauma-to-recovery, but it is a story of trauma-to-hope, and I’m still learning how to tell it.

Creative Commons photo by Mark Strozier.

Profiles

Why The World Needs More Disabled Superheroes

Becoming a superhero is every kid's dream... but when it comes to disability, it's a dream not reflected in most comics. That's something a new wave of comic creators is looking to change.

In the comic book multiverse, anything’s possible. Characters with X-ray vision, superhuman strength or invisibility occupy each page and no one bats an eyelid. However, despite their extraordinary qualities, our heroes are flawed: they make mistakes, they have very human problems, which tempers their invincibility and makes them relatable.

Unless, of course, you’re disabled. While mainstream characters have chinks in their armor, disabled characters are usually either missing completely, or lazy stereotypes: grotesquely deformed villains, or damaged characters with an axe to grind. There are exceptions, of course–Daredevil is a famously blind superhero, albeit one whose superpowers compensate for his disability to such an extent that he might as well be sighted, and the X-Men’s Professor X is a paraplegic–but by and large, disability has largely been forgotten by comic makers.

But this could be changing. With more awareness of disability representation in the mainstream media, perhaps the superhero multiverse is due a shake up.

A Superhero With Down Syndrome

David Walker’s well known in the comic universe, having written Luke Cage and Nighthawk for Marvel Comics and Shaft for Dynamite Entertainment. As an established author and as a black man who knows what it feels like to be an outsider, he feels a responsibility to bring representation to his work.

David Welker has written comics for Marvel, Dynamite, and more.

“As a kid growing up, I did not see an adequate amount of representation that made me feel like I had a place in these large, make-believe worlds. And I still remember what that feels like. And so now that I’m in a position to create comics, I feel the least I can do is work to make other people included.”

When publisher Lion Forge approached Walker to write for Superb, a new comic about a meteor giving people all over Earth superpowers, Walker was initially on the fence. However, when he heard one of the lead characters, Jonah, had Down Syndrome, he was sold.

“I thought, if someone was going to write a character with Down Syndrome, I wanted to see it done right. I figured if someone was going to mess it up, I would rather it was me messing it up trying to do it properly than somebody to not give the character the love and attention they deserved.”

I thought, if someone was going to write a character with Down Syndrome, I wanted to see it done right.

Having volunteered with children with different developmental abilities, Walker felt well placed to tackle someone who is often misrepresented, misunderstood, or not represented at all.

“I think that everybody deserves characters they can relate to, and those characters should be painted in pictures that are as human as humanly possible.”

Walker read up on Down Syndrome, and ran workshops with children and their families. Then he got down to work. He’s not afraid to admit that creating Jonah meant confronting his own prejudices and preconceptions of what Down Syndrome was.

The cover of the Superb trade paperback, showing Jonah, a superhero with Down Syndrome.

“To admit this is embarrassing and shameful, but there were times I was writing him and I would think, did I make him sound too smart? It’s a difficult thing to admit. I realized afterwards, wow, how prejudicial is that on my part? This assumption that just because a kid has Down Syndrome means he can’t use big words or say things that are really smart, or really funny. And I got mad at myself for thinking that way. That’s our societal condition. And I just had to acknowledge that and grow.”

One concern was giving Jonah the humanity he deserved, in an interesting and engaging story.

“Jonah spoke to me a lot even before I started writing him. I know that might sound odd, but as a writer, you want your character to talk to you and to express themselves in a way in your imagination that makes it easy to write.”

“I think that everybody deserves characters they can relate to, and those characters should be painted in pictures that are as human as humanly possible.”

He also wanted to subvert the idea that disability is a hindrance.

“I wanted to make sure the message was, just because he has superpowers, his powers don’t negate his condition. We all have our strengths and weaknesses, and the Down Syndrome doesn’t have to be a weakness, just part of who he is.

“Jonah’s greatest strength is that everyone underestimates him because of his Down Syndrome, which makes his Down Syndrome his greatest strength.”

Most importantly, Walker’s looking to do what he does best: to entertain, with plenty of action scenes and gripping plots. After all, that’s what his readers like, no matter who they are. “If a kid’s in a wheelchair or if they have autism or Down Syndrome, they’re still a kid, not some other, separate thing.”

The X-Men Of Disability

Across the Atlantic, in Hampshire, UK, Dan White’s been writing and drawing comics for years, producing the children’s comic Cindy and Biscuit as well as the more dark Terminus and Insomnia cartoons.

But it wasn’t until his daughter Emily, born with spina bifida, was three and Dan began to search television, books, and comics in search of characters in wheelchairs, that he realised how little was out there.

So he sat down at his desk, in his living room, and created The Department of Ability, a universe of characters, each with a disability. There’s Billy, a cat with carbon wheels, a radar and a transmitter. Jacob Claypole, who is blind with super-heightened senses and a weaponized cane, and of course, Emily, in her flying wheelchair.

There was nothing like The Department of Ability out there, Dan says. And as he drew, he realized that his project had potential outside his own living room.

“I didn’t know if the world was ready for a mainstream, fun, accessible story about Superheroes that showcases disability as normal, every day and brilliant, which disability is,” he says.

While authors have good intentions, White says many fall back onto tired stereotypes.

“A lot of authors … become unintentionally patronizing or they don’t flesh out their characters, investigate the reality of what this brilliant, diverse, talented community actually want..”

The Department of Ability is a superhero team of characters with disabilities.

 

All this community actually wants is to be seen, read or written about just like everybody else.”

Children know when they’re being talked down to, he says. “Sometimes authors go overboard in the sympathy or educational stakes, when all this community actually wants is to be seen, read or written about just like everybody else.”

“Treat children with equality of mind and they will astound you, children of all abilities have more imagination, glory, and knowledge than those who eternally dictate to them what they think they want to read and see. Engage and challenge your reader and they will adore you for it.”

As for Emily, she’s 12 now and proud of her dad and the characters he’s created. “She continues to plug the idea and its values to whomever she meets, a rare thing for an almost-teenager and gaming, music obsessive,” White says.

White’s 230-page graphic novel—which he describes as “totally original, loud, groundbreaking and unlike anything ever printed—is doing the rounds among publishers, and is getting nibbles in the UK, the US and Asia.

The publishing industry has been slow to come round to Dan’s idea, which is surprising given the attention he’s had from around the world from social media and mainstream news outlets.

It’s been a long time in the making, and he’d like to see it in print. Seeing themselves represented in print is no less than children like Emily deserve, he says.

Why Diversity In Comics Is So Important

New Jersey writer Erin Hawley—a critic who writes about comics and games on her popular website, GeekyGimp.com—has always loved Superman titles, and Betty and Veronica comics. But growing up with muscular dystrophy, there was never any question of seeing herself reflected in the pages she devoured so eagerly.

“I grew up without a strong notion of disability as an identity, so not seeing myself represented never occurred to me until adulthood.”

Erin Walker, a comics critic with muscular dystrophy, says more needs to be done to make comics more inclusive.

Now, she realizes how important it is for people from different groups to see themselves represented in the mainstream. Seeing yourself on the page; and a fair, empowering image of yourself, is vital for self-esteem. “It lets you know that you matter, that disability is part of who you are—and that’s OK.”

As well as wanting to see more disability representation in comic books and graphic novels, Hawley would love to see better-written characters, as existing characters are an “amalgamation of stereotypes and cliches.”

“Or disability is a catalyst for a character’s actions; their disability gives them a reason to be evil, to somehow get back at society or whatever. It always positions disability as a negative. This is especially true for villains or anti-heroes like Professor X.”

Other characters have their disabilities downplayed. “When we do get an awesome disabled character like Oracle (ed. – Barbara Gordon, previously Batgirl, who was paralyzed from the waist down up until a few years ago), their disability is stripped away.”

“I think I could have used someone like me in comics growing up—it would have made the transition to being proud of myself as a disabled woman much easier”

“When all you see in media is negative stereotypes, it lets you know that folks don’t consider you at all. And that’s an especially damaging message to send to kids and teenagers.”

“I think I could have used someone like me in comics growing up—it would have made the transition to being proud of myself as a disabled woman much easier.”

As White says, the time for change is nigh.

“Children and young adults tell me they are fed up with their media image and they love that my work gives them something of their own at last, which is so fun and accessible it can read by absolutely anyone.

“Representation isn’t hard, trust me.”

Essays

Fighting Off Hypochondria in a Mexican Shaman’s Temazcal

A travel journalist tries to outrun her irrational fear of health ailments, only to confront it square on in Oaxaca.

It’s nighttime in Mexico and I am bracing myself against the evening chill as I pull a flimsy, blue bed sheet tighter around my naked body. I am standing in the front yard of a local shaman’s family home—about an hour outside of Oaxaca City—carrying a bushel of basil and twigs as I walk slowly towards the dome-like structure in their backyard.

I am ushered into what can only be described as a large, stone oven big enough to fit about 14 people sitting shoulder-to-shoulder in a circle. Inside, the smell is sweet and warm as the shaman tosses mezcal on hot rocks to release a smoky steam. This is a traditional “temazcal,” a Nahuatl word coined by the Aztecs to describe a ceremony used by indigenous groups in Mexico as a therapeutic and purifying ritual.

Travel journalist Nikki Vargas struggles with hypochondria. Photo: Cantimplora Travel/Nikki Vargas/

The temazcal mixes intense heat and steam with natural herbs, juices and oils to both cleanse the body and soul of whatever ails it. As a New Yorker and skeptic, I am not confident that a splash of mezcal will be enough to wash away my ailment: hypochondria.

As a New Yorker and skeptic, I am not confident that a splash of mezcal will be enough to wash away my ailment: hypochondria.

In its most basic definition, hypochondria is defined as a person who is abnormally concerned about their health. Hypochondria is not an illness, in the classical sense, but rather is an irrational phobia. Most hypochondriacs—myself included—will fixate on a specific health-related fear. In my case, I have an irrational, all-consuming phobia of heart attacks.

I imagine my hypochondria like a debt collector standing with his trench coat collar pulled up, flicking his cigarette in my direction. It’s been days since he’s waltzed in my door and he is eager to shake me down of any serenity I may be holding on to. As a travel journalist, my hypochondria clashes squarely with the career and persona I’ve cultivated over the years. Despite my best efforts, that damn trenchcoat-wearing goon pops up in the unlikeliest of places. I smell the hint of his cigarette and musky cologne at 37,000 feet over the Pacific Ocean, on a sparsely populated island in Indonesia, on the back of a camel in the Sahara, in the backyard of a shaman in Mexico.

Within minutes of my sitting in the temazcal, I am covered in herbs, fruits, and oils, looking as though I’ve performed a gymnastics routine in a grocery store produce aisle. Rose water is poured on my head and face, chocolate is rubbed on my chest, mandarin juice coats my legs, honey is rubbed into my arms, pineapple is used as a body scrub. Each fruit and herb is a spiritual representation that is meant to take away anxiety or cleanse the soul. Yet, I can feel my hypochondria sliding in the small space, sarcastically smirking as if to say, “you think a pineapple will keep me away.” Just like that my hypochondria is sitting next to me in that remote temazcal, whispering fears into my ear.

Rose water is poured on my head and face, chocolate is rubbed on my chest, mandarin juice coats my legs, honey is rubbed into my arms, pineapple is used as a body scrub.

It’s hot in here, you might get a heat stroke. What if you have a heart attack?

Where is the nearest hospital anyway?

What if you’re allergic to some of these fruits or oils?

What if your throat closes up?

The thoughts alone are pesky, but the fears create psychosomatic sensations. At each question, my body seems to respond. My head feels dizzy at the mention of a heat stroke. My heartbeat quickens at the thought of a heart attack. My chest begins to tighten under the weight of the anxiety. My throat begins to itch at the thought of an allergic reaction. Deep down I rationally understand what is happening to me—I can see each worry and its physical response unfolding in real time—but in the moment, rationality is eclipsed by that hypochondria goon.

It would be easy to blame aspects of my life for my hypochondria. As the daughter of a doctor, I was raised with the sort of worst-case-scenario stories one can only tell if they work triage in an Emergency Room. I remember nights spent at the doctor’s lounge while my dad—a single father then—was moonlighting. I remember growing up surrounded by medical encyclopedias and stethoscopes, equal parts fascinated by medicine and terrified. But even my childhood—which I wouldn’t change for the world—doesn’t seem like enough of an explanation. No, if I had to guess, what terrifies me the most is how little warning it seems we get when illness arises. It is the idea that something could be spreading in your body at this very moment and you could be none the wiser. Heart attacks, in particular, appear to be so sudden and random that the idea of them terrifies me.

Photo: Cantimplora Travel/Nikki Vargas/

Despite my very real anxieties, I am ashamed of my hypochondria. People with diagnosed illnesses are fighting for their life, and I’m boxing with a figment of my imagination. I come to Mexico—as I often do when traveling—to outrun my demons. Yet, here he is, comically out of place in this shaman’s backyard, and all of a sudden, I want to push off the title of travel journalist and crawl under my bed sheet.

I am ashamed of my hypochondria. People with diagnosed illnesses are fighting for their life, and I’m boxing with a figment of my imagination.

This is our routine. Every time this trenchcoat wearing jerk saunters in, I fight like hell to chase him away. I am wrestling with my mind in that sweaty temazcal somewhere in the outskirts of Oaxaca, having a mental Mayweather match. My fight against hypochondria begins with breathing. Deep belly breathing to center the body, slow the heart and calm the brain. Next, I need a distraction—a recommended tactic from my therapist—to pull my attention away from the psychosomatic responses, typically it’s a little ‘fidgeter’ or counting. As I work through my tricks, l notice hypochondria’s grip slacken. The fears begin to clear, my body stabilizes and suddenly I am back in Mexico covered in fruit, listening to a shaman. For a good couple minutes, I was elsewhere, yet not one of my fellow travelers would guess. That’s the thing about anxiety, it exists in the darkest recesses of our minds, hidden in the corners no one thinks to look.

With the temazcal ritual over, I step back into the cool night air feeling lighter than I had a few minutes ago. In the corner of my eye, I think I can see the flash of a beige trench coat as my hypochondria slinks off into the night, knowing he lost this fight. I can almost smell him—cigarette and cologne—floating over the Oaxacan night air, but he is too far gone to be a bother anymore. I know he’ll be back in a couple days when I least expect it, but I know I’ll be ready. As I learn to face my hypochondria, to talk about it openly, to learn about anxiety management, and to master techniques to calm myself down, I am becoming a worthy adversary.

Instagram The Good Fight

The Friendliest Place On Earth

What better way to kick off a hot August day than a day at Morgan's Wonderland, the world's first amusement park designed by and for people with special needs?

Morgan’s Wonderland in San Antonio, Texas, is the first theme park of its kind in the world to be designed for people with special needs. This summer, the organization set another world record, opening Morgan’s Inspiration Island, the first fully accessible waterpark.

A nonprofit organization that is bolstered by corporate and community sponsorships as well as a significant base of volunteers, Morgan’s Wonderland has always given free admission to guests with special needs—no questions asked—and hires a significant number of staff members with disabilities.

That sets the stage for people experiencing some things for the first time—riding a ferris wheel or a carousel, even the simple pleasure of swinging on a swing—and getting to do so among friends and family members.

The excitement is palpable. Folks spent a day at Morgan’s Wonderland and its brand new waterpark to capture a slice of that joy.

Photo: Cynthia J. Drake.

“Being here is not like other places. It has diversity and it’s for everybody. They’re really friendly here, and the staff will help you out.”

— Gardenia Ariza of Houston, mother of two, who has suffered complications following two knee replacement surgeries and has been confined to a wheelchair off and on for a year

Photo: Cynthia J. Drake.

The rides at Morgan’s Wonderland, including a ferris wheel, carousel, train, swings and these off-road adventure cars, are all equipped for wheelchairs.

Photo: Cynthia J. Drake.

“I love it. There’s so much to do, so many rides. I like the ones that go up and down and around the best, like the ferris wheel.”

Has it been a long time since you’ve been able to go on rides?

“Well, I can now!”

— Ray Longserre, who traveled with a group of residents from a memory care facility in San Antonio.

Photo: Cynthia J. Drake

“This has been far and away the most rewarding job I’ve ever had.”

I’m sure you experience a lot of powerful moments here.

“You know where Ground Zero is? The swings. To see someone swinging for the first time, and seeing a mom be able to push her child on the swing for the first time … it gets you choked up every time.”

— Dominic Fournier, assistant general manager

Photo: Cynthia J. Drake

“It’s very welcoming to the kids with special needs like my sister who has Down syndrome. My sister really likes the cars.”

— Lizjalet Rodriguez, 15, (right), with sister Stephanie Rodriguez, 11, of Houston

Photo: Cynthia J. Drake

“This is my second year volunteering here with my son Brendan through the Young Men’s Service League, a mother/son organization. My son and I did 35 volunteer hours last year and we just love it, it’s a great experience. You get to see people with disabilities and children who don’t have disabilities interacting with one another. There really are not a lot of other opportunities for that. It’s such a special place.”

— Gretchen Herrmann of San Antonio

Photo: Cynthia J. Drake

“We surprised them. They kept asking, ‘Where are we going, Mom? Where are we going?’ and when we pulled into the parking lot they asked, ‘Is this Disney World?’ It kind of felt like it, being in a big theme park but without the crowds. And it doesn’t exclude anyone — everyone is welcome.”

—  The Reagor family, Montae, Rachel, Ryan and Riley, of Mansfield, Texas

Photo: Cynthia J. Drake

Donna Brandel, a speech therapist, was visiting Morgan’s Wonderland with her nephew Logan, 12, and client Jonathan Teague of Pflugerville.

Brandel: “We really liked reading Morgan’s story—Logan is a fact guy—and I particularly like the special needs staff.”

Teague: “I like all the water parts here and the carousel and all the rides.”

Photo: Cynthia J. Drake

Morgan Hartman, the namesake of Morgan’s Wonderland inspired her parents Gordon and Maggie Hartman to create the theme park in 2005, following a vacation where couple saw that other kids weren’t interested in interacting with their daughter because of her physical and cognitive challenges. Their dream was to create a truly inclusive, welcoming environment for everyone.

Photo: Cynthia J. Drake

“The environment is very inclusive especially for kids with special needs. We don’t feel judged—you feel free, I guess. There’s so many things for kids to do. We come here every week.”

— Meribeth Patterson (right), with her 4-year-old sister Ruby Patterson of Wimberley, Texas

Photo: Cynthia J. Drake

About one-third of Morgan’s Wonderland staff members have special needs themselves. Administrators say this is an important aspect of “walking the talk” and providing positive role modeling examples for children with disabilities to see people like themselves in leadership roles.

What do you like best about your job?

“The little kids—I just like their enthusiasm. Because being disabled myself, I like how I can see disabled kids not only having fun, but being able to interact with other people. Growing up with spina bifida I was always teased a lot being in a wheelchair. … I have to say my favorite moment working here was when I first started working with operations and two little boys stood in front of me, and I asked them, ‘You want a ride?’ and I just gave them a ride around the park.”

— Connie Sauceda, 21, of San Antonio, a staff member since March. Morgan’s Wonderland is her first job.

Photo: Cynthia J. Drake

Morgan’s Wonderland worked with researchers from the University of Pittsburgh to design a brand new waterproof wheelchair that uses compressed air instead of batteries. It contains no electronic components so that it can be fully submerged in water.

Sam Carver, 16, visited Morgan’s Inspiration Island with his parents, Denise Johnson and Darin Johnson from Wentzville, Missouri. Carver was among the first to try out the new chairs, wheeling it around the oversized splash pads at Morgan’s Inspiration Island, getting a refreshing soak on the 100-degree day. (The wheelchair isn’t pictured here, as it had to be recharged with an air compressor).

How did it feel, Sam? Does the chair feel like the one you’re used to?

Sam: “Yes, it felt great. My favorite thing was to wheel around and feel independent and see the new sites.”

Denise: “Does it make you feel grown up? That is exactly what he wants—he doesn’t want to be with his parents. Typical for his age!”

Folks Video Stories Instagram Profiles

Folks Video Story: An Orchestra For Everyone

In our first Video Story, we visit the world's only classical music ensemble for the mentally ill to see how Bach and Beethoven can help keep depression in check.

Prizewinning conductor Ronald Braunstein had a much-heralded early career in the classical music scene. After graduating from Juilliard, he won the first prize in the Berlin Philharmonic conducting competition—the conductor’s equivalent of winning a Gold Medal at the Olympics. From there, he conducted all over the world, from the Berlin Philharmonic to the Swiss Radio Orchestra.

Eventually, Ronald’s career unraveled due to his bipolar depression. Stigmatized for his mental health issues, he was eventually fired from a high-profile conducting job. But that isn’t the end of Ronald’s story. Embracing his diagnosis, Ronald recentered himself and founded the Me2/Orchestra, the world’s first classical music ensemble for the mentally ill.

In this, our first video Story, Ronald Braunstein let Folks film behind closed doors of a Me2/ rehearsal, while telling us about how he turned his life around after being fired for having bipolar disorder, how music helps him balance his depression, and the ways in which the Me2/ Orchestra has helped him and others realize that having mental health issues is nothing to be ashamed about.

If you like this Folks Video Story and would like to see more, please share it on Twitter or Facebook, and like it on YouTube. And if you’d like to learn more about Ronald Braunstein and the Me2/ Orchestra, you can do so by clicking here.