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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.

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

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!”

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.

Essays

Falling Back In Love With Music After Deafness

40 years after sudden hearing loss seemingly ended my career as a pop music sensation, I finally learned to embrace my deafness, and become a musician again.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf. Music, as the experts now tell us, is essential to brain health. We’ve always known it filled the soul and senses, transporting us through all the years of our life, good years and bad.

But what if, after a life of composing, singing and playing music, you can no longer hear it or hear it clearly as you once did? What happens to the brain, to your heart and soul—and to you—without it?

At age 29 in my left ear, and then again at 31 in my right, I became deaf-with a small “d.” That little “d” also means “hard of hearing,” “hearing impaired,” “hearing challenged,” “adult onset deafened,” “adult late deafened,” and other sobriquets. I wear a hearing aid in one ear and have no hearing in the other.

Losing my hearing when I did was a stroke of unbelievable bad luck. It came in the middle of a highly successful and lucrative music career…

Losing my hearing when I did was a stroke of unbelievable bad luck. It came in the middle of a highly successful and lucrative music career that ended when deafness arrived. Starting in 1973 as a 24-year old, I recorded an album for a small record label (Evolution), watched as two songs made it to the Top 100 on the American pop charts, while unbeknownst to me at that time, another song became a #1 hit in Brazil. I was signed to CBS/Epic Records in 1976, and spent the next few years writing and singing national advertising jingles – including a parade theme for Disney called “I’m Walking Right Down the Middle of Main Street USA” which remains today, a Disney staple.

All that and what might have been came crashing down in 1981. Not only could I suddenly not hear as loudly as I once did, but what hearing I had left came with tonal distortion and the constant drone of low and high-pitched tinnitus.

Hello deafness, my new friend. So, what do I do now? I pondered. More importantly, who am I now? My whole identity–that of a socially gregarious man and a successful composer, singer, musician and recording artist—was wrapped up in my ability to hear, and now my hearing had been compromised. I had no idea what to do, no guides to assist me. But I knew I would have to try to adapt myself to this new life without music, and the identity music had given me.

Sudden deafness is tragic and soul-crushing. The inability to communicate “normally” changed my life from one of confident engagement to a life in the shadows. Deafness hindered my simplest interactions and made day-to-day life a maze of compounding difficulties. And it hampered my desire to communicate with others, especially when they were impatient or indifferent to what I was going through.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf.  Often called the “invisible disability.” I was happy to keep it that way for as long as I could. I would only admit to being deaf when there was is a “failure to communicate” (often on my part) and I could keep it hidden no longer. I took pains to avoid being grouped with the really, really Deaf, with a capital “D.”   Surely, I was not one of them, and anyway, I didn’t need a support group.

But deafness changed who I was. More than just the hearing aid I wore, it changed the way I lived my life. I avoided loud places, turned down lots of invitations to do fun things, and isolated myself by avoiding people who didn’t know of my “affliction.” And when I did get together with people, I became loud and argumentative, talking over others because that way I didn’t have to listen.

As for music? I rarely ever listened to it anymore. I would sometimes sing, but I knew there was no connection between my singing and the correct pitch of a note or phrase. I was resigned to never being a musician again.

I was resigned to never being a musician again.

Yes, I had jobs, relationships, even married. Yet even within those circumstances my discomfort and awkwardness never really left me. Those feelings only really went away when I hid from others, or went on the road for my job, but being alone much of the time eventually brought me to isolation and despair.

Things did not really change until I decided to take a shot-in-the-dark stab at reclaiming my musical life.

It was a conspiracy of different events that inspired me to return to music. In 2008, a writer from the Midwest contacted me after finding my album in a remainders bin in a music store and asked me why I never did another. Intrigued, he did an interview with me and wrote a story for his music blog. That story unearthed fans of 30+ years from around the world that I never knew existed. I vowed then to at very least put my first album onto a CD, but I never believed that making music again was in the cards.

But in 2009, I got my first digital hearing aid which allowed me to hear a much broader range of tones and I realized that I might be able to hear what I needed to hear to get back to music making. In 2010, a fan of many years visited me with a wonderful story as to how he had grown up with my music as a lad in South Africa where his Dad ran radio stations. His encouragement played a significant part in moving me forward. Around the same time, my wife passed away at a young age and her death impressed upon me the need to pursue my passion without delay if I ever hoped to give music a try again.

Things did not really change until I decided to take a shot-in-the-dark stab at reclaiming my musical life.

Lots had changed since I had first become deaf. An auditory trainer brought me up to date on new brain research that indicated that even the small amount of residual hearing I had left might give me enough of a thread to improve my speech comprehension. That would not only help me with my isolation by allowing me to spend more time with others… it had the tantalizing possibility of improving my musical hearing through listening exercises.

Meanwhile, I discovered that hearing aid technology had expanded beyond speech, and now allowed me to hear musical tones I hadn’t heard for years. Galvanized, I worked with a vocal coach to recover my voice, and work breathing techniques and vocal stamina. Phonak, my hearing aid company, not only helped me to launch a Kickstarter campaign to return to music, but also enlisted me to write articles for their blog, Hearing Like Me, about my life with hearing loss. Over the next three years, I wrote more than 35 blog articles and responded to questions and comments not only about music and hearing loss, but also about how to negotiate a life with serious hearing challenges.

This was the “Aha” moment that I believe ultimately saved my life.  For most of my adult life, my hearing loss seemed like a meaningless personal tragedy. I was never able to compensate for it professionally, or to find peace with my new identity as a deaf person. But now that I was connecting to others about my experience through writing, I suddenly found myself coming to peace with who I now was, and the strength to start rebuilding my life in earnest. I now had an international audience of people like me who had endured many of the same things that I had and with whom I could communicate and perhaps even inspire. After years of trying to avoid fellow deaf people, I had finally managed to connect to them… and in so doing, found my place in the world again.

Eventually, I attended my first ever hearing loss community meeting and joined the Association of Adult Musicians with Hearing Loss (AAMHL). I was mortified to learn what I had been missing all these years: peers and new friends who coaxed me out of the shadows, and helped me see that there was more to life after hearing loss.

After years of trying to avoid fellow deaf people, I had finally managed to connect to them… and in so doing, found my place in the world again.

Moving beyond my own deafness reinforced my desire to return to music. While my audiogram has not changed in more than 40 years, I now see that it reveals more than just the defects in my hearing; it also allows me to see what hearing still remains, and target it with new compositions. After two years of training and endless practice, I have returned to performing live. These performances aren’t perfect, of course, but I simply call them “works in progress.” I have even gone back into the studio to record new music, and I’m now planning a busy year including a trip to Brazil to perform for fans who made one of my original compositions a #1 song there in 1974.

Stu Nunnery today, performing in St. Louis.

I could never have imagined that my hearing loss and the tragic narrative that grew out of it would become my redemption; that in rebuilding my connections to music and to my community of peers, I would rediscover joy and my sense of self. I may never regain my hearing, but by finally embracing my abilities in whatever forms they might take, I have finally found peace.

Beethoven is reputed to have said that “playing a wrong note is nothing – but playing without passion is unforgivable.” And famed trumpeter Miles Davis once said that “if you play a wrong note, continue – It’s the next note that counts.”

Whatever your challenges, find the notes to your own song and sing them with passion. They’re perfect just the way you make them.

Essays

My Long-Leggity Beastie, Anxiety

A helpful therapist and a high-school spelling bee taught me to finally confront the monster that was haunting my life.

As a junior in high school, I qualified for the regional spelling bee. The contest was going to be held at a nearby high school which I had never visited. My parents, who both had work obligations that afternoon, explained to me where the high school was located. Having only recently got my driver’s license, I assured them that I would be fine on my own.

But on the day of the contest, I was nervous. My heart was beating fast as I fired up my ancient station wagon and joined the stream of traffic heading down the parkway. Unsure of my route, my eyes darted around looking for street signs. Finally, I saw a sign that read “High School” and quickly turned down the residential street, relieved to have found my destination.

But when I inquired at the front office about the spelling bee, the secretary seemed confused. She got on the phone and made one call, then another. She shook her head. Hanging up the phone, she gave me the bad news.

I had come to the wrong school.

Heart pounding, I hopped back in my car. I drove to the correct high school in a blur, and ran into the auditorium, only to arrive as the last word was being read aloud.

I stood there, frozen, with tears streaming down my face as I realized I had missed my chance. As the audience cheered and clapped for the spellers, I broke into sobs, and hurried back to my car where I could cry in private.

I felt devastated about missing the spelling bee, although to family and friends, I laughed the whole thing off, turning it into a story about my poor sense of direction. Privately, I ruminated about how upset the whole thing had made me.

Up until then, I had been undecided about what to do after graduating high school: go to art school, to fulfill a lifelong dream of studying design? Or pursue a traditional liberal arts education, where I could indulge my love of reading and writing?

Now, I thought, I had uncovered a truth about myself that I couldn’t ignore. I concluded I was so upset because I cared about words and language so much. In my mind, this meant I needed to follow my deeper passion.

So I gave up on art school and focused on English. I looked for the words that would make this story about myself true.

But the truth I uncovered that day was actually something completely different, although I didn’t realize it at first. This was a narrative shaped, not by my passions, but by the anxiety that has been running like a dark undercurrent throughout my life.

It was not until many years later, when seated on my therapist’s couch, that I saw it for what it was, and truly understood how I had been carried along by this current of anxiety for most of my life.

The therapy session was about something completely unrelated. But in discussing how I had reacted to a certain situation, my therapist made an observation that shook me to my core.

I mentioned something about anxiety being an influence on my reaction, and she smiled, her eyes fixed to mine. “Honey,” she said with a kind smile, “anxiety has been the single most powerful driving force in your life.”

“Honey,” she said with a kind smile, “anxiety has been the single most powerful driving force in your life.”

The conversation shifted after that, and I barely remember what was said next. When our session was over, I responded mechanically to her warm and loving hug, and raced out of her office, my mind buzzing.

The single most powerful driving force in my life? What about my intellect, my curiosity, my passions? My hands were shaking as I fumbled in my bag for my car keys and made the short drive back to work. I wasn’t ready to let this information in. If I tugged on the thread my therapist had just pointed out to me, what would it unravel? So I tucked it away and tried not to think about it.

Anxiety, like other mental disorders, is an imaginative and skillful liar. One of the greatest tricks it plays is its ability to hide in plain sight, to camouflage itself as something benign. For so many years, my anxiety was the snarling wolf waiting in disguise, while all I could do was wonder: “What long teeth you have!”

As a child, my anxiety hid among an array of typical childhood fears, like the alien hiding among Gertie’s stuffed animals in the movie E.T.. Hanging on the wall in my grandmother’s sewing room was a needlepoint sampler of the old prayer, “From ghoulies and ghosties and long-leggity beasties, and things that go bump in the night, good Lord, deliver us,” complete with an image of a green, dragon-like beastie. I was terrified of that sampler; terrified of the idea of “things that go bump in the night,” terrified of E.T., or any sinister creature from any movie or TV show I ever watched. I sat in terror through the movie Gremlins as a child while my family laughed at its campy horror, then I lay awake for hours imagining that the long-limbed creatures from the film were going to crawl up from under my bed and devour me.

In high school, my anxiety was free-floating and sporadic, but it hid so well there too. My friends and I would commiserate about being “so stressed” or “totally freaking out” over endless late-night cups of coffee at Denny’s, as we attempted to juggle pre-calculus homework, play practice and debate tournaments. In college, everyone complained about having “so much work,” yet it seemed like a point of pride for each of us to be the busiest, the most burdened, the most stressed.

What I didn’t say to anyone at college was that when I was “so stressed” about my homework, I locked myself in my room and stayed awake for 24 hours until I had all my assignments done. I didn’t mention that when I had been “freaking out” the day before, I had been sitting under my desk crying uncontrollably for an hour, and I didn’t even really know why. These weren’t the stories I wanted to tell about myself.

Anxiety shouts, it screams, it will do anything to get your attention, and it can be hard to ignore.

Our brains love stories so much that they will make them up, stringing together unrelated events to construct a narrative where none exists. For a long time, it seemed my brain loved only the stories that flattered it; the stories that fit my idea of the person I thought I was.

And my brain is very, very good at telling stories. Stories were at once the shield for my anxiety to hide behind and also its most fearsome weapon. Anxiety has told me that something terrible is about to happen so many times that you would think I would have known it was crying wolf. Somewhere inside me, there was always a small voice saying, “This isn’t right.” But it got drowned out so easily. Anxiety shouts, it screams, it will do anything to get your attention, and it can be hard to ignore.

Accepting my therapist’s statement about the impact of anxiety on my life has meant re-writing my entire story. Looking back over my life with this newfound knowledge has been like opening up a beloved book, only to find that the characters are unfamiliar, the storyline changed, like my own private Mandela Effect.

But her statement also gave me permission to keep listening to that small voice inside me — to hear what stories it can tell. And I have learned that it is wise, and kind, and true — all the things my anxiety is not.

Anxiety pretends to be a soothsayer, reading signs and portents in everyday objects. It is why I laugh when people tell me to “trust my gut” or “use your instincts,” because anxiety rules these parts of me, and it is not to be trusted.

I laugh when people tell me to “trust my gut” or “use your instincts,” because anxiety rules these parts of me, and it is not to be trusted.

Anxiety is what tells me that someone has broken into my house and murdered my loved ones. It tells me that the shape on the side of the road is going to be a dead body. It tells me that ghoulies, and ghosties, and long-leggity beasties lurk in the shadows.

It’s so easy for everything to get drowned out by the nonstop gibbering of these fantastical yarns. But I am learning how to tune out the noise, like voices in a busy restaurant, and listen instead to what this new, small voice has to say.

It’s not always that simple or that easy. Sometimes the lies of anxiety are too cunning, sometimes its voice can’t be drowned out. Sometimes the threat of the wolf at the door feels much too real. But I am learning, after all these years, to tell the difference between fact and fiction, and to choose very carefully which stories I hear.

Essays

Not Your Average Stay-At-Home Dad

Born with one arm, my husband faced a lifetime of workplace prejudice, until he finally found the perfect job: raising our son.

One sultry night in Cuba, I met the man who would become my husband. But I must have had a couple of cocktails that first night talking to him, because it wasn’t until the next day that I realized he only had one arm.

Taking furtive glances at Justin’s arm, which ends just after the elbow joint, I felt awkward: had I missed the window where it would be okay to ask what happened? What was the etiquette here? But thankfully, he spared me any awkwardness by launching into it himself, explaining how it got chewed off during a fight with an alligator. Later, he admitted that he’d been lying: it was lopped off in a gruesome helicopter accident. And later that night, he retconned the accident yet again, explaining it had happened during a particularly vicious knife fight in a Havana nightclub.

Outside of his rugged Canadian good looks (he made me write that!), that silly sense of humor is what attracted me to Justin from the get-go, and has helped sustain us through our marriage. His ability to laugh despite the odds helped to smooth out the edges of early marriage when life kept throwing obstacles at us, the most notable and the hardest to traverse being his employment status.

It didn’t matter if he was fully qualified, or passed the proper training courses before applying; hiring managers would take just one look at his stub, and decide he couldn’t do a job.

Despite his competence, my husband has had difficulty finding work. It didn’t matter if he was fully qualified, or passed the proper training courses before applying; hiring managers would take just one look at his stub, and decide he couldn’t do a job. In one particularly horrible experience, a job offer made to him when he was wearing a thick jacket was retracted the next day when he came to sign paperwork wearing only short sleeves.

Justin swimming with our son.

Whenever we faced prejudice like this, we wondered if we could perhaps complain, report someone, get some justice. But there was never any explicit proof, leaving us feeling gaslighted, and doubting ourselves about whether Justin had done something wrong. Not only was it hard on our marriage, it was hard on my husband: being rejected over and over again damaged Justin’s self-esteem, and made it harder for him to see his self-worth… even though he’d been living with this sort of prejudice for some time.

Officially diagnosed with congenital amputation, an alligator didn’t really take my husband’s arm, but a quirk of nature, played out before even took his first breath. When he emerged as a one-month premature, 4 pound, 11 ounce baby, he also surprised everyone in the delivery room by only having one arm. As he grew, he tried a number of prosthetic arms designed with different purposes in mind, but Justin always preferred to figure out how to get by with the limbs he’d been given.

And that’s something he’s remarkably good at. After 11 years of marriage and over 14 years since that night on the beach in Cuba, I haven’t witnessed many things that my husband can’t do. He drives, he fishes, he swims, he kayaks…. and, with the addition of our son four years ago, I even discovered he could change dirty diapers.

But his abilities were not what recruiters saw at all. Instead of seeing him as more competent and resourceful because of all he could do with one arm, they deemed him unsuitable for his lack of limb. Consequently, he spent many years lurching from one temporary low paying job to the next.

Instead of seeing him as more competent and resourceful because of all he could do with one arm, they deemed him unsuitable for his lack of limb.

So after our son was born and my writing career blossomed we faced a choice. We could put our son in daycare while Justin tried to find yet another directionless gig, or we could make a change and set him up with a new employer who didn’t care how many arms he had: our son.

Making the choice to become a stay at home dad was relatively easy for Justin. Looking after children is difficult for any full-time parent, but for Justin, the benefits were better than any other job he’d ever had. For my husband, there couldn’t be a better job than spending all day with his son. Sure, he’s not exactly the typical stay-at-home parent: you can’t exactly see him making his own Play-Doh, or attending “Mommy and Me” classes. But if his life has proven anything, Justin could make this role work.

Now, when I’m working, I’ll sometimes be interrupted by excited screams echoing through the house, as the boys fend off an alien attack every bit as vividly imagined as the crocodile attacks and helicopter accidents Justin joked with me about our first weekend together. Or I’ll come down during a break from work, and see a house that looks like fifty kids ran wild through it. And I smile, knowing that my husband has finally found a job he loves.

Sometimes, when I’m working at a coffee shop, he’ll send me a quick text, joking he’s in survival mode. He’ll say: “Our son has a hard head like me, so we’re having a tough day, today.” But we feel lucky, because at least those tough days don’t include being underestimated just because of the body he lives in.

Our son, Justin’s client/boss, knows Daddy has one arm, but he doesn’t see it as a negative. He’ll stick a hand inside his shirt and say, ‘Look, I have one arm, just like Daddy.’ It’s clear from the way he looks at him that he thinks Justin is doing a great job, and so do I.

Essays

The Happy Little Life Club

The last lesson my mom taught me before she died of stomach cancer was the secret to living life to its fullest.

“How am I going to raise my kids without you?” I asked clenching my hands tightly in my lap. “They’re still babies. I need you. You’re not done yet.”

I shifted in the plastic-backed wooden chair and looked around the kitchen, as if taking it in for the first time, or, perhaps, the last. The mirrored ceiling fan above our heads spun in circles, calm and steady, just like it did for countless meals growing up.

It was hard to look at her; she was different. She smiled at me in a way I’d never seen before.

“You will be fine,” she said. “You’re a good mom.”

She was serene and at peace with her decision, but we were not. She’d already moved on, but we hadn’t.

It was mid-November 2014 and her four grandchildren were playing with their great-aunt, two rooms away. In the kitchen, we could hear their giggles and gleeful screams, along with the popping sound of a push toy and a Disney movie playing in the background. My mother would usually never miss an opportunity to spend time with her grandchildren, but nothing about what we were going through now was usual.

She was serene and at peace with her decision, but we were not. She’d already moved on, but we hadn’t.

The air in the house was heavy this time. Heavy in a way it had never been before. Even during the three previous times where she’d faced cancer, there was hope. This time, all there was was dread, thick and looming.

Yet through all of this, my mother sat across from us, completely content. The morphine had begun to take effect, easing her of the unbearable pain of Stage IV stomach cancer. This time, we all knew, death was going to win, but only my mom seemed at peace with this. Perhaps she felt some peace with the fact that she had chosen to leave on her own terms, by coming home and saying goodbye to friends and family. But part of me wondered if the morphine had transformed her personality.

Clockwise from top-left: my sister, me, and my Dad, saying our final goodbyes to my Mom in November 2014.

A pessimist by nature, my mother was not usually the serene, peaceful woman she was now. As her brother said, she was normally staid. Ask anyone who knew her how she’d face her death, and they’d tell you the same thing:  Yes, she’d have emotions, but not these. She’d be angry. She’d be sad. She’d be jealous of those who were able to watch her grandchildren grow. She wouldn’t smile. She wouldn’t be at peace.

All sitting together at the table, my mom faced me, my sister, and my dad, saying her goodbyes while she was still lucid. I was directly across from her, and her stillness, her peace and her sense of calm as she said goodbye to the three of us flooded me with emotions.

Her stillness, her peace and her sense of calm as she said goodbye to the three of us flooded me with emotions.

She never sat still like this, ever. She was a doer, always a doer. She’d clean the baseboards while we spoke on the phone. She weeded her grass by hand. Weekly. She purchased and planted flowers at her synagogue. She took long walks and bike rides; she exercised daily in front of the TV. She didn’t take the time to sit and enjoy the calm peacefulness of a warm spring morning, dew still on the grass, birds singing and the sun warming the earth. She was moving. Keeping busy at all times. There was always something for her to do.

But now, facing death, she was stiller than I’d ever seen her. And I didn’t know what to think about it. Mom seemed to have no regrets about ending her life, even though she was leaving so much behind.

A few months before, a little over one year into what would be a contentious three-year divorce, I’d taken my children to visit family friends at their beach house. One night, after the children had gone to bed, I asked what my friend’s network name “hllc” stood for.

“It stands for happy little life club,” he told me. He’d taken up that motto after his divorce. It was how he chose to live his life. That was nice, I thought, but definitely not my life. Yet that phrase stuck with me for some reason, never too far from my mind.

As I sat observing my mom watch her family tearfully tell her goodbye, “happy little life” re-entered my mind. Is that what she had, I wondered? Even though she was leaving so soon, abandoning the life she worked so hard to create? Was she really happy? Was she really content leaving her life? Her own “happy little life” that was still in progress?

We each took turns telling my mom how we felt about her, what we’d miss, how sorry we were that this was happening to her. Our eyes were wet, but not hers. The only thing she gave back were smiles and small words of comfort.

The next few weeks would be challenging. Death refused to take my Mom quickly. As we waited for her to pass, I found myself thinking back, over and over again, to our final conversation. The peace from which she spoke—her acceptance of death—impacted me in a way I couldn’t quite understand, but kept coming back to.

In the three years since my mother died, I think I have finally come to understand what my mom communicated to me that day. When we sat down together at that table, my life was full of stress and sadness, but since then, I’ve divorced, returned to my writing career, and worked hard to create a life that I was proud of; a life I could accept leaving with nothing left undone or unsaid at the end of the day.  I’ve challenged myself to do things that bring me joy, knowing that life could end at any moment.

So today, my mother’s final serenity make sense to me. The woman who had moved through life as if it were a to-do list of tasks had finally checked off every last one, and was free to rest. The woman who never sat still finally did.

That woman, my mother, had her happy little life, just in her own way.

And now, I know she was trying to tell me, it was time to make mine.

Q&As The Good Fight

The Dog Walker Who Beat HIV

Otherwise known as the Berlin Patient, Timothy Brown is the only known person to have been cured of HIV/AIDS. But he won't rest until a cure is found for everyone.

There are around 36.7 million people in the world living with HIV/AIDS. Since it appeared in 1981, 35 million have died from complications associated with the deadly autoimmune disorder, and another million or so are expected to be infected by year’s end. Countless fortunes have been spent on concocting a cure which has not materialized. There is one person, though, who has beaten HIV for good, a 51-year-old professional dog walker in Palm Springs named Timothy Brown. Between 2007, when a bone marrow transplant in Germany rid him of the virus, and 2010, Brown was known simply as the Berlin Patient. For reasons pertaining to his health, he had chosen to conceal his identity for nearly three years. Brown, who had lived in Europe for two decades working odd jobs, decided to reveal himself to the world after relocating to San Francisco. Back stateside, he had to adjust not only to life back home but to his new role as humanity’s sole HIV miracle.

Timothy Brown, also known as the Berlin Patient, is the only person known to have ever been cured of HIV.

At first, attention was intense. Brown’s email inbox overflowed with messages, many of them from HIV patients hoping to hear how he did it. He tries to respond to as many as he can but he cannot reach them all; currently he has around 100,000 unread emails. Since Brown’s transplant under a doctor named Gero Hütter, dozens have tried to replicate the procedure but none have found lasting success. Brown has been poked and prodded by countless researchers; his blood stored in labs across the globe, but how exactly his transplant cleared him of HIV remains pretty much a mystery.

Brown has become a leading advocate and spokesperson for the cause of finding a cure. When not walking dogs, exercising, or doing yoga in Palm Springs, where he recently moved, he attends HIV/AIDS conferences around the globe, often as a keynote speaker. In July, he will be bearing a torch for HIV survivors during the 22nd International AIDS Conference in Amsterdam. His existence gives hope to patients and researchers alike; he proves the possibility of a cure. We reached out to Brown to hear more about him and his advocacy work.

You are known famously as the Berlin Patient. But you’re from Seattle. What brought you to Germany in the first place?

I had taken a post-graduation Eurorail trip with two female friends in 1990. We started in London and went all over western Europe. I was gone for three months. When I got back to the US, at 24, I started working in banks. I grew bored with that so I quit and took on temp jobs. I didn’t know what the hell I was doing. I decided I’d move to Europe and picked Barcelona, which had been my favorite place I visited. In April 1991 I moved and stayed there awhile. At one point I lost my apartment in Barcelona and this guy I was seeing asked if I wanted to live with him in Berlin. I hitchhiked there. I worked for the British military as a translator then at a cafe near Checkpoint Charlie.

When did you find out you had HIV?

June of 1985. I had been going out with this guy for six months when he told me that he tested positive for it. He said that I should get tested; he was concerned about my health, though not really for his own. The doctor said my CD4 count was pretty low at that point, about 250, low enough to think that I had had HIV for a long time. She thought I should start treatment immediately. The next year, 1996, Protease inhibitor, an antiretroviral drug, came out and I started taking that. It made people who looked on the edge of death get better; it was like you got a new lease on life. Eventually, I was switched to a combination of three drugs and then was able to kind of forget that I had HIV. It just became, Okay I have it but I’m doing fine and feel healthy.

What made you take the step from being contently HIV+ to getting your fateful bone marrow transplant?

In 2006, I took a trip to New York to attend a wedding. The whole time I was very tired and didn’t know why. I thought it was jet lag but it continued back in Berlin. I saw a doctor and eventually, it was determined I had leukemia. I didn’t want to go to a hospital where there’d be a lot of stigma so he sent me to a university hospital in Berlin. I thought I’d do a round of chemo and the whole thing would be over. I’d be cured. But after the second round Dr. Hütter said he wanted to send my blood to a bone marrow stem cell blood bank to see if it had matches for my tissue type. It was just in case the chemo wasn’t effective, something to fall back on.

It ended up that there were way more matches for my blood then most people get–230 possible matches. That gave him the idea to look for a donor who was immune to HIV.

It ended up that there were way more matches for my blood then most people get–230 possible matches. That gave him the idea to look for a donor who was immune to HIV. He explained that 1% of northern Europeans have a gene mutation which makes them immune. Both parents have to have the mutation for the child to get it. Out of my 230 matches they hoped to find that donor. Eventually, they did.

I had the transplant in February 2007. The doctor’s theory was that if I got this transplant I would also become immune to HIV. I quit taking my HIV meds the day of the surgery. After it, I noticed physical effects. With HIV, I wasn’t able to gain muscle mass. But I was going to the gym every day and suddenly gaining muscle. I felt better. I was able to return to work. At first, after I stopped taking medication the virus went way, way up but then went down to undetectable levels. That took about three months.

You kept your identity a secret until 2010. Why?

My health, basically. I had to do a second transplant because the leukemia came back. I didn’t do so well after that one. My health was horrible. I had quit working before the second transplant. Then after the surgery, I had an episode of extreme delirium–mumbling and so on–and went back to the hospital where it was determined I should get a brain biopsy. Of course, they were worried that they’d find HIV or leukemia in my brain. They didn’t find either. However, the surgeons left an air-bubble in my brain. They did an emergency surgery and removed it. But having that there for several hours has screwed up my balance to this day. I walk like I’m drunk.

So the reason you decided to remain anonymous is because you were recovering?

Yeah.

Why then did you move back to the US?

Because I would either have had to go live temporarily in a home or find someone to take care of me at my home. I was basically bedridden, incontinent. I was in horrible shape. Through physical therapy, I was able to walk again. Then on Halloween of 2009 in Berlin I was out very late and got mugged, probably because I looked like an easy target. I was hit over the head and had my wallet stolen. I fell onto my left shoulder and hit my head on the ground. I got a concussion. It was kind of like having a stroke. I lost my ability to enunciate and had to do speech therapy.

That was a rough patch of years for you.

Yeah it was. But I’m on the other side of it and doing very well.

What has your advocacy work been like since returning to America?

My case is very important because it has proven that curing HIV is possible

My case is very important because it has proven that curing HIV is possible. I tell people that I don’t recommend curing HIV the way I did. It’s hard, expensive,and dangerous. It has been tried a few times but no one’s made it yet. And doing a stem cell bone marrow transplant is not something that can be done just for HIV because HIV treatment now is so good, it wouldn’t be ethical to do one on somebody.

Given how well managed HIV is today through antiretroviral drugs, do you think people are complacent about finding a cure?

Yes. I talked about that in a recent article I wrote. For HIV+ patients, a cure would mean they’d have to give up their benefits. Moreover, they’re doing fine on the medication so why do something that might kill them.

Do you sympathize with that view?

I do. But it’s disappointing. I was very disappointed after an HIV conference I went to recently in Seattle. It was something like 60% of the attendees who said that they really didn’t want a cure.

Brown credits a bone marrow transplant which gave him a rare gene for HIV immunity for his cure.

That’s surprising.

From a public health perspective, it is very important to find a cure. It’s way too expensive for governments and insurance companies to pay for HIV medication in the long term. It can really bankrupt smaller poorer countries. South Africa is a good example. At least twelve percent of the population is HIV+. That’s huge expenses. Not to mention the lives that are wasted.

How do you see your role as a public figure?

I won’t give up until a cure is found for everyone.

For people with HIV and their loved ones, I think I give them hope. I’m told by many, many researchers that I’ve inspired them.

No one has settled the debate yet over how you were cured. But how do you think you were?

I think the reason I’m cured is because I don’t have the CCR5 protein, which is absent from my body. I think that’s the main reason but there is still debate about that.

Are you hopeful that a cure will be developed in your lifetime?

Yes. I won’t give up until a cure is found for everyone. I have survivor’s guilt to a huge a degree. I’m the only person that’s been cured of it. I’m not a scientist but I do what I can to make sure the research goes on. I couldn’t sleep at night if I didn’t.

Profiles

No Breath To Spare

Jane Nelson's chronic breathing disorders might have required a dual lung transplant, but it hasn't stopped her from living her life.

When Jane Nelson, 30, dates, she can’t meet for sushi. Girls’ nights out no longer entail a bottle of red in a cozy Manhattan wine bar. And – a blessing and a curse – Nelson’s days of navigating New York City’s teeming subway system are over.

A culinary school grad who works in the wine industry, Nelson – the picture of health as a kid – never dreamed a nagging, dry cough would lead to months spent homebound tethered to an oxygen tank, and then a double lung transplant. Now, two years after taking an emergency flight to get her new, donated lungs, Nelson is still figuring out how to navigate one of the world’s largest cities as an immune-compromised woman who wants to date, socialize and move up in her career.

“I’m at that age when everyone’s getting married around me, they’re having babies and they’re buying a house,” Nelson said from her home office in midtown Manhattan. “The biggest part of my life is taking care of my lungs. You feel derailed.”

It’s a feeling Nelson acknowledges, but she doesn’t let it consume her. She won’t feel sorry for herself. Not when she forgoes a movie night at her sister’s in Brooklyn because she can’t spend $60 for cab fare there and back. Not when she feels awkward explaining to acquaintances she can’t shake their hand. And not when she passes a deli craving a crisp apple or thick pastrami sandwich. She won’t touch fresh fruit and veggies and cold cuts; they’re ideal hosts for bacteria and can easily get her sick.

“I never really had the sense of, this is so unfair, why me,” said Nelson, who graduated from the Culinary Institute of America at Greystone in Napa in the midst of her health journey. “I’m lucky my mind didn’t go there. My mind immediately went to, what do I do now, how do I minimize the effect of all this on my normalcy?”

“My mind immediately went to, what do I do now, how do I minimize the effect of all this on my normalcy?’

Nelson, who’s always had a passion for cooking, planned to work in the food industry in California after graduation. But then her lungs gave out and she moved back to New York to be closer to family. Accepting their help throughout her surreal journey didn’t come easy. As the fiercely independent middle child in a family of five, she struggled with admitting she needed support. But without it, she said, she wouldn’t be here today.

It was 2011 when Nelson took the train home to upstate New York for Christmas with a chronic cough. At the time, she was working in finance in Manhattan. She spent hours in her parents’ kitchen making a cheesecake, mixing cocktails and coughing. Her parents and siblings were concerned, but her doctor said it was likely allergy-induced asthma.

Back in the city, Nelson started noticing she was out of breath when running. Then, in February, her left lung collapsed. A biopsy revealed no clear cause. Doctors said sometimes lungs collapse in tall, lanky people. They operated on her, attaching the top of her lung to her chest wall, and then sent her on her way.

“I remember asking, ‘Do I need to change anything about my lifestyle?’ and they said ‘No, go on living your life.” So five months later, Nelson picked up and moved to California to pursue her culinary school dreams.

Four months after her move, Nelson was carrying a sheet tray with 20 pounds of Boston butt across the culinary school kitchen when she felt a crackling in her chest. She made her way to urgent care to find out her other lung had collapsed. They performed the same surgery to reattach her lung. This time, they found the cause.

Nelson on stage at a conference for the Pulmonary Fibrosis Foundation.

“I was coming out of sedation, and the pulmonologist was standing over me. He said, ‘You have something very serious. You have interstitial lung disease.’”

Nelson’s condition is actually a group of lung diseases that cause progressive damage to lung tissue. In many cases, exposure to toxins like asbestos or coal acts as a trigger. Nelson had neither. After diagnosis, life expectancy is three to five years.

Lying there in recovery, Nelson was silent. She stared up at the doctor. “He went on, and he said, ‘The last time I saw someone with a case this serious, it ended up with a lung transplant.’”

Over the next several months, Nelson continued to deteriorate. It was hard to breathe. But she was determined to graduate. She booked doctor appointments with specialists in San Francisco in the mornings, then drove back to Napa for school in the afternoons and evenings. “Missing class was not an option,” she said.

Four months after graduation, she flew home. “I was trying to face it all myself, but then I recognized I needed support,” Nelson said. “It’s okay to need help.” Her lungs were so weak she couldn’t fly without an oxygen concentrator, which helped her breathe. On the flight, the machine prompted fellow passengers to stare. Her heart raced. What if the machine’s battery died?

“It’s okay to need help.”

In New York, she found a job at a wine company and saw a new doctor. Her lungs got worse. “Everyday activities were getting harder and harder,” she said. “Different pieces of my life were being stripped away.” A year after moving back to New York, Nelson needed extra oxygen while exercising and sleeping. Her sister and brother-in-law pushed her to go to the gym with them; exercising would help her lungs.

Soon, she needed oxygen 24-7 and was tethered to a machine the size of a mini-fridge by a 50-foot tube. “I never left the house,” she said. She was using so much oxygen she couldn’t cook; turning on her gas stove would have been dangerous. By this point, Nelson was on a list for a double lung transplant at Columbia University, but her chances didn’t look good. She was running out of time; her doctor suggested she try another facility. She chose Duke University.

After her transplant, Nelson is happy and healthy.

The December morning Nelson, her mother and sister planned to drive to Duke to get Nelson tested and added to their transplant list, she couldn’t breathe. Her left lung had collapsed, again. An emergency flight took her to Duke, which added her to their transplant list on Christmas Eve 2015. Two weeks later, she had two new lungs.

It’s been two years since her surgery, and Nelson no longer needs oxygen. She was promoted and she’s dating again. She’s stopped worrying about potential suitors’ reactions to her condition. She hopes to get married. Having children is another matter.

She doesn’t want to pass the disease on, though it’s unclear whether it’s genetic. She’s also nervous her health could falter again, leaving a child motherless. “That’s something that gnaws at me,” she said.

Since her surgery, she’s organized events to raise money for the Pulmonary Fibrosis Foundation (PF is a type of interstitial lung disease), has spoken about the shortage of organ donors—New York has the third lowest organ donor rate in the country—and is writing a memoir. She’s taken vacations to Paris and Nashville, and she applied to get her MFA. She’s stayed in New York to be close to her family. “I want to get everything out of life that I can,” Nelson said. Her disease took her lungs, but it’s not stopping her from living.

Profiles

How Fibromyalgia Helped This Mama Bear Protect Her Son

Being diagnosed her own invisible condition helped Lindsday Turpen better advocate for her son, Riley, while also making her better at advocating for herself.

Anyone following a typical evening of single mom and full-time student Lindsay Turpen probably wouldn’t see anything out of the ordinary. You’d find 36-year-old Lindsay, who is finishing up a bachelor’s degree at Indiana University in Bloomington, balancing the homework, meals, and housework of her and her son, Riley. Like most twelve-year-olds, Riley is usually more interested in extracurriculars (in his case, Harry Potter Legos) than his math assignments.

Without knowing that Riley was diagnosed with ADHD and autism spectrum disorder (ASD), you might not suspect that the blanket and headphones he immediately drops over his ears when he gets home are a means of recovering from the overstimulation of school. Nor would you guess that when Lindsay plops down beside him on the couch and starts browsing Facebook on her phone, she’s not just recharging from the typical expectations of a mom and student, but also from the added strain of fibromyalgia and chronic fatigue syndrome (FM/CFS).

The fact that both Riley and Lindsay’s conditions aren’t always obvious to an outsider can make it difficult for Lindsay to advocate for her family. This difficulty runs all the way back to Riley’s infancy, when Lindsay had a hard time finding health care providers who believed there was anything there to diagnose.

Before he turned one, Lindsay saw signs that something was off. After learning a couple of words at seven or eight months, Riley stopped speaking completely for months. Then at two, he stopped eating and had inconsolable sobbing fits that would last for hours. “He didn’t want us to touch him, but he didn’t want us to leave,” Lindsay explains.

For years, pediatricians and therapists believed that the unusual behaviors Riley exhibited were simply due to stress. Riley’s dad moved out when he was three and was deployed overseas by the National Guard when Riley was five. At six, the reintegration of Riley’s father into his life caused a new set of issues.

Doctors believed that Riley’s behavioral issues were situational, and if Lindsay were able to normalize Riley’s home life — once his dad returned from deployment or once they had established a regular visitation schedule — that Riley’s issues would resolve themselves.

“It got to a point where it was like, this is not just stress. There’s something else going on here,” Lindsay remembers thinking. “I had this gut feeling there was more to it, I just couldn’t put my finger on it.”

“It got to a point where it was like, this is not just stress… I had this gut feeling there was more to it, I just couldn’t put my finger on it.”

However, she didn’t suspect Riley was on the spectrum because he was an extremely social kid. What Lindsay understood about autism, she learned from relating to a cousin with Asperger’s — a disorder characterized by difficulties in social interactions. In comparison, Riley didn’t display the abnormal social cues, such as poor eye contact, that Lindsay knew to look for.

When arose at school at age six, Lindsay took Riley to a child behavioral therapist, who in turn recommended a child psychiatrist.  Right around his seventh birthday, the psychiatrist placed him on the spectrum. Autism spectrum disorder is a group of developmental disorders that covers a wide “spectrum” of symptoms, skills, and disability levels. People diagnosed with a disorder within the group may be more or less debilitated by their condition; it may also be more or less noticeable to others.

“He’s on a part of the spectrum where he doesn’t have the severe needs that would be obvious to other people,” Lindsay explains. “Riley lives in this gray area where he needs more handholding, more accommodations, more of a learning curve than a typical child his age, but he’s not so developmentally delayed that he qualifies for a lot of the more in-depth services or anything that seems obvious to other people.”

This gray area means Riley doesn’t always get the help he needs. In Indiana, an official medical diagnosis does not automatically qualify a child for social services. The public school system conducts their own assessment and, in Riley’s case, they decided he didn’t qualify for additional services.

“Anytime he was having behavioral issues, they just punished him rather than working with us. We got to the point where they were threatening to suspend or expel him from the public school here because, according to their assessment, he was not autistic.”

Lindsay faced similar disbelief from specialists about her own condition, which started out as a minor ache in her left shoulder in early 2014. The pain spread through her shoulders and down her arms until she felt a general achiness throughout her body. She started having trouble lifting her arms and lost her usual reserve of energy, getting more and more behind in classwork. For months, she sought help, but couldn’t find a health care provider who believed her.

“The first three doctors I went to about this just told me to try harder to lose weight,” Lindsay recalls. “I even had an endocrinologist refuse to see me. He was in the same practice group as one of the other doctors I had seen. When they went to transfer the records, I guess there was some conversation, and he was like, ‘Oh I’m not taking a patient like that. Just tell her to lose weight.’”

While Lindsay was overweight, she knew her symptoms were pointing to something much more complex than just her body mass index. It was through advocating for her son that Lindsay learned how to advocate for herself.

“Before I had Riley, I tended to just ‘go along’ with whatever I was told by medical professionals. Once I had Riley to advocate for, that ‘momma bear’ instinct kicked in. I began to understand what it meant to trust my gut instinct when a diagnosis or suggested treatment didn’t feel right. After years of advocating for Riley, it seemed second nature to me to seek out different opinions or resources when something wasn’t working for me or when a doctor blew me off.”

“Before I had Riley, I tended to just ‘go along’ with whatever I was told by medical professionals. Once I had Riley to advocate for, that ‘momma bear’ instinct kicked in.”

Eventually Lindsay found a physician who believed there was something wrong and, after a series of MRIs and blood tests, Lindsay was diagnosed with FM/CFS.

Although being a single mom with chronic pain and fatigue is difficult, Lindsay has found an unexpected benefit to it: a new way to relate to her son.

When Lindsay first started exhibiting signs of her condition, the worst part for her was the brain fog. She lost much of her attention span and short-term memory. She started carrying around a notebook, even when moving around the house, because she couldn’t remember what she was doing.

“That’s when it started to dawn on me how difficult it must be to have a different kind of brain,” she explains. “And I thought, ‘Oh my God this must be what Riley’s life is like.’”

The more she forgot to do things like read assignments for class, fill prescriptions, or call teachers, the more she empathized with her son’s inability to stay on track or to understand what someone is expecting of him.

Riley and dinosaur pal on a recent flight to Denver.

“You start living in this place where it’s like, what am I forgetting? And what’s the next thing that’s going to be bad or wrong or that I’ll get in trouble for?” she says. “I related to that as Riley walking around never knowing when he was going to be in trouble again because he couldn’t remember to do something.”

While Riley has above average visual and spatial awareness, he has a delayed processing speed, which means it can take longer for his brain to respond to and interpret an external impulse, such as someone talking to him. Sometimes when Lindsay looks Riley in the eye and asks him to do something, he’ll just blink at her.

Before her own health problems, even though she logically understood the symptoms of Riley’s conditions, it could be hard sometimes to not just see a normal kid avoiding his chores or homework. But after feeling the processing delay in her own brain, she has learned to repeat herself instead of jumping to the opinion that he’s ignoring her. And when she does get frustrated, she’s quicker to tell him it’s not his fault and that he’s not in trouble.

Both through her own experiences, as well as the growing resources available about autism and ADHD, Lindsay understands part of what Riley goes through — for that she is grateful. What she struggles the most with now is guilt. “I worry if I’m doing enough for him. I feel guilty when I have to ask for help for myself.”

This guilt comes from the burden of needing to assure others they’re not “faking it,“ as Lindsay puts it. She explains, “I constantly worry whether people — be they Riley’s providers or my professors — will believe what I’m telling them because our challenges are invisible.”

“I constantly worry whether people — be they Riley’s providers or my professors — will believe what I’m telling them because our challenges are invisible.”

At twelve, Riley has mostly caught up developmentally, but he still has behavioral issues that impact him in social situations, such as school. He struggles with impulse control, like speaking at inappropriate times, and has a hard time understanding personal space. “He just doesn’t realize how close he is to somebody … because he just doesn’t have the kind of appropriate perception that a neurotypical kid would have,” Lindsay says.

Similarly, Lindsay is getting better at managing both her pain and energy, but can’t always maintain the demanding workload of her classes. When she gets behind, some professors are willing to work with her and some aren’t. She has learned to ask for other’s advice rather than simply explaining her situation and hoping for understanding. She takes this approach, “so that nobody feels like I’m stepping on toes, but it’s a very fine line sometimes.”

Lindsay explains that when people work with them, her advocacy is always worthwhile. “When I see a light go on for Riley, when he brings home a good grade, or I am able to turn in work I’m proud of because I was granted that extension, it’s all worth it. I know my son is bright, and I know what I’m capable of, so it’s very satisfying when we get the chance to prove it.”

Lindsay advises other parents facing skeptical authority figures to trust their instincts. You’ll know when something isn’t right with your own body or with your kid, she explains. “You have to push for yourself, and you have to push for your child. I think you know if your child is different. And there’s nothing wrong with a child who is different, but you have to know how to help them. Those children can be just as successful.”