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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.

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.