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The Four Magic Words That Gave Me My Voice Back

After a thyroid operation robbed me of my voice, I turned to a beloved children's book to give me strength.

As a little girl, my favorite book was The Little Engine That Could. I wanted to read it again and again. A strong-willed child, that story of the little choo-choo who would chant “I think I can, I think I can” until he made it over the mountain spoke to me.

Yet I don’t think I ever realized just how powerful those four words could be until I lost my voice after having my thyroid removed.

I remember my doctor saying to me: “The lump in your throat has enlarged. Your thyroid will have to come out. I don’t think it’s malignant, but we can’t take a chance.”

I’ve always been an optimist. So while I was scared of surgery, I kept repeating to myself: It’s probably not cancer. 90% of patients who have this operation are fine. 

The author, Kay Winters.

When the dreaded day came and the operation was over, the lump was benign. “I knew it!” I crowed.

Or I tried to. But almost nothing came out. My voice was hoarse and raspy, like a person making an obscene phone call.

The doctor assured me my voice would come back in time. But it didn’t.

Recovering at home, I snuggled down beneath the patchwork quilt, and tried to push back the January gloom by reading cheerful “Get Well” cards, eating good food and wine, and visiting with friends who came to see me and my husband, Earl. Every morning, I would wake up, hoping this was the day my voice would come back. “Hello, hello!” I would say, hoping to hear my voice. But only a sliver of sound ever came out.

After a month with no improvement, I went back to the doctor. He looked down my throat with a mirror, and shook his head.

“The nerves are damaged,” he said. “You have a paralyzed vocal cord. I’m sorry but there’s nothing to be done. You have all the voice you’re going to get.”

The doctor said: “You have a paralyzed vocal cord. I’m sorry but there’s nothing to be done. You have all the voice you’re going to get.”

After that, I knew my days as a part-time college instructor and consultant for the American International Schools had ended. Even the thought of going back to my job as a supervisor in four elementary schools, with only a whisper was mind-boggling. In the end, Earl had to push me out the door to go back to the outside world.

I tried to be cheerful and brave. On the outside, I smiled, but inside I felt my world had collapsed. Communication was who I was. Now, even asking for an order of seafood salad at the deli counter was almost impossible, let alone sustained conversation: I could barely be heard.

Online, Earl bought me a portable microphone, so I could amplify my voice for others. It looked like a black pocketbook and I could sling it over my shoulder. I practiced using it at home, until I was comfortable with it, then return to work.

At school, staff members reached out in loving ways. Notes in my box, a squeeze on my arm, hugs in the hall, a pot of tulips for my office. There was even a secretary who always said: “Oh, you sound so much better today!”

I didn’t. But she helped me to think… maybe…

Nine months passed. There had been no change in my voice.Everyone was very patient and understanding.  The students learned to be very quiet when I came in the room. They would wait for me to plug in my mic to begin a lesson. Likewise, there was always a microphone available for me in the auditorium, and in smaller meetings, I would use my portable to be heard. But it was make-do and needs must. I felt tentative, uncertain, and vulnerable.

Finally, I met a kindergarten teacher from another district. She had had the same operation; she also whispered. But her voice was louder and stronger than mine.

We compared notes. “Go see Renee Blaker, a speech pathologist from Doylestown,” she said. “If anyone can help you, she can.”

I needed a prescription to see a speech pathologist, but when I called my doctor about it, he snorted. “Waste of time,” he said. “Teflon surgery would be a better bet.”

“I want to try,” I whispered. He sighed, and reluctantly signed the paper.

Renee was a tall, attractive woman with an expressive face, kind eyes, and dark hair. She listened to me whisper, then read the doctor’s report. She shook her head and smiled at his negative assessment.

“I have a little magic in my pocket,” she said knowingly. “I can help you if you work. You’ll need to practices five times a day, for fifteen minutes each time. I’ll see you twice a week.”

“I have a little magic in my pocket,” she said knowingly. “I can help you if you work.”

It was December. As I drove home from that first appointment, snowflakes whirled on the windshield, and I thought I heard a little voice in my head say:

I think I can, I think I can…

I followed Dr. Blake’s instructions. I started with hard vowels–any, every, each, out–and soon moved on to phrases. Alter the arbor, etch a sketch. Five times a day for 15 minutes, I recited these seemingly random words and phrases, week after week.

I’ve always believed in the power of visualization. Every day while pushing out those phrases, I imagined standing in front of the school auditorium, speaking loudly and clearly. It was the greatest reward I could think of.

But there was no change: my voice was still a whisper. Yet I continued; at least the exercises made me feel like I had some control.

January, February, March: they all passed. Now, I was up to sentences: “It’s odd that Arthur’s not at Eileen’s tea.” I said that so often, my husband started saying it when he got into bed: “Yes, that is odd about Arthur, isn’t it?”

April, May June. No change. Sentences turned into paragraphs. Still I practiced. When we sailed on the Chesapeake, or Lake Nockamixon, my words wouldn’t carry. The wind would whip my whisper away.

Some days, when I went for speech therapy, I just cried. We didn’t do sentences. Renee and I talked. She understood.  I had to mourn my loss before I could move on. Her staunch belief that I could retrieve my voice gave me courage to continue.

And then it was Labor Day. Time for another school year. As I came in, teachers said: “Oh, you sound stronger.” I thought maybe I did, but I couldn’t be sure.

November.  Time to welcome my reading volunteers at the Bridgeton School. The auditorium was full with parents. As I picked up the microphone, the audience got very quiet.

“Welcome to a new year!” I said.

It wasn’t a whisper. Out came my voice!

I couldn’t believe it. People rushed up to give me a hug. After all that practice, and all my work visualizing just this moment of triumph, it had finally happened!

In one swoop, I felt like I’d gotten my life back.

My recovery wasn’t a miracle. My vocal cord was still paralyzed, but thanks to all of my practice, the other one had moved closer and was now doing the work of two.

In one swoop, I felt like I’d gotten my life back. Day after day of vowels, consonants, phrases, sentences…. the endless support of my friends, family, students, and colleagues… and that little pocket magic of Dr. Blake’s. It had all paid off!

But maybe, after all, some of the credit should go to the Little Engine That Could. He, too, had taught me some magic words:

I think I can, I think I can…

Health & Fitness

To Beat Cancer, Talk To Your Family

After a cancer diagnosis, families that talk and listen to each other experience better health outcomes than those who don't.

Though medicine has scarcely stressed it, for Dr. Carla Fisher, an assistant professor at the University of Florida’s School of Journalism & Communication, good cancer care is all in the family. Strong familial relationships, she says, are crucial to cancer recovery. To prove it, Fisher has interviewed over 150 patients and family members about their relationships with one another then analyzed health outcomes of her interviewees. “We’ve found that [family] communication patterns can actually impact health outcomes,” she says.

Coping Together, Side By Side by Carla Fisher explores how family relationships can help improve health outcomes after cancer diagnosis.

Though such interviews can become emotional, they have allowed her to identify common communication patterns and formulate recommendations for clinicians and patients that encourage more positive and wellness-supporting rapports. Fisher focuses on breast cancer and the mother-daughter relationship (a subject which she tackled in Coping Together, Side by Side: Enriching Mother-Daughter Communication Across the Breast Cancer Journey) but the idea extends to other familial ties as well, she says.

In her field, Fisher is foremost. Along with earning numerous awards, she has collaborated with such medical behemoths as USAID, the National Institute on Aging, the National Cancer Institute, Mayo Clinic and the Memorial Sloan-Kettering Cancer Center. Clinicians, she says, are generally receptive to her ideas. But it will take time to fully incorporate them into a field that has long weighted the biophysical aspect of patient care over the psycho-social. Still, Fisher is in it for the long haul, she says.

We reached out to hear more about how good family dynamics can help fight cancer.

What initially got you into this kind of work?

Probably subconsciously it’s always been driven by my own family narrative. My mom is the youngest of eight and her oldest sister Rose was diagnosed at age 34 with breast cancer. Rose had four daughters, from age two to fifteen. Rose would talk about how the only thing she was concerned about was her daughters. This was during a time when they really didn’t know what they were doing with cancer, in the late sixties. She ended up dying two years later. I grew up hearing about that from my mom. Rose was like a second mom to her. But the family hadn’t let her talk [about her cancer]. My mother always looked back on that as, ‘We should have let her talk.’ She would remember that and tell me that her own mother, my grandmother, was never the same after Rose died. That profound loss was something that was woven through the fabric of my family identity. I hadn’t realized that it is actually a lot of families’ stories until I started this research. I would hear it over and over again.

Why is it important for cancer patients to sustain healthy familial relationships?

You think it would be a no-brainer. But the way things are prioritized in healthcare, you still have to have that evidence-based argument.

One of the things I’ve found is that, for mothers and daughters after a breast cancer diagnosis, if it’s a relationship where they’re communicating more openly about their concerns and needs, you see better health outcomes. On the flipside, if they’re acting more withdrawn from each other, they tend to have more negative physical health outcomes; fatigue, sleep disruption, things like that.

That’s what always informs my research: the clear connection that your interpersonal [family] life is as important to your survival as other physical or biological processes that tend to be prioritized in healthcare.

Your [family] life is as important to your survival as other physical or biological processes that tend to be prioritized in healthcare.

Health isn’t experienced in an individual vacuum. But at the same time, we’re not born with innate communication skills. We might think we’re being supportive or talking about things in a healthy way [with our family], but that’s not always the case. What I really focus on is identifying patterns of communication that promote health. Then I make that argument in healthcare, particularly cancer care, that we need to incorporate family communication and support services for the patient in order to ensure that the patient is maximizing their health and survival.

Carla Fisher

How does age and generation play into this?

What’s healthy for, say, a daughter diagnosed [with cancer] in her thirties coping with a 70-year-old mom, looks a little different if it’s the mom who was diagnosed. That’s partly because the younger generation’s boundaries of privacy are very fluid: we’ve been socialized to be more open. The older generation grew up in a time where you didn’t even say the word cancer: it was highly stigmatized. You certainly didn’t talk openly about the female body in a way that we do today.

The older generation grew up in a time where you didn’t even say the word cancer: it was highly stigmatized.

Older women in their 60s and 70s will talk to me about how their parents didn’t tell them anything. They had no idea what was going on when there was a parent diagnosed with cancer. So they feel that they’re being very open with their adult children by letting them know what’s going on and keeping them in the loop. Then, when you talk to their adult children, especially the daughters, they don’t necessarily feel that mom is being as open as what they would want. For those relationships, it’s really important that daughters respect privacy when it comes to parents. The boundaries of privacy are critical when it comes to their wellbeing. You don’t necessarily need to know everything.

How is it different when it is daughters that have been diagnosed?

Daughters in 20s and 30s are still developing a sense of independence. One daughter said to me, ‘The one thing I like that my mom did was that she left it up to me whether or not I allowed her to be there and be present in treatments or appointments.’ She appreciated that because it provided her control and independence, something that you’re robbed of after a cancer diagnosis. When she finally did say, ‘Mom I need you to help me,’ she said it really struck her how happy her mom was that she had allowed her to be there. ‘I realized that my mom needed to be there. She needed to mother. That was her own way of coping with [my diagnosis],’ she told me.

So I think when you talk to both of them together, they get a better sense of what it is that [the other] needs.

What are some signs of a not-so-healthy mother-daughter relationship?

When moms are diagnosed, they’ll often talk to me about how they want to talk to their daughters about what’s going on. They have this profound sense or need to protect their children from developing the disease themselves in the future. But oftentimes, after a diagnosis, daughters will withdraw from their mothers to avoid talking about cancer. One daughter explained it to me: she could not picture her mom not being there next year, because doing that was just too much for her. So she shut herself away in a box as a way of self-preservation. The problem is, mothers get really worried about this. So even if a daughter doesn’t intend it, this behavior can actually inhibit her mother’s health.

What ended up getting this particular daughter to come out of that box was realizing that she could support her mom in a way she could never do before. And also talking about cancer made it less scary. When not talking about it, your imagination runs wild and it becomes this big scary nebulous thing.

What are some recommendations you make to families dealing with diagnosis?

Humor, listening, affection. That’s listening and validating feelings, not listening and silencing them. So if someone says, ‘I’m having a shitty day’ or ‘I’m worried about recurrence’, you should not say, ‘Don’t worry about that,’ say, ‘Yeah it’s scary, I agree. I’m here for you.’ Listening with silence is good too, though it is hard for all of us. Being more open and showing affection is great. Affection with no words is really, really helpful emotional support for mothers and daughters. Humor, listening, affection.

This interview has been edited for length and clarity.

Essays

My Father The Werewolf

When I was a kid, my Dad taught me all about werewolves. Little did I know he was preparing me to understand his depression.

Happy Holidays! Folks is taking a break until January 2nd. In the meantime, enjoy this story from our archives. Originally published on September 11, it is one of our favorite pieces from 2017.


The first time I realized my dad wasn’t like other dads, he sat straight up in bed, wide-eyed, and started screaming: “WHO ARE YOU? WHAT ARE YOU DOING HERE?”

I would later become a smart aleck, but at the time, I was three, maybe four, so I didn’t respond to these questions the way I might now: “Hey, if anyone should know, it’s you.”

Besides, my father wasn’t joking. As he shook me by the shoulders, his eyes rolled white in his head, like the eyes of a terrified animal.

 

A moment before, I had been watching Sesame Street on the edge of my parents’ bed. My father was napping. He’d been sick for the last couple of days, so he’d stayed home from the office that day. It must have been late, because my mother, who also worked, was home. I think it was spring or summer, because it was still daylight out.

Or maybe it was a weekend in winter. How can you totally trust a 35-year-old memory? All I know is that when I remember that day, it happens in the evening. In the springtime. And my father is still there, still alive, shaking me by my tiny shoulders and yelling.

“WHO ARE YOU? WHAT ARE YOU DOING HERE?”

Downstairs, my mother hears the commotion. She shouts up the stairs, “Bruce? What’s wrong?”

The reedy tremolo of terror in her voice gives my father, deranged, another vector than the small, shivering child he was shaking in his hands. (Did he know I was a child, let alone his child? Was he that far gone? Another answer I’ll never know.) He erupts from the bed, hurling me into the corner, and by the time I have picked myself up from the floor, the bedroom is empty.

I follow him into the hallway, sniffling. I feel the overwhelming guilt of the toddler, whose heart crushes itself under the solipsism of his newness. Whatever is wrong with my dad, I must be the cause. Yet I have no real idea of what it is I could have done.

Whatever is wrong with my Dad, I must be the cause. Yet I have no real idea of what it is I could have done.

He’s in the hallway now. Sun slants between the bannisters, painting dazzle camouflage against the staircase wall. He strides down it, something primal, senselessly screaming. My mother, also screaming, tries to meet him halfway, but with the effortless grace of an acrobat, he throws her over his shoulder. He has almost a foot of height on her; I peer from the top of the staircase as she is carried, kicking her legs, into the shadowed floor below. I don’t remember what she’s wearing, but her hair is a brown perm, laced with the gold of 1983 sunshine. Her face is toward me.

“Go upstairs John!” she shouts at me, with frantic eyes, as he carries her down. “Run!

I do run. I run back to the bedroom, where I close the door. Sesame Street is still playing. Things have happened so quickly that the very same skit my dad and I were watching together when he suddenly threw me across the room—sculptor Ernie plopping an orange nose onto a clay Bert—is still playing.

There, quaking in shock, I feel the floorboards beneath me vibrate as my parents howl and wail. Then, muffled, they both go quiet, and I hear my father sobbing. It curdles at the edges: a sob of utter existential defeat. There’s no power in it at all.

And that’s when I finally start crying too.

My dad spent the night in the hospital, maybe two. It was explained to me he’d had a reaction to a new medication; weaned off it, my dad was back a few days later, good as new. We never spoke about what happened that day. When I was younger, I thought it would shame him; when he was older, he would have no longer remembered any of it.

But that was how I learned that my dad was mentally ill.

 

As I write this, a third of a century later—my father’s ashes carefully locked in a gold-foil vacuum seal bag and placed in an understated black urn on my desk, so I can look at him as I write—I marvel at how easily my father’s severe depression was slotted into that long-ago toddler’s universe. In the span of a nightmare, I effortlessly swallowed up this new and horrible fact that the author of my being was just a flipped neuron away from being an entirely different person, one who forgot who I was, and even attacked me.

But when I think harder about it, I suppose it’s not so surprising.

Even before  his illness was revealed to me in such stark relief, he laid the groundwork preparing me to understand.

 

The Brownlee Family Clockwise from left: Sally, Bruce, and John.

According to family legend, the day my parents took me home from the hospital, they got in their first fight about how I should be raised.

Tired, my mom had asked my father to watch me while she took a nap; when she woke up, my dad and I were cuddled up in the living room’s cathode-ray gloam, watching a lycanthropic Oliver Reed bare his fangs on Channel 56’s Creature Double Feature. As someone who has been on the end of them, I can imagine her reprimanding shrieks. But from that day on, monster movies became a lifetime bond between me and my father.

A few years later, I remember cheap vinyl socks crackling as I sleepily ambled downstairs at night in my Dr. Denton’s, drawn to the flickering, fluorescent orange-blue that filled the living room like will-o’-the-wisps. My dad was in there, drinking a beer—he would stop drinking entirely because of medications a few years later—and watching The Howling. He picked me up, sat me on his lap, and we watched the last few minutes together.

I remember a lustrously coiffured Dee Wallace as a nightly news anchorwoman transforming into a gossamer blonde werewolf before being shot to death on-air by her executive-producer boyfriend. I wasn’t scared. I was fascinated. But one thing confused me.

As Dad tucked me back into bed, not even bothering to ask me not to tell Mom about this—we were always complicit on the subject of monsters—I remember asking him: “Why was the monster lady crying at the end?”

“It’s because she’s not a monster. She can’t help it. She’s just cursed.”

He pursed his lips in dry mock seriousness, nodded sagaciously, and quipped: “She must have been having a bad hair day!” (My father and I shared a sense of humor that is best described as equal parts Evelyn Waugh, Groucho Marx, and Al Jaffee’s Snappy Answers to Stupid Questions.)

But then, I remember, he became thoughtful. He walked to the door, flicked off my bedroom light, and stood in the doorway. Molten around the edges, his far side illuminated, his profile an unknowable eclipse, he said: “It’s because she’s not a monster. She can’t help it. She’s just cursed. Love you, John.”

And then he shut the door.

 

So while it’s remarkable that I accepted my father’s depression so readily as a toddler—particularly following such a violent mental episode—it’s not so surprising when you realize that I already knew about werewolves. And what was my father if not a werewolf: the slave to the susurrus of primal tides whispering to him in a voice that only he could hear?

Panels from Tales from the Crypt No. 35, a horror comic John and Bruce used to read together. (Published with permission, William M Gaines Agent, Inc.)

Not that I believed lycanthropy was what literally had happened to my father that night when he shook me by the throat. I didn’t go into pre-school the next day, and, like Calvin, throw open my hands while dramatically intoning the title of an invisible ’50s movie marquee: “My Father Is a Werewolf!” I only mean to suggest that I accepted the fact of his personality-altering mental illness with the same innocence and appreciation of irony with which toddlers accept all fairy-tale curses.

Decades later, the werewolf analogy still helps me make sense of my father. Because, as with a werewolf, it is impossible to peel the man and the depression apart when you’re talking about him. They exist forever co-mingled, not in tooth-and-claw but in temperament.

 

Bruce Brownlee

My father, Bruce Gordon Brownlee, was born on December 30th, 1950, and died just 66 years and one month later.

As the oldest of three boys, his birthday caused him a great deal of anxiety growing up. He was never sure if there was a conspiracy between his parents to keep a few presents back from Santa to give him on his birthday, thus affecting a karmic sort of gift imbalance between him and his brothers. So, for his only son, he overcompensated. My Christmases growing up were maggoty with presents, and from my father—who never gave a gift that he wouldn’t want to get himself—my childhood was filled with formatively corrupting presents: sci-fi paperbacks, bound collections of horror comics with titles like Tales from the Crypt and The Haunt of Fear, and home-pirated VHS tapes packed with B-monster movies.

Dad spoiled me growing up, but he was generous with everyone, in quiet, understated ways that taught me a lot about what it meant to be giving. I remember, for example, that every time he went out shopping, he came home with a Hershey’s bar and a romance novel for my mother; unable to tell the covers apart, or remember the titles, he’d find ones she hadn’t read by checking the publication date. This is still, for me, the very definition of romance.

My father was generous, but he was also depressed, and the nature of depression is to be selfish.

I think about my father’s generosity a lot. My father was generous, but he was also depressed, and the nature of depression is to be selfish: to starve those who love you of the best of you, in the relentless feeding of that which can never be nourished. In that, he—the most depressed person I ever met—was also the most selfish. For my entire life, he would give me anything I asked for, as long as it was a movie or a book. But when my mother and I begged him half a dozen times to go see a doctor if he loved us, he wouldn’t lift a finger. How do generosity and selfishness co-exist like that in a person without destroying him?

I don’t know. And, of course, it did eventually destroy him. But that was my father: a lycanthrope of contrasts. Whatever he was, he was also the opposite.

 

 

Dad prided himself on his intelligence.

For a long time, I worshipped him for it. He was undeniably a brilliant man. As long as I knew him, he usually had two or three books going at once, ranging from trashy pulp paperbacks to sweeping overviews of post-Enlightenment culture. A shut-in for the last twenty years of his life, he probably read an average of a book a day. And if you were a fellow reader, to come over to his house meant having an armload of books foisted upon you: obscure Russian sci-fi novels, lectures by Nabokov, thick encyclopedias on film theory, or whatever other subjects your brief conversation might have touched on.

My dad’s recommendations were so good that, later in life, when he had been robbed of most of his memories, I would recommend books back to him that he’d made me read years before. He’d then brag to his friends about what great taste in books his son had, never knowing I’d grifted him with his own discernment and taste. (I don’t feel guilty. How many of us can say we’ve had the good fortune to read our favorite books for the first time twice?)

 

He knew just as much about film. Even more about music, if you can believe it. But none of his intelligence prevented him from being a colossal dumbass about the important things.

Take his health. The man—a three-to-four-pack-a-day smoker for most of his life—honestly believed that the health concerns around cigarettes were overblown. Since 1985, my parents lived on a steep hill, and the only sunlight he got for the last decade of his life was walking down to the corner to buy his Marlboro Lights 100s. In the last months of his life, it turned out that he had experienced light-headedness, numbness, and chest pains multiple times on this twice-weekly nicotine pilgrimage, but he never once told anyone about it. Instead, he would take so much aspirin his nose would bleed, while wrapping a frozen towel around his body like some sort of strange albino ice yogi, ignoring the tell-tale signs of what were proven later to be multiple heart attacks.

 

When he eventually had such a massive cardiac event that his heart practically exploded on the spot, my mother told me she thought he’d known he was having heart attacks but chose to ignore them as a way of killing himself. This, I think, is putting an overly heroic sheen on it, but the interpretation doesn’t surprise me. My mother worshipped my father, and there’s something noble about a slow, plausibly deniable suicide. But an intelligent, well-read man ignoring the obvious signs of his own impending heart attack while his loved ones beg him to see a doctor? That’s just the setup to a bad fucking joke.

The truth is, as I knew him, my father in his later years was a man who could intellectualize his way around anything, up to and including his own heart attacks. Intelligence, for him, had become not a tool to be applied to the real world, but something that replaced it: the ultimate nicotine patch.

A self-described “Jeffersonian liberal” and “Buckley man,” some of these justifications were political. Incapable of earning a living, my father railed bitterly against social welfare programs designed to help people like him, despite the fact that if it were not for my mother, he could not afford to treat his depression. Likewise, my father was a lifelong defender of science and sweat profusely if the mercury went above 68, but when he died, his reading table was stacked with small press treatises denying climate change.

Yet if anything, I found these rationalizations more understandable for having been political. Such intellectual infections are as subjective as they are universal; not so his other justifications, which served no other purpose than to shield him from the quick of life.

In the last years of his life, flesh-and-blood experiences became things no longer worth having. So though, through his library, he’d practically lived in Europe since he was 18, he never expressed interest in coming to visit me during the decade I lived there; there was nothing there, he insinuated, he hadn’t already experienced. Likewise, if Mozart himself had come back to life, my father–the man who took me to see Miles Davis live when I was three–would have expressed no interest in seeing him perform.

Before my father died, I once thoughtlessly told him that I didn’t care if my own kids grew up to be intelligent as long as they grew up to be kind, daring, and hardworking. To that, he didn’t say anything. He just lit a cigarette. Or he tried to. His hand was shaking so badly, he lit his sleeve on fire.

Intellect, you see, was all the self-worth he had left.

 

 

Growing up, my dad was my best friend. We were more than inseparable buddies; he was my hero.

When I was just a toddler, and his depression wasn’t as bad as it would one day become, my dad would take me down to Brookline every Sunday to a movie theater called Off-the-Wall. There, he would buy me a brownie, and we would watch old Buster Keaton shorts, while a tweed-decked septuagenarian accompanied the flickering silver screen on an out-of-tune ragtime piano. This is a quintessential “Dad” memory for me: How could anyone have a better date with their father?

When I was four or five, we played the same game every night. It went like this: right after my dad read my bedtime story to me, he would grab my favorite bath toy—a rubber rooster with a built-in squeaker that kind of looked like a down-rent Foghorn Leghorn—and jump under the covers with me. There, we would hide, snorting and giggling, until my mom came in to play her part. “Where’s Bruce and John?” she’d ask, ever the straight man, while the squirming, human-size lumps under the Return of the Jedi duvet responded in chorus: “Nobody here but us chickens! Cheep, cheep, cheep.”

My dad and I loved to draw together. He was particularly great at it, especially before his meds took away his hand coordination. One of his cartoons, called “My Pal, the Trashcan,” still sits framed on my desk, 33 years after he drew it. It’s essentially a self-portrait. My dad stands in the background with a fedora and an exclamation point above his head. I’m the pot-bellied kid, his belly button peeking out. My pal’s, quite obviously, the trashcan…not to be confused with the mythical toilet from which my father always insisted, with great solemnity, he had plucked me as a baby and for whom I am named: John.

My Pal, the Trashcan Bruce Brownlee

No one made me laugh harder. When I went to summer camp, he would send me care packages of comics and non sequitur postcards that were so hilarious that my camp counselors would read them aloud to the entire camp over mail call. One, featuring Humphrey Bogart smoking a cigarette, says on the back: “Dear John–Going through some old photographs, we came upon this baby picture of you! Boy, you sure were cute. (Note the pacifier.)” Another, which I’ve sadly lost, alleges to feature him indulging in extracurricular activities during a typical day at summer camp in the ’50s; the picture on front is Indiana Jones punching out a Nazi.

Years before MST3K, he and his brother, my Uncle Bob, initiated me to the joys of movie-riffing, ragging on movies like Plan 9 from Outer Space and Robot Monster until I was practically hyperventilating with laughter. He introduced me to Harvey Kurtzman, Firesign Theater, Jeeves and Wooster, Mad Magazine… influences which shape my sense of humor to this day.

We even traveled together. I remember a family trip we once took to Minnesota, where he kept me busy for three days straight by feeding me horror comics he’d squirreled away under the driver’s seat. One summer, we went down to Washington, D.C., to visit Uncle Bob, and he took me to a John Zorn concert, where the avant-garde saxophonist performed a cover of the ’60s Batman theme as if just for me.

These are the years I remember most vividly about my father.

The further back I go, the more clearly defined he was. It’s when I remember him in the later years of his life that he grows hazier. The memories themselves don’t go fuzzy; he does.

 

In 1989, my father—bullied at work for his mental illness—quit his job and became, for all intents and purposes, a shut-in.

As a writer, it makes me sad that, for what would end up being the last three decades of his life, there’s almost nothing to describe about this period, except to say it was one of slow-motion entropy. During it, he gradually lost abilities most of us wouldn’t even think to call “skills”: To pick up the phone and call someone, go visit a relative, or even just open the mail.

Within just a few years, my father’s entire life circumscribed an irregular quadrangle just a couple thousand square feet in area. One axis was the local gas station, where he bought his cigarettes; another, his bed, where he slept 16 hours a day. A third was his office, where he kept his computer and which—after his death—was so clogged with depression and ash that you would believe he’d been cremated there on the spot. The last axis was the couch, where a Dad-shaped indentation weighs down the springs to this day. It was here he read books, watched movies, and drank coffee by the pot.

 

Over time, he started refusing to see his psychiatrist regularly. This didn’t result in him being cut off from his meds: His psychiatrist continued to prescribe them based on my father’s emails and my mother’s reports on how Dad was doing.

He also stopped seeing other doctors. The result was that we no longer had any idea how many of his shakes and tremors were because of his meds and which were because of his undiagnosed illnesses.

Likewise, he wouldn’t see dentists, so he started losing his teeth. His resulting self-consciousness formed a closed feedback loop with his depression, dead-bolting him in the house. His hair grew long and lanky; he became so pale as to be nearly translucent. At 65, almost nocturnal, he had the look of a toothless white wolf.

 

Every werewolf story is about a silver bullet.

This was true for my father. But the silver bullet he believed would one day cure him wasn’t literal. It was some magic drug that would one day be fired out of the rotating barrels of a pharmaceutical company’s R&D revolver.

If you suggested that he go for a walk or a run, or go with you to a movie, or volunteer somewhere, or see a therapist, Dad would openly scoff: He’d tried all that, and the only thing that ever worked against his depression was drugs.

“No one really understands why the brain works the way it does.”

In his youth, he’d apparently abused alcohol and experimented with psychedelics; it was to his great credit that, once I was born, he’d mostly given these up for my mother. “Booze was the only thing that ever really made me happy,” he once told me, wistfully, through the literal rose-colored sunglasses he wore whenever he left the house, even on the cloudiest days.

But until I was about 27 or so, he still held out hope that the next medication he was prescribed would be the one that would finally obliterate his depression.

“No one really understands why the brain works the way it does,” he would often say, like a priest reciting a holy mystery. According to this logic, then, it was just a roll of the dice before the pharmacologists stumbled upon the mystical alignment of molecules that would make his brain work like it should. Until that moment arrived, there was little point in doing anything but wait; happiness could not be found in anything but chemistry.

Yet even from an early age, I was doubtful my father would recognize the silver bullet he was looking for if and when it ever came for him. If you asked him on any given day how he was feeling, he’d reply: “It’s the worst day of my life,” no matter whether he was comatose with depression or talking to you on your wedding day. It was almost like my dad had lost his inner compass to tell you how he was feeling: even if he acted like he was feeling better, he’d tell you he was feeling worse.

I once asked my dad what he thought happiness was; he told me it was a gin and tonic. He wasn’t joking. The only way my father could imagine the experience of not being depressed anymore was to equate it with being euphorically drunk or high. But this isn’t what wellness is. Neurotypical humans still feel sad, and hopeless, and anxious, and overwhelmed. It isn’t that they are happy all the time: it’s that they’re capable of happiness in the first place. I realized my dad didn’t understand this, and because he didn’t understand it, all his silver bullets would inevitably wear away to show the brass beneath.

No wonder the medications he thought were “working” made him manic, and inevitably led to deep crashes, which just made him ever more desperate.

No wonder the silver bullet he eventually turned to came from a can.

Tales From The Crypt No. 35 (Published with permission, William M Gaines Agent, Inc.)

 

One morning, shortly before dawn, my mother awoke from a nightmare very early to find herself sleeping alone. This wasn’t unusual—my dad was a night owl—but when she went downstairs, she found him in the living room, drinking a six-pack by himself.

It was a bigger deal than it sounds. Drinking while taking the sort of meds he was on could trigger another violent episode like the one that had happened so many years before. Twenty-odd years earlier, in fact, my mom threatened to leave Dad if he ever drank again. From then on, he never drank a drop.

But he was drinking now. It was a sign of how truly desperate things had become.

My mother didn’t leave him. How could she? She worshipped him. But as a last-ditch effort to cure his depression, they went to his psychiatrist and told him—over the doctor’s objections, surprisingly—that they wanted to try something extreme: electro-convulsive treatment, or ECT.

In other words, electroshock.

In other words, electroshock.

I was 26 or 27 and living abroad when my mother called to tell me about this.

“No one really knows why it works, but it does,” my mother insisted, blindly repeating one of my father’s holy mysteries into the telephone mouthpiece. “It’s not like in One Flew Over the Cuckoo’s Nest. Really, the stigma of this treatment has really prevented a lot of people from being helped!”

Stunned, I said nothing.

More to fill the silence than anything, my mom told me all the possible side effects: confusion, disorientation, memory loss. But those side-effects would be temporary, and if it worked, my dad’s depression might be cured.

When she was finally talked out, I stammered: “When do you think… when would this start?”

A long pause.

It had already started.

 

Initially, I followed the lead of my father’s black humor and treated his ECT like a joke.

 

From my mother, I heard that my dad had ironically started wearing a T-shirt with Daffy Duck dressed as Napoleon to his ECT sessions. Delighted, I completed his outfit by mailing him a crushed velvet bicorne, replete with a large N stitched in French piping across the front. Eventually, I heard from my mother—my dad was always too tired to talk on the phone during this period—that this ensemble was eventually banned from the ECT ward, not because it was insensitive, but because it was making Dad’s fellow depressives laugh too much.

It was only when I came home for Christmas that I realized exactly how invasive the treatment really was.

It was a few months after his treatments began, and he’d had a session before my plane arrived.

“Look, Bruce, it’s John!” my mother said, with a not-quite-convincing air of nonchalance when he came slumping down the stairs as we arrived home from the airport.

My dad covered up his confusion, but I could tell he didn’t recognize me at all.

And suddenly, ECT didn’t seem so funny.

 

In the end, my father had about 18 ECT sessions over six months. “Far, far too many,” my mom said gravely when I asked her to confirm that number ahead of writing this. (Patients usually receive six to twelve sessions.) “We should never have kept going.”

Looking back, it’s hard not to agree. But for a while, the changes seemed miraculous.

Yes, my dad’s memory was shot. When it came to me, it was as if he’d experienced a time jump. He remembered me up until my tenth birthday or so, after which, I suddenly aged 17 years overnight.

Those memories never came back; to reminisce with him about something, I’d have to tell him the memory first. He simply had no recollection of how I had grown into the man I had become, and for the rest of his life, viewed me with a combination of love and awe, as if he wondered: How can this normal, functional person be my son?

 

But it had its advantages. For example, I no longer had to worry about whether or not I was buying books he’d already read for Christmas or his birthday. We got to watch Robot Monster together and laugh at the Billion Bubble Machine all over again, as if for the first time. And it blotted from my dad’s memory some of the more embarrassing or shitty things he’d caught me doing over the years: when I’d stolen money from his wallet as a teenager, for example, or the time he’d caught me watching some vintage ’70s porn when I was 15.

I also enjoyed my father’s utter incredulity about some of the more peculiar specifics of our shared history. For example, when I was 19, my dad once woke me up in the middle of the night in a panic. He had somehow infected my mother’s work computer with a virus that had converted the screen of her Windows 95 desktop into what can only be described as a pornographic amalgam of pulsating, 16-bit genitalia. “I don’t know what I did, but you gotta help me get it off before your mom wakes up, John!” he hissed to me through the door.

My dad was in stitches when I told him this; he just couldn’t believe it had happened.

 

The reason my mother and I were able to overlook my dad’s memory loss was because he suddenly wanted to do things again.

In the middle of his treatments, Mom and Dad took a trip up to Wells Beach in Maine, where I was conceived. There, they walked the beach and talked about their future…something they hadn’t done for years, because depression has no future.

They talked about their future… something they hadn’t done for years, because depression has no future.

And Mom wasn’t the only one who benefited. On my second visit home after his ECT, my dad asked me to take a walk with him, seemingly for the hell of it. We walked for about a half hour, talking about movies. To this day, although I can barely remember where we walked or what we discussed, the emotional memory of that walk makes something swell painfully in my throat.

The truth was that I could live with a father who didn’t remember where I came from, as long as we had a future together.

Right before I moved to Ireland, I remember coming home one night and finding my dad in the living room, sitting quietly. I thought I’d join him, but as I approached the couch, his eyes barely flickered at me before resting back on the silent TV. I must have thought he was engrossed in a movie—maybe one of those old silent movies we used to watch together—but when I sat down, I saw the television was off.

“Watching a ‘Zero-D’ movie, huh, Dad?” I asked him, recycling one of his favorite jokes–a play on 3-D movies–from when I would hide my eyes while watching scary movies as a kid.

He didn’t laugh. He didn’t smile. His eyes didn’t shift. He just kept smoking, silently. And when he was done, he stubbed out the butt and lit another one, just as quietly.

We sat there for some time, at midnight, watching nothing together. Then I kissed him on the forehead and went to bed, knowing in my heart that the next time I flew back to the States, it might be because he’d spilt his veins into the sink.

Compared to the fatalism of my father’s impending suicide, ECT seemed like a godsend.

 

My father was the one person who didn’t think the ECT had worked. But we didn’t take him seriously.

“I still hate myself,” he once told me. “Just now, I can’t remember why.”

We didn’t really listen. True, my father wasn’t really a reliable narrator of his own experience: He was the man who called wolf because there was always one hiding right behind his eyes. But that’s not why we didn’t listen. We ignored him because his memory loss seemed inconsequential compared to the fact that after years of neglecting our needs and wants, he was finally giving us new memories to remember him by.

But my dad was right. A year later, maybe two, his depression was worse than ever, except now, he was only a shell of who he once was. For a while, yes, he was disoriented enough to be more compliant with us, to go with the flow. But that compliance was never happiness.

ECT didn’t work, at least for him. It didn’t cure his depression, any more than you can cure a werewolf by ripping out his fangs. For my father, the books he’d read, the movies he’d seen, the albums he’d listened to were his eyeteeth, and by taking them out, all we’d done was succeed in making him toothless. In his compliance, yes, we mistook him for tamer, and in his tameness, we mistook him for being—if not happy—then well. But ECT had robbed him of his sense of self.

He didn’t die immediately after that. In fact, he lived another ten years. But he never tried to get better again.

John’s Wedding: The author’s wife and her parents, then from left to right, the author, Sally, and Bruce

 

When I was a teenager, I felt like I was the first person whose soul was ever scraped raw by the world. When I met others who felt the same way, we bonded to each other like barnacles. Although I don’t have that much in common with them anymore, these teenage friends are still the ones closest to my heart. It’s probably the same for you.

When my father was a teenager, he had a wickedly clever friend. His name was John.

My father and John found companionship in their love of pulp fiction, weird movies, jazz, rock, and psychedelic drugs. They also connected over their mutual battle with depression.

Then, when he was 24, John murdered his parents. He stabbed his mother to death with a butcher’s knife and killed his father while he was watching TV, smashing the elder’s skull in from behind with a single blow from a sledgehammer.

For his crime, John was institutionalized for life. After that, my dad never seemed quite comfortable making close male friends anymore.

I often wonder about this friendship. What was it like for my father?

For a few years, you have this friend, who loves all the things that you do and shares all the things you’re going through. For the first time, you feel understood. But then, this friend, this doppelgänger, turns out to be a maniac and has to be locked up.

Do you come to believe the inevitable endpoint of your depression is insanity, then being locked away forever?

If so, perhaps it was a foregone conclusion that once my father attacked me and my mother, he would believe that he should be locked away. And if the outside world wasn’t going to do it, his subconscious would.

After all, every werewolf story also ends up with self-imprisonment—ostensibly to protect others, but really so the werewolf can protect itself from the wounds of the world.

 

Tales From The Crypt Issue No. 46 (Published with permission, William M Gaines Agent, Inc.)

There’s a theme in literature, closely related in its own way to the duality of the werewolf myth, that I know resonated with my father.

“What makes Hornblower a hero is that he secretly believes he’s a coward,” he once told me when crushing one of his favorite C. S. Forester novels into my hand. “It’s what makes him act, but it’s also what torments him: the insistent belief that if another man were in his place, he would have acted without the same fears and self-doubts.”

What appealed to him in the adventures of Horatio Hornblower was the enormous divide—present even in great men—between our perception of ourselves and the qualities of the person we want to be. It is, I think, a divide that every self-aware adult can identify with; only sociopaths feel there is no divide within themselves at all.

The divide never goes away, but those of us who are able to achieve contentedness in our lives are able to bridge this gap over time, establishing a link of understanding between the reality of our condition and our own expectations of ourselves. A life well-lived is one that adds new boards and nails to that bridge every day.

As for depression, it’s the chasm that exists between. You build your bridge, don’t look down, and pray it never swallows you, because if it does, you’ll fall forever in that bottomless gulf, and die without ever landing.

That was my dad. The bridge he tried to build for himself earlier in his life inevitably broke underneath him. And in the gulf into which he fell, he fell forever, stranded within arm’s reach of both the person he was and the person he most wanted to be. We, those who loved him, wanted him to climb out, but the gulf was too wide. Once he fell, the closest we ever saw him come was when his fingers scraped the sides.

My father was my hero, but he was also the person I spent my whole life trying as hard as I knew how not to be. It’s filled me with complicated feelings about him—feelings I don’t know I will ever entirely know how to resolve.

So if, through depression, he was what I’ve called him—a lycanthrope of contrasts—then I’m a werewolf too.

When I remember him, the full moon will ever rise upon my thoughts. 

Tales From The Crypt No. 39  (Published with permission, William M Gaines Agent, Inc.)

 


Cover & Illustrations by Skip Sterling

 

Health & Fitness

2017: Our Favorite Athletes

Sport is for everyone. Here are some of the most amazing athletes we spoke to in 2017.

Athleticism is all about pushing your body to its limit; in doing so, you find strength you never knew you had. That’s why every athlete is amazing, from the NFL linebacker with the rare bone disorder, to the 18-year-old college freshman who bikes cross country with Type 1 Diabetes. In 2017, we at Folks have been lucky enough to be inspired by the stories of countless athletes, all of whom have found new strength in sport while also managing a health condition. Here are just a few of our favorites.

Rims and Hoops in Afghanistan

After he was paralyzed at 19, Jess Markt made it his mission to teach wheelchair basketball to young men in some of the most war-ravaged nations on the planet.

The Overachieving Teenage Pancreas

18-year-old Abby Pepper might be an overachiever, but thanks to Type 1 diabetes, she knows better than most how important it can be to ask for help.

Fighting Cystic Fibrosis With A Rumble And A Roar

When his condition was at its worst, Paul Underhill designed his own nourishment drink to prevent himself from starving. Now, he sells his drink across Canada to help others.

Fitness, Pain, and Ankylosing Spondylitis

Despite her diagnosis, Keefa Hawkins pushes her body to the limits through Crossfit: part of a quest to show that physical fitness is for everyone.

Superleg

Amputee soccer player, Powerade spokesmodel, and mountain climber, it’s as a teacher that Nico Calabria thinks he can really make his mark.

The Skater Kid Finds His Tribe

Born with spina bifida, Josh Bridgewater never felt like he belonged until he stepped on a skateboard for the first time.

Racing From Pain To Passion

When she was diagnosed with ulcerative colitis, Sarah McPherson thought she might never do sports again. Now an indomitable triathlete, they call her the Fearless Warrior.

The Marathoning Mom With Bones Of Glass

Why would you run marathons when you have bones that could break at any time? If you’re Jennifer Jansonius, you do it for your daughter.

From Bone Disorder To NFL Bone Crusher

As a child, former Dallas Cowboy Montrae Holland suffered silently with Blount’s Disease for years, all for his love of the game.

That One-Leg Monster

How K.C. Mitchell, a combat-wounded Army veteran, became the strongest amputee powerlifter in the world.

The Good Fight

2017: Our Favorite Health Heroes

Most heroes don't wear capes. From Obama's inclusivity advisor to a couple jokesters in Groucho Glasses, here are ten of the bravest health champions we wrote about in 2017.

Perhaps as much so as illness itself, shame is the enemy of good health. Shame makes us hide our conditions from other people, re-enforcing the cultural stigma that to have health problems is to be somehow less than “healthy” people. But all of us in our lives will have health problems to one degree or another. To have them is to be human, and so the concept of “health” itself is really about balance, and never allowing your conditions to prevent you from living the best life you can.

That’s why our heroes are the people who talk and advocate openly around illness and disability. These people are fighting the good fight: the ones who have made their life’s work to defeat shame and stigma around health in all its forms. Here are just a few of the bravest advocates we covered in 2017.

 The Mom With A Mission To Help Families With Down Syndrome

Roughly one in every 700 babies born in the United States has Down Syndrome. This mom is determined to help those children reach their full potential.

Breaking The Cone Of HIV Silence

In Kenya, a woman organizes her community to fight the stigma of AIDs.

Why Inclusivity Is Important, From Obama’s Champion Of Change

Deafblind activist Haben Girma explains why every company should design with inclusivity in mind.

Kids Fighting Cancer With Jokes (And Groucho Glasses)

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

License To Drive

For babies with mobility issues, the cool ride-on cars provided by Go Baby Go! are even better than motorized wheelchairs.

How To Spot A Fake Service Dog

Service dogs helps hundreds of thousands of people live their daily lives, but counterfeits muddy the waters and create chaos. That’s why Lon Hodge and his dog Gander are trying to educate people.

The Wise Women Of Tyler, Texas

In a small East Texas town, a small group called Pin-A-Sister is saving lives by going into local churches and asking women to promise to get a mammogram.

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?

The Healing Power Of Music Medicine

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

Black Disabled Girl Magic

Like everything else, disability is all too often viewed through a white cultural lens. That’s something Vilissa Thompson is tirelessly trying to change.

Q&As

2017: Our Favorite Interviews

Some of our favorite interviews of the year include a refugee who fled 2,200-miles by wheelchair, a rapper who has made a career rhyming about mental illness, and more.

“When someone tells you who they are, believe them.” This Maya Angelou quote–which took on new cultural currency in 2017–is the heart of Folks‘ mission: to listen to the stories of people living with health conditions from a position of belief and encouragement, with the hope that they will share their wisdom with everyone.

That’s why this year we sat down with over dozens of individuals from all walks of life, to ask them to tell us who they are in their own words. Here are just a few of the incredible people we interviewed this year. Let them tell you who they are.

Putting A Funny Face On Crohn’s Disease

Samantha Irby has made a career out of being witty about the unmentionable: what happens when you have problems on the toilet.

Tackling Death Over Coffee

Sociologist Jack Fong talks to us about the death café movement, in which strangers come together over coffee to come to terms with their own mortality.

Sympathy Cards Without The Saccharine

Sick of trite, cringe-worthy sympathy cards, cancer survivor Emily McDowell set out to show the likes of Hallmark how it should be done.

The Girl Who Remembers Everything

Born with highly superior autobiographical memory, Rebecca Sharrock can remember every meal she’s ever eaten, every book she’s ever read, and every word ever said to her… almost back to birth.

Inside The Rhyme Sayer’s Brain

Hot on the heels of the international Hey Kirby tour, musician and producer Aesop Rock talks to Folks about his lyrics, latest album, and life-long battle with mental illness

Moleskines & Memory

After a stroke at 33 left her with amnesia, Christine Hyung-Oak Lee turned to journals to make sense of her present, her future, and her past.

Smoky Eyes Don’t Come Easy

Steph Aiello’s elaborate makeup tutorials have made her an Instagram star, but the quadriplegic beauty vlogger says she had to fake it before she could make it.

The Cyborg With Lou Gehrig’s

At 36, Eric Valor was diagnosed with ALS. Now, he’s using technology to carry him where his body cannot.

What Women Need To Know About Heart Disease

A heart attack can look very different for a woman than it does a man. As a national heart disease spokesperson, Shalini Suryanarayana wants women to know the warning signs.

The Girl From Aleppo

Fleeing the war in Syria is perilous even when you can walk, but Nujeen Mustafa, who was born with cerebral palsy, had to make the 2,200-mile journey by wheelchair.

The Awesome Truth About Donating A Kidney

After donating a kidney to her husband, Jen Reeder founded Rock 1 Kidney to assuage common fears about organ donation. (Like: yes, you can still drink.)

Essays

2017: Our Favorite Essays

A werewolf father, a prophet from outer space, and what Selena Gomez can teach us about lupus: these are just a few of our favorite essays of the year.

When illness or disability has touched your life, one of the hardest things you can do is talk openly about it. Yet many brave people do, and by telling their stories, they help break the stigma surrounding health conditions. In 2017, Folks was privileged to provide a platform for dozens of amazing people–including a globetrotting fashion photographer, an international bird watcher, and the work-at-home Dad of a diabetes icon–to tell stories about what illness and disability have taught them about living life to its fullest.

Beautiful Girl On A Distant Planet

In the ’70s, my best friend seemed like a prophet and a poetess from outer space. But she had schizophrenia, and as her symptoms worsened, I failed her.

The Weight: Caregiver Fatigue And Diabetes

When your kid’s life is on the line, caregiving is a 24-hour-a-day job. What do you do when that job wears you down?

My Blade Runner Eyes

Photographer Nadya Lev was the toast of the fashion world, but it was only when she started going blind that she really learned how to shoot.

How Charlie Brown Helped Save My Best Friend’s Life

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

When Lupus Happens To You

In today’s celebrity culture, it’s all too common to compare yourself to the glitterati… but that cuts both ways when you have an autoimmune disease.
My Father The Werewolf

When I was a kid, my Dad taught me all about werewolves. Little did I know he was preparing me to understand his depression.

How Birdwatching Helps Save Me From Chronic Pain

‘Peace and patience’ are rare commodities when you live with pain… but a day spent birding is an extra day added to your life.

Doctors, Stop Gaslighting Women in Pain

For almost 4,000 years, doctors have been treating women in pain less seriously than men. That needs to stop. Now.

From Colorado With Love

After chemo, Rebecca Thomas thought she had met the perfect man. But cancer had profoundly changed what she needed from love.

Proof Of Life

I never thought I was photogenic. Then I started chemo, and learned to appreciate how precious photos of me and my family really were.

Profiles

2017: Our Favorite Profiles

A deaf NASA engineer, a quadruple amputee Mom, an autistic superhero artist, and more: 10 amazing people whose stories we loved in 2017.

At Folks, we believe that everyone has a story, and that everyone deserves to have that story told. That’s why, this year, we wrote profiles of over 100 amazing individuals, each of whom is striving to live their best life while simultaneously managing a health condition. From a couple young siblings tearing up triathlons to raise money to cure their fatal genetic disease, to an adventurous backpacker touring the world in a wheelchair… here are 10 of the best profiles we published this year.

The Illustrated World Of An Autistic Superhero-Artist

Ray Vickers’ one-of-a-kind comics, which feature teddy bear ninjas and sword-wielding bunny superheroes, have become highly-prized by art collectors. But for Ray, they’re a way of making sense of the world.

What Happens To A Marriage After Parkinson’s

Every marriage has its own dynamic, but what happens when a motor system disorder turns that relationship upside down?

Riding, Running, and Swimming To Beat A Fatal Genetic Disease

Justin and Lexi Clark aren’t just in a race against giant axonal neuropathy, the disease that could kill them. They’re in a triathlon.

The Beatles Of Braille

In the heart of Mexico City, a band of blind musicians has rocked crowds for over 30 years.

You Don’t Need Hands Or Feet To Be A Great Mom

Changing diapers, driving carpool… just a year after a near-death experience left her a quadruple amputee, Elizabeth Zweigel is already back doing what she loves most.

Charting Her Own Flight Plan

A hearing disability grounded K. Renee Horton from becoming an astronaut. But it didn’t stop her from realizing her dream of working at NASA.

Roughing It Around The World, On Wheels

For nine months, Eamon Wood backpacked alone across Europe and the United States, proving the hostel life isn’t just for those with the use of two feet.

A Viral Campaign To Bring Disability To The Toy Aisle

Toy Like Me is putting pressure on the big brands to make their toys as diverse as kids are.

From Coast to Coast, Living
Beyond Type 1

Type 1 diabetes almost killed Sid Sharma, but two years later, he’s tamed it and riding it all the way from New York to San Francisco.

The First Boy On The Sun

Born with a rare orphan disease–Fanconi Anemia–that mostly targets Ashkenazi Jews, Jacob Grossman is a ray of light to a family and community who couldn’t do without him.

Essays

How To Deal With Illness During The Holidays

Whether you're disabled or chronically ill, or have such a person in your life, here are some tips on getting through Christmas with everyone's health intact.

The Holidays can be a challenging time of year for anyone. That goes double for people with chronic illnesses, and often, those who love them. If you’re too unwell to work, money for gift buying, events, and food might be cause for worry. Getting out to events could be difficult. Dietary restrictions might rule the usual festive offerings off-limits. And all of this can be challenging to explain to well-meaning friends and family, who might not understand all of the unique pressures and challenges that come with being sick during the season.

But the Holidays are for everyone. Here are some tips on getting through Christmas if you, or someone you love, is chronically ill.

Remember Christmas Shouldn’t Be About Money

Let’s start with the elephant in the room: money. No one likes talking about it, but there’s no denying it–Christmas is expensive. From presents to travel to food, no matter what your situation, the holidays can create financial stress.

If you have a chronic illness or disability, it may well be that your financial freedom is limited. This is how it is for me, and I feel a huge amount of pressure to travel, attend events, and buy gifts I can little afford. The stress of that social expectation makes my illness worse. It’s a relief when friends and family let me know they don’t have those expectations. That in itself is a gift you could give someone with chronic illness: the acknowledgment that this time of year can be particularly hard on you, and that the only expectation they have of you is that you take care of your health and well-being first. Other seasonal obligations–gifts, visits, and so on–are of secondary importance.

Even so, this time of year is about giving, and the chronically ill want to give gifts too… even if they can’t really afford to. My solution to this is to make gifts that don’t cost much. I’m not a very creative person, so no one can expect amazing artwork or origami unicorns from me: but they will get something that shows my love. And after all, that’s what giving is supposed to be about.

Can’t Travel? Settle For A Card Or A Phone Call

December is a big time of year for travel. If your family lives out of town, or if your friends are throwing festive dinner parties, you might feel pressure to attend. But traveling with chronic illness is a challenge in itself, and the holidays add another layer of stress.

Although many people are understanding that chronic illness means sometimes you have to sit things out, at Christmas, there’s increased expectation you’ll make the effort to be there. There’s increased expectation you’ll stay out longer and later, and enjoy yourself more. It’s as if there’s a belief that the magic of Christmas somehow takes your illness away, and transforms you into someone who can keep up with Aunt Marg, who has been shaking her booty on the dance floor for a good six hours.

Unfortunately for both you and Aunty Marg, that isn’t true. The holidays don’t mean you are not disabled. They don’t mean you are not in pain, or fatigued. In fact, because of the other pressures around Christmas, you might feel worse this time of year, not better.

Again, take care of yourself first… and if you’re a loved one of a chronically ill person, let them know that’s your only expectation of them. Whether you’re giving one or receiving one, a handwritten card or thoughtful phone call to catch up is often just as a good as a visit, particularly when health is at stake.

Adjust Your Expectations

To get through the Holidays with your health intact, it all comes down to this: the best thing you can do is adjust your expectations, and manage everyone else’s, as far in advance as possible.

It might be uncomfortable, saying things like:

“Could we have Christmas lunch, instead of dinner? I get really tired in the evening, and I want to be able to participate.”

Or:

“I’m making gifts this year, it’s a really fun project.”

Or:

“Did you remember that my illness means I can’t eat <insert food here>? So let me know if you need me to bring my own food to the party.”

But it takes some of the sting out of the restrictions we’re dealing with, and it reminds people what our circumstances are, and that our needs haven’t changed just because it’s a special occasion.

And if you’re the healthy person who has a chronically ill friend or family member? It’s time to listen, and adjust your expectations too.

Being there and listening is one of the best gifts you can give. This can be a really isolating holiday for people whose situation means they can’t participate as fully as they might like. A visit from you might be exactly what they need.

When In Doubt, Ask

But, if you want to do something nice for a chronically ill person, ask them first! Everyone is different. Maybe they need an excuse to get out of the house, so heading out for some cake might be just the trick.

Don’t assume that their disability means they don’t want to attend social and family events. For me, the pain is much greater when I don’t receive an invite, than if I do and I’m unable to go. Chronic illness can fluctuate a lot, and on my better days, I might be right out there on the floor with Aunty Marg.

Ask your friend what they need to help get through the next few weeks. Maybe you can drive them to the mall to buy gifts. Maybe you can help them pack their bags to go and stay with family out of town. Or maybe you can help them cook, because what they really want to do this year is host their own dinner party.

Asking can also be the key when it comes to gifts. Yes, it may steal some of the element of surprise, but there will be plenty of things that your friend wants or needs that they may never get for themselves, and asking that question creates a lovely opportunity.

Some Gift Ideas

Finally, when it comes to giving gifts to a chronically ill person, remember that Christmas is a time for treats. While pill organizers or walking sticks can be useful gifts, many people don’t want to be reminded of their illness or disability when they’re opening presents. Steer clear of anything that could be construed as a “cure” or treatment. We get enough of that all year round, and while it is well-meaning, it may not be well received.

Here’s some quick ideas:

  • Delicious condiments or teas. Chocolate sauce, hot chocolate or a fresh tea blend paired with marshmallows and a nice big mug.
  • Hand or body lotions (check that they don’t have any allergies or sensitivities to scents!)
  • Bed linens or sleepwear – functional, because they probably get a lot of use, but also can be luxurious!
  • Heated or weighted blankets – cozy as well as useful
  • Digital gifts – especially helpful for those who spend a lot of time in bed. Subscriptions to streaming services or apps, credit for online games they might play, vouchers for the app stores or platforms

In the end, the best thing you can give to the chronically ill or disabled people in your life is acceptance and compassion. Accept that your friend has limitations, and be compassionate in how you interact with them. Give them love. After all, that’s what the season is really about.

Profiles

A Circus That Shows All Bodies Are Extraordinary

In London, a circus troupe made up of the disabled and able-bodied alike explores diversity in all its forms. Meet Extraordinary Bodies.

It’s Monday morning and the circus troupe is well into in the first workshop of the week. A young woman in a harness turns slow midair somersaults in the high-ceilinged brick studio. A drummer in a wheelchair idly spins a stick between his fingers between bursts of frenetic drumming, while a translator explains something in sign language to a group of performers. A large red hoop hangs in the center of the room, and occasionally a performer lowers themselves onto it as casually as they would an armchair and is hoisted towards the ceiling.

This is Extraordinary Bodies, a London-based circus company that delights audiences while challenging conceptions about what disabled people are capable of. The troupe is made up of a revolving group of able-bodied and disabled performers, musicians and artists, and aims to represent the diverseness of society. Some performers are veterans: one has sung with the National Opera, while some are just starting their career. Today they’re practicing in a studio a stone’s throw from the venerable Old Vic Theatre.

For the last few weeks, the troupe’s been workshopping around the UK, working with communities to share circus and music skills while exploring the theme of worth for their next show: What am I worth?

Performer Sarah Hoboult says the theme is a timely one. “It’s something that needs to be talked about at the moment. We have divisions about what people are worth that are scary and sad. Finding the value in ourselves is one of the hardest things to find in your lifetime.”

“Finding the value in ourselves is one of the hardest things to find in your lifetime.”

Sarah is an Australian Paralympian-swimmer-turned-circus performer who has traveled from Sydney to workshop with the group, helping performers develop their acts and make the show accessible so everyone can engage with its themes.

The thirty-four-year-old was born with Hallermann-Streiff syndrome, which affects bone structure. She’s also legally blind. Standing at around four foot seven, the performer says her unique look attracts attention, which she embraces onstage.

“The world isn’t used to seeing people like me. People remember me in a performance because of how I look. I enjoy that, and I can’t shy away from that.”

Sarah Hoboult, who was born blind and with Hallerman-Streiff syndrome, practicing some of her acrobatics with a partner.

Sarah says lack of sight gives her an advantage in her specialty, which is aerials and acrobatics.

“Circus is very tactile, you’re always holding an object: a trapeze bar, a hula hoop or another person’s body. A poor-sighted person has an advantage as we can read things quicker. The goal is to move with your feeling. I know how to feel, so I can create a more visceral experience for the audience.”

Circus is very tactile, you’re always holding an object: a trapeze bar, a hula hoop or another person’s body. A poor-sighted person has an advantage as we can read [these] things quicker

The intuitive performer says rather than use her distinctive look to confront, she prefers to walk alongside her audience, guiding them on a journey. “I know that I’m noticeable onstage and that people are challenged by that. When I first get on stage people say, ‘huh? Who is this person?’ So I will start with a sitting position, or I’m still for a minute, and it gives people a moment to take me in.”

Offstage, her appearance means people can have low expectations of her, or think she’s fragile, or sick. “I’m nothing like that, I’m very strong. One review of a performance I did started out saying, ‘who is this frail, diminutive person?’ But as it went on it was, ‘oh my gosh, she is really strong and skilled.’”

Sarah describes herself as “natural born freak,” and a “carnie”. These terms that recall latter-day freak shows might seem pejorative. However, Sarah’s keen to reclaim them. “It’s important to own your past. The philosophy of the freak show is to use what you’ve got, which is integral to circus.”

Sarah says the world is crying out for diversity, and that audiences are ready to embrace differences. “There’s a deep sense of urgency to tell our stories, we want to get ourselves out there. Art has the power to shift the world.”

“One review of a performance I did started out saying, ‘who is this frail, diminutive person?’ But as it went on it was, ‘oh my gosh, she is really strong and skilled.’”

Overhead, the woman in the harness stops her slow somersaulting and reaches for a dangling microphone. “Eye color”, she speaks into it. “Height. Languages spoken.” There is a flurry of signing and performers arrange and rearrange themselves into order, exploring their perceived worth: the value society places on them according to these attributes.

Drummer Jonathan Leitch is new to the circus world. Assessing his own worth has been “complicated”, and something he’s been mulling over since he started working with the troupe. “I started with a question mark … but working [with Extraordinary Bodies] has opened my eyes. I have ended up thinking my worth is happiness: of others, of myself. That’s what everyone’s worth, how happy you are and everyone else is.”

Extraordinary Bodies practices.

Jonathan grew up drumming on every available surface, and after a lengthy session where he drummed along to the Queen song We Will Rock You all over the house, his mum cracked and offered him lessons. Since graduating university, the twenty-three-year-old works as a sound engineer, composer and drummer for theatre productions. He got into theatre almost by chance after a suggestion from one of his lecturers, and fell in love with the heady, often chaotic world of live performance.

Drummers are usually on the edge of the action but working with circus performers often places Jonathan right in the centre. “In one session, we had to get one person from A to B without touching the ground, I just planted myself right in the middle of that, so I had to make sure this person was off the ground while I was frantically playing the drums.”

“Working [with Extraordinary Bodies] has opened my eyes. I have ended up thinking my worth is happiness.”

Jonathan’s been paralyzed since birth, when an ischemic event interrupted blood circulation to his spine. During day-to-day life, Jonathan says he “just gets on with it”.

“I’m very independent, my upper body is very strong and I just get on with everything.”

Like Sarah, he finds that whether he’s willing or not, he is often faced with challenging people’s perceptions. “I am always just trying to, maybe without even realizing it, change people’s depictions of me. I just realized this recently but I look more serious when I’m walking down the street people don’t ask me if I’m okay.”

Questions are fine, but don’t expect a polite reply if your opening remark is about his disability, Jonathan says. “Curiosity is normal. Sometimes I’ll stare at someone with the same disability symptoms as me. But I don’t like the first comment to be, oh, you’re disabled. I’m not weird, I’m just like everybody else.”

Jonathan believes perceptions about disabled people and their capabilities are changing. “The views are still there of disability being a negative thing, but from being at school and seeing kids now, the adults will look at me but the kids don’t react. Maybe it’s more inclusive or you see more [disabled people] on TV so people know it’s just a part of life.”

His experience working with circus performers has been eye-opening, especially its potential for physicality. “All these art forms coming together in such an open platform is amazing. You can do what you want: fly around, or do this do that. It is so inspiring to work and create alongside that.”

Working with the circus has left him thinking about exploring more movement within his drumming. “Throwing sticks in the air, playing with drumsticks on fire, or stick tricks, I’m always open to making things bigger and better.”

Jonathan says drumming is a way to come out of his shell. “I can be shy person in real life, but onstage behind a drum kit, I can be expressive and as loud as I want. It’s such an awesome feeling. Having the ability to make something is a great feeling.”

In the centre of the studio the performers continue to discuss their worth. “Number of sexual partners,” someone says. “Skin color,” signs another, hands flying emphatically. Someone cracks a joke, and laughter rings loudly around the studio. The drums start up and the performers drift into smaller groups to practice circus tricks. Celebrating the bodies they were born with, the circus troupe spins, twists and tumbles its way into a performance that’s