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Essays

Coming Out Of The Chronic Closet

As a chronically ill teenager entering my freshman year at college, I'm learning that it's time to stop hiding who I am.

I was around eight when I realized that being sick wasn’t the norm. Before that realization kicked in, I thought every kid had as many doctors as I did, that they were in the hospital so much they too considered it a second home. I thought all kids knew what barium tasted like because of their all too frequent diagnostic tests. But when the realization hit that I was different, it hit hard… and when the other kids found out, it was accompanied by bullying.

As I entered high school, I vowed to do everything I could to hide my illnesses, which include Fibromyalgia, Postural Orthostatic Tachycardia Syndrome, and Raynaud’s Disease. I decided to blend in, be “average.” My parents approved. They saw what the years of bullying had done to their daughter–the constant sadness and depression that had crushed her spirits–and wanted it to stop, even if it meant hiding who I was.

But then one day I was rushed to the ER; I had stopped breathing in class.

Yeah, try covering that one up.

Then one day I was rushed to the ER; I had stopped breathing in class. Yeah, try covering that one up.

The aftermath was alright, though. My friends handled it pretty decently, offering support and sending me encouraging texts before diagnostic appointments. But then, I was told that cancer might have been why my breathing stopped that way. It actually turned out to be Recurrent Subacute Thyroiditis, a condition so rare that most doctors will never see a case in their lifetime. But before we knew that, cancer was on the cards, and the possible diagnosis spun me into a hurricane of anxiety.

That night, I poured my heart out in a message to one of my very close friends, Noah, who lived out of state. I didn’t tell Noah everything, but I opened up to him more than I had to any other friend in years. He had bipolar disorder, and had even been hospitalized for treatment, so I thought he would understand.

He didn’t. He ignored me for months after that. When I finally saw him again, he pretended he’d never gotten my messages… but if that was true, why had he cut contact with me? I heard him loud and clear: if we were going to be friends, I would have to go back into the “chronic closet.” My friends could only accept me if I lived behind the facade of good health, but if I asked them to go through something they were not going through themselves, they would be gone.

So I pretended to be healthy. I swallowed my anxiety over the possible cancer diagnosis hanging over my head, and suffered with it silently. Things slowly went back to normal. My classmates slowly forgot about the day I almost died in front of them, and soon, it was like nothing had ever happened. I was just me again, my sickness pushed aside.

But the sicker I got, and the more chronically ill friends I made, I became more and more frustrated about having to hide this massive part of me. I realized it wasn’t fair to have to hide who I was and what I was going through just so my supposed able-bodied “friends” didn’t get their mellows harshed.

It wasn’t fair to have to hide what I was going through just so my supposed able-bodied “friends” didn’t get their mellows harshed.

What really shifted my attitude was being diagnosed with Celiac Disease in September, 2015. After I received the diagnosis–yet another one in my relatively short life–I once again pondered the million dollar question: how long could I hide this illness from my peers? Because the social life of a teenager is pretty much all centered around meeting up and eating food. My diet would give me away.

I kept my Celiac Disease secret for two months. Compared to the years I had spent closeted about my illnesses in the past, it was a breeze. But something had changed. I had reached my tipping point. I was tired of hiding. My true friends–my chronically ill friends, and even a few healthy ones–had shown me there was nothing to be ashamed of. Why was I putting so much effort in hiding?

So I opened up about my Celiac Disease. And sure enough, at my school, I was a pariah again.

Suddenly, instead of being asked about my weekend or the latest homework assignment, I was being grilled about what I could or couldn’t eat. At first, I was happy to educate people, but it soon became clear that these seemingly innocent questions had a mocking edge. Soon, the commentary started: kids told me they’d kill themselves if they couldn’t eat gluten, that they felt just awful for me, that maybe I should stop being so dramatic and just try a bit… whats the worst that could happen?

As my group of friends shrank, the people who really cared about me became worried about me again. They told me it was all well and good to advocate for myself and others because of my health issue, but it had to be “able-body approved.” Be as vague as possible about the grisly realities of being sick. Fluff it up and make it pretty. Be inspiring, but not different.

Even though my social group shrank once I came out of the chronic closet, the friendships I kept grew and deepened

Again, I can’t fault them for that. But even though my social group shrank once I came out of the chronic closet, the friendships I kept grew and deepened. I had friends research Celiac Disease, and who would bake for me, sterilizing their kitchens beforehand to avoid cross-contamination. I had friends who drove eight hours to visit me in the hospital, friends who sent letters of support when I had to travel out-of-state for treatment. These people were my real friends, the ones who mattered; being open about who I was had filtered all of the fakers out.

Now, as I write this, I am in my first week of college at a university 500 miles from home: a university that none of my friends are attending. I find myself in the same situation that I was in four years ago: should I be open about my illnesses? And if so, when?

I wish I could say I knew the answer to this question. I know what my most protective loved ones would say: to keep quiet, go back in the closet, and live my life as a normal student. Don’t do anything to stand out, and people will have no reason to reject you.

But things aren’t that black and white. It is not just about choosing to be open or being closeted: there’s a massive grey area in between the two, and in that gray zone, it’s my choice where I stand. I want to be open. Maybe not entirely, but I’ve seen what openness can do for my friendships. It creates something beautiful: community.

I’ve seen what openness can do for my friendships. It creates something beautiful: community.

It’s first week of college, and college is supposedly where people come into themselves. Here, I’m going to experiment with being open about my conditions, because I’ll tell you what: there’s nothing more terrifying than slowly molding yourself into someone you’re not just for the sake of pleasing the largely able-bodied world. I’d take being open and facing rejection a thousand times over going back in the chronic closet.

Because after all, in the end, the people who leave don’t matter. They were never the kind of people you wanted in your life anyways. It’s the people that stay with you and grow with you who will become your family.

And one day, I hope the world will see this too.


Photo by Dar’ya Sip, published. under Creative Commons license

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.

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

 

Essays

A Personal Dictionary of Breast Surgery

When Erin Ollila went into hospital to have a lump in her breast removed, the words she focused on weren't necessarily the same ones her doctors were using.

Lobular

When you think of the lump you found in your breast, you think of a peanut M&M. But the ultrasound techs describes it as lobular. You don’t know exactly what lobular means, but you assume oval, and that is when you decide the foreign body inside of you is the identical twin to the yellow M&M in the commercials. You wonder if the lump has white eyes and white legs, too.

But what if lobular doesn’t mean oval? What if the lump isn’t shaped like a peanut “M&M”, but instead it is disc-shaped, like a Milk Dud? You like the way Milk Duds feel as you chew them and the caramel slaps and sticks to your teeth and the chocolate soaks up your saliva. Or maybe it’s curved, like a lima bean. You never liked lima beans; or most beans for that matter. Or maybe lobular means perfectly round in all directions, like a jawbreaker, or a gumball.

Or maybe lobular means none of those things; maybe lobular just suggests circular. Maybe lobular is like a chewed up piece of gum flattened under your shoe, taking the shape of whatever presses against it.

Slurp

The lady checking you in at Registration slurps her coffee from a small hole on the plastic lid. “Mmmm,” she says, “That’s good, but it’s too hot.” You think she is talking to you until a woman appears behind her slurping a Starbucks iced coffee up her own straw. “That’s why I always get mine iced,” the new woman says.

All you can think as you watch them is Slurp, slurp, slurp. It’s as if they’re mocking you.

The lady helping you shakes her Pandora bracelet so that it falls to where her wrist meets her hand, just as you do when it creeps up your arm. When you’re nervous, you roll your beads between your fingers, remembering the times Ryan gave you the charms.

You finger your left wrist, but it doesn’t make the bracelet appear. If your bracelet were on right now, you’d probably have the Together Forever charm or maybe the Best Friends charm or maybe the hearts rolling back and forth between your thumb and your finger. But you aren’t wearing your bracelet.

Cubbyhole

An elderly volunteer with a perfect pale-brown and gray French twist walks you to Prep-Op and points to the end of the hall. “You’ll be in room 15,” she says, “and Susan, who’s standing right there, will be your nurse.”

Room 15 is not a room; it is more like a preschool cubbyhole, where the children stash their blankets for naptime. The “walls” are made from pulled curtains—although you did luck out since you’re the last cubbyhole in the row. You have one solid wall of your own in Room 15.

Susan, your nurse, makes a list of everything you’re wearing and the items you brought with you: Black pants, gray shirt, purple sweatshirt, pink socks, black sneakers, multicolored messenger bag, two credit cards, a driver’s license, a notebook, two books, a cell phone, hair elastic, two bobby pins, a pen.

You ask her if she needs to know the color of your bra and underwear since she marked the color of the rest of your clothing and she says, “Oh, no. No one ever complains about lost undergarments,” and then writes down “undergarments” on the form before passing it to you for a signature.  Why does a pen or bobby pins get jotted down, but not your white bra and green undies?

She tells you to pack up your clothes and everything else in the two hospital-issued, plastic bags on the bed. She leaves so you can change into your gown, not the type you wear at a ball, but the kind that opens in the back and just about everywhere else as well. She returns with a Pepcid for your stomach. You take the pill with the smallest sip of water, even though your stomach feels just fine, as you don’t want to get the urge to pee before surgery.

Uncooked Spaghetti

Susan gets the IV ready to put in your hand. Why can’t she put it in your veins in the crook of your arm? You prefer the IV in your left hand, so you can write in the meantime, but she’d rather not do that because your surgery is on your left side. You expected the tip of the IV to be the same size as a normal needle, but it’s not. It’s much bigger. You have good veins, or so medical professionals have told you, so she shouldn’t have to dig around in your hand for an entry spot. You don’t want to watch the IV go in, so you look away, only to look back right as it punctures your skin. That is too big, you think, it’s like she’s stuffing uncooked spaghetti into your veins.

“What’s in this IV,” you ask Susan as she begins taping the needle and cord onto your hand. She loops the cord between your thumb and forefinger and tapes it tighter. Now that it’s not wobbling around, it is more comfortable than you expected.

You expected the tip of the IV to be the same size as a normal needle, but it’s not. It’s much bigger.

“Oh, just some antibiotics for the surgery,” she says and you begin to see a few drops move through the IV line and then it clears and is filled with liquid. It’s been almost a minute since the spaghetti-sized needle entered your hand at the bottom of your thumb and you feel a slow cool rush through your arm as the antibiotics enter your body. You hope the antibiotics don’t give you a yeast infection and make a mental note to take some acidophilus and eat more yogurt.

Turns out, writing with an IV in your hand is not an easy feat. You decide that you’re going to try writing with your left hand—another hard feat. You write in your notebook “willing myself to write with my left hand,” as if the power of intention will suddenly turn you ambidextrous. Madden’s kindergarten handwriting is much better than what you just scratched along the paper. The sentence takes up about three lines on the page.

Grouch Sandwich

A man in blue scrubs walks into your room, doesn’t make any eye contact with you, and announces himself as Something Kearsavage. You assume, and hope, he said Doctor Kearsavage as he begins to talk to you—still looking at the floor—about what type of anesthesia he plans on giving you. He asks you when was the last time you ate something. “Around 8 or 9 last night,” you reply.

“What was it that you ate at 8 or 9p.m.,” he asks and sits in the chair on the side of your cot, staring with intent at the blank lines on your chart.

Does he really need to know what you ate last night? Your evening snack was quite a smorgasbord and every time you brought a new treat into the living room and noticed Ryan eyeing your selections, you proclaimed, “What? It might be the last snack I ever eat. I’ve got to have it all.”

There’s been a slight pause since he asked the question, so you finally answer: “Some Sour Patch Kids, a Rice Krispies treat, and a Popsicle.” For the first time since he’s entered your cubbyhole, he looks up at you blank-faced, blinks two times and then looks back at your chart to write those answers down.

Some Sour Patch Kids, a Rice Krispies treat, and a Popsicle… What? It might be the last snack I ever eat.

“What is THS Syndrome?” he asks you.

“I don’t know.”

“What do you mean you don’t know,” he asks, looks up at you for a second and then back down to the paper. “You have it. It’s written right here.”

You first urge is to take out your cell phone and Google THS Syndrome, but your cell phone is in your messenger bag, and your messenger bag is in the hospital plastic bag tucked underneath your cot. This information worries you. It is written in handwriting on a mostly printed chart, and you wonder if the results from the pre-admissions blood test indicated some new, horrible disease you may have.

“I have no clue what that is,” you reply, “but I’d really like someone to check on that before I go into surgery.” He nods, stands up and walks out of your cubbyhole. A few minutes later, her returns to tell you that it was TMJ Syndrome—temporomandibular joint disorder—which you do have, and you make a mental note to Google THS Syndrome when you get home.

You feel very uncomfortable with the fact that your anesthesiologist’s last name has the word savage in there. You aren’t sure you want a savage putting you in a dreamland. You’ve written in your scraggily, loose, right-handed handwriting, “he probably ate a Grouch Sandwich for breakfast.” You’re not sure what a Grouch Sandwich is, and why he’d eat it for breakfast and not lunch, but apparently that is what you’ve decided he devoured this morning.

Imaging

You’re worried about the “imaging” you need today. During all your phone calls yesterday, the receptionists and medical assistants and nurses you spoke to kept saying the word “mammogram.” You do not want a mammogram; your poor breast has suffered enough. Your nurse Susan wheels your cot around the hospital to Radiology, which seems quite strange seeing as you can walk there yourself, although everyone would see your backside. Susan parks your cart along the wall in Radiology and you hope she dropped you off at the right place because no one comes for you for two or three minutes.

A young ultrasound technician comes to get you and you realize it’s the same girl—is her name Brandy? —who was in the room during your biopsy. You’re worried less now; somehow this makes a difference. There is another female technician in the room, and they explain the procedure to you. You get an ultrasound. No mammogram! Unfortunately though, they plan on inserting a wire into your breast to mark the site of the lump for surgery. You didn’t plan on getting any new hardware today, but you prefer they take out the correct specimen, so wire it is.

You feel like an alien version of Madonna.

The doctor comes in who will be inserting the wire and he is relatively handsome. You don’t show your boob to that many people, and you feel strange having a slightly-handsome guy touching it—no less inserting a piece of metal into it—when you’re in a relationship, but apparently this is normal here because no one seems the least bit perturbed. Plus, he isn’t that handsome. It’s more just a mild handsome. Everyone else who’s touched your boob in the history of these lump appointments has either been an old male surgeon with minimal personality or women who seem the least bit phased over your mammary glands. Probably because they have their own boobs to manage.

After Minorly Handsome Doctor inserts a wire horizontally into your left breast he announces that he would like a plastic cup. Brandy, your new favorite ultrasound tech of all time, asks him to repeat himself, because she too seems confused about why he needs this. You look down. There is about three inches of wire just dangling out of your chest, bouncing a bit in the air. “You’ll see,” he says. She leaves the room and reappears a few minutes later with a plastic cup. He takes it, places it over the wire protruding from your breast and asks for tape. Both girls are looking at him blankly, and then the tech whose name you don’t remember—although it may have been Amanda—passes him the tape. He pulls out long strips and tapes the cup to your chest. “Tada!” he says. “Just in case you move your arm and knock it out of place.”

You feel like an alien version of Madonna.

Alone

You miss Ryan; you feel uncomfortable in the silence of your cubbyhole where you can watch all these people. A woman walks by with her husband, or maybe it’s her brother. She is holding the back of his hospital gown closed as he walks in front of her. She looks into your cubbyhole, notices you are alone, and smiles with that sympathetic, pity kind of smile. You did this to yourself. Ryan would have been here waiting with you if you weren’t so adamant he stay at work. “It’s just a small procedure,” you said to him. “There’s no need to take the whole day off when you’re probably going to only be allowed in the pre-op area for a half hour or so.” You always need to be the strong one; you always end up alone.

Contestant

It must be all the Jeopardy you watched with your grandmother as a child. When someone asks a question, you pull the relevant words out and feel the urge to answer as quickly as possible. It’s as if you’re listening closely, with a buzzer in your hand waiting to respond with your answer—just not in the form of a question.

Your doctor walks into your cubbyhole in Pre-Op with your chart in his hand. “How are ya doing,” he says with about as much enthusiasm as you’ve ever seen him muster. He must be excited to cut. You’ve heard it’s like a drug—cutting that is—that some surgeons get high off the rush.

You’ve heard it’s like a drug—cutting that is—that some surgeons get high off the rush.

“So, you still in a lot of pain?” he asks, and your contestant-like brain kicks into gear as you nod your head and answer, “Yep,” at the exact same time that he says, “back there,” and points toward his rear end.

Hold up.

Back Where?

Did you just acknowledge that your ass was in pain? Does this man even know what surgery he’s doing?

You don’t say anything, partially because you just don’t know what to say at a time like this, and partially because you don’t want to embarrass your doctor. If he mentions your ass again, you’ll remind him your surgery is on your breasts, not your derriere.

Notes to Self

You’ve watched every season of Grey’s Anatomy except the current one. You know all the things that happen in hospitals. Your anesthesiologist could be drunk. A gunman could go on a killing spree while you’re in dreamland. Doctors could perform the wrong surgery on the wrong patient. You watch a lot of movies. You read the news. People go under anesthesia all the time and wake up with a case of amnesia. With your luck, this is bound to be you in a few hours. You’ve learned that writing with your left hand is no longer an option, but you can maneuver the pen around the page if you grip it very loosely with your right hand. You write in your notebook:

“If you (and you write “Erin” on top of the word you, just in case you don’t remember your own name) wake up from surgery and don’t remember anything like in the movies—I just want you to know that you love Ryan with all your heart and Madden and your parents, brothers, and best friends. Just in case. ☺” You neglect to mention your sisters-in-law and nieces and nephew. And even more importantly, your own dog, Fenway.

V-Drug

When it is time, a woman whose shoes and hair is covered with blue surgery caps comes into your cubbyhole. She has kind eyes and while pulling your IV line out from behind your back, informs you that she is the nurse anesthesiologist and that she was going to give you a sedative and bring you into surgery. She says the name of the drug, something that started with a V and was similar to Valium, but you forgot about as quickly as she told you. The only think you remember her telling you was that some patients say they feel a mild burning sensation once the V-Drug gets into their system. Then she begins to wheel you away.

High

Here are the thoughts you remember thinking from the time you leave your cubbyhole until you fully go under from the anesthesia:

Where is the burning feeling? Didn’t she say I’d feel a burning sensation?

These people must be so strong to wheel around the patients all on their own.

I feel the same as I did ten seconds ago.

This is the operating room?

Where is everybody?

Ohhh, I feel a warm sensation. It’s definitely not burning, but I do feel all warm in my veins.

What are they putting on my lower legs? Is that massaging my legs? Is someone massaging my legs?

I kindaaaaaa get the whole addiction thing now. This doesn’t feel so bad.

You feel a big bit high, and a tiny bit nervous. The nervousness is catching up real quickly with the high, and you realize that in a few moments you will be in a dreamland. The same dreamland you’re afraid you won’t wake up from, and that is what scares you. Look around, you think, feeling a sudden urge to take everything in. The items in this room might be the last things you ever see. Everything in this room is disappointing. Sterile. You’re on your back, buzzed off the anesthesia high, staring at the ceiling fan—or was it just the lights on the ceiling—when you notice the initials on what you appear to think is a fan: ALM.

ALM. You twist those words around in your mouth even though you don’t open it to speak. ALM feels familiar. You floating deeper in your buzz and the fan—or light—starts to get blurred and fuzzy. Aaaaaa Llllllll Mmmmmm, you think. ALM stands for Amy Louise Melo, your best friend since kindergarten.

This is how you know you’ll be okay.


Top photo by Mike Licht, used under Creative Commons license.

Essays

How A Comic Book Disease Helped Me Come To Terms With Lupus

When it comes to getting people to treat sickness seriously, a fictional disease can sometimes be more powerful than a real one.

My cousin’s daughter is a willowy redhead with a long neck like mine. She has come to visit me with her husband and two little girls.

I notice he’s a little hands-off as a parent, letting her do all the heavy lifting. She makes breakfast for the kids, fixes their lunches, makes dinner and bathes them at night. He doesn’t.

She and I have a moment alone. Sitting over a glass of wine in my dining room she tells me that she has ulcerative colitis. Boom, I think, strike three of deadly autoimmune diseases in our family. Her little brother had another autoimmune disease that killed his liver and thus him, before he was 30. She is 32.

When I was 25, doctors told me that lupus nephritis would kill me before I turned 26. My own antibodies were mistakenly attacking my healthy kidneys and couldn’t be stopped. A miracle saved me, but that’s another story; the point is, there’s a family tendency towards autoimmune disorders, and as she sits in front of me, I realize I need to get her to focus on saving herself before her disease flares.

It could be her life.

She has to have less stress. She has to take care of herself and allow herself to be taken care of. She can’t be a martyr. Her husband has to step up. Neither of them are treating this seriously yet, I can tell. She needs to advocate for herself. How can I break through to her before it’s too late?

So I tell her a story.

Brenda Starr dreams of the mysterious Basil St. John.

When I was growing up, I always wanted to be Brenda Starr, the red-headed female reporter out of the comic strips.

When I was growing up, I associated myself with another willowy red-head, Brenda Starr, the fearless female reporter out of the comic strips. Brenda was in love with the mysterious Basil St. John, who had a disease that needed the nectar of a black orchid to keep him alive. If he didn’t fly back to the jungle every so often to get more of his black orchid serum, he would die.

It wasn’t always opportune for him, or for Brenda, who eventually married St. John. If you didn’t know he was sick, Basil’s sudden disappearances could seem selfish; likewise, flying back to the jungle constantly could be inconvenient for both of them. But his life was on the line. He needed to take care of his health first, and his health required Black Orchid nectar.

I tell my cousin’s sister that I have always tried to treat myself as if I had the Black Orchid Disease. Then I tell her countless little anecdotes about the ways my life had changed, and the many small sips I had to take from my own vial of Black Orchid serum, since I first found out I had an autoimmune disorder.

I have always tried to treat myself as if I had the Black Orchid Disease.

I tell her about the last time I went with friends to a concert, and had to have them drop me in front while they walked back from parking. I tell her about how sometimes the fatigue coming home from work is so bad that if I can’t get a bus seat, I’ll take a taxi; it’s cheaper than kidney failure.

Sip sip.

I tell her about how, when the joints in my fingers swelled and couldn’t type as well anymore, I went to my boss and asked him to get me better equipment. I tell her about the time I couldn’t grip the doorknob hard enough to get out of my New York apartment, and had to call the super to let me out; because of my Black Orchid disease, I always now keep the door partially open all the way.

Sip sip sip.

Basil St. John needed to return to the jungle periodically to refill his vial of Black Orchid Nectar, which was the only thing keeping him alive.

I explain to her that because of my prescribed steroids, I always have to walk in the shade. I wear a hat all the time and use an umbrella in the sun. Foods I love are now off-limits. My face sometimes puffs up, my clothes don’t fit, and the tiny hairs on the back of my neck grow out in corkscrews, even though my hair is straight.

Autoimmune diseases are no joke. They require vigilance.

These are the symptoms of my own personal Black Orchid Disease. Hers will be different, I tell her, but she needs to keep her vial of serum ready. Even though she still feels fine and still looks beautiful, she will have to change her life to stay alive. Because autoimmune diseases are no joke. They require vigilance.

When she said her goodbyes, I wasn’t sure she understood what I was trying to say. But several weeks later, she mentioned the words “Black Orchid Disease” on the phone. Later, I saw an Instagram she posted of her husband folding laundry with the girls, something he’d never done before. The next time they visited, she left the dinner table to put the little one to bed and when she came out she said to her husband, “Your turn.”

I smiled at her. She got the memo and so did he.

Essays

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.

Diagnosis plucked me from dating life in one efficient swoop. One moment, I had been a single, fit, forty-something woman; the next, bald and undateable.

But after a grueling slog of surgeries, chemo, and radiation, I was ready to rejoin the desirable. Each day I assessed myself in the mirror until I transitioned from cancer patient to chic, short-haired woman. The moment my hair was a believable pixie cut, I put myself on Tinder.

I liked the simplicity of Tinder. Yes, no. No, no, no. I even let friends swipe for me at a party. Everyone erupted in cheers when we got a match.

His profile showed off a broad smile and multiple action shots. A yoga pose on a mountain top provided the perfect excuse to invite him to join my sunset practice. He was in Richmond on business, scheduled to return to Colorado within a week.

One evening turned into five. We walked all over the city and traded stories. On the top of my mind was the experience of being in treatment. He asked what chemotherapy was like. I wasn’t sure how to answer so I asked a cancer friend how she would describe it. “It feels like you are crumpling in on yourself.”

That sounded right. It was a relief to be able to speak openly about the disease that was still a shock to me.

It was a relief to be able to speak openly about the disease that was still a shock to me.

The day I signed my chemotherapy waiver, I was crying so hard the nurse ushered me into a private room until I calmed down. The list of potential side effects was four pages long, front and back. A third of that list came to pass. My private horror show. Even my family squirmed at the details.

I had opted for a lumpectomy and radiation instead of a mastectomy, so they were still intact. Even so, I was worried about presenting this post-treatment body. Before we were intimate, I told him the body I had been so proud of now had multiple scars from surgeries. The scar from my port was raised and angry, almost cartoonish with jagged edges. It still hurt to the touch.

He stopped as we walked to tell me it wouldn’t bother him if I had had the whole breast removed.

“Without reconstruction?” I clarified.

Yes.

I was stunned. It never occurred to me a man might want me without my breasts.

Time together felt graceful. Our quirks didn’t irritate or put each other off. One evening we walked to three different restaurants, and then came back to the original one in an effort to make sure our meal conformed to his dietary ethics. He apologized, but I didn’t mind. It amused me that for once I wasn’t the fussy one.

Much to our mutual surprise, we slept well together: the pinnacle of middle aged compatibility. Up to this point, I was practically evangelical about sleeping apart from my partners. Snoring, different schedules and the firm belief that cuddling and sleeping were separate activities had me singing the praises of everyone returning to their own beds. I was secretly relieved to be wrong.

It never occurred to me a man might want me without my breasts.

During the first few months of treatment, I ached to have a partner who could rub my back at night. To fall asleep,  I would place a pillow behind me and close my eyes. The available support didn’t include tucking me in at night or I didn’t know how to ask. Facing my empty bed at the end of each day did nothing to soothe my anguish. My Colorado friend happily held me, rubbed my back and reached for me in the middle of the night.

After one visit, I texted: “The bed was lonely without my sleeping companion.”

He wrote back, “I love that job.”

A month later he invited me to join him for his annual kite surfing trip in the Outer Banks, NC. I pretended to think about it, then jumped at the chance. We drove in the direction of an oncoming hurricane and found a deserted resort. The hotel looked like it was one season away from being swallowed by the ocean, our balcony listing into the surf. The room was moderately appointed with an uncomfortable bed and a carpet filled with sand. I felt lucky to be there with him.

During the day, we roamed the empty beach, soaking up brief bits of sunshine. In the evening, we silently held each other while watching the roiling ocean, sometimes pausing to look at the stars. One night, he stood naked in the doorway, facing the wind and lit by the moon. I watched from the bed until he reached for me to join him. For the first time in my adult life, I heard music when I looked at a man. I scolded myself for such foolishness, but happily took his hand.

For the first time in my adult life, I heard music when I looked at a man.

On the third day,  he set out on a tiny surfboard and a giant kite. At age fifty-two, he handled the sport like a natural, delighting me with jumps and flips. I felt like a highschool girl watching her boyfriend on the sidelines. It seemed particularly delicious that I got this treat for the first time in my forties.

That night, we sat quietly parked in a flooded lot, watching the rain against the glow of a lighthouse. The sounds of the water and frogs amplified our silent intimacy.

At his suggestion, we capped off our blissful five days by eking out a few more minutes sitting side by side in a restaurant booth. We held hands and chatted. I felt peaceful, even with our imminent parting.

With a brief hug and a kiss, he returned home to Colorado, I to Virginia, and radio silence. Our connection hung in the air without acknowledgement or nurture. The message was clear: I wasn’t invited into his life.

The distance and his natural reserve made it impossible for me to understand what this romance was. I intended to give the relationship the space to grow. Instead, there were intense visits followed by no accountability.

The ambiguity of our arrangement made my heart ache. I wanted to be the kind of woman who barely noticed his withdrawal because my life was filled to the brim. Instead, I writhed around each time contact began trailing off. Despite wanting to be patient with him, I was unable to get comfortable with the periods of silence.

The message was clear: I wasn’t invited into his life.

Out of the blue, he texted he could make time to stay a few days. I agreed to a fifth visit, setting my concerns aside. In person our connection deepened, slipping back into the ease from our trip. We made the most of two nights and one long Sunday. I reveled in the simple joy of seeing his face across the pillow or holding hands as we drifted off to sleep. We strolled, ate pizza, explored a video store marveling that such a thing still existed. The activity didn’t matter, time together was the real pleasure.

Monday morning, he departed with an affectionate embrace. There were dribs and drabs of communication, and then back to silence.

When we were together, I liked to comment on his adventures by telling him he was his own man. I meant it in other ways as well. I knew that someone who loved him had to either accept setting out on his course, or stay put until he returned. I had a lifetime of practice at accepting less on the grounds that something was better than nothing. Still, it took every ounce of my personal conviction to part ways. When I finally heard from him again, I explained why I couldn’t keep going and he ever so gently set me down.

Rebecca Thomas.

Recurrence looms large at the conclusion of treatment. The patient is tossed back into their lives, everyone crossing their fingers. Every ache and pain results in a searing fear. At the onset of treatment, a few of my doctors gave me their personal cell phone numbers. The one and only time I called was a Sunday a few short months after the last of my treatments. I had a persistent pain in my side and was certain it meant something more ominous. I sat paralyzed on my couch for hours until the fear subsided. It turned out to be a muscle strain.

Before diagnosis, I held the illusion of life stretching before me. It was just a matter of time before love came my way. The reality was more sobering. As we parted, he wrote: “You are an amazing woman with a beautiful journey ahead”. A breezy sentiment from someone who still believed there was plenty of time for life to unfold.

Diagnosis brings hardship, but also clarity. After getting final confirmation that this lump was in fact, cancer, I went home and laid down on my floor. There was shock, of course. Other thoughts bubbled up to the surface. I wanted a partner for my life, a love of my own. Maybe cancer was about to remove that possibility for me? I felt the loss acutely.

No matter how I felt about this man, cancer had made it impossible to accept a casual arrangement. I couldn’t make him love me, or want our thing to proceed.  Now that I am through treatment I haven’t forgotten how it felt to have all else but my own truth stripped away. It isn’t enough to have a worthy candidate, I need an open heart too.

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

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.

“She’s very good at politics,” says Jacob Grossman. “She’s living in DC. She has blond hair. She’s better than me at singing the presidents song. She’s very good at history. She’s deaf.” He’s talking about his sister, Talia Grossman, from whom he received a bone marrow transplant when he was three and she was five. Jacob is 18 now, a medical miracle considering that when he was born, the life expectancy of people with Fanconi Anemia (FA) was ten years.

FA is a rare genetic disease that appears mostly, but not exclusively, in Ashkenazi Jews. Jacob’s is an extremely severe case. He was born with no thumbs and one poorly-functioning kidney, among other problems. “When he was born, a doctor would come in every day and discover some new problem with him. One after another,” says his grandmother, Fran Grossman.

Jacob Grossman was born with Fanconi Anemia, a rare disease that appears mostly in Ashkenazi Jews.

He’s since had heart surgery, two hand surgeries, anoplasty surgery, ACE surgery, a g-tube installed, a colostomy surgery, and a kidney transplant when he was ten. His parents don’t know how many surgeries he’s had total—it’s literally too many to count. Just since October, he’s been under anesthesia for surgery seven times. They’re keeping him together with a bandage,says Fran. “A quiet day is a good day.”

This has been Jacob and his family’s constant reality for 18 years. And yet, Jacob is a beacon of light, his family remarkably buoyant.

“When Jacob’s in a good mood,” says his mother Rachel, “he can get the whole room engaged. He organized everyone for the prom pictures; he was talking with the dads, the moms, the kids. When he’s on, he’s really on.” He’s doing something right; he had a really cute prom date.

Rachel, a warm and calming person, is unsurprisingly a social worker–the one to whom they send the most difficult cases. Alan, Jacob’s father, is a karaoke king and something of a Facebook comedy star. Some of his recent statuses include: “I bet when Hugh Hefner dies, no one will say ‘he’s in a better place now.’” And “I’m going to be the first person to land on the sun. I know what you’re thinking and that’s why I will be going at night.”

The Grossmans.

“Once he wrote a joke about Helen Keller,” says Talia, laughing. “My mom was like ‘your daughter’s deaf, like stop.’”  How do they maintain this kind of humor and buoyancy? Jacob may be an enormous challenge, but he’s also part of what keeps them going.

“There’re 5,000 kids at his high school and every one of them knows Jacob,” Fran says, “and they don’t treat him like a little pet.” His classmates have continuously sent him presents and cards when he’s in the hospital. Fellow students have even picked him up to take him to the movies.

He has some cognitive impairment, but knows his schedule and reminds his parents about his medications. He loves studying history and playing word games. He’s got a good memory for details. As his mom talked about an outdoor adventure on a trip they took to Israel, he corrected her: “not a dune buggy, mom, it was a jeep.” In some ways he’s a typical teenager who likes to swear when he gets IVs, especially if he doesn’t like the nurses.

It’s hard to imagine that Jacob’s sweetness, health, and accomplishments can’t be somewhat attributed to the remarkable care of his family and community. Alan immerses Jacob in music. “When he’s having a hard day, we sing together in the car.” he says. Talia attends college in DC but they talk on the phone often. “He called yesterday and said he was worried about his social studies test,” she says, “he took a practice test and got an 88%, he said he couldn’t do true or false and was really upset. I said ‘It’s fine! You did your best!”

“They refuse to put him in a bubble,” Fran explains, “They travel with him! They schlepp on an airplane with 18 meds a day! He can never be left alone. He must be fed every 3-4 hours, catheterized three times a day through a tube, which he can’t do himself. You have to change his ‘ostomy bag.” Because he was born without thumbs, his hands aren’t able to do small motions. So something like a zipper requires help. “Rachel doesn’t say ‘I can’t do it. It’s too much for me.’ I don’t know how she does it 24/7.”

Jacob buoys his family’s spirits… and sometimes, they lift him too.

Rachel says her training as a social worker helps. “It works in reverse, too, since I’m more adept at handling intense situations, and knows what it’s like to be the parent receiving advice. They also get help from nurses and caretakers at home and school.

Talia explains that Jacob gets jealous of her because she can do things “typical” teenagers can do like get a license and go to college. She says he isn’t always able to express his emotions and might resort to hitting if he gets mad. But she knows “he doesn’t mean it.”

She says Jacob has made her a more accepting person, more aware of the world around her, of people’s needs in general. She says that the attention her parents had to pay to Jacob prepared her to be an independent person—a skill that she noticed not everyone had when she got to college. “It’s hard when he’s in the hospital but I know other families where the attention isn’t 50/50 anyway,” she says.

Even as his devoted caretakers, Jacob’s family is the first to point back to his own strength: “I think it developed over time because he’s had challenges since birth,” says Alan. “His stubbornness might be why he’s still with us,” says Talia.

And their strength? It’s Rachel’s job to describe coping skills, but asked about hers, she’s modest and pragmatic:

“You just do it,” she says. “You might get crabby or snippy. I knit, I read, I find comfort in food, in being with friends.” Alan, a music lover, has developed a passion for karaoke and goes to concerts almost every week.

Jacob at his Bar Mitzvah.

They also point to the enormous support of their community. When Rachel has been away with Jacob at the hospital, her friends have brought dinner to Alan and Talia, and even driven Talia to school. For Jacob’s 18th birthday, the family was set to throw 250-person fundraiser for his party, but during the planning period, Jacob (and Rachel) ended up in the hospital. Her friends stepped up and planned the party in her absence.

Still, Rachel doesn’t sugar coat it:  “You’re scared like he is, but as a parent you want to show your child that you’re their strength, so they can see it in you and know that they’ll be OK. I know that when I’m upset it impacts him, so I try very hard not to get upset. Sometimes I look back after and ask, ‘How did I get through that? How did I sleep?’”

In the beginning, she didn’t much. As Fran recounts, she went back to work three months after Jacob was born and was up all night with him, and working all day. “For me it’s not a choice,” Rachel says. “Jacob needs a mommy.”

A true Cubs fan.

But it’s clear that Rachel goes far beyond the role of mommy for Jacob. She is often his nurse, his social worker, and his full-force medical advocate. She became an expert on FA and Jacob’s conditions, and never settles for what the doctors say, always asking herself, “well what if that doesn’t work?” She researches constantly. “She walks into an emergency room and she’s an encyclopedia, with the doctors just shaking their heads,” Fran says.

Not only do the Grossmans have to make sure Jacob gets the treatment he needs, but they’ve even had to raise funds for research to figure out what those needs are. Fanconi Anemia is called an orphan disease—there so few people who have it, the government doesn’t fund research for cures and private companies aren’t incentivized either since any drug would have a small market. This has meant that the families and friends of families of people with FA have funded almost all of the research themselves through constant organized fundraising.

The good news is prenatal tests for Ashkenazi Jews have now grown to include FA on the docket, so it’s likely that far fewer kids will be born with FA in the future. Meanwhile, Jacob just danced so hard at his prom he fainted on the dance floor. “There’s ups and downs,” says Rachel, “the road ahead is going to be challenging.”

Health & Fitness

A Dance Class for Parkinson’s

By teaching people with Parkinson's Disease how to dance, David Leventhal hopes to give students a chance to shed their identities as patients and become creatives instead.

On an April afternoon in Brooklyn, dancers gather around their teacher for an Afro Caribbean dance class. Some are dressed in t-shirts and stretchy pants, some have their socks on, others go barefoot. The students are mostly over 60, but some are younger, with companions ready to join them in dance.

Soon, the drummer begins and it’s time to warm up. The dancers stay seated for this part. But before long, they’re up, migrating across the floor as they repeat a new step, their arms raised high in the air, as if they’re rejoicing in a rainstorm.

This class is much like any dance class in the world, except here, all the students have been diagnosed with Parkinson’s Disease, a progressive nervous system disorder that can cause shaking, tics, stiffness and slowed movements.

David Leventhal leads a class. Photo: Christian Tessier

David Leventhal, a co-founder and Program Director of Dance for PD, started teaching these classes 16 years ago. Leventhal, who moved to New York to become a professional dancer in 1996, was working for the Mark Morris Dance Group in the fall of 2001, when a woman named Olie Westheimer approached the company.  Westheimer was the founder and Executive Director of the Brooklyn Parkinson’s Group. She asked the dance company, which had just opened a new studio in Brooklyn, if teachers there would create a dance class for Parkinson’s patients — without treating them like patients.

At that time, researchers were already studying the ways that dance could benefit those with Parkinson’s, as well as those who’d had strokes or traumatic brain injuries. But as a classically trained professional dancer with no personal link to Parkinson’s, none of that research was on Leventhal’s radar yet.

This class is much like any dance class in the world, except here, all the students have been diagnosed with Parkinson’s Disease….

“I didn’t know anything about Parkinson’s at that time,” Leventhal said. “But Olie (Westheimer) saw that as a benefit. There was so much focus on symptom management at that time, and she didn’t want that approach.”

Leventhal wasn’t even supposed to teach the first Dance for PD class, his friend and colleague John Heginbotham was. But at the last minute, Heginbotham got called away on a family matter.

“When he came back, I said, John, that was so fun. Could we do this together?” Leventhal said.

That first class had eight participants and went well, as Leventhal learned how to simplify dance sequences to make them safe and fun, while still challenging students with an interesting mix of movements. So the Mark Morris Dance Group continued hosting the classes once a week, with Leventhal and Heginbotham teaching classes together.

Many of the symptoms of Parkinson’s disappear when dancing, Leventhal says. Photo: Rosalie O’Connor

“John and I just had a great relationship, we were able to create a great relay because John is a choreographer who does more on the improv side, where I was more about ballet technique,” Leventhal said.

They taught ballet but also modern dance, improvisation and jazz. Eventually, in 2015, the company expanded to include master classes in Irish dancing, Middle Eastern Dance, Flamenco, and others.

But the program offered more than just an intro into various kinds of movement; it gave students the chance to shed their identity as patients and become creatives, to focus on creating movement rather than “fixing” their bodies.

[Dance] gave students the chance to… focus on creating movement rather than “fixing” their bodies.

Leventhal watched as the experience improved student’s lives inside and outside the studio.

“A lot of Parkinson’s symptoms seem to be temporarily minimized during class,” he said. “I see a sense of rhythm coming into their bodies.”

And, he said, he watched the students getting bolder, less fearful.

“I saw them trying things in class that they may have not ordinarily have thought they could do. And that built their confidence to try other things in class or in another movement class, or to try totally different things, like singing.

Photo: Rosalie O’Connor

“One woman said that she was able to go to a family wedding and dance. She said it wasn’t just because she was strong enough, but because she had the confidence from dancing in class. Another student who came to class ended up studying tap dance on his own … and he would use the tap steps to help him get out of bed in the morning. He said that it was easier to use a tap dance vocabulary than it was to just think about putting his heel down on the floor in the morning.”

Even walking became easier for some dancers who had seen their walking slowed, impaired and sometimes “frozen” by the effects of the disease.

“Outside of the classroom, there’s an unpredictability in their movements, but not so in class,” Leventhal said. Something about dancing allows people to experience a sense of flow that they don’t have in everyday life.”

“A lot of Parkinson’s symptoms seem to be temporarily minimized during class…”

Right now, Leventhal is working with researchers from Columbia University and the University of Washington in St. Louis, to study whether dance can help people with Parkinson’s walk at a faster pace, the way they did before the disease began to progress.

Remarkably, Leventhal said, dancers don’t even have to be physically doing the dance to reap the benefits of Dance for PD.

“We give permission for people to sit and look, too … because watching dance is almost as beneficial as dancing. Your brain is going through the same action and firing in the same way that it is when you’re doing it,” he said.

For many students, Leventhal said, Dance for PD has given back a sense of mastery over the body and movement that Parkinson’s threatened to take away.

“It’s satisfying for them (to dance) … Because the rest of their movement lives are frustrating. They don’t feel mastery of things like walking or turning around,” he said.

Photo: Amber Star Merkens

Leventhal’s observations are backed by numerous studies that have now been done on the benefits of dance for people with Parkinson’s.

In studies that compared the effects of walking versus Tango classes on elderly, frail participants, for instance, both kinds of exercise made people stronger. But people who danced saw their balance and walking speed improve more. And after the trial ended, more than half the people in the Tango group kept going to class, while none of those in the walking test group continued to walk for exercise.

It’s the joy of movement and the sense of community that may set dance apart from other kinds of beneficial exercise, which explains why Dance for PD is now taught around the world, with approximately 6,000 participants taking Dance for PD or Dance for PD-inspired classes.

Photo: Rosalie O’Connor

New York has eight different Dance for PD classes, including the one in Brooklyn. And trainings for new teachers happen every year around the world in cities like Shanghai and Madrid.

For this who can’t make it to class in-person, or want to dance more than once a week, Dance for PD puts out DVDs and a monthly livestream class. It’s also developing an experimental app with Google Glasses to help people with Parkinson’s walk more easily.

Leventhal said that teaching the classes has made him a better teacher overall.

“Over the years of teaching this class, I’ve learned how to simplify, to find the essence of what we’re doing,” he said. “Now that we know a lot about Parkinson’s, we have to try even harder to keep the class an oasis, so that it’s a place that’s not driven by the symptoms of the disease, but by the development of craft and artistic exploration.”

Splash photo by Eddie Marritz.

 

Profiles

Pic Picot, New Zealand’s Blind Peanut Butter Poet

With the help of quality ingredients and his service dog Fido, the founder of Pic's Really Good Peanut Butter hasn't let macular degeneration get in the way of establishing a food empire.

When Bruce “Pic” Picot started making peanut butter, he was enrolled in a creative writing course and spending most of his time making poetry.

Eventually, the two would combine in a fifteen million dollar success story he never expected to happen.

“I just wanted an excuse to have a stall at the Friday farmer’s market, and to maybe make a bit of pocket money,” he says.

That pocket money went further than he ever imagined.

In the beginning, he did the peanut crunching himself. Now, he’s got a whole team who do the daily grind, which is useful, because Pic has macular degeneration. He’s going blind.

“Both my parents are blind; it runs in the family. I knew this was going to happen, though I’ve been assured I’ll never lose my vision completely.”

Both my parents are blind; it runs in the family. I knew this was going to happen…

Pic developed the condition younger than most, in his mid twenties. Now in his sixties, he can’t see much in the middle, but still has “pretty good” peripheral vision. He has a service dog, Fido, who helps him get around.

Fido, a black Labrador, is provided through the New Zealand Blind Foundation. He’s travelled with Pic across the country, and on a trans-Tasman flight to Australia. Unfortunately, he is restricted from going much further because of international quarantine and customs laws.

Fido, Pic Picot’s loyal service dog.. Photo: Daniel Allen

But for the most part, the two are inseparable. Pic appreciates Fido’s assistance and friendship so much, he is sponsoring the training of a service dog for someone else in need. The puppy is to be called Peanut.

“I’m really lucky to have him, and I want that for others,” says Pic. “He’s such a good dog, he’s so trustworthy. He’s a lovely companion to have, and he’s a great excuse to talk to people.”

Pic is a people person through and through. He says the only problem with travelling with Fido is that he gets an empty seat next to him– meaning he misses out on meeting a fellow passenger

“Usually I’d have someone to chat to, which I love, that’s the reason I’m traveling most of the time. Finding people to chat to.”

He does more than that. With the team taking care of the business back home, Pic is free to hop about the world, selling his peanut butter to anyone who’ll listen to his story and have a taste. And plenty have.

“Everybody eats, so being a food maker gives me an excuse to talk to anybody. They eat the peanut butter and I make it, so I’m a part of people’s lives.”

Everybody eats, so being a food maker gives me an excuse to talk to anybody.

Pic, who has never worked for anyone else and spent his life starting and running businesses, got the idea for the product when he discovered that most manufacturers were filling their spread with sugar. He hated both the practice and the taste, so he bought a second-hand nut grinder for two hundred dollars, and started making his own butter in his garage.

“Both my parents are blind… I knew it was going to happen.” Photo: Daniel Allen

That was in 2007. Now, the factory in Nelson, New Zealand produces fifteen million dollars’ worth of products a year, including peanut, almond, and cashew butters. They all contain the same unique selling point – no added sugar. The factory itself is pretty special – it has a large mural of Fido on one wall.

Pic’s had a hard time handing over the reins. He loves the machinery and software, but it’s not practical for him to be on the factory floor all the time. So he spends his days spreading the word, and it’s working. The spread is now sold in twelve countries, including New Zealand, Australia, Southeast Asia, Japan, China, the UK, and in 200 outlets in California.

And he still gets to make the most of new technology.

“It’s a hell of a good time to be blind!” he says. “I went to Israel and I got a camera that fits on your glasses. It recognises faces and converts text to speech. Amazing. And we’re only going to get more and more of that sort of thing.”

That can be helpful, because sometimes other people are not.

It’s a hell of a good time to be blind!

“I do get people getting cross with me, when they don’t realize I’m not sighted. I might accidentally skip a queue or something, and people will say things. Then I say ‘Sorry, I’m a bit blind,’ and they might go ‘Yeah, me too,’ not realizing what I actually mean!”

Meanwhile, he’s never quite given up that love of writing, and each jar of Pic’s contains a little surprise: a poem on the inside of the label.

Pic and Fido. Photo: Daniel Allen

“They’re printed under the name Bill Smith,” he says. “Bill’s a real person – he’s 103 now. But actually the poems are by me, Cliff Fell, who was my tutor when I studied creative writing, and a woman named Anne French.”

Pic wants to get started on an autobiography next. With his reduced sight, writing is one of the things he finds challenging. “I go to copy paste something and I can’t see if I’ve done the right bit, I move things around and then I’m not sure what’s left. It can take a whole day to write half a page.”

But the frustration doesn’t get him down for long.

I like who I am… and this–the blindness–is part of me.

“I like who I am,” he says. “And this – the blindness – is part of me.”

As for the peanut butter business, it continues to grow in leaps and bounds. It looks a little bit like he’s plotting world domination.

“Maybe,” he laughs. “Yes. I want Pic’s to be the best loved peanut butter in the world.”

Essays

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.

I never liked having my picture taken.

As a kid I smiled for the camera, but as I hit my teens I secretly hoped that when the photos got back from the film lab they would show a different me, one with wider lips and a smaller nose. I never felt photogenic, unlike my older sister whose face seemed to light up the camera. I studied image after image: the length of my chin, the length of my brows, the color of my hair (an unacceptable mousey brown, I thought).

This continued through college (bad hair), my twenties (adult acne), and even to my wedding day. What I thought I looked like when I glanced in the mirror never reconciled with the image in the photo. (This was well before digital photography was the norm; there were plenty of photos to look through, with free double-prints—and no delete button.)

Laura Holmes Haddad and her son Roman, the day before her diagnosis.

When I got pregnant I got more comfortable behind the camera, figuring I would want memories of my expanding belly, my firstborn. Capturing a baby belly seemed worth it. And then I set out photographing my daughter, Penelope; with a new iPhone and a smiling baby girl there was nothing stopping me. I had hundreds of images. Children literally change overnight, and the impulse to record the moment is automatic. And then I got pregnant again, and when our son Roman was born there were endless moments to capture: smiles, tears, laughter.But while I wanted photos of the kids, I didn’t particularly want to be in them. I remember so clearly when I hired a photographer to take a few photos of me and the kids when Roman was 9 months old. In most of them, I’m turning my head, or nuzzling Roman’s head, or hiding behind my two children.

But two months after those photos were taken I was diagnosed with Stage IV inflammatory breast cancer. Penelope was 4½ years old, Roman was 14 months, and I had an 11-centimeter growth in my left breast and was given about 2 years to live if the treatment didn’t work.

Laura plays with her two children in the snow, after chemo.

Something switched inside me. Perhaps it was the giant clock I felt ticking above my head, perhaps it was a maternal instinct that kicked into high gear the moment I got the news. All I know is that I suddenly wanted photos. Lots and lots of photos. Every day, at least twice a day, and sometimes more. Photos of me, the kids, our family, our outings. I wanted photos of my cancer “journey” and I wanted them now.

Something switched inside me. Perhaps it was the giant clock I felt ticking above my head…All I know is that I suddenly wanted photos.

I have a photo of me and the family picking out a Christmas tree the day before I started chemo; a photo of me hamming it up in a horse saddle at a restaurant in Houston, on a break from a doctor’s visit at MD Anderson. I have a photo of my head shaving, stunned and sad; I have a photo of me singing karaoke on Christmas Eve, in a red dress and a headscarf, just off my first round of chemo. I have photos of my daughter’s 5th birthday party, which I practically crawled to; I was determined to make it happen, cancer or not. I wince when I see those images, see the suffering in my eyes. And I cry when I see the joy on Penelope’s face as she is blowing out the candles on her cake. It was worth every excruciating moment.

Laura at her son Roman’s second birthday party, taken during treatment.

Taking photos felt—and still feels–like a way to stop time. I needed proof I’m still here. I’m on this Earth, still. Seeing the images, holding a print in my hands, feels like the most physical way to say I am living this life.

Laura and her kids, May 2013.

When I got derailed in my treatment—the chemo wasn’t working, I was waiting to get into a clinical drug trial–my sister’s friend, a photographer, offered to photograph me, my sister, and the kids. We met in a local park on a cold morning in February, the kids in sweaters and me in my favorite blue headscarf. My daughter and I are wearing pink cowboy boots. The photographer took photo after photo of me and the kids and me and my sister. They were and are spectacular. As I write this I can hardly stop crying, thinking of that day. Those photos froze my kids in a moment I barely remember. I was often in bed, or traveling by plane for treatment, hardly ever with them and struggling through overwhelming pain. My daughter looks blissful, and then serious, and then wistful. My son sits with my sister, who essentially helped raise him for almost two years while I had treatment. My husband had to go to work every day to keep the health insurance and the paycheck coming, so my sister folded my kids in with her three daughters.

And then there is the photo of me and my sister, laughing—laughing despite the darkness. We were laughing, even though we had no idea what that month would bring, no idea whether I would gain access to the clinical trial. We didn’t know that a week later I would start traveling from San Francisco to Los Angeles every week for six months to receive chemo. That surgery and 40 days of radiation would eventually follow, with years of chemo still to come. That the heavy praying would start then.

Taking photos felt—and still feels–like a way to stop time.

I’ve been off chemo for two years and I appear in almost every photo. There are no bad hair days anymore, really no bad days at all. Some photos are great, some terrible, some show the bags under my eyes, my “bad side.” I want to capture life. Some photos have an arm through my face, the result of my son’s temper tantrum at that moment; some have my daughter’s scowl if I’ve forced her to stand still; others show my husband’s exasperated “another photo?” look. But they are moments that happened, and that is good enough for me. And the photos show me, and everyone I love, that I am living life the best that I can; that I’m not squandering this gift I have been given.

Proof of life.

And although I am NED (no evidence of disease) and remain optimistic about a healthy future, there is always a tiny cancer voice in the back of my head that keeps me vigilant. The voice that says, “just in case something bad happens, leave a memory. Leave something memorable.” My daughter now has her own camera and I love flipping through the images, seeing the world from her eyes. My son takes photos with the iPad, and even the feet and half a tree images make me laugh.

I create photo books for the kids almost every month. It’s this insatiable urge to leave them with memories, to leave them with photographs that tell them, “I loved every minute as much as I could. I loved you every second. We did this. I was here with you.”