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Essays

No Silver Lining

My husband's slow descent into delirium had no upside, but it failed to diminish my love for him, or the effect he'd had on my life.

It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.


I’ve never believed that every cloud has a silver lining or as the German philosopher Nietzsche said, “That which does not kill us, makes us stronger.”

My husband’s debilitating dementia had no silver lining, and it made neither of us stronger. John’s decline was marked by suicide threats, crying jags, and psychotic episodes that landed him in the geriatric-psych unit for weeks. Once he even managed to hurl himself out of a reclining wheelchair.  He knew he was losing his mind, and he objected.

By the time we first started dating thirty-six years before, I’d had my share of relationship failures, including the breakup of my first marriage, which I felt so guilty about that I split myself into two people: the one who wanted to stay, and the one who wanted to leave. The two argued incessantly, and I was always trying to make a quick getaway in the hope that I could escape one of them and find some peace of mind. The one who wanted to leave turned out to be my better half, and ultimately we both left my husband.

John and Pamela, shortly after they met.

In contrast, John, an NYU professor seventeen years my senior, evoked the image of a steady ship in calm waters with his tall person, confident stride, and ever-present briefcase.

After we’d been dating for a few months, John left for a fly-fishing trip out west. I missed him terribly.  Then late one night, the telephone rang in my apartment. It was John, calling from Last Chance, Idaho.

“I’ve been thinking about you,” he said. “I’d like to spend more time with you.  In fact”—there was a pause on the other end of the line—“I’d like to spend the rest of my life with you.”

I was speechless, terrified that this was too good to be true.  I panicked that I would ruin our relationship by panicking, and he would get sick of my panic and leave me.  This created more panic.

All the same, that August we got married and moved into a 5th floor Chelsea walk-up.  The panic moved in with me.

One day, shortly after we got married, John found me sitting on the apartment stairs crying. He was stumped. What the heck was I doing sitting there crying about nothing?

Eventually it occurred to me that John wasn’t going to get scared off by my panic attacks.  He loved me whether I panicked or not.

“You’re playing to an empty house,” I told myself. “Why don’t you just relax and enjoy the relationship?”

“Why don’t you just relax and enjoy the relationship?” That was some of the best advice I ever got.

That was some of the best advice I ever got.

From the beginning, John expressed unshakable confidence in my dream of becoming a writer.  Not only did he think I would be a writer, he believed I already was one, even before I demonstrated the talent or tenacity.  That someone believed I could actually accomplish anything was a novelty for a girl who had grown up with a conspicuous lack of abilities or even intelligence, at least that anyone took note of.

I spent most of my time as a child obsessing about the unsettling fact that I had been born, which meant that one day I would die.  When my parents took me to see a movie about the Titanic, I became alarmed by how swiftly and haphazardly death could come.  One minute you’re singing and dancing, and the next you’re drowning in the North Atlantic.

Kindergarten came as a rude interruption to my existential preoccupations, and I almost flunked out.  My mom said I was dumb, like her which was sad because she was more confused than dumb.  My teachers said I needed to adjust, which never happened, and my first husband, whom I married at nineteen, said I was an idiot to think I could ever be a writer.

A picture of John and Pamela, after John won the NYU Distinguished Teacher’s Award.

With all my worries about getting shipwrecked in the icy Atlantic, bad grades, and a husband who assaulted my intellect on a daily basis, life was a challenge.

Until John.  John not only believed in my dream of becoming a writer, he believed in me as a person, in my innate goodness.  If faith is the evidence of things not seen, then he had more than confidence in me – he had faith. And because of his faith, I became the person he believed me to be (almost) and the writer he believed I would become.

Then John had a stroke. Now, I had something concrete to panic about.

My efforts to keep John alive and safe felt like trying to outrun a truck that was careening downhill. The stroke was followed by multiple falls, fractures, seizures, and surgeries. Eventually he could no longer walk.  The cost of hiring round-the-clock nurses ($18,000 a month) was out of reach, so I placed John in a memory care facility close by, and visited him every day.  I brushed his teeth, played Bach and Jessye Norman, exercised his legs, and reminisced about the past.  When our daughter, Annelise, talked to him about college, his face lit up, if only fleetingly.  But our separation made me feel like I was leaving this man who had always stood by me, or that we were leaving – or losing ­–each other.

“I couldn’t find you,” he’d cry, when I visited him. “I didn’t know where you were.  I didn’t know who I was.”

Now he was the one panicking.

For John, I existed in a dream: an apparition of memory, love, and self, miraculously appearing out of nowhere, then vanishing just as mysteriously.

Sometimes I’d hold his hand. “You’re magnificent,” I’d say.  And then he’d have more than himself for just that moment; he’d have us.

As time passed, I witnessed fragments of his mind fall and shatter, like pieces of an antique lamp. He was a brilliant man, and some of the pieces glittered.

As time passed, I witnessed fragments of his mind fall and shatter, like pieces of an antique lamp.

Late one night the telephone startled me awake.  It was a nurse on John’s floor.

“John’s screaming and we can’t calm him down,” she said.  “Will you try talking to him?”

A few minutes later the nurse handed John the phone.

“I’m not even French and they’re trying to kill me!” he yelled.

Oh my God, I thought, he’s in the French Revolution, which wasn’t surprising since he taught 18th Century literature and history.

I did not succeed in calming him down that night, or bringing him into any other era, including the present.

Ultimately, everything faded from his mind: his passion for teaching, his joy in his students’ success, people and places from the past.  But when all that had vanished, he still knew me and our daughter.  The details of our lives – where we lived and what filled our days – eluded him, but he knew who we were and what we were to him.

Still I was not prepared to call that a silver lining. A titanium lining, at best. Titanium, I knew, blended strength and practicality with a high melting point: just like me, since I’ve been known to blow a fuse now and then.

“Are we married?” I asked him one day, after yet another stint in a geriatric-psych hospital.  It had been two years since he’d moved to the memory facility, and he was fading fast.

John gazed at me fiercely, in spite of the haze of dementia and truckloads of tranquilizers and anti-psychotics he was on.

“Absolutely,” he said.

Three days later, he was dead.

His death brought new questions and dilemmas.  How could such a tremendous (though diminished) personality simply vanish?  Could he still see me somehow? Would we meet again, on a trout stream one summer evening: he casting a fly, me reading on a grassy bank nearby?

Our daughter Annelise rests her head on John’s lap, shortly before he died.

A friend told me her late husband returned as a thrush one spring morning, and trilled a song to her from the treetops.  Was the bird singing outside my window, John?
At John’s burial, our friend Gary, who knew John years before I had, said a few words.

“When I met John he was a kind and serious man, but emotionally heavy,” he began.

Old friends who had gathered around the gravesite nodded knowingly.

“In the periodic table there are transitional metals like silver, gold, ribidium–heavy metals,” Gary went on.  “When John met Pammy, his soul lightened.  Nitrogen, hydrogen, helium – these are the elements he inherited when he fell in love.”

The word “helium” brought laughter and recognition. But no Nietzschean strength. I wondered when I would recover.

Yet, with time, John’s confidence in me, his very essence, has became a part of me, of who I am and how I make my way through the world.  Gradually I have grown more serious, more solid.

I still panic about nothing, but every once in a while I catch a glint of those transitional metals Gary spoke of at the gravesite that day: gold, rubidium, and, yes, silver.

Essays

What Depression Means When You’re An Immigrant’s Kid

If you're a first-generation American, how do you tell your family about your depression when they believe that the answer to everything is to lift yourself up by your bootstraps?

In my sophomore year of high school, I started having bouts of suicidal ideation. I would think about how best to kill myself, painlessly, without putting any of my loved ones through a gruesome scene. By then, though, I had learned that these were not issues I could discuss with my family.

Mental health was not discussed in our home.  The reasons were cultural. As a family of first-generation Latino immigrants, my parents believed that even the strong only had a slight chance of making it. As for the weak? They didn’t survive.

My parents came to this country not just in search of a better life, but to escape dangerous situations back home. Their lives were full of anecdotes of surviving situations that we, their children growing up in the United States, could only imagine. For my parents, depression and anxiety were luxuries only the wealthy could afford. We didn’t avoid talking about mental health, so much as we lacked the very language necessary to discuss it.

For my parents, depression and anxiety were luxuries only the wealthy could afford.

Immigrants learn to live with sadness. The background noise of their lives is the impossible to fulfill yearning for family, friends, sights, and smells of a home left forever behind. Emotional pain is the price that immigrants pay in the hopes of a better future.

We, their children, benefit from this sacrifice. Our lives are filled with tremendous privilege. But for our parents… well, when you’re busy working several jobs to make ends meet, there is little time to stop and reflect if you’re happy.

My father grew up in rural Mexico. As the oldest of seven, he was forced to leave school after 6th grade to work in the fields so that he could help support his family.  At 17, he emigrated to the United States and worked two jobs to send money back home. A dutiful son, he never stopped providing support, even after I was born.

When I started imagining killing myself, my parents were divorcing, but in truth, they’d always led different lives. The majority of my life, they’d barely been in a room together, working opposite shifts so I could always have a parent at home with me. When they split, it was hard for me to shake the feeling that the divorce wasn’t, in part, my fault.

So I kept my suicidal thoughts to myself. I felt that whatever suffering I was going through simply couldn’t compare to the hardship they endured in their lives. After all, when your parents came to America escaping poverty and–in my mother’s case–a civil war, it’s hard to make a case that anything in your cushy American life is hard.

When your parents came to America escaping poverty and a civil war, it’s hard to make a case that anything in your cushy American life is hard.

Until my first year of college.

One day, I was in the middle of a lecture when my foot started shaking, and my heart felt fit to burst. I left class and attempted to drive home but was forced to pull over. I felt as if all the oxygen had suddenly been sucked from the car; an intense fear washed over my body.

Over the next few days, the symptoms worsened. I called my primary care doctor. Nothing was physically wrong with me, but she was Latina, and she suggested that maybe my heart palpitations and tremors were due to panic attacks.

When I told my mother that my doctor thought I might have an anxiety disorder, she reminded me why I hadn’t brought up my suicidal ideation years before. She said: “If you cannot handle life at 19, what will you do when you have real problems?”  It was insensitive, but she meant no harm. She was trying to protect me.

My whole life, my mother told me that I needed to be strong, because life was tough for people like us. When she was in high school back in Guatemala, her grandfather and other relatives had been slaughtered by guerillas. She and her six brothers and sisters were sent away into hiding; they were never able to return. It had an indelible effect on her world view: in her mind, loss and tragedy were always just around the corner. She wanted me to be prepared.

The fear that your accomplishments will never make up for the sacrifices your parents made for you is a pressure that many children of immigrants born in the United States have. For some of us, it drives us to succeed, surmounting cultural barriers to be the first in our families to, say, attend college, or become a doctor.

There is a burden to the “pull yourself up by the bootstrap” mentality that can further isolate children of immigrants

But that pressure can also take its toll on our psyches. There is a burden to the “pull yourself up by the bootstrap” mentality that can further isolate children of immigrants, even within their own families. It makes us feel like we shouldn’t ask questions, that we should have everything all figured out. We are outsiders at school, where we lack the social capital and financial resources of our peers; at home, we’re outsiders from families who view us as pampered and “too American.”

So between our feelings of inadequacy and the lack of awareness of mental health, no wonder Latinx-es like me can succumb to depression. In fact, a study published in 2014 found: “First-and second-generation Hispanics/Latinos were significantly more likely to have symptoms of depression than those born outside the U.S. mainland.” The Center for Disease Control also reported that Latinx students actually had a higher rate of suicide attempts than white and African-American kids.

Luckily for me, once I was diagnosed, I was fortunate enough to have both health insurance and a doctor who understood the stigma of mental health issues in my community. She urged me to seek counseling, and told me that if I found my home life stressful, I should consider living alone. She reassured me that the transition to college was difficult for everyone and that my feelings were absolutely normal.

To many, those small words of comfort and understanding might seem trite. But for me, they were life changing. For the first time, I knew I wasn’t alone. I also understood that it was acceptable to set boundaries with my family. That prioritizing myself was an act of survival that was just as important as the ones my mother had tried to teach me. In a culture that so often values community above the self, and that sanctifies women for dedicating themselves to the service of their families it can be difficult to say, I choose to take care of myself.

It would be a few more years before I actually sought counseling. Simply put, I had to overcome the ingrained stigma towards being labeled “crazy.” What finally pushed me into it was a Latina boss who shared she, too, had sought therapy in her life. Treatment helped me gain a better understanding of the issues that led me to be depressed and anxious in the first place. I realized self-care wasn’t a luxury, like my parents had taught me, but an act of survival.

I realized self-care wasn’t a luxury, like my parents had taught me, but an act of survival.

In my late 20s, I suffered a debilitating depressive episode. This time I used a combination of treatments to power through it, including medication, therapy, yoga, and life coaching. If I stepped outside myself it still felt indulgent to dedicate so much money and effort to my “frail” psyche, but I had started to see my mental health as a chronic condition that needed to be managed. And I didn’t feel guilty about it: I knew that I had privileges, information and resources my parents never had access to.

Today, I’m quite open about my mental health. I talk to my family about my depression and anxiety, and the more I am comfortable talking about it, the more others open up to me about their own struggles. I am frank and open with my parents about my troubles: for example, when I was on antidepressants, I made sure both of them knew I was having a hard time.

In turn, I think this openness has helped them live more emotionally healthy lives. A few years ago, my father had a mental health evaluation. During that session he was told that he too suffers from depression, and afterwards, we had a good conversation about how he thought this related to his difficult childhood, and addictive behaviors. As for my mother, while she is not yet open to seeing a therapist herself, her awareness of mental health issues has increased.

What goes around comes around. It turns out, my parents were on the right track: you need to give your children the tools to handle the ups and downs of life. But sometimes, children can give their parents those tools too.

Essays

Out of Body

Getting breast cancer felt like being cheated on: even after it was over, as with many infidelities, it took me a while to learn to love my body again.

Until I was diagnosed with Stage IV inflammatory breast cancer, I didn’t think much about my body. I relied on it, of course, and I took care of it (exercise, green leafy vegetables, triple chocolate brownies). And it took care of me, until it didn’t. Most of us operate that way, I think. It’s almost an automatic response. Wake up, brush teeth, put one foot in front of the other, make breakfast. Until you can’t. Until one day your eyes open and your body doesn’t cooperate. Until you can barely sit up in bed, much less get to the toothbrush or the kitchen.

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

And that was the biggest shock of all. When I heard the word cancer, I thought of chemo, bald heads, vomit, and exhaustion. I didn’t think I would lose my physical being—the part of me that loved to dance, play tennis, jump into a swimming pool, hold hands. I hugged with abandoned.

But as I started treatment, I retreated. It started with the PICC line, making sure no one got near my right arm. And when I got a chest port put in, any form of hug became incomprehensible. I didn’t want anyone to touch me. Everything hurt. A nod, a hand squeeze, a wink became my preferred way of communication. As the chemo drugs did their thing, my mouth and my eyes and even my balance were foreign to me. Sometimes even talking was just too exhausting. I became fearful of my body, of what it was doing to me and what people were doing to it.

It’s not just the treatment itself that seizes your physical body; it is the lack of movement from being in treatment. I woke up every day feeling like a stranger. Where was the strong body that had carried two babies and delivered them without a hitch? Where was the body that had run through the hills, walked thousands of miles in cities around the world, and that had breathed in and out without me even thinking about it?

I would sit on a park bench and just watch people move: walk a dog, throw a Frisbee, catch a ball. I ached for my old body.

Suddenly I could barely walk. The trek through the hospital halls to the parking lot felt like a marathon. Traveling for treatment I relied on wheelchairs in the airport to get me to the boarding gate. My soul resisted these changes. I yearned for the ability to move my body in ways that were joyous and positive. I would sit on a park bench and just watch people move: walk a dog, throw a Frisbee, catch a ball. I ached for my old body. I wanted to sink in a pool of water and float for hours. I wanted to sit in a swing with the kids and spin until we were dizzy. But instead I sat in my bed, stuck in a cycle of vertigo and nausea; I swam in visions of darkness and death. I watched the rain drip from the leaves outside, or the sun create shadows on the house next door, listened to a dog bark down the street. I was motionless. My physical being was gone, lost in a swirl of IV lines, medication bottles, needles.

So while I was trapped in stillness, I decided to watch the physicality of others. My mom bought two tickets to a Cirque du Soleil performance. I hobbled into the theater, my mom holding my arm, and we settled into our seats. The performance began and I sat still, staring at the performers. Their ease in movement, in flight, in motion, and bodies that did what they told them to do—it left me breathless. What must it feel like to wake up in a body that moves so easily. I wanted to touch the acrobats, to feel their muscles, to feel the blood running through their veins, to feel and absorb the life I saw in them. I wanted a body that reacted to touch, that craved sensation. My body had become a pincushion, a way in for medication, a thing to be healed. A body that other people talked about in front of as if I weren’t even there.

I cherish my body, this body that put up the best fight against cancer.

But seeing that performance sparked something in me. Something that made me move a little more, made me forgive my body a bit, too. I walked a little more each day, to the mailbox and beyond it. After the first surgery I made it up and down the wide hospital hallway on the second day, clutching my IV pole. Then more walks: past the marsh with my sister; down a city street with the kids to get ice cream; with my friends to see the ocean. Slowly, slowly, the energy returned. My being returned: I remember the first time I danced (a tango class with my husband for Valentine’s Day), and my first hike up a hill.

The contrast of the before and after is profound. I cherish my body, this body that put up the best fight against cancer. This body that came back to me, a little worse for wear but still here.  I move it every day in countless ways, and even dance in my sleep, sometimes. Finally, the physical me matches the mental me. I am whole again.

Creative Commons photo by Louish Pixel.

Essays

The Silent Vampire Goes Trick Or Treating

Be kind to the quiet kids on Halloween. My son might not say thank you when you give him candy, but his silence isn't rudeness.

As my little six-year-old vampire approaches a stranger’s door, my heart shrinks with worry. How will it go?  I know he can’t yell “trick-or-treat” like he’s expected to, or even whisper it. Will people give candies to a silent little monster with an orange bucket?

The British old lady who opens the door exclaims “Ooh! Another one! You’re SO scary!” and spends some time trying to elicit the traditional “trick-or-treat” from him. She’s unsuccessful: he stands there silently, his arms stubbornly outstretched. She drops some candy into his bucket, but mistakes his silence for sullen entitlement, so she tried to educate him about manners. “What do you say?” she asks.

Again, no response. This time, I slowly count till five in my head. As my child turns away from the door, I cheerfully exclaim: “Thank you!”

Despite the perceived rudeness, I consider this encounter a success. I’m proud of my little vampire’s silent persistence. The truth is, it’s a huge achievement to just get him to this door. For several years my son has suffered from Selective Mutism (SM), a childhood anxiety disorder that makes children who are perfectly capable of speaking mute in certain situations. And the situations where kids are specifically expected to speak–such as trick-or-treating–can be the most anxiety-provoking for such kids, often causing meltdowns.

At his worst, when he was around four, my son wasn’t speaking to anyone but his dad and me. This year, though, things have improved. At a new school, he has made friends, and is generally treated like an average kid. But even so, whether he’s laughing with his school chums or crying over a skinned knee in the playground, my son never emits a single sound.

Selective mutism looks a lot and is often confused with simple shyness, but it’s anything but.

Selective mutism looks a lot and is often confused with simple shyness, but it’s anything but. Eventually, a shy kid either crawls out of his shell, or comes to peace with staying within it. A selectively mute kid, on the other hand, is desperate to crawl out and participate but is unable to do so due to extreme anxiety that makes them freeze like a deer in the headlights.

These kids are often mistakenly labeled as stubborn or defiant or rude, especially if their body language is not that of a shy person, but these labels couldn’t be further from the truth. Unlike simple shyness, SM doesn’t go away on its own. Left untreated with speech and cognitive behavioral therapy, it can carry on into adulthood and severely impact the person’s quality of life.

For a selectively mute child, social situations tend to be fraught with anxiety… and unfortunately, that’s true for us parents, too. For his dad and me, the special challenge is that my son, despite his SM, happens to be a social time. He’s not content to stay on the sidelines of a major kid’s day like Halloween. He wants to participate, but when he does, his social encounters often frustrate him, and these misunderstandings can lead from anything to hurt feelings when people misunderstand him, to, at worst, total meltdowns.

So how have we coped with Halloween, the most social of holidays? At first we avoided it. Both me and my husbands are introverts, and being immigrants, it’s not a tradition we grew up with. But when he was four or five, all the excitement surrounding the holiday–the candy, the costumes, the clouds of spooky kids floating down the neighborhood street, laughing–made it impossible for us to avoid Halloween any longer.

Since then, we have navigated All Hallow’s Eve with varying degrees of success.

One year we made sure to go with a crowd of kids so that his silence would be less noticeable. But it was not always possible, and sometimes he was caught alone in front of a stranger’s door. In some cases, people requested he speak, cueing him to say things like “Trick of treat!” They meant well, but even in a joking way, this sort of call out can be very anxiety-inducing for a kid with SM, and sometimes lead to meltdowns that require an early end to the night… which, of course, just makes him feel worse.

Our best Halloween year, we lived in Toronto, and my son dressed up as a Toronto city bus. Instead of knocking on people’s doors, we went on a ride on the TTC, Toronto’s public transit network .People admired how much he looked like a real bus, and gave him candy unsolicited. Liberated from the door-to-door expectations of trick-or-treating, my son had a blast. Unlike approaching a stranger’s door and begging for candy, silence is somehow more acceptable when a stranger comes up to you. After all, they were the ones who initiated the interaction.

Unlike approaching a stranger’s door and begging for candy, silence is somehow more acceptable when a stranger comes up to you.

This year, my son is eight. Thanks to a lot of support from his school and his speech therapists, who worked hard to desensitize him to the sound of his voice and come up with alternative ways of communicating his needs when speech fails him, his SM is largely behind him. This year is the first year our Halloween will go smoothly: I’m less worried about him freezing up when a stranger opens their door than with my son boring them with Minecraft strategies.

But even though these challenges are now behind us, I’m not really done thinking about all this. I still remember the stress you go through because your kid wants to speak but is unable to. I’m thinking of the thousands of other selectively mute kids who are still struggling to find their voice.

Recently I decided to turn to other parents in an SM support group on Facebook, to ask how other parents have helped their kid on Halloween. I was wondering what we could have done differently all these past years. I was relieved to find out that we were not alone in having imperfect Halloweens and was amazed at some parents’ strategies to make this day easier.

One parent actually had her daughter hand out candy at the door in costume, where there was no verbal expectation of “Trick of treat!”, unlike going door-to-door to beg for candy. Another parent recorded their son saying “Trick or treat!” on a tape recorder ahead of time, and just played it at each house.Many parents advice to go with a big crowd of loud non-SM kids (which is what we did some years). And other parents just spent a lot of time, practicing how to say “Trick or treat!” with their SM kids in advance. My favorite piece of advice: Get a funny costume, or even better a costume without a mouth so you’re expected not to speak.  And another great one: Make a big card with Trick-or-Treat or Thank You written on it in big scary letters.

So be generous to the little ghosts and witches and werewolves who come to your door.

Most importantly, everybody concurs, tailor the situation to your individual child and where they are with their SM. Don’t force or coerce them to do things they are not ready to do.

That’s a lesson I think everyone could keep in mind this Halloween, as trick-or-treaters come up to their doorstep. A silent child, jack ‘o’ lantern outstretched, might seem odd, ungrateful, or even rude. But you don’t know what’s going on under their costume. Maybe they are like my son, and underneath all of their anxiety, they most desperately want to thank you, but can’t. Maybe just coming up and ringing your doorbell took more bravery than most kids will ever show.

Or maybe not. But Halloween isn’t really about ghouls and goblins. It’s about community and generosity. So be generous to the little ghosts and witches and werewolves who come to your door. They may not thank you with their lips, but if you let them take part in Halloween without making a scenes, chances are they’ll be thanking you with their hearts.

Essays

Beautiful Girl On A Distant Planet

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

In her cosmology, Bozling was an alien who lived on another planet.

Kathy was my best friend. Bozling, she said, communicated with her telepathically. One fall night, the leaves still magenta under the stars, she said, crying: “Here’s a tear because Bozling’s not here.” Bozling said, through Kathy, that he had the ability to see our past lives, or akashic records, which are a compendium of everything that has ever happened or will happen on earth. Apparently, in past lives, I’d been a gypsy, a water carrier, and a poet.

It was the late 1970s, the days of Ziggy Stardust and The Spiders From Mars. Bowie was more than just a rock musician: he was our high priest, and we dressed accordingly. I had a platinum buzz cut and wore silver platform shoes along with men’s neckties and suits. Kathy draped herself in long silk scarves, and painted the moon and the stars in acrylics and glitter on her jeans. We were 16, and perfectly matched.

Kathy didn’t seem sick then. I thought she was plugged in to a higher realm.

I liked the idea, metaphorically, of an interplanetary being. The whole star man ethos was definitely in the air for us. I was reading Edgar Cayce, the American mystic, at the time, and my boyfriend was practicing to see if he could astral project in his sleep at night. I wrote poetry about Bozling, and Kathy sketched pictures of him; a spaceman with antenna, alone, on a cold planet, not unlike the hero in Antoine de Saint-Exupéry’s The Little Prince.

The whole star man ethos was definitely in the air for us.

Bozling said many of the same things as Cayce: that we have many lives and many masters, that some of us were reincarnated from the lost city of Atlantis. It was around this time that her appearance started to change. She lost weight. Her olive skin grew pale. Her eyes seemed to get bigger. Her make-up, once meticulous, became more outlandish; yellow and pink eye shadow, smudged dark lips. Before she reminded me of an Egyptian princess, now she started to look like a ghost.

Initially, I didn’t pathologize any of Kathy’s new behaviors: not the change in her appearance, her new found psychic ability, or even her interplanetary friend. It never occurred to me that she was sick, that these were classic symptoms of schizophrenia. We’d certainly been chasing transcendence in many other forms including LSD, so the idea she might’ve found it, another way of being, another way of thinking… honestly, I was jealous.

But even if I didn’t think there was anything wrong with her, other people did. Her mother was a registered nurse who’d regularly pull me aside and say: “Kathy’s mentally ill… Why her and not you? You both did drugs” And our friends would say: “She’s so far out there, she’s never coming back”.

In The Inward Journey, Joseph Campbell writes that: “a schizophrenic breakdown is an inward and backward journey… [the person with schizophrenia] has tipped over and is sinking, perhaps drowning…and his long deep dive to the bottom of the cosmic sea to pluck the watercress of immortality, there is one green value of his life down there. Don’t cut him off from it. Help him through.” This is, in fact, what other cultures do. Olga Khazan, writing for The Atlantic says that Eastern and African cultures tend to emphasize relationships and collectivism. There, a hallucination was more likely to be seen as just another point in the schizophrenic person’s already extensive social network.

But Kathy didn’t live in Asia or Africa. She had schizophrenia and lived in America, where she was isolated for it. Nobody else saw the poetry, the imagination, or the possibility of interstellar travel; they saw insanity.

She had schizophrenia and lived in America, where she was isolated for it.

Two years later, and her symptoms worsened. I graduated from high school, but she didn’t. One night, our friend Sam, who owned a local nightclub, took Kathy and I out to dinner at an Italian restaurant. It was famous in our hometown, and Sam knew everyone. Sam and I got pasta, but wraith-like Kathy only ordered a shot of whiskey. When our meals were served, she drained the glass, and then threw up in it; silently and casually.  Sam looked down at his plate, swimming in cheese and tomato sauce and said: “I can’t finish this meal.”

After we drove her home, Sam told me: “I can’t do this anymore.” I’d been her apologist for so long, but I couldn’t argue. I was exhausted.  I respected her visions, but in the face of so much scorn and fear, she really started to slip away. And it didn’t help that throwing up in a shot glass became a routine for her. I don’t know if she did it to shock people, or if she was genuinely nauseous, and I never asked. She did it again, the second time, at Sammy’s bar. After that, it became regular. Everyone avoided her.

Her parents chastised her. I think they had this idea that if she would stop doing drugs, everything would return to normal. And in our close knit Russian and Polish immigrant community on the banks of Lake Michigan, we all tried to hide what went on behind closed doors. Her parents didn’t bring her to see a doctor. Shame kept them from helping her. Shame kept Kathy trapped, alone and isolated.

The U.S. National Library of Medicine reports that the 1970s “was a decade of increasing refinement and specificity of existing treatments for schizophrenia. There was increasing focus on the negative effects of various treatments, such as deinstitutionalization, and a stronger scientific basis for some treatments emerged. For instance, the field of somatic treatments saw a greater and more sophisticated use of lithium.”

I was 19 when I left town, the same time when the lithium landed. Kathy was still a wraith, out of step with the world, but now she was sedated; the cord cut between her and her starman in the sky. Now she, not Bozling, was the alien on a cold planet.

Kathy was still a wraith, out of step with the world, but now she was sedated; the cord cut between her and her starman in the sky.

Cecilia McGough, an astronomy and astrophysics major at Penn State, and Virginia Aerospace science and technology scholar, recently gave a TED Talk about her schizophrenia. She makes the point that this illness is unique to each person; what is true for one person with schizophrenia may not be true for another. The disorder is a constellation of symptoms. She is hesitant, she admits in her TED Talk, to tell other people about her hallucinations because “people usually look at me in fear after I tell them what I see.” She defines her schizophrenia “as someone who cannot turn off her nightmares even when she is awake,” and refuses to acknowledge her hallucinations, even though her own personal Bozling–a Pennywise-like clown that only she can see–was in the audience for the TED talk that day.

I can’t help but wonder about how McGough has managed to accomplish so much, when Kathy struggled so profoundly. Perhaps it’s the meds; the drugs they diagnose people with today for schizophrenia are far less debilitating than the lithium that was used to sedate Kathy. Or maybe it’s McGough’s extensive social network, which “helps her through” her visions.. Perhaps together, this modern collectivism, along with better meds, have allowed her to move through this world in a way that Kathy, born in the wrong place and time, could not.

Kathy ended up alone.

Our tribe, before we left Kathy behind.

After Bozling was banished to the coldest, darkest parts of the cosmos, I heard, through friends, that she spent much of her time at a bar near the railroad tracks, throwing down whiskey shots until eight in the morning. One day, a few years after I moved to New York City, I went to visit her; she still lived at her parent’s house, where her family kept her hidden as much as possible. When I went into her room, she was playing Low by David Bowie. I was shocked by her appearance. She didn’t even look like the same person anymore; the lithium had changed the contours of her once striking profile. My olive skinned gypsy girl with the aquiline nose was gone, replaced by someone pale and hollowed.

Somewhere along the way, we had all failed her. It was partly the shame of our immigrant community where everybody knew everyone else’s business, or thought they did. It was also a time in the culture when mentally ill teenaged girls were hidden from the rest of the world; a mid-century version of the madwomen in the attic. Unlike McGough, she didn’t have a community who would try to understand the unique wiring of her brain.

Even I, her greatest advocate, couldn’t be exonerated from leaving her behind. In my last days in town, she had frightened me. I didn’t think she was tapped into a greater reality anymore. I saw how sick she had become. I wish I’d taken the time to speak candidly with her mother. I think we both hoped that the girl we once loved would spontaneously reappear. Neither of us ever said schizophrenia. As Campbell suggests, there wasn’t anyone to help her through: simply by listening, not judging. That was my role, but I had abandoned it.

About 15 years later, I went back to my hometown  for my grandmother’s funeral. Taking a break from the service, I went outside and smoked a cigarette on a bench, when a middle aged woman with a bad perm sat down next to me. I thought she was a relative. She didn’t say a word, just smoked in silence. Later, my sister said, Kathy saw you at grandma’s funeral. Why didn’t you say hi?

And then I knew: the woman sitting next to me was Kathy. Of course she looked like a relative. I’d once loved her so much.

Health & Fitness

Fighting Cystic Fibrosis With A Rumble And A Roar

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

It’s Good Friday 2011, and Paul Underhill, 41, is being wheeled into surgery at Toronto General Hospital. Instead of being fearful—a typical response to a double lung transplant—Underhill is cheerful. He’s singing.

“I’m on my way, I don’t know where I’m going, I’m on my way!”

Smiling from behind his rectangular, black-rimmed glasses, he sings me the Paul Simon refrain he performed for his nurses six years ago. Sandra Underhill, his wife of 19 years, joins in the singing, but she wasn’t sure what to make of her husband’s playfulness pre-transplant. She was still in shock from it all—numb from months of cleaning blood her husband coughed up, sometimes a cup at a time, and traumatized by all the ambulance rides, not knowing whether he would survive the wait for new lungs.

Born in Victoria, British Columbia, Canada, Paul Underhill was diagnosed at six months of age with cystic fibrosis (CF), a genetic disease that affects the digestive system and the lungs. In the 1960s, a CF patient was lucky to survive to age 10. Today, many still succumb before their 30th birthdays—fluid fills the lungs and hardens, gradually shrinking lung capacity until there is none at all.

Most people with Underhill’s type of CF don’t live to adulthood. The lungs that saved him arrived in the nick of time, the blessed news delivered by a nurse named Grace while Sandra’s father prayed for a miracle at the church across the road from the hospital.

It takes a special kind of person to face a seven-hour transplant surgery with a smile and a song. That’s Underhill—fearless, and a fighter.

It takes a special kind of person to face a seven-hour transplant surgery with a smile and a song.

“The question that is inside of me is ‘why not?’” he says. “What I’ve learned about myself is that I’m powered by possibility and passion for things that I love… I don’t let fear interfere with what could be.”

Growing up, Underhill performed his lung-clearing exercises twice a day, then participated in his favorite activities—running, soccer, and cycling. At age 15, he competed in the British Columbia Summer Games for cycling. At the University of Victoria, he met his wife and graduated with a bachelor of arts and a bachelor of laws.

“Paul always had a cough, ever since I’ve known him,” Sandra says, referring to the characteristic feature of a person with CF. “When you find a partner and you fall in love, you don’t think about things getting worse. I never thought about [cystic fibrosis being fatal].”

By his early 30s, Underhill’s health was deteriorating rapidly. He was forced to leave a job he loved with the provincial government, but he stayed active, even kite surfing as long as he could. (He maintains it’s the best lung-clearing exercise around.)

Paul Underhill designed his own drink, Rumble, to gain weight back after cystic fibrosis began shutting down his lungs.

To fill the void, he devoted himself to a new passion: keeping himself well nourished, which would aid his recovery come transplant day.

“I realized I couldn’t rely on my doctors, no matter how great they were, to keep apprised of the latest research,” he says. “You have to look at what the science is right now.”

Underhill poured through medical journals, researching new treatments for CF and lung health. Sandra helped, too, studying nutrition and the link between diet and disease.

“It’s not in Paul’s personality to sit back and wait for things to unfold,” Sandra says. “When he wants something, he goes full steam ahead—and he wanted to stay as healthy as possible.”

Combining their research, husband and wife noted a high correlation between inflammation and many degenerative conditions. Add to that evidence that CF patients with good nutrition have better lung function, and Underhill set out to concoct a nutritious super shake that his body could thrive on.

“I was looking for a beverage of the highest quality that was easy to digest. I looked everywhere and couldn’t find (what I needed),” says Underhill, who is diabetic in addition to having difficulty absorbing nutrients, because of his CF.

The recipe for what would eventually become the drink Rumble took six months to develop in the Underhills’ kitchen. The shake had to be gluten-, lactose-, and soy-free, low in sugar, and free of genetically modified organisms.

“Most important of all, it had to taste great. That’s what took so long in the kitchen, perfecting the taste,” says Underhill.

Rumble—named for the sound the body makes to declare its need for nourishment—comes in three flavours, Dutch cocoa, vanilla maple, and coffee bean, all naturally sweetened with organic maple syrup, organic agave nectar, and vanilla bean. Using organic oils as its base, the drink is light and fluid, not chalky, and has no aftertaste.

Once Underhill was satisfied with the shake, he realized he had a product he could bring to market. In 2008, he launched Rumble with three partners.

Throughout the process of creating the business, Underhill’s CF worsened. At one point, he needed two oxygen tanks to breathe. He couldn’t even brush his teeth without help. As he waited for a life-saving double-lung transplant, he relied on his shake for nutrients to keep his body as healthy as possible.

“The biggest risk pre-transplant is that you get so skinny you’re not going to do well afterward,” he says, noting that three years post-transplant, he was “two pounds heavier than the day I got transplanted, because Sandra made my shake, the essence of Rumble, every day.”

Underhill was living proof the drink lived up to its promise to be a nutritious, protein-rich super shake.

Rumble’s biggest challenge was finding a production partner who could work with its delicate ingredients like organic flax oil, which is rich in omega-3s and believed to reduce inflammation. The team persevered, determined the oil would remain an ingredient alongside pomegranate, red beet juice, organic spinach, kale, and Rumble’s signature protein blend.

“We searched for months until we found a partner who could work with organic flax seed oil,” says Underhill, noting the beverage is made in a secret facility in the Unites States.

Today, Underhill sells Rumble in Canada as a nourishing drink at over 3,000 grocery stores.

Rumble is also the first drink in Canada to be labeled a “nourishing drink” by the Canadian Food Inspection Agency. The category was created in 2012 just for Rumble, which didn’t qualify as a meal replacement because its ratio of omega-6s to omega-3s didn’t match CFIA guidelines. To be a meal replacement, a drink needs to contain a 4:1 ratio, but the Rumble team follows new research that shows the quantity of omega-3s should be double that of omega-6s for ultimate health benefits—hence the importance of the flax seed oil.

Branded aluminum bottles highlight the protein content – 20 grams – and the drink’s promise to “feed the good,” with its more than 3000 mgs of omega-3s, eight grams of fibre, 400 mgs of calcium, and natural fruits and vegetables.

In Canada, Rumble is available in more than 3,000 grocery stores and online on Amazon.ca. The company did a test launch of Rumble in the U.S. in 2015 and 2016 to great success; now, the Rumble team is working with a new production partner to prepare to re-launch online sales in the U.S. in 2018.

“Rumble didn’t exist when I was waiting for transplant, but what did exist was Sandra,” Underhill says. “She made my shake—the essence of Rumble—daily to keep me alive.”

“A lung transplant isn’t a cure. I’ve exchanged one set of difficulties for another.”

With new lungs and a new lease on life, Underhill forged ahead after his surgery. A year post-transplant, he won five gold medals in the Canadian Transplant Games. Two years post-transplant, he biked 750 miles for a fundraiser for Cystic Fibrosis Canada and helped raise hundreds of thousands of dollars for CF research.

Rumble has brought Underhill full circle: he developed the drink to keep himself alive, and now, the success of the business has become the perfect platform for him to advocate for both CF and organ donation to help prolong the lives of others.

Meanwhile, he continues to face health challenges. The anti-rejection medication he takes is harsh on his kidneys, which have been causing him problems. “A lung transplant isn’t a cure. I’ve exchanged one set of difficulties for another,” he says good-naturedly.

But like every other challenge Underhill has encountered in his 47 years, he faces those to come with a positive mindset. “When I meet a challenge, when I hear I can’t do something, I think ‘Yes, I can.’ If you want to see me do something, just tell me I can’t.”

Profiles

This Super-Smelling Pup Sniffs Out Students’ Stress

Each morning, Cali, a four-year-old Rhodesian ridgeback, greets pre-K through 12-plus students as they walk through the doors of The Calais School. She’s checking their stress levels.

The fifth grader was going to have a meltdown, but Cali–a cortisol detection dog that works full time at a school for children with special needs– picked up the scent from across the building.

She nudged Casey Roerden, her trainer, handler, and a health education teacher, at The Calais School. “Time to go,” Roerden said.

When the student spotted Cali heading her way, she got distracted. “Cali is a welcome distraction,” says Roerden.

The student turned her attention to the dog. Her anger dissipated. While her focus was on Cali, Roerden talked to her about her feelings and as a reward for calmly expressing herself, she got to pet the dog.

Sometimes, Roerden lets the students brush and walk Cali. Some of them talk to her. “It’s often easier talking to a dog than to a person,” Roerden says. “Cali never judges and is always calm. The students like being around her.”

It’s often easier talking to a dog than a person…

About 85 children attend The Calais School, based in Whippany, New Jersey. Many of the students are on the autism spectrum; some have attention deficit disorder, oppositional defiant disorder, and other challenges that can trigger anxiety and other difficult emotions.

Cali was trained to detect rising levels of cortisol, which is the stress hormone our adrenal glands secrete when we become anxious or stressed. When we are agitated, cortisol levels in our bloodstream rise and put out a scent that we can’t smell. Dogs, however, can. It’s Cali’s job to let Roerden know if a student’s cortisol levels are high.

“It’s their uncanny sense of smell that allows dogs like Cali to detect rising cortisol levels in our sweat or breath, and identify a student having trouble even in a faraway classroom,” says Nicholas Dodman, director of the Animal Behavior Clinic at Cummings School of Veterinary Medicine at Tufts University. “Humans have 12 million smell receptors in their nose. At the lowest estimate, dogs have 800 million. Scent hounds like beagles and bassets have up to four billion. A dog’s ability to smell odors is beyond our comprehension.”

Casey Roerden and Cali wait outside The Calais School each morning to greet the students. Photo: The Calais School

“We are proud of ourselves when we drive past Burger King and can smell that they are cooking burgers,” he says. “Dogs can smell a burger being cooked in the next town. That is why dogs are used to detect melanomas, diabetes, and other types of disease. It’s all about their sense of smell.”

Cali is one of three working dogs at The Calais School. Sage, a German shorthaired pointer, and Cleo, a beagle, are both rescues. They are part of the school’s Animal Adaptive Therapy program. Sage joined the program after Roerden adopted him. He works as a substitute for Cali. Both Cali and Sage live with Roerden.

Cleo works with the school’s occupational therapist. She helps students practice fine and gross motor skills. She often wears a vest with laces, zippers, and buttons. She and the occupational therapist teach the children how to tie shoes, zip zippers, and button buttons. A few of the students read aloud to her, too.

A dog’s ability to smell odors is beyond our comprehension… That is why dogs are used to detect melanomas, diabetes, and other types of disease.

“The dogs don’t bark, jump up on the students, and are always accepting,” says Roerden, who is also a certified specialist in natural canine behavior rehabilitation and in animal adaptive therapy.

Cali was brought to the school in 2013 from a local nonprofit called Merlin’s KIDS that trains service dogs to work with special needs children. “Some schools with a special-needs population have service dogs that visit and work with the students as a once-in-a-while activity,” says David Leitner, executive director of the Calais School. “We thought having a service dog on staff would benefit our students.”

A ninth grader agrees. “Cali can help us cope with our problems so that we don’t have to get through it by ourselves,” he says.

Sage and Cleo also come from Merlin’s KIDS, the school’s partner organization that has trained all of the service dogs. The handlers and service dogs in the program are rigorously trained. “Our animal handlers are certified in Natural Canine Behavior Rehabilitation through United K9 Professionals,” Leitner says. “More than 2,000 hours of training and behavior modification goes into completing the protocols required for each service dog and handler.”

The Calais School will expand its Animal Adaptive Therapy program. They have plans to bring on graduate level interns from Kean University and New York University majoring in occupational therapy, speech therapy, and social work to be trained in animal adaptive therapy.

School officials deeply believe that their Animal Adaptive Therapy program has been so beneficial that they welcome inquiries from other schools that specialize in working with children with special needs who want to create similar programs. After all, there’s nothing better than a dog’s love in your life to make all your other problems fade away.

The Good Fight

Clowning Around

Health care clowning is only around 30 years old, but these real-life Patch Adamses are helping kids face the unfaceable.

Karen McCarty, aka Dr. Gingersnap, was making the rounds at Memorial Sloan Kettering Cancer Center in Manhattan. A seven-year-old sat quietly in his hospital room. His mom, who was waiting in the hall, grabbed her and asked if she could spend time with him.

“The mom didn’t want her son to see her crying,” she said.

The child was scheduled to have his leg amputated.

McCarty walked into the room dressed in a colorfully decorated lab coat. “The boy looked at me and asked, ‘Do I have to do this?’”

She thought for a moment and told him, “I think you have to listen to the professionals.”

Then she asked him what he wanted to do right then. The boy wanted to jump on the bed. McCarty gave him the go ahead. Next thing she knew, she was jumping on the other bed in the room. They started a friendly pillow fight. The boy’s mom heard her child laugh for the first time in a long while. The nurses and staff on the floor heard the commotion, walked into the room, and laughed, too.

When the gurney appeared he hopped on without a fuss.

Hospital clowning can help kids face the unfaceable.

McCarty, Deborah Kaufmann, and Dina Paul-Parks have many more heartwarming stories to share. The trio worked as clown doctors with the Big Apple Circus Clown Care Unit, a community outreach program, co-founded by Michael Christensen, who established the program in 1986 in New York after losing a brother to cancer.

Professional clowns and theatrical performers worked in several New York and New Jersey hospitals bringing cheer to everyone they encountered. The Clown Care Unit was going strong until a couple of years ago; last year the Big Apple Circus declared bankruptcy and Kaufmann, McCarty, and Paul-Parks came up with a plan to continue the work.

“Together, we have more than 60 years of experience,” said Kaufmann, director of Training and Education at Healthy Humor, Inc., a nonprofit that she co-founded with McCarty, artistic director, and Paul-Parks, vice president of Community Programs.

While they haven’t retired their red noses, they spend their days running Healthy Humor, Inc., which has a roster of 50 performers who entertain children, their parents, and medical staff.

According to Kaufmann, Healthy Humor has partnered with premier pediatric hospitals around the country, including Yale New Haven Children’s Hospital, Memorial Sloan-Kettering Cancer Center in New York, Saint Barnabas Medical Center in New Jersey, and Children’s National Medical Center in Washington. The newest hospital, which makes 12, is Children’s Hospital of Philadelphia.

They plan on building relationships with other children’s hospitals, geriatric facilities, after school centers, and community venues “as we look to bring joy, wonder, and comfort to those in our world who are hurting and need it most,” Kaufmann said. “We’re also part of a global healthcare clowning movement where we collaborate with affiliated programs in France, Brazil, Germany, Italy, and Australia.”

“Healthcare clowning is new,” McCarty said, “It’s only 30 years old.”

“From my vantage point,” Paul-Parks said, “we’re not therapists or doctors. We’re performers who collaborate with doctors, nurses, and other medical professionals. We’re often utilized by our partners who understand our work.”

Clifford W. Bogue, MD, chief Medical Officer, Yale New Haven Children’s Hospital, said, “They bring a healing dimension that we as physicians and nurses can’t give and that is an ability to have a moment of happiness and lightheartedness even in the difficulty. I think there’s a lot of evidence that these non medical interventions make a difference in the care of children and adults.”

They bring a healing dimension that we as physicians and nurses can’t give…

Ellen Good, MSEd, CCLS, and manager of Child Life at Yale New Haven Children’s Hospital agreed. “They’re grownups, but not really grownups and the kids love that because they’re naughty.”

Being naughty and silly worked for one chronically ill little girl. She was told that if she didn’t walk, her doctors wouldn’t release her from the hospital. She remained in her room and wouldn’t budge. The clowns were on their rounds. When they didn’t show up around the same time that they usually did, the girl got angry. Her mom was frustrated and exhausted.

Karen McCarty, Dina Paul-Parks, and Deborah Kaufmann, co-founders of Healthy Heart, Inc.

As the clowns were about to enter the girl’s room, the mom grabbed one of them by the arm and told them she had no idea how cooperative her daughter would be. She wished them good luck.

The girl berated the clowns for being late. “The clowns told her tall tale after tall tale,” Paul-Parks said. “They told her the elevator didn’t work and that to reach her floor they had to climb on each other’s shoulders.”

The girl, who refused to walk, said, “Oh, really, this I gotta see.”

The clowns told her that she had to follow them down the hall to the place where they climbed on each other’s shoulders. The girl grabbed her pole, which helped her walk, and followed them down the hallway. She went home the next day.

What the clowns provide actually helps the curative process.

Good, at Yale New Haven Children’s Hospital, is impressed by how skilled the clowns are at being able to read a moment, a facial expression, and body language. She and Bogue believe laughter provides another dimension of healing.

“What the clowns provide,” said Bogue, “actually helps the curative process.”

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