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This Doctor’s Mysterious Brain Infection Taught Him Empathy Through Depression

Patrick Mbaya was always a good doctor, but it wasn't until he became ill himself and powered through the subsequent depression that he became a great one.

Depression can be debilitating for anyone. Patrick Mbaya, a medical doctor specializing in psychiatry, who has spent his professional life counseling others learning to cope with mental health issues, found himself on the other side of the consult when he became the patient.

Mbaya woke with ear pain and slurred speech one morning in 2010. Once at work and surrounded by medical colleagues who quickly confirmed his suspicions that something was indeed wrong, he went on to discover that he was suffering from a potentially deadly brain infection.

Along with his initial symptoms, he also suffered from right side weakness and subsequent depression. Being the patient for a change was a difficult transition for a physician who had previously never been unwell. His symptoms led to feelings of sadness and hopelessness, which actually helped him to understand his patients and their unique experiences more fully as he explains in his book, My Brain Is Out Of Control. He speaks to Folks about overcoming illness and living with depression.

Tell us about your early career and your interest in psychiatry.

I started to train in internal medicine. A medical school friend was training in psychiatry and showed me what they were being taught. I got very excited about the topic “neurobiology of mental disorders,” and went to join him.

Can you tell us about your brain infection?

My brain infection was a mystery, as no cause was found. It affected the vital parts of my left brain, including the speech center called the Broca’s area, this caused a loss of speech. It also affected the frontal cortex which caused right sided weakness, and inability to write, and the prefrontal cortex which was responsible for the onset of depression.

How were you impacted during this time by depression?

I found that I couldn’t control my emotions. I was crying for no apparent reason, I had irrational thinking, and I found it difficult even to deal with normal stress, especially in the mornings.

What were some of the main challenges you encountered?

Accepting that I was a patient, and not behaving like a doctor was very hard. I worried about whether I was going to recover, and if I did recover, whether my speech, my walking due to right-sided weakness, writing, and depression, would ever recover enough for me to go back to work, and live a relatively normal life.

What did your recovery look like?

My recovery was treacherous and had many setbacks. I was very excited when my speech, walking, writing, and depression, started to improve. However, when I developed low white cell count and severe hepatitis, this was a setback. It took me at least two years before I fully recovered.

Has your experience impacted the way you interact with your patients?

Yes, it has made me understand what my patients feel and, go through when they are ill. It has also made me more empathic. I now understand, and share their feelings.

Can you speak to the connection between mental health and social stigma?

Social stigma is a big problem. Some mental health conditions can present as abnormal behaviors, and unlike physical illnesses where you may see externally what’s wrong with a patient or do an investigation, this is not the case with mental illness. Patients may be deemed to have abnormal behaviors, and therefore are stigmatized.

How does having a mental illness affect your role as a doctor?

Fortunately, I recovered from my depression. However, as I am a doctor, and I did suffer from a mental illness, I feel this is important to talk about, as it will help reduce stigma. Literally anyone, regardless of profession, can suffer from mental illness.

What steps can we all take to protect and boost our mental health?

Keep fit! In my case, I have continued to do my exercises, listen to good music, which helps me “chase dopamine” which induces a natural high, eat a healthy balanced diet including proteins and omega 3, and avoid excessive alcohol consumption or the use of illicit drugs.

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

 

The Good Fight

From AIDS to Zika, New Books Teach Kids About Conditions

Whether Crohn's disease, lactose intolerance, or childhood depression, a growing number of children books feature diseases and ailments as their subjects.

In her picture book Even Superheroes Get Diabetes, author Sue Ganz-Schmitt tells the story of a boy named Kelvin who hates the constant fingers pricks and shots required by his diabetes. But with the help of a (medically accurate) insulin pump and a mysterious doctor, he becomes Super K, flying around the world with the doctor delivering insulin to other kids with diabetes.

Ganz-Schmitt wrote and subsequently self-published the story in 2007 after watching one of the families in her kids’ playgroup cope with type 1 diabetes. The son, Kaden Kessel, was weeks away from his third birthday when the family got the news. Suddenly his parents, who also had a newborn, had to constantly monitor his blood sugar to keep him healthy.

Sue Ganz-Schmidt, author of Even Superheroes Get Diabetes.

When Ganz-Schmitt searched for a story about childhood diabetes, she found picture books that offered comfort to families but nothing that went beyond comfort to actually inspire them. After attending events with JDRF, an organization that funds type 1 diabetes research, Ganz-Schmitt says she was struck by how empowered the kids were in speaking about diabetes, almost like real-life superheroes.

“When I first saw it, I was kind of in awe because … even though the kid becomes a superhero, he looks like me in the book and it’s based off of my story,” says Kessel, who’s now 17. The book was so inspiring to Kessel that he used it in sixth grade to become a sort of diabetic superhero himself, bringing it into school to defend a young classmate from being bullied for his diabetes in class.

While most picture books introduce kids to story and language, perhaps imparting a few feel-good lessons along the way, ones about medical conditions serve a deeper purpose.

While most picture books introduce kids to story and language, perhaps imparting a few feel-good lessons along the way, ones about medical conditions serve a deeper purpose: Helping kids with a medical diagnosis understand what’s happening to their bodies or educating young readers about medical conditions a relative, friend or classmate might have. Not to mention teaching empathy.

Cover of My Grandpa Had A Stroke.

Some of these books have such niche appeal that they’re self-published. However, the American Psychological Association has a publishing imprint called Magination Press that specifically publishes fiction and nonfiction books for kids and teens around mental health issues, including medical diagnosis and also topics like mindfulness and learning disabilities.

“With any kind of physical illness or mental health issue, there’s an emotional, social and mental component to that,” says Kristine Enderle, director of Magination Press. Its medical-themed picture books include Danny and the Blue Cloud: Coping with Childhood Depression (by James M. Foley, DEd, 2016) about a bear learning “Feel-Good Rules” for dealing with depression, and My Grandpa Had a Stroke (by Dori Hillestad Butler, 2007) about a little boy who must learn to adapt after his grandfather has a stroke.

Danny and the Blue Cloud, a book that teaches kids about depression.

“We try to empower kids,” Enderle says. “We never really want to tell them what to do or how to feel or how to fix it, but we hopefully provide them with enough information and context that’s all rooted in evidence-based psychology.” To that end, most Magination Press titles are written by child psychologists, counselors or other medical professionals and include a note to parents on how to talk to kids about these issues and organizations they can tap for additional resources.

“We feel like there’s great power in this information and understanding the psychological and emotional side of things,” Enderle adds.

Frank Sileo is a New Jersey-based psychologist who’s written several picture books for Magination Press. He got the idea for his first picture book (published by a different publisher, who’s now defunct) from doing biblio-therapy with his young patients. “[With biblio-therapy] you read a book to a child about a particular problem, talk about the problem, and it validates their thoughts and feelings,” he explains.

Toilet Paper Flowers, a book about Crohn’s Disease.

When patients asked for a book about Crohn’s disease, Sileo couldn’t find one. Instead, since Sileo suffers from Crohn’s himself, he decided to write a picture book and Toilet Paper Flowers: A Story for Children about Crohn’s Disease was born. In it, a little girl with Crohn’s disease spends so much time in the bathroom, she makes toilet paper flowers and shares them with her friend.

Sileo’s second book was inspired by a patient who was bullied for being allergic to regular daily milk, so Hold the Cheese Please! A Story for Children about Lactose Intolerance. The story teaches kids about lactose intolerance (not to be confused with an allergy, as Sileo points out) and encourages them to accept each other’s differences. “It’s hard to be a kid and not have those things [like milk],” Sileo says, peppering his speech with medical puns.

Ganz-Schmitt’s second book, The Princess and the Peanut: A Royally Allergic Tale, also tackles food allergies. When she self-published the book in 2011, some parents erroneously believed that food allergies were made up (like Santa Claus or the Easter Bunny, Ganz-Schmitt quips) and didn’t understand their severity. “I was just so astounded what those families [with serious food allergies] had to go through,” she says. “Every bite was walking into a minefield for them.”

Full cover of Even Superheroes Get Diabetes

Ganz-Schmitt hoped by that educating children about food allergies, even those who didn’t have allergies themselves, those children will look out for siblings, friends or classmates who could suffer serious consequences from exposure to allergens. “‘Oh no, Mom, you can’t put peanuts in those cookies!’” she says. “They get it immediately and they really join the community of people who care for these children.”

As for Kessel–the original Super K–he’s now the JDRF walk ambassador for the Los Angeles Walk and is working to get the Latino community to join the walk and gain better access to medical care, similar to how his picture book counterpart helped others with diabetes.

He went through a rough period around age eight or nine where he wondered why he’d gotten a disease that doesn’t run in his family. Now he takes a more philosophical approach, pointing that the perseverance people with diabetics learn helps many of them excel in elite sports and business. “It’s hard and it sucks sometimes and none of my friends have it–all of that is true–but I feel like it’s been a blessing in disguise because the things I have learned from it,” he says.

And it all started with a book. For further reading with your kids on living with conditions, we suggest starting with these:

  •    AIDS: “The Gathering Tree” by Larry Loyie with Constance Brissenden, illustrated by Heather D. Holman, Theytus Books, 2006
  •    Alzheimer’s disease:Always My Grandpa: A Story for Children About Alzheimer’s Diseaseby Linda Scacco, PhD, illustrated by Nicole Wong, Magination Press, 2005
  •    Autism: “All My Stripes: A Story for Children with Autism,” by Shaina Rudolph and Danielle Royer, illustrated by Jennifer Zivoin, Magination Press, 2015
  •    Cancer:When Billy Went Bald” by Julie C. Morse, illustrated by Alexandra Higgins, Skyscraper Press, 2012
  •    Crohn’s disease: “Toilet Paper Flowers: A Story for Children About Crohn’s Disease” by Frank J. Sileo, PhD, illustrated by Martha Gradisher, Health Press (NA), 2005
  •    Depression: “Danny and the Blue Cloud: Coping with Childhood Depression” by James M. Foley, DEd, illustrated by Shirley Ng-Benitez, Magination Press, 2016
  •    Diabetes: “Even Superheroes Get Diabetes” by Sue Ganz-Schmitt, illustrated by Micah Chambers-Goldberg, Dog Ear Publishing, 2007
  •    Down’s syndrome:47 Strings: Tessa’s Special Code,” by Becky Carey; illustrated by Bonnie Leick, Little Creek Press, 2015
  •    Food allergies: “The Bugabees: Friends with Food Allergies” by Amy Recob, illustrated by 64 Colors, Beaver’s Pond Press, 2009
  •    Food intolerances:Woolfred Cannot Eat Dandelions: A Tale of Being True to Your Tummy” by Claudine Crangle, Magination Press, 2014
  •    Lactose intolerance: “Hold the Cheese Please! A Story for Children about Lactose Intolerance” by Frank J. Sileo, PhD, illustrated by Martha Gradisher, Health Press (NA), 2009
  •    Leukemia: “Chemo to the Rescue: A Children’s Book About Leukemia” by mother-daughter duo Mary Brent and Caitlin Knutsson, Authorhouse UK, 2008
  •    Heart defect: “Riley’s Heart Machine” by Lori M. Jones, illustrated by Julie Hammond, Guardian Angel Publishing, 2012
  •    Post-traumatic stress disorder (PTSD): “Why is Dad so Mad?” by Seth Kastle, illustrated by Karissa Gonzalez-Othon and “Why is Mom so Mad?” by Seth Kastle and Julia Kastle, illustrated by Karissa Gonzalez-Othon, both Tall Tale Press, 2015.
  •  Stroke: “My Grandpa Had a Stroke” by Dori Hillestad Butler, illustrated by Nicole Wong, Magination Press, 2007
Essays

How I Beat Postpartum Depression

One in seven women experience postpartum depression. So the trick is knowing you're not alone. You just need to find your tribe.

“I cry so much I worry he will remember his childhood filled with tears. I cry because there are so many things I don’t want to forget—the way he pecks like a bird for my breast and sometimes mistakes his knuckle for me, his little knee bent while he feeds … his noises, his smell—oh God, his smell.”

“It’s just that sometimes I am a robot playing his mother. I still don’t know how to be his mother. I am always looking out of the robot’s eyes, never sure completely whether I truly feel this thing or that, or if it’s because I ‘should’ feel it.”

I wrote those words in my journal a few months after giving birth to my oldest son in 2010. The joy of bringing a new child into my family was often clouded over by moments of intense depression and anxiety, which lingered untreated even up to a year and a half later.

Sometimes I would write about “the robot.” On darker days, I wrote about hurting myself, what it would be like to just not live anymore. I was instantly aware of how selfish it sounded for a mother of an infant to think about killing herself. That guilt made the situation even worse—and of course, harder to talk to anyone about.

I was not supposed to feel like this.

I was not supposed to feel like this. My Facebook feed was filled with beautiful photos of softly swaddled, happy infants and mothers (in fact, I had put more than a few of those photos out there myself). Everywhere there were blog posts and even strangers in Target admonishing me to, “make every minute count” because “they grow up so fast.”

Was I supposed to make these minutes count, the minutes when I lay in bed, running a finger over my numb c-section scar and crying myself to sleep? I just wanted those minutes to be over.

As my baby grew older, I would structure my day around his naps, scheduling work that needed to be done in the hourlong scraps of time I thought I could rely on. When he didn’t fit into that schedule, I sank deeper into the hole. I was exhausted. There was never a time I didn’t feel like someone needed something from me, and there didn’t seem to be much left to begin with.

The author and her two sons today.

Complicating matters was the fact that I lived in a small town in Michigan. On the days I felt strong enough to advocate for myself and get help, I dialed number after number of psychologists and psychiatrists. I had the benefit of good insurance through my husband, but I was turned away due to not enough supply of mental health professionals to meet the local demand. One therapist told me, “I’ve got a waiting list for my waiting list.”

I called the local hospital one day and pleaded to be connected to someone who could help me. I was having thoughts of self-harm, I told them, but I wasn’t able to find a therapist who could see me. They asked if I had Medicaid to qualify for mental health services. I did not. They didn’t have any alternatives to the crossed-out list already in front of me, and I hung up, dejected once again. Moments later, my phone rang from my local 911 dispatcher. Was I OK? She had received a call from the hospital. How could she help? I laughed into the phone. “Can you find me a therapist?”

My phone rang from my local 911 dispatcher. Was I OK? I laughed into the phone. “Can you find me a therapist?”

When my son was about 15 months old, I finally got help. I started seeing a therapist once a week. It wasn’t a cure-all solution, and I still battled depression off and on. My therapist made me sign a contract that I’d call 911 or go to the ER if I had more thoughts of self-harm. I spent one January night sitting in the parking lot at the hospital, debating whether I should check myself in or not. Where would they send me? What would happen to our son? I was his primary caregiver in those days.

Slowly the fog lifted. With the help of my therapist, I was able to look at my situation with a bit more clarity and compassion. I needed help, and not just psychological help. I needed help taking care of my child, time for my own work (which had fallen by the wayside) and self care.

I didn’t know it at the time, but I also could have benefitted from a community that could help me navigate this transition into motherhood. I realized how isolated I had become. My family was scattered several hours away. I had few good friends in those days who were parents. I had always been so independent and self-reliant; the benefit of reaching out to a group of people who was going through what I was going through was a foreign concept to me.

The next time, I would change all of that.

In 2014, my husband accepted a new job in Texas, and I discovered that I was pregnant with our second baby. As we drove our loaded-up minivan across the country, I plotted how I would do things differently. And if I was lucky enough to escape postpartum depression this time, I vowed to do something to help other women in my situation.

If I was lucky enough to escape postpartum depression this time, I vowed to do something to help other women in my situation.

The first thing I did was create an online community, a private Facebook group, for other people who had struggled with postpartum anxiety and depression, and therefore could understand what each other were going through. Here we could speak openly and frankly in a nonjudgmental setting. I spread the word among all the parenting groups I knew, and instantly I connected with several people who understood my exact struggle.

That spawned real-life group therapy sessions, where local moms shared their stories with a local therapist, and we all helped each other come up with strategies and coping mechanisms.

I started volunteering for the Pregnancy and Postpartum Health Alliance of Texas, eventually earning a scholarship to study to become a postpartum doula specializing in helping mothers with postpartum depression and anxiety. I had never heard of a postpartum doula before—essentially, they provide the extra hands and hearts of a surrogate family member, coming in to help new mothers after the birth of their babies with everything from practical day-to-day tasks like washing dishes and playing with older siblings to just listening to moms and dads and their challenges.

These experiences opened my eyes to the heartbreaking reality of postpartum mood disorders.

Before when I struggled alone, I kept telling myself “this can’t be the reality for most women,” but unfortunately, in my talks with other mothers since them, I have found that suffering in silence is quite common. The American Psychological Association estimates that one in seven mothers experience postpartum depression.

The intrusive thoughts associated with postpartum anxiety and OCD are actually very common, and with help, can be managed and overcome.

We are conditioned not to talk about these symptoms. I learned that the intrusive thoughts associated with postpartum anxiety and OCD are actually very common, and with help, can be managed and overcome. However, because of headline-grabbing cases of women who harm their children due to postpartum psychosis (a rare but serious postpartum illness), we are frightened into not speaking the words that actually have the power to help us heal.

We have such a long way to go before women suffering from postpartum mood disorders are properly cared for and supported in a comprehensive, meaningful way and feel comfortable speaking their truth without fear, but I hope that essays like this in some way help to further the dialogue.

It’s almost guaranteed I will hear from other mothers after they read these words. Whenever I speak out about postpartum mood disorders (it’s becoming a bit of a soapbox for me), friends message me sharing their own stories that they too have suffered or are currently living in the shadow of postpartum depression or anxiety.

Talk to someone…you’ll be surprised at the number of people who will feel empowered by your act of strength.

For women living in rural communities or areas without access to mental health resources, my best suggestion is to talk to someone–a friend, your partner, your OB or physician. Maybe you can find (or form) a group like I did.

You’ll be surprised at the number of people who will feel empowered by your act of strength, even if you don’t feel very strong. Talking about postpartum mood disorders rather than living in the shadows is the first step toward taking away their power and finding your own once again.

Creative Commons photo by Barbara W.

The Good Fight

The World’s Only Classical Music Ensemble For The Mentally Ill

After his own career almost unraveled, Ronald Braunstein founded the Me2/Orchestra to help fight the stigma against mental illness in the classical music community.

Prizewinning conductor Ronald Braunstein had a much-heralded early career in the classical music scene that began to unravel due to his bipolar disorder. But his experience with this condition eventually led to the founding of the Me2/Orchestra: the world’s only classical music ensemble for the mentally ill (and their advocates).

The conceptual origins of Me2/ date back to 2007, when Braunstein, then living in Prague, observed the huge gap in music education between public and private schools. “I wanted to create an orchestra that was inclusive of students from all socio-economic levels. The idea never went anywhere in Prague but I picked up that seed a few years later in Burlington [Vermont] – only this time my heart was in it. The inclusion I sought had to do with mental health rather than economic disparity,” he says.

There was good reason why mental health was a priority: Braunstein had just been fired from a job because of his bipolar disorder. “I was in the process of sorting out my mental and physical health and I knew I didn’t want to get a job where I could be discriminated against again. I decided to create my own orchestra and ensure that it was a safe place,” he says, before adding, “I knew that if I was feeling so much pain from being discriminated against that there must be other people like me.”

 

Ronald Braunstein.

I knew that if I was feeling so much pain from being discriminated against that there must be other people like me.”

Braunstein, who was born in Massachusetts but raised in Pittsburgh, says that as a child his father took him to see a doctor, who diagnosed him with “bad nerves” and “prescribed some type of medication, maybe it was valium.” He adds how, “Over the years several people told me that I needed to see ‘a doctor,’ but this was during the ’70s when nobody spoke [about] mental health and I honestly didn’t know what they were trying to tell me.” For many years he contended with symptoms “but things started to get really revved-up in [his] early twenties.”

While studying at New York City’s famed Juilliard School his condition became severe. “I ate very little and didn’t sleep. I thought that food and sleep took away my brilliance. I experienced all of the classic bipolar behavior: delusions of grandeur, rapid pressured speech, irresponsibility in dealing with money, etc.”

However, he managed to graduate from Juilliard in 1978 with a degree in conducting. And at age 23, he became the first American to win the Gold Medal in the Herbert von Karajan International Conducting Competition in Berlin. This prize greatly boosted his early career and took him all over the world as a guest conductor at orchestras ranging from San Francisco to Norway to Japan. He later joined the Juilliard conducting staff.

Braunstein was first diagnosed with bipolar disorder in 1985. “I took a friend to his psychiatrist appointment,” he recalls. “And, through an odd turn of events, I walked away from that office with my own diagnosis.” He feels that the stigma surrounding mental illness has decreased since the time of his diagnosis, but “we still have a long way to go.” That said, he hasn’t encountered any stigma-related obstacles when trying to arrange a Me2/ performance. And he views the orchestra as helping to “change audience members’ perceptions” about the mentally ill by “showing what we are capable of in performances.”

Many believe a link exists between creativity and mental illness, and Braunstein notices a particular prevalence of bipolar disorder among the musically gifted

Many believe a link exists between creativity and mental illness, and Braunstein notices a particular prevalence of bipolar disorder among the musically gifted. Of brilliant composers likely afflicted, he gives a slew of examples: Schumann, Tchaikovsky, Mahler, Berlioz, Bruckner, Rachmaninoff, Elgar, Handel, Holst, Mussorgsky, and Rossini. Another prominent example is his favorite composer, Beethoven. He also admires Tchaikovsky, Johannes Brahms, Otto Klemperer (whose battle with bipolar disorder was well-documented), and Igor Stravinsky. Among his influences are Leonard Bernstein, Seiji Ozawa and, especially, his mentor Herbert von Karajan, the longtime conductor of the Berlin Philharmonic, who taught him “how to really hear the orchestra” while conducting.

Braunstein conducting the Me2/Orchestra.

Of his own dual experience with gifted musicianship and mental illness, he says: “When I am in a manic phase I can be brilliant, or so it seems. When I come to a more stable point I can see whether the brilliance was actual or an illusion. And then there’s the question I always have after conducting a great concert: whether it was my musicianship or my illness.” He says that his symptoms are managed more effectively these days and are less likely to distort his self-perception. Previously, he was more inclined to have a “lack of insight into how [he] was doing” and hold an unrealistic opinion of his performance.

The question I always have after conducting a great concert [is] whether it was my musicianship or my illness.

The flagship chapter of Me2/ was established in September 2011 in Burlington, Vermont. September 2014 saw the launching of the Boston chapter. Though many members have diagnosed conditions, Me2/ also includes those who support the mentally ill, along with mental health professionals, such as one psychiatrist who plays trumpet for the Boston orchestra.

Me2/ has performed at several formidable venues, such as prisons and psychiatric hospitals – settings that don’t exactly evoke thoughts of classical music, but actually have provided the most engaged and appreciative audiences. In such places, the music “reaches their souls,” observes Braunstein, who adds how Me2/ has “never been unappreciated” at any type of venue.

 

Currently, fifty musicians belong to the Me2/Burlington, and the Boston chapter has 35. The orchestras perform 5 or 6 times per concert season. Of the musicians who join, almost all stay for a long period. There are no auditions to worry about. Braunstein’s programs are “designed for the middle-level of the orchestra. For the people who are less experienced, we offer coaching but technical perfection is not what we are about. We have professional musicians sitting alongside near-beginners and it works.” Many other members are skilled amateurs who “received extensive training earlier in life.”

Among mentally ill members, conditions range from depression to PTSD to schizophrenia to dissociative disorder, among others. Members aren’t required to disclose their diagnoses, but some do so “within the first 5 minutes.” Others are less than forthcoming at first. Braunstein recalls one member who “didn’t want her name printed in materials because she didn’t want to be associated with ‘the mental health orchestra.’ She didn’t disclose her diagnosis for a long time; however, after playing with us for a few years she has now become an outspoken advocate about erasing stigma.”

Though a few members prefer to keep to themselves, many others become friends and socialize outside of Me2/. Braunstein describes rehearsals as “extremely social” and adds that the “positive energy is palpable.” He recalls one man who, after a few months with the orchestra, had reconnected with his long-estranged extended family because Me2/ “gave him the confidence and self-respect he needed.”

Another member considers each Me2/ rehearsal his “detox” from the remainder of the week. And for some members with a tendency to self-isolate, the orchestra “gets them out of the house and surrounded by supportive friends once a week.”

Braunstein currently lives in Burlington, Vermont, with his wife, Caroline Whiddon, a Me2/ cofounder who serves as Executive Director and also plays the French horn. They drive back and forth from Burlington to Boston each week, as the Boston orchestra rehearses every Monday and the Burlington one every Thursday.

“[Music] is a space to be in that is safe and beautiful… it has given my life meaning.”

The conductor’s future aspirations are “to continue to grow and learn as a musician and a human being. Me2/ is my project for life.” His life-project has grand plans in store: A Me2/ chapter has just launched in Portland, Oregon, and Braunstein anticipates another chapter launching this summer in Atlanta, Georgia. In three years, he hopes to have 20 affiliate programs in various cities. Ten years from now, he sees Me2/ having “affiliate programs nationwide, including orchestras and various ensembles.” He also envisions “hosting conferences where Me2/ members from various locations come together to rehearse and perform in massive events.”

Though some afflicted persons might view music as an escape from psychological duress, Braunstein prefers to think of music as “a space to be in that is safe and beautiful.” When asked about the effect of Me2/ on him personally, he concisely replies, “It has given my life meaning.”

Me2/ is open to ages 13-80+ and there’s no cost to participate. For further information, see the website.

Profiles

The Adopted Artist With Her Head In The Clouds

Anxiety, depression, and the nature of memory intertwine in Andrea Joyce Heimer's unforgettable paintings.

Like many young artists, Andrea Joyce Heimer spent her early twenties stuck in an office job that she didn’t like while she tried to find her creative voice. Unable to afford art school, she was determined to teach herself to paint in a photorealistic manner — the only style she thought could convey the adolescent memories she wanted to depict. But no matter how many instructional books she bought or how hard she tried, she couldn’t master perspective. Eventually, she quit out of frustration.

Andrea Heimer.

Around the same time, Heimer, who had been struggling with anxiety and depression since high school, fell into one of her deepest depressions. She couldn’t get herself out of the house for weeks. “It was like I just hit a wall,” she says. “I thought, ‘I’m going to off myself unless I figure out something to keep me busy.’”

Still surrounded by art supplies, Heimer decided pick up a brush again. This time, however, she wasn’t going to worry about what the painting looked like. She told herself, “I’m just going to do it how it comes out. I’m going to return to childhood where I just draw for the fun of it.”

She ended up painting four pieces. The paintings were all flat, with no shading and the perspective was skewed. But there was something appealing about them. With encouragement from her husband, she reached out to some folk art galleries and received a positive response from the first place she contacted. She was still stuck in a depressive loop, but that positive reply gave her just enough of “a little oomph” to make another painting and then another. Slowly but surely, that momentum built on itself, eventually pulling her out of her dark hole.

Having dispensed with spatial perspective, her paintings are filled with layers of detail, all floating on the same plane

Today, Heimer is a full-time artist, splitting her time between an MFA program in New Hampshire and her home in Washington. Having dispensed with spatial perspective, her paintings are filled with layers of detail, all floating on the same plane. Objects and characters that might otherwise be hidden are brought into view, unveiling the mystery and violence hidden just below the surface of suburban neighborhoods. The effect is akin to Grandma Moses meets David Lynch. In her acrylic world, ordinary rites of passage collide with mystical rituals: cult members argue over wallpaper choices, giant wolves suckle teenage boys, and a devoted husband drinks his wife’s bathwater. At the same time, kids get bowl cuts in the living room, bad boys hang out at the baseball diamond “being dangerous and irresistible,” and girls cultivate crushes that are mythical in scope.

Often only 16 inches by 20 inches, or smaller, her paintings reward viewers who pause for a closer look. Minute patterns on wallpaper and clothing reveal themselves to be cowboys and Indians, thunderstorms and rainbows, or a starry cosmos of planets and comets. These repeated patterns are therapeutic for Heimer. Even when the painting doesn’t aesthetically need the patterning, Heimer needs it. “For someone who has tendencies to overthink things, it’s such a relief to go do something repetitive,” she says. “It’s that meditative process of drawing the same tiny design over and over and over again–you can lose yourself completely for two hours just doing that.” To paint these details, she leans close to the canvas, keeping her face only an inch away from the surface. “I’m sure that’s terrible for my spine,” she says. “But it’s that intimate time spent with that object that breathes more life into it. I miss that when it’s not there.”

It’s that intimate time spent with that object that breathes more life into it.

Heimer began developing a keen eye for detail early on. When she was in third grade, her parents pulled her aside after dinner and told her that she was adopted. Visibly uncomfortable, they kept the conversation short, and didn’t discuss it again. Determined to never be surprised like that again, she became a studious observer of life in her hometown of Great Falls, Montana.

“You’re going along, you have this normal life … and then all of a sudden you find out that your parents aren’t who you think they are,” explains Heimer. “Then that opens a door. You’re like, ‘Okay, well what else isn’t what it seems?’’’

Great Falls sits on the northern Great Plains, surrounded by vast stretches of open prairie. “You can literally find the edge of town and go stand there. There’s nothing beyond it, which is an unnerving thing,” says Heimer. The neighborhood she grew up in, however, felt like a typical suburb. She lived a couple blocks away from her elementary school. There was a park across the street from their house and beyond that a golf course.

Heimer would spend hours riding her bike past the houses, coming up with narratives about the lives inside. “I don’t know if there’s some underlying perversion in me, or something. Maybe it’s a normal tendency. You ride the same route and you start noticing the same people and you wonder, ‘Are their lives like my life?’”

Heimer at work in her studio.

As a goth teenager, she’d go to music shows and sit in the parking lot because she was more interested in listening to people’s conversations than the bands inside. “I would sit in my car a lot with the window down pretending to read a book or something, but really I was listening to the people who were standing next to my car talking,” she says. “Saying it now, I’m like, ‘God, what a weirdo. Just go talk to somebody like a normal person.’”

All those years of listening have turned into a wealth of stories to draw upon — and led to conversations that Heimer could never have predicted as a teen. “The paintings are almost like — this is going to sound so stupid — but I feel like each one has its own personality or its own magnetic force,” she says. “I feel like they’re little people trying to help me along.”

I feel like each [painting] has its own personality or its own magnetic force… like they’re little people trying to help me along.

The lively, diary-like revelations in her paintings seems to help others open up as well. “I don’t know if it’s because a lot of them are very embarrassing, but you would not believe the things that people tell me at openings,” she says. “After a two-minute conversation, they’ll confess something really deep or embarrassing or touching. I wasn’t expecting those interactions, and they make me feel good in a way that nothing else does.”

Heimer has found that these moments of connection give her a sense of buoyancy that helps counteract the weight depression. She is pursuing her MFA in part so that she can teach part-time and make interacting with others a more regular occurrence. “I realized that I was spending eight hours a day alone in the studio painting. That’s not healthy either,” she says. “I totally love being around art students. It’s another magical thing, being around other people who are making things and learning.”

“I don’t want to be super dramatic and be like, ‘It’s given me something to live for,’” says Heimer of her art. “The pace and the momentum of it, I think, help. I still have medication. I do all the stuff that I’m supposed to. But there’s something about that forward momentum. It doesn’t have to come from a painting career. It can be anything that you care about that propels you forward.”

Profiles

Guarding His LGBT Kids Against Depression

1/3rd of LGBT teens have attempted suicide. That scary statistic is why Evan Peterson is putting his kids' mental health first.

Growing up, Evan Peterson never felt he could be himself. Living in small-town California with a homophobic stepfather, Evan kept quiet when he realized he was attracted to boys as well as girls. Confusion and loneliness took its toll, culminating in clinical depression and a suicide attempt.

Now a single parent, Evan is determined not to let history repeat itself with his own family. Of Evan’s four children, three identify as LGBT. Lane, nineteen, is bisexual, while Jamie and Elliot, sixteen and twelve, are transgender. Their younger sister, Grace, is nine. (All names of the children in this piece have been changed at Evan’s request. – Ed.)

It’s a role he might not have expected but one he’s well equipped for. Evan spent the best part of the last two decades becoming more and more involved in the LGBT community, where he routinely speaks out against injustice and bisexual erasure as a writer with Bisexual Books

Evan Peterson is a writer on LGBT issues, as well as the parent of four kids.

“Finding where we’re marginalized and speaking about it and trying to give us a voice. That’s where I am now: I’m that guy,” he says.

He wasn’t always that guy. Around the age of eleven, Evan realized he was bisexual. The realization confused him: a situation exacerbated because he couldn’t discuss his sexuality with his “openly homophobic” stepfather.

“When I was a teenager I didn’t really trust my parents at all, I wouldn’t share any sort of problems I was ever having. At that time the word bisexual wasn’t a thing, people didn’t talk about that, just, you’re gay or you’re straight. I was really confused throughout my teens, I just considered myself straight and I was confused as to why I was also attracted to guys.”

His inner turmoil and sense of isolation made him deeply unhappy.

“When I was in the closet, I felt confused. I felt like I was drowning and miserable and had no way to come out of it. I self-medicated with alcohol and promiscuity. I attempted suicide – no one ever found out.”

When I was in the closet, I felt confused. I felt like I was drowning and miserable and had no way to come out of it.

Leaving his hometown for a new life on his own in southern California changed everything.

“I was twenty-one, sitting on a beach by myself after dropping everything and moving to the coast. The sun was a pre-dusk buttery yellow, and I found myself admiring the other people around me. For the first time, I felt no guilt or shame. I felt lighter and free. From that day forward I opened myself up and remained true to myself. [My new life] came with its own worries and complications, but it also filled every part of me with peace, with bliss.”

Evan began coming out to friends, and let his family find out through the grapevine. The relief of being open about his identity improved his state of mind. While  he still battles depression –he received a formal diagnosis in 2004– knowing who he is has given Evan the resources to tackle his mental health.

“I am a happier person having allowed myself the strength to be myself,” he says

Day-to-day, Evan manages his well being by taking a daily dose of Welbutrin, and by writing, which channels his energy into creativity. He also leans on friends, some of whom are far flung but still keep in close touch.

But even more important to Evan than his own mental health is that of his kids. LGBT youth are three times more likely to suffer from mental health problems than straight and cisgender kids. A third of LGBT youth have also attempted suicide. Harrowing figures like this have made Evan hyper-aware that supporting his kids.

LGBT youth are three times more likely to suffer from mental health problems than straight and cisgender kids.

“I’ve always raised the kids as [an] openly bisexual [parent], and we’ve always had queer friends around. The kids have always known that home is someplace that is safe, so it was easy for all of them to come out when they decided to come out. I think they felt reassured they’d have a supportive home here. They still come to me with problems and that’s a good sign.”

A small but significant part of that support is respecting Jamie and Elliot’s chosen pronouns. Jamie and Elliot prefer “they/them” pronouns, which Evan says some find confusing, or even use as a way to bully or belittle. At home, though, everybody respects Jamie and Elliott’s personal pronoun choice.

It’s important to Evan Peterson that his children be given constant acceptance and support, so they don’t grow up with the same depression issues he did.

Evan also respects his children’s chosen gender identities. Jamie, born female, is treated like Evan’s son. Elliot, meanwhile, doesn’t consider himself to be a boy or a girl. “Elliot’s still twelve so they’re still figuring all these things out. But they’re pretty open about it.”

Outside of his home, though, Evan has less control. Both Elliot and Jamie face a constant onslaught of negativity from schoolmates and extended family members. As a family, it’s something the Petersons work hard to address: by going to therapy, and by openly discussing what’s going on with their mental health..

“We do talk about [mental health], mostly as me checking in on the kids and how they feel their progress is in counseling, or if there are new issues they need help working on. We also discuss the ways we see other people, in reality or in media, treat themselves or others with mental health issues.”

Evan is a strong role model. But away from the safety net of home, there are some problems that are beyond his control.

“Most of Jamie’s friends have been really supportive through the whole transition, accepting Jamie’s name change and using the right pronouns, so that’s been positive. However, Jamie has also been the recipient of all the bullying you could expect to have at a high school when you’re a transgender kid, with other students deliberately misgendering them and name-calling.”

School’s a little easier for Elliot, who goes to an alternative school, where most of the students hail from left-leaning, hippy-type families.

“Elliot dresses mostly like a typical boy, but many of the kids don’t really dress or act like they conform to gender or societal norms anyway, so Elliot fits in no matter how they identify. I’m worried about Elliot going to high school because that will be a stark change for them.”

The family is concerned about the current political climate, which Evan says is swerving far from LGBT rights and acceptance.

“We have a lot of uncertainty about what our future looks like; how much support we’ll have, how many of our rights will still exist or be taken away; there’s a lot of fear about that right now.”

“I don’t really see [my depression] as negatively affecting my parenting; if anything, the kids drive me to keep going because they need me.”

He’s particularly concerned about Jamie, as the current climate could have a direct impact on their physical and mental health. It’s recommended that transgender children start on puberty blockers by around sixteen. Jamie’s hoping to start taking the blockers soon… something that in today’s political climate could stop being supported by insurance companies.

“There’s a lot of excitement, because maybe that will go forward, but also fears: what if we start puberty blockers and then lose that ability [to fund the treatment through insurance] in the next few months?”

The powerlessness over their fate in the face of political change has caused both Jamie and Evan a lot of anxiety.

“As they get older the amount of things you worry about grows and the worries are more severe and more complicated. I long for the days when my biggest worry with Jamie was something like crossing the road, or losing sight of them in the crowd for a few minutes. Not that I miss Jamie being anything other than what Jamie is now, but I miss the more simple worries that you have with the younger kids.”

Navigating this path as a single parent can be difficult and lonely, Evan says. “When there are problems it can feel overwhelming because you don’t have a partner to lean on, to vent to or give you a break. I’m less miserable than I was when I wasn’t a single parent though, so I take the good with the bad.”

“I don’t really see [my depression] as negatively affecting my parenting; if anything, the kids drive me to keep going because they need me.”

But life’s mostly good, he emphasizes. He wouldn’t change who he was, or who his children are for anything. And like any parent, he just wants his children to be happy.

“It’s more important than anything else. Happiness is the most important thing for me. That would tell me that they’re at their best emotionally, they’re content with life – and it’d give me less to worry about.”

Histories

The Late President of Protest

Folk singer-songwriter Phil Ochs gave voice to the righteously rebellious 1960s, while trying to keep his depression in check.

There’s no place in this world where I’ll belong when I’m gone
And I won’t know the right from the wrong when I’m gone
And you won’t find me singin’ on this song when I’m gone
So I guess I’ll have to do it while I’m here

 – “When I’m Gone,” Phil Ochs

“I just can’t keep up with Phil,” Bob Dylan once said of his friend and fellow folk singer, Phil Ochs, who was just one year Dylan’s senior. The two met in the early 1960s New York music scene, cementing their fates—and often, their respective legacies—as forever intertwined. In the 2010 Ochs documentary, There but for Fortune, cultural commentator Christopher Hitchens noted that while anyone can like Dylan, many do not even know who Ochs was.

By the time he was 30, singer-songwriter Phil Ochs had written hundreds of protest anthems including “I Ain’t Marching Anymore,” which covered by folk heroes Arlo Guthrie and Richard Thompson, and “Love Me, I’m A Liberal,” which was given the punk treatment by performers Jello Biafra and Mojo NIxon. Joan Baez, Billy Bragg, and even Pearl Jam have all paid homage to Ochs’ powerful legacy by playing his songs. When Ochs died at age 35, the size of the FBI’s file on him resembled a novel.

Ochs was no ordinary rebel. The El Paso, Texas-native was born in 1940 to a homemaker mother and physician father who struggled with depression and mania. To escape his volatile home life—his joyless mother, a nouveau riche Scottish immigrant, was said to refer to her children as “you stinking Americans”—he devoured stories of lone heroes found in Westerns. One of his favorite movies was Rebel Without A Cause.

Ochs and his brother, Michael, were always aware of how their family history might impact their health as adults. Phil was prone to depressive symptoms and mania from his youth. In There but for Fortune, Michael notes that he and Phil had an unlikely (and they hoped, unnecessary) brotherly pact to never commit the other, no matter the circumstances.

“The source of our liberty…”

After high school, Phil Ochs enrolled in the journalism school at The Ohio State University and worked for the school newspaper, though he was later demoted for his fiery political columns and eventually dropped out of college—but not before winning his roommate’s guitar on a bet that John F. Kennedy, not Richard Nixon, would win the 1960 election.

As he moved into adulthood, Ochs maintained a reputation as something of a hothead, prone to alienating loved ones. But he was also considered a brilliant, rising star who attracted plenty of likeminded rabble-rousers. “A democracy should turn you on,” he enthused of political activism.

He would stay up late reading headlines from which to draw songwriting inspiration. Some of his most famous song lyrics were ripped straight from the headlines or inspired by his fellow anti-war artists. “Outside of a Small Circle of Friends,” for example, was inspired by the 1964 murder of Kitty Genovese, whose neighbors heard her screams for help but did nothing to intervene. Lamenting the violence in response to the 1963 civil rights protests at the Birmingham, Alabama jail, he wrote “Talking Birmingham Jam.” “The War Is Over,” inspired by Beat poet Allen Ginsberg’s declaration that the war would end if enough people proclaimed it over and finished, became an anti-war anthem.

He also penned popular songs such as “Love Me, I’m a Liberal,” a biting satirical critique of the lip service some supposed progressives give to causes while doing little to actually support them. Some songs were more personally motivated, such as “Jim Dean of Indiana,” a heartbreaking tribute to one of his cinematic heroes, James Dean.

The writer Richard Just notes in a recent piece for The Washington Post that Ochs is the folk singer all Americans need in a time of sociopolitical upheaval. “As we enter the Trump era, and as a new mass protest movement begins to take shape,” he explains, “[Ochs’] music would be worthy of a revival.”

“Taken together, his songs offer an exceptionally compelling tour of the deepest questions currently confronting liberals—questions about democracy, dissent and human decency in a grim political age,” Just adds.

Despite the birth of his only child, daughter Meegan, Ochs continued his restless touring and demanding performance schedule throughout the early and mid-1960s. Those who knew him best said he never turned down a benefit request, eager to play in support of worthy causes—and often, because those offered a larger audience than commercial shows. As the early ‘60s wore on, he played the landmark 1964 Newport Folk Festival and inked a deal for a new album. Somewhere along the way, England’s Melody Maker magazine dubbed him the “president of protest.” (Bob Dylan was named the king of the same.)

A 2017 Pitchfork review of Ochs’ 1965 album, I Ain’t Marching Anymore, explains the songwriter’s ongoing sense of urgency. “To Ochs, there was no time for subtlety,” explains editor Stacey Anderson. “He sets his agenda firmly in the title track—an opener that rouses and incites despite a pallor of exhaustion, regret, and fear.”

To Ochs, there was no time for subtlety.

Ochs did derive some satisfaction from his tumultuous but satisfying personal life. He loved being a father, his estranged widow Alice explains in There But For Fortune. “It was safe to love a child,” Alice noted of Phil’s past familial pain and his ability to parent so happily in spite of a fractured relationship with his own mother and father.

Fatherhood did not dampen his political activism; if anything, it kept him fighting ever harder for social change. In 1968, along with his perhaps more famous political prankster co-founders, Ochs helped start the Youth International Party, the so-called Yippies who made headlines thanks to the street theater antics of Abbie Hoffman and Jerry Rubin. When he was called to testify at the trial for the Chicago Seven accused to inciting riots during the anti-Vietnam protests at that year’s Democratic Convention, Ochs recited the lyrics to his protest anthem, “I Ain’t Marching Anymore.” (The judge wouldn’t allow him to actually sing it in the courtroom.)

The album cover to Ochs’ “I Ain’t Marching Anymore”

Even as he began battling symptoms of mental illness in earnest, Ochs didn’t want to give credit to his mania for any of his songwriting or performance success. Still, according to Marc Eliot’s 1979 Ochs biography, Death of a Rebel, Ochs wrote all the songs for his 1969 album Rehearsals for Retirement in just two weeks.

There are debates about what tormented Ochs as the ‘60s waned and the ‘70s approached. When you believe your generation can change the world and that momentum falls short of the radical revolution you anticipate, how do you continue to move forward? It wasn’t a struggle unique to Ochs but one shared by many of his contemporaries. Still, the promise of the 1960s counterculture seemed to hit Ochs harder than most when some of the highest goals for human rights and equality still seemed out of reach.

As it was for so many, the 1970s were hard on Ochs. And as is so often true, it’s hard to know what caused Ochs to start experiencing the symptoms of bipolar disorder.

As his health deteriorated and his career seemed uncertain, Ochs took a series of what he thought might be restorative trips to other parts of the world, including several countries in Africa, where he was among the first Americans to record on the continent. While in Tanzania, robbers mugged and beat him one night, his vocal chords crushed in the assault. The random violence, while physically devastating, had a darker psychological impact on an already shaky Ochs, who swore his assailant was a CIA operative. (His fears were not totally unfounded; his friend, the Chilean protest singer Victor Jara, was brutally murdered by dictator Augusto Pinochet’s army in 1973.)

As Ochs’ voice partially healed—he never regained the high end of his vocal range—he continued to perform and record sporadically but became increasingly paranoid and was never able to shake the demons that began to haunt him daily. He took on an alternate identity, John Butler Train, and became ever more divorced from the man he’d once been. He hung himself in 1976, leaving a rich legacy of music and activism to inspire the generations to follow.

In “That Was the President,” Ochs wrote of President John F. Kennedy’s assassination what could also double as his own eulogy:

Here’s a memory to share, here’s a memory to save
Of the sudden early ending of command
Yet a part of you and a part of me is buried in his grave
That was the President and that was the man

 

The Good Fight

Ghana’s Purple People

In Ghana, where mental health issues are widely misunderstood, a homespun support group helps people suffering from anxiety and depression.

Ceiling fans, planes flying above her hostel and anxiety over school work used to send Sandister Tei into a state of panic and shakiness.

When she went to a local doctor in her home country Ghana to try find out why she was having strange thoughts and these physical reactions to them, she was told she had malaria–a common disease caused by mosquito bites in this West African country.

At 19, she knew this diagnosis was wrong. She knew what malaria felt like, but didn’t see the connection to her current state.

Sandister Tei was 19 when she started suffering from anxiety attacks. She was diagnosed with malaria instead.

“Being nervous and panicking about things, I didn’t think malaria could do that to me.”

So, she did her own research on Google and happened upon the word “serotonin,” telling her that what was going on was more likely to do with a chemical imbalance.

It got her thinking about how she was as a child, she often suffered  fatigue and would worry a lot. People would accuse her of being lazy, or that she kept to herself too much. Her school work suffered as did her self-esteem. Thanks to Google, she had some light thrown on her situation.

“I did more and more reading and realized this thing is not as exclusive: there are others out there,” Tei, now 30, and an online journalist for one of Ghana’s top media houses, recalls.

Journalism Leads To A Proper Diagnosis

She found ways to try and cope and deal with her mental health problems, but it affected her university life. She was studying geography at the University of Ghana when she started working towards a career in journalism, kicking it off with the student rags and local newspapers.

She then started blogging, and posting on Facebook, which lead her to wanting to work in online journalism.

“Being nervous and panicking about things, I didn’t think malaria could do that to me.”

Tei sought out opportunities to learn more about online journalism, with her eyes set on studying outside Ghana, as she did not see any courses within the country that had this focus.

In 2013, Tei landed a scholarship to do her masters in journalism at Cardiff University in Wales.

It was in Wales that she went to another doctor and was properly diagnosed with depression.

That diagnosis and the treatment turned her life around, her grades improved as did her energy levels. It got her thinking about the years she suffered in Ghana, because no one was able to tell her what was going on with her health.

“If I had someone to tell me to go to the hospital to get this drug, maybe I would not have suffered this much needlessly for like ten years. So that is when I thought I should be able to tell people about this, to help somebody. I am not going to administer drugs, but tell them you might want to go to hospital because there is medicine for your problems.”

When she came back to Ghana in 2015, she felt it was only people who knew about mental illness that would speak about it.

There wasn’t too much education available on mental health. “It wasn’t a national conversation,” she found.

This is something the experts echo. In 2016, Executive Director of the Mental Health Authority, Dr. Akwasi Osei, told local media mental health care in Ghana needed critical attention. He said  Ghana’s doctor-patient ratio in the mental health sector stands at 1:1.7 million as compared to 1:1 million in Nigeria and 1:50,000 in Kenya. He quoted a report that suggested  41 percent of the population, predominantly women, suffered from mental distress and depression.

41 percent of Ghana’s population, predominantly women, suffer from mental distress and depression.

In late 2016,  nurses from the Accra Psychiatric Hospital went on strike to highlight how dangerously underfunded the facility was. It is often in the news for not having the means to feed and medicate its patients. In the capital Accra, it is hard not to notice the number of mentally unstable people left to fend for themselves on the streets.

With this context, Tei decided to start a mental health support group in Accra.

Ghana’s Purple People

A friend organized a free space for her to hold the meetings, and she named the group Purple People – an affirmative name for an affirmative group.

“When you are depressed, anxious or when you are in a very bad mood, people say you are feeling blue. Purple has some blue in it, and the color purple is linked to royalty, well-being, affluence, goodwill. A lot of positive things. I think that even though we are ‘blue people’ we have the potential to crossover to the purple space.”

There are about a dozen members, they can meet each week, whoever feels like meeting, can do so.

Tei Sandister founded Purple People as a way to help raise awareness of mental health in Ghana.

Tei keeps contact with the members in a private Facebook group, and then has a public page to post articles on mental health and to advertise the group meetings if people want to join.

Purple People seek to listen to each other on common experiences, share and shed light on coping strategies to help each other while also encouraging members to seek professional help.

Since she advertises the group through social media and a blogger email list, she has found most of the members are professionals in Ghana, aged 27 to about 36. There are health care workers, an entrepreneur, software engineer, an environmentalist and Tei is a journalist.

While the group members are well-educated, living in Accra, eventually Tei wants to be able to target those in this country who might not have the same access to information.

“With Purple People, all of us can speak English and all of that but at a certain time I will focus more on people who can not speak English or even access Google, or don’t have the internet.”

She plans to try spread the message of her group in one of Ghana’s local dialects–Akan, through local radio stations in the future.

With the current formation of Purple People, she says, people don’t just connect in the weekly meetings. 

“There have been times people will write there [in the Facebook group] they are feeling really bad and need help – can someone get to them. I don’t want to call it a hot line, but eventually it became something like that.”

When this happens, members will rally and get the person the help they need.

Despite starting the group, Tei also uses it to learn more about her own issues.

Last year, amid work-related problems, she started developing intense anxiety.

She turned to the group for some pointers on what was going on and how she can help manage it.

“I set up a group but ended up going back to the group and asking ‘I know some of you have panic attacks already how is this thing like’?”

In Ghana, if a person seeks treatment for depression, they are likely to be taken to a hospital or a church group.

Another member of the group held a session for those who wanted to learn more about anxiety and shared coping mechanisms.

However, Tei is quick to point out that the group does not try, or seek to treat people, but instead helps them finds ways to get treatment, or deal with issues.

They support each other to go to the hospital to get professional help.

Tei explains that in Ghana, if a person seeks treatment, or someone seeks it on their behalf they are likely to be taken to a hospital, or a church group. Ghana does not have the General Practitioner (GP) system many western countries have.

In cases where someone might be aggressive, Tei notes they might be checked into a psychiatric  hospital, though depending on who is trying to help them, they might end up at a church, under the belief that prayers will fix them.

It was Google that helped her realize her racing head wasn’t malaria, and it was through the internet she brought Purple People together. And with her whole work being about being online, this extends to the little free time she has as well. Tei is involved with the Wikipedia community, where she edits Wikipedia Ghana. She is a co-founder of the Wikipedia Ghana community, and one of its representatives.

A Changing Direction

While she had to search hard to identify what was going on with her 11 years ago, Tei says there is a lot more mental health awareness and advocacy in Ghana now. Those who feel like they are lost in the dark luckily have more avenues to turn to.

Those who feel like they are lost in the dark luckily have more avenues to turn to.

“I have turned on the radio a few times and heard people talking about mental heath, and I have read a few articles here and there of people talking about depression.

“I have sat in meetings where people have come out and said ‘Hey I am depressed, have anxiety or am panicking’,” Tei says.

“I get the impression people are becoming more aware and speaking up.”

 

Profiles

Bipolar, Face-Blind, And Internet Famous

Comedian Michael Noker wants everyone on YouTube to know his face... even if he can't know it himself

Every week, hundreds of viewers tune into Michael Noker on YouTube, ready to laugh at his breezy tales of dating disasters and self-deprecating life advice. On Instagram, Facebook and Twitter, photo feeds punctuated by Michael’s sardonically raised eyebrows have attracted nine thousand or so followers.

As his online presence grows, the twenty-six-year-old is starting to become recognizable… an irony that makes him chuckle, since face blindness means, for this YouTuber, recognition’s a one-way street.

He admits it’s a little odd for someone with face blindness –or prosopagnosia–to use their own image to seek fame and fortune on the internet, but Michael says it’s a way of pushing himself out of his comfort zone.

“I went through a period of my life–basically the first twenty-five years of my life–when I was afraid of everything. I was really anxious and I was terrified of lots of things.”

Last year, he decided to change his life. “YouTube is something that involves a lot of creativity, and it was also one of the scariest things I could think of, because what’s more terrifying than putting your face on the internet?”

“What’s more terrifying than putting your face on the internet?”

Watching Michael’s upbeat, confessional-style videos, where he seems to be almost always on the verge of laughter, there’s no hint at the anxiety and depression that have dogged him throughout his life, beginning with a diagnosis of bipolar disorder at fifteen. But like face blindness, that’s the nature of depression, he points out. It’s not a heart-on-sleeve condition.

“I struggled with a lot of things for a long time, I felt ugly, unwanted, unlovable, I felt like a loser and like I didn’t have anything to offer to the world.”

Michael Noker has face blindness.

Creating videos on YouTube is a way of presenting the person he wants to be to the world. Self-acceptance is a theme that runs through his work, and Michael, who describes himself on one of his videos as “moderately, yet approachably-attractive male”, says his own journey is still a work in progress.

After spending a few years unhappily medicated–“I don’t know anybody who says, ‘hey, I’m on Prozac and I feel great!”–Michael swapped medication for meditation after talking to a roommate about Buddhism.

Depression is not a heart-on-sleeve condition.

He’s quick to point out this route isn’t for everyone. “It was a very foolish decision that worked out very well for me.”

“In meditation you take the idea and observe it, then you just let it go. You don’t assign a label to it or identify it as good or bad then you let it go. It’s the same thing with emotions, if you feel sad you don’t have to feel bad with it.”

Sadness doesn’t have to be a negative feeling that drags you down, he points out. “That was a strange thought but it works for me.”

This meditative technique is a central tenet of cognitive behavioral therapy, and, Michael says, a powerful way to take control of a mind that’s completely out of control.

“As soon as I stopped letting my thoughts run wild, and stopped calling myself ugly or worthless, everything went back to normal and I had this new emotion, happiness. I am a happy person, who knew?”

I am a happy person, who knew?

“To help myself, I look at the really good parts of me you don’t find in everybody. For me that is compassion, empathy. I’m a very good listener, good at supporting people. I’m a great cheerleader, if you’ve got me on the sidelines you’re going to feel special you’re going to feel empowered.”

Dealing with the aftermath of his divorce has played a large part in this journey. Michael met his ex-husband in an online chatroom at the age of sixteen. At nineteen, he got married.

“I’d never dated before, I met him on a chat room online. Being a gay teenager, that’s your option as far as seeing people. It’s been a decade, we’ve made some progress, there are more safe spaces now, but at the time; if you were gay and a teenager and you wanted to meet other gay people you got online.”

Being gay in New Mexico isn’t easy, but the hate is one-sided: Noker tries to love everyone.

While he says neither bipolar disorder nor face blindness had an impact on his relationship–except for a few awkward dinner parties where he failed to recognize his husband’s friends despite several introductions–he admits the decision to stop taking his meds was central to the breakdown of his marriage at the age of twenty-three.

“[My ex husband] was very much against that, he did not want me to do that, for good reasons. It’s a very dangerous, risky choice, it’s taking your life into your own hands, when your hands have proven incapable so far.”

Michael moves from earnestness and flippancy in describing the lessons learned from his break up – which he’s also detailed on YouTube. “It wasn’t a great relationship but I learned things there are things you can gain. It’s not a happy relationship that was ending, even if you don’t recognize it as being bad, so that is one perspective.”

“You also get to watch a whole bunch of romantic comedies, you get to cry, you get to eat grilled cheese sandwiches, and chocolate syrup. Break-ups are great.”

Six months ago, Michael quit his regular job and moved from Albuquerque to El Paso to concentrate on “building an empire” full time. “I’ve been bold and fearless and stupid… very, very stupid, but mostly bold and fearless. I’ve gotten really lucky.”

“I’ve been bold and fearless and stupid… very, very stupid, but mostly bold and fearless. I’ve gotten really lucky.”

As his nascent media empire grows, he’s learning a fair bit about what it means to be a public figure. That includes dealing with less-than-complimentary comments, which he chooses to interpret as constructive criticism.

“When people leave you really horrible comments it can push you in the right direction. Obviously they don’t say ‘hey, this is a really ineffective way to communicate, I would appreciate it if you’d work a little bit to clarify the message’. No. They say ‘go die in a fire, go kill yourself’. I try and find the message behind that and use it to improve.”

Some of the exploits detailed in his videos–like dealing with a creepy neighbor who tried to catfish him (pretending to be someone else online) with fake pictures, or receiving unsolicited cock shots from strangers–sound less than ideal, but Michael turns these into funny vignettes to amuse his audience.

“Most of my comedy comes from dating, because dating is hysterical.”

Towering over most of the population at six-foot-four inches, platinum blonde Michael stands out in a crowd. But he shrugs off the suggestion that being unable to identify others in return can be disconcerting. After all, he’s lived with face blindness his whole life, and developed a number of coping strategies.

“When I have a conversation with someone face to face, I note how they talk, how they stand; I have to pick out something unique about them, like tattoos, or height. So if someone’s tall and blond with tattoos I’ll know who that is, but if you show me a picture, I’ll be like, uhhh, I don’t know.”

Michael can trace his memory of face blindness to a perm that sent him screaming to his room.

Michael posing on a rock in Red Sands.

He was four or five, and his mom had just come home from the salon. “She had a bad perm, straight out of 1986,” he says. But it wasn’t the fashion faux-pas that terrified the young boy–the change in hairstyle meant he no longer knew his mother.

“I just started screaming and ran away from her and wouldn’t come out of my room.”

He laughs as he remembers the incident, but admits face blindness meant childhood was sometimes confusing.

It came as a shock when Michael discovered not everyone uses hairstyles to tell people apart.

Like the time he was eleven, when he became separated from his family at a fairground.

“I was looking for my parents and I saw a guy with a bald head, so I thought it was my stepdad and I tried to talk to him. He was staring at me like, what is this crazy small child talking about? So I was like ‘you’re not my dad’. Then I saw a lady with blonde hair and I’d think, oh, that’s my mom … no, not my mom.”

It came as a shock when the adolescent Michael discovered not everyone uses hairstyles to tell people apart. “There was this moment where I was like, oh, okay, so apparently people recognize each other by faces.”

So what does he see when he looks in the mirror?

“I do recognize myself. But it’s been tricky. I’m naturally brunette, but about a year ago I started to bleach my hair. All of my older pictures have brown hair, so when I look at them I don’t recognize myself. I’m aware it was me, I remember when the photo was taken, but it doesn’t look like me anymore.”

Adolescence is difficult enough without being able to recognize your friends. Add to that coming out as  gay and a diagnosis of bipolar disorder in small-town New Mexico, and you could have a teenage nightmare.

Yes, he admits, he had a rough couple of years. But coming out was one of the easier parts.

It happened in a high school geometry class. “[My classmate] said ‘dude, I have a question. Are you gay?’ And I said, ‘yeah,’ and she was like “cool.” And then everybody knew, and no one cared.”

 

Based on geography, El Paso should be conservative, but is actually laid back and friendly, Michael says. He hasn’t had any problems in his day-to-day life, but he’s aware progress still needs to be made.

“I have a deep appreciation of how much we still have to fight. There are certain people I meet, and as soon I talk to them I know they hate me, and I think, yeah, you don’t like me because I’m gay.”

But the hate is one-sided, he says: there’s too much of it in the world already.

“There is something good in everybody, and I do love everybody and want them to do well. That’s the choice I’ve made, and how I’m choosing to live.”