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President Of The Drowning Girls Club

With her popular series of designs symbolizing issues such as anxiety, depression, and PTSD, tattoo artist Fidjit is helping people like her struggling with their mental health.

On the underside of her chin, tattoo artist Fidjit Lavelle has the words “I don’t scare easy” inked in bold black letters. While most of the tattoos that cover her arms and legs reference things like loved ones, childhood memories and favorite films, her neck piece touches on another major part of her life: the debilitating phobia she’s struggled with since she was 8 years old.

The now 28-year-old artist, who only tattoos in black ink in a process known as blackwork, began her first tattoo apprenticeship at the age of 19, right at the tail end of an awful two-year period where her phobia was so intense she couldn’t leave the house due to intense panic attacks.

“It was very difficult in the very beginning,” she says, “There were a lot of times I would make excuses for not going in, leave suddenly, or just feel terrible the whole day while at work.” After the first year, things began to improve, which she credits in large part to hypnotherapy, and she became used to having to wait out feelings of panic and dealing with them after she left the studio.

Tattoo artist Fidjit Lavelle.

Today she’s based in Southend, England and frequently works in studios in London and abroad, having attracted a large following who often identify with the personal and feminist themes found in her work.

In talking about her own mental health, Fidjit points out that while she has Tourette’s, which is a neurological condition, it comes with a number of comorbid conditions like OCD, OCB and PTSD. She also experiences difficulty in social situations, sensitivity to sensory overload, dissociation and mixed personality problems.

“A lot of my work is based around mental health problems because that’s really quite a big part of my life.”

“A lot of my work is based around mental health problems because that’s really quite a big part of my life,” she says, describing her flash sheets (pre-drawn images that anyone can ask to have tattooed) as a visual diary. “I don’t have any interest in just drawing pieces that have nothing to do with my brain or me personally. I’m lucky in that a lot of my clients are on the same wavelength, so they’ve specifically picked me because something I’ve done has spoken to them in a certain way.”

One popular image that still strikes a chord with many of her clients first appeared three years ago in a flash sheet inspired by the suicides of female authors. Adapted from a painting Fidjit had made based on the death of Virginia Woolf, the drawing shows the top of a woman’s head peeking over stylized waves.

One of Fidjit’s blackwork tattoos, which often symbolize mental health issues.

Since then over 1,000 people have gotten variations of the tattoo, members of what she now calls “The Drowning Girls Club.” She says that while some versions are sarcastic or have light-hearted additions like party hats, many clients get them for reasons related to their mental illness or the struggle of keeping their heads above water. Whether people ask for the original drawing or add personalized details, she loves that the image has resonated with so many and that a community has formed around it. “I think that people really like feeling part of something, part of a united front despite whatever problems that they have,” she says.

Recently she’s found herself working on a new series of custom tattoos based on mental health. Like with the drowning girls series, it began with a flash sheet, but this time with drawings inspired by her own experiences with dissociation, panic attacks and an eating disorder.

“One person got one of the pieces done and I wrote what it was about [on Instagram] and then someone asked me to do a custom piece about dissociative disorder,” she explains. After posting that second tattoo and a brief description online, more and more requests came pouring in from people wanting to have their own conditions turned into tattoos.

“I think that people really like feeling part of something, part of a united front despite whatever problems that they have.”

The tattoos, often framed with radiating lines that almost vibrate around the central figure, give viewers a sense of the full-body sensations that accompany many mental conditions. A tattoo depicting panic attacks, for example, recreates a feeling of claustrophobia as seven detached hands reach at a floating head, the character’s distressed face half in shadows as lines emanate along their profile.

“There’s obviously so many different reasons why people get them, but I think there’s an ownership element,” she muses, talking about how people often place their trust in her when coming up with a design but the process is still a collaboration and conversation about how they personally picture their condition.

Capturing often overwhelming experiences in simple visuals, each piece is a unique window into how a specific person experiences and understands their own mental health. Just as putting a name or diagnosis to a condition can be validating, so can creating a representation of your relationship to it.

There are over a thousand variations in the Drowning Girls Club series.

She says that for many, “It makes them feel more in power of something that’s maybe hindered their life in a certain way, because when it’s invisible and kind of floating about it seems a bit harder to take control of. If you have a visual representation you can look at it and remember that’s what it is. It’s just that. I think sometimes it’s quite a nice reminder that is just one part of you and it’s not something that necessarily that needs to rule you.”

“It’s odd, because it’s just a tattoo, but it really does help,” she adds, reflecting on her own piece. “Sometimes if I feel very overwhelmed, I think about the tattoo for my phobia underneath my chin and it makes me feel like I’m more in control, that I’ve got power over it.”

Having the invisible made visible can other benefits as well. She knows of people who’ve gotten these tattoos partially as a conversation starter, a visual way of announcing and explaining their condition or simply showing that they aren’t ashamed.

“Sometimes if I feel very overwhelmed, I think about the tattoo for my phobia underneath my chin and it makes me feel like I’m more in control.”

Fidjit’s own openness about her experiences on Instagram is one reason for her major following, which she credits to changing trends in the tattooing industry. Whether it’s the movies they love or the social movements they support, she says social media has made it easier for people to seek out artists they identify with. “I think clients are really interested in the person behind the work and their lifestyle more than their actual work sometimes,” she observes.

Her own posts about things like an abusive ex-partner and the experience of having her rapist acquitted, along with participating in fundraisers for rape crisis and domestic violence charities, has helped her attract customers with similar stories who know her studio is a safe space, even if they might not want to specifically talk about their experiences.

Fidjit’s tattoos help people struggling with mental health issues remember that they are not alone.

Fidjit says that the greatest difficulty her conditions present in terms of tattooing are often social interactions, since talking is often a major part of the job but she can find making normal conversation difficult and doesn’t always know how she’s coming across. That doesn’t stop her from offering a sympathetic ear or calling out abuses she sees in the tattooing industry.

“I’m happy to tell anybody who to avoid – I’ve had tattoos on my body from people who are abusive and it’s a horrible feeling because it’s this thing on your body from a horrible person. I hate that feeling, and I hate other people to have that feeling.”

Because while a tattoo might just be an image on skin, the story of how that image got there can mean everything.

Q&As

The Man Trying To Universalize Mental Healthcare

Most people in the developing world have no access to mental healthcare. By training locals to do basic interventions, Dr. Vikram Patel is making a big difference.

Mental illness, stresses Dr. Vikram Patel, an Indian psychiatrist, is by no means a phenomenon of the west. Rather, it is universal, existing across populations. When combining the most common negative mental conditions–depression, anxiety, substance abuse, schizophrenia, dementia and so on–about one and four people in the world have mental disorders, according to the World Health Organization. Yet the vast majority of people will never receive treatment. That “big scandal” is a problem that Patel, who is the Pershing Square Professor of Global Health at Harvard University, has committed his career to helping solve.

In his mission to universalize mental healthcare, Patel, who grew up in Mumbai, has focused on training local practitioners on the ground in the delivery of basic care. These “frontline workers,” while a far cry from advanced physicians, are trained in providing the basic kinds of mental healthcare which most of the world’s population would simply have no other way of receiving.  Much of what such workers do involves diagnosing conditions, such as depression or anxiety, and gauging if patients should seek more advanced care. Improving mental health literacy in communities is also a major effort. “In the same kind of way that you’d want people in a community to know how to recognize or treat a fever, you’d want people to be able to acknowledge when they have symptoms of depression or anxiety,” he says.

Physical health crises such as polio and tuberculosis have been treated successfully using frontline workers. Why not mental health ones?

Patel’s motivation for the project is simple: physical health crises such as polio and tuberculosis have been treated successfully using frontline workers. Why not mental health ones? Patel, though his Goa-based organization Sangath, has deployed the model mostly in India. But he has also worked on mental healthcare projects in several other countries, including the United States, where large proportions of people with mental illness are homeless or imprisoned. While the developed world may be ahead of the third in terms of resources poured into mental healthcare, says Patel, much of it still has a long way to go in reaching an ideal system of care. Even in the richest countries, he says, anywhere from thirty to seventy percent of people with mental health problems do not receive quality care. In more ways than one, Patel has his plates full. We reached out to hear more.

What is global mental health?

In as much as global health is a very broad umbrella, global mental health has the same sorts of complexities. Firstly, it is truly global. In many areas, global health is a euphemism for the health of the world’s poor. But global mental health really affects every country in the world. As a colleague has argued, when it comes to mental health every country is developing.

The second thing is that global mental health is concerned with disparities in the distribution of health states in the population. Mental health problems are disproportionately distributed. People who are socially disadvantaged, for example, have a much greater burden on their mental health problems and consequently those who suffer mental health problems have often got much poorer social outcomes.

How did you get into psychiatry?

I was first interested in brain disorders. But I felt a little disillusioned by neurologists who were primarily concerned with making a diagnosis. Very often there seemed to be nothing more you could do. I noticed in psychiatry that even though it seemed a much fuzzier discipline and very low on the reputation index it was an area where someone could ask questions about the person as a whole rather than just take an interest in the biomedical diagnosis. That attracted me. But it was a very unpopular decision. Every one of my mentors and family members thought it was a very poor choice. I could choose any specialty I’d wanted since I had done very well in my medical exams.

I felt a little disillusioned by neurologists who were primarily concerned with making a diagnosis. Very often there seemed to be nothing more you could do.

What was the state of mental healthcare in India around this time?

It was pretty much the dud subject of medicine in every respect. Probably ninety-five percent of India had no access to psychiatry. I would say zero percent had access to community-based services. But there’s been a sea change in attitudes towards mental health in India since I started. Part of the reasons are a concerted effort from mental health activists who have been arguing that maltreatment of mental health patients constitutes human rights abuse. People with mental health issues have demanded their sickness be treated on par with people with physical illness. Celebrities and other prominent figures who have disclosed their own experience with mental health problems has also made a difference. And in the last decade the demonstration that you could deliver mental healthcare quite effectively even in places without mental health professionals has made people feel that this isn’t just an academic issue.

What are some common mental health myths you encounter across countries?

The big one is that mental illness is not very common in the population. Many consider mental illness the medicalization of social suffering. Depression, for instance, many think is not a medical problem but a state of misery based on circumstances. A second myth is that these conditions are untreatable, except with very expensive long-term therapies. The reality is completely different. The third myth is that we really don’t have any idea about why people get mental illness, that there isn’t a scientific foundation for this field. Some countries, such as in many parts of Africa and Latin America, believe that mental illness is caused by spiritual factors. But I think that is much less common than it used to be. There is a greater acceptance of a more scientific explanation.

Can you talk a bit about your project training mental healthcare workers on the ground?

India, like many other developing countries, has been innovating with the use of community-based health workers of various types. We simply started applying the same model to mental healthcare. The real innovation was to challenge the idea that mental healthcare always required very elaborate expensive long-term care from highly trained professionals.

Even if you have loads of doctors like you do in the U.S. it doesn’t necessarily mean that people are getting the kind of coverage they need.

It is a way not only of addressing the shortages of medical human resources but also as a way to improve coverage. Even if you have loads of doctors like you do in the U.S. it doesn’t necessarily mean that people are getting the kind of coverage they need. Just having more doctors in hospitals doesn’t guarantee coverage of care.

What are some of the major challenges in implementing this model?

Pushback is still coming from the psychiatric profession. Like any healthcare profession, mental healthcare professionals are quite territorial. They’re concerned about people with much less training giving mental healthcare. These fears are misplaced. We are not training psychiatrists but training people to do very specific interventions. As society becomes more professionalized, as the U.S. is, the greatest pushback is coming from the insurance industry and the professional community. Meanwhile, governments, donors, and development agencies are very excited by this stuff. They all realized that mental health problems are a very big cause of ill health but they were always reluctant to touch this area because of their fear it would open a Pandora’s box in terms of cost and intractability.

Again and again we’ve shown this works.

Are there other global healthcare interventions that have inspired your work?

My inspiration has come from within India, from the work of people such as Abhay Bang, who developed the home-based intervention for the management of newborn sepsis and pneumonia. This was pioneering stuff. Thirty years ago they were able to demonstrate that community-based workers could be trained to treat newborn sepsis and pneumonia. It led to dramatic reductions in newborn mortality. In that time there was enormous pushback from the government as well as the pediatric community at this idea. Now it is national policy. A million frontline workers have been trained to deliver this care across India. It’s become a globally accepted model.

What are you working on now?

My agenda now is scaling up, working with governments and also large organizations to scale up these psychological therapies. I’m no longer simply interested in trials but in implementation questions. Again and again we’ve shown this works.

Essays

My Grandmother’s Murder and My Decade Of PTSD

Today, I’m still finding ways to cope, and I probably always will be. This is my reality after living with PTSD for a decade.

Two weeks after the murder, my tenth-grade biology teacher sent me an oversized greeting card in the mail. In different colors and sizes, students I knew—and some I didn’t—had filled it with condolences. I went to a small school in a small town and everyone knew what had happened. Mom’s mug shot had appeared on the local news just hours after she’d been taken to the county jail in handcuffs. WOMAN STABS MOTHER 20 TIMES had floated across a blue banner under her face.

Everyone knew I was there when my grandmother was killed, and there were no condolence cards for that kind of thing. Mr. M. had made his own by folding a large white poster board in two and stuffing it in a giant envelope. There were no instructions on what to write in a card like that either, so most students wrote I’m so sorry or time heals all wounds or she’s in a better place. Some notes were long, some short, some in ink, some in pencil, but they all shared the same sentiment: it will get better someday.

Everyone knew I was there when my grandmother was killed, and there were no condolence cards for that kind of thing.

The day before it happened, I was awkward and shy and ready for summer break to finally start in two weeks. I loved reading mystery novels and writing poems and posting funny surveys in MySpace bulletins. I hoped to become a writer one day, to write book reviews or interview interesting people about the things that mattered to them. I watched and rewatched the recordings of Pulp Fiction and Kill Bill I’d saved on the DVR so I could quote them on my personal blog of poetry and angst. Back then, I didn’t believe in the idea that life could change in an instant. But then it did: one day I was worried about the grade I’d get on my math test and the next I was hiding in my bedroom listening to my grandmother’s murder.

I’m 25 years old now and I have never forgotten the sounds she made when she died. I have never forgotten what her blood looked like when I walked into the room after it was over—how it was nothing like the kind I’d seen in movies, not even the goriest Tarantino scenes. Last month marked a decade since I received that card from Mr. M., and sometimes I wonder if what I really wanted all those little notes to say was it will go away someday.

The summer I’d been waiting for all year turned out to be the hardest time of my life. I was diagnosed with Post Traumatic Stress Disorder, or PTSD, and was told I needed to see a therapist once a week. I was told it was normal to experience night terrors for a while, but for three months, I dreaded falling asleep. I knew that when I did finally sleep, I’d hear the screams again, see the blood again, relive that night again and again and again. All summer, I slept with the lights on and the door locked and a silver flashlight next to my pillow, and I’d wake up at the same time every night with a circle of cold sweat on the back of my shirt.

On the hardest nights, I experienced sleep paralysis… It was like having an endless panic attack while being stuck flat on my back, completely frozen.

On the hardest nights, I experienced sleep paralysis, a condition that makes you feel trapped in the space between sleeping and waking in which your body cannot move at all. It was like having an endless panic attack while being stuck flat on my back, completely frozen. I confused reality with dreams, and I’d often hallucinate, seeing figures on the ceiling above my bed. In the mornings, I would imagine myself two, five, seven, ten years older and wiser and better. Healed. Fixed. Normal. But time went on and the pain was still there.

Eventually, I could sleep with the lights off or go through a whole night without waking up, but there were triggers everywhere. Anything could spark a flashback. I jumped because a baby screamed while I was waiting in line to take my driving test at the DMV or I ran out of a movie theater because there was a pool of blood on the screen. Friends and family and therapists and books said it would go away eventually. Someday I’d be able to watch a horror movie again. Someday my eyes wouldn’t well up when someone jokingly said, “I’m going to kill you!” Someday I’d wake up and my first thought would be about something other than the murder.

Kristi DiLallo was 15 when her grandmother was murdered while she was in the next room. The symptoms of that trauma still persist; they are very real, and very physical.

Now that the tenth anniversary has come and gone, and as I get further away from the event itself, I feel like the opposite is happening: triggers have gotten louder, more constant. I’ve tried so many times to turn the volume down—through talk therapy, journaling, meditation, and even hypnosis. Over the years, there have been quieter weeks and months, but I’ve still never experienced complete silence. Most of the narratives that actually name PTSD are trauma-to-recovery stories in which time really does heal all wounds and survivors are heroes. And maybe that’s true for some people, but lately, even after all these years, I feel more sensitive than ever to the sight of blood or even hearing the word “murder.”

Now that the tenth anniversary has come and gone, and as I get further away from the event itself, I feel like the opposite is happening: triggers have gotten louder, more constant.

In the beginning, my most frequent symptoms were nightmares. For the most part, they didn’t even have to be triggered by anything; I’d simply fall asleep and have a nightmare about the murder because it was so fresh in my mind. These days, I’m having nightmares again—about twice a month or more—and the triggers can be unpredictable. Of course, some are more obvious, like an unexpected violent scene in a movie, but some are hidden in small pockets of my daily life. PTSD is a difficult condition to explain, because it’s the kind of thing people have to see to believe. We live in a time when trauma is either completely misunderstood or used as the punchline of a joke—the word “triggered” itself has literally become a meme. One of the most difficult aspects of living with PTSD is that it really is invisible: nobody sees those nightmares but me.

Six years ago, I binge-watched the original two seasons of Twin Peaks in one weekend in my college dorm room. I loved the show because it was silly but not stupid, spooky but not gory. It was one of the only crime shows I could watch without covering my eyes, and it offered a meaningful, unique portrait of teenagers grappling with the trauma and grief of a murder in a small town. I recognized myself in many of the characters, even the adults, and I admired them because their grief was loud and absurd all the time: Laura’s mother screaming and crying hysterically, her father dancing with the now-iconic photo of his dead daughter, her best friend searching for the truth about the crime. When you lose someone you love, especially when the loss feels like the stuff of horror movies, you want to scream at the top of your lungs and you want to remember what it was like to look at their face instead of a photo and you want to find out why any of this ever had to happen.

PTSD is a difficult condition to explain, because it’s the kind of thing people have to see to believe.

Last year, I was excited about the long-awaited return of the show, but it gave me the worst nightmares I’ve had in years. Eventually, after watching the first six episodes with a pillow in front of my face, I stopped watching it altogether—after a particularly gruesome episode depicting a bloody car accident involving a child, as well as two stabbing deaths. Friends who knew I loved the original show would text me after new episodes, and I would feel too embarrassed to tell them I’d stopped watching it. I worried about making them feel uncomfortable with the reality of my condition: because of a single night when I was fifteen, I just couldn’t watch the same TV show as them. Recently, I started to ask myself, why am I so ashamed of something I cannot control? Surviving a violent crime is difficult for so many reasons, and the grief and guilt manifest differently almost every single day. Some days I wake up wanting to tell everyone I meet what has happened to me; other days, I want to change my name and move somewhere new and never tell anyone ever again.

Maybe my shame comes from the expectations that other (well-meaning) people have about my trauma. When I do tell people about the murder, the usual response is, “I never would have guessed” or “You look so normal.” There have also been times when I’ve told someone and it made them so uncomfortable that they changed the subject or laughed because they thought I was joking. Even though I often feel completely consumed by the murder on the inside, there will always be people who want me to either perform my pain—in ways that they can recognize from shows and movies about tragedy—or pretend it never happened at all.

“Today, I’m still finding ways to cope, and I probably always will be. This is my reality after living with PTSD for a decade.”

When I think of Mr. M’s condolence card, which I continue to be grateful for, I think of how much other people’s perceptions of my trauma affected my own understanding of it. All these years later, the time heals all wounds narrative just doesn’t make space for wounds like mine—the kind that still sting. Most of those standard clichéd condolences suggest that you won’t be in pain forever, and as a fifteen-year-old girl in the thick of my grief, I saw that as a promise and I clung to it. So what was I supposed to do when the pain didn’t go away? Pretend it wasn’t there and be ashamed that it was.

In the last ten years, I’ve hidden my PTSD from many people in my life—family, boyfriends, close friends—to the point that I hurt myself by not bringing it up. Once, I watched a Scream marathon with a group of friends because I was too embarrassed to say why I didn’t want to. This, of course, resulted in a flood of flashbacks and nightmares I dealt with on my own. In a college sociology course on family relationships, I ran out of the classroom when the professor played a 911 call of a child screaming, “Something bad is happening in my house,” because it reminded me of the night I had to make that call. Again, I felt embarrassed and hysterical and childish, but later, when I told the professor about my situation during office hours, she responded with care and concern. Her only question was, “Why didn’t you tell me sooner?”

I’ve learned that the only way I can expect others to try to understand my PTSD is to acknowledge it myself—and to cut myself some slack.

Since then, I’ve learned that the only way I can expect others to try to understand my PTSD is to acknowledge it myself—and to cut myself some slack. Last summer, after I stopped watching Twin Peaks, I made myself a promise: I challenged myself not to watch any shows or movies depicting murders, especially stabbing murders, for one month. My Netflix queue got a lot shorter, and the challenge definitely wasn’t something I planned on announcing to the world, but almost immediately, I could feel my mental health improve. I slept better. I didn’t wake up crying. I spent more time reading and writing and exercising. There were still other triggers around me, but I learned that setting my own boundaries gave me a feeling of control over a condition that has rendered me powerless so many times.

Today, I’m still finding ways to cope, and I probably always will be. This is my reality after living with PTSD for a decade: I Google movie and TV spoilers so I’ll know if I have to cover my eyes before a particular scene or if I should avoid watching it completely. I cry a lot, sometimes about the smallest things, and when I start, I don’t know how to stop. I get flashbacks on the subway or while I’m teaching a class or while I’m reading a book at home. And all of that is okay. I can allow myself to say no to a slasher movie and I can leave a room if I don’t feel comfortable and I can allow myself to enjoy the beautiful parts of my life, too. I don’t have to feel like a hero when I talk about PTSD, but I don’t have to feel weak or worthless or ashamed either. I know that although this will never completely go away, it does get better. Mine is not a story of trauma-to-recovery, but it is a story of trauma-to-hope, and I’m still learning how to tell it.

Creative Commons photo by Mark Strozier.

Q&As

The Disappearing Man

Anorexia doesn't happen only to women. Men need support for eating disorders too. Ask Ken Capobianco, who denied himself food for 28 years.

When you hear the term anorexia, you’re likely to picture bone-thin women and waif-like young girls. But a surprising number of men also struggle with this debilitating behavior. According to the National Eating Disorders Association, one out of every four individuals diagnosed with anorexia is male.

Ken Capobianco knows first-hand about living in the shadows with this problem. An award-winning journalist, the 58-year-old battled anorexia for most of his adult life. While covering the music and arts scene in Boston, his daily consumption of calories often consisted of Diet Coke and a handful of cookies. This self-destructive pattern nearly killed him and led to a long series of hospitalizations and interventions.

Today, his anorexia is under control. He is happily married and lives steps away from the ocean in California. He has just published a novel drawn from his experiences, Call Me Anorexic: The Ballad of a Thin Man. We spoke with him to discover the true story behind the fictionalized tale.

When were you first diagnosed and what was the diagnosis?

I had wanted to lose weight my entire life. I started running around 18. The pounds just kept coming off and I found it very difficult to stop. By 21, I had moved to Boston to get my master’s at Tufts University. After I graduated, I went to the doctor and she said, “Ken, you’re anorexic.” I said I don’t think so. I was in complete denial.

The cover of Call Me Anorexic: The Ballad of a Thin Man.

Do you know what triggered the desire to keep getting skinnier?

I was never fat, [but] I was never comfortable in my skin. I always wanted to be lean, like either a rock star or a runner, and I wasn’t. At that time, I was running eight to 10 miles a day. It became an addiction. Every girl I met during this time kept telling me to stop, but I said no.

It’s funny that girls were telling you to stop. They’re usually more weight conscious than guys. But it had to take a toll, right?

Yeah. I’ll give you an example. I was 20 or 21 and went to a late-night movie. I hadn’t eaten all day. All of a sudden, I started shaking uncontrollably. My body was giving out. I got taken to the hospital and the guy said: you’ve got to eat something. The doctors were telling me and my body was telling me. For the first time, I got this shock of recognition that something was wrong.

You once said that there was nobility and beauty in being thin. Where did that idea come from?

I felt as if there was something not only pure in losing weight but powerful. Everybody else was weak. They were eating pizza and hamburgers and I didn’t need to. That may derive from the fact that I’d gotten my master’s degree at a very young age and I was doing nothing. I was working in a bookstore during the early Reagan Recession. Parts of my life that I thought I’d be succeeding at, I wasn’t. I derived a sense of power and strength that I was not eating and the rest of the world was. It’s an odd distortion because you’re getting weaker, but I felt I was getting stronger.

“I derived a sense of power and strength that I was not eating and the rest of the world was. It’s an odd distortion because you’re getting weaker, but I felt I was getting stronger.”

You were in and out of hospitals. Doctors were warning you to take it seriously, but you didn’t. What happened?

When I was 35, about 15 years into my anorexia, I got double pneumonia. It was such a bad case that the doctors told my brother I wasn’t going to live. I spent three months in the hospital. They not only had to treat the pneumonia, but they also tried to get me to eat more. I got into therapy with a psychiatrist. Once I got out, everybody said: you’ve got to change your ways. And, of course, I changed my ways for about two or three months and then lost weight again. I had to go back to the psychiatrist once a month and the physician once a week.

What was a typical day like, if there was such a thing?

I stopped running at 36 or 37. I was either a freelance writer or a teacher or working at the Boston TAB. I would drink Diet Coke all day. I was a critic, so I would go to movies or to a club. I was wired on caffeine. I’d go home around 1:30 and eat, say, a blueberry muffin or some Oreos. Seriously—that would be my complete intake all day. I did not eat anything during the day for over 28 years. Nothing.

Didn’t you get hungry?

Never. When you train your body not to eat, you’re shutting your appetite down. You’re shutting down your food appetite, your sexual appetite. You’re also shutting all your emotions down. I just felt numb.

“When you train your body not to eat, you’re shutting your appetites down: food, sex, emotion. I just felt numb.”

The arts were a central part of your life. When you listened to a favorite album or saw a favorite movie, didn’t that make your emotions jump?

Yes! Exactly! And you’re tapping into how I survived. Because the music thrilled me and brought joy into my life. But I also became over sensitive. I would cry at a lot of movies and hide in the back of the theater because all the emotions would come out. When I did feel something, I felt it profoundly because everything had been bottled up.

Although he is a healthy weight today, Ken Capobianco struggled with anorexia for decades, at one point weighing only 69 pounds.

It’s hard to believe, but your weight dropped to 69 pounds. How?

In my 40s, my mom was dying of cancer. I left Boston to help her. I was in my old house [with] all the demons—I saw little fat Ken—and I stopped eating. One night I pulled into a Burger King oddly enough to get something for her and I had a stroke. They took me to the hospital. I couldn’t feel anything on the left side of my body. They weighed me and said, “Do you realize you weigh 69 pounds?” I got to tell you: that was beyond devastating. My life was unraveling. I didn’t know what I was doing. It seems unfathomable that a human being—let alone a man—could be that thin, but I was.

What effect did the stroke have?

I was in the hospital for two or three months. I had to relearn how to walk, how to use my left hand. I’m lucky to be alive because it didn’t affect my brain function. It didn’t affect my thinking, but I can’t run. There’s still some kind of nerve damage. It’s been 13 years and I’m functional, but I still know there are things I can’t do.

What was the turning point in your life?

I moved to California to start over. It’s not that easy. You don’t just flip a switch. But once I came out here, I said I’m going to try to meet women and people. I moved to an apartment complex by the water where everybody’s out. I decided to spend time with them. I had spent my entire life either alone or in clubs. But out here, there are all these people and I’m making these human connections.

After going out to eat with women, you’d still berate yourself. How did you handle that?

A lot of the stuff I learned in therapy was: try to calm down and recognize the things bringing you down and try to make an accommodation and see how you feel afterwards. I’d say: okay, you’re not going to die because you have food in you. After 29 years, I was so tired of saying no, I’ve got to deny. The extraordinary length of the denial and the anorexia allowed me to say it’s time to let that person go. That’s really what happened. I decided I’ll make it through the day feeling uncomfortable with food in me and see how I feel tomorrow, and I felt okay. Ultimately, I met my wife and things like that and things improved.

“After 29 years, I was so tired of saying no, I’ve got to deny… I decided I’ll make it through the day feeling uncomfortable with food in me and see how I feel tomorrow, and I felt okay.”

Do you struggle with anorexia today?

I do eat every day basically like a normal person, but there are limitations. I won’t eat an eight-course meal. I’ll eat what I want and that’s it. I can’t escape mirrors. Not only do I look to see if I’m gaining weight, which is less now, but also if I look thinner. The one thing I don’t want to be is gaunt. That’s the healthy change.

What was the emotional experience for you of writing the book?

Hard. There was one time I started feeling chest pains and fatigue. I left and sat in my car and listened to music and came back. I put off doing this for so long because I was afraid to dig into and feel those things again.

What do you say to men who may be in denial about their anorexia?

Get into therapy immediately because you cannot do it by yourself. If it gets away from you, it will get worse and you’ll fall into a black hole you can’t get out of. The nature of the disorder is privacy and secrecy. Just allow yourself to say I’m ill. I need help. That’s the key thing. As with anything, to recognize you have a problem and go out and get somebody who’s going to help you get over it.

Q&As

The Battle After The Fire

PTSD, depression, and other mental health disorders are a hidden epidemic amongst firefighters and other emergency response workers. That's an epidemic Jeff Dill wants to drag into the light.

It is a grim but telling statistic that, in America, firefighters are more likely to die by their own hand than their job. Though little talked about, firefighters and EMS personnel, the people whom society counts on to handle its crises, are among the highest at-risk groups for severe depression, a kind of personal crisis. Their rates of suicide are ten times the national average. Last year, 92 firefighters and 17 EMS workers took their own lives, compared to 93 who died in the line of duty. Despite this, less than 2% of fire and EMS stations have a truly defined behavioral health program. The job is demanding,  physically as well as emotionally and encountering death or violent injury is commonplace. Years of such work can take its toll on the psyche. But it is more than mere exposure. It is also a culture of machismo and expectations of superhuman endurance that has kept the mental health crisis among firefighters and EMS workers silently burning.

Jeff Dill of theFirefighter Behavioral Heaalth Alliance.

That’s what Jeff Dill wants to change. The former firefighter captain and licensed therapist is the founder of Firefighter Behavioral Health Alliance (FBHA), a non-profit which educates firefighters and EMS personnel on behavioral health issues. Workshops, which he gives to stations across the country, touch on topics that have long been taboo in the community: depression, PTSD, anxiety, addictions; human weakness. He shows them how to notice the warning signs, in themselves and others. Above all, he stresses the importance of asking for help. Along with such training, Dill’s group also offers support and other resources to the families of suicide victims, much of the money which comes from his workshops (in the past couple of years, they have been able to provide four educational scholarships for children of suicide victims).

A major aspect of the group’s work involves collecting data on firefighter and EMS suicides. They are currently the only organization which does so (the earliest case they’ve validated involved a fire chief in New York in 1880). Data isn’t easy to come by, and largely comes through a confidential online reporting system. A decade later, the database stands as a grim motivator for Dill. In his research, he estimates that he has spoken to over 1,100 fire and EMS workers about their general mental health, as well as 500 directly struggling with PTSD or thoughts of suicide. The knowledge collected in those interviews has shaped the seven workshops which he offers to stations.

 

A culture of machismo and expectations of superhuman endurance that has kept the mental health crisis among firefighters and EMS workers silently burning.

Lately, he says, demand is high. Stations typically come to him requesting training. This is a major change from the beginning, says Dill, when trying to get folks to talk about these issues was a challenge. Of his first-ever workshop, in Philadelphia, Dill recalls, “You’d have thought I had leprosy.” Now the group is expanding, hosting workshops abroad, bringing on new volunteers and even planning a cross-country tour in a camper. “Finally, people are talking about it and we’re seeing a lot more proactive action,” Dill says. “But we still have a long way to go.” We reached out to hear more.

How did you get started in all this?

I spent 26 years in the fire service in the northwest suburbs of Chicago. I retired as a fire captain. In 2007, when I was a battalion chief, I went back to school and got my masters, becoming a licensed counselor. Because of Hurricane Katrina, I wanted to work with fire and EMS personnel. Division One out of Chicago sent down numerous firefighters including ones from our department. When they came back they said, ‘We saw some horrific things Jeff. We were picking up bodies in the streets.’ They went to see their Employee Assistance Program. But E.A.P., though good people, didn’t have any clue as to what our culture is in the fire service. That’s when I decided to get my masters. In 2009, I founded Counseling Services for Firefighters to train counselors and chaplains. If you want to work with us you need to understand us. When I started receiving phone calls and emails from around the world asking if I knew anything about firefighter suicides, I said, ‘I didn’t know we had a problem’. I called all the major players in the fire service and no one kept any data. In 2011 I founded FBHA, and we are the only organization in the US that tracks and validates firefighter and EMS suicides.

When I started receiving phone calls and emails from around the world asking if I knew anything about firefighter suicides, I said, ‘I didn’t know we had a problem’.

Why is this such a prevalent issue?

We have validated 1,060 fire and EMS suicides. I travel about 130,000 air miles every year across US and Canada. I’ve spoken to well over 15,000 firefighters. With those suicides which we have validated, the number one known reason was marital and family relationships. That’s followed by depression, then medical conditions. Number four was addictions and five was diagnosed with PTSD. Are these all interactive? Absolutely.

Why are family relationships number one? Is it difficult for firefighters to sustain relationships?

It’s difficult in that we don’t tell people what we see and do. That burden is in your mind. It starts changing you. Any firefighter that says they haven’t changed because of the job is not telling you the whole truth. Because it does change you. How can it not? It is not only the things that we see and do but all that’s expected out of us, from the community, our brothers and sisters, and even history dictates how we’re supposed to act. You live it 24/7, so all the sudden, now you’re isolating at home, you bring a lot of anger home, you’re not as communicative as you should be. All of these are very detrimental to relationships.

You’ve talked before about “cultural brainwashing.” What is that?

Any firefighter that says they haven’t changed because of the job is not telling you the whole truth.

I don’t use it as a bad term. It’s just that we have always been taught to handle all of our issues on our own. ‘Don’t bother anyone else and don’t be the weak link of the company.’ When you’re battling issues, personally or professionally, and you’re not supposed to turn to anyone and handle them yourself, well, the easiest thing to do is go down to the liquor store and pick up a six-pack. Maybe you’re having night terrors and not sleeping well. Before you know it, you’re hooked. It doesn’t make us bad people. We were always just told to handle things on your own.

How dangerous is the job?

In reality, the traumatic calls are very minimal compared to the average calls: the car accidents where there’s really not a serious injury and the medical calls. In most departments, 70% are medical runs. When you start talking about tragic calls, it also depends upon the volume of calls. In some cities they run a lot of calls and they see a lot of things. But each place is different. Maybe one station has expressways going through their district and they’re seeing a lot of serious crashes. It really depends.

Looking back on your own career, what were some personal difficulties you encountered?

In 2011, my granddaughter, at 22 months, lost her right eye to cancer. I was in fire service at this time. It was a struggle and I didn’t realize it. I began to isolate. It’s amazing how it affects you and you don’t even realize it. My crew knew what had happened but I didn’t tell them how much it affected me. We had a video of her playing in the nursing station before the surgery. I would go home on my off days and watch that video on my computer, sitting in tears every night. Looking back I can’t believe, that wow, why didn’t I reach out for help? I was a battalion chief, so you’re supposed to have your men and women look up to you. Now I think it would have been a lot easier if I had just said, ‘Hey man, I’m struggling with this.’ If I am, and I’m in this business, then guess what, someone else might be too.

It’s amazing how [depression] affects you and you don’t even realize it. Looking back I can’t believe, that wow, why didn’t I reach out for help?

What are some tips for dealing with stuff?

We have our top five warning signs. Recklessness and impulsiveness. Anger’s a big one–you’ll see a lot of fire and EMS struggle with anger. Isolation is one as well. Loss of confidence in their skills and abilities, because their head’s just not in the game. And of course the last one is sleep deprivation. That’s a real huge one. The schedule, even for volunteers, is rough. You’re woken up in the middle of the night. One warning sign we’re really seeing grow among retirees is that they’ve lost their sense of humor. Humor for us in the fire service is our coping mechanism. For those retirees, that’s a big one. We tell families to watch out for that.

Have you found any regional differences in your work?

Our whole job is predicated on helping those who call for help, so where did it go wrong so that we can’t ask for help?

Absolutely. Ninety percent of our workshops are from Pennsylvania south and to the west. The northeast is a very difficult nut to crack. They’re very tight. The history of the fire service is deep. I have some great friends in New York and Boston who talk about their great-great-great-grandfather being a firefighter, their uncle, brother, etc. It’s an eye opener but we’re starting to see some movement up there as well. Because I have data on some our brothers and sisters who have taken their lives there. Other states are more open to changes. And they are making them.

What kinds of reactions have you received?

Early on no one wanted to hear about what we did. When you start talking about that people start looking at themselves; they don’t want to admit that maybe they’ve been struggling. That’s always perplexed me, though, because our whole job is predicated on helping those who call for help, so where did it go wrong so that we can’t ask for help? But it’s changing. We now have bookings through 2019 for our workshops. So you see, it’s changing.

Q&As

This ‘Bipolar Babe’ Stomps Out Stigma With Storytelling

The deaths of Anthony Bourdain and Kate Spade prove that anyone can be isolated by the stigma around depression, says Andrea Paquette of the Stigma-Free Society.

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A bright pink t-shirt with the words “Bipolar Babe” on the front has led to a movement to stomp out stigmas that allow negative attitudes and perceptions of people with differences to persist.

Andrea Paquette, 41, of Vancouver, British Columbia, Canada made the t-shirt nearly a decade ago to overcome feelings of shame related to her diagnosis of bipolar disorder. The move was part of an empowerment strategy she devised after recovering from a suicide attempt. More than helping herself, the t-shirt became the impetus to start the Stigma-Free Society, a not-for-profit charitable organization (the equivalent of a 501(c)(3) organization in the United States) dedicated to spreading acceptance, understanding and empathy and stomping out the stigmas related to mental illness, physical and developmental disabilities, race, sexual orientation, gender identity and expression, and religion.

Andrea’s mission has taken off. Since launching the charity with the help of dedicated partners, she has told her story to more than 18,000 youth in high schools in British Columbia. She contributed a chapter to the book Hidden Lives: Coming Out on Mental Illness (2012), and is working on a book about people who have overcome immense challenges to live extraordinary lives.

Folks caught up with Andrea to find out why her story is so powerful and share her stigma-stomping message with our readers.

Andrea Paquette, founder of the Stigma-Free Society.

Why are personal stories a good way to stomp out stigma about mental health?

My passion was to share my story so others don’t have to suffer in silence like I did. People connect with personal stories; it’s what moves them in their hearts. Hearing about a person facing extraordinary things helps others relate to the issue. It makes us feel more human to be with another human being who has suffered or is dealing with some kind of challenge.

People connect with personal stories; it’s what moves them in their hearts.

Tell us about the first time you told your story?

I was asked to speak in front of 500 people. I was scared and shaking and red-faced, and I looked around at all these people, and I said, “Hi everybody, my name is Andrea, and I have bipolar disorder, but I’m not bipolar disorder. I’ve learned I have a mental illness, but I am not defined by that illness, and I can live an amazing life.” I knew in that moment the stigma had shattered. It was time to come out, I guess you can say, and just be okay with having bipolar disorder.

How did you react to your diagnosis?

I had a major psychotic episode when I was 25, which led to my hospitalization. I got diagnosed quickly, and I’ve been asked if that was a relief, but, to be honest, it really devastated me.

Growing up, I had a mother who had bipolar disorder, but it was always swept under the rug, and it was never discussed as a family. Mom would just disappear for weeks on end, and we were never given an explanation other than “she has nerves.” You would think I’d be aware or look for signs of mental illness in myself, but I never did. The diagnosis was quite a shock.

Describe some of the challenges you faced after your first episode.

I hit my deepest, darkest depression of my entire life. I couldn’t grocery shop for myself because it felt too overwhelming to even step into the store. Even cooking something easy felt like building a house. I couldn’t even shower; it felt like climbing Mount Everest. It was horrible.

I’m very candid about what happened. I medicated myself with sleep for two weeks, day and night, because I didn’t want to see the sun. And then I attempted suicide, which landed me in the intensive care unit for three days. I luckily survived.

What I always say following up with that, because it can be traumatic to hear about my attempt, I say we need to talk about suicide because we don’t talk about it enough. It’s quite taboo still in this society. I didn’t reach out for help; I didn’t talk to my family; I didn’t reach out to my friends, my doctor, any community resources. I wasn’t alone but I felt very alone. We need to remember there is always help and there is always hope.

We need to remember there is always help and there is always hope.

What’s in your tool kit to help you through a bad day?

Near the beginning, I thought that that dark place was where I was going to be for the rest of my life. But the truth is, it passes. We’re not always going to be in this really bad, dark place.

Nowadays, I know I have access to my psychiatrist, who is a partner in my mental health journey. I’ve sought out counseling — cognitive behavioral therapy and dialectical behavior therapy, which is about mindfulness and learning those types of strategies. I also have an app called Simple Habit. It helps me go to sleep with five, ten, twenty minute guided meditations.

If I feel really off, I can take an extra dose of my medication, doctor directed. Self-care is huge. It’s not just about bubble baths, but it does include bubble baths, too. Surrounding myself with positive people. If I’m not feeling well enough to go out, I’ll get on the phone and talk to my best friend for hours. I’m lucky I have people in my life who are there to support me and love me no matter what.

And my work. What’s kept me going is to make a difference in the lives of other people and to let people know that there is always hope.

Paquette speaking at a school assembly about mental illness and suicide prevention.

What are some things people misunderstand about mental illness?

When you’re in a mental health crisis, people often have this stereotype that you’re scary, violent or dangerous, the scary guy in an asylum in a straight jacket. For myself, I was more kind and empathetic and loving than I’d ever been in my entire life. That’s how it showed up for me. One of the stories I always tell in presentations is the day I saw a man with no legs in a wheelchair. I felt so much empathy, I was crying. I gave him my gold diamond ring that was given to me by my deceased grandmother. I said you need this more than me.

What do you want people to remember when they’re having a dark day?

Peer support is one of the best avenues when you’re having a dark day. With mental health, it’s about connection. People are feeling disconnected, they need to create some connections. A medical model is great; seeing a doctor is needed. But you need community. You need people who understand you. Support groups, especially for youth, who often feel like they’re the only ones dealing with a mental health issue, will get people that social interaction.

When you’re in a mental health crisis, people often have this stereotype that you’re scary… For myself, I was more kind and empathetic and loving than I’d ever been in my entire life.

What has surprised you about your mental illness?

When I woke up from my attempt, I was devastated to be alive. My psychiatrist is the one who brought the sunshine back in my life. He made me realize mental health is manageable. I didn’t think it was; I thought my life was over; I thought who I had been was gone. I ended up becoming a better person for it. My biggest curse became my biggest gift.

I look at my life now, and I’m very happy. I have a very blessed life, pets and family, people who love me, job and opportunities, travel. I never thought having a mental illness I’d be able to have all this. People often think that when you have a mental illness you’re stuck at home cause you’re a lost cause, but you can lead a very, very full life. I never let bi-polar disorder stop me.

Some people take the point of view that we shouldn’t speak openly about suicide because drawing attention to it can cause others to follow suit. What do you think?

I am an advocate for presenting about suicide in an appropriate way. I never think we should be sugar coating our conversations to make people feel comfortable. It’s an uncomfortable topic, and it needs to be talked about.

The suicides of Kate Spade and Anthony Bourdain made international headlines. What kinds of conversations took place around their deaths?

When celebrities like Kate Spade and Anthony Bourdain commit suicide and are revealed to have mental illnesses, it’s a real testament that anybody can be affected by hardship, by losing hope in life. It’s just really sad. Their deaths are a horrible tragedy, but I’m just grateful these incidents are opening up an even deeper conversation. Celebrities are talking about mental illness and suicide on stage; the media is talking about it. I pray we can learn something from their loss.

When celebrities like Kate Spade and Anthony Bourdain commit suicide, it’s a real testament that anybody can be affected by hardship, by losing hope in life…

Do you discover more about your story, gain more insight into yourself, the more times you tell it?

I feel like every time I tell my story I get a little piece of my heart back. It’s always healing. During this interview, I’ve had tears in my eyes talking about my story. There’s always room for further insight, healing, discussion. I just pray that telling my story brings benefit to people. Maybe someone out there will hear the message that there’s hope and there’s help.

Any parting words for our Folks readers?

I close all my presentations with these words: No matter what our challenges, we can all live extraordinary lives. We can go through challenges; we can go through hardships; we can go through hell. But you know what? We can make it extraordinary.

Essays

My Body, The Stranger

When you have borderline personality disorder, recovery can often be like learning to love a voodoo doll.

I was born an eight-pound, 15-ounce idea. Once the umbilical cord was cut, a nurse placed me under a warmer so a team could figure out how to fix me. There had been no precedent for this before: a baby born without a body.

My first hours of life passed there, in the warm glow of science. When the doctors approached my parents with a solution, they blinked slowly. Touched their arms. Looked at each other as if to ask whether this was an acid dream. The doctors repeated their proposal: they would sew me to the back of a voodoo doll.

“She’ll adapt,” they assured my weary parents. “In time, she’ll connect with it.”

But I never did.

Still Life, From The Back Of A Voodoo Doll

In reality, my birth was nothing mythical. I was born with a broken collarbone in the maternity ward of St. Luke’s Hospital in New Bedford, Massachusetts. The delivery went as expected, and my body is a very real thing, as hard of a time as I may have connecting with it.

Back in the summer of 2017, I learned the reason for this. I was diagnosed with quiet borderline personality disorder, which means that, unlike outward-acting borderline personality disorder, I lash inward. This diagnosis explains my propensity for self-harm (including my anorexia, and my cutting)  my erratic pattern of relationships, my inability to regulate emotion, my fear of abandonment, my black-and-white thinking, my lack of identity, and the pain I’ve caused to the people around me, including my husband.

It also explains my lifelong pattern of dissociation. My borderline personality disorder is the reason it feels like I spend my days in a clouded cell, hanging between dreams and reality. It is the reason my body is a stranger to me; this heavy, cumbersome thing to which my consciousness has been sewn. It’s the reason we are two people, in a way.

It just doesn’t feel like my body is my own. I don’t understand it.

For me, this persistent disconnection with my body has made it difficult for me to understand myself as a whole. Sometimes, this means I don’t entirely recognize myself in the mirror. I can objectively see what everyone else sees (at least, I think), but I can’t truly internalize the fact that my reflection is my own. That makes doing even little things other people take for granted, like creating a Bitmoji, are basically impossible: I simply can’t objectively tell you what I look like.

It just doesn’t feel like my body is my own. I don’t understand it.  It’s like living with an acquaintance whose sole purpose is to grudgingly perform actions I dictate. This works only part of the time. I pull a string, the left arm raises. I push a lever, the mouth opens. I ask it to be beautiful, it remains the same.

When I say I was sewn to a voodoo doll, what I mean is that there is deadweight, and an emptiness in relation to my own sense of bodily identity that wears me down. I strive to inhabit this bodily other, and I cannot. So I destroy the body I feel so alienated from, little by little, in an effort to stay grounded.

The Woman In The Mirror

Today, when I look at myself in a mirror, it doesn’t matter what other people tell me I look like. Even when my husband tells me–truthfully, I think–that I look athletic, strong, healthier, I see fat. I see failure. I see a body that is not, and never could be, mine.

Even when my husband tells me–truthfully, I think–that I look athletic, strong, healthier, I see fat. I see failure. I see a body that is not, and never could be, mine.

Multiple times a day, I ask my husband if he thinks I am beautiful. If he thinks I am thin. If he thinks I am a good partner; the woman he thought he was marrying. He tells me yes, like he always does. I feel defeated anyway. I cry. I am 30 years old, I think, and I have not met myself.

But I want to. For his sake, and for mine.

My psychiatrist has prescribed Lamictal. The goal is to soothe my interactions with this strange body to which I am eternally married. It will help decrease my urges to self-harm. Combined with the Dialectical Behavioral Therapy I am undergoing, I should learn to manage the symptoms of borderline personality disorder, which could, in turn, help me recover from anorexia.

The road is long, and I am not always so hopeful.  But I am dreaming of the family my husband and I wish to build. I feel somehow certain we’ll have daughters. I hope to hand down my husband’s eyes, a blue the shade of the Mediterranean. I hope to hand down my curly hair, the product of my Lebanese grandmother. But I will not hand down my disorders–at least not by example.

There is nothing mythical about recovery. It is fraught with ugliness, difficulty, and failure.

So I follow the road. And I try to remind myself that, just like there was nothing mythical about my birth, there is nothing mythical about recovery. It is fraught with ugliness, difficulty, and failure. But if I am ever going to get better–to do right to my husband, my future children, and myself–it’s important to remember I am dealing with illness, and not intangibility.

It might feel sometimes like I was born bodiless, and sewn by mad scientists to a voodoo doll. But at the end of the day, recovery can only come through the acknowledgment that I am flesh and blood like everyone else… and that what I am going through isn’t magical realism, but something distinctly human.

Creative Commons image by Timothy Tolle

Essays

Depression Doesn’t Happen After Pregnancy Only

I wanted to have a big family, but my struggle with antepartum depression ultimately led to me reconsider how many children I wanted to have.

For the first time in months, I summoned the strength to go food shopping. As I waddled from the parking lot through the sliding supermarket doors, I felt as if I had anvils on my shoulder and cement soles on my sandals. I grabbed a shopping cart and glanced at the shopping list I’d brought with me. We needed all the basics for breakfast, lunch and dinner, yet I couldn’t care less about feeding my family. All I wanted to do was drive home, draw the shades in my bedroom and crawl into bed. I was pregnant and I was depressed.

Most women are familiar with the concept–if not the experience–of postpartum depression or baby blues, since it affects 85 percent of females who’ve given birth. Most men have probably heard of it as well. However, few people are aware of a related syndrome called antepartum or prenatal depression–also known as depression during pregnancy–which is a very real disorder. According to a University of Michigan study, only one-third of pregnant women with depression receive treatment. That’s because antepartum depression is severely under-reported–and therefore unrecognized and untreated.

Why? Antepartum depression’s symptoms (exhaustion and mood swings, for example) mimic those of pregnancy.

Leah Ingram, her husband, and daughters, circa 2002.

Though my first pregnancy was uneventful, during the second trimester of my second pregnancy, I felt like a dark cloud had descended over me. No matter what I did or how much my husband, Bill, tried to cheer me up, I couldn’t make this cloud go away.

Antepartum depression’s symptoms (exhaustion and mood swings, for example) mimic those of pregnancy.

In a matter of days, I went from “chatty Cathy” to a veritable mute. I was too tired to get out of bed or get dressed yet I couldn’t sleep at night. I didn’t want to eat either. I pretty much “checked out” as a wife and mother for nearly four months. I didn’t clean or cook nor did I care. Bill became my then one-year-old daughter Jane’s primary caretaker, and had she not already been in a daycare situation while my husband was working (and so was I, ostensibly, from home), I don’t know who would have looked after her. I surely was in no shape to do so.

I was lucky, though. My antepartum depression didn’t go unrecognized or untreated. When I talked about my everlasting ennui to the certified nurse midwife who was my primary care practitioner during my pregnancy, she didn’t just brush me off as hysterical. She suspected that something was amiss and referred me to a clinical social worker, who immediately diagnosed me with antepartum depression.

Because I hadn’t previously been treated with medication for depression–heck, I’d never actually been diagnosed–starting me on antidepressants was off the table. However, that’s not always true for women who have already been diagnosed. According to the Centers for Disease Control, nearly half of all women taking antidepressant medication continue to take them throughout their pregnancy. The Mayo Clinic says that taking these medicines during pregnancy do come with some risk to the baby, but not taking them bring risks for the mother, especially if she has severe depression or a bipolar disorder that requires constant treatment.

For me talk therapy would have to do. During my weekly sessions I talked with my clinical social worker and learned to be patient with my prognosis–and ask that my family be the same. We had to weather and wait out the storm.

Thankfully, a few weeks before my due date, my outlook began to improve. I started getting out of my pajamas before noon, I managed a few trips to the supermarket, and my appetite returned. By the time my daughter Annie was born–full term, nearly eight pounds and completely healthy–I was almost all the way back to my old self.

When Bill and I got married, we wanted to have a big family–four children, maybe more. That never happened, because I never wanted to risk becoming that depressed again.

This may sound like a fairy tale ending to my story, but it’s not. When Bill and I got married, we wanted to have a big family–four children, maybe more. That never happened, because I never wanted to risk becoming that depressed again.

When Annie was in elementary and middle school, she often asked why she couldn’t be a big sister. Even getting her a dog didn’t ebb the flow of those big sister questions. So our go-to response had to do with affording college and how that’s easier with two kids only. But the truth is way darker.

Leah and Annie today.

Annie turns 21 later this month, and I still mourn the children I never had after Annie. Sometimes I’ll stop and wonder what life would have been like with four children, each spaced two years apart. That was the original plan. However, we had to alter that plan after Annie’s birth. Neither one of us wanted the risk of me having antepartum depression again.

I think that was the right choice. Still, I’m sad that Annie never got to be someone’s big sister.

Creative Commons photo by Mohd Fazlin Mohd Effendy Ooi.

Profiles

How Crohn’s and Depression Pushed This Man Into Law School

After chronic illness caused him to spiral into depression, JD Ward is studying to help people like him from falling between the system's cracks.

Before being diagnosed with Crohn’s Disease at the age of 18, and subsequently suffering a blood infection that almost claimed his life, JD Ward had never experienced anxiety or depression. But he says that physical and mental health are inextricably linked. And he wants to use his experiences to help others with mental illness.

In the years before his diagnosis, JD was part of more than one band, routinely traveling and playing in front of crowds. Having been given a guitar at the age of 12, he found in music an emotional outlet as well as a part-time job. Even though he describes himself as an antisocial introvert, being on stage never bothered him.

J.D. Ward.

When he began to get symptoms of a mysterious illness at 17, JD left the music circuit and returned to his family home. He was soon diagnosed with Crohn’s Disease, and put on medication to help manage the illness.

But all would not be well. In 2012, the medicine reacted with a virus and caused the life-threatening blood disease Hemophagocytic Lymphohistiocytosis.

“For all intents and purposes, HLH is like cancer,” says JD, who, near death, spent time in intensive care receiving multiple surgeries and cancer treatments. “It is in remission now, but it could come back.”

While being treated, JD had to give up his job and was given a colostomy bag for eight months. He struggled to adapt to his new life, and eventually made the decision to go back to school.

Initially, he signed up for pre-med. He says the idea behind studying medicine was that he wanted to be the one in the doctor’s chair, rather than the patient.

After a year, he decided to change direction and chose a double major in law and psychology. He hopes to use the combination to help people with mental illness, especially those within the legal system.

“It can be hard to find people who can empathize with physical and mental illness, when most people haven’t experienced it. So they don’t know how to respond.”

It took several years for JD to get his own diagnosis of anxiety and depression. Even though his father works as forensic mental health nurse, he felt unable to talk about what he was experiencing.

“I knew if I went and talked to Dad, he’d know what to do, but I still couldn’t do it. But it was him that helped me get diagnosed with depression, when I was in the hospital recently.”

“Once I’d accepted that I had a mental illness and I needed to get help, it was a lot easier to keep the conversation going.”

“Once I’d accepted that I had a mental illness and I needed to get help, it was a lot easier to keep the conversation going,:

Living at home while he’s studying means JD can have these conversations whenever he needs to. His father and his brother both work in the same criminal mental health unit, so JD’s interest in the intersection of law and psychology seems to run in the family. He says it felt like a natural pathway.

“I’m not sure exactly what job I’m going to have, but I want to help ensure people with mental illness retain their human rights within the legal system. People with mental health difficulties are often underrepresented and can slip through the cracks.

For example, if you’ve been contained under [New Zealand’s] Mental Health Act you lose your autonomy because of the risk to yourself or others, but it’s so important we make sure people are not devalued, that their rights are still upheld when that happens.”

JD has three years left before he will graduate with a Bachelor’s Degree in Law and a Bachelor’s Degree in Science and Psychology.

His Crohn’s Disease, while controlled more than ever before with the chemotherapy medications Remicade and Methotrexate, is an “ongoing battle.” As well as having low energy and appetite, he is on the waiting list for surgery on a fistula: a tract in his gut that leaks and never heals.

A typical day for JD means getting to the gym, getting to class, and getting home to rest. Those things will all be impacted by how many bathroom trips he might need, how much food he can eat during that day – and whether or not his mental health is playing ball. If it’s a bad day, he may not be able to do any of those things.

He also still plays guitar, and says it’s an essential hobby that helps keep him grounded, as well as an emotional outlet.

Now at law school, JD wants to practice law to defend the rights of those with mental health issues.

“I get pretty angry sometimes, music helps with that. I’ve come to terms with my illness, but sometimes a doctor might say certain things, and it gets to me.

“It’s unhealthy to deny yourself that right to be angry. I spent a long time not accepting the full extent of what I’d been going through, it became really hard to reconcile everything. Once you do accept it and you get angry and upset – then you can let that go and move forward.”

It’s unhealthy to deny yourself that right to be angry… Once you do accept it and you get angry and upset – then you can let that go and move forward.”

The music is another thing he shares with his father, who has been playing since before he was born. JD has put some of his own recordings online, but says that can make him feel pretty anxious.

“It’s quite a vulnerable thing to do, and you have the anxiety about criticism or judgment over what you’re sharing.

“You have to write crap before you get to the gold. And you don’t want to, of course, you’ve got the anxiety of how people might react to that.”

When he thinks about his life in ten years, JD says he hopes he’s in a position where he’s helping make people’s lives better.

“In this day and age, mental health is still in the background, so we need more people bringing it to the forefront, and protecting the rights of people while we do it.”

Essays

TV Dinners With Anxiety

For someone with general anxiety disorder, eating in front of the TV isn't about laziness. It's about self-preservation.

My husband and I have a dinner rule: If it’s in a bowl, it’s okay to eat in front of the TV. On a plate, and we sit at the table.

It’s not a particularly onerous rule, but it’s one, more often than not, which I have trouble following.

Such as tonight. The table is set with plates. My husband is finishing making dinner.

“Do you want to watch a Mindy?” I ask planting myself firmly on the couch, remote in hand.

He looks at me. We both know I’m trying to lure him away from a sit-down meal away from our Formica-and-chrome kitchen table. Sitting side by side on the brown couch we bought from the damaged section, we can direct all our mental and emotional energy towards the TV, instead of at each other.

I have generalized anxiety disorder. What that means is that I often feel inexplicable dread uncurling from the pit of me, worries gnawing away at the background of my mind, few of which have any bearing on real life. I lay awake in bed at night, obsessing over how I’ll die: inevitable car crashes, unavoidable brown recluse bites, fires that burn down our home. This is the panopticon of my paranoia, in which I am perpetually kept in solitary confinement.

Sitting down in front of a TV show, I know I won’t have to tell my husband about my anxieties.

For me, my day is my fears, my worries, my thoughts. Which is why I like to eat in front of the TV. Sitting down in front of a show, I know I won’t have to tell my husband about them. Instead, I can tuck my anxiety manageably away for an hour, then–god willing–have a normal conversation with my husband. I can connect. I can escape the trap of my own mind.

Because I so often want to watch TV while we eat, I often worry that my husband will think that I don’t want to hear what he’s thinking: his hopes, his fears, his passions, his thoughts. Nothing could be further from the truth. I want to know what’s going on in his head, I just don’t want him knowing what’s going on in mine.

Though I know this isn’t true, I live with a bone-deep fear that, if I spoke my thoughts aloud, he would stop loving me. And even if I could convince myself in the moment that speaking wouldn’t render me immediately and permanently unlovable, to explain my fears is humiliating.

I know my anxieties are ludicrous and unfounded, but after years of trying to medicate or cognitively therapize them away, they’re still a part of me.  They are part of my body, and they never go away.

So we eat dinner in front of the television, more nights than not. And after dinner, I’ll toss out another well-worn ploy to delay connecting about out days. “I’m trying to decide,” I say, “whether to go get some ice cream.” Most nights, my husband says, “I’ll go with you,” and we’ll go the grocery store, and come back with a huge plastic bag of snacks.

Perhaps it’s that old trick of automobiles encouraging difficult conversations as you stare ahead, as if at a TV, instead of looking at each other, but it’s often on these snack runs that I feel most alive and most connected to my husband.

One day we will again only eat in front of the TV if dinner is in bowls. Until then, I’ll take these connections where they come… and feel forever grateful to be with someone who accepts me for who I am.