In the spring of 2007, the clinical director of Camp Wish, who was also my coworker at the Stanford Department of Psychiatry, told me that my experience with clinical interviews made me an excellent potential volunteer for a youth bipolar camp. We were standing in front of the office elevator. I smiled and told her to send me an application, but I didn’t tell her what I really thought.
As I stepped into the elevator, I envisioned seventy-two hours with nine-to-eighteen-year-old kids with bipolar disorder. They might be hallucinating. They might have multiple diagnoses, including Asperger’s, attention-deficit disorder (ADD), attention-deficit/hyperactivity disorder (ADHD), pervasive developmental disorder (PDD), and oppositional defiant disorder (ODD). At their worst, they would be shouting, screaming, crying, and possibly violent. At their best, they would want to—here I gave an inward, cynical shudder—play with me.
At the time I believed that my alleged dislike for children was likely rooted in self-deception. I used to eat sweets, and after I decided to cut back on sugar for dietary reasons, I learned to say, in lieu of a more thorough explanation, “I don’t like dessert.” For years I didn’t put sugar in my coffee; at times, I found fruit too saccharine. No one who met me during a particular decade knew that I had once gorged on cheesecake and caramels. Similarly, I avoided playing with children, because I was afraid of awakening a biological and emotional drive. I didn’t say, I don’t like children, but that’s what I thought every time someone tried to hand me a baby.
Yet I couldn’t get over the concept of sixty kids with the same diagnosis getting together to have a good time. To have bipolar disorder means that you might wrap your car around a tree in a manic frenzy, or spend your life savings on socks because you think the Ice Age is coming, or shoot yourself because the pain is just that bad, and very few people, except the estimated 1 to 2 percent of the population who share your diagnosis, will understand. Children with bipolar disorder may have a different form of the disorder than their grown-up counterparts, but their lot is just as bad, if not worse—according to the National Alliance on Mental Illness, “[Pediatric bipolar disorder] appears more severe and with a much longer road to recovery than is seen with adults.” I wanted to help the kids at Camp Wish, but I turned in my application to Megan with an ulterior motive: I also wanted to feel less alone.
Camp Wish was established in 2005 as a “typical” summer camp for bipolar children and adolescents who would have problems in a standard sleep-away camp setting—these problems perhaps being one of the reasons that the camp lasts for only three days. The setting is bucolic, with rolling yellow hills and a smattering of trees. A family foundation donated its grounds to Camp Wish, and were you to happen upon the camp, you might overlook the signs of severe bipolar disorder in the assemblage of nine-to-eighteen-year-olds in favor of the sight of the plush cabins, expansive dining hall, and vast recreational areas filled with young people engaged in macramé and basketball.
Bipolar disorder has yet to be fully understood in adults, and it is even more mysterious in children. Those with pediatric bipolar disorder have less-distinguishable mood states that can fluctuate rapidly, making the illness difficult to diagnose. Is a child who acts out in class suffering from ADHD, ODD, a manic state, both, or neither? Other behaviors associated with pediatric bipolar disorder include hypersexuality, hallucinations and delusions, suicidal behavior, violence, agitation, and impaired judgment. The very existence of pediatric bipolar disorder is controversial among those who believe that children are too young to be diagnosed with such a weighty mental illness, or those who think that diagnoses such as ADHD and ODD, in combination with unipolar depression, also known as major depression, are more fitting labels for the kind of irritability and rage that often manifest in said children.
The foundation that sponsored Camp Wish believed that pediatric bipolar disorder is a real and terrible thing. Its website—touching upon a commonly referenced statistic—mentioned that it affects approximately two million children in the United States. C. and I went to camp with sixty of them in the summer of 2007.
Aaron was stocky with close-cropped blond hair. He liked football and rarely smiled. Julian frequently smiled and wore a green bandanna around his neck. Mark wore the same clothes every day: a white T-shirt, cargo shorts, and a backward baseball cap. He collected small things like toy planes and pebbles to put in his pockets. Alex looked a lot like Julian, except for the green bandanna. Stuart, the smallest of the five boys, was short, thin, and had his shirt perpetually tucked into his shorts, with tube socks pulled up as far as they could go.
As head counselor of our four-counselor, five-boy cabin, C. carried with him a massive blue binder filled with surveys. These surveys, painstakingly filled out by the boys’ parents prior to coming to Camp Wish, covered the basics: comorbid (multiple) diagnoses, severity of bipolar disorder, food preferences, hospitalization history, medication regimen, and so forth. The surveys also covered smaller, though still essential, details. One boy could sleep at night only while listening to his iPod; all the boys had bed-wetting issues; they all enjoyed playing sports (which I dreaded). A question that I found particularly poignant in its frankness was “How do you and your child deal with the onset of rage or mania?”
For over a decade, I have not wanted, or even considered having, biological children, but these days I find myself frequently on the receiving end of unsurprising “news.” Where once the announcement “We have news!” from a couple almost inevitably meant a marriage announcement, the statement is now followed, particularly if the couple is heterosexual, by “We’re pregnant!”
Though those closest to me know exactly why I am not having children, and exactly why I am not considering adoption, either, I’m still asked by a healthy few if childbearing and/or child-rearing is part of my life plan. If I barely know the person, I say something vague about having a severe, genetic medical condition, and leave it at that. If pressed further, I talk about the medications that I take, their potential detriment to a fetus, the complications that are likely to ensue postpartum, and the genetic chances of passing my disorder on to my child.
And there is also the question posed to me by those who seemingly cannot bear the idea of my not having a child in my life: “But what about adoption?”
What I want to say is I have schizoaffective disorder. I was psychotic for half of 2013, and I could be psychotic again at any moment. I don’t want to put a child through having me as a mother. I am livid at the inquiry.
Once, I did want biological children. And then, hours after pausing in front of a children’s clothing store in San Jose, California, I did not. It was early in my relationship with C., who was then still only a boyfriend, still in his early twenties. I watched women purchase tiny pea coats and miniature blouses with Peter Pan collars, with my own shopping bags hanging at my sides. Later I called him and said, “I was at Gymboree earlier, and I thought of you.” Though he’d spoken several times of wanting to have children with me, this was the first time that I had, however vaguely, returned the sentiment.
He was quiet. “I talked to my mom,” he said.
I didn’t understand.
“She said that mental illness is genetic.”
“Oh. Never mind, then,” I said. “Forget I said anything. I didn’t mean it.”
At the time, I had been diagnosed for years with bipolar I disorder, formerly known as manic depression, and primarily characterized in the DSM-IV—the reference in use at the time—as a combination of alternating manic and depressive episodes. Symptoms of mania include a week or more of the following: grandiosity, such as believing one has magical powers; a severely decreased or nonexistent need for sleep; flights of ideas or racing thoughts; risky behaviors; impairment; and, in some cases, psychosis. Depression is characterized by two weeks or more of symptoms such as depressed mood, diminished interest or pleasure in nearly all activities, fatigue, and feelings of worthlessness. However, no textbook description of bipolar disorder can match the experience of the disorder itself. Kay Redfield Jamison writes, “There is a particular kind of pain, elation, loneliness, and terror involved in this kind of madness.” I was diagnosed with bipolar disorder immediately prior to my freshman year at Yale University, twelve years before schizoaffective disorder made it onto the page.
At six o’clock I watched Stuart eat. He was on a restricted diet and seemed sullen about it. The other boys chatted about their first day, which had been fairly normal—there was some aggressive behavior, mild arguing, and a few mood swings here and there, though running around after the boys had not been as bad as I’d feared. In fact, I’d been quite cheerful looking at the wild turkeys with Julian while the others played soccer. But I worried about Stuart.
“How many gallons are in a liter?” he shouted in a robotic monotone.
The boys looked at him, confused.
“Point two-six-four! What’s the largest dinosaur?”
Aaron snickered.
“Argentinosaurus!”
“Why are you asking us trivia questions?” Alex asked.
“They’re not trivia questions,” Stuart said stonily. “They’re science facts.”
Both Mark and Stuart had PDDs alongside their bipolar diagnoses. The most well-known PDD is autism; all PDDs involve delays in social interaction and communication. Mark had Asperger’s, commonly referred to as a more high-functioning form of autism. Stuart had PDD-NOS, or PDD not otherwise specified. Mark, however, was far more high-functioning than Stuart, who seemed unable to carry on a conversation unless it involved shouting science facts or reciting, in savant-like detail, the plots of the Harry Potter movies. Aaron was the first to point this out.
“Stuart’s a retard,” he sang out as we bussed our dishes.
“Stop it,” Stuart said, reddening.
“Isn’t he a retard? Retard, retard. And a crybaby.” Most of the temper tantrums that day had been Stuart’s, usually due to a spat over game rules. He enjoyed playing games but exploded whenever a rule did not act in his favor.
The other boys, sensing that Aaron had become the alpha male, joined in the mockery. We counselors jumped in—“Hey, that’s not cool”—but it wasn’t enough, and even now I am not sure what I, as unprepared and unskilled as I was, should have done.
My younger brother and his wife had a child last year. I am now an aunt, and C. is an uncle. We met our niece on the day she was born, arriving at the luxurious hospital room to take photographs and coo over the newborn. I did not hold her; I still have not held her. She knows who I am and will smile and wave when she sees me, her nose crinkling up as her eyes narrow with pleasure. I love her more as time passes and she grows increasingly autonomous, becomes a person.
K.’s entrance into the world fills me with gut-churning anxiety. The world is in chaos. Earlier this year, a president whose platform rode on xenophobia and racism was inaugurated. I also fear that K. will, as my brother’s daughter, inherit the genes that initiated me into the schizophrenias. I once read that to have a child is to be forever afraid, though that attitude may be applicable only to a certain type of parent; as K.’s aunt, I feel I must be vigilant when it comes to her mental health. Someday, if we are lucky, she will be a teenager. She will likely be feisty. At the same time, we know absolutely nothing about who she will end up becoming.
We counselors operated at Camp Wish—like most if not all parents—with little to no training and, though it pains me to say it, not much supervision. Because we were adults, the administrators at camp assumed that we’d act on our best instincts. If we came across a situation that we couldn’t handle, they told us, we should contact someone higher up.
In the afternoon, after a fight at the pool table, C. took Stuart on a walk to cool down. Stuart told C. that he had no friends at camp. His mother had told him that he would be able to make friends at Camp Wish, where the other kids were just like him, but things at camp were the same as they were back home—and we had no idea what to do about it.
“I’m your friend,” C. said.
“You’re not a kid friend,” Stuart replied.
That evening, when we were finally alone, C. said to me, “I just kept thinking about what school will be like for him when he starts middle school in the fall. He said he’d never had a friend in his life. It was just so goddamn sad.”
One day I spotted a hummingbird near the low stone wall outside of the Camp Wish infirmary. When I pointed to it, Stuart shouted, “Hummingbirds flap their wings fifty times a second!”
Around eight o’clock in the morning each cabin traipsed to the infirmary. Campers were required to be on medication, and so everyone, from the nine-year-olds to the eighteen-year-olds, would line up and take their pills.
There was a wide variety of pills, kept in plastic bottles and baggies in tubs: mood stabilizers like Tegretol and Depakote and lithium; benzodiazepines for anxiety; antipsychotics; even antidepressants, which can potentially induce mania, etc. I had taken seven kinds of psychotropics in my lifetime and was taking four that summer. Because I didn’t know if I was permitted to do so in front of the campers, I didn’t take my medications at “meds time,” opting instead to visit the infirmary later in the afternoon. I watched as a battalion of kids took their pills unblinkingly and without embarrassment, and then said good-bye to the nurses and reemerged into the fresh air. More unifying than camp songs, I thought.
“Retard,” Alex muttered, and the boys pointed at Stuart, snickering.
C. had been speaking to Megan and the administrators regularly about Stuart since the teasing began; eventually the bullying became brutal enough for the administrators to decide that Stuart needed to be moved to the other preteen boys’ cabin. C. and I gently informed Stuart, alone, that he was going to go to the next-door cabin, where things would hopefully be better for him. I was to be removed alongside Stuart and assigned to be his personal minder. Although Alex had bitten and kicked C., leaving a bruise that would last for weeks after camp, and Julian was suffering from constant hallucinations despite medication, Stuart needed the most care.
As C. and I prepared for the move, Stuart peered out the window and saw Aaron, Julian, Mark, and Alex playing touch football outside. “I want to play,” he said. C. and I looked at each other apprehensively, but C. eventually took him outside, and I stood on the sidelines, where I watched Stuart quickly make a touchdown. I brimmed with gladness as he cheered and pranced about the field—even the other boys applauded his excellent footwork. But then one of them accidentally bumped into him in the middle of the game, which caused Stuart to scream. C. took him off the field as he hollered and flailed. The other boys yelled, “Crybaby! Crybaby!” after them.
C. and Stuart came into the cabin. “We’re moving you now,” C. said, trying to sound upbeat. He’d told me earlier that Megan and the head psychiatrist had recommended moving Stuart at a time when the other boys were distracted. “They won’t notice that Stuart’s gone, and probably won’t say anything if they do,” Megan had said. “They’ll be too involved with their own business.”
So I took Stuart and his bags to the other cabin. Stuart looked nervously in my direction—he couldn’t make eye contact, a common symptom of PDD—and I sifted through the game box, looking for something for us to do with the least likelihood of causing a tantrum.
Then I heard the other boys come back to their cabin. “Hey, he’s gone!” a voice cried. “The crybaby’s gone!”
“Finally!”
“Woo!”
An eruption of yelling and cheering spilled from our former cabin. C. and the other counselors shouted for them to stop. Stuart’s face twisted, and I hurried him away from the cabins, taking him to dinner. In our absence, Megan visited C.’s cabin and spoke to the boys about bullying. It turned out that all of them were bullied at their schools back home.
I read in the New York Times that a child of a parent who has bipolar disorder is thirteen times more likely to develop the disorder than a child of a parent who does not. A piece on Salon about madness and motherhood, written by a woman with bipolar disorder, evoked the following reader responses: “I grew up with a bipolar mother, and it made my childhood nightmarish”; “I know I’m supposed to say I’m glad I was born but [as a bipolar child of a bipolar mother, I] am not”; “Someone who is mentally unstable enough to require psychotropics should NOT, under any circumstances, even consider having a child.” I read all sixty-eight comments. These I remember.
In back of the chorus of these internet commentators is my mother, who knew that she had a family history of mental illness when she became pregnant with me. At first, she was reticent about the breakdowns and suicides. As I grew older and my symptoms worsened, my mother at times expressed deep remorse and guilt at the fact that she had passed this “suffering” on to me, and presently tells me that I would be better off not having children. There are two issues here: one being the act of passing on a genetic burden, and the other being my ability, as a woman living with severe mental illness, to be a good mother.
At Yale and at Stanford, I commonly saw advertisements for egg donors in the backs of the Yale Daily News, the Yale Herald, and the Stanford Daily. The advertisements promised thousands of dollars for eggs from what was presumed to be good stock; I frequently met the SAT and GPA requirements, and occasionally met the ethnic requirements as well. To see me in the flesh and look over my curriculum vitae, one might be compelled to inquire after my eggs, which would eventually be rejected due to the advertisements’ request for “healthy” donors.
Neither C. nor his mother was being cruel when they brought up their concern about my genetic and emotional fitness. That year was particularly bad. I became manic; went a week without sleeping more than two or three hours a night, or without sleeping at all; couldn’t hold on to one thought without racing to another; scrawled ungrammatical nonsense in class; punched trees on Cross Campus. After the manias ran their course I became immobile, depressed, suicidal. I was hospitalized twice, for a total of twenty days. I had threatened to take an overdose once, had gone ahead and taken an overdose on a separate occasion, had been physically restrained in a bed in an ER, and had cut and burned myself innumerable times. C. and his mother were merely thinking about further consequences that I, surprisingly, had not thought of.
In the new cabin, life improved for Stuart. The new boys were far more patient with his social difficulties. Though he still had tantrums, and stalked off the field during another game of touch football, I do recall one thirty-minute session of Connect Four between Stuart and a particularly even-tempered camp veteran. I do not remember who won or lost.
Stuart was also quite funny. Upon being lowered from a ropes course that he refused to keep climbing, he joked with no embarrassment about feeling like “a ton of bricks on a construction site.” He tended to conclude all jokes with a loud bark of a laugh: “Ha!”
C. covertly organized a get-together at the pool between Alex and Stuart, which I cosupervised. They played without incident for hours. “Look at how cute your fiancé is with those boys,” another counselor said to me. “You must look forward to having children with him someday.”
On the second, and final, night of camp, Stuart began to suffer from some sort of respiratory problem. The only complaints he had were that his spit was thick and that he “couldn’t breathe right.” “This always happens,” he sobbed.
I took him to the infirmary. The doctor on call gave him his medication and inhaler and told him to go to bed early; I accompanied him to the empty cabin and he climbed into his top bunk, tears streaming.
“It feels so bad,” he whispered.
“I know,” I said. “Close your eyes.”
I was barely tall enough to reach the top bunk standing on my tiptoes, but I stood as tall as I could so that I could see him. “It’s okay,” I whispered. He shuddered with discomfort, squeezing his eyes shut and periodically wiping tears away with the backs of his small hands. I told him to try and relax. I stroked his bangs with the palm of my hand. I hummed Chinese lullabies, and the longer I stood and stroked and hummed and whispered, the stiller he became, until he was asleep. At one point I saw, out of the corner of my eye, C.’s face in the window of the cabin.
Later he told me, “You would make a good mother.”
“It was one night,” I said.
The next morning, during closing ceremonies, the camp leaders instructed the campers to go around the circle and say something about their Camp Wish experience. The preteen cabins had experienced a chaotic breakfast—Aaron, who’d mocked Stuart for much of camp, curled up in a corner of the dining hall and refused to move, and one of the boys in Stuart’s new cabin started screaming and crying about his need to go home, immediately.
In the circle, I sat in my folding chair and listened as each camper spoke about “making friends” and “belonging.” Then it was Stuart’s turn. He stood with his hands stuffed in his pockets. “At first, I didn’t like camp,” he said. “People were mean to me. And I didn’t think I would make any friends. But then I had fun and I made some friends. And I want to come back next year.”
I was glad then that I’d worn sunglasses, because I started to cry.
Would mental illness preclude me from being a good mother? I was fine at camp. I took care of the boys, and after I was removed from my first cabin, I took care of Stuart. But I hadn’t been suffering from a mania or a depression then, and I can’t imagine that I would have been allowed to care for someone else’s children if I had. And since then, having developed psychotic symptoms that transformed my diagnosis into schizoaffective disorder, bipolar type, I’ve seen myself forget to feed my dog. I’ve seen myself remember, and then not care enough to do it. Sometimes I can’t even say more than two words or move. There are periods when I know that my husband has been replaced by an identical robot.
My friend Amanda’s mother has bipolar disorder. She was hospitalized one Christmas early in Amanda’s life, and Amanda has hated Christmas ever since. My mentally ill great-aunt neglected her baby son so badly that she could no longer have custody of him. She died in a psychiatric hospital. One of my aunties tried to kill her husband with a chef’s knife. Could I be one of these women?
Then again, mothers act badly all the time. Perhaps the bigger issue is that bad parenting is the problem, schizoaffective disorder or not. I might damage my future children in a way that has nothing to do with mania, depression, or psychosis. Or I might compensate for my neurological defects by being an especially good mother—one who reads stacks of parenting literature and educates her children early on about odd behavior that might come up at home.
Stuart’s mother came to pick him up alone. She was a spry, cheerful woman who spoke to C. and me of Stuart’s riding lessons. Due to some of her comments, C. and I later guessed that she was a single mother working to give Stuart the best life that he could have. When she left to gather Stuart’s medications and paperwork from the infirmary, Stuart immediately entangled himself in an argument over air hockey.
“Let me play,” he said to two girls who had just settled down at the table.
“We just got here,” they said.
“Maybe you can watch them and then take a turn when they’re done,” I suggested.
“I want to play now,” he said, voice rising.
And this would be the reality of being with Stuart, or any child with a difficulty. It would be for twenty-four hours a day, seven days a week, three hundred and sixty-five days a year. Not one day at camp, or three days, or three weeks. A lifetime. Stuart’s mother eventually returned with his things, hugged him, and told him that it was time to go.
Stuart did not say good-bye to either C. or me. He just left, and we haven’t seen him since.
On the drive home C. and I were, at first, quiet.
“We could have a child like that,” I finally said.
A cousin to my mother’s remorse and guilt is an invisible, additional question that I have for her, that being: would it have been better if I’d never been born? Even though I’ve made my parents proud, I can’t help but wonder if that outweighs watching me break down over the years. Perhaps if my mother had been able to choose my genetics, she would’ve rearranged some things. I would be someone else entirely.
For all my fears about constantly watching over a child with mental illness, or any other severe disability, the very reasons that I thought I didn’t want children might be the ultimate factors that would end up changing my mind. I was surprised by my love for Stuart. He was smart and hilarious, and knew a lot of fascinating trivia. He and I also shared a diagnosis, and perhaps that, most of all, is why I had patience for his tantrums and oddities. “We could have a child like that,” I’d said—and indeed, we could.
After I had my IUD removed for medical reasons, C. and I began to discuss more-permanent forms of contraception. We talk about tubal ligation, Essure, and a vasectomy. And yet I insist that I don’t want a tubal ligation or Essure. I tell C. that a vasectomy would have more of a possibility of reversal. When I ask myself why I care about a possible reversal, I realize that I don’t know.
I had abdominal surgery in my late twenties. There was a giant cyst on my left ovary, and it needed to be removed; it had been possible that I would lose my ovary along with the cyst. When I woke up, the first thing that I remember asking the nurse was, “Is my ovary okay?”
She nodded. “Your ovary is fine,” she said. And then she added, “You already asked. When you came out of the general anesthesia, those were the first words out of your mouth.”