Part of loving a person with a psychiatric disorder, writes Pauline Gaines, is acknowledging that the disorder is real.
I did not want to get amniocentesis, an invasive screening test used to detect birth defects in fetuses. Pregnant with my first child, I was under 35, the age at which women are thought to be at a markedly higher risk for conceiving a child with chromosomal abnormalities.
But my then-husband, Prince, insisted. He came from a long line of overachievers who excelled in business, athletics, and social networking. His family put almost crippling pressure to succeed on all their children, but especially Prince, their only son.
We lay in bed one night as I was nearing the end of my first trimester. Prince was reading a magazine article about a family raising a child with Down’s Syndrome. He looked over at me, his jaw clenched, color draining from his face.
“I don’t think I could raise a kid that wasn’t perfect,” he said.
We argued over whether or not I should get the test. I was under the recommended screening age, and the procedure posed a risk of miscarriage. He insisted I get amniocentesis so we would know that the baby was “normal.”
“But we won’t know that,” I protested. “The baby could be born with a predisposition for something that doesn’t show up till much later. What if he’s a teenager and develops schizophrenia? We’d have to deal with it.”
“You have to get the test,” he said. “And if something’s wrong with the baby, you’d have to abort. I couldn’t handle a kid who’s messed up.”
I got the test. The chromosomes were normal. We learned we were having a boy. When he was born the obstetrician told us, “That’s one of the most gorgeous babies I’ve ever seen.”
Luca was gorgeous. He grew a mop of wavy golden hair. He had tawny skin and thick, dark eyelashes. As a toddler, he had a precocious way of engaging people, especially adults, who routinely asked me if he was a child actor.
Once I was in a make-your-own-ceramics store, holding Luca on my hip. I glanced up to find Paula Abdul gazing wistfully at my son. “If I have a baby,” she smiled at me, “I’d want him to look just like yours.”
One year after Prince and I lay in bed debating the risk of having an abnormal child, we lay in bed, night after night, basking in the narcissistic glow of having a son who garnered copious oohs and ahs. Luca was the unabashed favorite grandchild in Prince’s family and, as the only son of the only son, would be the only one to carry on the prominent family’s well-known surname.
Luca had “it”—an indefinable larger-than-life quality that took hold of any room he walked into. Everyone who met him agreed: this kid was going to be a star.
Luca was six when the calls from school began. The calls to schedule meetings to discuss “incidents” and “concerns” about his disruptive, impulsive, non-compliant behavior. The calls came more frequently. We tried behavior charts. Time-outs. Rotating therapists. Medication. A different school. Nothing worked.
Despite several different psychiatric diagnoses Luca received, and despite his being prescribed psychotropic medication, Prince refused to believe his son had anything that resembled mental illness. He blamed Luca’s troubles on me. On his school. On other people who didn’t treat him fairly.
Luca’s behavior problems erupted when Prince and I divorced. I hoped, as time went by and he adjusted to the separation that he would settle down. But as Luca careened towards adolescence, the problems got bigger. And scarier.
Drugs. School expulsion. Endless explosive outbursts. When the police came to my house for the second time, I realized I couldn’t keep Luca safe anymore. So I sent him to live with his dad, who maintained that Luca was “perfect” with him.
We couldn’t agree on how to help Luca, an impasse that triggered a horrific custody battle. Running out of money, and unable to tolerate the psychological warfare any longer, I gave Prince essentially full custody of Luca. For years, he had been telling me he could fix Luca. I knew that he couldn’t, but I also knew I had to let him try.
Just one year later, Prince sent Luca—now 14—to wilderness camp, then to an out-of-state therapeutic boarding school where he’s resided since September. Because Prince told me virtually nothing about what went on in his house, I didn’t know the extent of Luca’s behaviors until I read the results of the psychological evaluation administered to him at wilderness camp.
It was clear, from reading Prince’s interview in the psych eval, that he recognized the severity of Luca’s problems. But he was still blaming the problems on others. In essence, what he was saying was: if his mother had done a better job of raising him, if he had been in the right school, if those other kids hadn’t gotten him in trouble, my son would be fine.
My daughter Franny, almost ten, is the opposite of her brother—easy-going, resilient, compliant. She has the same set of parents as her brother yet completely different brain chemistry. Prince and I don’t deserve credit for her sunny personality anymore than we deserve blame for Luca’s genetic loading.
So why, in the 21st century, do people still equate mental illness with weakness? And why do Alpha-Men such as my ex-husband have a hard time talking about it?
When Luca was ten, he received a diagnosis (which has since been discarded) of pediatric bipolar disorder. When the psychiatrist uttered those three words, I felt not horror, but relief. Finally we had a name for the problem, and therefore a treatment plan. Finally we had an explanation for years of unexplained behavior. Finally I understood what was going on.
Prince denied the diagnosis, and all the diagnoses that have come since — except for ADHD, a more palatable disorder that has come to be almost synonymous with boyhood. In the psychological evaluation, Luca was quoted as saying that his dad refused to tell him the real reason why he was on serious psychotropic medication, stating only that it would help him focus in school. And he was understandably pissed about being lied to.
What is the effect of minimizing, or denying, Luca’s mental health issues? What meaning does my son make of his dad’s cover-up, which eventually got uncovered? That mental illness is so shameful we need to lie about it? That having faulty brain chemistry defines a person totally instead of comprising just one part of him?
The other day, Franny told me she worried about her brother at boarding school. “He just has ADHD, Mom, and the other kids have much worse problems. He doesn’t belong there.” I told her Luca did not “just have ADHD” and in fact, might not have it at all. I reminded her of the ways he was acting before he left for wilderness camp, of the behaviors that scared her so much she hid in her closet.
I don’t want her to grow up believing that her brother’s symptoms were just a phase, and that symptoms suggestive of a psychiatric disorder should be swept under the rug. I don’t want her to grow up believing that if you love someone, you enable his troubling behavior.
Most psychiatric disorders can be managed effectively, especially when psychosis is not involved. Depression, mood disorders, OCD, Anxiety—these conditions do not by default doom people to wasted lives. But blaming, minimizing, sticking one’s head in the sand—these are not effective problem-solving strategies and are much more likely to hurt a person’s chance for success.
Why do we believe that a man is less a man if he has depression? Those men who are transparent about their struggles with mental illness—men like Mike Wallace, Ted Turner, William Styron, Art Buchwald—seem, to me, more comfortable in their manhood than someone concealing his condition.
Clearly, the struggles of these uber-successful men didn’t stop them from being high achievers. The fear that a psychiatric condition will prevent someone from being successful is, I believe, at the heart of my ex-husband’s refusal to acknowledge our son’s problem.
No one should feel shame about mental illness in the family—not the person with the diagnosis, nor those related to that person. Everyone touched by mental illness needs to be able to name the problem and feel safe enough to talk about it.
Maybe we need to come up with a new name for mental illness, something more fitting, such as psychiatric disorder. How archaic are terms like mental ward and mental institution that conjure up gothic images of catatonic lobotomized patients or deranged zombies writhing on the floor? Mental illness implies that someone has low cognitive functioning, or is homicidal, which is generally not the case.
I hope some day our entire family can talk openly about Luca’s psychiatric disorder, a diagnosis that is constantly changing and may not crystallize until he’s in adulthood. I hope that Luca will grow up to believe that whatever his condition is called, it is just one aspect of his Luca-ness, like his mechanical ability or predilection for exotic food.
What I hope, most of all, is that he feels he is loved, and worthy of love, no matter what.