The following is a piece I wrote for Good Men Project that ran yesterday. This essay was written for GMP’s Men and Mental Illness section. Isn’t it time to take the stigma out of mental illness?
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 riskfor 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.
I felt my own discomfort about the term “mental illness” while writing this piece. As I mentioned, it sounds to me like a dated, gothic term. I like the term “psychiatric disorder.” Anyone have any other ideas?
While I appreciate the sensitivity of this article and agree completely with you about evolving views of mental illness, I take offense (well, maybe not offense, but certainly objection) at your comments about disability in general. From the first comment of your husband that “I couldn’t handle a kid that’s messed up” to your final, italicized paragraph where you opject to the lumping together of those with mental illness and those with cognitive disabilities (because they couldn’t possibly be successful???), I’d venture to say that your own views of disabled persons need to evolve. You know these issues are “my thing,” and I hope you don’t take offense to my forceful comment, but I have to say that I was taken aback by the general tone of this post, particularly as it applies to those with intellectual disabilities.
Elizabeth, I’m sorry the tone of the piece offended you. I didn’t mean to say that I agreed with my ex’s statement, because I don’t. I was reporting what I think a lot of people feel when they imagine the child they will have; many are tied to the idea of a fantasy child and struggle to let that go.The aim of this piece was to take the stigma out of mental illness, so I apologize if it felt that I was adding more stigma on to individuals with other kinds of challenges. I will think about what you said and you may be right that my “own views of disabled persons need to evolve.” I really only have experience with a child with psychiatric issues and I don’t have experience with a child with physical, developmental, and cognitive issues. I appreciate your weighing in and I always value your point-of-view.
As the parent of a son with schizo-affective disorder, I symphathize with your feelings since we all want our kids to be “normal.” I do want to add my own thoughts about your post, however. While having a psychotic disorder certainly makes life more difficult, it doesn’t have to doom a person to a nonproductive life. For that matter neither does having a lower than average IQ, but, yes, we want our kids to be perfect and accomplishing great things. Life, however, has a way of surprising us. As for changing the name “mental illness” … I’m not a PC-type person because a few years after a name is changed it often takes on the same connotation. Only people speaking openly, without shame, about MI will change anything, but if I were going to make a change it would be to brain diseases or disorders because I believe they are biologically based. BTW, my younger son is graduating from law school in May. So you just never know.
Thanks for your comment, Waywardweed. Both your comment and Elizabeth’s certainly have me reflecting on my own conceptualizations of disabilities. I’m wondering if you read Ellen Saks’ book THE CENTER CANNOT HOLD? It’s an incredible memoir written by a lawyer who is also schizophrenic and it describes what she went through to achieve accomplishments that most neurotypical people never do. There was also a NY Times article about a year ago about a successful professional woman with schizoaffective disorder who uses a helping dog to help regulate her moods. Fascinating. Your younger son, the one with schizoaffective disorder, is he the one who is graduating from law school?
An interesting post, as always, and some interesting comments, too. With regard to the definition of successful, Where my own bi-polar/schizophrenic son is concerned, I have changed the meaning of that word over the years, from world famous architect (my dream…) to alive, to in a meaningful relationship and not in jail.And he’s really trying, which is a success in itself.
Great point, Gabi — our definition of success for our children also needs to evolve as they grow.
I think your ex-husband’s definition of “successful” and assumption that he and his offspring are entitled to the benefits of his definition of “successful” color his responses to your son’s illness. I don’t think that your ex-husband can accept any kind of disability, illness or special needs, hence his insistence on the amnio, which is a means to weed out what your ex-husband thought were unacceptable traits which he was honest about not being able to handle. If there was a test for mental illness (or whatever you want to call it), he probably would have insisted on that as well, and insisted on terminating a pregnancy that showed that the child would be “flawed.” (Putting words in his mouth, not mine). This is how I see your ex-husband. I don’t agree with his thinking on the topic and certainly not how he would call a child “messed up.” Medical science just can’t screen for all illnesses prior to birth. That’s all. Considering what your husband feels entitled to out of life, it seems to be a case of “I did not see this coming” on his part. No one does, Prince. No one does. Deal with it.
By the way, I don’t judge anyone who has an amnio, or makes a decision either way based on the results. I’m just talking about how Prince seemed to view it. (My Ex was big in favor of amnios as well). I had one, but refused for subsequent pregnancies. Having children is a huge risk, along with all of the blessings. Perhaps for Prince it was the first time that he was embarking on a project over which he did not have complete control. It must have been very difficult for him. (insert sarcasm)
And another thing, Prince seems to derive his success from “good” upbringing, status, and money. These kind of successes do depend on how one looks and appears and manners. In Prince’s world, other than having a good education and varied life experiences that the privileged can always get — i.e. travel, etc., there is no need for other special talents or desirable traits — like being a good person, or having faith, etc. that make one a success. Success, to Prince, it seems, is going to the right schools, marrying well, getting the plum “position” and living the life. If that is his definition of success having a child like Luca is a clear failure because he might not follow the traditional “good on paper” path. and even if he does, he’ll do it in his own way. Prince’s view is limited. Some people are successful because they excel in their field, a special talent, being a good friend or caregiver, being independent — and they are successful in these areas while dealing with a “disability” or “mental illness” or whatever because they are allowed to flourish in these other areas while treating the struggles. Prince doesn’t sound like he has “other areas” or that he considered that Luca might find success in these other areas, despite his struggles. So, no, he’s not going to talk about “mental illness” because in his very limited view, this does not fit into the path preordained for his son. Luca could be an Einstein but it wouldn’t fit into Prince’s world. Quirkiness, even by a genius, is unacceptable. It’s all about appearances. So no, he’s not going to talk about it.
You need to know what is wrong with your son so that you can figure out what to do, what is best and get confirmation that this is indeed a serious concern. Prince needs to know that his son is struggling because of outside factors he can control and eliminate and put his son back on the path of (Prince’s) success.
Anyway, I think I get that you were exploring why Prince can’t seem to deal with the fact that Luca has some serious issues and struggles ahead. My short answer is because he’s a jerk. Or, perhaps Prince himself has some psychiatric disorder, perhaps narcissism or he is a sociopath — a person who has no capacity for empathy. Just saying.
I think your ex-husband’s definition of “successful” and assumption that he and his offspring are entitled to the benefits of his definition of “successful” color his responses to your son’s illness. I don’t think that your ex-husband can accept any kind of disability, illness or special needs, hence his insistence on the amnio, which is a means to weed out what your ex-husband thought were unacceptable traits which he was honest about not being able to handle. If there was a test for mental illness (or whatever you want to call it), he probably would have insisted on that as well, and insisted on terminating a pregnancy that showed that the child would be “flawed.” (Putting words in his mouth, not mine). This is how I see your ex-husband. I don’t agree with his thinking on the topic and certainly not how he would call a child “messed up.” Medical science just can’t screen for all illnesses prior to birth. That’s all. Considering what your husband feels entitled to out of life, it seems to be a case of “I did not see this coming” on his part. No one does, Prince. No one does. Deal with it.
By the way, I don’t judge anyone who has an amnio, or makes a decision either way based on the results. I’m just talking about how Prince seemed to view it. (My Ex was big in favor of amnios as well). I had one, but refused for subsequent pregnancies. Having children is a huge risk, along with all of the blessings. Perhaps for Prince it was the first time that he was embarking on a project over which he did not have complete control. It must have been very difficult for him. (insert sarcasm)
And another thing, Prince seems to derive his success from “good” upbringing, status, and money. These kind of successes do depend on how one looks and appears and manners. In Prince’s world, other than having a good education and varied life experiences that the privileged can always get — i.e. travel, etc., there is no need for other special talents or desirable traits — like being a good person, or having faith, etc. that make one a success. Success, to Prince, it seems, is going to the right schools, marrying well, getting the plum “position” and living the life. If that is his definition of success having a child like Luca is a clear failure because he might not follow the traditional “good on paper” path. and even if he does, he’ll do it in his own way. Prince’s view is limited. Some people are successful because they excel in their field, a special talent, being a good friend or caregiver, being independent — and they are successful in these areas while dealing with a “disability” or “mental illness” or whatever because they are allowed to flourish in these other areas while treating the struggles. Prince doesn’t sound like he has “other areas” or that he considered that Luca might find success in these other areas, despite his struggles. So, no, he’s not going to talk about “mental illness” because in his very limited view, this does not fit into the path preordained for his son. Luca could be an Einstein but it wouldn’t fit into Prince’s world. Quirkiness, even by a genius, is unacceptable. It’s all about appearances. So no, he’s not going to talk about it.
You need to know what is wrong with your son so that you can figure out what to do, what is best and get confirmation that this is indeed a serious concern. Prince needs to know that his son is struggling because of outside factors he can control and eliminate and put his son back on the path of (Prince’s) success.
Anyway, I think I get that you were exploring why Prince can’t seem to deal with the fact that Luca has some serious issues and struggles ahead. My short answer is because he’s a jerk. Or, perhaps Prince himself has some psychiatric disorder, perhaps narcissism or he is a sociopath — a person who has no capacity for empathy. Just saying.
Roxanne, you make so many astute comments here. For me, what really resonated was your take on privilege, that it actually can kind of cripple people when they experience something outside the realm of a rarefied life. Thank you for taking the time to read, and to offer your feedback.
Yes, I did read it and found it remarkable. I know many people with schizophrenia and few make it to her level. If they invested the money in MI that they do on cancer or heart disease, for instance, there would be more progress. MI is at the bottom of the barrel even though it is so common.
It’s my younger son in law school. The older one is the one with schizo-affective disorder. He lives independently but gets a lot of support from the local mental health agency (assisted outpatient treatment.) He collects disability and does not work.
I was told by one of my kids’ therapists to have that kid evaluated for schizophrenia a few months ago. I can still feel the physical sensation of absolute panic I had when I heard the word schizophrenia. I had a flash of my kid, locked forever in a mental institution, never having the chance to create a life of her choosing. It was like a death sentence. You’re all right: we need better words, more funding and research, more understanding of the range of psychiatric disorders. My kid’s diagnosis was not schizophrenia, but that experience has changed me forever because I realized that I would do whatever I had to for my kid to achieve her own independent life, whatever that might be.
Thank you, Pauline, for writing about Prince’s responses. You’ve helped me clarify what I saw with my own estranged spouse…I couldn’t quite put my finger on it.
I’m new to your site…kind of backed into it today after an exceptionally hard few weeks with my son, who I sent to live with his father last night. I keep reading this saying “I didn’t write this did I?” It’s weird to feel so alone for so long and then suddenly read someone telling your story.
Glad you found my blog, EJ. You are defnitely not alone.