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May 5, 2009

"The Soloist," schizophrenia, and my family

On Friday night, I took my 11-year-old son to see The Soloist, the new film starring Robert Downey Jr. as Los Angeles Times columnist Steve Lopez who befriends a homeless, schizophrenic man named Nathanial Ayers (played by Jamie Foxx), who also happens to be a gifted Julliard-trained classical musician.

Some might question my maternal judgment in taking an 11-year-old boy to see a movie that deals with such adult topics as homelessness, poverty, street life, and mental illness.


I had my reasons, and not just because, at his age, he wants to experience thought-provoking works of art and entertainment. I figured he might want to see a movie that tries to honestly depict mental illness.

That’s because he and I live with someone who has schizophrenia.

That someone would be his father and my husband.

My husband of 18 years has given me permission to disclose information about his illness in this blog. He’s at a point in his life when he wants to become more public about himself, his struggles and his successes with living with his illness. He wants to help the public better understand a disease that afflicts about 1 percent of the population, or 2.2 million Americans.

My husband has what’s more specifically called schizoaffective disorder. In simple terms, schizoaffective disorder is a combination of schizophrenia and bipolar disorder. He hears voices and experiences delusions and paranoia—the disorders of thought—that are typical of schizophrenia. He also suffers the mania and severe depression and anxiety—the disorders of mood—that come with bipolar disorder. In his form of bipolar, he has more of the depression and less of the mania.

He has been dealing with these symptoms in one form or another most of his life—since early childhood, as he has come to recognize. Mental health experts talk about schizophrenia and bipolar striking people in their late teens and twenties. But more and more, these experts are learning that the onset of these symptoms can begin much earlier. Young kids, or kids in early adolescence, may not be ready to understand that the strange things going on inside their heads mean they need help. They also don’t have the language to explain it. Kids, starting in pre-teens, also are so eager to fit in and be “normal” that they might not be willing to reveal private thoughts that would label them as anything but “normal.”

In support groups I attended, sponsored by the Contra Costa chapter of the National Alliance on Mental Illness, I heard parents talk about how they knew that their children—later diagnosed with serious illnesses—were “different,” even at a young age. One mom, whose now adult son was in and out of hospitals with bipolar disorder, said she knew something was different about her son when he was an infant. She said the way he cried was much more “intense” than her other kids.

My husband knew he was pretty sick by his early teens.

But he kept it to himself. Even at 12, 13, he was perfectly aware what was going on, and could express it. But he didn’t seek help. Why? When he was growing up in the ‘70s and ‘80s, the medical and mental health community was still very much in the dark about how to deal with people who hear voices. He had an aunt with schizophrenia who was locked up the rest of her life in a mental hospital (Yes, these illnesses do run in families).

My husband was terrified of suffering the same fate.

I recently read an amazing book, The Center Cannot Hold: My Journey Through Madness. This 2007 book is a beautifully written memoir of suffering from and learning to live with schizophrenia. The author is Elyn Saks, a Yale- and Oxford-educated professor of law, psychology, and psychiatry and the behavioral sciences at the University of Southern California. She describes how, in the ‘70s and ‘80s, in between studying philosophy and law at top international universities, she was locked up in hospitals, restrained, straight-jacketed, misdiagnosed, and under-treated.

It wasn’t until the ‘90s that she started to 1) accept that she had an illness that required medication and 2) much more effective medication came along to treat psychosis.

There are some key things I learned from this book, and which my husband affirms from his own experience.

--Even with medication, the voices don’t always go away. Also, Saks effectively describes the experience of “voices.” She says in every waking moment, we all have sights, sounds, smells, and sensations vying for our attention, but the brains of non-ill people have “regulators” that help them decide what to focus their attention on. For mentally ill people, that “regulator that funnels certain information and filters out other information” suddenly shuts off. “Immediately, every sight, every sound, every smell coming at you carries equal weight; every thought, feeling, memory and idea presents itself to you with an equally strong and demanding intensity.” You live with a constant din, like being in a room with the TV, stereo, and a video game turned up full blast. Add a group of crying children to the mix.

--With my husband, he hears voices that are not “real,” but that—in his head—sound very real. My husband said his voices constantly told him cruel and abusive things like “you are a piece of shit. You should never have been born.”

When we started going out and when we were first married, I didn’t know what my husband was dealing with. He didn’t tell me, perhaps out of shame, but also thinking, correctly, that I wouldn’t “get it.”

He only told me about bouts of depression. My attitude then was “just snap out of it,” “adjust your attitude.” Why should he be depressed, I wondered, if he has such a great wife, a good career, and good friends?

I was very ignorant then. When it comes to mental illness, most of us just don’t get it. Why should we, if we ourselves have never had minds and bodies overtaken by the sound of these voices? If we’ve never been given basic health information about what mental illness is about? That it is ultimately a physical, biological illness—like diabetes or heart disease. That is has nothing to do with someone having a weak or low moral character. On the contrary, at least with my husband, he is one of the strongest people I know.

For us, it all came crashing down for us in 2001, and that's when I started to learn how sick my husband was. Up until then, he had maintained this façade of happiness and success. But he had reached a point in his life and in his illness when he couldn’t hold it together. Our son was two, turning three. My husband started to wake up every morning thinking, “this is the day I’m going to kill himself.”

There are many complexities to this 2001 crisis, which are, yes, too complex to go into right now. Simple version: there was a breakdown, two hospitalizations, an incarceration, and consultations with a series of mental health experts—psychoanalysts, psychologists, psychiatrists, marriage and family counselors, researchers at Stanford University. This process, and his current psychiatrist, led him to his current diagnosis, his course of treatment, and his “cocktail” of medications, some of which I don’t think were available 10 years ago.

One point that Saks accurately makes, which was the case with my husband: “A common misunderstanding is that people with schizophrenia are wildly psychotic all the time. Most, like myself, are not. When I am symptomatic, I suffer from delusions and hallucinations, and my thinking becomes confused and disorganized.”

The psychosis can float in and out, unexpectedly, even at different points in the day. The fact that psychosis is not constant means that some people can seem to function quite well and at high levels at school, work, and in personal relationships—like Elyn Saks or my husband.
And like Saks, my husband was very determined to accomplish certain things in life. He did well in school and in college, where we met. He studied at a top US university and had professors who wanted him to stay in school and earn a PhD in his field.

But he had other ideas. He wanted to travel, live overseas, see the world. He also wanted to do community service, and he wanted to fall in love, get married, become a father.

So, he worked hard to keep his voices in check, his outer mask of mental wellness on display. Maintaining that façade of sanity was pretty exhausting, but he had to do it, he says, because “I don’t like to lose.”

The cocktail of medications he now takes allows him to function pretty well—with some irksome side effects (fatigue, weight gain, shakes in his hands). Still, I am lucky that he is one of those people with mental illness who is able to comprehend that he is sick—many are not able to make this connection—and that he wants to do what’s necessary to stay as well as possible, for as long as possible.

He now works in a pretty demanding job. Actually, it’s a job that a lot of us would find stressful and exhausting, because he has to deal with big egos and works a lot of hours. He’s able to manage, he jokes, because he’s so medicated. His bosses know about his illness. They are pretty progressive in this regard.

So, he’s dealt with some pretty horrific things throughout his life. At the same time, he is a wonderful, loving man, with a lot of friends and family who helped us out when things got bad. It was a shock to everyone who knew him to learn he had been struggling much of his life with such private turmoil.

Seeing The Soloist on Friday prompted a family discussion on Saturday. My husband didn’t accompany us to the movie. He rarely goes to see movies these days, he says, because they make him psychotic.

But he was happy to hear what we had to say about the film. One thing, he immediately said is that my son has scolded him for referring to himself as “crazy.” My son doesn’t mind if his father talks openly about having a mental illness, but believes that his dad referring to himself as “crazy” is demeaning, and my son doesn’t like his dad putting himself down.

(I asked my son if he minded me having this blog, Crazy in Suburbia, or referring to myself as “crazy” Soccer Mom. No, he said, with a shrug and a smile. Even at 11, he understands that my “crazy” moniker is my own silliness, though, yes, I’ve got my issues. Ultimately, my son is able to distinguish between his mom’s brand of craziness and what’s going on with his father, which is very real and very serious. )

We told my husband about the need of Jamie Foxx’s character, Nathanial Ayers, to live outside on the streets, and to play his music amidst the noise of the city and of traffic. As he gets to know Ayers and to understand schizophrenia, Downey’s Lopez learns why Ayers needs to be outside. The city noise drowns out the much more troubling and scattered cacophony of voices inside Ayers’ own head. My husband said, yes, that’s the way it can be. The voices can be multi-layered, relentless, contradictory, and confusing. It’s not like the sound loop of thoughts that non-ill people have playing in our heads throughout the day.

My husband also understood Ayers’ need to constantly play music. My husband played French horn in high school, and he said playing music quieted his voices. He also said that he didn’t hear voices when he played tennis or read. So, growing up, he played a lot of music, did a lot of reading, and played a lot of tennis.


I told my husband how the film also shows Ayers, in flashback as a boy, beginning to withdraw into his music—as the illness and the voices begin to descend upon him.

Some critics have poked at The Soloist for not having a more “dramatic” or “uplifting” resolution. I think they were looking for Downey’s columnist character to get Ayers into treatment, where Ayers would “see the light,” start taking meds, resume his professional music career, and have a stellar debut at Carnegie Hall. Or some such nonsense.

I loved how the film showed that there is no cure—no easy resolution—when you’re dealing with something like schizophrenia. I found the delicate and unconventional connection made between these two men to be truthful, and therefore dramatic and uplifting. No, Foxx’s Ayers does not become cured. He doesn’t even accept that he has schizophrenia and start taking medication. But he makes a friend, reconnects with his sister, and continues to play his music, privately and on his own terms.

Saks points out the long list of people with mood disorders, such as depression or bipolar, who have led full and famously productive lives: Writers, artists, even historical figures such as Abraham Lincoln.

Unfortunately, there is no such list for people with schizophrenia. Saks says few people with schizophrenia lead happy and productive lives, or “those who do aren’t in a hurry to tell the world about themselves.”

My husband sometimes mentions various statistics, not to scare me, but to keep it real between us: such as about how half of people with this illness can’t live or function independently, and suicide is the leading cause of death. He also tells me that, all of a sudden and without warning, his meds could stop working, and he could wake up one morning with full blown psychosis. And not know where he is, who he is, who we are. That happened with a woman he met in a support group he attended.

But he’s pretty happy with his meds right now, feel that they are doing what they need to do, and more and more he shares things with me about what it was like for him growing up, what it is like for him now. Most of all, he feels immense gratitude: for being sane. For being in the place in life he is now. That’s my dramatic, uplifting ending to this story. For now anyway.

To be continued ...

For more information about mental illness and schizophrenia, visit:

14 comments:

Anonymous said...

excellent. My sister suffers from schizophrenia and though it works best for her that she does not have a lot of contact with her family of origin (sets her off and who knows why), when she is well medicated she is able to be President of the PTA, officer in non profits seeking to do environmental work.

Also is proud mom of two very great kids and has husband who now gets it, though he's weird in his own way too.

So thanks - good to hear about that.

Jojo Potato said...

You are one brave Mom. Keep on writing and sharing, and caring. All the best to you and your family.

Anonymous said...

Beautiful post, Soccer Mom. My nephew is bipolar and I so wish people understood him better (and his illness, too.)

Kate

De La Salle said...

Great Read Soccer Mom. Has your husband been able to identify his own personal "triggers" (stresses), or are they the common emotions one feels throughout the day?

Anonymous said...

A p.c. chickflick. Poor kid. Next I expect you to take him to "Milk"

momgroeb said...

Dear CinS,
I know your pain as a person that loves some one with this horrible disorder. I have a 22 year old daughter that has it. I am sure that it came from her father but I left him while she was a baby because he would become so violent.
I understand the music aspect too. The hard part is that these children (mine) could hear an interment pick it up and play it. In the 2nd grade she had a 10th grade equivalency. I used to believe that we could beat this and that as long as she stayed involved the disorder would not take over her. Finlay a teacher asked me if I would make her play base ball with a broken arm? It was then I saw I was expecting her to control some thing that she could not. She did not become the concert violinist that I had dreamed she would but she is a good mom and when she feels MANIC she calls me and I talk her down or listen to her rant. She knows I love her and I will Always stand by her as I see your husband feels that in you. He is so lucky to have you as a wife.
I applaud you for taking your son to help him understand more. Another good movie that addresses this is "A Beautiful Mind" it too is a true story.
Thank you for shearing sometimes we feel like we are the only ones.
Kathy (mom of Katie Grace 6 PHer)

Anna, The Lemon Lady said...

Soccer Mom,

Thank you for writing. Most people cannot understand any type of mental illness, let alone something so "different", yet more common than the public realizes.

I need to read more and write more to you! Love your blog, you are kind.

Anonymous said...

I appreciate your thoughtful and realistic attitude. I'm sure it hasn't been easy. For many people, living with someone with schizophrenia is impossible. And even dangerous. Many people with the illness have no interest in being with or near family, or even in "society" as we know it.
The medication journey, as you point out, is unpredictable and mixed. Comments point out that you're brave. So is your husband. I hope you have support for your son if he desires. This could be anxiety provoking for him, and he may feel the need to be tough for mommy and daddy. As they are.
Thank you.

sflovestory said...

I cannot thank you and your husband enough for "outing" yourselves.

It is so, so important for those of us with mental/mood disorders (and our friends and family) to stand together and show the reality of these diseases...and who they affect (e.g. "normal" seeming people, too).

It's one of the last bastions of things-we-aren't-supposed-to-talk-about and my sincere gratitude to you for your courage and wisdom, as well as humble attitude.

sflovestory said...

Oh, and thumbs up to your husband's employer, too! (Mine is also aware and supportive, but I realize this is rare.)

Soccer Mom said...

Hello readers,
I'm very heartened by everyone's feedback. Thanks so much! This has turned out to be a rewarding day, reading your comments. If what I have written has been useful to someone else, that's great. That's why I wanted to write this.

I think there are a lot of us out there, who have a mental illness or love people who do.

My husband is the real hero here. Absolutely. He's writing, and he's a great writer. Funny, honest... I can't wait for him to go public.

I have learned SO much from him. He's my best friend, and he's my heart. He's a terrific person, friend, husband, father. I'm very lucky to have him in my life.

I've got a great kid, too. Smart, intuitive. He's taken on a lot so far in his life. And, yes, we have worked, with a therapist, on better family communication, so my son feels comfortable asking us questions. We don't want him to feel that there is anything taboo or shameful about his father's situation.

We want to keep our son informed about what's going on, without burdening him too much. He's a kid after all, but he's handled some things in his life so far with remarkable maturity and insight. We did learn that it is not helpful to kids to keep their parents' illnesses a secret, to cloak it in shame. We talk about issues as they come up, when he has questions.

To De La Salle: Thanks for your question. I asked my husband about particular triggers, and he said, no, he didn't have any triggers that really stand out. Anything can trigger an episode. Fortunately, he hasn't had a serious episode in a while. Basically, the "voices" are always there, I guess, hovering on the periphery.

He's had a few instances of saying, "the voices are getting worse," and he immediately checks in with his psychiatrist, and he and his doctor make necessary adjustments.

He says he doesn't like crowds, and, yes, he's not a big TV/movie fan--because the visuals make hims "psychotic." Yet, he's married to me, a "recovering TV addict" and movie fiend. Oh well...

As I said, my husband is an amazing person, strong, compassionate, wise. And I'm a much better person to have him in my life.

Anonymous said...

Thank you. Thank you partcularly for the links. My son hasn't been diagnosed but he has many symptoms and refuses to get help. I will follow thru with those links you provided.

Anonymous said...

My husband has bipolar with psychotic features. It took years to get this diagnosis. He has the often associated anxiety and a mild case of OCD.

He's been through inpatient and outpatient hospitalizations, and has been stable for several years. My husband too has side effects like weight gain and shaking from the Depakote, Seroquel, Trileptal, et. al., but taking the meds is the lesser of two evils.

I guess what really bothers me the way people can be really insensitive. They use terms like schizo and bipolar in a joking manner, and to many people, bipolar equals spousal abuse. In reality, many people with bipolar and other mental illnesses are happy and live full lives. They're like everyone else, but they live with a chronic illness.

Spencer Pazer said...

I recently saw a real life version of this film. Not the exact same story, but it's a very well done documentary called My Name is Alan and I Paint Pictures.

If you liked The Soloist you would definitely like My Name is Alan. It follows a street artist in New York who has schizophrenia and has been using what he sees and translating that onto his art.

I just found the website at mynameisalan.com

Definitely check out this real life film.