The Buzzz June 2009

When I grew up in a rural community on Maryland's Eastern Shore, I knew virtually nothing about mental illness, and although I heard occasional stories about "a town drunk," who behaved outrageously in public and then slept it off in the county jail, and there were off-hand references to "Cambridge," the home of the closest state mental hospital, mental illness did not touch me or my family in any kind of personal way, and "Do we need to take you to Cambridge?" was just Eastern Shore shorthand for, "Are you out of your ever-lovin' mind?" and never really had anything to do with real deviation from the norm or any kind of realistic picture of mental illness.

My mother had a friend who had actually undergone "shock therapy," in fact in the state mental hospital in Cambridge, and when her friend returned home from the hospital, my Mom took a yellow cake with chocolate icing and spent the afternoon visiting. Later, she told me that she felt sorry for Mrs. R., having to live with a husband who was probably abusive and an unmarried brother-in-law who was, at best passively aggressive, and after that, I don't know if my mother continued to visit her friend or not. the subject of Mrs. R.'s mental illness didn't come up in our conversations again. My mother didn't know what she could do to help. All she could do, as far as she knew, was hope for the best, so that's what she did. And mental illness remained an illusive, relatively rare, never discussed disability that seemed far away and far removed from my day-to-day life. As one of that huge generation of the Baby Boom, I don't believe my early lack of exposure to the topic of mental illness was all that unusual.

I don't know what ever happened to Mrs. R. I know she told my mom she would never return to the hospital for shock therapy treatments again. I hope she didn't have to. Her suffering occurred long before the availability of modern antipsychotic drugs, and who knows if they would have worked for her, or if she would have been willing to put up with their side effects in any case. I doubt that her home life improved in any significant way. Now my mother lives far away; she copes with her own crippling form of mental illness. It's called dementia and attributable to her age and Alzheimer's Disease, and it's the topic for another blog on another day. She probably hasn't thought of her friend for years and years, and I don't know if Mrs. R. ever found any relief or sought further treatment.

I moved away from home, and when I was a freshman in college, there was a girl on our floor who was kind of different from the rest of us. She said she believed in witchcraft, that, in fact, she was a witch herself, and there was a Saturday night in the dorm when she scared a bunch of us to death when she brought us together in a room lit by flickering black candles over a OUIJA board. A week or so after that late-night fiasco, we all heard that she had "cracked up," and then there were hushed references to a "nervous breakdown." She left school, and I never heard of her again. I wonder if she got the help she needed, or any kind of help at all, and I hope she is not a homeless person living on the streets of some skid row in some American city somewhere.

Back in the day, we kept mental illness under wraps. Out of sight, out of mind, that was the mantra. It was the same mantra for most disabilities, but especially for the disabilities with "mental" in their compound names. When did things change, and now that we know seemingly so much more about the diseases that can rob a person of a belief in the possibility of well being that keeps most of us going through the days of our lives, why have so many people with mental illnesses ended up on our city streets, collecting food from dumpsters, dodging rats and crime and each other, turning fruitlessly for respite to drugs and alcohol, finding little peace, little relief, little help? And, what can we do? Anything?

These and other telling questions have dominated my thinking, waking and sleeping, over the past week or so, when I read " The Soloist: a Lost Dream, an Unlikely Friendship, and the Redemptive Power of Music," by Steve Lopez , I couldn't put it down, and I went to see the movie which is based on the book over the week end.

Why did you want to see that movie, my family , who would really have rather seen the new Star Trek movie, were polite enough not to ask. Since they didn't ask, I didn't have to answer, I'm not really sure. The book was one of those books that carries me away. When I wasn't reading it, I was dreaming it, and although the Steve Lopez of the movie didn't exactly match the more introspective Steve Lopez of the book, Jamie Fox's Nathaniel * Anthony Ayers exactly captured the Nathaniel, er Mr. Ayers, of the book, and more. Why is the topic so fascinating for me? Is it because, when I was working in vocational rehabilitation, I knew people like Mrs. R., and like Nathaniel and on the continuum of mental illness in-between and often despaired about how to help them? Is it because depression and various anxiety disorders came home to roost in my own family and my circle of friends? Is it because of the "There but for the grace of God" go any one of us recognition that accompanies citizenship in a modern world where much that we believed in from job security to the reliability of our 401Ks has disappeared, robbing all of us of the basic faith in a future that was supposed to just keep on getting better? Or is it really because mental illness is such a presence in the landscapes of our lives, yet, as a society, we continue to ignore it, and I can't figure out why? In America, there are people sleeping on steam grates and in doorways, people who are obviously in pain, fighting against unseen, but real to them, demons, usually losing those battles, and after our initial shock during the Reagan Administration, at their sudden appearance on our city streets, we have come to expect to find them there, and, unbelievably, take their presence for granted. In the mid-1980s, the state mental hospitals and many of the private psychiatric facilities shrank to microcosms of their former size. They were called "modern-day Bedlams," and "hell holes;" there were countless exposés of patient abuse and neglect; and in an era when government became a widely-held definition of the problem instead of a possible solution, patients were returned to families unprepared and incapable of caring for them and to communities and neighborhoods with few-to-no local facilities that could meet their needs. Deinstitutionalization was the watch word of the day, along with promises about community mental health facilities that seldom appeared in the neighborhoods and never got the funding they needed to handle the masses of former patients streaming onto the streets.

it was wrong to make mental illness an Out-of-sight; out-of-mind phenomenon, but isn't it worse to make it an In Plain sight, but still out of mind phenomenon? And even if Steve Lopez might be accused by some of cashing in on his relationship with Nathaniel Ayers as he profits from the book and the film that cover the ongoing friendship between the unlikeliest of acquaintances, isn't his interest in, and friendship with Mr. Ayers preferable to our own Ostrich-like approach to the presence of mental illness and its disturbingly close relationship to homelessness on our city streets?

What can any one of us do to help the hundreds of thousands of Nathaniel Anthony Ayers' on the streets in our cities and towns? How did this happen? Were things better when society locked people with schizophrenia and bipolar disorder and PTSD and other mental illnesses away in the state mental hospitals back in the day? Better; or worse; for whom? What can any one of us do to befriend any one of the raggedy men and women pulling their shopping carts of belongings down the sidewalks we share, or to keep them safe, or dry, or warm during the winter, or cool during the summer, or fed, or hydrated, or cared for, or able to care for themselves?

These are the questions that have occupied me since I read, an then saw, the Soloist. They aren't new questions for me, but lately I seem to be unable to push the questions back into the background. There are too many Nathaniel Anthony Ayers' out there, there is too little compassion for them individually and as a group, and what with the economy skidding precariously back and forth between Recession and Depression, and two wars, and too many people without access to health care and a polarized society where people seem to talk only to other people who look at life exactly the same way they do, and with newspapers going away (Who knows if a Steve Lopez will even be able to bring his column to the attention of thousands of Angelinos in a year or two?), well it's pretty obvious that the men and women whose mental illnesses compel them to eschew shelter and treatment and the so-called benefits of a "normal life" are going to receive even less attention than they already do.

Has there been any improvement in the availability of mental health counseling or effective or affordable psychiatric treatment since 1970 when Mr. Ayers' ability to cope with the world as he knew it evaporated that would prevent a current student who is just barely hanging onto what we call "sanity" to cope or to get help or to survive? When so many people have even fewer resources than were available to us during the 1970s, I am not convinced that a music student struggling against a looming mental breakdown, at Julliard today would find any more help than Nathaniel found nearly 40 years ago. And what about those people without that all-consuming passion that can offer at least a temporary respite from the demons of mental illness? Are they lost entirely? The homeless man who lived near the same just-outside-the-tunnel spot that Nathaniel often occupied, the man who was beaten nearly to death by thugs wielding baseball bats, and left for dead on the sidewalk outside the tunnel was featured a little more prominently in the book than in the movie. After the ER docs fixed him up and he recovered in the hospital and then for a few weeks in a rehab facility, did he escape the fate of homelessness? No. Once his funding was exhausted, the rehab hospital administrators had no choice but to return him to the very street where he had been living when the attack occurred, still coping-just barely-with some kind of mental illness and even shorter of short-term memory than he was before the attack.

A whole generation of young people in their 20s and 30s has never known a time without homelessness. The topic makes the local news now and then, when outside temperatures soar or plummet, or an unusually brutal crime grabs the headlines, or when families are planning holiday get-togethers and we guiltily remember that there are people living on the streets who won't be participating in holiday celebrations or sharing food and drink around groaning holiday tables. Some of us contribute to the combined-giving campaigns that are announced in e-mails that arrive every autumn, we might even show up at a shelter or a food pantry to deliver blankets or prepare or serve food. Just last week end, I filled a bag with packaged and canned food products and left it next to my suburban mailbox so my postman could deliver it to a local food pantry. I know crafty people who knit hats or gloves and others who tutor the children from families whose addresses correspond to the night-time shelters. We do what we can but we know it's not enough and the problems of people with mental illness who never get any treatment and people without homes who spend their days and nights on our streets remain, in plain sight but mostly out of mind.

Sometimes I run into people who make it a strict policy never to give change to panhandlers or street people, as they are so often labeled. These are the people with the blame the victim mentality who believe that helping people by adding to their accumulated change allows them to actually profit from their condition of homelessness. These are the people who whisper, "Get a job," under their breath-as if it would be easy for a person with a tenuous relationship to reality, and no address, no decent clothes, no regular access to laundry or even bathing facilities, and no resume to get a job! Am I any better, or more helpful than these people for whom I voice such contempt though simply because I offer a pocketful of change or a bag of canned food, or an annual contribution to charity?

I believe we have become too accustomed to finding people with mental illness, people totally out of touch with reality - or perhaps too much in touch with reality - living on our streets. I admire Steve Lopez for recognizing Nathaniel's musical genius and their mutual humanity, and writing about him in the "L. A. Times." His articles awakened a caring and a kindness and a degree of human connection in his readers, and that kindness and that caring and that generosity of spirit allowed Mr. Ayers to tap more tangibly into his passion for music which in turn, allowed him to come in off the violent and chaotic streets of L.A., and, although certainly still mentally ill, to live a safer, sometimes more rewarding life, inside a LAMP apartment, and later to spend his days at a LAMP music studio. Steve Lopez did a good thing, actually a whole series of good things, by connecting with Mr. Ayers in the first place, by writing about him, and continuing to write about him, by trying to find ways to help him, by appreciating him, befriending him, and allowing us to get to know them both. If we read the book and see the movie and fail to grasp the essential point that the hundreds of thousands of Nathaniel Ayers are each our responsibility, and getting them off the streets into safe environments that can meet their needs is a cause that deserves the fervor of revolution, then we will have missed an opportunity to make changes that should have occurred several decades ago.

According to the National Alliance on Mental Illness (NAMI) schizophrenia affects over two million American adults, which is about one percent of our total population aged 18 and older. Schizophrenia affects twice as many people as AIDS. There are treatments for schizophrenia, and they have varying degrees of success for people who are affected by the disability. Steve Lopez led me to believe, as a reader of his account of his experiences with Mr. Ayers, that his friendship was as effective a treatment for Nathaniel's schizophrenia as medications might have been, and in any event, Mr. Ayer's disastrous encounters with drugs and other psychopharmacological treatments had predisposed him long before to refuse any and all treatments that involved medications. Friendship may not be immediately in the cards for us or the homeless people we encounter as we walk down city streets, but kindness is one aspect of friendship that, it seems to me, is doable, for any one of us as we make our way through our lives.

Offering shelter and respite and health care and hope is a federal, a state, a local, and a personal responsibility in a country that claims to subscribe to the loftier truths of brother and sisterhood and justice for all. In the spirit of "Nothing about us without us," visit the web pages of the National Alliance on Mental Illness http://www.nami.org/ and learn about proposed legislative and in-community solutions. NAMI is an organization of people with mental illness and those who care about them. NAMI knows that there are no one size fits all treatment programs for the millions of individuals who struggle to conquer the illnesses that result in their disabilities. NAMI also believes that each one of us is responsible in some way for every other one of us, and NAMI believes that we can and must end homelessness.

On April 24, when the movie was released, Mike Fitzpatrick, NAMI's executive director, said, "The movie will help humanize people who live with schizophrenia and

are homeless. It will help people look beyond stereotypes and create better understanding of the challenge for treatment and recovery. The mental health care system is in crisis. After people exit theaters and leave popcorn behind, we want to translate new awareness into action."

A Google search led me to the blog of someone who identifies herself as Dr. Debbie http://drdeborahserani.blogspot.com/2009/04/schizophrenia-and-soloist.html. I found her suggestions for what to do when you encounter a person who is homeless sensible and sensitive:

1. Make eye contact. Smile.
2. Consider giving supplies, like a small plastic bag of toiletries, snacks, food or grocery coupons.
3. Donate your gently worn clothes to a local homeless facility.
4. Watch your words. Don't call people who are homeless "bums," "transients," or even "the homeless." They are still people first.

If you want to do more, consider volunteering.

Read Steve Lopez's book. It's available at your local library and bookstore, and I found it at the NLS digital download site as well as at BookShare.org. Watch the movie; it's playing everywhere right now and will certainly be available on DVD later for rent and purchase. There are interviews with Steve Lopez all over the internet, and you'll find two at http://wamu.org/programs/dr/09/03/16.php and http://www.cbsnews.com/sections/60minutes/main3415.shtml.

I found reviewers of the book and the movie describing both, over and over again, as "poignant and ultimately hopeful," and I agree. The hope won't be realized unless we act to replace homelessness and hopelessness with kindness and action, as the watchwords for our time.