Wednesday, January 10, 2007
Lee Smith on Her Son's Mental Illness
The following video in two parts is Lee Smith’s “The Working Man,” in which she talks about her son Josh, his illness and struggle, and how Caramore helped him find another identity, that of a “working man.”
The text from Lee Smith’s extended version of “The Working Man,” delivered at a legislative breakfast.
My talk this morning actually has a name---I’m calling it “Kindly Nervous,” my father’s euphemistic term for the immense anguish he suffered periodically from bipolar depression. Unfortunately for him, the fabled “up” phase was no fun ---no wild sprees, no elation---instead, he just worked harder than ever at his beloved Ben Franklin dimestore, where he did EVERYTHING, anyway. All my earliest memories are tied up with this dimestore, where I, too, “worked” from the time I could walk; my first job was “taking care of the dolls.” When Daddy’s mania increased to the point where he could no longer sleep, sometimes I accompanied him down to the store, sleeping on a pallet under his desk while he worked all night long, then going out with him in the chilly dawn to a greasy spoon for breakfast.
But these weeks of intense activity would inevitably be followed by a downward spiral. He’d speak less and less, stay in bed more and more, sometimes becoming virtually catatonic, unable to speak or get up at all----at which point my uncle Curt or my cousin Jack or some other family member would come and take him away to the hospital---sometimes the state mental hospital over in Marion, sometimes Duke (ALWAYS Duke, after I started living down here---but I’m getting ahead of myself).
I remember visiting him once at Duke, where I found him staring at a sheet of paper with something drawn on it.
“What’s that?” I asked.
He replied that his doctor had left paper and pencil for him to draw a picture of a man doing something he enjoyed.
I looked at the stick figure. The man’s hands hung straight down from his tiny hunched shoulders; his legs were straight parallel lines, up and down; his round head had no face, no features at all. None.
“So what’s he doing?” I asked.
“Nothing,” my father said.
In the fierce grip of severe depression, this popular, active, civic, public man---a great storyteller, a famous ”yellow-dog Democrat”---could not imagine doing ANYTHING…..not one thing in the entire world that he might enjoy.
The worst part was that he was always so horribly embarrassed and ashamed of this illness, never understanding that it WAS an illness, but regarding it rather as a weakness, a failure of character, which made him feel even worse.
I will never forget what a breakthrough it was for him when I gave him William Styron’s just-published book “Darkness Visible,” a memoir of his own depression, to read. My dad respected William Styron; he had read “The Confessions of Nat Turner,” he had heard Styron speak at a literary festival at my college. He read “Darkness Visible” in one sitting.
“I can’t believe it!” he said. “I can’t believe he would tell these things!”
Styron laid it on the line: ‘Depression afflicts millions directly, and millions more who are relatives or friends of victims….as assertively democratic as a Norman Rockwell poster, it strikes indiscriminately at all ages, races, creeds, and classes, though women are at considerably higher risk than men.”
And, “The pain of severe depression is quite unimaginable to those who have not suffered it, and it kills in many instances because its anguish can no longer be borne. The prevention of many suicides will continue to be hindered until there is a general awareness of the nature of this pain.” (William Styron, “Darkness Visible”)
Depression is even more prevalent today than it was in 1990, the year Styron wrote those lines. By the year 2020, Major Depressive Illness will be the leading cause of disability in the world for women and children. Suicide worldwide causes more deaths every year than homicide or war.
In fact, in the next 42 seconds, before I finish reading this page, someone in the United States will try to commit suicide. And about every 2 hours, a young person will succeed. Because the fact is that the majority of those 2,000 Americans who will attempt suicide today are adolescents and young adults.
Right now, 192,371 children and adolescents in North Carolina (10 %) have serious emotional disturbance, and only 34. 3 % of these receive treatment.
In the words of Mark Sullivan, Executive Director of the Mental Health Association of Orange County, “Without treatment, the consequences of mental illness for the individual and society are staggering: unnecessary disability, unemployment, substance abuse, homelessness, inappropriate incarceration, wasted lives. The economic cost of untreated mental illness in the United States is more than 100 billion dollars each year. “ These statistics are true despite the fact that “the best treatments for serious mental illnesses today are highly effective; between 70 and 90% of individuals have significant reduction of symptoms and improved quality of life with a combination of pharmacological and psychosocial treatments and supports.”
This was certainly true for my son Joshua Seay, who was struck at 17 by the devastating brain disorder of schizophrenia. And though my beloved Josh died three years ago, I am not here today to mourn him, but to celebrate his remarkable life. The exact cause of his death was an “acute myocardiopathy,” the collapse of an enlarged heart brought about in part, I believe, by all the weight he had gained while taking the antipsychotic drug clozapine. He was 34, he had been sick for half his life, doing daily heroic battle with this disease which first hit him in the summer between his junior and senior years in high school, while he was in a summer program for gifted teen musicians at the Berklee College of Music in Boston. Back in Chapel Hill, we’d started getting wilder and wilder phone calls from him about “birds flying too close to the sun,” reports of all-night piano jams, strange encounters in the park, and no sleep---no sleep, ever. He flew home in a straight jacket.
Then the hospitalizations began. First a lengthy stay at Holly Hill in Raleigh, followed by several heart-breaking tries at normalcy, life back home with us and stints at local schools---then off to longterm care at Highland Hospital in Asheville where he lived for four years, sometimes in the hospital itself, sometimes in a group home on the grounds, sometimes in an apartment with participation in their day program. ( I should add that Highland Hospital is closed now, along with Holly Hill, along with most private mental hospitals). For a while he was better, then not. Then REALLY not. We brought him back home to UNC Neurosciences Hospital, where several doctors told us he was so ill that he would never EVER live outside a hospital again, and referred him to Dorothea Dix. But then Josh’s luck changed. Once he got to Dix, they put him into their test program for the brand new “wonder drug” clozapine, which had just been legalized in this country (1992).
And up on that beautiful, windy hill, overlooking the city of Raleigh, Josh started getting truly better for the first time. Suddenly he could participate in a real conversation; he could make a joke. He asked me one time whether or not I believed in Jesus, and I said, “Well, yes. But what do you think? Do you believe in Jesus?” Josh thought for a while, then said, “Well, I don’t know. Every time I’m in the hospital, there are at least three people in there who think they’re Jesus. So sometimes I think, well, maybe Jesus wasn’t Jesus at all---maybe he was just the first schizophrenic.”
It was literally a miracle.
The doctors said he could be released soon, but to our surprise, Josh didn’t want to go. He liked the hospital, where he played jazz every afternoon on an old upright piano they had brought into the dayroom for him. Whenever we attempted to take him off the hospital grounds for dinner at a restaurant or maybe a short visit back to Chapel hill, he’d often say, “Let’s go back now” when we were only halfway to our destination.
It was a shock for us to realize that Josh had come to identify himself AS A PATIENT, pure and simple. And he wanted to remain a patient forever. The last thing he wanted to do was come home. But the folks at Dorothea Dix were determined to kick him out, and fast. So in desperation we met with the social workers and looked at whatever programs were then available in the community. We looked at Club Nova, the Chapel Hill clubhouse which was just getting started, and at Caramore, and at several day treatment programs.
And then suddenly my father, who was visiting us at the time, weighed in heavily on the subject. “Listen,” he said, “He’s got to be trained for something. A man’s got to have a job.” Of course this would be the advice from my dad, who would go on to run his dimestore until the age of 85, when he died in the middle of his going-out-of-business sale. “A man’s got to have a job,” he said.
So we picked Caramore because it offered vocational rehabilitation training, as well as housing----though at the time, I frankly never thought it would be possible for Josh to ever hold any sort of job again. But to our relief and surprise, Caramore accepted him, and Josh moved into one of their group homes in Chapel Hill, where he started out working with the lawn and landscaping crew, then their housecleaning business.
At first it was a complete disaster. Josh kept running away from the job, “getting lost” somehow between the group home and the job site…other times he’d just walk off a job and hop a bus down to Franklin Street. Once he hitch-hiked back to our house, where he hid in the basement until the whole lawn crew came rushing over in hot pursuit, pounding at the door. I didn’t even know Josh was down there! They came in, dragged him out, put him in the truck, and took him back to work.
After about a month, some significant changes began to occur.
Maybe it was the early wakeup hour, or the rigorous, physically demanding schedule---but Josh began to seem lots more alert, lots more animated, even lots more co-ordinated. He began to make friends at the group home, clients and staff alike---friends who would actually last for the rest of his life. We realized how ISOLATING his illness had been, how good it was for Josh to be in this group situation.
Before long, Caramore placed him in a job at a local dry cleaners. At first he was terrified, especially of working the cash register and the computer, so a vocational rehabilitation “job coach” came in to work with him for a while, until he was comfortable with all his tasks. Things settled down. Josh made some friends on the job; he made some money. He moved into a supervised apartment with a roommate. And best of all, he even got a girlfriend!---also in the Caramore program.
It was about this time that Josh and I were walking along the street and ran into an old family friend who had not seen him for many years. She asked Josh where he was in school.
“Oh, I’m not in school,” he said confidently. “I’m a working man now.”
“Of course,” I thought. The working man. My father’s words rang in my head.
His other friends and roommates similarly identified themselves by their jobs. His best friend said, “I work in the meat department at Weaver Street.” His girlfriend said, “I work at the nursing home.” Their jobs had given them all an identity---something their illnesses had taken away.
Work is a normalizing experience—as is living independently, another experience which illness can deny us. This is why affordable supportive housing, group homes, and rehabilitative clubhouses for adults are crucial in our support of the mentally ill. Eventually Josh was able to move out of supervised housing and into his own apartment. He learned to manage his own medication entirely, and get to his own doctor appointments on time.
For the last seven years of his life, Josh worked at Akai Hana Restaurant in Carrboro. Of course he had to have a few “tune-ups,” as he called them, from time
time, over at UNC’s Neurosciences Hospital. The difficult transition from hospital back to daily life was facilitated by the hospital’s STEP Clinic program, which allows local emerging patients to participate in hospital programs during the day but return to their own homes and routines for the evening.
Josh also played piano at Akai Hana every Saturday night, unique sets which mixed blues and jazz along with his original music. He assembled a tape of his own compositions which he entitled “Five Not So Easy Pieces,” a title which now strikes me a symbolic of his whole life., which was NOT easy, as he bravely dealt the hand which fate had given him. Yet his life was full and rich and valid and successful and, yes, HEROIC---as heroic as anybody’s on this earth.
I credit this to the resources available in this community----medical care, medication, hospital and day hospital programs, vocational training, group homes and clubhouses, the family support offered to us through the North Carolina Alliance for the Mentally Ill.
Yet the promise of community health remains unfulfilled. Many people living right now with the most serious and persistent mental illnesses are not being provided with the treatments they need. Treatment works if you can get it, but many just cannot get it. In the United States today, there are 8 million people with “serious and persistent” mental illness---3 million of them presently untreated. Our family was lucky, but we were also persistent. And we had insurance, a key factor. And we were educated enough to figure out how to navigate the system, which is NOT SO EASY—to use Josh’s phrase. In fact, it is almost impossible for a seriously ill person to do so. But listen to me: my “kindly nervous” family is far from unique. One family in five is affected by serious mental illness. ONE IN FIVE. That’s a lot. Do something for us.
Posted by Caramore at 10:48 AM