Schizophrenia

It was one of those brilliant summer days with perfectly blue skies, and I was sitting in the psychiatric wing of a Long Island, New York, hospital with my then-18-year-old son Kamal (at his request, his name has been changed). We were waiting to be called by a social worker who would evaluate him for possible admittance to the hospital. Words can't describe the loneliness and heartache that welled up inside me as I stared at the other people within those institutional-gray walls. Tears began to roll down my face, but they were nothing compared with the flood that would be unleashed when I returned home later that night.

Growing anxious, Kamal began to pace. He traveled the length of the corridor, back and forth, desperately trying to find an exit that would take him back out into the warm, bright sun. Discovering that all doors were locked, he veered into an empty office with a small window. But the window was too high up for him to reach, so he headed back to the large open waiting area. The problem was that my six-foot-tall son was gripping and pulling me along with him. As his hold on first one, then both, of my wrists be came tighter, the medical staff and guards in the waiting area grew concerned. My own mind was becoming dazed and disoriented when suddenly I heard a whispered voice close by ask me to remove the ornamental chopsticks tucked into the back of my hair. As I moved to comply, pulling one hand free of Kamal's grasp, I questioned my loyalty. I knew my child needed help, but was I doing the right thing? I watched helplessly as members of the medical and security staff pulled on latex gloves and arranged themselves in cautious and deliberate positions. One doctor held a hypodermic syringe and another a white straitjacket as the guards echoed my now-heightened plea for my son to set me free. Kamal, still agitated, didn't seem to realize what was happening. A moment later, the doctors and guards tackled him and jabbed the needle into his arm. My son hollered. I can only imagine the horror and confusion that assaulted his mind as he crumpled over. And as his limp body fell. Kamal instinctively bit down on my hand and flung his leg toward the very abdomen that had propelled him out into this world almost two decades earlier. During the scuffle, I lost a sandal, my glasses went flying and, along with them, a gigantic piece of my spirit hit the bard, bare floor.

All of this landed me in the emergency room for a tetanus shot and stitches in my throbbing, swollen and discolored hand. And it landed Kamal, for the second time in his young life, in a psychiatric infirmary with patients who were mentally ill.

EARLY PROMISE

The previous year, when he was 17, Kamal had been diagnosed with schizophrenia, a severe and disabling brain disease that disrupts normal thought, speech and behavior. The disorder makes it difficult for a person to tell the difference between real and unreal experiences, to think logically, to have appropriate emotional responses to others, and to behave in socially acceptable ways. The illness affects more than 2 million Americans and usually strikes its victims in their late teens or early twenties. Some mental-health professionals believe schizophrenia may be triggered by environmental stresses that interact with genetic factors and biochemical imbalances.

Most of us comfort ourselves that such mental disorders are rare and happen to other people. In fact, according to the National Institute of Mental Health, about one in five adults suffer from some form of mental disorder in any given year. Even so, it never occurred to me that my son would be among them. There wasn't much in Kamal's childhood to hint that he would later exhibit signs of a devastating mental illness. As a boy he'd shown all the promise a mother could wish for. From the beginning, he was a star: smart, talented, good-looking, self-motivated, and physically and mentally fit. At 6 he joined a track team in our Queens, New York, neighborhood. At 7 he began karate lessons. He soon advanced to junior assistant to his sensei, and at 10 he added Little League baseball to his routine.

In elementary school, he had won storytelling contests and gone on to compete at the district level. He loved to recite humorous African fables about Anansi the Spider, and when he graduated from sixth grade, he was the class valedictorian. I remember his perfect speech and the perfectly blended strip of kente cloth his dad had draped around his small but sturdy shoulders. Who knew that the weight of a perplexing mental disorder would soon come crashing down on them?

In retrospect, I can see that I missed what was surely an early sign. In 1996, when Kamal was 16 and in tenth grade, he was one of five winners--out of 12,000 entries--of a prestigious art competition. My son's winning oil-and-acrylic self-portrait, composed of deep blues, grays, blacks and splashes of chartreuse, is the haunting image of a boy who is clearly depressed. In his portrait, he wears a hooded sweatshirt and stares out from its shadow with penetrating dark-brown eyes set in a long, solemn face. It is clear to me now that this painting expressed my son's desire to shield himself from an increasingly confusing internal and external world.

A THOUGHT ROAD

The first symptoms of schizophrenia are often missed or misinterpreted, says Harvard psychiatrist Alvin Poussaint, M.D. Some individuals may show signs of anxiety or depression. They may seem tense or agitated and lacking in social skills. Many stop caring about their appearance, pick fights with their family, and become isolated from their friends. They lose interest in activities they once enjoyed, and their schoolwork suffers as concentration becomes more difficult.

These symptoms can be particularly problematic for Black boys, especially those whose families are already fractured by poverty or neglect. It doesn't help that our boys are often viewed as angry and threatening by society at large, or that their antisocial behaviors are more likely to be seen as criminal than as a cry for help. In Lag My Burden Down (Beacon Press), which Poussaint coauthored with Amy Alexander, the psychiatrist cites gang involvement, petty crime and drug abuse as examples of the ways in which boys struggling with mental illness may choose to act out.

But instead of dealing with the root causes of such behavior in Black youths, we demonize them and lock them up, says Carl C. Bell, M.D., a clinical professor of psychiatry and public health at the University of Illinois at Chicago and head of the Community Mental Health Council in Chicago. Bell believes that most Black males who need mental-health assistance are at higher risk of being misdiagnosed. And Blacks who are identified as having a mental illness often receive inferior treatment. For African-American boys with schizophrenia, the picture can be bleak. "Black males who develop schizophrenia have a horrible time because, for the most part, the systems of care in their communities are virtually nonexistent," says Bell. "There is very little available to them in terms of supported housing, supported employment, day-treatment programs and psychosocial rehabilitation--programs that treat schizophrenia and substance abuse, along with offering some family psychoeducation." Bell points out that these types of services are seldom found in Black communities because most tend to be poor. "And," he adds, "there's still a huge force called racism destabilizing our communities." This racial and economic divide typically affects not just the level of services we receive, but also the level of research and official concern about providing adequate health care in our communities. "The result is that the mentally ill among us don't really get the support they need," Bell says.

The effects of this gap in mental-health services are far-reaching. Because Black males with mental disorders are at such a high risk of being undiagnosed, misdiagnosed or improperly treated, they may turn to drugs and alcohol as a way of medicating themselves. "Seventy percent of all people who are mentally ill are also using substances," Bell says. "And more than 70 percent of people who commit suicide have a history of mental illness."

The hard and perhaps unanswerable question is: Do disproportionate numbers of Black boys turn to substance abuse, and even crime, because they suffer from undiagnosed mental illness? Or are they, like so many others, expressing rage and a cocktail of other emotions at the poverty and racism that too often confront them? Compounding the difficulty of answering this question is the fact that many Black males have absorbed the message that they'll be perceived as weak if they seek psychiatric help.

KAMAL'S SLOW UNRAVELING

My son began to experiment with marijuana while in tenth grade. My ex-husband and I found little plastic bags of the herb in his room, and he began to come home late, with his eyes red and glassy. I've agonized over my own questions: Was Kamal's mental illness brought on by a bad joint, one laced with some harmful hallucinative chemical? Or was he already developing mental illness and fulfilling the urge to self-medicate?

Odd behaviors began to appear. One day in church, Kamal raised his arms high, leaned back into a full stretch and loudly yawned. Another time, when his dad was chastising him, Kamal slowly backed into a corner and crouched down low against the wall, like a caged animal. His dad and I were both stunned by his reaction. Not knowing any better, we found it distasteful.

On another occasion, when his dad drove him to get his broken eyeglasses replaced, he refused to get out of the car. For reasons we could never fathom, Kamal frequently seemed agitated or upset. It became impossible to get him to cooperate at home with his father, sister, brother or me. And he was always beating up on his younger brother, as if his very presence irritated him. How much of his behavior can be explained by the fact that he's a rebellious teenager? I'd ask myself. But why was he wearing two pairs of pants and warm jackets in July?

Though he no longer bothered to dry his laundry--his clothes would stay wet in large black plastic garbage bags in his room--and much of his thinking seemed disordered, I still clung to the hope that this was just a particularly difficult phase of his adolescence. A pivotal moment, when I could no longer delude myself about my child's disturbed behavior, came the day my daughter, Kamal's older sister, gave her baby a first-birthday party. Kamal left his sister's apartment in the middle of the party, then returned some time later, rolling off the elevator in a rusty old wheelchair that he'd found discarded among the building's trash. He was wearing lopsided eyeglasses and a rubber band around his head, and he looked peculiar. Though I was acutely embarrassed, I was glad we were among family and friends. Little did I know that by then it was common knowledge to most of our circle that "something" had happened to Kamal. He was not the same as before. Even his walk was different--quick, awkward and unsteady.

I later learned that an altered gait and disheveled appearance are common early manifestations of illness. It's as if an individual who is suffering with schizophrenia deliberately adopts physical characteristics that read: "There's something wrong with me. I'm not normal. I'm not healthy." It's not just the schizophrenic's actions that attract attention, but rather it's his or her total look. And when antipsychotic medications have been given as treatment, other physical markers--like weight gain--also typically develop.

In those early days, I kept asking Kamal's dad if he thought something was wrong with our son. He confessed that he thought Kamal was in the grip of some psychosis. His suspicions became stronger one evening as Kamal methodically slashed his mattress, trying to find a coin he thought had gotten buried inside.

The turning point came when we had to call the cops one night. We had made an appointment for Kamal to go for counseling the next day, and we didn't want him to go out that night for fear that he would get high. A struggle ensued as his dad tried to keep him from leaving the apartment. We had already taken Kamal to therapists, so we explained to the police that we were trying to figure out the nature of his problems. The police, assessing this as a violent outburst, called an ambulance to take him to the nearest psychiatric hospital. They told him he would see somebody "just to talk."

The next day, during what would be Kamal's first stay in a hospital psych ward, I watched as he experienced severe side effects from antipsychotic medications that he'd been given. I wish I could erase the horrifying scene from my mind, that I had never witnessed my son with his aching head wrapped in a white towel, his eyes deadened and mouth drooling as he walked barefoot and zombielike into the dismal visitors' area.

LIFELONG JOURNEY

Kamal was released 48 hours later. After that, he was hospitalized for treatment off and on for the next two and a half years. Doctors told us that Kamal had what is described as the negative-symptoms form of schizophrenia. Unlike patients with positive symptoms, which include delusions, hallucinations, and disorganized thinking and behavior, patients with negative symptoms have a diminished ability to experience or show emotion. Lacking energy, spontaneity, motivation and initiative, they withdraw socially, seem unable to feel pleasure, and have difficulty concentrating on even the most mundane tasks. But the right medication can help.

Kamal is 25 years old now. He lives in an institutionalized group home and has a part-time job as a messenger. If he takes proper doses of his meds and follows the home's guidelines, he can come and go as he pleases. Though we've come a long way since his first hospitalization, I still sometimes ask myself whether my child was diagnosed correctly. For a long time I could not accept that my son had this illness--its progress was so cunning, and its symptoms so often resembled other mental or emotional conditions.

I've since learned that it's common for parents and other family members to be in denial. As a mother of a child with mental illness, I have been forced to let go of so much--dreams and visions of a future that will never be the way I imagined it would be during my son's bright, untroubled childhood. I could ask, "Why me? Why my son?" And sometimes I do ask, especially when other mothers share the good fortunes of their gifted offspring. (Kamal's closest childhood friend graduated from Yale and is about to finish law school.) But what good does it do to ask such questions? It's much more important for me to support Kamal in getting the best treatment possible for his disease.

These days there are community-based options for people with schizophrenia and other forms of mental illness, organizations that provide education and ongoing broad-based support. One such model is the clubhouse day program. This approach has emerged as one of the most effective means of psychiatric treatment and rehabilitation, in part because it provides "club members" with educational opportunities, housing options and various levels of in-house or specially selected jobs. "The clubhouse model works because it gives the clients their dignity," says Terra Thomas, Ph.D., who runs the Human Resources Development Institute, a comprehensive behavioral health organization headquartered in Chicago. A hallmark of the clubhouse approach is its extremely supportive network, which helps members make friends, gain self-confidence and build the skills they will need to thrive. As Carl Bell explains: "Having a social fabric around you, a strong family, a place to go, a place where you belong; living in a community that looks out for you; having something to do with your leisure time, a purpose for your life; and getting good food, good sleep and good everything is a whole lot better than not having them." In other words, a strong support system will always yield a better outcome.

Looking back, I don't know how I made it home from the emergency room after I left Kamal that night seven years ago. As I waited with my bandaged hand for the bus outside the hospital, darkness seemed to engulf me, and I thought bitterly that motherhood had taken on a whole new meaning. I can still remember entering my apartment building, my insides trembling. I got off the elevator, put my key into the lock, and once safely inside, began to shake and wail.

That night and in the years that followed, family members and sister-friends bolstered me with their love and support. And with a lot of persistence, I was able to get Kamal into Fountain House, the original model for the clubhouse approach, founded in 1948. Now, three times a week, he attends the clubhouse program, where he does computer-data-entry tasks and takes a writing course. In time he'll qualify to take courses for college credit.

Our relationship has also grown closer over the years. Today my firstborn son regularly visits, calls and holds fluid conversations. I know our struggles are not over, but I now understand that mental illness can be effectively managed. As another mother who walks in my shoes once told me, "It's a journey." I know she's right. Trying to get the right help for a loved one who is mentally ill is a lifetime process. That's why, with God's help and the continued prayers of family and friends, I try to balance the challenges so that, consistently and very deliberately, I can be there for the one who most needs my love and support. My son.

Marsha Boone Kelly is an author and an assistant editor of this magazine. She is currently at work on a screenplay about her son.

MENTAL-HEALTH RESOURCES

If you need assistance for a loved one who is mentally ill, you may find these organizations helpful:

* National Alliance for Research on Schizophrenia and Depression AARSAD) (800) 829-9289 or narsad.org

* National Alliance for the Mentally III (NAMI)), (800) 950-NAMI or nami.org

* National Mental Health Association (NMHA), (800) 969-NMHA or nmha.org

* National Institute of Mental Health (NMHA), (866) 615-NIMH (toll-free), (301) 443-4513 or nimh.nih.gov

* Black Psychiatrists of Greater New York and Associates, LLP (BPGNY). (212) 969-0417 or bpgny.com

* American Psychiatric Association, (888) 357-7924 or psych.org

* Fountain House (212) 582-0340 or fourtainhouse.org--M.B.K.

COPYRIGHT 2005 Essence Communications, Inc.
COPYRIGHT 2005 Gale Group