Almost every child goes through stages of being frightened by imaginary ghosts and monsters. So did Carol North, now 33, but her fears never went away. They multiplied to include voices and visions that hounded her 24 hours a day and eventually drove her to several suicide attempts. Finally, in her sophomore year at a Midwestern university, North was diagnosed as a schizophrenic. (She declines to name the school to protect the privacy of individuals there.) In her recently published book Welcome, Silence, North recalled her battle with the treacherous illness.
According to Dr. Sam Keith, chief of schizophrenia research at the National Institute of Mental Health, schizophrenics have a problem “differentiating between what is internal and external. Somewhere the filtering system that sorts out stimuli has broken down.” He says there are currently two million diagnosed schizophrenics in the U.S. With treatment, about 30 percent of them “will fully recover,” he adds.
North first was treated conventionally with antipsychotic drugs. Then, in 1977, hemodialysis, used for kidney disease, was touted by two physicians as a possible cure for schizophrenia. (The dialysis was thought to filter out toxins in the blood that might contribute to the disease.) North’s psychiatrist tried the experimental technique as a last resort. The result was dramatic: North’s symptoms disappeared.
After her recovery, North, the daughter of a retired chemical engineer and a housewife, tenaciously pursued her dream of becoming a physician. Now a psychiatrist at Washington University’s School of Medicine in St. Louis, she believes it was the dialysis that cured her. She is also aware that its effectiveness in others has proved negligible. Because of that, as well as the risks of dialysis, North has not suggested it as a treatment for her many schizophrenic patients. North spoke with Chicago Bureau Chief Giovanna Breu about her difficult odyssey.
I was 6 when my symptoms first appeared. A fire broke out in our house, and my mother yelled for us to get out. From the backyard I watched these brilliant orange flames. It was the scariest thing I’d ever seen. After that, I was consumed by the fear that the house was on fire again. I began seeing ghosts and Popeye-like arms suspended in air. I was convinced that the flowers on my pillowcase were bugs.
I realize now that I had been hearing voices all along, but I thought everybody heard them. It sounded as if 10 radios were going at once. My brothers and sister called me a baby every time I was scared. My parents thought only that I had a big imagination and would outgrow my fears. As time went on, however, they became more worried. When I was still 6, my mother took me to our physician. He took out a calendar and said, “Every day you’re not scared we’ll put a gold star on it, and when you have 30 stars you’ll get a bicycle.” I really wanted that bike, so I started hiding my fears.
As I grew older I thought the delusions were sent from other worlds to guide me and that my mother was reading my mind. I’d try to keep away from her or stare at her to make her stop. As the voices and the hallucinations increased, I’d talk about what was happening to me, and my friends would look at me in bewilderment. By my senior year of high school, things became so bad I attempted to cut my wrist with a razor. Life was so scary, and I thought death would just take me to another realm. I stopped when it began to hurt, though; I hadn’t expected pain. Despite my difficulties I excelled in school. I have what I call a marathon personality. I’m driven. I set a goal and go after it. I graduated ninth in my high school class of 500 and was very happy to leave for college. I felt as if I was free from my mother’s mind reading and was no longer a baby.
The chaos grew worse. I began to see squiggly colored lines in response to real sounds like a door slamming. My boyfriend finally took me to the university’s psychiatric clinic. A third-year medical student there gave me some Valium. But it put me to sleep, so I stopped taking it after two days. During my second semester, I got worse. All I could do was lie motionless in bed. If I moved my hand, I’d see 12 hands trailing off after it. My unresponsiveness scared my friend so much that one night he picked me up off the bed and carried me to the university’s hospital. The psychiatrist there later told him that I was a catatonic schizophrenic and would never get well.
I became very fearful in the hospital. The doctors kept trying different medications, but all of them caused side effects such as unrelenting restlessness. Next they tried behavior modification, as my childhood doctor had with the gold stars. Once again I hid my symptoms in order to become socially acceptable. I still felt terrible, but I appeared better. Finally, after four months, they let me go home. Looking back on it now, I think my doctors were trying to help me, but I was very ill, and my primary doctor was very young, and we didn’t communicate well.
Before I returned to school that fall, I gave up my medication. It had made me too sleepy and unable to concentrate. Then one day the helicopters started. They were imaginary, but I could hear the chopping sounds. I was hospitalized again just for a few days. That became my pattern. I learned to calm the chaos long enough to get me through the next exam. When the confusion became too great, I’d go back to the hospital.
In my junior year I switched my major to premed. My hospitalizations became less frequent, and eventually I was accepted at my university’s medical school. Toward the end of my first semester at med school, my illness began to interfere significantly with my life again. I was close to failing a couple of courses. Getting through med school was my dream, and I was about to lose it. I didn’t totally collapse until the second semester. I had a pair of jeans I didn’t take off for a couple of months. I drew symbols of my thoughts in pen on them. My appearance and behavior alarmed one of my professors. He sent me to a health counselor who recommended a psychiatrist, whom I’ve called Dr. Hemingway in my book. He was as eager for me to achieve my goals as I was. He put me back on medication, but the dose allowed me to continue my studies without disabling side effects.
In my sophomore year I broke up with a guy I had been dating for almost a year. I felt devastated, and I became even more socially isolated. I was suicidal. I ended up back in the psychiatric ward several times. Eventually I had to take a year’s leave of absence from school. My parents had been in constant touch with Dr. Hemingway. One night they saw a television program about a new dialysis treatment for schizophrenics. They wanted Dr. Hemingway to try it immediately, but he was unsure because it was scientifically untested. He finally agreed to apply for a federal grant to test the technique. I was his first subject.
In all, I had 16 weeks of treatment. I didn’t feel much different at first, but after the second treatment I noticed that the voices were a lot softer. I woke up the next morning, and it was as if all the radios in my head all those years were turned off. Dr. Hemingway called, and I said, “Hey, something’s different. The silence is deafening.” I never heard the voices again. Both Dr. Hemingway and I think it was the dialysis that cured me. If it wasn’t, it was a big coincidence, and I was incredibly lucky. As a psychiatrist I theorize that there are many subgroups of schizophrenia, and I may be in a rare subgroup that is responsive to dialysis.
A year and a half later, I was accepted at Washington University medical school in St. Louis. I had told them everything about myself. They seemed impressed by my motivation, and they thought I deserved a chance. I graduated in 1983 with an award for research and one for general excellence. Although I thought about avoiding psychiatry as a specialty, I felt that the patients needed me. I have a sensitivity to certain experiences that most psychiatrists lack. I like being a doctor. Now I’m somebody to respect.