When I was 14 years old, on a Friday afternoon I went to Nelda Jane’s house for the weekend. She wanted to go horseback riding and swimming; I wanted to go to sleep or sit under a tree and read. On Sunday afternoon, when her mother took me home, she suggested that my mother check my temperature. It was sky high.
On Monday, Mom took me to the doctor, who said I had a strep infection and prescribed penicillin. The following Sunday, I spent the day curled up in my father’s big chair, dozing but not eating or drinking. My mother called the doctor, who said I was having a drug reaction and told her to stop the penicillin. Within a day or two I was fine, but that was my first drug reaction.
Today there are a lot of drugs on the market to which you can react. When this happened in 1960, there were far fewer drugs on the market. I went for years rarely taking drugs except for menstrual cramps; I had reactions to a couple of the painkillers. Another fourteen years passed, then, on the Saturday after Thanksgiving in 1974, my fiancé died. Bob Dobrow was a fighter pilot in the Marine Corps; his plane crashed and his parachute didn’t open. We had a funeral instead of a wedding.
A few months later, in my grief, I became terribly fatigued and unresponsive to stimuli so I went to a neurologist who diagnosed me with “endogenous” (i.e., indwelling) depression and prescribed antidepressants. Thereafter, various psychiatrists told me that my depression was caused by a chemical imbalance in the brain and I would need to take antidepressants for the rest of my life. I did take them every day for 26 years.
During that time, I did not complete my education, develop a career, continue to work, get married or have children. I did get hospitalized on inpatient psychiatry about fifty times, spent a total of about three years in hospitals, and attempted suicide about a dozen times: I was a “psychiatric patient.”
I also was badly damaged physically by the side effects of the antidepressants, which had caused multiple chronic illnesses including—in part or in whole—diabetes mellitus, diabetes insipidus, sleep apnea, pulmonary fibrosis, intestinal yeast infection, celiac disease, depression, morbid obesity, fibromyalgia, cataracts, left ventricular hypertrophy, right branch bundle block and a sexually transmitted disease, its name now forgotten. I slept in a hospital bed, breathed pressurized air at night, traveled in a power wheelchair and had home health aides all the time.
In 2001, I did the unthinkable: I stopped taking drugs. And I started getting better. The drugs had been killing me.
I developed a seven-point recovery plan that consisted of—
- Spiritual study and prayer
- Lots of sleep
- A healthy diet
- Creative expression, specifically writing
- Exercise, as tolerated
- Being in nature, particularly gardening
- Acting for the betterment of myself and others
And I went to every doctor to whom I was referred. I was sick and nobody knew why. Among other things, the symptomology suggested multiple sclerosis, lupus or scleroderma but the rheumatologists ruled out every autoimmune disease. You go to a rheumatologist when there are no immunologists in your area. In Syracuse, New York, where I live, the largest employer is the State University of New York (SUNY) Upstate Medical University and Hospital. They employ about 10,000 people but if you call Upstate and ask for immunology, they transfer you to the pathology lab. Johns Hopkins Division of Allergy and Immunology has eight physicians; Upstate has shut down its Allergy Clinic.
So there was no physician to inspect my immune system. However, some doctor did diagnose me with chronic fatigue syndrome. The doctors to whom I talked told me there was nothing to do about it, and all the research on the Internet said the same thing—it was 2002—so I just muddled along as best I could. I learned what made me feel better and what made me feel worse, and relied substantially on my psychiatrist, who was a kind person and whose wife had lupus. Dr. Nasri Ghaly literally lived with an autoimmune disease and understood the ups and down involved. He ordered the hospital bed, the home health aides, and the electric wheelchair.
I worked my seven-point plan, which included reading the Holy Bible cover-to-cover several times, then moving on to the pagan bible, the Holy Koran, the Bhagavad Gita, and a couple of Buddhist books by Thich Nhat Hanh. I was looking for the commonalities: what did the world’s great religions agree on? Ultimately, my creed evolved: There is one Lord above all. He calls us to humility before him; to care for one another; to tell the truth, and to work for justice. That fit pretty tidily with my civic sense, which was stated as “All people share the right and the responsibilities to make the decision that affect their lives together.”
Healing takes place during sleep, so I worked long and hard to get restorative sleep. Known to the British but concealed from people living under the Federal Drug Administration, Ativan should never be taken with a respiratory disorder. I had sleep apnea and pulmonary fibrosis, nevertheless, was prescribed Ativan for years. I was put on a CPAP (Continuous Positive Air Pressure) machine, and then a BiPAP (Bi-level Positive Air Pressure) machine. Both left me in constant respiratory crisis. I went to half the pulmonologists in the area, and all of the sleep laboratories. Finally—after I threatened to file a complaint against his license—a pulmonary physician put me on an auto BiPAP. Instead of being a fixed-state machine which the physician controls, it has a computer chip that re-sets with every breath the user takes. It has a smartcard that revealed that my sleep apnea was unstable: in a single night, I might draw a pressure from 7 to 21. It took a decade of suffering before the medical industry finally got it right; I haven’t been back to a sleep lab in about six years. I finally succeeded in getting restorative sleep.