Back home in Seattle, a diagnosis of rheumatoid arthritis was confirmed in August, 1974. Eleven months had passed since the first symptoms of the disease. At the time, rheumatoid arthritis was described as the nation’s most prevalent, crippling illness. It is an auto-immune disorder. The immune system, for some reason still unknown to western medicine, attacks the body. There was and is no known cure. In spite of the gravity of both the diagnosis and the prognosis, I was relieved. The pain so severe that death became a friend was real. It was not a product of my imagination. There was even a name for it! Once understood, I felt, in no small measure, that I was finally on the road to finding some relief, if not a “cure”.
In the weeks and months following the diagnosis, many treatments were offered and abandoned when expected results were not achieved. Sometimes, the side effects became too severe to tolerate. Throughout most of this period, over-the- counter pain killers, particularly aspirin, provided some relief. I was not working, so frequent soaks in hot water were possible at home. Remembering my experience of the value of exercise when on vacation, I joined a health club. I went for regular workouts and spent a good deal of my afternoons in the sauna, steamroom, hot tub and heated swimming pool. Because of my former position at the University of Washington Joint Hospitals, I had access to all current state of the art and experimental therapies. I enrolled in several clinical trials for both pharmaceuticals and advances in rehabilitation medicine.
In the early 1970s, steroids and the early COX (cyclooxygenase enzyme) inhibitors, a class of non-steroidal anti-inflammatory drugs (NSAIDS), were being prescribed as research continued. Common drugs in the COX-1 category are aspirin, ibuprofen and naprocyn. These drugs in the quantities prescribed for rheumatoid arthritis have harsh “side” effects, the pharmaceutical industry’s euphemistic description of undesirable outcomes. The patient who is suffering these effects will tell you they are immediate, visceral and include severe depression that can lead to suicidal ideation. They are not on the side. (Several of the later COX-2 inhibitors, Bextra, Celebrex and Vioxx, were taken off the market fairly recently because of dangerous and potentially fatal effects. This class of drugs made Americans aware of the dangers of some common drugs. As a nation, we finally questioned the wisdom of appointing pharmaceutical industry executives to the Food and Drug Administration, the agency that sets safety standards for drugs and ultimately approves them for market.)
I experienced many harmful effects of these medications. My doctors encouraged me to persevere and focus on their pain-relieving effects. My doctors were, and they and many others continue to be, cavalier in their in their attitudes about the use of drugs and the “side” effects that their patient’s endure. From their perspective, one largely influenced by research literature provided by drug companies I’m sure, the benefit/risk ratio justifies continuing use of the drugs. The patient simply has to be content and do the best he can to tolerate them. Otherwise, he is not a good patient and not deserving of a doctor’s time. Following this line of reasoning, several other drugs whose effects further disturbed my equilibrium were prescribed to mitigate my discomfort. Wanting to be a good patient, I did as I was told. My bias toward western medicine as the standard for care in the 20th Century and little or no awareness of traditional, i.e.“alternative”, medicine informed my choices during this early period of treatment. This decision making process opened a new window of understanding. I soon understood what it means to be caught in a vicious cycle, a cycle of increasing symptomatology both primary and secondary.
Finally, I had some very good effect in one of the trials. My pain was not gone. I had not been “cured”. My relationship to the pain was different. I felt a distance between me and the body and mind that I inhabit. I was aware of the body and mind, but I was not identified with either. I was not at all disturbed by this event. It recalled my experience on the beach in Hawaii, not to mention earlier experiences with LSD. Cool! A new window on reality had opened once again. I eagerly reported my relief to the chief investigator of the trial who suddenly seemed disturbed. Not long after, the drug was withdrawn from trial. Not only was it no longer available, I was instructed to return the remainder of my supply. I later learned that one subject in the study had taken to walking on the ceiling and another wanted to know the date of her death. Finally, a “side” effect beneficial to me, though obviously not others, and the drug was suddenly withdrawn.
By this time, I was well on my way to a gastric ulcer, and possibly colitis. These symptoms were iatrogenic, i.e. caused by prescription drug therapies. There seemed no end in sight. The experimental drug that produced the greatest benefit without harmful effect had been withdrawn. After taking that drug, however, I actually began to feel much better. Importantly, I remembered the symptomatic relief after my similar experience on the beach in Hawaii. One event was drug induced, the other by inquiring into the nature of death. What they had in common was an altered relationship with my body. I thought there must something to this out-of-body state worth investigating. I remembered the message, “yoga”.
This period of treatment was a very “dark” time for me. After troubled nights with little sound sleep, I would hobble around my apartment with whatever supportive device was necessary to get dressed, eat and get my day started. Once that was accomplished, I would get myself to the head of the first long set of stairs. My apartment was on the second floor of an elegant turn of the century apartment building and there was a long stair-case of twelve stairs from the sidewalk to the building entrance. Poised at the head of the stairs, I sat down and lowered myself one step at a time to street level. My first priority was to get to the market four blocks away. Because my hands were painfully deformed, I made several trips carrying a few items at a time. On the days my knees would allow me to operate my car with a standard transmission, I would drive to Seattle’s Volunteer Park or the waterfront for a walk. Then, I’d be off to the gym. Days that I couldn’t drive, I’d go directly to the gym on public transit.
A frequent treat would be to stop at the Greek restaurant a few blocks from home. The family that owned the restaurant was very kind to me, frequently comping me a meal, or they would write a check with prices much lower than those on the menu. Due to my illness and the drug induced irritation in my gut, I’d lost a lot of weight. They would sit and encourage me to eat more.They piled my plate high with food and were sure to include me in sampling any dish they were presenting for the first time. Special treats would pour out of the kitchen—items that were not on the menu, prepared for their family and guests. They would carry me to the dance floor and insist that I join the dancing that was a nightly event. They became my surrogate family. I will never forget the kindness of my Greek family and many others who lended support when I needed it most.
As the summer of 1975 was coming to an end, I began to feel that I’d turned a corner. My attitude toward illness was changing, and several experiences were leading me to investigate, if not accept, the wisdom of “alternative” therapies. In celebration, I got my bicycle out of storage, adjusted the seat and the pedals to make sure there was no stress on my joints and off I went on the road to recovery.