The neurologist, Dr. Nabil Aziz, took my complaints seriously but, upon examination, could not find anything neurologically wrong with me. Nevertheless, he ordered a ton of blood work. The anti-gliadin antibodies test came back positive: I have celiac sprue, an autoimmune disease that makes the gut intolerant of gluten protein. I eliminated wheat from my diet and mourned the loss of pizza. The problem was that my body had been fed on sugar and gluten for fifty-four years (except for the month I was on a feeding tube in the ICU) and now it was trying to teach itself how to live on vitamins, minerals and protein. I continued to take drugs and the drugs continued to make me sick.
My agony had become constant. “Life” was a continuous repetition of ambulances, IVs, Emergency Rooms, catheters, needles, tests, hospitalizations and drugs. Dr. Barbara Feuerstein over-prescribed medicine; it took three trips to the Emergency Room before I figured out what was wrong. I took a drug to treat fibromyalgia and was hospitalized for a gynecological procedure before I realized it was the drug. Dr. Sean Bain prescribed the wrong medicine and got angry when I went to the Emergency Room. I was repeatedly abused, misused and admitted to psychiatric care, where the abuse was escalated to unbearable proportions.
Physicians prescribing pharmaceuticals were again and again precipitating this horrible voyage. I would take the drugs as prescribed, and hours, days or weeks later, the ambulance would be sent and the hellacious journey would begin again.
On April 24, 2001, I called Dr. Ghaly and Dr. Cohen to have breakfast with me in the hospital. I told them that after prayerful consideration I had decided to put my life in God’s hands. If it was God’s will that I die then I was ready to meet God on God’s terms. If it was God’s will that I live then God would find a way to make it happen. There would be no more doctors or drugs. I was taking out the middleman. It was going to be between God and me. There would be no more physicians prescribing pharmaceuticals.
Dr. Ghaly’s alternative profession would have been the priesthood. Dr. Cohen was born of a Jewish mother and was traveling the Unitarian path to enlightenment. I told them that it was their job to affirm that, although I was depressed, I was of sound mind and had a right to make this decision. They so affirmed.
I thereafter refused medication. Within hours, unexpectedly and inexplicably, Dr. Ghaly was threatening to get a court order to make me take medicine. When I argued, he said that at home I could do what I wanted to do but in the hospital he was responsible.
I was refusing potassium. I had low potassium as a side effect to the HCTZ used to treat the nephrogenic diabetes insipidus. Low potassium can cause a fatal heart attack. I explained to Dr. Ghaly that I also had stopped taking the HCTZ, therefore the potassium level would be rising and I would not be at risk. He ordered an immediate potassium level and confirmed the truth of what I had said. He made no further effort to force me to take drugs.
I was discharged to home, and my passage to health and freedom began.
The passage away from pharmaceuticals was about as smooth as transiting a hurricane in a rowboat. I had not planned anything—I had simply run screaming from the suffering caused by drugs. Now the learning would have to begin.
I was practically incompetent to learn anything because my brain had been stewed by twenty-six years of taking antidepressants and other drugs every day. Thinking came slow and hard but the process was accompanied every step of the way by Paul Cohen. We had been meeting twice a week for about ten years, and we continued. Whereas we had always talked about my thoughts, feelings and behavior, we now talked about the physiological underpinning of my thoughts, feelings and behavior. Paul read voraciously and he continually provided information from the latest medical studies.
The sleep apnea was worse. The dental clinic no longer could make partial dentures for me. My skin was dry and cracked. My mouth was so dry that I would wake during the night because I was choking. My vaginal secretions also had dried up and I no longer was orgasmic. I wasn’t a woman; I was a thing. According to doctors interpreting lab work, I was post-menopausal. You do not go from pre-menopausal to post-menopausal in fourteen months—my body knew that. The doctors refused to acknowledge sickness when it was presented to them.
I was angry at everybody—abusively, violently angry—most particularly at the medical profession that had so ill-treated me. I wrote my last will and testament, and raged at my aides. One particularly bad night, when I was dehydrating and my glucose was falling, I left a message for Rev. Craig Schaub and went to bed, expecting to die that night. Craig called me back and we talked, even though he was not happy with my behavior. Craig often used the word “abide” and I came to understand that meant that when there is nothing else you can do, you can continue to walk the walk. You do not abandon a person; you accompany.
Craig walked with me through every bad thing that happened. He found me in hospitals, took me to emergency rooms and visited me at home. He abided well. Even if I was weak in the faith, I was strong in trust of Craig. He taught me to trust that faith ebbs and flows, and not to fret overmuch if my faith was at low tide. Contrary to popular religion, he would come to my bedside and let me yell at God, as I held God responsible for my suffering. (To be continued)