If I took the Ativan then I did not breath while I slept; if I did not take the Ativan then I would spend half the following day sobbing in mental agony. Dr. Ghaly did acupuncture, which would give me a few hours relief. As I ricocheted back and forth between Ativan and no-Ativan, I began to suspect that it was drug addiction. I was going through cold turkey drug withdrawal and the doctors were saying it was in my head.
Paul Cohen believed me, grabbed a sheet of paper and wrote out a schedule for withdrawing from the Ativan, roughly a quarter tab every other day.
Sean Bain, the primary care doctor, told me either I had another sleep disorder or it was emotional. I went to another sleep doctor who, without making eye contact, told me that I was having anxiety attacks and I must take the Ativan. I told him I thought I was going through drug withdrawal; he told me that if I wouldn’t take Ativan then I must take Klonopin, a longer-acting benzodiazipine. I went to Dr. Ghaly and he exploded: “Is not anxiety! You do not have anxiety attacks!” In the world of medicine, every doctor thinks he is fit to diagnosis psychiatric illnesses without referent or referral to the physician in the specialty.
Life without Ativan continued unchanged during the day but was radically different at night. Since I primarily had taken Ativan for insomnia, I primarily had a nighttime addiction. My sleep cycle, already bad because of the kidney damage and the sleep apnea, was now irrevocably busted. I finally read the PDR (Physicians Desk Reference) and discovered that one of the side effects of Ativan was respiratory distress. The Ativan had caused my nighttime oxygen to slip from 84% to 57%. After the undrugging, I returned to the sleep lab and found that my oxygen level had returned to 84%.
For years, my brain had not had to produce it own stuff for sedation; now it couldn’t. I would sleep a few hours, then wake in a rage. According to the PDR, rage episodes are another side effect of Ativan. Alone in my apartment, I could maintain reasonable calm but during my frequent hospitalizations the behavior of the staff would drive me crazy. The rage episodes would be treated with the Ativan that was causing them. Dr. Ghaly did not believe me—flat out, for the first time in our seven-year relationship, he did not believe me when I said it was the Ativan. It caused a major rift between us.
My gross fatigue and lack of spontaneous movement were remitting; I now only needed naps twice a day. I read my Bible where it says that Peter found a certain man named Aeneas, who had been bedridden eight years and was paralyzed and all I could think was “How long had he been taking Ativan?” It dawned on me that I had stopped going to church when I increased the Ativan from one to two milligrams at night. The half-life of Ativan is about twelve hours—take it at 11:00 p.m. and you can’t wake up at 8:30 a.m. to go to church. Because of a pill, I could not gather with others to worship God.
I was pretty pissed off, but no longer could take drugs to obliterate that reality. If you are upset in the hospital, they bring you a pill. You are taught that it is important to maintain a false calm, not to solve the problems that are upsetting you. After nearly three decades of drugging, I finally had to face my own anger. Nobody likes anger. Nobody wants to be around an angry person no matter how justified his or her anger may be. Paul and Dr. Ghaly both had extraordinarily high tolerance levels for my anger but no one else did. All of society and the medical industry taught me that my anger was unacceptable. Take a drug, they said. Take a pill; it will help you.
I finally learned that who the drug would help the most was the person who wanted me to take it. I didn’t mind being angry; they minded me being angry. An entire society said, “Make her stop screaming at us,” and with the pills they accomplished their goal. Without the drugs, I would sleep a few hours, wake up to go to the bathroom, then be unable to go back to sleep. I would lay in the dark for an hour, seething with rage, and then I would get up and write.
I had always been a writer but it was a random entertainment until I entered puberty and first became suicidally depressed—then it became survival. Then, I wrote for therapy, wrote to live, wrote to make sense of what was happening. Now, I wrote because what began in a rant would end in understanding.
I began work on “Nephrogenic Diabetes Insipidus: Why I’m Really Pissed Off.” It was a major piece intended for use as a teaching tool for paramedics, nurses, and doctors—if any teachable ones could be found. When I stopped the death by drugging, my 24-hour urine output was around seven liters (normal output is under two liters). The longer I stayed off drugs, the higher the output went. Around nine liters, I went back on the HCTZ, and again became assailed by morning nausea, diarrhea and lack of appetite—classic side effects of HCTZ. The doctors who insisted on a colonoscopy were wrong. I didn’t need a colonoscopy: I needed to stop taking their drugs.
Additionally, with the HCTZ, I again was having unusual tiredness or weakness—the sign of an immune system struggling to keep up. I had been taking HCTZ at bedtime for ten years, and I had been doing my most productive writing at night before I went to bed. The only time my mind was clear enough to work was at the end of the day before I took the drugs. (To be continued)