(Part 3, The Odyssey, Chapter 2)
Tom Johnson, a Therapist Friend of a Therapist Friend, Metuchen, NJ
Another teeny dark office, filled with garage-sale stuffed furniture and noise machines for a hushed, secretive cloudiness. Tom was a nice-looking, sweet, smart man who used some techniques of cognitive psychology, which research had shown to help CFS patients cope better by thinking more realistically in order to learn how to control and deal with symptoms. I was to “shift paradigms”, change my “distorted perceptions,” focus more on the positive.
A typical cognitive therapy program, according to the Maryland University Medical Center, may involve keeping a diary to record energy peaks and valleys; adjusting your schedule to conform to those energy levels; confronting and challenging assumptions and negative thoughts; becoming flexible enough to adapt to the variations in energy; setting limits; prioritizing; eliminating external distractions; accepting relapses with equanimity.
I could certainly have used some equanimity.
I liked Tom. I wrote in my diary, enumerated what deserved my gratitude, kept what Tom called a “monster hall of fame” in which I listed my beliefs about the illness and where they came from, I set goals, I imagined being in perfect health, yadda yadda yadda, even though I felt it was a load of horseshit. (Well, wasn’t that one of the assumptions I had to re-consider?) No psychotherapy, no dredging of old memories, no couches, no sobbing; just a few tiny intermittent tears. And still so much sickness and chronic insomnia that the fifteen minute drive to the Metuchen office each week felt crushing. But I went.
Along with the cognitive behavior therapy, however, Tom agreed with Dr. Schwartzer that an anti-depressant would help. Without a medical degree he couldn’t prescribe one, so he sent me to someone at Robert Wood Johnson Hospital’s Department of Psychiatry.
Dr. Pretty Woman, Psychiatrist in New Brunswick, New Jersey
I planned on parking in the New Brunswick parking lot and walking across the street to the Clinical Academic Building to see Dr. PW, with her black hair, red lipstick and an unidentifiable accent, but on this day, the lot was full and I had to park five blocks away. It was raining and cold, and I struggled with a flimsy umbrella in the strong wind, so by the time I arrived, I was beyond exhausted. Hers was the tiniest of all the offices so far: room for a table for a desk, her chair, my chair, and a file cabinet. Totally institutional.
She interviewed me using a few questionnaires, asking me about the irrelevant, skipping what I thought relevant, and when I tried to add the relevant, she didn’t seem to attend. Dr. PW wanted to stuff me into a familiar box; she didn’t want to deal with flu shots or illness. Rather I suffered from a classic kind of depression and she prescribed sleeping pills along with a standard dose of the anti-depressant Serzone. Whatever. I never thought I’d need this stuff, but I’d do anything to climb out of this hell. I actually felt hopeful. Let’s do this!
That night I took the sleeping pill. I curled up in bed, waiting to feel the sweet descent into drowsiness. It never came. My head and eyes grew heavy and thick, that’s all. The hours passed and increasing stress made my heart pound. If a sleeping pill couldn’t knock me out, what the hell would? How long could I go on like this?
And the Serzone? I became a zombie. Driving to school to explain holistic grading to a group of teachers evaluating 10th grade writing samples, I realized that I couldn’t make any sense out of street signs. The names of the familiar streets I had passed daily for 30 years seemed unknown and strange. Then, at the evaluation session with my head full of steel wool, I felt myself sweating and unable to concentrate. I had to excuse myself and escape to the office of a colleague and close friend, Steve Heisler, whose deep, familiar, understanding voice talked me down. I barely finished the scoring session.
I returned to the pretty but clueless lady psychiatrist, who just kept prescribing other anti-depressants, all with similar results. Rather than feeling at all calmer or happier, I dropped into an inferno of Paxil or Wellbrutrin or Prozac: throbbing headaches, massive brain fog and confusion, suicide-inducing panic. I could no longer tolerate or benefit from my sessions with Tom, who tried his best.
This experience, by the way, is typical for CFS patients who are so sensitive to medication that they frequently endure a paradoxical effect, during which the symptoms become worse rather than better.
I was farmisht (Yiddish: confused, dysfunctional), farblonget (lost, dysfunctional) and farshimmelt (rotten, moldy, dysfunctional). This farshlepteh krenk ( unending situation; chronic illness)was making me meshuganah (crazy). My friends said it was good that I could still laugh at myself. (Was that what I was doing? )
Each time I started a new medicine, which could take weeks to kick in, I resolved to outlast this pain. To endure until I felt the medicine’s lift as it slowly returned me to my life. That’s just how it will be, I thought. I wanted to recover, and so I would. There was a place of peace somewhere, and I would find it. I would become the person I was. She was inside me somewhere.
On days I could eat, I keep a record: oatmeal, tea and protein drink for breakfast; slice of bread with tomato and melted cheese, potato chips and 2 Pepperidge Farm Orange Milano cookies for lunch. How boring and dumb was writing down what I ate?
I walked into my school each morning carrying my brief case filled with lesson plans and student papers just as I had done for the past 24 years. I smiled and muttered “good morning” to my colleagues and students as we passed in the halls. They were their same old selves. I pushed to be my same old self, but I was stuck in the middle of a mortar attack in Viet Nam. They asked, “How do you feel?” I answered, “Well, I’m here.”
Dr. Gary Karpf, Psychiatrist on Cold Soil Road (ouchy name) in Lawrenceville, NJ
The last anti-depressant prescribed by Dr. Pretty Woman was Effexor. After a few days without a drop of sleep, I swear I wanted to die. Unequivocally. I lay in bed in my underpants and pajama top with a head that felt black and swollen, my brain stuck in a mixture of tar and molasses. The tar dragged me toward sleep but the molasses dragged me toward eye-popping alertness. My body ached. I didn’t know what to do or who might help. Frightened and inarticulate, Steve just walked in and out of the bedroom. I called Karen Kantor, my friend and Steve Heisler’s wife, who lived around the block and came immediately. She sat on the bed next to me and held my hand all afternoon.
Jill (Yes, the same one who had recommended Dr. Schwartzer) had been seeing her psychiatrist, Dr. Karpf, for over 20 years and had been encouraging me to try a session. She claimed he was brilliant and compassionate and had saved her life. Disgusted with dark-haired beauty Dr. PW, frustrated by my lack of progress with Tom, desperate for a savior, I called Dr. Karpf . I explained my relationship to Jill and whimpered about my agitation and panic and increase in the symptoms of my illness after the Effexor. “Stop,” he told me. “Just don’t take any more.” I made an appointment to see him on a Friday night.
The Effexor took days to wear off. Atavan which Dr. Schwartzer had prescribed earlier, helped me get a few hours sleep at night.
Steve drove me the hour down Route 1 to a big modern house in the woods of Lawrenceville, NJ, and sat in the waiting room for another hour. The soft upholstered couch, deep-pile rugs, fireplace, plants and big picture windows created a comfortable beige calm. Dr. Karp was a small, cute, balding man in his 40’s with a sweet smile, and, as Jill had assured me, lots of smarts. He explained that I had to feel my feelings, not sublimate or sidestep them or slip into denial. That night, about six months since I had become ill, I sobbed so hard I couldn’t catch my breath. I felt like a fool, but afterwards, to my surprise, I experienced calm and relief. Steve and I had dinner in a funky little Lawrenceville café and, for the first time, I didn’t feel lost inside my health obsession. We were actually able to chat.
Patient, warm, and very funny, Dr. Karp was a follower of Willhelm Reich who, I discovered by Googling, had some pretty nutty ideas involving orgone energy, orgone boxes, and vegetotherapy. But basically, I think the theory that influenced Dr. Karp most was body armoring, a process involving the patient’s repressing emotions to avoid facing painful experiences.
He never spoke of Reich or his theories and experiments, but sometimes he’d actually massage my shoulders and head when I complained of stiffness and pain. That was weird and sometimes actually made the pain worse, but I found him insightful, even wise. I looked forward to and even became dependent on my sessions, though driving the hour each way myself was so hard.. One horrible morning I drove all the way to find a young man sitting in my chair in his office. Doctor Karpf said he thought I had told him I couldn’t come on that day and so he scheduled someone else. I felt so ridiculously lost and betrayed I could barely get home and called Dr. Karp that afternoon to vent my resentment. “How could you give my appointment away?” I cried. “I never said I wouldn’t be there!” Whoa. Who was this person I had become?
Though a psychiatrist, Dr. Karp didn’t like pills, and instead primarily practiced talk therapy (with Reichian overtones, I suppose). But he did substitute Klonopin for the Atavan. I took ½ of a 1 mg pill to sleep. And as my basic illness continued and I felt sucked again into the overwhelming sense of loss and despair, he tried a miniscule dose of another antidepressant, maybe Remeron or Sinequan. After a few days when the familiar soggy, distinctly medicinal brain tar arrived, he told me to stop. “They’ll have to cut off my hands before I prescribe another antidepressant for you.”
Once a week, I left school at noon, ate lunch, drove the hour to Lawrenceville for my 45 minute session, and then drove the hour home. I crawled back into my bed, distracted with pain. I wasn’t weary, tired, listless, exhausted, lethargic or drowsy. What attacked me has been described as “bone-crushing fatigue” but that’s just a cliché unless you can imagine how it feels if your bones/muscle/tendons/veins/arteries and every single cell are being ground underneath a mighty steamroller. Okay, maybe that’s hyperbole but whatever I had was hyperbolic.
One night Steve sat on the edge of our bed. “I don’t want to lose you.” He was crying. “I don’t know what’s happening.” “You’re not going to lose me,” I said, thought I was already lost to myself. I held him tightly. I didn’t know who I was, and I kept reaching back to grab my old me but there was no flesh and bone, only loss, loss, loss.
Meanwhile, I continued to doctor/cure search.
The high-dose (200/mg or more of oral thiamine daily) survey is closing soon – and will be open until Friday, May 7. If you are currently taking high-dose thiamine or have done so in the past, and feel comfortable sharing your experience, please complete the survey here. (Please do not start high-dose thiamine just to participate in the survey.) Find out more about high-dose thiamine in ME/CFS/FM here.
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