Bob Savage, night nurse. I cannot see his face but his large, dark bulk appears out of the night’s darkness in my room at Crouse Hospital. He moves swiftly and silently, leaning over my bed to whisper “What do you need?” He was one of the few nurses who understood that being quiet would help a patient drift back into sleep—as compared to another night nurse who turned on the lights and told me about her dog flying unattended across the country. Sheesh, how insensitive can you get?
Bob was all about sensitivity, about being aware and putting the patient’s needs ahead of his own. We got to know each other through the long dreadful ordeal that began Thanksgiving night last year. I had been put on oxycodone months earlier and at the time I had explained very clearly that experience had demonstrated that I would react to the drug, I just didn’t know how or when.
The day before Thanksgiving, I reacted and had to stop taking oxycodone. Thanksgiving afternoon I went into full opiate withdrawal—chills, fever, nausea, diarrhea—and no physician or physician-substitute came around until Sunday to take a look at me or to offer recommendations. Way to go, Crouse. You take a patient with a dozen compromising illnesses, add opiate withdraw, and don’t provide medical evaluation. Tonight on television a woman in a drug abuse recovery group said simply, “My doctor was my drug pusher.”
Here’s what I know now that I didn’t know a year ago: I have myalgic encephalomyelitis, which is an autoimmune disease that affects the nervous system and the immune system. At Crouse, I asked my hospitalist for a neurological consultation. He said, “You don’t have a brain tumor and you’re not having a stroke, so you don’t need a neurologist.” Crouse has more than one asshole on staff.
What I was having were complete neurological shutdowns: I was fully conscious but could not move, speak or open my eyes. I could, however, hear everything that was going on around me. This was a pretty scary situation. These shutdowns were being triggered by acute physical or emotional stress and, believe me, cold-turkey opiate withdrawal is as acutely physical stressful as you can get. So these episodes, which lasted four or five hours, were happening with increasing frequency. And nobody knew what they were.
So there I am the night after Thanksgiving going through drug withdrawal. Among other things, I had thirty-one diarrhea episodes in three days. I needed to get to the toilet but I was in partial shutdown when Bob came in. I could not sit, stand or walk, but Bob, with his wonderful big muscles, just manhandled me out of bed. I had my arms wrapped around his left bicep while he was grabbing for my catheter bag and saying comforting things. Bob Savage was “taking care” of me in the best sense of the phrase.
I remember sobbing “What is happening to me?” as I clung to his arm and he lifted me out of bed. “I don’t know,” he said, but after I was back in bed Bob put some kind of monitor on me that he could see while he was doing paperwork out at the desk (he was Charge Nurse that night). Bob intended that nothing bad should happen to me, and if it did then he would know about it and be there to deal with it.
It was months later before I would learn that myalgic encephalomyelitis (ME) doesn’t show up on routine blood tests because routine testing only looks at the outside of cells; ME is a problem that is manifest on the inside of the cell: the neurons are shutting down. Son of a bitch. The nervous system is closing down but physicians are not looking in the right place to see it.
I got up tonight to empty the catheter bag, as I must every night, but I went back to bed remembering Bob’s big dark shape moving into my room, and this is important because I was afraid and he comforted me. Tonight my brain is calling him up for comfort, which it normally doesn’t do. I’ve had some pretty frightening nighttime dreams or memories, including one last week that was so awful that we won’t talk about it.
But here’s the thing: day before yesterday I went to Diana Sponsler for medical massage. Last November Diana went to Miami for a “Brain I” educational course; last week she went to Seattle for “Brain II.” I am a little vague on who’s offering this course but I will learn more about it. Meanwhile, she learned something about the amygdala, an almond-shaped part of the brain known to be involved in processing fear. “The amygdala is part of the mood regulating system and when this system [deregulates then] parts of the brain are destroyed gradually [primarily] by cortisol.”
So here’s a fact, followed by a theory. Fact: when I was an infant, at night I would be put in my crib and the door closed. No matter how much I might cry my father would not let my mother go in to comfort me. Theory: all that crying resulted in increased production of cortisol that, in turn, resulted in damage to the amygdala.
And Diana Sponsler, massage therapist, took a course on the brain and then massaged my amygdala. Is that why a comforting memory came to me in the darkness tonight? I think so.
It may have had an even more important effect. Myalgic encephalomyelitis means you have a very diminished capacity to respond to stress. I also have diabetes mellitus, which has been proven to not be related to diet, therefore stress is the next most likely cause of high blood sugar. My average glucose has been over 500 for months.
Yesterday it went down into the 300’s twice, which it never has done before. Unless you think take-out from appeThaizing Restaurant (coconut fried shrimp with sweet chili sauce) can make that difference then the only explanation is massaging the amygdala.
Stay tuned for further data collection.