Within days of receiving my cancer diagnosis, I realized that I was abnormally afraid of things that most patients with cancer took more or less in stride. I was terrified of my doctors and of what I was going to have to let them do to me "for my own good": fill my body with highly toxic chemicals; put in a port – a device to help them dump those chemicals straight into my heart; paralyze me so I couldn't breathe on my own, then stick a tube down my throat and breathe for me while they cut off my breast; shoot me so full of radiation that my skin would break down into oozing sores…
I was terrified beyond words. That did not prevent me, however, from trying to find the words. "You may as well know," I told my oncology team early-on, "that I am terrified of you. You're only slightly less terrifying to me than the cancer itself."
A good doctor-patient relationship requires effective communication on both sides. My attempt to speak honestly and openly about my fears was admirable, but it did not work out well. My words distressed and slightly offended them. From their point of view, they were knights in shining armor trying valiantly to save my life.
Try though I might, I couldn't make them understand how it felt from MY point of view. Try though THEY might, they couldn't protest the beneficence of their treatments often or sincerely enough to make me less terrified.
After my first dose of chemo, I wound up in the hospital with a rare side effect from my doctors' "beneficent" medicine. I shared the same info with the medical student who was assigned to take my history. "You may as well know," I said as I settled into the hospital bed, "that I am terrified of all of you."
Indeed, every muscle in my body had tensed up, and I felt like I was in imminent danger. My medical PTSD was in overdrive. I was sitting there in the heart of the beast. I became hypervigilant, wary of everyone and everything around me, poised to defend myself from unknowable threats and unable to sleep for more than a few minutes at a time, even with a sleeping pill.
With me balancing on this thin emotional edge, late the first night some witless resident asked me, on her way out my hospital room door, "Oh, by the way. How do you feel about being intubated?"
To her, intubation was clearly not that big a deal. But to me, she may as well have been asking how I felt about being gang raped. It took the night nurse more than hour to talk me down from the sobbing, hysterical, "fight or flight" mess that Dr. Oh-by-the-Way had so carelessly created…
Early in the morning on the third sleepless day of my hospitalization, the medical student came in, as usual, to check on me. She looked as tired as I felt. I scooted down toward her, at the foot of my bed. She stood, silhouetted in the windows.
"What can I do to help you be less afraid of us?" she asked with sad eyes.
"I wish I could tell you," I said, my eyes filling with tears. "Why do you ask? Is there something I've done here that was wrong? In my fear, have I been treating everyone poorly? Please tell me so I can try to behave differently next time."
She pulled up a chair, sat down facing me and took my hand gently, unhurriedly between her own.
"No," she said. "You didn't do anything wrong. I just wish I could do something to help you be less afraid."
I explained why I found the whole medical enterprise so brutalizing and frightening and how intractable those feelings were, despite the fact that I knew modern medicine also does some good things. She protested that medicine was purely constructive – not destructive in any way.
Then she looked at me sitting there with tears in my eyes and said, "I'm not going to be able to convince you differently, am I?"
"No, you're not," I admitted sadly. "I wish you could. But I don't know how to make these feelings go away."
And then, to my surprise, she also started to cry softly. So, we sat there, us two, for some time, crying and talking – she, in pain because she couldn't reach and soothe my fear; me, in pain because I was caught in the emotional hell of my PTSD.
I don't know how it came up, but we began to talk about what med school was like. She spoke with awe about the profession she had chosen, her tears gradually fading. She had an almost reverent love for the practice of medicine and her words drew me in.
While she poured herself a glass of water and tried to compose herself, I took a chance. "Have you ever intubated anyone?" I asked.
"Once," she said. And she described what it had felt like. How her instructor had put his hand gently on top of her own, to guide her and help her feel what the procedure was like when done correctly. I sat there, spellbound, vicariously going through the experience of taking care of someone who needed help breathing by snaking a tube carefully down their throat to keep their airway open.
"If I HAD to be intubated right now," I found myself thinking, "I would want her to do it."
I realized this was irrational. She was just a medical student, after all, and had almost no experience with intubation. But it didn't matter. I wanted her because… Because she loved medicine so much. Because she cared enough to cry with me.
I only saw her one more time, briefly, during a later hospitalization. It was obvious that she was very embarrassed at what had occurred between us – this sharing of tears. That's not how doctors are supposed to behave, after all.
But I remember the experience differently. I remember it as one of only two occasions during my cancer treatment when I felt that "the doctor" really got it – when the doctor understood and accepted my fear on its own terms, rather than taking it as a personal affront. And when, reciprocally, I was able to see a little bit of their world, the world of medicine, on its own terms – as something other than what people use to hurt you "for your own good."