It was 1 am the third night of my stay in the Trauma Clinic. I’d been weaned off the morphine that had kept the worst pain of my shattered torso at bay, and I had been told that I would leave the clinic the next day or the following day, as soon as the body brace had been made and I could walk in it. My brother, who had stayed with me the first three days, had had to leave. My husband and son were Arizona, trying to drive back East and find a way to get me home. All evening there had been calls back and forth trying to figure out how to get me home. I was still reeling from the accident, from the pain,and now from the stress of trying to figure out the next step. I lay in the sand I’d brought in with me, sweaty and filthy, and I wept. Not sobbing or groaning, just weeping.
A light knock on the door and a young resident came in, a pleasant looking young man with blond hair and a sprinkling of freckles, he came up to my bed and stood over me. “Why are you crying?” he asked, and there was an edge of irritation in his voice. I looked up at him. “I hurt. I’m being thrown out of the hospital. I don’t know how to get home.” He began with the same spiel the social worker had unleashed on me earlier: “Do you know how lucky you are? Do you know that same night another man died and another came in, paralyzed?” I put up my hand to stop him, but did not stop weeping. “I have thanked God with every breath in my body since I was dragged from that ocean,” I told him, “but I am in pain.” I did not stop weeping, and I looked him straight in the eye. There was a long pause as he seemed to cast around for the right response. Then, suddenly, his whole body seemed to soften, and he leaned towards me, “Oh, I understand,” he said, “you’ve got a broken back, you are in pain, and now you have to deal with the logistics to get home.” I nodded. “Thank you, Doctor. That’s all I needed from you,” I said, noticing that my weeping was abating. What I needed, more desperately than anything else, was someone to simply listen and accept me, in all my pain, at that moment, and by doing so relieve the frightening isolation that attends being so broken, especially in a strange place.
The weeping had begun earlier, and curiously I had not felt ashamed of it. It had seemed true, real, not gratuitous or manipulative, but simply what my body was doing in response to what I had been through. I found real relief in it. The social worker had come earlier and also questioned my weeping, suggesting that I might need anti-depressants. “Are you kidding? ” I said to her, “I don’t need to be drugged. I’ve just been through and am still experiencing a trauma. I’m in a trauma clinic.” She chewed on this a while, “Well, I guess if you were happy that would mean you were in denial,” she agreed. I looked at her, incredulous. What happened to the sense you were born with? I wanted to ask her.
When the doctors had come to tell me I would be leaving the next or following day, I was again incredulous. As unaccommodating as the experience of being in the hospital had been–I had not been bathed or turned, the sheets had not been changed, the nurses all seemed to be running marathons and to ask for a bed pan seemed to put them out–I was overwhelmed at the thought of getting into a body brace and flying 500 miles alone. Oliver Sacks writes of a similar reaction to the news of his release from the hospital after a traumatic injury to his leg. He said he was “dead scared of leaving.” The hospital had been a protected space where he had not only been tended to medically but faced his dissolution. To leave its circumscribed borders was to him to reenter a world that could not understand his dissolution. I too felt the fear of going out into the world in such a fragile state.
Yet the attitude and tone of the staff was to hew to the heroic model. When I took my first faltering steps in the brace, they were there to cheer me on. To smile through your tears, that was being a good patient. To cry or question, however, was frowned upon. Only Emily, my beloved nurse, dared to question the party line, flying into a fury when she heard that they were going to discharge me so early. “You are not ready, this is crazy,” she said, and I could see a few tears of her own. When I confronted the PA, a lovely young woman, about the fact that I had not had any PT or OT, that I was still in tremendous pain, she read me the criteria for “no medical necessity”: pain under control and you walked 120 steps. We both knew this was the formula dictated by the insurance company. “That,” I told her, “is magical thinking.” It was an uncomfortable moment, but not for me. There was almost nothing about this situation I could control, but I could refuse the script of the good patient. I could stay centered in my experience, and not tailor it to make others more comfortable.
Discharge me they did. (Probably with great relief!) I was wheeled up in my wheelchair to the Air Tran desk sporting my new body brace, where the agent, an Indian woman of about sixty stared at me incredulously. “You don’t look in any shape to travel,” she said. “I’m not,” I said, “but that is the system.” “A cold system,” she said. On the plane, I was the object of an almost overwhelming amount of sympathy; here there was no adherence to the heroic model.
The story has a good ending: I arrived home, was welcomed by a loving family and community, and will evenutally mend. But I recount it here for several reasons. It is my story, and by telling it, I am able to find my voice and my humanity in a system that pressures a patient to give up her voice. I share it also as an example of how modern medicine limits its concept of responsibility, and in doing so, abandons, sometimes, its commonsense . Arthur Frank formulates it thus: “According to modernist universalism, the greatest responsibility to all patients is achieved when the professional places adherence to the profession before the particular demands of any individual patient.” He cites William James “I am convinced that the desire to formulate truths is a virulent disease….as if formulas about the Universe could ruffle its majesty and as if the commonsense world and its duties were not eternally the really real.” The formulas, in this case, revolve around the guiding principles set down by insurance companies and hospitals regarding the ideal patient. The commonsense world and its duties–the comprehensive needs of an individual patient, in this case–are sacrificed to those principles.
Why are you crying? Why are you asking?