In my life as a pediatrician I have twice now had the astonishing, humbling and even joyous experience I am about to relate. Only twice.
The first time was many years ago when I was a younger doctor. I had recently moved to Portland and joined a busy general pediatrics office as the first (and only) female. It was a busy practice, with each of us seeing about 30 patients a day. One Friday, after an exhausting week, the nurse handed me the afternoon’s schedule and said “the last two patients of the day are new patients; they need a complete physical.”
Whaaat? Two complete physicals at 5 PM on a Friday? I was really annoyed. “Oh,” she said, “did I mention that they are mentally retarded?” I couldn’t believe it. I spent the afternoon annoyed.
Their mother asked to see me alone. She was from Georgia or Mississippi, as I recall, one of those “deep South” states - about which people who were raised where I was (Palo Alto) - often have prejudices: backwards, poor, uneducated. At first glance this woman confirmed all of my most shameful stereotypes: she was massively overweight, missing a few teeth, somewhat disheveled. She explained that she was a single mother with no money who had recently moved to Portland with her two “mentally retarded children” who needed to “find some school to start in”. I sighed. Great. Just great. But while she did not say so, her demeanor pleaded with me to care about her family.
The two kids came in, the boy tall and gangly with a cheerful smile on his face, the girl short and round like her mother, with a teenager’s surly scowl. She talked loudly and aggressively. I took them into separate rooms for the physical and then we four sat together to talk. Do I need to tell you that within ten minutes I was in love? These two children charmed and enthralled me. They made me laugh; their plight made me cry, and they were to remain favorite patients for many years. Afterwards, their mother asked to speak to me alone again.
“Doctor,” she said, “ do you know how I found you?” She mimed her own answer, “I took the phone book and opened it to the page of children’s doctors and prayed to the Lord: ‘Lord, put my finger on the name of the doctor who will love my two poor retarded children,’ ”. And her finger fell on the air space between us.
Well, I guess we never learn. That encounter was about 18 years ago and recently the fates tossed me another opportunity for humility.
Again it was the end of the week. Maya, our intake coordinator, who speaks to all families seeking to come to the Kartini Clinic, had warned me that she was scheduling a “possibly somewhat difficult patient”. Right. A young adult male, she explained, with severe autism and weight loss, maybe anorexia.
By the time I arrived in the office I was already tired from a week of relatives and holiday “cheer”. Talking to the mother did not help. She was a single mother; the father was not helpful to her or her son; the boy had dropped out of school; he refused to eat; she refused to cook; they had no family life; she would not be taking any time out of work to help with treatment, etc. etc. Good grief, I thought to myself, why me!? Obviously I won't be able to offer much. Why ask me to help with a food problem when what they seem to need is a full time social worker?
Cranky, I entered the room. The young man looked at me through his lanky bangs, trying -- but not succeeding -- to make eye contact. He had been unable to fill out the Beck Depression Inventory (BDI), and so I gently took it from him.
It was clear that the REDS-C, our usual semi-structured interview designed for children with anorexia or bulimia, was going to get us nowhere. So I just sat down and listened to him talk, fearfully, about what he would and would not eat. Mostly not eat. He consistently ate about four or five different things, all soft and bland. It had always been so, but with the increasing intensity of his adolescent struggles with his mother, he had taken to secreting himself in his room and eating only a minimum, alone. He began sleeping during the day and staying up all night, for the peace and quiet and certainty of solitude.
I explained that from his history and the one his mother had given me, I felt he had “selective eating”, a condition present from earliest childhood, more common in males and sometimes seen in people with autism. He nodded. He had been worried for days that his mother would bring him here and that I would force him to eat things he found repulsive. I assured him I would do no such thing. I told him I’d written about selective eating and added that I don’t feel we currently are able to change the course of these deeply held preferences in any meaningful way. Moreover, knowing this had helped us de-pathologize this behavior and help families accept their child with this preference variation.
“You have written about this?” he asked me.
He jumped up and took my hand. “Then let me be the one to thank you,” he said, with feeling and… kindness.
We talked for a long time. I was filled with amazement. I talk to a lot of “smart” kids, but this young man was one of the most insightful, articulate, wise, and delightful young people I have ever spoken to. Ever. When he looked up through the veil of severe adolescent acne, appallingly untreated, that covered his face, neck, back and chest, through his lanky hair, you saw two eyes searching for someone to speak to. His vocabulary was that of an English professor, his analytic brain that of an adult scientist. He shifted in his seat, flapped his hands when excited, and made eye contact only intermittently, but he spoke with a fluidity and charm that is hard to describe. There’s no way I would have referred this boy to someone else.
Please, I prayed, let me be the one to help him. Thank you for this lesson in never judging a book by its cover, the spirit by the vessel that contains it, the psyche by the limitations of soma.
Thank you for this patient.