…it may be more useful to locate the personal not in content that reflects the world but rather as a method for observing how we experience ourselves in the world. When the personal is considered as a method of experiencing rather than as an assertion of stable experience, new possibilities emerge for considering the personal as a construct for use in world-making. – Alice Pitt, The Play of the Personal, 89
As I prepare a new course (HON2515 – “Narrative and the Caring Professions”), I am back in my med school files this week. Here’s an excerpt from the “personal illness narrative” I wrote in 2008, while I was teaching a section of “Medicine and Society” to first-years at the UNC School of Medicine.
We’ll use a lot of narrative in all my classes this semester. The challenge will be to use story not as a way of making final sense of what has led us to here, but rather as a frame and a way-in. In this commitment to the contingent and incomplete nature of storytelling, the narrative medicine theory I dug at UNC has much in common with the currere frames I worked with as an education grad student. Neither approach has yet transformed its field; both should.
I am also taken this week by Arthur Frank’s The Wounded Storyteller: Body, Illness, and Ethics. He describes “restitution”, “chaos”, and “quest” archetypes for the stories the sick tell.
“Restitution” stories are culturally satisfying, because they conform to what the culture needs of its sick people (to want to get well, to do what they are told, and to heal up and get back into place). They are troubled by “chaos” stories, which are culturally repellent, since describing the actual fragmentation and disorientation of illness overflows the capacity of language to contain (much less shape) it.
“Quest” stories, instead, are descriptions of transformation in which the old is swept away and a new, previously unimaginable engagement with life and its inevitable end becomes the new normal. Frank calls for an enlarged capacity to “witness” the true nature of sick experience, which empowers the sick, improves the quality of care, and above all engenders real community (“Witnessing always implies a relationship; I tell myself stories all the time, but I cannot testify to myself alone” – 143).
So here’s one of my stories. Not sure yet what to make of it through Frank’s eyes. What do you think? I look forward to telling – and witnessing – the stories of my students’ educational journeys this semester.
* * *
“You have alopecia areata. From the looks of how it has progressed so far I imagine you will lose the rest of your hair within the year. The cause is unknown – possibly autoimmune-related, but some also believe stress to be a factor. There is no cure, although steroid injections at the site have had moderate effect. There are also some early promising studies of Rogaine helping. There are no other serious health effects – your nails might get brittle and soft, but other than that you’re perfectly healthy. The nurse can talk to you more about treatment options.”
I had gone to the dermatologist at my fiancé’s insistence. It was 1995. In February I returned from a three-week stay in Spain with twelve of my high school Spanish students, and when she picked me up at the airport the first thing she said was “What happened to your eyebrow?” I looked in the visor mirror and noticed that half of my left eyebrow was gone.
I figured it was just part of my genes. My Dad had always had a few uneven patches in his beard (“firebreaks,” Mom called them), and I had noticed a couple of weird bald spots on my legs, but I thought it was just where my new motorcycle boots were rubbing on my shins. And the bald spot on the back of my head was around where that mole had been removed. No big deal. But she was really worried, so I made the appointment.
But in fact, according to this doctor with the bedside manner of a Doberman pinscher, I had a disease that would make me lose all my hair and could not be cured.
I was going to lose all my hair, very quickly.
The shock was disorienting. I do not remember if I had any more questions then, or if I got them answered on the still-new “internet” the next day at school. I do remember trying to understand what this would be like, and failing to really grasp the heft of it. It was frightening, but I was also quite numb – I don’t think it fully sunk in for several weeks.
The doctor mentioned it being related to autoimmune function, and I read that in essence what happened was that my immune system was “too strong” and was shutting down hair follicles as effectively as it was stopping disease (was this why I had so seldom been ill? What a tradeoff.) Mom had multiple sclerosis, which was autoimmune-related as well: was I at risk for that too? Further reading, though, suggested that the “strong immune system” explanation was too simplified to actually be “true” in any causative way. So much for science. How much else of what I thought I knew about health was really just “dumbed-down” for general consumption?
I lost the rest of my eyebrows pretty soon after that. I could not stand the way I looked without eyebrows. My face was alien – even though it is impossible to really see yourself in the mirror the way others see you, I could sense that my facial expressions were off, skewed by the absence of anything above my eyes. I seemed to look a little farther away than I actually was. It was scary, looking so strange. And my eyelashes must have gone about the same time, because suddenly I was getting dust blown into my eyes all the time. I never realized how useful they were until they were gone.
I kept losing hair. It came out in the shower over the next couple of months. I could feel my scalp under a light fringe at the back of my head, and I felt that I was looking progressively stranger. One day I decided that, if I was going to lose it anyway, I wanted to see what it looked like black, so I went to the drug store with my goth friends and bought a package of dye to make it so. The effect was ghastly, and I knew it – the pale of my weird featureless face all the more noticeable under bottle-black bangs. It helped in a way – I felt like I was saying “I cannot control being hideous, but I have taken control over how hideous I am.” God knows what my students thought during all of this.
Things went on this way for a few months, and I guess I was trying to pretend that it was no big deal and just “man up” and push through it like I was trying to push through everything at that point in my life. Mostly I think I was just scared. I attended a performance of “Stomp!” later that spring, and in the cast there was a drummer with a totally shaved head and a big gold hoop. I saw him and could identify. I was a drummer: maybe I could be like THAT guy. It looked good on him. He did not seem embarrassed at all. He chose to be bald.
The next night I cut off the rest of my hair in the bathroom, then used an electric razor out on the deck to shave down the rest. It hurt to do it – I think the razor was dull – and it took a long time, much longer than I thought. When I was done I wet-shaved the whole thing carefully, trying to navigate the unfamiliar topography of my skull with the aid of two mirrors and some cursing. Finally I was totally bald.
The first thing I noticed about being bald was that I was cold. COLD. All the time, regardless of the weather. And so vulnerable! I ducked every time anything grazed my head, even the slightest breeze. I was exposed to everything, experiencing the world completely unmediated. Ceilings seemed lower. I explained the new look to my students; everyone wanted to touch it, of course, and that was intense and intimate at first, unexpectedly so. I told them they could each choose to touch “the head” once at some time during the year, and they could chose when. I would track it in my grade book. And they did, respectfully, for the rest of the year – after a quiz, at lunch, on the bus back from the cross-country meet – then shivered and laughed and tried to explain to each other what it felt like.
I had – and still have – humor as my main response. My original smarty-pants defensive answer to questions about why I was bald (“because I’m from the FUTURE….”) got a lot of laughs, as did my claim that God had taken my hair away because, after twenty-four years of bad haircuts, I clearly did not know what to do with it. I even had a solid bit about my brief experience with cortisone injections, which I tried in my eyebrows for several months in 1996. They hurt more than anything on my face had hurt before or since, and the hair, when it came, was in strange little plug-like tufts. The shots needed to be given monthly if their effect was to be sustained, and each had a steep co-pay, which led to my devastating punch line: “I realized I wasn’t actually buying eyebrows, I was renting them!” My band even did a gag song called “Bald Men” on the topic. (“Bald Men / they’re playing saxophone / they’re not afraid of tax returns or soybean futures…”) The jokes covered the pain and the sadness that no “cure” was much of one. I stopped the treatments after a few months with nothing to show but some scarring.
I don’t make the jokes much anymore, and thirteen years on, I really do not think about it too often. As chronic conditions go, it is very manageable. I touch up my uneven scalp every morning in the shower as mindlessly as others shampoo, use sunscreen daily, and have a lot of hats that wear out pretty quickly. My nails split easily, which can be painful. Almost no one in my life now even remembers me with hair. My way of discussing it as I grew older has turned into a three-sentence summary for curious grownups and a Mr. Rogers-style “everyone’s body is different” response to my own children and their friends’ questions. For a while I told all my students at the start of every year about it, in fear that the kids would think I was sick if I didn’t, but it soon became apparent that it was not too troubling. After Michael Jordan, Bruce Willis, and Michael Chiklis, people don’t seem to look twice at a youngish bald man.
Every once in a while, though – a few times a year – it still backs up on me, sometimes hard. I have been told ad infinitum that “it looks good on me” since “at least I don’t have a bumpy head,” and I feel pretty good about the glasses I chose to minimize the eyebrow issue (and I think their blue color “cools off” all my pink skin). But some days I just want to be more or less invisible again, to look like everybody else. Demographically, alopecia afflicts more young teenage females than anyone else, and I know the self-confidence issues must be devastating. It could be so much worse. But in a small way I feel like my experience gives me some shred of insight into what it is to be different, to be unable to blend with “the crowd” through no choice of your own: to have something about you that you cannot change however you would like to. Which state of affairs, of course, would describe most of us.