My best friend Marie flew in from Chicago last Thursday to watch the kids while Bill and I attended the Narrative Matters conference. On Friday morning, while Marie helped me get ready I made a confession, “Sometimes I think it’s all in my head.”
Other people roll their eyes; Marie rolls her whole body. I’m sure part of this is being Italian-American and, therefore, prone to non-verbal forms of communication. I suspect, however, that it has a great deal more to do with the fact that Marie is the hearing child of deaf parents. Marie grew up learning English and American Sign Language (ASL) and is fluent in both (as well as Spanish). In ASL, signs as well as their location relative to the body convey important meaning, like when an event happened. Any time I have watched people sign I am struck by the amount of facial expression used, far more than seems typical among hearing persons. So I always assumed that Marie’s physically expressive nature related somehow to her ASL fluency and her experiences in the Deaf community.
After I made my confession Marie widened and rolled her eyes while simultaneous rolling her head in a circle and pivoting her shoulders so that her palms faced outward, her fingers spread-eagle. She was exasperated, “Ok, either you’re really sick or the best fucking actress in the world.”
I don’t know why I insist on doubting the veracity of my illness. Perhaps it is the years of clinical training. Whenever we could not identify the source of the patient’s problems or treat them effectively, we assumed that the complaints were psychosomatic and absolved ourselves of any responsibilities. This bothered me as a young nurse. Even without any illness experience of my own, it seemed rather arrogant to assume that the patient was “mental” if the physician could not identify the illness. The underlying premise of this assumption is that modern medicine has no remaining unsolved mysteries. And, as a patient with an illness about which so little is understood, I can assure you that modern medicine has long, long way to go.
Years ago I hated the way families were treated when no explanation for their child’s illness could be found. In some cases providers diagnosed such cases as Munchausen syndrome by proxy, in which an adult caregiver ensures that his or her child will experience some medical affliction and, consequently, causes the child to suffer treatment. While I have no doubt that there were cases worthy of this diagnosis, it always struck me as a little too convenient, a bit of a cop-out.
Perhaps I internalized this “blame it on the patient” tendency a bit. When I reach the top of the stairs out of breath, heart racing I tell myself, “You need to deal with your anxiety.” Or maybe it comes back to control, if it’s psychological, then I can reverse it somehow, “Maybe anti-anxiety medications would help.”
Yesterday I had an exercise test done in the pulmonary function lab that left no doubt that my illness – my difficulties breathing, my rapid heart rate, my activity intolerance – are physical in nature. First I had to do pulmonary function tests. My forced vital capacity, the amount of air I can forcible blow from my lungs, was 26% of the amount predicted for someone my age, gender, and size. In January, the same number was 42%. Then they put me on an exercise bike and hooked me up to an EKG and the pulmonary monitor. As I began to pedal they recorded my physical response. Within two minutes I had “peaked” at 75% of my lung function an 85% of my target heart rate. I lasted 6 minutes on the bike. And, to think, I used to ride 36 miles at a time. It was time to accept that my brain had little control over my disease-ridden, weary body.
On the way home Bill was speeding. “Slow down. The kids are already going to lose one parent; they cannot lose two. You need to drive better.” I told him it was time for us to face to cold, hard truth: the end of my life is drawing near. It is time to make a living will, a will, plan the funeral arrangements, etc. He agreed but I could tell that he is still not willing to raise the white flag. And I need to see his surrender so have his permission to go.
We went to the movies with a friend to see, “Burn After Reading.” As I watched the trailers for the Christmas releases, I wondered if I would be here to see any of those films. The movie was amusing but even my George Clooney crush could not pull me out of my despair. All I really wanted to do was crawl into a ball and cry. Why hasn’t all my anticipatory grief left me more prepared for this? I thought I was already skilled at navigating these waters and that the march toward death would eventually lead me to some sort of sea of tranquility where it was all well. I guess I was just delusional or maybe the tranquility comes when I start getting some nice narcotics. I’m not above drug-induced tranquility. I may have successfully avoided ever taking a single puff on a joint (family history of substance abuse left me petrified of addiction), but I am more than happy to take whatever drugs they will give me at this point. When the 76 year-old mother of a friend went to discuss sleep issues with her doctor, she expressed concern about addition. He handed her the prescription and said, “At your age, go ahead and get addicted.” I think this advice applies in my situation as well; I figure at this point I have little to lose.