I am not my illness

By Ann Fontaine

I am not a measure of a central tendency, either mean or median, I am one single human being with mesothelioma, and I want the best assessment of my own chances—for I have personal decisions to make, and my business cannot be dictated by abstract averages. I need to place myself in the most probably region of the variation based upon particulars of my own case; I must not simply assume that my personal fate will correspond to some measure of central tendency.

Stephen Jay Gould, “The Median Isn’t the Message” Discover, June 1985

Many of our prayers in the Book of Common Prayer pray for “the sick.” The language of the prayer assumes that “the sick” are a category and not individual people who happen to have an illness. As Gould notes, his illness is particular to him and he is not a “mean” or “median” category.

In 1993, I was home for the year from seminary, as it was our son’s senior year in high school. I had planned to take that year off to be home for his last year before he left for college. In the spring of my middler year I had begun to feel out of shape and short of breath. I chalked it up to too much pizza and not enough exercise. I thought when I got home to Wyoming I would resume a healthier lifestyle and recover my energy. What happened when I got home is that I discovered I could not walk across a room without taking break. This seemed a bit more serious.

After many trips to many doctors and becoming somewhat of a laboratory experiment for them, it was decided that I had an autoimmune disease. My immune system had decided that it did not recognize my muscle tissue as part of me anymore. Part of the attack by my valiant protective immune response was to make the little muscles in lungs stop working due to the inflammation. (BOOP they call it). All during the process of discovery I would go from thinking, “oh this is terrible” (pneumonia, anemia, etc) to “oh, that would have been okay to have.”

The point at which I changed from interested person trying to discover what was going wrong to “sick person” was when I went into the hospital and they put a hospital gown on me. Once I donned the open backed skimpy gown, I began to self identify as “sick person.” I fell into a category with a variety of statistics piling up to affirm that identity. I continued in that hapless state of non-person as I returned home and continued treatments. Lying on my bed staring at the ceiling was my main activity. I could not really track even a cartoon on TV. Reading a book was too much. I could feel the prayers of my friends upholding me through this time. I had mystical experience of the sensation of showers of stars filling my body from their prayers. But I was still sick.

I returned to church several months later and they were offering the laying on of hands for healing. It was the standard BCP/BOS healing formulation. I asked them to pray for my healing. I did not get well from the disease but what I received was much more than I expected. I was healed of being a “sick person.” I regained my identity as an individual who had a specific disease. I was “me” again. Although I still had this illness, it was not my total self.

I think this is a part of what Gould is saying. We each have our own way of going through the events of our lives. We are not “the sick” or “the poor” or “the whatever.” We have our own set of people and circumstances that make whatever is happening to us different from every other person.

Now, when I pray and work for healing or relief for others, I try to remember this lesson. Yes, there are commonalities in our conditions, and some things are better approached as a category to help solve the presenting issue, but each person is “one single human being” who needs restoration to his or her sense of self to be fully healed.

The Rev. Ann Fontaine, Diocese of Wyoming, keeps what the tide brings in. She is the author of Streams of Mercy: a meditative commentary on the Bible.

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