Wednesday, March 04, 2009

An Unwanted Journey: Day 1200 - Community, Stories, Conversations


It's been close to a month since we last had a home visit from our palliative care physician. That's usually a good thing, since he would certainly have made an earlier visit should there have been any symptoms reported by me or the CCAC nurses that were worrisome. As it turned out, Monday I had decided that I would request a visit as soon as possible anyway.

It was a day of incredible fatigue. I slept most of the day and night. Each time I got up to visit the washroom, I felt the pain radiating throughout my entire body with the breakthrough pain medicine unable to alleviate it. Being the melodramatic drama queen that I am, I kept hearing in my mind T. S. Eliot's The Hollow Men:

This is the way the world ends

This is the way the worlds ends

This is the way the world ends

Not in a bang but a whimper.

If it had been just one day, then I'd say no big deal. But there have been several like it in the past couple of weeks, leading me to wonder whether the "miracle" days were over and I was experiencing just another phase of the disease process.

The stories we tell are important. They're important even if the narrative is something created on the spot and just for ourselves (such as extracting a particularly negative image from Eliot's poem). They're even more important if created in the context of community, out of continuing dialog about who we are and what our purpose is. They tend towards immortality if they have a mythic quality, say a parable repeated again and again, especially as answers to questions without definitive answers - you know, something like what Jesus did repeatedly either to defuse religious confrontation or as the only way to talk about metaphysical realities.

The cancer experience - especially in the context of the end of life - may entail healing through storytelling. Healing of the individual, healing of care givers, healing of visitors and even, occasionally, healing of many through the ripples of time and place. That kind of healing is restorative. It is all about generosity, possibility, and, oddly enough, accountability.

One example might be an extended family which makes itself accountable to ensure each member of the family does the recommended colorectal cancer screening recommended for all first-degree relatives. It might mean school children making themselves accountable for spreading information in their schools about colorectal cancer and how readily it can be prevented.

Cancer in the community provides opportunities for generosity. I've seen it many times and been the beneficiary. It also is an opportunity for the community to look at possibilities for caring for patients outside the borders of medical institutions and services.

It can also be the occasion for amplified pain and horror. As soon as the narrative of cancer includes a retributive context, pain increases needlessly. An example might be the individual patient or family members blaming themselves because of repeatedly telling themselves that they were negligent about nutrition or getting a diagnosis quickly enough. Since the story never changes, and since that narrative precludes healing, I'd have to say that it's a bad thing, a way in which the community surrounding the patient is corrupting the healing environment.

I guess what I'm saying here is that one must be constantly on guard about the stories one tells or allows to be told, about the conversations held in his or her presence. Cancer, after all, is about so much more than the disease itself.

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