A Different Shape of Time

Reflections on my son's illness, September 2005

A Different Shape of Time

My 15-year-old son Christopher has had meningitis four times now since the beginning of July. He was released from the hospital again yesterday, but we have to assume that there will be another outbreak of the illness - since the beginning of July, the intervals between "episodes" have lasted about 10 - 14 days. There is a very rare strain of meningitis called Mollaret meningitis, which is what it says on Christopher's release papers, which eventually just goes away without leaving any permanent damage. Until then, however, these "episodes" may go on for years.

This is the scary part: as long as Christopher continues to have recurring outbreaks of meningitis, during which he goes into a kind of semi-conscious twilight zone of pain and delirium for several days, he will be unable to take responsibility for any kind of deadline, for anything that has to happen at a certain point in time, because at any given point in time he could be back in his twilight zone. Given the way our society functions, this effectively means a severe handicap for as long as this condition lasts.

But isn't a "handicap" always a symptom of a more deeply rooted problem in society, a manifestation of what is repressed? All summer I have been struggling against the feeling of disintigrating entirely into an archetypal female caregiving function. In the course of that struggle, I have been trying to read my experience not as a maternal abandonment of self, but rather as a different experience of time. Whereas the predominant model of time focuses on a linear progression of increasingly smaller discrete units measuring productivity, I experience time in the hospital, accompanying Christopher through his twilight zone phases, differently. This is not a linear progression of "time passing", but rather a space or a shape that forms in the rhythm of attention and stillness.

But isn't this enveloping "shape" of being "outside of time" also a very ordinary and "normal" experience? In the course of "meeting deadlines", maintaining schedules, there are constantly various different minor and major "interruptions", occurrences that engage our attention through their emotional impact: death, birth, injury and illness, a new love, a painful separation, all the different circumstances of sex, intense conversations with a close friend or unexpected encounters with a new acquaintance ... Or the washing machine or the boiler or some other vital piece of equipment breaks down ...

What makes Christopher's condition a "handicap" (thereby forcing me into the uncomfortable role of the mother of a handicapped child) is the intensity and unpredictability of it - and the fact that it is recurrent and non-controllable. As long as we can keep interruptions in the linear progression of time under control, we can still "keep up". In "time out" phases, we are not "productive", in the broadest sense, and the reason why this feels threatening is that we have learned to derive our sense of self-worth from our ability to be "productive" in some form.

Under "normal" circumstances we learn to cope with continuous transitions between linear "productive" time and a non-productive "shape" of time - mothers more than anyone else, because certain smaller and larger persons feel entitled to claim our attention at any time. What makes Christopher's situation different is that I can't even dispute his claim on my attention - you can't negotiate with someone who is delirious.

I have found it next to impossible to work all summer, because the phases of non-productive attention time have been so intense that I find it hard to make that transition and reconnect with linear time. That is what I have to learn to do now.