November 5, 2010

Since the subject of my death has come up three times this week, I guess I’ll write about it now.

This morning my masseuse Jen brought it up in terms of a question. She asked me if I was resisting my death. She also asked me how long I expected to live, and a number of other questions in the same vein. Later today when three good friends visited – Gloria, Franziska and Mary – Gloria raised the topic again. As is typical between Gloria and I the subject of death comes up around the long struggle had by herself, her husband Peter, her son Scott’s many friends and Scott himself to ensure that he lived a good life in the face of his many physical frailties. This was so especially in the face of a culture that strongly reinforces the idea that a young who is deaf and blind and physically quite fragile is of no particular value and ought to have the decency to pass away quickly.

Earlier this week, the subject was raised by another friend who was visiting a friend of hers who is close to death from stomach cancer. She is suggesting that it might be valuable for me to be interviewed by people who provide palliative support, and for me to do more research in this area.

It is curious to me. It is not that I think that I’m actually dying right now. Of course who knows? But what’s curious is that the question of my imminent death has been a shadow in my life since as early as I can remember. It seems that the shadow is shifting to confront me and for me to confront it. Is this because of my age, my current physical state or is it because my friends recognize that the shadow is some sort of limitation in my well-being?

In Cycle 1, there were a number of predictions about my early demise because the then current medical experience with spinal muscular atrophy was that the muscular deterioration that is the major symptom of the syndrome seemed to be relentless and unstoppable, leading in every case to a terminal incapacity to breathe. When I was in my late teenage years, I was firmly told by a medical expert that even though I had lived passed 2, 4, 6 and 12 years of age I would certainly not make it to 30. (By the way, that medical expert is long dead.)

Hence the beginning of the pattern that now leads me to refer to my life in cycles of 30. The story is now famous of my leaving a chronic care institution on the cusp of my 30th birthday, expecting to die within weeks, only to discover that the major source of my illness in the hospital was an allergy to red dyes. I quickly recovered my health, lived past 30, and invented along with the Joshua Committee, my support circle, individualized funding for personal assistants. This huge battle had to be fought and won so that I wouldn’t have to return to the institution.

The next 30 years would see me bringing the ideas of relationship building, gifted capacity, inclusion and much more to the area that usually gets called “disability.”

But, as I said in yesterday’s writing, there was another hidden agenda – at least hidden from me – that lead me to leave a paying job, go on a search for stories about inclusion, and lead to a gradually debilitating series of crises that pretty much began around my 60th birthday. It is fascinating to me that even though I can see the pattern of 30 times 2, I could not see nor deflect the process that lead to my recent near death experience.

But a now a new space is open. I have seen that it is possible for me to enter into a new relationship with my own physical body. I have seen that I can have and explore the experiences of fun, comfort and health, and not solely be driven by an intense desire to contribute to the world and transform the discourse of Inclusion.

And so people are questioning me, and encouraging me to not deny that the issue of my own death causes me to push past personal and cultural limits. Of course, this is not by any means a bad thing. However, it is a costly thing and now is a good time to explore the cost as well as the benefit to me and to others.

What Jen was asking me: “Are you resisting your death?” My answer to her was: “I think that it’s more that I’m unsure whether I’m willing to die.” Perhaps it’s the same thing.

I am more sure now than I ever have been that my life has been valuable to others and that I have made a real contribution. This came out of the first few days of the illness when I asked the question: “Has the message been delivered?” And the answer was a clear yes. This is where the space has opened – I am no longer driven by a sense that I have a job to do and that I can’t die until it’s done.

But, can I live without being haunted by the certain knowledge that someday I will die? Can it just be a knowing without being a prod or a ghost?

Of this I am not yet sure.