Wednesday, February 27, 2013
Fade to Quiet, Fade from Quiet--Story and the Body and the First Asheville Ability Arts Fair
For people who are living with disability in their lives, either directly or with a loved one, it is a meaningful, rich, and often humorous conversation. This is a sharing.
I started this blog after I learned I was going deaf. I look at the name I gave it and reflect on how I viewed my diagnosis of late-deafness. A Fade to Quiet. A sort of vanishing. Also, a movement into something mysterious and unknown, unspoken, and unheard.
It was one way of coping with the change, with the "information" my audiologist (now a goat farmer) spoke through a microphone to me on other side of the audiometry booth's smoky glass. It was 2001. Just before September 11. I was 31 years old, with my mind on a lot of other things than my ears. I had a full-time teaching job at a boarding school for boys. I had a wonderful boyfriend. I had a great dog. Aside from dreams of wanting to become a mother, I had pretty much everything I could want.
I have just returned from the Columbia University Narrative Medicine Workshop at 168th Street in Manhattan. The conversations, plenary talks, and small group sessions reaffirmed for me the impact of diagnosis on a person's life story. It changes it utterly.
"It appears to be sensorineural hearing loss," said the audiologist. "But we'll need to make sure it isn't Lupus or a Brain Tumor."
That was the worst part and the hardest to forgive myself for now. I honestly can't say I considered lupus and brain tumor to be any worse than going deaf.
What was worse, I seemed to consider. Dying or living with something that divides you from life? That was how I saw deafness. It was a wall. It was a bell jar. It was removal of 1/5 of my sensory life.
It took longer than a week to get the confirmation.
My diagnosis was not life-threatening. Life-altering, yes. Threatening, no. I felt terrible for having been unable to discern some sort of hierarchy among the three possibilities. Even now, I wonder about the state of my mind at that moment.
Quite simply, I was devastated. And in that devastation there was no discernment. All change, it seemed, was death. I liked my life exactly as it was. Any change to any particular aspect of it equaled an obliteration of the whole.
And that was equal to death for me.
I believe we overestimate our ability to cope with illness and death. We hold ourselves to impossible standards of strength and willfulness. Yet, when a life-alteration occurs, we are equalized to something very rich and human and real. We become authentically connected with the reality having a body presents. It has limits. It will end.
I was insulated safely from any idea that my body would infringe upon my health-bound youth. I did not see disability anywhere in my life save for the occasional student with a prosthetic eye or arm or, of course, a plethora learning-style differences in my classroom. The conversation I never had to have came to me with preposterous hardness and loudness. Words I'd never had to say I found myself saying.
In the craft of Narrative Medicine, this is the story that gets told. This story and the singularly moving stories that hover near it, as told by both the diagnostician and the diagnosed. At the first Asheville Ability Arts Fair, the community has the opportunity to engage this story--through personal experience, through media representation, through conversation and education.
Ten years later, my fade to quiet continues. It is not a death although very little remains of what my life was before and at the time of diagnosis. I see those changes as necessary lessons. As much as I have lost, I have gained in other forms. This is the lesson of diagnosis and of disability. The law of conservation of matter applies not only to matter but to spirit and mind as well. This is what the stories tell us again and again, and this is why it is important to draw them out of the quiet, to fade them into sound.