A Photograph of me without me in it

A Photograph of me without me in it
A photograph of me without me in it

Thursday, September 26, 2013

Gasping for Air

Last night I gasped like I had been thrown by a rough ocean, swirling underwater until I could find my way to air until finally, my lungs aching, emerging, taking an audible gulp. 

As young Reubin in Leif Enger's Peace Like a River says, "A sob rippled up my throat and I couldn't do a thing about it." 

At the end of our first class called, Caring for Persons with Lifelong Health Conditions, I had approached the professor because we had scheduled this time to talk about my disabilities and her class, something I do with every professor.

When I opened my mouth to speak, however, I gasped with a dry sob. "This is going to be an intense experience for me," I said--or tried to say through my gasping. 

For the last hour of class, we had watched the Frontline film Facing Death: A Day in the ICU. As I watched this film of sick people pushed down white hallways and into elevators in their rolling beds, I recalled my own experiences for that month in my hospital bed after neurosurgery to remove a brain tumor that was the size of a plum and as old as I was.

As I watched the film and remember, looking back, I also looked forward. I thought about the possibility of a recurrence, something that's happened once already, and as I watched these dying and grey, flat-templed and slack-jawed men, I wondered if that might be my experience. 

Death and dying isn't something that I generally dwell on, but I'll have a regularly scheduled MRI for the doctors to see if there's been another growth next week, and I'm always more labile before those appointments, appointments that occur twice a year (is that biannually or semi-annually? I can never remember.)

When I talked with my professor after class, she was kind and present and shared some of her story with me. "We are all wounded healers," she said. I nodded as I tried to steady my breath.

It's true. We all have our stories. Today, I interviewed my Silver Sneakers exercise teacher Chad, who has been legally blind since he was four years old, about what it's like to be blind. I have now completed about 35 interviews with people with life-changing health conditions and another 15 with people in our lives for a book I'm calling Sharing Our Stories of Life-Changing Health Conditions

The premise of the book is that in sharing our stories with others, perhaps those with life-changing health conditions or those in our lives, or perhaps people in the healing fields, we experience our own connections to those who may be like us: wise and vulnerable, funny and profound, human.

As Chad said at the end of our interview, "I believe we all have a gift and sometimes our uniqueness is a gift. As far as I know, we only get one chance at this life. I gotta embrace it. We really can lift other people up. We get by with a little help from our friends."

I agree with Chad that we each bring a gift to this world, and for those of us with life-changing health conditions and disabilities, we bring grace to the world when we share our perspectives.

I feel sad when I think about my own death--after all, I love living-- but I do not feel afraid of death. I have only ever been afraid of living a lackluster life. (Well, of that and spiders).


In college, I read another soul-searcher's story when I read Thoreau's Walden for the first time and read on the opening page this well-known explanation of his year by a dirty little pond: "I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived." 

At the time, I ached with a loneliness that was not obvious to most others, and I feared that I would lead a dull life. 

Perhaps it has been through my struggles that I have found the intense joy which marks my adult life. When I divorced my doctor husband and joined life with my life partner Ann, a teacher and twenty years my senior, I came out reluctantly to my friend Sonya. She listened to my story and said, "I never took you for such an interesting story."

I was a little insulted. Sonya and I had spent a lot of time together, including a week to Glacier National Park in Montana. I knew she didn't like how loudly I yelled for the bears as we hiked during the day and how deeply I slept in our flimsy tent at night, but I hadn't realized that I had seemed to dull to my friend before coming out. 

"Ah," I thought. "Perhaps I will live an interesting life after all." My life has continued to be interesting: I've taught teenagers whose spirits I loved; I've survived two brain tumors, pneumonia, the swine flu, and so forth; I've survived a car crash that pushed my car thirty yards away from its intended direction and folded the car in on me, requiring the emergency responders to cut my little Honda's top off in order to extract me; I've left my 26 year career in education and am seeking a masters at the school of social work in order to become a therapist for others with life-changing health conditions; I'm finding new passions and new gifts; I live with a daily joy, grateful for the presence of grace.

Perhaps I am interesting after all.

I have been working with my niece Isabella for the last week on her essays for a prestigious scholarship, a scholarship that her mother was awarded and that my high school counselors--I've just remembered--wanted to nominate me for, but I declined. (No, I wasn't too good for the scholarship at all, and probably would not have survived the intense weeding-out process: it was just a bad match.)

When I told Isabella that I had declined the nomination, she said, "You get The Most Interesting Person Award." And this from a teenager (even if it is Isabella who is so remarkably kind.) High praise, indeed. 

Yes, I live an interesting life, a life of joy and grace and sometimes intense sadness. 

As I say so often, I am lucky. 






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