I made a reservation to tell one of my stories a few days ago since the NPR MobileBooth is coming to my home town for two weeks next month. My slot is reserved for August 12 in Grand Junction, Colorado, the last stop on its national tour.
Since 2003, tens of thousands of everyday people have shared life stories with family and friends in StoryBooths in New York City and Nashville, and in MobileBooths traveling the country year-round. Everybody’s story matters, every life counts...
If you would like to tell one of your life stories, go here to make your reservation for an interview.
And to listen to a few stories from around the country, here is the StoryCorps Link. Everyone has a story to tell, and listening to some of these recordings is fascinating. You can even buy a book of interviews (see last paragraph below for details).
The interviews result in a three to four minute verbal story. To give myself some structure in preparation for telling my story, I wrote this, which I have titled "ONE DECISION." It is factual, and I have taken out close to forty years of emotion in order to capsulize what I want to say in this message. Here is my NPR story:
This is about a decision made after the birth of my physically handicapped daughter in 1970. The doctors attending to her in her first hours of life gave her father and me the decision of either doing no medical intervention with her death imminent within a few painful months, or to immediately begin intensive medical treatment. The physicians left the room with this question to be answered by us, young people in college, working, never having planned on being parents, much less to a child with grave problems.
We were advised there was no guarantee of success in any way relating to her quality of life. My husband’s inclination was to let nature take its course and not intervene medically: we were young and we were not through with our formal education, and since she probably never walk, her life would be very difficult for all of us. (I was a sophomore in college, and we were both taking as many classes and working as many hours as we could to help defray student loans and living expenses.)
But the path we chose, and the decision made, was to start trying to save her life immediately. We decided to let the doctors do what they could for her.
And she lived. And she grew up, although most of her adolescent and adult years were spent hospitalized due to shunt malfunctions and systemic infections.
There are more than a few ironies in this story. One was that Julie’s father and I both DID finish our educations (he got a PhD and I have a Master’s degree). So her life did not hamper that goal. And another irony is that Julie’s father died of cancer over twenty years ago, while Julie is still living today.
Which is not to say that over the years, her life has been extremely happy or in any way carefree. She has had over one hundred surgeries relating to complications brought on by her birth defect. She has been depressed to the point of trying to end her own life; she had virtually no childhood friends her own age.
In a few weeks, Juliet is facing another very serious operation. She has been in bed the better part of three years with skin ulcerations and infections. But in spite of the heartache, there have been positive, bittersweet successes…
1: She has worked for as a receptionist and lived alone, using public transportation to get her to and from work while in a wheelchair;
2: Julie completed high school and then college with a four year degree -- this in spite of many long months of hospitalization;
3 : Julie has resided independently both as a single and married woman;
4: Julie has maintained an eleven year long, loving marriage to a man having the same handicap of spina bifida;
5: She moved across country from her native state, and then she and her husband built their handicap accessible home five years ago on land which he husband purchased many years ago as an investment;
6: She (and her husband) are members of a strong faith-based Christian community. I’m told they are of spiritual importance in that church group;
7: Julie aspired to be a journalist, worked at a local newspaper as a college intern and had several sequential articles published. She currently writes to the editor of her local newspaper in South Carolina, expresses her opinions (especially about the problems that handicapped people encounter), and has had her letters published in the Charlotte Observer;
8: She and her husband are the loving owners of an eight year old frisky Yorkshire terrier;
9: Julie is a loving, generous, stubborn, sweet person with an amazing coping mechanism of denial.
She has become the person she is, in part, because of caring adults coming into her life by way of a loving family, excellent medical care, good surrogate fathers, a decent education, mental health assistance, the religious community, paid caregivers, and adult friends. And her own will to live and thrive are, of course, part of her essence.
And so all this has happened, at great financial and emotional expense. Her determinism and desire to keep living came out of ONE DECISION years ago to proceed with medical intervention. Julie's life has played out in far reaching ways that I cannot fathom. But it MUST have been the right decision to try and stave off hydrocephalous and infection in those first hours after her birth, because all of the lives she has touched have been significantly, and I believe positively, changed by knowing Juliet.In a nutshell, this story is about perseverance and love, and how each person's life is important and part of the structure behind the doors where we live. Maybe more than a few will find it a valuable listen.
A compilation of NPR Story Corps stories can be purchased here.