Nickie Coby (puppybraille) wrote,
Nickie Coby

Celebrating Reading

About two months ago, I received a call I didn't expect. That's nothing new, but this one came just when I needed it. I was in the hospital with an uncontrollable migraine. I'd only had the spinal cord stimulator for about ten days, and was feeling a deep sense of despair. The call was from someone at the
National Library Service for the Blind and Physically Handicapped
assking if I would be interested in speaking at the 80th birthday celebration of the program.

Needless to say, I was thrilled. I was excited and ready to speak. I wanted to share my story, it was an opportunity I could not pass up. It was the encouragement I needed to keep going through the un-relenting pain of the migraine. Anyway, I said yes, and on March 3rd, I found myself at the Library of Congress, speaking about my experience and even what it's like to hear a book, your
recorded and the impact this has had on my life.

I wasn't able to record the proceedings, but I do have a copy of my speech in text format. I'd love to share it with you readers:

As a recipient of Talking Books for over 20 years, I'm pleased to be here for this historic milestone! I'd like to discuss some of my favorite books, which range from mysteries, to romance to non-fiction accounts of healing and hope, and share a more compelling story; the story of how the Talking Book program changed my life.

My favorite mysteries are written by Tess Geritsen, the program has several of her books and it would be difficult to choose a favorite. In the romance category, I enjoy books by Dannielle Steele including Honor Thyself, Accident and Amazing Grace. It is wonderful to be able to discuss these popular books with friends. In the non-fiction realm, I focus on books which inspire me, many of which talk about healing or living well with illness or disability. Some favorites include: The Anatomy of Hope by Jerome Groopman, Life Disrupted: Getting Real About Chronic Illness in your 20's and 30's, by Laurie Edwards, Miracles Happen by Brooke and Jean Ellison and I am the Central Park Jogger: A Story of Hope and Possibility by Trisha Meili.

I am an active member of the American Council of the Blind, and through that organization, I gain advocacy skills and meet wonderful people. One of them is Mr. Cylke; through his help, my book was produced in Talking Book and Braille formats. This allowed me to reach many readers who would not otherwise be able to access it. My book, Nickie's Nook: Sharing the Journey is about my journey as a person who is blind, a college student and a person with chronic pain. I describe the challenges I face when my blindness and chronic illness combine.

I will never forget the day I first read my own book in Talking Book format. While I had enjoyed the feel of the print book in my hand, it did not seem real to me until I heard it read by a Talking Book narrator. I nearly wept for joy.

In my book, I mentioned fear of a surgical procedure which could possibly relieve my pain, but which I was not certain would be safe or accessible for me or my Guide Dog Julio. In essence, the surgery implants a device called a spinal cord stimulator near the spinal cord to replace the pain with a tingling sensation. I feared I would be unable to operate the device without sight and that the tingling would interfere with my ability to feel the ground, an important task for someone with a Guide Dog.

Through the Talking Book program, a man with my same nerve condition, experience with a Guide Dog and a spinal cord stimulator read my book and contacted me by email. He alleviated my fears regarding the stimulator and we became friends. After eight years of treatment, my doctor told me my only option for pain relief was the stimulator. I would never have had the courage to undergo the procedure without the help of the Talking Book program.

The surgery worked and for the first time in eight years, I have excellent pain control. Thanks to the Talking Book program, I can now focus on living like any other 24 year old and I can read some wonderful books. The program enhanced my life.
Tags: accessibility, blindness, chronic illness, chronic pain, college, disability related, life milestones, my writing, spinal chord stimulator, stories with a point, success stories, surgery

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