There was no warning nor time to prepare. I knew nothing of the horrendous disease embedded in my DNA, OR WHAT IT WOULD DO TO my body. At the beginning of the month, I was free and happy, enjoying life with my six-month-old son. By the end of that month, the genetic time bomb had exploded. I was left as a mind trapped in a useless body. I struggled to keep my sanity, despite the great losses I suffered.
At this lowest point, I was totally blind, completely deaf and paralyzed in my feet, legs and hands. I couldn't walk. I couldn't feel anything. I was unable to take care of myself, much less my baby.
The worst part was the lack of access to information. I didn't know what was going on around me or out in the world. Sports, culture, business, politics and wars continued. As they say, "Life goes on." I knew nothing about it. I existed in a state in which I only knew what people deemed to tell me. Since communication involved printing letters on my face with a fingertip, that was very little. It was too much work for my family to keep me informed.
I spent endless hours, days and months trying to entertain myself with my own thoughts. I imagined I was watching my favorite movies, tried to remember the lyrics to old songs and recited books back to myself. I was so isolated, lonely and miserable. I lost all contact with the outside world and so desperately wanted to get back in touch.
After eight long months, I realized my hands were beginning to heal. It took another three months before I regained normal sensitivity in my fingers. I knew at once what I needed to do. I had to learn braille.
I was another lost one who fell through the cracks in the vocational rehabilitation system. They claimed I was too disabled and therefore beyond their help. I received no services and had no trainer. If I wanted to learn braille, I would have to do it myself.
My husband bought a braille learning book online. I didn't have much support at home, so I was literally teaching myself. I carefully followed the lessons in the book. After I studied each new letter, I worked on practice words and sentences. After one month, I could read uncontracted braille. It was time to move onto the next level.
The training series for contracted braille was longer and harder. There were so many rules and so much to remember. I struggled with short-form words, abbreviations and beginning and ending contractions. I worked every day on reviewing information and learning new skills. After three months, I could read contracted braille, although my pace was quite slow.
I've been told it's impossible to learn braille that fast. Yet, that's exactly what I did. I was so determined to return to the real world. Braille was the only means to do so.
Harry Potter and the Sorcerer's Stone was the first book I read in braille. As I diligently felt the dots, I became so excited. Letters turned into words. Words became sentences. I recognized the story. I was reading!
My next step was to find sources to news. I signed up for "Hotline to Deaf-Blind," which sent weekly braille briefings about headline news stories. From the national library, I ordered "The New York Times Weekly" and "Parenting Magazine." Other sources gave me access to "The Reader's Digest" and "Syndicated Columnist Weekly." Hope returned to my life as I read these magazines. I was proud to talk politics with my husband or discuss a story he hadn't heard about. I was back in touch, thanks to those beautiful dots we call braille.
Now, 10 years later, I've had some training to refine my braille skills. I read much faster now. That's essential, because there's so much I want to know about. I spend most of my day reading news and books. I could live forever and still never finish everything I want to read.
The purchase of my first Braille Note device provided even more access to information and social networking. I could email my family, join deaf-blind mailing lists and meet new people who faced similar challenges. I began surfing the web for the first time in my life. I had never imagined so much information in one tiny place. There was so much knowledge to be had, and it was all at my fingertips.
I now have a Deaf-Blind Communication device. This machine allows me to talk with people who do not know sign language. They type on my cell phone, and I read the message on my Braille Note. The device also gave me access to a TTY. I'm finally able to make phone calls by myself. My son and I celebrated the night I first ordered a pizza for our dinner. Once again, I owe it to braille.
I'm connected to people through text messages, Instant Messages and Facebook. It is amazing what technology can offer these days. I love reading on a refreshable braille display. The dots are like magic. At a push of a button, they change to say something new. The possibilities are endless.
I'm still deaf-blind and physically impaired. However, I'm no longer a prisoner in my own body. It was braille that allowed me to escape. Now I'm a student, a writer, a leader and friend. My online nick-name is "Dot." I'm an actual part of society again. This never would have happened without braille.
I've been asked, "What does braille do to enhance your life?" My answer is simple. "Everything." Braille keeps me in touch.