Читать книгу Blink Spoken Here - Christopher Pendergast - Страница 8

Introduction

It was not a dramatic event like a building collapse but more a steady deterioration similar to bridge failure. I was imploding. In 1993, my physical presence began shrinking before my very eyes. My contact with the world was severing, one function at a time. Angry, scared and saddened I was like a stubborn mule fighting with tenacity for each inch I surrendered. First it was dressing, followed by grooming, driving, toileting, walking, feeding, and breathing. Now I cling to my last vestiges of talking. It forced me to retreat towards within. The exterior husband, father, and friend was left behind.

Rene Descartes said, “I think, therefore, I AM!”

Even though now deep within, let there be no doubt. “Though I am statuesque in appearance, I am still flesh and blood. I am not a vegetable to be stored or pitied. Don’t ignore me by talking to my wife as if I cannot understand.” I proclaimed.

“My husband is a man with ALS, he is normal in every other way,” Christine tells people.

Amyotrophic lateral sclerosis (ALS) is a devastating neuromuscular disease. By misfortune, it selected me as one of its victims. My life changed forever with the diagnosis. I felt compelled to write about my experiences and thoughts living with this unwelcomed interloper. When I shared some of my work, people’s reactions were universal: write a book. I dismissed the notion as obligatory flattery. I continued trying to live and work teaching with my grim companion rather than resign to accept the death it promised. As I did, I wrote. First, I typed normally on my knock-off Apple II e, then with an adaptive device allowing my hands and arms to glide over the keyboard. Following many years, I graduated to use a head mouse controlled by infrared reflective dots taped on my forehead to choose the letters. Finally, I resorted to the eye-controlled device I use today.

Time passed, our path zigzagged, the number of stories grew and the accolades amplified. My writings eventually morphed into this book. My wife helped me write it with honesty and frankness about this brutal killer. I told the joys and blessings it brought us. I talked of hope and faith. I also revealed the terror, worry and torment it wrought on our family. These writings comprised our life experience for the past twenty-five years. To the best of our memory, they are accurate with my wife providing much of the specific details.

I divided its forty-four chapters into two sections, one reflections and stories from my personal life in the order I was inspired to write them. The second part chronologically details our advocacy work beginning with a fifteen-day wheelchair odyssey from Yankee Stadium to Washington, D. C. This section explains raising over eight million dollars and founding the ALS Ride for Life organization.

Aside from receiving the diagnosis of Lou Gehrig’s disease, The ALS Ride for Life is another of my life’s seminal events. Stretching over the last quarter century, it began with the Ride to Congress in 1998, launching my public advocacy life. I have been riding my chair ever since, over 3,000 miles.

I was born to be a teacher. I hope our book informs and inspires the reader. My wife and I will continue trying to cope and live productive, happy lives with our children and grandson. In the process, I will continue to teach.