Chris and I met in 2006 at Johns Hopkins University in Baltimore, where I had been invited to address scientists working on a cure for ALS. I said that day that I believed ALS would be cured in my lifetime. I still believe that. But I also pointed out, sadly, that Lou Gehrig had believed it, too, when he was diagnosed in 1939.
Gehrig’s story is the stuff of tragedy—baseball’s strongest man inflicted with a fatal disease that wore his muscles away. But there’s beauty in it, too, because the disease is forever linked to a man whose courage and optimism grew as his physical strength faded. Gehrig chose not to hide his illness from the public. He chose not to seek pity. He called himself “the luckiest man on the face of the earth” and meant it. And his courage proved contagious. He has inspired millions of people facing hardship to hold their heads high and to concentrate on what life has given them rather than what might be taken away.
In Blink Spoken Here: Tales from a Journey to Within, Chris shows he is a worthy heir to the Gehrig line. He may have Lou Gehrig’s disease, but he also has Lou Gehrig’s strength, Lou Gehrig’s love, and Lou Gehrig’s hope. To read his story is to share that strength, that love and that hope.
Jonathan Eig is the author of Luckiest Man: The Life and Death of Lou Gehrig.
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.
Part One
Stories and Reflections From Our Personal Lives
Celebrating Life
I wrote and named this poem for my Principal shortly after I returned to work after my diagnosis in 1993. I tried to capture my thoughts about God’s role in life, patience and ultimate acceptance. I hope he recalled it years later, when it was his turn to die. I hope that it brought him peace.
L’Chaim
Look! See the gossamer threads of our life sway to and fro.
They dance with the winds of fate. Sinuous wisps of ourselves:
writhing in unrehearsed undulation. Mystical and incomprehensible, they swirl about.
Introspectively, we strain to see their meaning.
We view them in a moment, a frozen frame. But, this very act errantly halts the procession. Peering into time, stuccoed and fixed, the strands lose their fluid rhythm.
Thus exposed, we can see only a tangled web of life’s travail. Painful and disparate.
Fear not…….but take heart.
This Gordian knot is but a moment’s twist of our gossamer threads.
The MASTER is working the loom, weaving the threads.
With patterns unfolding, it will become the beautiful mosaic of our LIFE.
Err not then! Look not and see only bare strands.
Look beyond, transcend the moment.
See the dance of the gossamer threads: beauty, harmony, and peace
In His time the weave will reveal its design; Clarity prevails and serenity abides.
Besides Christine (and of course, my mental health therapist, Dr. Philip Melnekoff), Gary was my closest confident. I met him when he became my supervisor as the Director of Special Services in our school district in the late 80’s. We were nothing alike physically. He was slender and slightly built. Gary was an impeccable dresser, usually sporting a jacket and tie. Most often, I was in jeans and maybe a flannel shirt. The only characteristic we shared were our beards. Even then, his black one was neatly cropped short while my reddish-brown one was long and wild - more like a mountain man than an administrator.
We were the same age and shared similar educational values. I liked him a lot. We clicked and worked well together. Dr. Burns, his official title, received an appointment as Principal of my school several years afterward. Working every day together, we grew closer.
His support during my long process of diagnosis was encouraging and helpful. When the crushing news of my diagnosis came, he became a rock for me.
“Take as much time as you need, Chris, everything will be taken care of for you,” he told me over the phone.
I sobbed back, “Thank you, Gary.”
In two days after finding out, I wanted to return to work. It was a diversion from reality. I loved my work and it was a joy to be with my kids. My return was emotional. Everyone knew my fate. It must have been a heartbreaking scene for everyone. A beloved teacher comes back for his final hurrah. He was going down fighting.
I bravely entered back into reality going back days after receiving my diagnosis of ALS, aka Lou Gehrig’s disease. I went directly to the office.
Gary and I hugged tight and long. I cried in his arms, “I didn’t want this,”
“Nor