Dudley Clendinen, a former New York Times national correspondent and editorial writer, chronicled his experience with amyotrophic lateral sclerosis. Many call it ALS. Others Lou Gehrig's disease, in honor of a New York Yankee who died of the disease in 1938.
Dudley offers a first-person perspective of Lou, as he calls it. Reading his chronicle, it is clear, the it is really he. Dudley's intimacy with Lou is worthy of our embrace.
Some are choked up to read of the final curtain call, which befalls the individuals intimate with him. Three people come to mind, known to me, who live with or have died at Lou's hands. I would lie to exclude myself from being choked up about Lou.
Yet, reading Dudley's commentary in today's New York Times calls me to reflect. I am aware of life's realities. Dudley says, "I sometimes call it Lou, in its honor, and because the familiar feels less threatening." I understand. Whether it be confronting a condition personally, or facing the condition in relations with other human beings, familiarity with--intimacy with--the condition is vital.
I have lived with cerebral palsy since my first breath. I have known no other intimate companion. Epilepsy seizes me at times, when I abstain from my anticonvulsants' commands for me to take. Yet, when I awaken from the seizing moments of my life, I am left to humor my cerebral palsy. I must not abbreviate her presence in my life by calling her CP as a means of escaping the realities she presents to me daily. I respect the abbreviation of--the calling of--her as CP by her other intimates.
Yet, I am challenged enough to maintain my own balance, without taking on responsibility of another individual, however similarly conditioned they may be. Two years ago, chemical imbalances seized my clarity of thought. While navigating my life through the clouds, I was informed of a stunning reality. Cerebral palsy accelerates the aging process.
My lifelong understanding was that cerebral palsy was not a degenerative condition. Yet, accelerates the aging process was not synonymous with degenerative condition. I confess, I am not faced with the prospect of being choked by my cerebral palsy. Yet, I do endeavor to understand the distinction between accelerate and degenerative.
Accelerate is derived from accelerare "to hasten, to quicken," from ad- "to" + celerare"hasten," from celer "swift." Whereas, degenerative is derived from de + genus (gen. generis) "birth, descent." Figurative sense of "to fall off, decline."
During the nine days when my anticonvulsant imbalances were addressed, my understanding of degenerative in its figurative sense was accelerated at lightning speed. As contrary as it may seem, striving to compete with the speed of others differently conditioned than I was no longer the point of my life. It couldn't be. The price to do so would have been too great--it would have driven me to my immediate demise. If I strive to exceed the boundaries of who I am meant to be--who I will myself to co-operate with God to be--then I am avoiding what is available for me to live.
As I say this, I recognize that this is far easier said than done. I have yet to accomplish living what is within my boundaries to live. For this reason, and to achieve this goal, I must return to two people's wisdom. Let me be clear, I am not speaking of imminent death for myself, that is not my point.
...we don't talk about how to die. We act as if facing death weren't one of life's greatest, most absorbing thrills and challenges. Believe me, it is. This is not dull. But we have to be able to see doctors and machines, medical and insurance systems, family and friends and religions as informative--not governing--to be free.
And that's the point. This is not about one particular disease or even about Death. It's about Life, when you know there's not much left. That is the weird blessing of Lou. There is no escape, and nothing much to do. It's liberating.
Reading Dudley's commentary, I am transported back to the words of my maternal grandfather--a mentor to me. He lived with us during the last few years of his life. While still quite lucid, he spoke words that guide my living yet today.
"When I die, don't be sad. I have made amends with everyone I have had differences with."
Returning to Dudley Clendinen, "the familiar seems less threatening," is essential to how I must live--to how I may thrive. On April 14, 2011, I took ownership of an Invacare FDX-MCG power wheelchair. Yet, that was not the first step toward my liberating mobility. Familiarity. Less threatening. These two qualities were essential to moving forward in my life. Thus, Zoomer was born. Zoomer moves me closer to other people, and other people closer to me. Mechanical parts take a back seat to the persona of a more active way of living--not faster than other people, rather, different from others.
I pray to be defined--guided--by blessing, making amends, familiar and less threatening. May we be attuned to--listen to--the sages in our lives--in our world.
