[BobbyB]

Life and Breath, Letter to the Editor

ALS patients nation wide are being held hostage this Christmas by a Grinch on Capitol Hill. His name is Tom Coburn, Senator from Oklahoma. The Wall Street Journal posted the front-page article on Dec. 21st and detailed how this Senator worked late while others adjourned for the Holidays. His scrooge style mission was to place a "hold" on selected bills, a procedural maneuver that allows a single senator to prevent a bill from being passed quickly without a roll-call vote or floor debate.

The Registry Act would give the Center for Disease Control the authority to compile data on the civilian population currently affected by ALS. This data will provide a snapshot of ALS’s affect on Americans that we have never had. At present, S. 1382 has passed the House with a vote of 411 to 3. It has cleared the HELP committee chaired by Senators Kennedy and Senator Enzi Nov. 14, 2007 as written. The bill currently has 68 Senate signatures. I understand our legislature’s procedural thoroughness, and that some issues necessitate careful deliberation or partisan debate, but taking a step towards fighting ALS needs no second thought. I am a person coping with ALS, and I refuse to go quietly and allow Senator Coburn to walk out on ALS.

ALS (Amyotrophic lateral sclerosis), often referred to as Lou Gehrig's disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord leading to paralysis. Life expectancy after diagnosis is 2-5 years: those years are akin to hell on earth. ALS can strike anyone, at any time, regardless of age, sex or ethnic origin. The usual age of onset ranges from 55 to 65, but people under 20 have been diagnosed with ALS. My wife must now become my nurse and fulltime caregiver. The greatest cruelty of ALS is that it cuts life short before life is even over.

On the same day in May, two different statements were being made in Washington D.C. On Capitol Hill, ALS advocates, patients, and caregivers were meeting with Representatives from all states, and if Representatives were not available, we were greeted by staff aids. We had our finest clothing on and challenged the Hill in our mighty power chairs. We dressed nice in an attempt to be normal and the day was long and grueling with many retiring early from their demanding schedule.

Up the street west of Capital Hill, another ALS patient and advocate was challenging the White House all alone. A young filmmaker, Patrick O'Brien, was positioning himself for the ultimate statement on ALS. He was setting up for a black and white photo, nude in his power chair with the White House in the background. On his chest was written the words, "Every 90 minutes a person will die of ALS". His message was harsh—harsh for the President and certainly too harsh for the majority of my ALS friends.

This is not a game of Patty Cake but a matter of life and breath. I believe we have to take a different and serious approach. How will we ever be noticed if we continue to play dress up? We have played fair long enough and the time has come to expose the sad facts. People with ALS die. They die so quickly that there are far fewer of them in our midst at any moment in time. That doesn't mean that the threat of this disease leaves our midst.

In the words of 9 year old Emily Chamernik regarding her 37 year old mother Aimee. "My mommy does not read us stories anymore, she has a hard time talking. Someday soon she will die and me and my brothers will miss her".