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Framing a Photo of Lou Gehrig's Disease
By Captain Eric H. May
June 03, 2007
The Texas ALS veterans and supporters meet with Congressman Gene Green (D-Houston).
People say that a picture says a thousand words, and the one about which I write says at least that many to me every time I look at it. Taken in the halls of Congress on May 16, 2007, it portrays nine Texans, each of them connected with ALS, the lethal condition best known for killing baseball legend, Lou Gehrig.
The ALS Background
Amyotrophic lateral sclerosis (ALS) is a neuromuscular disease that causes the gradual but incessant wasting away of the muscles. It commonly starts with the limbs, impeding mobility. Next it typically moves to the bulbar muscles of the face and throat, impeding speech and eating. Finally it afflicts the pulmonary muscles, impeding breathing itself. The sum of the disease’s many impediments is an ever-deepening paralysis that results in death. It is a relentless boa constrictor, coiled in mystery, and no one has found the secret of its cause or the safety of its cure.
The statistics of ALS are as grim as the description. Half of those diagnosed with it are dead within 18 months; four out of five are dead within three years. The only drug proved to slow the disease, Rilutek, is expensive, and it only extends life span by 10 – 20 percent, which translates to three to six months. ALS afflicts men twice as often as women, although its incidence among women increases with age, so that by retirement time both sexes have the same chance of getting it. It’s most common in those who have passed 50, although it can strike those as young as 25. Generally, the younger you are when you get it, the longer you last.
Dr. Justin Kwan, my neurologist, is at the top left of the photo, and I’ve learned most of what I know about the disease from him. Prior to joining Baylor College of Medicine, where I met him, he served in the Veterans Administration hospital system, where he learned a little-known fact about ALS: It is twice as likely to occur among veterans as it is among the non-veteran population. Curiously, it doesn’t matter what kind of veteran you are, whether you saw combat or didn’t, whether you were on active duty or in the reserves, or whether you were in the Army, Navy, Air Force, Marines or Coast Guard. For reasons of its own, ALS simply prefers people who have worn the uniform of their country. Three of them are represented in the photo: Navy Lieutenant Kurt Goeser, Marine Corps Major William Patrick Teichgraeber, and me, Army Captain Eric May.
ALS Veterans
Lt. Goeser, 43, is a doting husband and father of two (ages 5 and 6), and he is seated in the wheelchair to Dr. Kwan’s right. He graduated from the U.S. Naval Academy at Annapolis, Maryland, before entering the Navy in 1986, and afterwards served in the first Gulf War. A resident of Austin, he enjoyed storming up and down the wavy terrain of the Texas Hill Country on his racing bicycle before he was diagnosed with ALS in the fall of 2006, as I was. Before, the May, 2007 ALS Association conference in Washington, D.C., we had only met once before. It was in Houston, in the winter, and at that point he was using a cane in his left hand and a staff in his right as he struggled to walk. His arms, which held those tools half a year ago, are still strong, but his legs have since failed, and now he lifts himself out of the wheelchair with his arms when he wants to move to another seat. Kurt’s sister, Susan Gilbertson, stands behind him, emblematic of the thousands of ALS families who stand behind those who can no longer stand.
Maj. Teichgraeber was quite an athlete, his widow Alison tells me, and it is to his prowess that she attributes his relatively long survival. Diagnosed with Lou Gehrig’s disease in 2001, the career Marine held out until 2004 before succumbing at the age of 40. His two sons, Matthew (12) and Justin (9), stand by their mother at the right of the photograph. They now live with her in their father’s hometown of Houston, Texas. Shortly before the Congressional meetings memorialized by this photo, the Teichgraeber family had a much more personal memorial: They visited the husband and father they described as their "fallen hero" at his gravesite, in Arlington National Cemetery.
I’m in the middle of the photo, seated in a wheelchair from which I am barely able to rise unassisted on the strength of my two much-weakened legs. A year ago, when I was 46, ALS attacked my arms first, and it was because of their weakness and shaking that I went to the neurologist who pronounced sentence upon me. Like Lt. Goeser and Maj. Teichgraeber, before I became ill, I was famous for physicality. A black belt instructor of Tae Kwon Do, not too long ago I as teaching my son and daughter the kicks, blocks, and punches of the art. In 2004 and 2005, I won Texas state titles in weapons competition, using a six-foot rattan long staff, one of many in my collection. Now it lies with the others on the floor of my home dojo, unused and dusty; I can no longer lift it.
ALS Supporters
My wife, Gretchen, is standing behind me. She has stood behind me every day, without fail, since October 2, 2006, when we received the awful verdict of ALS. When we married in 2002, we took our honeymoon on a "bicycle built for two," riding our tandem 1500 miles from the Gulf of Mexico to the Grand Canyon. Back then I joked with her daily that I was doing all the work, while she was coasting. Life delights in ironies: Nowadays we still travel together, but I am no longer pulling her; rather, she is pushing me. Married on May Day, we just celebrated our fifth anniversary; like all ALS spouses, she is making the transition from spouse to nurse.
Congressman Gene Green is behind me, too. In fact, the Houston Democrat says he’s behind all of us who struggle with ALS, and that’s a comfort to know. At present Lou Gehrig’s disease receives only a fraction of the federal funds allocated to other diseases, such as AIDS. I smile to see that Congressman Green has aged little in the 10 years since I met him, when I interviewed him as an NBC editorialist in our hometown of Houston, Texas. Agelessness is a politician’s skill, it seems, and I wish I had the knack. He’ll need all the strength of extended youth to do battle for us, since funding for this warriors’ disease is hard to come by under the administration of this war president.
Behind every photo there is, of course, a photographer, and the one credited for this one is special: Linda Richardson is the board president of the ALS Association, Greater Houston Chapter. She has been involved in the cause for four years now, inspired by the struggle of a friend with the illness. Acquainted with hundreds of ALS patients, her experience is both extensive and intensive, and she has become a sure friend for all of us. The activity and activism of leaders like her are cherished weapons in our struggle to find the cause and cure of Lou Gehrig’s disease.
From Us to You
Let’s hope that you never enter the frame of our ALS photo. While the odds to getting it are only three in 100,000 per year, the odds to getting it within the decades of years making up adulthood are one in 1,000. This makes ALS an uncommon disease, but not really a rare one. Most Americans can find ALS somewhere in their circle of family, friends or acquaintances. Thirty thousand of our fellow countrymen live with it at present. Six thousand new cases are diagnosed annually, matched by 6,000 annual deaths. Translated, that means that every 90 minutes a new family learns what ALS is, and every 90 minutes another family joins the community of mourners.
Captain May is a former Army military intelligence and public affairs officer.
©-free 2007 Adelaide Institute
