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Weekly Wisdom 8-10-2016

The Tragedy of ALS

About 25 years ago, my sister in-law, Charleen Thrift Layman, died from amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease.  According to the National Institute of Neurological Disorders and Stroke, ALS “…is a rapidly progressive, invariable fatal neurological disease that attacks the nerve cells responsible for controlling voluntary muscles (muscle action we are able to control, such as those in the arms, legs, and face).” It goes on to explain, “ALS does not affect a person’s ability to see, small, taste, hear, or recognize touch. Patients usually maintain control of eye muscles…”  So, technology allows them to communicate using eye movements and a speech-generating device.  Charleen was a flower-child from San Francisco; competent emergency room nurse at Overlake Hospital; loving mother of three (the youngest was only five when she died); loved to wear fancy clothes and drink good red wine.

Famous people with ALS include:

Quote: "Better to lose count while naming your blessings that to lose your blessings to counting your troubles." Maltbie D. BabcockLou Gehrig: American Baseball player who, during his career, his 23 grand slam home runs which still stands today. He was confirmed to have ALS on his 36th birthday.

Professor Stephen Hawking: Along with Roger Penrose, he has shown that Einstein’s General Theory of Relativity implied space and time would have a beginning in the “Big Bang” and end in black holes.

Jason Becker: Guitar player who toured with David Lee Roth’s band in the 1980s. He still remains mentally sharp and composes with a computer.

Steve Gleason:  Former professional football who
played at Washington State University. He is best known for blocking a punt in a 2006 game while playing for the New Orleans Saints. This occurred right after Hurricane Katrina and became a symbol of hope for the city.

Steve Gleason is actually who got me thinking about ALS this weekend. There’s a new documentary, Gleason, about his life. He was diagnosed with ALS in 2011; today he is only 39 years old. Weeks after her diagnosis, his wife, Michel Varisco, found out she was pregnant. From The Seattle Times: Knowing that time was of the essence, Gleason started making video journals –love letters, really – for their unborn child. He recorded himself reading children’s books, talking about religion, love and even how to build a campfire. When his disease progressed, the couple hired cameramen…to pick up the slack.  The two lived with the family for five years.

In that time, they collected 1,300 hours of film that was structured and edited…The film captures doctor’s appointments; the growth of the couple’s son, River; Gleason’s tracheotomy and stem-cell surgeries; meetings of the couple’s foundation, Team Gleason; and one difficult scene when Gleason’s fundamentalist father, Michael, brings him to a healer.

Just imagine. I have to admit, I don’t know if I could do it. But what else could you do? It gives me pause to think about how lucky I’ve been in my life. Thanks to Steve Gleason I’ll count my blessings more often and use my voice for good. At least for a while.

- Staci Sleigh-Layman

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