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Name: Barry Allen Coughlin
Hometown, State: St. Elmo, IL
Age: 44
Family:
None
Hobbies/Interests:
Sports, music, computers, movies, writing, history and politics
Date of ALS diagnosis:
June 11, 2001
Tell us about your life before ALS:
Professional Land Surveyor licensed in Florida and Illinois. President of Darrell E. Gerken, professional surveyors and mappers in Sarasota, Florida. Loved to play golf and was an avid backpacker. Conservative in politics and a capitalist in business. Always concerned with appearances and the bottom line.
Tell us about your life with ALS:
Much more laid back, carefree, take the world as it comes one day at a time. I’m more social politically, economically and personally. I’m a better person.
Tell us how ALS has brought new significance to any aspect of your life - family, attitude, hobbies/passions, career, etc.:
I have had the opportunity to spend more time with my family than I would have in 20 years. I see things differently, much clearer, as if the meaning for my life has been revealed. New hobbies and talents have been uncovered. I enjoy life, even mostly paralyzed after 6-plus years of ALS – more than ever. I’ve been given what I thought I already was – the awesome task of being a role model and inspiring people just by enjoying life.
List your favorite quote: “A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses.” – Hippocrates
Do you have a “life motto” or “profound words to live by”: Life is good, love what you do and do what you love.
Has there been an “a-ha!” moment or a specific turn of events that has helped you live with ALS?
It actually happened just before I was diagnosed. Backpacking during the year preceding my diagnosis prepared me for a life with ALS. My first overnight trip I was loaded with everything I “needed,” to the tune of 60-plus pounds. I was prepared for anything. I carried a first-aid kit that had everything but a defibrillator. Batteries are heavy! It didn’t take long to realize I had taken on more than I should have. Each trip afterwards I packed smarter and learned that comfort comes from within, not what you carry. My last trip (I didn’t know it at the time) my pack weighed in around 45 pounds for a 4-day, 3-night hike. My burden was manageable.
When you are young and inexperienced you load up, unknowingly putting yourself at risk. But you comfortably carry your weight with the ability to help others. As you get older, you recognize the risk in being overloaded. The load gets heavier and harder to carry. To avoid the load turning into a burden, you must pack and carry smarter. Eventually there comes a time when you have to leave some things behind to lighten your load. Acknowledging when to lay your burden down can be difficult, but can be a lifesaver.
Applying this to living with ALS has helped me to live life instead of waiting to die. This is what backpacking teaches you; pack smart, simplify and lay your burden down.
Is there anything else about you and/or ALS that you want to share with people who read your story?
Don’t wait to do what you love while doing what you feel you must. Use your health wisely; it’s a commodity with an ever decreasing return.
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