Amyotrophic lateral sclerosis (ALS) was broadly introduced to the world in 1939 when the Iron Horse of Baseball Lou Gehrig was diagnosed with this progressive neurodegenerative disease. Motor neurons that reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body are affected, impairing the ability to use the hands and feet, speak, swallow, and breathe. The ALS Association website has more information.
I’ve been learning about this disease because two of my friends have been diagnosed with it recently. It feels extra shocking to me because the incidence in the general population is supposedly only 2 in 100,000, yet my town is smaller than that and there are many more in my area living with the disease.
I read the highly recommended memoir, Tuesdays with Morrie by Mitch Alborn, the true story of Morrie Schwartz and the weekly conversations they had together while Morrie managed his ALS diagnosis. Tuesdays is excellent because Alborn was able to capture Morrie’s hard-earned wisdom about life, death, and humanity and share it with the world.
As Alborn learned from his weekly chats, spending time with people who know they are dying brings great gifts. I am reminded to live each day more fully, to appreciate the people in my life, to be thankful for my health and circumstances, to cherish each moment in its own right, and to let go of the little things that don’t really matter. I also regret not spending more time with these friends before their diagnosis. I always thought there would be more time. All of these get thrown by the wayside while I’m rushing to and from the kid’s school and the grocery store, feeling exhausted and behind in every task.
Spending time with my friends who have ALS releases my petty disappointments and frustration with the day-to-day. The concerns melt away like sand through my fingers after only a few minutes with my friends. For their time and candor, and the clarity it brings me, I truly thank them.
What I’ve learned about ALS so far:
- The disease is poorly understood and there is still no known cure.
- ALS is not wholly inherited genetically. It may be affected by environmental factors and can strike anyone.
- Most people diagnosed with ALS live from 2-10 years after diagnosis, with some exceptions.
- A couple of drugs are in clinical trials that could slow the progression of the disease.
- Donations can be made to support the search for a cure at The ALS Association.
If you know someone with ALS, spend time with them. Listen and learn. Cherish every person in your life and every moment. Then make a donation so that someday, ALS will just be an entry in the history books.