When it Hits Home

My Anatomy teacher Senior year of high school read us Tuesdays with Morrie.  That was the spark that lit the fire inside. My Senior year of high school, a co-worker's brother was diagnosed with ALS.  We joined in on the Nashville Walk to Defeat ALS that year, and Mr. Walker walked with us; his spirits were high, he was going to tackle the disease.  My freshman year of college,  he was in a wheelchair and didn't (that I recall) make it to the walk.  The next year, I made it our honor society's philanthropy for the year.  I had twelve people walk with me, but we raised over $400!! That year, we were missing a teammate, though.  We walked with heavy hearts as our walk in honor of Mr. Walker turned into a walk in memory of him. He lost his battle in 2011.  

 

Patients are given 2-5 years to live.  As they finish their lives, knowing there is a definite end, their bodies lose the ability to function, piece by piece.  ALS is a neurodegenerative disease that impacts the nerves in the brain and spinal cord. 

 

ALS hits home for me.  I have been critical during the ice bucket challenge, because to me, the videos have become a game of tag.  I posted this article on Facebook, and said these words:

 

I enjoyed this piece, and it has been on my mind a lot this week. The author is right - there is very little information in these videos about the disease, where to donate, and why people should be donating! My passion for the organization... was sparked my senior year of high school when Tuesdays with Morrie was shared with me for the first time (Thank you Ms. Royal!). Since then, I have had the honor of working with the ALS Association of Tennessee in honor, and then in memory of Willy Walker. He was the brother of one of my former co-workers who was diagnosed with ALS, and sadly lost his fight. ALS, or amyotrophic lateral sclerosis, is a degenerative disease in the nerve cells of the brain and spinal cord. Those with ALS slowly lose control of their motor skills and become paralyzed. It is hard to watch someone so able-bodied become unable to wiggle their fingers and toes, unable to lift their hand to shake yours, and then unable to walk. It is hard to have someone walk with you in his own honor with all of the gumption in the world, and then be wheeled in a wheelchair in his own honor, and then be the memory for whom we walk. There is no cure, but donating brings us closer and closer. I am in awe of how quickly the "Ice Bucket Challenge" has spread, and it is a wonderful example of the power of social media. However, those videos have to be more than videos. If the videos are coupled with the donations they promise, as many have been, the cure for this disease will become more attainable. Go to alsa.org and read about the disease, learn about what researchers are doing to come closer to the cure, and donate what you can. I am thankful for all of you who are taking the challenges and raising awareness for what has been called a silent killer. You're changing lives!

  I was quickly reminded (by my darling husband, no less) that it isn't all about the money. Yes, the ALS Association has raised 15.6 Million dollars, and research can't continue without the donations. However, it is also about the awareness being raised for this silent killer.   This morning, I found this video, and it backed Jackson's opinion 100%.  I posted this statement in reply:  

Yesterday, the article I posted miscommunicated some of my feelings toward ALS and the ice bucket challenge. First of all, I support the challenge and love that it is raising awareness on the disease. If I were to be challenged, I'd gladly accept it and post it alongside so many I have seen. I supported the article's stance behind the content of the videos. They have to be more than a game of tag. They need to be informative; they need substance. ALS is called the silent killer because few know much about the disease. I will say that I am sure that some of the uneducated people saw the videos and took it upon themselves to do research, but I don't know that. My point with the article from yesterday is that the videos need to tell about the disease, they need to talk about how debilitating it is and about the fact that it is a terminal illness with no cure. The videos also need to talk about where to donate. I haven't seen any videos that talk about where to donate, and there are PLENTY of places to do so (alsa.org).

However, I understand, more so now than yesterday, that it is not 100% about the donations. I didn't mean for it to sound like I was more concerned about the donations than the awareness; however, the research cannot continue on awareness alone.

After watching the video below , I understand the importance of the ice bucket videos, regardless of how informative they are, regardless of whether the person donates or not. They bring joy to the hearts of those with ALS. The patients now know someone is on their side and that they are not alone. Thousands of supporters are with them, encouraging them and uplifting them in the hardest moments. My heart is jumping for joy because people like Willy Walker and Pete Frates and Ed Dobson (edsstory.com) and thousands of others now have the voice that has been or will soon be taken from them.

   I would love to hear your thoughts on the challenge, the disease, and your questions. If you would like to donate, you can donate to our team here or donate to the organization by going to alsa.org!