Wealth, ALS Awareness, Reality and Hope

I read a blog piece yesterday that caused several visceral reactions - and it also caused me to think. 

The author's premise was that the face of ALS awareness is commonly associated with individuals like O J Brigance, Steve Gleason, Augie Nieto and Mike Porcaro. All of whom have net worth above the norm and who have started organizations to raise funds and awareness for the disease and for research. The author makes the case that, because these individuals are wealthy, they put a false face on the "normal" life of an ALS patient and the ability to remain active. He then goes on to list in stark and accurate detail, what happens in his and thousands of other ALS patients lives every day.

As a sidebar, let me emphasize that I have no issue with the author or the blog article. It's a well written and thoughtful piece. It just comes from a place of desiring to point out the harsh reality of living and dying with ALS. A much needed and often overlooked perspective that unaffected people turn their eyes away from. ALS isn't pretty.

The individuals named above may use their wealth to enhance their own lives - ALS is an expensive disease, especially if you are a slow progressor like me. But these guys have also used their wealth and celebrity to help others. 

The author also makes a statement, and I have the utmost respect for this most personal decision, that he doesn't "want to be hooked up to a machine merely to survive.". He's referring to being "trached" or "vented" after breathing on his own becomes impossible.

And that, I guess, is where my visceral reaction came from. Linda and I started The Hope-JG Foundation on a shoestring. We aren't wealthy nor do we have the kind of celebrity that comes from playing in the NFL, being a self made millionaire or a rock star. We're just a family with ALS who chooses to hold on to Hope. Hope that we can make a difference in the lives of others. Hope that staying engaged and active will be a distraction from the list of daily struggles every ALS family faces - including ours.

But it's not just Hope. We are secure in our knowledge of facts we've discovered over the past seven years. Fact: Technology can make a huge difference in the lives of the disabled. Fact: Hope isn't a Hallmark card catch phrase. It's a tangible, very real anchor to hold onto, if you believe it. The "dark side" of ALS the author refers to IS reality. But it's a reality the light of Hope can penetrate. It doesn't make the tough stuff easier. It certainly makes it more bearable.

The ALS,Residence concept,isn't just wishful thinking. It's a proven model for living with ALS, MS and other neurodegenerative diseases with Hope, dignity and a level of social connection far beyond what the traditional nursing home model can offer.

For us, it's not about celebrity or fame. It's about doing what is right because no one else is doing anything. Join us in bringing an ALS/MS Residence to Maine.

http://www.hope-jg.org/#!projects/c21kz