You probably think I am about to write another awareness plea, but you would be wrong. Awareness is terrific, but isn’t it time to start turning from awareness and start expecting or, even better, demanding a much better A-word? ACTION!!!
For people who have ALS, and those who care for those with ALS, it is great that someone is aware of ALS, but quite honestly we’re growing weary of the accolades proclaiming our bravery or strength in the face of the ALS devastation. While we appreciate the caring words and sympathetic smiles, what we really want, what will make us truly happy, is for people to start taking action and start getting angry at the lack of progress toward a cure, as well as the severe hardships inflicted on the lives of those touched with ALS. The feeling is best summed up by the classic movie line in the ‘70s movie Network, “I’m as mad as hell, and I’m not going to take it anymore!”
This is in no way a reflection on the incredible work of ALS organizations like MDA or the tireless efforts of the many researchers, doctors, nurses, social workers, etc. who work so hard for a cure and to make our lives better. Some have questioned their paths of work over my nearly 20 years with ALS, but I haven’t because even if they have taken wrong turns, I know that their intentions are pure and their motivation unwavering toward a goal of eliminating ALS.
Nor is it jealousy over the vast resources thrown at other conditions, many neither terminal nor impactful for living a normal life. OK, maybe a little jealousy is involved when, for instance, you compare the obscene amount of resources thrown at male pattern baldness (I picked it since I am a member of that club, too) and the crumbs dedicated to ALS. I know, I know: ALS isn’t nearly as sexy (we bald guys are the epitome of sex appeal) nor as potentially profitable as a cure for male pattern baldness, but you would think a condition as utterly devastating as ALS (and other neuromuscular diseases for that matter) would get more love and attention.
Part of the problem is the number generally associated with ALS — 30,000. Even if you take this number of people with ALS at face value, which I personally don’t, the number is still extremely inaccurate since — unlike many other conditions, even terminal ones — ALS directly impacts more than those who have the disease because of its extreme level of devastation. Beyond dismantling someone physically down to a quadriplegic, it also financially causes devastation that, at the very least, affects the immediate family. It physically takes a toll on caregivers, as the effort and time needed for care increases as the person with ALS becomes increasingly disabled — which also takes a toll if the family has school-age children, since this directly impacts their lives as well.
Finally, the emotional devastation might be the worst facet of ALS. Yes, this is something that takes a toll in any health condition — but ALS is especially cruel. It’s not just terminal, it is a slow march toward becoming a quadriplegic. It starts with an incredibly slow diagnosis process where there are usually progressively severe possibilities presented at multiple steps along the way. In my case, it went from hyperventilation (that one just ticked me off) to a brain tumor to MS, and finally an ALS diagnosis after an agonizing nine months. It was actually sort of a relief, as horrible as the diagnosis was, just to get off the speculation merry-go-round — but then you get on the physical-decline roller coaster, which has way more downs than ups. This is where ALS, in my opinion, is crueler than many other terminal diseases.
My dad died of pulmonary fibrosis when I was 19, and yes, his death still affects me. But even though he basically had the disease most of my life before he died, it did not impact my life, his family’s lives or even his life substantially, until the last six months of his life when there was a rapid decline in his health. Even then, he never reached nearly the level of severe disability that people with ALS experience.
It is the near-relentless pace of significant changes from diagnosis through the three to five years before death or going on a vent that those of us with ALS, and those near to us, experience that makes ALS so different and difficult to explain to people who don’t have this daily experience.
This brings me back to my original point, which is that ALS is so encompassing of everyone’s lives within a certain orbit of the person with ALS that 30,000 is an inaccurate number of people affected. Using just my immediate family of five as an average number of people within the orbit of a person with ALS would turn the 30,000 number to 150,000.
ALS demands action by a doubling or tripling — or more — of the dollars dedicated toward direct ALS research to speed the progress toward significant treatments and an eventual cure.
ALS demands ACTION by government and insurances ending rules and regulations that make our lives with ALS much more difficult and stressful.
ALS demands ACTION by programs meant to give just a basic level of care, ending the requirement that we completely dismantle the lives we built before ALS and impoverish ourselves to receive it.
ALS demands ACTION on ending policies that push those of us with ALS into much more expensive institutional care — which shows both a lack of compassion and a lack of fiscal common sense — and instead helping us stay in our homes in the love our family.
No, I don’t think awareness is any longer good enough an A-word for ALS. The 100,000 to 120,000 people who have died from ALS in the 20 years I have had it cry out from their graves for ACTION! The 150,000 currently battling ALS in their lives plead for ACTION! The millions of fathers, mothers, brothers, sisters, children, extended family and friends touched by ALS implore us all to take ACTION!
WE NEED ACTION!
Be well and happy!
About the Author
Jeff Lester, 46, and his wife, Lisa, live in Lebanon, Mo., with their three daughters, all born after his ALS diagnosis in October 1993. In 2011, he earned an M.S. in finance and an M.B.A. from the University of Michigan, Dearborn. A former Eagle Scout, Jeff (“ragingbear”) was the founder and longtime moderator of MDA’s “Living with ALS” chat. He has written about life with ALS for MDA’s Quest magazine and the MDA/ALS Newsmagazine, and was the recipient of Missouri’s MDA Personal Achievement Award in 2006. From 2002 to 2007, Jeff served as online editor of “World ALS Research News” for the ALS Therapy Development Institute (ALS TDI).