The ALS Ice Bucket Challenge is all over Facebook and Twitter. Even Kermit the Frog and Mr. Met have done it. So far, it has raised more than $30 million dollars for ALS charities – the largest of which is the ALS-Association. As with anything trending on Twitter, the Ice Bucket Challenge is not without its haters. Perhaps the most frustrating came earlier this week on Vox, which questioned whether a donation to ALS is “cost-effective charity.” While people do have limited funds, it is disingenuous to set up a dichotomy in which it is assumed someone must choose between ALS and a global health charity (as if donations are all or nothing in one instant decisions). Second, the article offered good advice for investigating charity ratings, but seemed to not do its homework as the ALS-Association actually has a four star charity rating…but this is not a post about the haters. In this post, I want to share why I did the ice bucket challenge and why I hope you will too.
ALS and the Ice Bucket Challenge is not a trendy fad for me or my family; it is personal. In August 1999, my Aunt Judy was diagnosed with Bulbar-ALS. She had gone for a round of tests because she was slurring her speech and by the time the results were in, we knew there was only one possible diagnosis: Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease. Virtually everyone knows Lou Gehrig but very few actually know anything about the horrific disease that took his life. ALS is a motor neuron disease which progressively spreads throughout your body paralyzing you. Eventually, ALS paralyzes your diaphragm and you can no longer breathe. Most commonly, it starts in your hands or feet, patients can live 10-15 years with this form of the disease. Judy had bulbar-ALS which started in her mouth; she was given 18months-3.5 years to live. In October 2002, 3 years and 2 months after diagnosis, Judy died. She was 46 years old.
I am not exaggerating when I say that ALS is the diagnosis I fear most. I had a front row seat as ALS took away my aunt’s ability to speak, to walk, and to eat, and, ultimately, took her life. The horror of ALS isn’t that it takes away your independence; it’s that it takes away your ability to communicate, all while you are fully conscious of what is happening. From the moment of the diagnosis, you know exactly what is coming. Physically, emotionally, and financially this disease weighs heavily upon patients and their families. We were lucky. Judy was a school teacher with good health insurance, who, because of her terminal diagnosis, was able to cash in benefits. ALS is expensive. Over $100,000 was spent on her care in only 3 years (and that is not counting medical bills). $30,000 for a wheel chair. $500/month to lease a wheel-chair lift van. My mother is an accomplished medical professional, so we had someone to navigate the healthcare and insurance process. I don’t know how much the communication devices cost, but thanks to my mother’s advocacy, very little was denied by Judy’s insurance. In addition to an extensive network of family and friends, we had an amazing team of caregivers. It is physically demanding to care for an ALS patient in advanced stages of the disease; I learned how to properly lift and transfer Judy without hurting myself. I learned what it meant to accompany the dying.
We had resources to make sure Judy lived and communicated as long as possible and died with dignity. What are patients and families without these privileges to do? Navigating the medical world is difficult without a trained advocate. Even with Medicare and Medicaid, medications and equipment are expensive. Respite care is a necessity. This is where the ALS-Association comes in. The ALS-Association of Greater New York has support groups, resources for patients and families, advocacy support for dealing with insurance and equipment needs, and the list goes on. The ALS-Association is there and they are the only “full service” ALS group. People like funding research – science is sexy, taking care of the dying isn’t. While many advocates for the ice bucket challenge are focusing on research and awareness, I want to draw attention to the amazing work the ALS-Association does to protect the dignity of ALS patients. It is the only ALS group which has as its mission research, advocacy, and care. For me as a moral theologian, part of freezing out ALS is making sure those dying of ALS and their families are included, supported, and visible.
So why should you dump a bucket of ice on your head? Don’t do it because Justin Bieber or Derek Jeter did it. Do it because ice water stings and its uncomfortable. The Ice Bucket challenge asks us to step out of our comfort zone and draw attention to something we would all rather not talk or think about: a horribly painful death. As we click to see Conan O’Brien or the NY Jets, we are talking about ALS. If you watched Peter Frates’ or Anthony Carbajal’s courageous videos, then you’ve heard first hand from ALS patients. The Ice Bucket challenge, I propose, can be a gateway action opening the door towards accompanying ALS patients and their families. Every ALS headline and Google search raises awareness and brings ALS into the conversation. Charity and solidarity are not all or nothing actions. But if you’ve read through this post, chances are you know more about ALS and the ALS association. And if you’re willing to dump ice water on your head and post a silly video, then hopefully you are willing to learn a little about ALS in the process. Let’s help protect the dignity of those living with and affected by ALS.*
*For those who may be concerned with the fact that the ALS-Association has previously funded embryonic stem cell research (according to RNS reporting there is only 1 such study coming to the end of its project right now), I encourage you to investigate ALS Association’s research page and the one on stem cells and to contact your local ALS-Association chapter to donate to their care programs.