An Open Letter to Nathaniel Comfort
and any other Ice Bucket Challenge haters.
I originally posted this as a comment on his blog post “A Little Cold Water” but I’m sharing it with everyone because I have heard variations on this from multiple sources recently, and I feel my response needs to be said.
I’ve said it many times over the last several weeks as the Ice Bucket Challenge has gained traction and people have started complaining about it — there is no way to complain about it without sounding like an insensitive a-hole … especially to people who have ALS or have loved ones who do.
Even when people add the “I feel for ALS patients and their families” or “I know ALS is a horrible disease” bit, it still comes across like this:
“ALS isn’t an important enough cause for all this attention” because deep down, that is what what you’re saying means. You feel that there is something else deserving of more attention than ALS research or patient care.
In fact, you (Nathaniel) even say that. How freaking arrogant of you. Sure, it’s less common than say certain types of cancer, or Alzheimer’s, or whatever other pet disease you have. But speaking from experience of watching a loved one slowly lose the ability to do anything for himself; to having your mother too stressed to leave the house for fear that once again he will fall through the glass screen on the fireplace when she finally leaves the house to run errands; to sit by his hospital bed when he has a gastric feeding tube surgically installed because soon he won’t be able to consume food through his mouth without fear of choking to death, only to end up in the hospital again a week later because he contracted pneumonia from previous hospital and almost dies because his lungs are being further compromised from the already limited capacity they now have; this IS IMPORTANT. Having to help this once proud and independent man to take care of basic functions like getting into the bathroom or bathing. Not to mention the daily activities of feeding him through his tube, breathing treatments which involve hooking him up to a machine that forces him to take deep and painful breaths over and over again so that his lungs don’t fill up with fluid, or the vest that shakes the phlegm out of his chest because he no longer is capable of coughing. To see him have to keep a handkerchief on him at all times because he drools and can’t help it. To never hear his voice again because it has been stolen from him. To know that he will never be able to walk my sister down the aisle, and that there is a good chance he will die before that even ever happens… since the average lifespan after diagnosis is 3–5 years and it’s already been 2.5.
Did you know that because of the money raised from the Ice Bucket Challenge ALS TDI is actually initiating a clinical trial for a promising drug which they were holding off on because of lack of funding? Did you also know that there is only ONE approved drug for the treatment of ALS and even it has a marginal benefit, if any, to the majority of people who take it? Also they are funding a new precision medicine study to prescreen compounds on ALS patient iPSCs, search for biomarkers, and sequence the genomes of affected individuals. Before the challenge they were only able to fund a study with 25 individuals, but now they will be able to enroll hundreds of patients. This is just a sample of the great things that are being done as a result of the Ice Bucket Challenge, and ALS TDI only received a fraction of the money that the ALS Association did.
So sure… go ahead and be annoyed at the viral campaign all you want. Post something even if you feel it is necessary — but before you do think about just exactly what you are saying and what you aren’t saying and what it means to those of us who do think that ALS is a cause worthy of all this attention, who are thrilled that after so many years in the shadows and underfunding and lack of research initiatives finally the whole world has heard about it.
This wasn’t a part of my original comment but I just wanted to leave a parting thought.
If after thinking about it you still decide to go ahead and publicly say something — just realize that you will sound like a jerk and no matter how many other people might be leaving you “positive comments” on your blog or facebook page, you are offensive to people who care about this disease and seeing it eradicated. If you are still so confident in your position, I would encourage you to come out from behind the protection of your computer screen and tell someone with ALS to their face how unimportant you find their disease in the grand scheme of things.
Honestly I think one of the reasons why people feel comfortable complaining about it publicly is that because ALS is relatively rare, they don’t realize that someone affected by it (personally or through a friend) might be standing nearby. I can’t say I’ve ever heard someone complain about the Race for the Cure. In fact, the chances that someone around you might be affected by ALS in some way are larger than you might imagine — it is a disease that makes people uncomfortable when you bring it up so many people keep it to themselves, until someone else brings it up that is.
I’m proud to have completed the #ALSIceBucketChallenge with my friends and colleagues at Baylor College of Medicine (one of those rich, white, elitist schools you mention…), and even more proud of the thousands of dollars that we donated to the local ALS clinic and ALS Association afterwards. I’m also proud of my friends who donated without dumping a bucket of ice water on themselves too — because in the end it is donations that are the goal — the rest is just a fun way to participate.
I hope that this viral campaign continues to spread, and that in 5–10 years people look back on this and see that it was because of this that major advances were made in the treatment of ALS. I would also like to mention that just because I am happy that ALS is recieving attention and funding right now does not mean that I believe it is the only important or worthy cause, or that other things should not be getting funding, or that other things are somehow less important. There are many, many things that need our attention in this world — and just look what we can do when we take notice. I sincerely hope that some other cause in need of funds comes up with an equally successful marketing strategy. I wont begrudge them a single penny!
If you are interested in donating (with or without an Ice Bucket) check out ALS TDI or the ALS Association, or you can look into your local ALS clinic and donate directly to them for patient care assistance. If you’re not interested in donating, just don’t tell me about it, and have a nice day!
