Like so many people in the past few weeks, I recently did the ice-bucket challenge for ALS. I was challenged by a cousin, and I in turn challenged four people. Honestly, I was tempted to skip it and just send a check; I’m not big on the social medial challenges. It’s not that I don’t believe in the causes, it’s just that I know I can send a check without jumping in ice water, or posting a provocative status update (something a good friend took me to task for in the breast cancer trend). However, I loved that my cousin and her adorable daughter nominated me, and so I did it.
At the time, I was seriously news deprived and behind on a lot of things, having spent a lot of this summer traveling, visiting people, or having house guests here with us. My two eldest kids have been home this summer and I’ve been seriously out of touch with a lot of things. Given the enormous popularity of the ice-bucket challenge, it’s as if I crawled out from under the metaphorical rock and had ice water dumped on me– all for an incredibly good cause. And that therein lies the point of this post: There is a cause that all this ice is being dumped for. There is a face to ALS, and there are a lot of broken hearts behind those faces.
Take a few minutes and watch this video, to see what this is really about. Tune in at 2:00 minutes, to get to the heart. Warning, this is heart breaking, but SO important!
And that’s where I found myself really struggling. I’m no expert on ALS, and my guess is that most of the people who took this challenge had or have no idea about why they’re really doing it– aside from creating clever videos for Facebook and their friends. And it’s really amazing just how many people have done this– how many famous people have jumped on this iceberg. It’s amounted to millions of dollars of support for ALS ($11+million in one day!)– which barely makes a dent in the huge cuts that ALS researchers have faced. There, that’s the point. While ALS has certainly gotten so much more focus than it would have otherwise, when all the buckets have been emptied, those on the front line will still be suffering, with too little funding and often with little company.
Again, I’m not an expert on ALS, but I am personally intimate with Huntington’s Disease (HD), a genetic disease that is shares some pretty horrible similarities with ALS medically, but is most like it for its huge lack of funding; its devastating impact on families who have it (there is no cure, and it is always fatal), and the sense of isolation so many of us, who have it in our families, feel. As well meaning as so many people are, not many really want to hear about Huntington’s (or suffering in general) and what it’s really like to live with this kind of disease. People want a happy ending, a hopeful future, a silver lining– and with HD, there is none. ALS is a horrible illness, and so is HD. It is genetically passed in families, and is considered the most devastating genetic disease, by many scientists in the field– though most of you have probably never heard of it. If a parent has HD, each of their children has a 50/50 chance of contracting it. Those are horrible odds. Huntington’s is a neurological disease and can affect the brain/memory/processing; it can affect movement and mobility (muscle) or, it can affect both. In my family, it has been the latter. It is always fatal, and life expectancy with active symptoms is 10-20 years– less time in younger patients. Sadly, it often impacts younger people.
The Huntington’s Disease Society of America’s (HDSA) website states:
“HD slowly diminishes the affected individual’s ability to walk, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington’s Disease profoundly affects the lives of entire families — emotionally, socially and economically… Early symptoms of Huntington’s Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.”
My family had never heard of this disease either, until my amazing grandmother was diagnosed with it. Prior to her diagnosis, people were convinced that she was drinking, her movements had become so erratic, her speech less clear. Since then, our family has been shaken to its core by Huntington’s. My grandmother died, a shadow of her former self, after twelve years with the illness. My aunt, only six years older than me, died at 49 years of age, after only ten months with the illness. Her onset and progression was terrifyingly fast, and yet we all saw it as a blessing. She did not suffer for as long. My mother was next. She suffered with the disease for thirteen years– many of them plagued by frequent falls (countless broken bones and injuries), memory loss, fractured relationships with her siblings and extended family, a complete change in her appearance, and a total change in virtually every aspect of her life. She died three years ago this New Year’s Eve. My younger sister was diagnosed almost eight years ago, and is symptomatic. She’s 46 years old.
Of course I’m so grateful that I don’t have Huntington’s, but to bear witness– to be left behind, sometimes feels just as cursed. I feel guilty saying even that. On so many levels it’s obvious that bearing witness is not as bad as having HD, or ASL, or any one of the devastating diseases that are equally life altering for everyone involved. However, to watch so many of the people who you love most suffer and die, is unbearable. To know that all of my nieces and nephews, who mean the world to me, will potentially deal with this same reality– as they face the 50/50 roll of the genetic dice. I feel guilty that I don’t have it; I feel helpless that I can’t do anything to change outcomes, and yet everything I feel pales in comparison to what my family members with HD have been through. However, it’s definitely taken a toll.
I spend most of my time trying to push it all down. I choose to live in a state of denial about all of this, as often as I can. I wish I was someone who could go to fundraisers and HD walks, but they leave me feeling more hopeless than I usually do. The last time I went to a fundraising walk, I came away totally shaken. My sister is amazing; she attends any that she can; she supports friends who have the disease; she grieves those who have died, and she stares it in the face every day. I can’t do that. The reality never leaves me. I am always aware that this is following me around, but I can’t stare it down.
When I watch the videos about the ice-bucket challenge– the videos about the real people, facing this real nightmare, I can hardly get through them. I hear their stories, and I understand their experiences on a visceral level. I recognize their pain; I’ve seen it up close on the faces of my loved ones. Different diseases, different letters, but the nightmare is the same for my family– and all those ice buckets (while inspiring and wonderful) are hardly making a dent in the hole that budget cuts have made, for medical research. Cancer, Parkinson’s, Alzheimer’s… they are the biggies, all generously funded. That’s little consolation to the many families living with those illnesses, of course, but with HD and ALS there is an added layer of horror in the sense that pharmaceutical companies don’t feel that my mother’s life, my sister’s life, my aunts, my grandmother’s life and the people in those videos lives, were and are not worth funding. The big dollars go elsewhere, not to Huntington’s or ASL, or countless other illnesses that are less visible.
A strong impetus behind the ice bucket challenge is a young man named Peter Frates, a former baseball player. In support of Frates (watch his story here– watch to the end to see Pete finally take the challenge himself), Boston athletes started doing the challenge, Frates took it to social media and it caught fire– drawing celebrities, executives, regular people and famous people like Oprah, Bill Gates, Matt Lauer, and others. There are few who aren’t doing the ice bucket challenge. Huntington’s Disease has a pie challenge that has not gotten anywhere near the publicity that the ice bucket challenge has, and it’s unlikely that it will. This ALS challenge has been a true miracle for those suffering from the disease and for those doing the research, but it is still so little compared to the funding that’s been cut.
The point that is sometimes lost in all that ice water and pie is that these are a fundraisers to help real people, suffering enormous challenges and loss. Send your checks people! Those with ALS need that injection of hope, that financial kick in the butt. Because when this dies down those of us facing terminal genetic illnesses: those who have the disease and those of us bearing witness, will be alone in the trenches again, wishing that a cure was indeed in sight, wishing that we counted.
Please donate to ALS or HDSA… or contribute toward an illness that is personal to you. But send those checks! Bring hope to people who are fighting for their lives.
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