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.
-
- My mom, before…
-
- Mom on her final birthday… barely 11 years later.
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.
fundrazr.com
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.
* * *
What do I want? I’d love to see my Tales From the Motherland Facebook page reach 500 likes in 2014. Have you stopped by to spread some fairy dust? Follow me on Twitter, it’s where I try to be brief. Most importantly, if you like a post hit Like, and leave a comment. I love to hear what readers think. Follow along; you’ll get each new post delivered by email, with no spam. If you see ads on this page, please let me know. They shouldn’t be there. © 2014 Please note, that all content and images on this site are copyrighted to Dawn Quyle Landau and Tales From the Motherland, unless specifically noted otherwise. If you want to share my work, please give proper credit. Plagiarism sucks.
TALES FROM THE MOTHERLAND 
I haven’t been challenged– and am happy that I haven’t. I have a post in my head not written yet about this social media event– truly a remarkable feat– and like you, I thought of many, many other diseases, like Huntingtons– that are being overlooked. Good post and lucky you to have the kids home for the summer. Is your daughter returning to Israel? ( email me.. xo)
LikeLike
I’d love to see what you have to say about this, Lisa. There are a lot of sides to the topic… yes, Principessa returns in a week. It will be hard to see her go! xo
LikeLike
The line, “I spend most of my time trying to push it down,” this is what struck at my heart. Because when you’re in a genetic soup family, a place of disorganized genes and/or chromosomes, or of markers that are only now being named, you truly spend your life “pushing it own”, gripping it in your fist or between your teeth until it becomes a small blue thing.
Gorgeous post. (I have a college friend who lost her Mom to ALS right before I met her, and she is riding across the US right now to raise money for ALS research. Right now. This goofy challenge has been a gift.)
LikeLike
Thanks so much Jen. You sound like you have some personal experience with genetic illnesses? Either way, I appreciate your thoughtful comment and compassionate thoughts. Thanks so much for your support; it means a lot.
LikeLike
You were a sport to do it, and I loved watching the video (you have a lovely speaking voice, by the way!), but I hear what you’re saying about remembering what’s behind the challenge. Real people with a real disease. And you’re right–so many diseases are underfunded. It would be nice to see increased awareness for all of them.
LikeLike
It would be amazing! How sad that despite how happy I feel for the many people supporting ALS, I couldn’t help but also think: now, no one will do the pie challenge. We’re all that desperate… Thanks for your comment Carrie, and I’m glad you liked my voice– I tend to be critical of my own voice (among other things). 😉
LikeLike
I’m sorry to hear you and your family are living with the reality of HD. I lost a sister-in-law to ALS, and follow the blog of a man who was diagnosed with it 18 years ago. I don’t know anyone else who has lived with it for so long. I first heard of Huntington’s on a TV show we used to watch–one of the characters received that diagnosis, and her father had succumbed to it. I think anything they can do to raise awareness like that is a good thing. Hugs.
LikeLike
Thanks so much Patti. I agree, anything to bring awareness– but it’s hard to see some get attention while others don’t, especially when they all are deserving. As for ALS, I know Steven Hawkings has lived with it for about 30 years, I think. He is 72 now, and has been in the spot light for a LONG time! I’m so sorry that your sister in law suffered with it; it is truly a horrible disease. Thanks so much for sharing, Patti.
LikeLiked by 1 person
It’s amazing what a phenomenon the ice bucket challenge has become. One of the captains I used to work with had Huntington’s. A few years after the last time I saw him, I heard that he had had to move into an assisted care facility. What a horrible way to go.
A few years ago, I met an Energy Healer (Roger Deycaza) who came to Bellingham for about 3 weeks. He gave a talk and described what he did, and told us about one very determined man he worked very intensely on, who eventually was cured from his ALS. This type of healing work, I am convinced, is our best hope right now when it comes to diseases like this. The healer brought a woman with him who he had also worked on, who has had bones that were previously broken, healed to the extent that you can no longer see on x-ray that they were ever broken. He has worked on both me and my son, keeping me off the orthopedic surgeon’s table, and my son off the autism spectrum.
If modern medicine can find cures for these horrible diseases, then great. But I wish people would put there money where it would really pack a punch.
LikeLike
Sue, what an incredible story! If healers can help those with these illnesses, that would be worth all efforts, but I remain a bit skeptical. I’d have to see all the details, given my own experiences with HD. What an incredible thing for the man that was cured! Thanks for sharing; I always appreciate your feedback.
LikeLike
The one thing that Roger stressed when recounting the story of working on this man was that the man was extraordinarily determined. To cure such diseases using energy healing, a person has to be open to the process; and it is a process. I used to experience depression. No longer. I used to be a food addict. No longer. I so wish horrible diseases like Huntington’s, ALS, Alzheimer’s, cancer, and mental illnesses didn’t exist. I’d love to see the day when energy medicine, the pharmaceutical industry, naturopathy, homeopathy, and other modalities were used equally, side by side.
LikeLike
Bearing witness with you Dawn. Heart breaking – the amount of suffering a person can bear. xo
LikeLike
Sara, do you have someone who has HD, or ALS? It is indeed heartbreaking! Hugs to you, as we both face our challenges. xo
LikeLike
No, I don’t Dawn – it’s just that your post really touched my heart, and made me feel that as one of your readers, that I could bear witness with you. I hope that wasn’t presumptuous. xo
LikeLike
NOT at all, Sara. I’m deeply touched, and thank you for such a lovely comment. I thought maybe you too had someone, and missed that beautiful gesture. Thank you! xo
LikeLiked by 1 person
I echo all the sentiments expressed by your commenters. I would just like to add that I think you have suffered enough on behalf of yourself (guilt) and your loved ones. No one can replace the personal loss you have experienced and still live with. I hope you can be as generous with yourself as you are with others. You have such a big heart. Just know that you are loved more than you may realize. Thank you for your heartfelt story, Dawn. (Big hug) – Mike
LikeLike
That is SO kind and sweet, Mike. Thanks for the reminder… it’s exactly what I’m working on. Hugs back at you!
LikeLike
Reblogged this on The Huntington's Chronicles and commented:
I haven’t written here in a long while… for all the reasons explained in here. It makes it that much harder to really maintain my denial. While I pride myself on a direct, honest approach to life in general: Carpe Diem and all, I live in a perpetual state of avoidance with Huntington’s. It seems enough to watch those I love suffer; it’s been too hard to write about it regularly as well. Here is a post that I wrote for my blog Tales From The Motherland.
LikeLike
Another good cause and it’s wonderful that the strategy worked. Loved watching the vid. You also did a fine job of sharing your connection to personal suffering. Thank you.
LikeLike
Thanks Susan. I have another blog which focuses solely on HD, but I don’t put it out there that much. Such a hard topic. I appreciate your continued support. xo
LikeLike
Every bit of funding counts and this video is the first I’ve seen where you can see the human factor involved. I suppose as long as the funding keeps coming it does not matter whether people do it for social media or for a genuine concern for the charity. Thank you reminding us of the actual reason and sharing that video.
LikeLike
Thanks for taking the time to read this, Subroto. Yes, the motivation doesn’t really matter, as long as people actually mail in their checks… a lot of people do the video, have some fun, and forget. Those of us living with these diseases in our families, really need those funds! That’s what I meant… The Peter Frate video, at the end (link) is really great too!
LikeLike
Yay!! Good for you, Dawn, to do the challenge. And you made me laugh! I loved the shriek at the end. I applaud you for also acknowledging Huntington’s and that there are many diseases out there needing attention. I’m amazed at the success of the ALS challenge and how much money it has raised. Can you imagine if all fundraising efforts were so successful?
LikeLike
It’s been incredible! So many good causes need the support. I’m glad you enjoyed the video, Amy. 🙂
LikeLike
All the kids in my family (including my son) did this challenge lined up in the driveway in the Midwest. He challenged his dad. And since we live in California, we just donated. Can’t waste the water out here.
LikeLike
I just wrote a (long) post about a Somali driver I met last week in San Diego… we talked a lot about water. It was very moving! Thanks for checking out my story; your time is appreciated. (Especially since you should be chilling! 😉 )
LikeLike
The rest of your story is devastating. I can’t even imagine. Yes, the need to breathe and know we have no control over the dice roll. Keep moving forward and love as much as we can.
LikeLiked by 1 person
Absolutely! There are days when I can barely move forward and (many more) days when I really get that all we can do is breathe and keep going. But, those boundaries and letting go are the real challenge!
LikeLiked by 1 person
Dawn, you are brave. It takes every ounce of strength a person can summon to bear witness to what you have described here. Of course there are emotions which are difficult to put into words. That you share this part of your life in an effort to educate others makes you courageous and worthy of admiration. Peace to you in moments of temptation to draw comparisons between your feelings and those with a diagnosis. Your feelings matter too.
LikeLike
Thanks so much Honie. To be totally candid, I don’t feel courageous or worthy of admiration. My family members who are struggling each day with this face such an enormous battle– such an unfathomable burden, but I’m glad that others can learn a little about this, and share the burden a little. I really appreciate your thoughtful comment and kind support.
LikeLike