Of Ice Buckets and Silent Patients

Barbara Brenner, the first full-time Executive Director of Breast Cancer Action was a 2-time cancer survivor who died of ALS. Even when her voice was silenced by the disease, her writing continued to educate and inspire. She never stopped asking the tough questions, and persisted in her demand for answers. She is missed.

Even as our Facebook feeds rapidly fill with videos of some very cold people (as well as some Three Stooges-grade comedy), the controversy of the ALS Ice Bucket campaign is being challenged.

My take: people have done stranger things for a cause – buying and using carcinogenic products for “the cure” comes to mind. 

Wasting water? Some – yes, absolutely. But I’ve also seen friends stand in a pool and use pool water so that everything but what soaks their clothes is recycled.

Taking away from other charities? That could be. But if you didn’t know before, you probably do now – ALS is devastating. It is like dying from within. While your mind stays sharp, your body parts lose function – use of limbs, voice and even the ability to breathe are inevitable with this disease. I haven’t looked at the numbers in depth, but the ALS Association is well-rated and regardless, the needs of those living with ALS are most certainly worthy.

Are there better fundraising options? Probably. A campaign that will sustain the new funding levels would probably be the ideal option. And that may come. For now, the infusion of over $15.5 million dollars can, if used well, make a meaningful difference.

For me, here’s the biggest issue of all: while practically everyone has heard of Lou Gehrig’s disease, I fear too few of us knew what it was before the Ice Bucket Challenge began. Patients aren’t out and about much, and it’s easy to forget about them. Awareness and education, and helping ALS patients share their voice and their stories matters. It matters a great deal.

You probably know I’m not a huge fan of “awareness” campaigns – I do feel strongly that they need to be tied to action. As a person living with what is often referred to as a “bully disease,” I recognize that there are many levels of awareness. While we are all of breast cancer, inflammatory breast cancer, metaplastic breast cancer and metastatic breast cancer (to name a few), typically remain shrouded, and are not given the attention the severity of these diseases demand.

So, the ice water part is all in fun, but let’s pay careful attention to the heart of the matter: giving voice to patients and supporting an under-funded disease. If you don’t know what it’s like to live with ALS, please watch this video: 

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4 Comments (+add yours?)

  1. helensamia
    Aug 21, 2014 @ 23:11:45

    My auntie and a very good friend both died of ALS… It was devastating

    Reply

  2. phxross
    Sep 09, 2014 @ 13:54:21

    I lost my aunt (married to my mom’s older brother) to ALS in 2000. Then testing showed, to everyone’s relief, that it was not the familial (hereditary) type. The tests were wrong. in September 2009 I lost my eldest cousin Arthur (my aunt’s eldest child) to ALS at 55. Only 2 years prior hubby and I had gone to Vegas to cheer him on as he ran the marathon. We had a Family Reunion summer of 2009 that nearly everyone attended, mostly because we all knew it would be Arthur’s last reunion. Yet as we left he hugged me and my hubby and said “see you in 3 yr”. My stoic husband nearly lost it, I did loose it as we drove off. Arthur knew full well that it was the final goodbye. He and I had many deep heart to heart talks that summer, after the reunion, via email when he could no longer speak. Spiritual discussion in a family where my mom’s family was Lutheran and my dad’s was Jewish. I’m grateful for the ability to say goodbye and connect on such a deep level. But Arthur’s four younger siblings, and the 10 children of Arthur and his siblings, now wait…….to see…..if the next stumble or cough is the early sign of ALS. This summer’s Ice Bucket Challenge warmed my heart every day. It turned from “do the challenge or donate” into “do the challenge AND donate”. (Karin)

    Reply

    • Lori
      Sep 11, 2014 @ 20:39:01

      I am so sorry for your loss, Karin – both of your aunt, your cousin, and the loss of innocence. (And my tears probably wouldn’t have waiting until I left the reunion…)

      I’m so glad that the ALS Challenge was uplifting, and I agree: the fact that it became a DO AND GIVE challenge was a truly beautiful thing!

      Reply

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