Monday, August 25, 2014

Embrace the Challenge.

For several weeks now, we've all been fairly acquainted with three letters: ALS. We've been doused, poured, drowned, frozen and dumped with information and ice. From celebrities to seniors to those still in diapers and those, even still, with four legs who have left wet paw prints upon our floors and facebook pages, we've witnessed cheers of chill and gasps of great ice. cold. shock. We have been touched by the personal accounts of those afflicted and have warmed up after the ice, to opening our pockets and donating.

For some, it's merely a fun exercise in joining and jumping on the bandwagon or having their one moment of fame on facebook, and that's okay, too. Perhaps it's the simple joy of reveling in challenging, a.k.a. "calling out", that one friend or family member who you know won't take part, so we secretly smile at the shame of their decline.

But what has struck me cold, and struck a cord, is the unsurmountable presence of those who reject with raw or bitter disdain, the attention ALS is getting. They seem to sneer at how the spotlight is being "taken away" from a cause near and dear to them, rather than rallying around the troops. This is sad, and to me, more cold than the bucket of ice falling upon them.

I am a mother of three children; two, whom since 2009, have been diagnosed with separate and rare diseases or disorders. In 2009, my then 18 month old son, was diagnosed with Early Onset Infantile Scoliosis and endured what no mother would ask for her young, vivacious and beautiful child to endure for the next several months and years of his life. Just this past February, my 10 year old daughter received a diagnosis of a rare, neurological disease called RSD/CRPS, which currently is being researched as possibly an Auto Immune related disease. The health horror in which my daughter has spent the last five months of her life is nothing short of a trip to hell. She is currently in remission, and for this we are grateful, but this mysterious and cruel beast will be a presence in her life and in her body until there is a cure.

I could spend this time sharing about both of their conditions, but choose not to. I am not writing about their paths or using this blog post today as a forum to bring awareness to their rare diseases. There will be a time and a place for that, but today is not that moment.

I am simply sharing my deep concern and quite frankly, annoyance, at the rare disease community at large... the ones who have complained and curtailed the ALS campaign and success to be something to resent or reject.

We are soldiers in these battles and as comrades, should have each other's back. The war is Rare Disease. We should applaud and approach and celebrate the impact of one battalion , which can ultimately lead to an impact for all of us. We should not be suggesting that ALS has taken away our efforts, but instead has brought rare disease and its gruesome, grueling and grotesque outcomes to the forefront of our societal conscience and has lit a path for the battalions that shall follow.

Rather than ridicule the community for stealing attention, we should be amazed at their creative and masterful skill at using social media and a little bit of ice, to tell a story and get the masses interested and invested. It's working. Instead of moaning about how much water and ice are being wasted, I dare those naysayers to reflect on how much time they've wasted complaining about the ice bucket challenge when that valuable energy could have been used to find out about what ALS is or to brainstorm with others about the next rare disease challenge.

Oh and watch out, be forewarned, there will be other challenges that will follow. Why is that a bad thing? Why must judgment and bitterness be our first knee-jerk response? Why must harsh accusatory statements which I imagine will sound like ..."they're just copying ALS..."..."how lame, that's nothing compared to the ice bucket"...""....etc. echo? When did wanting to emulate excellence become a bad thing?

I am proud of the ALS community and proudly participated in having a bucket of ice poured on my head. I am proud of my children, my husband, friends, my family and the stranger-at- large, who took part to make a difference in the life of someone affected by ALS. Instead of ranting that ALS had stepped on our toes, I dumped...she dumped...he dumped... and then something amazing happened. Discussions started as to what we could do to bring awareness to our community of rare disease.
Ideas were pouring out just as quickly and fluidly as the water from our buckets. Others began to use the ALS challenge as a forum to speak openly about another rare disease and dumped and donated on behalf of someone afflicted with a disease other than ALS...that rocks, too.

Despite the cold, it boils down to something simple. Embrace the challenge, people. It's not a waste. It really is as simple and powerful and massive as choosing to be a part of something beautiful and big and important. It is making someone in the dark and dank corner of their isolation and fear, feel...maybe for the first time, that someone hears them. Someone sees them. Someone might actually listen and learn from and love them. For when you're fighting in this war, there is an inevitable and for many, it is death. Living with that reality is what you call a challenge. A mere bucket of ice water is nothing, nor is sharing empathy rather than envy.

I can only hope that one day, the masses and media outlets will be using up cyber space so powerfully and poignantly to bring EOIS and RSD/C
RPS to the spotlight, and we'll be taking part in more challenges and being called out to do more crazy things as a society, that might inspire and inspirit friends and funds, and bring courage and cures to our family and to others.

So go call someone out. Go donate to ALS. Go get a bucket. Get something. Go donate to something you care about or at least quiet your complaints and silence the sneer. Be a part of something big, but be in it with peace and love.

I challenge you.

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