a few days ago while scrolling through my facebook news feed I was stopped by a video of my dear friends daughter. of course I clicked play, isn't that what you do when your friends post videos of their children? wait, did she just say ALS? no way she is talking about the ALS I know. she is kind of smiling. wait, ice water - a challenge ... what??? stop. play back. yes, ALS. a bucket full of ice OVER her head and laughter. stop. volume up, all the way, play back. what...? Google search - almost an hour later, family gathered around the computer, laughter and tears, sincere gratitude meets deep grief and my 5 year old daughter want's me to challenge her to the #icebucketchallenge.
ya see, ALS is not something you speak about with a smile on your face. ALS is something that you have to explain to people. let me make this a little more clear, explain to people while their is still the shock of a terminal diagnosis, or while watching someone slowly suffer through it, or while grieving the terrible loss from it and sometimes while holding back your own personal pain, tears and grief. still not clear? People don't know what ALS is.
people know about cancer, HIV & AIDS, M.S. & M.D.S. you can tell someone, 'it's stage four lung cancer,' and immediately receive support, empathy, a hug & maybe some form of nonverbal exchange that it's "okay" to cry. not so when ALS is the diagnosis. their first has to be an education. in my personal experience, it was so important to me to explain the disease - that people understood it - how it works both inside the body and out, that all emotions had to be set aside for a moment, so that anyone actually caring enough to ask what it is, fully understands as much as they possibly can about the disease without the awful experience of having to walk through it themselves. sadly though, a lot of people would unknowingly ( at least I hope ) scrunch up their face and say "ooh" as if to say 'I've never heard of ALS, don't know what it is and sure hope I don't catch it from you'. yup. you'd be surprised.
so once the education has been given their is a process for those who have heard and listened to what ALS actually is. a processing of the horribleness. the horrible brevity of what someone has gone through before their passing. the heavy weight of having to watch someone walk through it. generally speaking, the conversation is just too much for most people and the explanation of the disease is where it begins and where it ends. few people will in turn ask, "how did you handle that?" "how are you handling that now?" it's just too much. it's more than people can manage to hear about & quite frankly, it's a downer. to be perfectly fair - it's straining to both hear about as well as to tell someone about it, weather you have walked through it or not. for those few times when someone has cared enough to listen to the explanation, cared enough to ask more questions, i've been too exhausted to tell them just how much it sucked. it still sucks and is somehow harder to cope with now then it was to go through it almost 20 years ago.
so here I sit watching challenge after challenge of countless ice water buckets being dumped over the heads of strangers, friends and family a like. I cannot get enough of it. the smiles, the silliness, the laughter surrounding it all. as sad as it is that it exists, it's encouraging to hear the initials "ALS" spoken by so many people. it's being talked about. people know it is SOMETHING. people. many people. a whole new community. strangers who may just be having fun. maybe they don't understand the disease but these people make up a community. a community of support. i'm not even sure I understand it myself, i just know that is how it feels to me. while those shivering, cold, challenge participants giggle & laugh ( & sometimes swear!) i'm feeling supported. feeling loved. feeling a sense of community. of something bigger than i am that is willing and able to make known that ALS is something. it will come, people will know how awful it really truly is, but right now, the awareness that has been achieved through such a silly act is worth far more then my explanation ever could be. dare I say, it's worth more then its weight in the water used to complete the challenge.
can you believe some have said it a waste of water? lot's of people in fact. a waste of water. sure, your entitled to your own opinion & it sounds like you should probably not participate in the challenge. i'm gonna go so far as to say is sounds like you may also be those same people who would hear the initials ALS and scrunch up your nose and say "ooh." it's okay. we all have a tendency to fear what we don't understand. but now i'm gonna pass on a challenge to you. the challenge not to stay there. in that state of ignorance and fear. www.ALSA.org is a great place for you climb your way out of that whole. sure, I hear that my tone may sound harsh, but you gotta know that the facts are a lot more harsh then my opinion. since 1939 only one drug has been approved by the FDA to "help" those suffering from ALS. this drug, it only prolongs the life of an ALS sufferer for 2-3 months. that in and of itself is harsh & unacceptable. now please, know that I mean this in all sincerity, no harsh tone at all - I pray that you will never have to be thankful for the funds raised during the ice bucket challenge because a friend or family member of yours is dying from it. because I pray that all this money raise during this "pay in water only fundraiser" is going to help fund the fight. I am, for the first time ever, feeling encouraged that their may come a day that something can be done to actually help those suffering from ALS. so before you go posting that silly little meme about the water being wasted, please educate yourself first. please know exactly how the challenge works. please be sensitive to those of us who are effected every singe day of our lives by ALS. ask questions. keep asking questions. put yourself in the shoes of the other person. be, dare I say - tolerant? & if you are still upset that water is being used as a fundraiser, do find yourself a great organization that you feel passionately about and help them to dig wells where they are needed, or kindly donate to the communities that need to raise the funds to build those wells. being sarcastic - or passive aggressive - about anything at all is never a good way. find another way that you can positively effect another individual, or even many people.
to those that have participated, please accept my sincere gratitude. you may never understand how healing the #icebucketchallenge has been to me, personally. thank you for simply saying those initials out loud. please keep praying for victory over this disease so that we really can #strikeoutals once and for all. & please, lets just be kind to one another, even over the tough things - especially over the tough things. this life is hard enough and kindness really does make a difference. thanks for reading :) amy