Sunday, September 07, 2014

Those with ALS can still LOVE... please share with pride

Short Message: Please Watch and Share!  Can I get to 100 shares? [Subliminal Message: I'm not asking for money]

Long Message:

The Ice Bucket Challenge videos have been criticized by the media about missing the point, sometimes not even mentioning ALS.  This one is real.  

I want the world to know that people with ALS need our love and help.
Even when they can't say the words, 'I Love You,' they do love and they need to hear those words from you!

"Don't be embarrassed or shy to ask. Be proud! This is for a great cause!"

That was part of the pep-talk I gave at a kick-off meeting for the Walk to Defeat ALS.  I reminded people that those suffering from ALS have to depend on help for every task they do. Certainly the least we can do is send an email or share a link.

I've already raised $8700 for ALS, which is the most money I've ever raised and I feel proud and indescribably grateful for the generosity and support from my friends and family... More than I can properly say.  Every dollar, every word of encouragement, every "like," is a hug that warms my heart and often brings tears to my eyes. I've had so much emotion during this journey.  If I could scoop up the collective souls of all who have supported me in an embrace, I would be weeping uncontrollably... partly out of grief and sadness for those who are affected by ALS -- but mostly out of gratitude, joy, and hope at the mass attention and help that the ALS community is finally getting.

I had a goal to raise $12K by September 13 and I don't want to give up. I always take my goals seriously (ok, I'm a nut job), but this time... I just can't explain why it's so important, but those who have loved someone with ALS will understand.

Is it easy to ask for help? No! We don't want to put our friends and family on the spot or make them feel guilty. We're afraid they won't "like" our message (pressing the 'thumbs down' in their minds) or might even "unfriend" us! But are we really so insecure about our friendships that we're afraid to spread the word about a good cause? Would you really even want a friend who would fault you for being compassionate?

I finally figured out why the Ice Bucket Challenges were so popular, even though initially it made no sense to me why people would want to share a video about NOT donating.  They were more popular because they didn't make people feel like they were asking for money! It's probably why so many of them did NOT ask for money or even include a link.  This has been criticized by the media... calling the videos silly and narcissistic.  But maybe the not asking for money part was the key to why it went so viral? It allowed people to share without feeling self-conscious and the videos sparked enough interest for people to find out more and recognize how truly awful this disease is and to give.

So one last ask from me... Please just share this blog post. [Subliminal Message: I'm not asking for money, I am not asking for money, I am not asking for money.]  If I don't raise the $12K the world won't come to an end.  In fact, I really just committed to "being the top fund-raiser for the Denver Walk" and so far, I am! So technically, (unless no one surpasses me in the next 5 days) I'll have met my "goal."

But, I want this last chance to let the world to know about Craig and others with ALS.  I want everyone to remember how precious life is, to never give up, and mostly...  Love like you were dying....

Other links:
My new GoGoCarpeD Website: The complete collection of my Super Carpe Diem videos.

The Story of Craig: A series of posts I wrote about my experiences with Craig after he was diagnosed with ALS.

ALS Association Rebuttal to the recent fraudulent attacks to their reputation that went viral.

My Team Carpe Diem Page - There will be 30 of us Walking to Defeat ALS on September 13th in Denver's City Park. Come join! Go Team Carpe Diem!

Thursday, September 04, 2014

No words to describe...

I like to write. I love words. And yet, there are times when words feel so inadequate.

There are times when the only way you can describe how you feel is by describing an experience and if the person you're talking to hasn't had that experience, they can't completely understand.

For example, it's hard to explain the way your stomach flips when you're on the tilt-a-whirl unless you've ridden on a tilt-a-whirl.  Describing the pain and pure joy of giving birth is possible with words, but really only understood completely by those who have given birth (and even then there are a variety of birthing "war stories" that only certain mothers will identify with.)  Pride at watching your child perform, giddy infatuation of a secret love, fear while waiting for the results of a biopsy...  these are all feelings that those of us who like to write try to capture in words, but the words are imperfect, no matter how many times we consult the thesaurus.  We know that the only people who will truly "get it" are those who have had a similar experience.
Another feeling that very few people really understand is what it's like to love someone who is dying from ALS.  Most people haven't had that experience.  And though I won't try and describe that feeling in this blog post, I'll tell you that my emotions are hyper-sensitive when it comes to anything ALS-related.  So whenever I get any donation or any support for my current fund-raising effort, I feel more than grateful. I feel moved. I feel the same type of comfort you get when someone consoles you after a death. Again...another feeling that's hard to describe unless you've experienced grief.  

Today I saw my donation thermometer on my Walk to Defeat ALS page go up by $1100 with a single donation. That's right. I received a donation for $1100 from someone I barely know. And it's not the first time. A few months ago, I was surprised by a $1000 donation from this same "angel." That's $2100 for ALS from a virtual stranger.

What do you say when something like that happens? Most people would think... Um.. How about, 'Thank you!'? Or, maybe they would tell me: 'That's gratitude you're feeling.' But it's more than gratitude. It's wonderment. It's awe that someone could be that generous.

I think the best way to describe how I felt today is the scene in "When the Grinch Stole Christmas" when the Grinch's heart grows 3 sizes bigger and breaks out of its mold. It's that same kind of admiration I felt when I was around Craig -- a man crippled and unable to speak -- yet still with a twinkle in his eye, a mischievous grin on his face, and ready to play.

That huge admiration I had for Craig is one of the reasons it was so hard for me to watch him die. The world was losing this unique and wonderful man and there was nothing I could do about it. And then today, a unique and wonderful man did something incredible... and I got that same indescribable feeling of admiration.

That feeling -- that feeling that makes tears come to my eyes -- that feeling of gratitude that the world has such good people -- that feeling of hope that a cure for ALS is not far off -- that is the feeling that I can't describe. That is the feeling that there are no words for... that feeling requires a response that means so much more than 'Thank you.' Why doesn't the English language have some kind of 'Extreme Thank You' word?

So I offer up this blog post, not just to that generous donor, but to every person who has supported me on this journey.  I still have 9 days left and have a few Ice Bucket Challenges left in me, as well as a grand finale video, so I'm hoping to reach my $12,000 goal. But whether or not I make my goal, I am grateful for every dollar, ever "share," every word of encouragement, and every silly video that has been made in support of finding a cure for ALS.  I am more grateful than I can possibly describe.