The Ice Bucket Challenge, a Personal Matter

In a matter of days my newsfeed was filled with people accepting and then doling out an #icebucketchallenge. It gave people a choice: throw ice water over your head or donate money to ALS research. A few days after the challenge went viral, articles both praising and panning the challenge started popping up. Of course, now we’ve got a debate. Is it narcism or altruism? Is it yet another empty hashtag, millennial, pseudo-movement?

At first I was upset. “THERE’S A DROUGHT,” I screamed. “THERE ARE PEOPLE WITH NO ACCESS TO WATER,” I shamed them. “GIVE THE MONEY!!” I was very righteously upset. Who did these people think they were? Don’t you know ANYTHING about ALS? Do you know how horrible it is to watch a loved one fall down, lose their speech, their ability to move, all the while remembering everything? To know that your hero is a prisoner of his own body. I felt slighted. They were trivializing the most difficult years of my life with an inane challenge.

Then the numbers came in. Something like $10million were reported since celebrities started playing the game. My indignation softened. That’s all I ever wanted for my grandfather. I wanted ALS to have more recognition, more funding, more medicine – that meant less people misdiagnosed.

Now that everyone knows about the challenge, now that I’ve come to terms with its existence, I’d like to tell you a personal story.

My grandfather, Avi, was a wonderful man. He was an architect, a teacher, a Cuban in exile, a husband, a father, and my favorite person. He also loved the good life. Good travel, good food, and good wine. In fact, my grandfather made sure to share all of this with us, he wanted us to enjoy our time together. We traveled in groups of 20’s. The entire family went on vacation together. (We still do, because that’s what he would have wanted.)My grandfather’s architecture office was the second floor of my grandparent’s house. That way he could have lunch with his family every day, and even when he had to work late – he was home. (Just to give you a picture of the man.)

One day he fell. Just fell down, and we didn’t know why. Then it happened again. Now we worried. Blood work, hospital visits, and then the diagnosis. Amyotrophic Lateral Sclerosis, once diagnosed, doesn’t stop, it doesn’t give you a time of rest. It’s degenerative, and it’s merciless. By all accounts, getting diagnosed with ALS was a death sentence, we were told. We believed everyone because we didn’t know what it was, no one else we knew had gone through this. We didn’t know what to expect. But if I’ve ever received a lesson in “never give up,” I got it then.

nevergiveup

My grandfather had this drawing behind his desk.

My grandfather kept working. He loved his work. So, when his speech slurred, when his mobility weakened, my family spoke for him, attended meetings, signed for him. There were these clear boards with letters and numbers on them. Even when he was completely immobile, his eyes would speak. He could look at the square and slowly form words. It was like a hangman game for decision making. It got even more difficult. The last communication form took the “Yes/No” approach. Looking at one hand meant “yes,” and the other meant “no.”

As I write this, I realize how much I’ve blurred out. How painful it is to remember him in those last years, because he was so alive. But I think that’s what made him so wonderful. He never showed any cracks in his determination. He enjoyed his life until the end. Until the very end, my grandfather lived. It was never a death sentence.

The last memory I have singed in my brain of Avi’s strength (and of my family’s devotion) is of my grandparents’ last anniversary together. My grandfather wanted to dance with my grandmother, so, my uncles lifted my grandfather from his chair and carried him, placed his arms around my grandmother so that he could hold her and dance as they did countless times before. It was such a simple moment. It was so beautiful. It’s probably the last time I thought something was truly romantic.

ALS robbed me of my grandfather, my friend, my hero.

Throw the water if you must. But donate money first. Please.

http://www.alscenter.org/

Avi y yo

Advertisements