Thursday, November 13, 2014

The ALS ice bucket challenge

I'm sure you have heard about the ALS ice bucket challenge. You may have even been challenged yourself. I know I was, but I opted out of it since I had just donated to ALS in memory of our next door neighbor, Tom, about a week before it became the "in" charity to donate money. 

To date (November 13, 2015) the ALS ice bucket challenge has received $115 million dollars in support. Money they were surprised to receive. On October 2, 2014 ALS announced $21.7 million (plus a $12.5 million matching donation) will be used "to support six programs and initiatives to expedite the search for treatments and a cure for amyotrophic lateral sclerosis (ALS)"

While that is awesome, that is not the story I want to write about. I want to tell you about my awesome neighbor, Tom, and his family. I'm not going to share any secrets about them, only stories already published in the newspaper, and a couple of personal anecdotes.

Two years ago Tom saw us struggling with taking down our willow tree following Superstorm Sandy and offered us use of a tool. We both took one look at him and knew something was different about Tom, but could not place it. Turns out, he did not know what was wrong and would not know for another two months, though he was aggressively undergoing testing at the time.

Fast forward a few months. His wife, Karolina saw us doing yard work together (yes, again). Her first words were "oh, good, I wanted to talk to you together." We knew this was not going to be good news. I had already seen her talking to other neighbors, followed by tears and hugs. 

The diagnosis was official: Tom had ALS.

Other than hearing the name "Lou Gherig's disease," and knowing the mother of a friend from college had it, we knew nothing about it. We certainly did not know it was a death sentence. We certainly did not know how quickly it would take over their lives.

Every single day ALS made his life harder.

Every single time we saw them, we saw their love for each other grow.

The Lawrence Gazette ran this story about them in January 2014, highlighting the fund raising his daughters Emma (8) and Sophie (10) were doing for their father at school.

Inspired by them, Ashley organized a Dress-Down Day fundraiser at her school. Those dollars added up to over $200, we chipped in some, and sent ALS a check in honor of Tom.

When we stopped by to see them and to find out the right contact information at ALS, Tom was where he always was -- in the middle of their lives. He couldn't eat or communicate without a fancy computer, but he was with his family. He "typed" a message to me using his eyes. The timing was a bit off and his answer of "yes" to an earlier question came out when I asked his three-year old son Zach "Lulu (their tiny, cuddly dog) isn't afraid of me, is she?" We had a chuckle over that.

Ashley commented the family is full of life and love. They do not sit around feeling sorry for themselves, but instead embrace their love for each other.

Tom's brain was fully functioning up until the end, but nothing below his eyebrows worked. It is hard to imagine a worse fate than being trapped inside your own body.

Friends and neighbors tried to fill in best as we could -- shoveling snow, raking leaves, hugs, hanging Christmas lights, more hugs. We all felt so helpless we wanted to do anything we could to ease their burdens since we could not do the one thing they wanted most: cure Tom.

In June 2014, word came that Tom was nearing the end of his life. It happened while we were in California. The memorial service came a month later. His daughters played the piano. Karolina and his brother spoke with such eloquence. Just as they had been during Tom's illness, they showed a grace that is too rarely seen in our lives. It was an uplifting and inspirational service.

Again we donated to ALS, this time in Tom's memory.

Then ALS became huge news through the ice bucket challenge.

When we saw Karolina she told us about her experiences with the ice bucket challenge. She spread the challenge from the president of her alma mater at MIT to the president of the school where she is now teaching, and where Tom had been a faculty member years ago, The Hun School. They helped raise more money so that others may have a better outcome than Tom.

The family is such an inspiration for how to live in the face of the impossible.

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