The Story Behind My Ice Bucket Challenge

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Lori was my choir buddy. I can’t say that we were good friends, but we sat beside each other every Wednesday night at choir practice and again on Sunday morning during the church service. I would have liked to have been her friend, but I was the preacher’s wife, and hardly anybody in the church my husband was serving seemed to want to get close to me on a personal basis. Like others in the church, Lori was friendly to me, but kept things at a safe arm’s length from me, not wanting to get too close.Lori had a beautiful alto voice, and I was able to carry the harmony better with her voice near my right ear. Lori was probably ten years younger than I was – she had a seven-year-old daughter- while my sons were already teen-agers.

One Wednesday evening in choir practice, she began rubbing her left arm. She said that it was tingling and felt like it had fallen asleep, and she couldn’t get it to “wake up.”  All during choir practice, she was either rubbing her arm or gently shaking it, trying to get the prickly feeling to go away. I didn’t think anything of it. I had just gotten over a bout with carpal tunnel syndrome, and suggested that she might have the same thing. The next week at practice, she said that the tingling was still there, and was now in both arms. She had a doctor’s appointment the next day to try to find out what was wrong.

During this same period of time, one of the library volunteers where I was a branch librarian told me that her brother had just died, and she needed to take a couple of days off. When I asked her how he died, she told me that he had ALS. Noting the blank look on my face, she explained, “Lou Gehrig Disease.” I had heard of it, but I really didn’t know anything about it. She explained to me what it was and shared with me how her brother had suffered and died. I was completely taken aback – I knew that the disease didn’t have a cure, but I had no idea how it attacked and killed. She took her days off for her brother’s funeral, and thoughts of the disease became hazier and hazier as days passed and we had other, more pressing matters to attend to at the library.

Wednesday nights at choir practice, Lori would give me an update on her doctors’ visits, how they  were shuffling her around from one to another, all puzzled over her symptoms, and thinking that she might have MS. She was not getting better, and was now experiencing weakness in both her arms and legs. An avid runner, this was difficult for her to take, because she was having trouble keeping up with the exercise that she loved. Then, the Wednesday night choir practices and Sunday church services would come and go without her being in the choir loft every Sunday. She said that she was just too tired.

At this same time, my husband got the nod from the District Superintendent of our church district that it was time for him to move to another church. I dropped out of the choir, began planning to move, and turned in my letter of resignation to the branch library.  In June, we left the little church where we had been for three years and moved across the state to our new home.  I didn’t forget about Lori, but my life was taking a new turn in a new location, and thoughts of her came to mind less frequently. It was sometime during our first year at our new home that one of our former church members phoned us.  As I asked her about different church members and was catching up on what different ones were now doing, I asked about Lori. Sadly, the phone conversation took a solemn turn as my friend told me that Lori was now bedridden most of the time with ALS, was unable to do anything for herself, and was having difficulty eating, drinking, swallowing, and breathing. It was not long after that we received word that she had died. I remembered the story my library assistant had told me about her brother’s death, and my heart broke for Lori, thinking about how she must have suffered, and how frightened she must have been. I have never forgotten her, and whenever I hear anything about ALS, the vision of her precious face and the sound of her beautiful voice fills my memory.

And so, in honor of Lori, I let my friend, Pennie, dump a bucket of icy water over my head last week. The shock and chill was nothing compared to what I know Lori experienced with ALS. And I wrote a check and sent it to ALSA.

Some way, somehow, somebody must find a cure for this disease!

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