I was nominated to take the Ice Bucket Challenge, but I’m going to approach this a little differently. Instead of dumping ice water over my head, I’m going to tell you how ALS has had a profound impact on my family and me.
My grandfather, whom I nicknamed Mitchell when I was a little girl, was one of my very best friends in the whole world. He had a very kind face with the most wonderful smile, and when he smiled at me, I felt like the world was a happier place. He loved to read, and I have many fond memories of us spending time reading together. When I was a little girl, he introduced me to Reader’s Digest, and we spent hours talking about articles, comparing our Word Power scores, and discussing topics that should be covered in future articles.
When I was in college, I met a wonderful guy, Alex, and I brought him home to meet my family. Mitchell teased me because he and Alex were political opposites, but they grew to enjoy each other’s company very much. When Alex asked me to marry him, we chose Mitchell’s birthday as our wedding day.
At the wedding, after I danced with my dad, I asked Mitchell to join me on the dance floor. I had chosen The Wind Beneath My Wings because he was my hero, but also because he was always so supportive and encouraging. As we danced, I wished him Happy Birthday and thanked him for sharing his day with us. I also thanked him for being such a wonderful grandpa and for always being there for me.
At my wedding, Mitchell told us that he thought something was wrong with him because he hadn’t been feeling like himself. That day was the beginning of a long and very difficult journey through numerous medical specialties, tests, and misdiagnoses. Through it all, he remained kind, patient, and loving. Our whole family spent that year worrying, wondering, and hoping for a non-catastrophic diagnosis.
Alex and I went away the weekend of our first anniversary. I remember standing at a payphone (it was 1996, after all) in a beautiful hallway in the inn where we spent the weekend. Over the phone, my mom told me that Mitchell has been diagnosed with ALS, or Lou Gehrig’s Disease. She’s a Nurse Practitioner, and I knew this was one of the diagnoses that fell into the catastrophic category, but I didn’t know exactly what ALS was.
Mitchell died on April 4, 1999. Between his birthday/my wedding day and his death, ALS robbed him of his ability to breathe, eat, walk, and talk. It robbed him of his ability to move anything other than his eyes. Because of ALS, he couldn’t walk on the beach, ride his bike, go for walks, hug his beloved wife or anyone else, give kisses, read Reader’s Digest, swim, eat, or any one of a million other things we do during the day without a second thought.
With ALS, the mind remains completely clear. I used to sit with him and hold his hand because it was the only way I could think of to provide comfort and keep him company. I used to wonder what he was thinking. When he’d look at me and give my hand a little squeeze, I could picture the smile that would have been there if ALS hadn’t taken that away, too. It took me back to my childhood, and even to my wedding day, and I hated this disease with every fiber of my being.
He’s been gone 15 years and I still miss him every single day. ALS is an awful disease, and I hope that a cure will be found. I’ll be making a donation to help reach that goal, and I would be grateful if you would do the same.