Sunday, November 16, 2003

I called my mom's house. Andrew's voice on the answering machine. A tape of course, but still startling. Andrew hasn't spoken for months, and will not speak again.
My mother's husband has ALS. Lou Gehrig's disease. There is no cure. The body fails, muscle group by muscle group, and then you die.
Andrew and my mom found each other after losing their spouses to cancer. It was a funny match, in some ways. He's six years younger than she is, a tennis jock, a hard-driving businessman. My mom is a shy, cultured, look-at-this-great-joke-in-Greek on my Bryn Mawr t-shirt kind of gal. Aren't you supposed to marry the tennis pro?, I once asked Andrew. I dated her, he said. I like your mom better. They were so happy together we called them the Teenagers in Love.
In January, Andrew started experiencing speech and swallowing problems, followed soon by loss of sensation in his left arm. It persisted, and spread. There is no clear diagnosis for ALS. You rule out other stuff, and you're left with the bad news. By early summer, there was no more doubt. In Alaska this July, Andrew's speech was slurred and he was experiencing leg cramps, but he still managed to hike, kayak, and eat solid food. In September, he was using an electronic keyboard with speech software to talk, but he could beat Lisa in straight sets on the tennis court. He seemed to level off for a while, but the last several weeks have been downhill.
Tonight Andrew typed to me that it's hard to know you are going to die, but it makes it better knowing that you managed to accomplish what you set out to do. I said that he could add grandparent to that list. After a decade with my mom, Andrew is a no-asterisk grandfather to Elijah and Syd and to my sister's girls. He smiled. His blue eyes were shining the way they used to.
The other morning Sydney came out to breakfast and said she had a dream that Andrew got sicker, and sicker, and then he died. What do you say to a nine-year-old? I hugged her and said she was dealing with the truth in her dream.
Andrew wants people to know about this disease. That's why he let me write about him. He wants somebody to find a cure. It will come too late to save his life, but he is determined. His dream is that in some other family, someday, Sydney's dream will not have to come true.

9:03:17 PM    comment []