Margaret McGuire is 91 but she doesn't look or act it. A wisp of a woman, she's got a will of steel. Four mornings a week she leaves her Arlington condominium and drives to New England Sinai Hospital in Stoughton to spend the afternoon sitting by the bed of her only child. She holds his hand. She wipes his brow. She shows him a letter board and points at consonants and vowels, waiting for his eyes to blink once for yes and twice for no. And for three hours, letter by letter, word by word, she helps him communicate.
She fights old age, ill health and a steady stream of traffic to do this. Mother love. There's nothing like it.
"I try to get here by noon and leave by three because the traffic after three is terrible. And I try to stay three car lengths between me and the car in front of me," she said the other day while waiting in the corridor as nursing aides changed and repositioned her son. "That's what you're supposed to do, but you know how it is. People see all that space and pull in front of you and cut you off." The drive, she said, takes a lot out of her. "I go fast. I keep up with the traffic but every day I say my prayers."
Her son Paul is 61. His illness takes a lot out of her, too. He was diagnosed with amyotrophic lateral sclerosis, Lou Gehrig's disease, six years ago. He used to work in construction. He used to own a Laundromat. The disease came out of the blue. No cause. No cure. Sorry, the doctors said, there's nothing we can do.
Two years ago, when he was at the VA hospital, he was put on a respirator that now keeps him alive. It is a lonely existence. He can't eat or talk or laugh or lift his head or wipe his tears. He can't do anything except lie in a bed and blink his eyes and move his silent lips. One disease did this, a disease that strikes more than 30,000 Americans a year.
No one understands what triggers ALS. It strikes randomly and it strikes in clusters. It attacks elder adults but it ambushes younger adults, too. It is consistent only in its course: It weakens, then paralyzes, then kills.
Paul's mother is his comfort. He's calm when she's with him. When she's not, he spends his time watching TV and trying to be understood. His mother understands.
"You never know what life's going to bring," she said. "No one knows what's going to happen to them." She spent Thanksgiving day with her son. She plans to spend Christmas Day with him.
When he was first diagnosed she moved to Stoughton. But the disease progressed and Paul went from home to a hospital so she went home, too. "I get my support from the Arlington Senior Center."
Her life is different from how it used to be.
"My whole life is around this. I used to work. I started off as a waitress and then I was a hostess and at the end I was in the catering business. I used to have every holiday at my house. My house was always full of people, coming and going, eating and drinking. And when my relatives got sick - my mother was one of 12 - I took care of them. But they're all gone now. I've outlived everybody. I have nobody left."
Two years ago, she was diagnosed with colon cancer. "This year I'm having some trouble with my knee." The doctor wants to operate but that would keep her from driving and from Paul.
She can live with the knee. It doesn't worry her. What worries her is snow. "Last year I could shovel out my own car. But this year, I don't know what I'm going to do. When I was young, there were people knocking on my door eager to make a little money, asking if you wanted them to shovel."
These days no one knocks on her door. But that has yet to keep her inside. She just bought a new battery for her car and four new tires to get through whatever winter brings.
Winter is hard. Life is hard. But it's not hard for her to see Paul. Hard would be not seeing him, she said, smiling and walking back into his room.
Copyright © 2001 LexisNexis, a division of Reed Elsevier Inc. All rights reserved.