Copyright 2005 The Chronicle Publishing Co.
Data in Image
The San Francisco Chronicle
AUGUST 27, 2005, SATURDAY, FINAL EDITION
SECTION: DAILY DATEBOOK; Pg. E1; LIFE STUDIES
LENGTH: 951 words
BYLINE: Marianne Costantinou
Everything seems so idyllic in suburbia. The manicured lawns. The tended homes. The clean streets. Schools are good. Crime is low. Life is as it should be.
The Shoemaker family lives in a tidy rancher on a tidy street here in Moraga, a tiny town in Contra Costa County, just past the Caldecott Tunnel, beyond even a view of the city.
Greg, 47, works as an account executive at a title company. He has red hair and a red beard, oval gold-framed glasses, and is of average height and average weight. His wife, Stephanie, 44, is a small brunette who works as an administrative assistant for a local general contractor. They have two blond children, a boy and girl, named Ian and Fiona. The children are twins. Today is their ninth birthday. Also in the family are Minnie the dog and Misha the cat.
To meet the Shoemakers is to believe that you've just met the quintessential American family living the American dream. And in a way, that's true. Because no family is without its sadness and the dream is by its nature an illusion.
Behind the facade of this loving family is tragedy. Greg is dying of a horrible disease. It's called ALS, amyotrophic lateral sclerosis, but it's better known as Lou Gehrig's disease. About 30,000 people in the United States have it. No one knows its cause, but the prognosis is all too certain.
"There's no happy ending," says Greg, who speaks in a slow, high-pitched monotone, the words coming from deep in his throat because he can no longer fully control his tongue or the muscles around his mouth. "Everybody who gets it dies. Very quickly."
One by one the nerves that control Greg's muscles will die off, and the muscles will atrophy from disuse. His speech is already mostly gone. He can still chew and swallow, but only if he cuts his meal into the tiniest pieces, and even then a meal that used to take him five minutes to devour now takes him an hour. Just this past week his left wrist failed him, leaving him unable to unscrew a bottle cap or carry a grocery bag with both arms. He can still drive and walk, but soon those abilities will also abandon him. Eventually, he says without a hint of self-pity, he will become paralyzed. He will probably die when his diaphragm gives out and he's no longer able to breathe.
The lifespan is two to five years after diagnosis. Greg was diagnosed in October.
What Greg considers almost the worst aspect of the disease is that his mind will not be affected at all.
"It's one of the cruel things about the disease," he says. "You have a front-row seat to your own demise."
As Greg speaks, his wife and son occasionally translate. The kids have been told about the disease and what to expect, but it's still unreal to them, Greg says. It kills Stephanie, who sometimes bursts into tears as Greg explains the disease to a visitor.
If not for the circumstances, an onlooker would almost be jealous of the Shoemakers. The children are beautiful and well-behaved, their home cozy, and the couple obviously very much in love.
Greg and Stephanie met 15 years ago at work, when they both were at a graphics design studio in San Francisco. Stephanie was born with cerebral palsy, which affects her balance and gait. But Greg was blind to her physical disability.
"She was so beautiful, on the inside and the outside," he says, his mouth agape in a smile.
Within a few months they were living together. Twelve years ago they married. Soon after the twins were born, they bought their house in Moraga.
Greg went to the doctor in September because his speech was starting to slur. He hadn't paid much attention to it, but his father-in-law, who hadn't seen him in a while, was alarmed. He thought Greg had suffered a mild stroke.
An MRI ruled out a stroke or a tumor. The neurologist suspected ALS, and sent him to specialists in the disease at UCSF. After a battery of tests, their worst fears were confirmed.
Until this past week, Greg showed up for work each day at the Montclair office of the Old Republic Title Co. When he met clients, he'd hand out two cards, his business card and this introduction:
"Hi. My Name is Greg Shoemaker. I have a disease called ALS (more commonly known as Lou Gehrig's Disease). The Disease Affects My Ability to Speak, but my ability to think and reason are quite normal. The disease is not transmissible to others. Please try to be patient and understanding while I am communicating with you. Thank You!"
With his speech now mostly gone, his boss gave him the go-ahead to work from home and to use e-mail and a TTY phone to communicate with the office and with clients.
His employer promised Stephanie that they would keep Greg on their medical insurance plan. This is news to Greg. Stephanie wipes away tears.
Why is she crying? This is good news, no?
"I can't believe people are that nice," she says.
Others have also been moved by the Shoemakers' situation. A Montclair real estate agent threw a fundraiser a few months ago and set up a trust fund to help pay for some of the expenses, like a 24-hour caregiver for Greg when his disease advances, and for college for the kids.
"It's the hidden blessing," learning how much people care, Stephanie says.
Greg says he's grateful that he has enough time to say goodbye to friends and family, and to watch his children grow up a little bit more.
"I used to ask 'Why?' " he says. "What's the use? It doesn't do any good.
"Now I just want to enjoy my family and what time I have left."
Contributions to the trust fund can be sent to Gregory Shoemaker ALS Fund, California Savings Bank, 1998 Mountain Blvd., Oakland, CA 94611.