By Melinda Welsh
This article was published on 10-23-08.
Update on a local doctor with Lou Gehrig’s disease
“Ruleboy lives” received a giant response from readers, hundreds of whom wrote me and Marty to tell stories about their own loved ones who faced similar daunting circumstances. Many asked for an update on my brother’s condition. On the eve of a big ALS fundraising event this Saturday, it seemed time for me to do just that.
In the early years after his diagnosis, Marty, now 54, considered his disease an invitation to live life to its fullest: to travel the world with his wife Maureen, to experience things he hadn’t before (like serving as a doctor volunteer at a medical clinic for the poor in Mexico), to exalt in having been born.
These days, my brother is experiencing the shutting down of his body, a continued and predictable physical decline. Getting out of bed in the morning, taking a shower, working a bit on the computer answering e-mail—all are now utterly exhausting. Formerly athletic, Marty has little control over his arms, legs and torso now. His new ride is a magic wheelchair—it speeds, it elevates, it reclines. Increasingly, he uses a digital voice machine to speak. He can get depressed about his situation; nobody blames him.
Marty can’t travel much anymore, except for day trips, so family and friends go to him. In fact, Marty’s clan—Maureen, his two grown children, five siblings and extended family of friends and former colleagues—seem lined up like airplanes on a runway to visit him these next months.
Somehow, my brother continues to inspire with his intelligence, sense of humor and trademark blunt honesty. Nicknamed “Ruleboy” long before his diagnosis, he wakes up each morning and reads “The ALS Rules,” a list of commandments he created for dealing with his disease. Most of them focus on the Zen of staying in the present, on “what I can do, not what I can’t do.”
This Saturday, October 25, hundreds of people will gather in William Land Park at 11 a.m. for the Sacramento chapter’s annual Walk to Defeat ALS. From his wheelchair, my brother will lead a team of “Marty’s Marchers” on a lap around the park to raise funds for those stricken with ALS who don’t have the resources and support that he does. Basically, Saturday will be an attempt to confront the suffering of others with positive action.
As a journalist, I want to ask ALS patients—from what depth of character comes the courage to face each day? As my brother’s sister, I already know.