Words to Live By
A voice for joanie gives a voice to all
When I asked Shirley Fredlund how she obtained volunteers for Voice for Joanie, the organization she started in 1990 to help people with ALS (Lou Gehrig’s Disease), she says, “If you know me, you’ll be a volunteer, eventually.” Sitting at her dining table in New Milford, laden with homemade decorations for the upcoming annual fundraiser, I already felt at risk.
Voice for Joanie provides ALS victims with the essential ability we all take for granted—to be able to communicate our needs, feelings, and thoughts. “What could be more isolating than losing your ability to speak or to write?” Shirley asks, rhetorically. Her interest in people with ALS started when her close high-school friend, Joanie, contracted the disease and after a while could communicate only with her eyes. Wanting desperately to help her, Shirley made a letter board—she still has it—which contained the alphabet, printed in four rows. She would hold the board in one hand as she ran the index finger of her other hand across the rows of letters until Joanie blinked. And then the next letter got blinked, and the next, until a message was finally spelled out. It was an arduous process. “Sometimes I forgot where we were, and we had to go back,” Shirley admits.
Enter Dewitt Zuse, who had developed a computer program people could operate by blinking, an unbelievable advance. Frank, Shirley’s husband, worked for IBM, and was able to get a computer for Joanie. Shirley was elated. Soon her friend would be able to communicate whole sentences in minutes. But Joanie died four days before they were to install her computer, a fact that still causes tears to pool in Shirley’s eyes.
Now, 23 years later, Shirley’s committed volunteers outfit patients with computers and train them to write and speak (via computer voice). They can also send emails and texts and use Skype, the things that we all do with computers, but with the blink of an eye. One of her clients, Paul, used his computer to write a book. Currently, volunteers serve approximately sixty people with ALS, over nine hundred since Voice for Joanie started. In addition to computers, volunteers will attempt to see to other non-medical needs. “How can you say no?” Shirley asks.
Coordinating this effort is a fulltime job, one for which Shirley receives no compensation. Nobody at Voice for Joanie is paid. I found myself thinking—we all try to volunteer, but how many of us volunteer fulltime? I was impressed.
Shirley showed me photos of some of the people she has helped over the years. One was of a handsome young man named Bobby, who was only 36 when he contracted the disease. No one knows why, but what used to be the disease of older people now includes men and women in their thirties and forties. And she showed me a volume of very moving thank-you letters that the two of us had to heft onto the table. It made me see why Shirley does what she does. Her work affects people’s lives in such a powerful and immediate way.
Ninety-five percent of Voice for Joanie’s funds go to the purchase of computers ($17,000 each), since the group pays no office rent (Shirley’s living room) and no salaries. With funding from a variety of local foundations, Shirley does not seek government support. She does not want to be told whom she can serve and in what geographic area.
In one interview with a potential donor organization, a board member reported that he couldn’t justify the requested funds. “That’s okay,” Shirley told him. “But do one thing for me—get through the rest of this meeting without saying anything.” The man agreed. Fifteen minutes later, frustrated, he picked up a pencil. “Oh, no,” Shirley said, “You can’t write either.” Half an hour later, she had her donation.
The Voice for Joanie brochure says this: “Imagine being unable to speak. … Suppose you could not let anyone know that you were cold, hungry, or in pain. … Envision never being able to say ‘I love you.’” Shirley Fredlund is determined not to let this happen to anyone.