Susan Margoles cannot utter a word, yet she has become a spokesperson for the severely handicapped. She cannot move a muscle in her body, yet she has moved a state bureaucracy. She does not have the strength to depress a typewriter key, yet she has written an award-winning children's story.
All of her writing and communicating is achieved by a laborious method of her operating a computer with eyebrow movement.
Margoles is a victim of amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig's disease, a progressive illness that eventually steals all muscle control from its victims, as it has from Margoles. But total paralysis has not immobilized her. She is a powerful presence, a high-energy achiever. And her ideas just might revolutionize the treatment of the severely disabled across the United States.
From her bed she has created the Minnesota Home Care Advocacy Program, an organization that lobbies for more and better home-care programs for the severely disabled. To spread the home-care gospel, Margoles visits the disabled in hospitals. To see her aides carry her from her St. Paul apartment to the van that takes her to various hospitals around the Twin Cities, it looks more like she's off to get help than to give it.
Ten years ago she was an actress, nightclub singer, and social activist. During the height of the Wounded Knee trials, she taught creative writing at alternative schools established by the American Indian Movement (AIM). One day, she tried to start her car after leaving work, but her thumb was too weak to turn the ignition key.
She visited several doctors, who put her through a series of neurological tests to determine the cause of her loss of thumb control. After months of such testing, none of the doctors was willing to give her a diagnosis.
"When I asked my doctors what I had," she explains, "they became extremely evasive. Finally, I went to the Mayo Clinic. They told me the truth - I had ALS - and as difficult as that was to hear, I was glad that someone was finally being honest with me."
ALS is almost always a fatal neuromuscular disease. Typically, victims become weaker until they are unable to walk, move, swallow, speak, or even breathe. It is the disease that afflicted Senator Jacob Javits and actor David Niven, among others. It is four times more common than muscular dystrophy and at least as common as multiple sclerosis.
Susan suffered from the anger and denial that inevitably accompany the revelation of the life-threatening nature of a disease. After the initial diagnosis, she went home and, in a blind and burning anger, burned all the tape recordings of her singing.
"I was angry," she explains, "and when the implication is that you only have two or three years to live, it doesn't seem as though there is much reason to keep a demo tape. Singing was very important to me, and destroying those tapes was like ending a part of my life. Later, as the disease progressed, I lost my voice - it was as devastating as losing the use of my
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