A dancer's final turn
By Yvonne Abraham
Globe Columnist / January 4, 2009
All chronic illnesses are cruel, but ALS is downright sadistic.


For Catherine Royce, the disease made its first subtle claim on her spectacular life about eight years ago, cramping and weakening her left hand. She'd been picked off from the crowd - amyotrophic lateral sclerosis is a 1 in 100,000 calamity - for reasons nobody understands. Since then, ALS, or Lou Gehrig's disease, has been claiming the rest of her body bit by bit: her right hand, her upper arms, her feet, her ankles, her legs, her diaphragm, her throat.

Dressed in a green turtleneck, stylish glasses, and delicate earrings, Catherine reclines in her tall wheelchair in a cozy sitting room at The Boston Home, a Dorchester residence for people with neurological diseases.

She heaves up her right shoulder to help open her lungs. Her voice is faint and shallow. She manages only a few words at a time, stopping often to inhale deeply from an oxygen tube.

The room fills with the whoosh of those heaving breaths. Outside, the color drains from the sky, and the setting sun casts a pink glow on the snow. This is probably Catherine's last winter.

"I feel very tired," she said. "I am very appreciative of how hard my body has served me and I have a deep compassion for how tired it is. . . . I've come to the realization that my body is too tired to have a normal life, and really wants me to give it a break."

The Catherine Royce whose body did amazing things as a member of a modern dance company is still in there. So is the urban pioneer who, with her husband of 33 years, lovingly restored a falling-down, boarded-up house in a neglected Dorchester neighborhood long before it was the thing to do. So is the woman who once ran the historic Strand Theatre. And the wry, adventurous world traveler who loves Red Rose tea and Le Petite Ecolier biscuits.

That's the sadistic part: Unlike other neurodegenerative diseases, ALS doesn't affect cognition. Catherine, 60, is acutely aware of every incremental loss. The disease that will kill her has left her mind untouched, even as that mind grows more isolated.

A few years ago, Catherine began a series of dispatches on her life with ALS. They started as blog entries addressed to people who had helped her get to India for alternative therapy. They have just been collected into a book.

The letters lay bare her frustrations and joys as ALS advances. Her missives are smart and funny and incredibly sad. In them, she is both utterly alone with her atrophying body and surrounded by people who adore her.

She is terrified at what lies ahead, and grateful that the disease that has so ravaged her body has also given her an intense sense of herself and of God.

"I sometimes ask," she writes, half-jokingly, "why God couldn't have given me a miserable life, one I would gladly leave?"

She is near the end of that life now, and though there is still plenty to joke about, she brims with sadness at the separations to come.

"I will say what may turn out to be a premature goodbye," Catherine writes in her book's last entry. "You know the path I am on. I feel the urge to continue down the path more insistent every day."

Her book, called "Wherever I Am, I'm Fine" will be launched at a big party at the Boston Home on Jan. 22. Catherine jokes that she'll be there sporting a tiara, like in an episode of "Queen for a Day." She'll autograph her books, too - with a thumbprint, "or some other digit."

Jan. 22 is a long way off, given how quickly her disease is progressing. But she tries not to worry about that.

"One way or another," she said, "I'll be there."

Yvonne Abraham is a Globe columnist. She can be reached at Abraham@globe.com.

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