Catherine Royce, 60; documented travails, triumphs in ALS battle

"Every day I choose not only how I will live, but if I will live," she said in an essay National Public Radio broadcast in December 2006 in its "This I Believe" series. "I have no particular religious mandate that forbids contemplating a shorter life, an action that would deny this disease its ultimate expression. But this is where my belief in choice truly finds its power. I can choose to see ALS as nothing more than a death sentence, or I can choose to see it as an invitation - an opportunity to learn who I truly am."

Picking the latter, she extended that invitation to family and friends through a series of extraordinary letters that were collected in the book "Wherever I Am, I'm Fine," published in the final months of her life. As much an exploration of the soul as a chronicle of the ravages illness wrought, her writings became a four-year meditation on how to live deeply while dying gradually.

Ms. Royce, a former deputy arts commissioner for the City of Boston, died Monday of complications from ALS, commonly known as Lou Gehrig's disease. She was 60 and spent the past 16 months in The Boston Home, a care center about a mile from where she lived for 30 years in a Dorchester Victorian she had meticulously restored with her husband, Scott Nagel.

"ALS is an invitation to a conscious death," she wrote in an April 19, 2006, letter. "I can choose to accept the invitation or decline it. This choice is not like a fork in the woods, where choosing one direction means forsaking the other. This choice is more like sailing into the wind. Some days I tack in one direction and some days in the other. On most days, however, I lean toward acceptance. But I must ask myself a practical question: Why have I been given so many years to watch myself die?"

To some, the answer lay in how she had lived since 2001, when the symptoms of what was diagnosed two years later appeared. Teaching by words and example, Ms. Royce gave voice to the turbulent emotions the disease inspired, from rage to tears to the kind of peace few find.

Against the backdrop of treatment - meditation and spiritual practices combined with clinical trials of experimental medication - she experienced moments of clarity and insight she shared with friends by e-mail or blog.

"You know how busy people often say that they long to slow down? With me, there is no hurry, ever," she wrote in an Oct. 25, 2006, letter. "I used to find this frustrating. But I guess over time I have just gotten used to it . . . I used to tell people I couldn't slow down. I had too much to do. Now I see I needed to stop kidding myself. Slow ... is ... good."

Life used to be faster. Born in New York City, she was the oldest of four children. Her father was a teacher whose sabbaticals took the family from their home in Andover to Arizona and Singapore. She wrote in her book that, including boarding school and college, she moved 21 times in her first 21 years.

Graduating from Wesleyan University in Connecticut in 1972 with a bachelor's in humanities and theater, she stayed in constant motion.

"She went and worked on a kibbutz in Israel, she lived in Paris for a while," said her sister Becket Royce McGough of Pittsboro, N.C.

One trip took her to Palo Alto, Calif., where a bookkeeping job brought her to the company where Nagel worked. When she moved to Boston in the mid-1970s to perform with dance companies, he packed his belongings in a U-Haul and followed. They married in March 1975 and bought their house in Dorchester two years later.

"If you saw our wedding pictures, she was an absolute beauty," he said. "And she was incredibly bright. She graduated with honors from Wesleyan and went back to school to earn an MBA. She could study anything and understand it."

Ms. Royce became executive director of the Strand Theatre in Upham's Corner in 1985 and the following year was named a deputy commissioner in Boston's Office of the Arts and Humanities, bringing to both roles her background as a dancer and enthusiasm for the performing arts.

"Dancers in Boston used to talk like victims," she told the Globe in 1987. "People were doing things to them. Now they're saying, 'We're an empowered group of artists. We can articulate our goals.' "

In 1989, she founded a consulting firm and worked with groups that included The Boston Foundation, The Boston Globe Foundation, and ARTS/Boston.

While working as a consultant, and helping raise her children, Owen Royce-Nagel of Boston and Galen Royce-Nagel, who now lives in Newcastle Upon Tyne, England, Ms. Royce graduated from Simmons College in 1994 with a master's in business administration.

"The thing that always comes to me about my sister is what a great mother she was to her kids," her sister said. "She really loved them, and they adored her. She lived for those kids."

During the past year, the opportunity arose to collect her writings for publication and "this garden of friends sprang up, and we got the book together," said Sister Bridget Haase, spirituality coordinator at The Boston Home.

"Wherever I Am, I'm Fine" begins with a trip to India for healing, and it details Ms. Royce's return to the Dorchester house and neighborhood she loved. Though she subsequently composed two more letters that are posted on the updates section of her blog, www.sendcatherinetoindia.com, the book ends with a letter she wrote last summer on Aug. 27.

"Let me go where my heart tells me to go. Let me say goodbye and thank you for all your attention and love. If there is more to tell you from the luminescent path, I will try to communicate it. It just may not be in this form. Here is what my letters to you these past three and a half years have taught me. Wherever I am, whatever I am doing, whatever is happening to me, I'm fine."

In addition to her husband, two children, and sister, Ms. Royce leaves a brother, Tripp, of Portland, Ore., and a sister, Amanda Royce-Hale of Des Moines.

A service will be announced.