Catherine Royce: Buoyant Attitude Helps Writer Live with ALS

The Victorian-era novelist George Eliot once decreed, “the strongest principle of growth lies in human choice.

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Catherine Royce (Photo Courtesy of National Public Radio)

Massachusetts-based writer Catherine Royce has lived with ALS for more than four years*, but the disease has not dimmed her creativity. This is evinced in her recent essay that aired on National Public Radio’s (NPR) popular series, “This I Believe,” which gives people the opportunity to discuss a belief system based on their personal experiences. In her essay, Royce tells listeners ALS has given her a choice to live and grow to learn about herself.

“Certainly my most profound personal experience of the moment is living with ALS,” acknowledges Royce, 58, a resident of Boston, where she and her husband Scott Nagel have lived for 30 years. “I realized that, like everything else in life, attitude and perspective are everything. Well, I know that I cannot control what ALS is doing to my body, but I can certainly control how I think about it. If I decide, it’s ‘the worst thing imaginable,’ then it will be. Conversely, if I see this illness as a gift and a blessing, that changes everything.”

One of the blessings that resulted from Royce’s choosing to view her disease in a positive light is deeper relationships with friends. These friendships strengthened when her husband Scott had to go to Iraq for business to work as a defense contractor.

“At a time when I was becoming increasingly dependent upon him, he would need to be away for weeks at a time,” says Royce. Just a year earlier she had been able to drive a car, shop for and cook food, walk, bathe, and breathe on her own. Now all of this had changed. Her husband's overseas trips presented her with a dilemma.

How could she manage, both mentally and physically, without Scott? While contemplating this, a small group of longtime friends proposed a solution. They would care for her. “At first, I found the offer gratifying but overwhelming,” explains Royce. She wondered whether her friends were fully prepared to assist her with daily living tasks such as bathing and shuttling her to medical appointments.

Ultimately, Royce acquiesced to her friends’ offer. “I made that choice,” she says. “The day after my husband left for Iraq, the sewer line to our 100-year-old house collapsed. These same friends redoubled their commitment to me. They not only found a contractor but took turns monitoring the work during the week it took to complete. This choice led me to know love, companionship and much deeper friendship than I had ever imagined possible. It also taught me how to accept care in a way that continues to this day.”

As family and friends serve as important components to Royce’s daily care so do a variety of assistive devices. She uses voice recognition computer software to continue her writing; a walker (for transferring from her wheelchair to her bed); a power wheelchair; an electric toothbrush; a shower chair; a BiPAP machine (a mask that allows users to get more air in and out of the lungs without the natural muscular effort needed to do so); a cough assist machine; a telephone headset; a shower wand, a wheelchair lift and ramp system and a specially equipped van.

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Catherine Royce (center) at home with her family. Top row: Son Owen and husband Scott Nagel. Next to Royce is her daughter Galen.

Royce receives further support from The Massachusetts Chapter of The ALS Association. In addition to using equipment from the chapter’s loan closet, she received a respite grant that permitted her to hire a daytime caregiver while her husband was out of the country. Of the chapter, Royce says, “I am in constant contact with my caseworker. There is no way to quantify how important this is to my sense of well-being.”

“Without trying to be, Catherine has been an inspiration to me and to other patients,” says Joanne Peskowitz, a patient services staffer and social worker with the chapter. “She has a positive outlook, even where there is not much positive going on with her ALS. Catherine is a pleasure to work with; she is open, receptive and proactive.”

Royce’s proactive nature manifests itself in her writing as she maintains an online journal and communicates with family and friends via email. Last fall, one of her narratives, an autobiographical piece titled “Meeting Cathy,” appeared in the online quarterly journal Flashquake. “In college I won awards for my poetry,” she notes. “Since then, I have focused more on prose, primarily nonfiction. There is something deeply gratifying about finding just the right words to explain a thought or describe an experience.” Royce reveals she often learns something about herself and her world when writing.

A friend who regularly reads her online journal suggested she make a submission to “This I Believe.” “As I was writing the essay, I found myself thinking of it as a gift.

Certainly it was a gift to me because it asked me to identify a core belief and then find a way to express it in words. It’s amazing how heartening and fortifying the process was for me. I would encourage anyone to do it—even if only for the pure satisfaction. And then I also thought of it as a gift for anyone who would hear or read it. I hoped they would take away a new perspective on life. I wished that they would see that life is never without hope because hope is a choice we can all make.”

Interestingly, Royce’s first love was dance, not writing. She began studying various dance forms at the age of 6 and “retired” at 33; for almost a decade, she performed as a modern dancer mostly in the Boston area, and her dance company appeared in her home town and New York City.

“Dancers always have to have at least two careers,” she explains. “They dance as long as they can and then, as they get older, have to find another way to pay the bills. Often, in fact, dancers work ‘day jobs’ even during their dance careers. This was true for me.”

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Royce with her personal care assistant Mariana Lopes.

Her “day jobs” consisted of work in non-profits, theater management and city government. At the age of 45, Royce harnessed her creative energies by returning to graduate school at Simmons College in Boston to pursue an MBA. After obtaining this degree, she worked in health care then in business communications. Then, looking to do something completely different, she spent two years selling flooring at retail behemoths Lowe’s and Home Depot.

“Prior to ALS, I had always been an extremely active and independent person,” notes the mother to two grown children, both of whom reside in Boston. Her son Owen is a chef, and daughter Galen works in the ALS Clinical Trials Lab at Massachusetts General Hospital and plans to attend medical school.

Would Royce choose to return to her former life?

“Six years after I felt my first ALS symptom, if anything, my life is richer in every way,” Royce states. She describes a game she occasionally plays with herself. She imagines waking up in the morning where she can leap out of bed and put her clothes on without any assistance. She pictures herself making her own breakfast and walking out her front door to wander in her garden on her own two feet. She envisions a life without ALS. “As much as I would love this fantasy to become reality, I am also aware that I would not want to go back to my previous life. I would lose too much. I am more loving now, more compassionate, more patient, and, yes, wiser and braver.”

To read or listen to Catherine Royce’s essay that appeared on “This I Believe,” visit http://www.npr.org/templates/story/story.php?storyId=6560320.

*Catherine Royce lost her battle with ALS in 2009

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