Wherever I Am, I'm Fine, which was published a few months ago.
A photo of Catherine Royce from the jacket of her book,
Courtesy of the Royce-Nagel Family
Catherine Royce poses with her family in 1995, during healthier days. Clockwise from left: husband Scott Nagel, son Owen Royce-Nagel and daughter Galen Royce-Nagel.
Catherine Royce poses with her family in 1995, during healthier days. Clockwise from left: husband Scott Nagel, son Owen Royce-Nagel and daughter Galen Royce-Nagel. Courtesy of the Royce-Nagel Family
Courtesy of Galen Royce-Nagel
Catherine gathers with family and friends on March 28, two days before she died.
Catherine gathers with family and friends on March 28, two days before she died. Courtesy of Galen Royce-Nagel
In December of 2006, Catherine Royce contributed an essay for NPR's "This I Believe" series. She had been a dancer, arts consultant, theater manager and deputy arts commissioner for the City of Boston. In 2003, she became one of the 1-in-100,000 people diagnosed with amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease.
My friend and neighbor Catherine Royce died recently. It was her well-considered choice.
Choice was important to Catherine.
"I believe I always have a choice," she said two-and-a-half years ago in her NPR essay. "No matter what I'm doing, no matter what is happening to me, I always have a choice."
There's a deep irony here. Catherine certainly didn't choose to get ALS. And she had no choice as the disease stole away her ability to walk, type on a computer, feed herself, talk above a whisper — and at the end of her life, breathe without sucking on an oxygen tube every 15 seconds or so.
As the losses mounted, Catherine considered — again and again — whether to choose life.
"Every day, I choose not only how I will live, but if I will live," she said in 2006. "I have no particular religious mandate that forbids contemplating a shorter life — an action that would deny this disease its ultimate expression."
But until this spring, Catherine kept finding reasons to live. As she put it, she opened herself to other possibilities.
"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," she said.
Catherine poured forth those lessons, using transcription software, in a series of essays that she saw published a few months ago in a volume called Wherever I Am, I'm Fine: Letters About Living While Dying. It's as eloquent a testament to life as you'll find.
But as breathing became more and more difficult, Catherine became anxious and frightened of dying. Her fear culminated in an event that happened six weeks ago. She wrote about it in a blog posting on Feb. 24 — her last, as it turned out.
A nurse was filling the vaporizer on Catherine's oxygen machine. Something went wrong, the machine shut down. Soon three nurses were in the room, frantically trying to restart it. They couldn't hear Catherine's feeble voice as she tried to tell them she was running out of breath and they should hook up the spare machine. She was insane with fear, she wrote later, and knew the game was up.
As she felt her chest grow cold and closed her eyes, she experienced something others have described at the threshold of death. Let me quote from her blog:
The scene behind my closed eyes was filled with a brilliant white corridor featuring a right-hand turn at the end. Feeling curious and no longer afraid, I started to walk down the corridor — no wheelchairs here. At that point, I heard one of the nurses say, "There it goes."
The machine started up again. Catherine was pulled back to life.
After that, she wasn't afraid anymore. She began planning her death — a deliberate one with family and friends around, not one that would occur because a machine suddenly malfunctioned.
It wasn't easy to arrange. Some around her felt strongly it was wrong — and they told her so.
A lawyer for the nursing home was consulted. He said in this case, Catherine's decision would not be euthanasia, which is illegal in Massachusetts, because no one would be injecting a drug to end her life. Instead, the oxygen level would be gradually turned down, while a morphine drip would keep Catherine comfortable and calm. She would simply be putting aside the technology that kept her tethered to life.
Catherine chose the time. It was when her daughter, Galen, could come home from England, where she's studying medicine.
On the appointed morning, her loved ones gathered. Catherine was aware and engaged during the two-hour process. Eventually she dozed off. And here let me quote again from her last essay:
What can I tell you about the bright light? It really is there. I saw it. I can in no way guarantee that you will see one, too, or that I will see one again. But I hope we are all so blessed.
Catherine Royce was 60 when she died on March 30.
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