When Eugene novelist Cai Emmons was diagnosed last winter with bulbar-onset ALS, a fatal condition with no known cure, she and her partner, Paul Calandrino, held each other and cried. One of her doctors cried along with them.
As the two exited the elevator to leave the hospital, Emmons’ neurologist said to her, “I love you.”
Seeking distraction, Emmons and Calandrino took a trip to the mall. She bought a sweater and he bought a candle for the hot tub.
When they checked out, the clerk asked, “How’s your day going?”
Emmons does not know when she will die, but amyotrophic lateral sclerosis, sometimes called Lou Gehrig’s disease, is fatal. Diagnosed with a particularly aggressive form, she already has significant problems with speech, and uses a synthetic voice on a program called The Voice Keeper to communicate. She uses a ventilator at night to help her breathe, and will soon need a feeding tube when she can no longer swallow.
But her heartbreaking diagnosis has brought a new gumption for life and all it continues to offer. Emmons and Calandrino, both writers, have made practical and emotional changes to their routines in order to enjoy every second they have left together.
“Everything has taken on an intensity that I could never have imagined,” Emmons says as we sit on the patio at her home in south Eugene, her computer resting in her lap. She types her responses to questions; her words are then relayed by the automated voice in her computer. “I have had such amazing meetings with friends. People have said things to me that they wouldn’t normally say. I feel as if Paul and I are really savoring small daily things. It is, in that way, a kind of gift.”
Emmons and Calandrino have been living together since 2004. They married Feb. 14, 2021, 10 days after her diagnosis. Friends in the area chipped in to arrange the flowers, cake and music. The ceremony was held under a couple of canopies at their house, with two friends officiating. Planning the event took a total of six days.
Calandrino feels that, despite all of the hardships, his and Emmons’ relationship has actually improved since her diagnosis.
“In every relationship there’s always some kind of baggage, like cobwebs that form in your mind in between you,” Calandrino says. “But it was like this complete cleaning out, immediate and unwilled, of any little problems between us. They just seemed to go away.”
As talking grows more difficult for Emmons, Calandrino has had to pick up the slack in their conversations. When they go on walks or garden together, Emmons will ask him to talk about what’s on his mind.
“I always feel like my thoughts are very mundane, and I’m kind of present, thinking about this rosemary bush or my tomato plants,” Calandrino says. “Her mind is much more interesting than mine.”
In order to relay the contents of her fascinating mind, Calandrino says Emmons has been writing “like a demon,” and that her work has taken on new forms. Emmons, who has a BA from Yale University and two MFAs from NYU and UO, was a playwright and screenwriter before she was a novelist. She has always written primarily fiction, and pulled from topics that interested her. Now, she is sharing her personal experiences with ALS, loss of voice and confronting mortality through op-eds and nonfiction essays. Her op-ed “A writer (literally) loses her voice” was published in the L.A. Times in May, and an article about Emmons’ diagnosis was published in The Washington Post in July. Emmons continues to post frequently on her blog, which covers a range of topics with titles like “How To Be Friends” and “Would We Write If We Were Immortal?”
“These are ideas I would probably talk away if I had the capability and would not need to write about them,” Emmons says.
She still continues to write fiction, but one of her upcoming books, Unleashed, is what Calandrino calls “metaphorically autobiographical,” because it concerns a woman who undergoes a serious and life-changing transformation. Her other in-progress book, which is not yet titled, is about a woman getting on a jury with her ex-husband. Both will be out in 2022. And a third book, Sinking Islands, will be published in September 2021.
Calandrino says the 2022 book releases are moving faster than usual, but that the reality of Emmons’ condition has made her and her publishers feel a “sense of urgency” — Emmons to write as much as she can, and her publishers to get the work out.
Feeling the same pull to act are Emmons’ loved ones. Emmons says she’s been reconnecting with lots of old friends over Zoom and email during the last several months. And recently, people have been travelling from all over the country to see her and Calandrino. Their home is a revolving door of visiting friends and family.
Many people in the ALS community have come forward to help Emmons following her diagnosis. She has several ALS friends on Twitter, and a man with ALS who lives in Corvallis has come down to visit with her.
A network of friends has taken the ALS Caregiver Bootcamp, a program designed to assist people caring for someone like Emmons. And when things get worse, Calandrino will assume the role of her primary caregiver.
“Many people say they would not be able to face being in my position,” Emmons says. “But you do. You just do.”
In spite of everything, Calandrino and Emmons’ lives have fallen into a harmonious, enjoyable routine. Every day, the two wake up together. The coffeemaker in their bedroom goes off automatically, and they drink it side by side. Emmons goes off to write and Calandrino does his own work, though he is planning to retire soon to spend more uninterrupted time with Emmons. After the working day is done, they go for a walk together or tend to their garden. Then they cook and share a meal, something they are particularly treasuring right now, as Emmons may soon be unable to eat without a feeding tube.
“We’ll just keep going and enjoying every day until the end,” Calandrino says.
Emmons doesn’t know when the end is or what it will look like, and she is in no hurry to find out. She has constructed a beautiful existence these last few months, something that is demonstrated both by her actions and by the earnest way she speaks about the joys of being alive.
“What is striking is how strong the urge to live is,” Emmons says. “I have so much to live for now, as damaged as I am. And I can imagine that feeling persisting through quite a bit.”
Find Cai Emmons’ blog at CaiEmmonsAuthor.com/blog.