Dear Readers, It is with sadness that we share the news of Cai ending her remarkable life on January 2, 2023. She had planned her death for her 72nd birthday, January 15, but ALS had other ideas. Like so much of her life up to this point, Cai...
Wrapping Up A Life
A good writer friend calls me a “completionist” because I insist on finishing a piece of writing even when I know it isn’t any good, whereas she is able to abandon work as soon as she senses it stinks. She is right about me; I can’t bring myself...
Objects
Every day I circle through the ground floor of our house with my walker. My exercise tour! Beginning in the bedroom, where the “cockpit” (aka the bed) is the center of my activity these days, I advance in my ground-gripping slippers, careful step...
Flesh to Soul
My husband and I have developed a new ritual. After I brush my teeth, I sit on my walker in the bathroom, and he brushes my hair. I close my eyes as he strokes and pats and fluffs. I would happily sit there all day under his gentle ministrations...
Speaking Up, Being Big
About twenty years ago I got divorced from a man I’d been married to for over twenty years. As divorces go, it was a relatively smooth one, but it was still one of the hardest things I’ve done in my life: to say aloud that I didn’t think our...
One Life
In the last couple of years, since my ALS diagnosis, I’ve lived two parallel lives. One was the life I’d always been living as a writer in which I devoted my mornings—and often beyond—to writing, followed by taking care of business, running...
Every Day is a Trip
Many of you know that I did a second guided mushroom trip last week, seeking a deeper encounter with death, and wanting to learn how to release my attachment to all I love about life. A tall order to ask of a measly mushroom. I used a different...
Week #5 of “A Brief Pause”
This week’s post is written by Nancy Hopps. I will return next week to tell you about my second mushroom trip I took yesterday, wearing these ruby slippers! Death Can Be “Just Fine” by Nancy Hopps I’ve always had a profound...
Alone Together/Together Alone (Week #4 of “A Brief Pause”)
A month ago, I declared I was taking a brief break from writing this blog, but clearly I don’t seem to be capable of taking a real break! I write now in the midst of a racket overhead from the hammers of the roofers who arrived today, Election...
A Fork in the Road (Week #3 of “A Brief Pause”)
A few weeks ago I realized I needed to simplify my life to maintain focus on finishing my novel-in-progress. That is when I put this blog into what I’ve called “A Brief Pause,” so I would stop writing about matters of life and death and focus on...
A Fiction Outtake–Week #2 of A Brief Pause
In the course of writing and editing any novel, a lot is cut. Numerous reasons lie behind the cutting. The material might be unnecessary or repetitive; the sentences may be lackluster or too showy; the writing might be downright boring. Often...
Nothing Like a Baby–Week #1 Blog Pause
Today is the first day when I am officially on my self-declared blog pause. But, as I promised, I am not going to be completely silent. My sister is visiting now with her daughter, and her daughter’s daughter (my grandniece—who happens to be the...
A Brief Pause
Dear Readers, The time has come for me to make a temporary change in this weekly forum. In order to focus more fully on completing my novel-in-progress before my hands give out, the nature of my posts will be shifting for a couple of months...
Normalizing (As Much As Possible)
A few years ago I attended the wedding of a former boyfriend. Shortly after we split up, he came out and, following a brief rift, we became close friends. I was delighted to be celebrating his union with the wonderful man he was marrying. As the...
On Death and Publication
Today, Tuesday September 27th 2022, is the official publication date of my new novel, Livid. This is the second of two novels of mine that have come out this month. The first was Unleashed, which was published on September 6th. Needless to say, I...
What to Read (and How) When You’re Dying
All my life, I’ve enjoyed reading. As a kid, after I learned to read to myself, I would close the door to my room, and lie on my side on the bed, elbow propping up my head, lost in a book for hours. Though reading was encouraged by my family, the...
Finding The Humor in Death and Dying
https://www.today.com/health/essay/als-fatal-diagnosis-humor-rcna47370 I hope you enjoy today’s post which is an essay I wrote for Today.com about humor and death!
The Necklace (and Coffee for Cops)
This week’s post is two-pronged. Before I launch into “The Necklace,” I wanted to add an addendum to last week’s post, “When A Woman Can’t Make Nice.” I remembered this incident shortly after I posted and it seemed too late to add it then. But it...
When A Woman Can’t Make Nice
For about a year I haven’t been able to speak—something I have written about extensively in this blog—and for a year and a half before that my speech was compromised, slow and increasingly garbled. Needless to say, this has presented some...
Why I Love Being Naked
For a couple of years after college I lived with a communal group. We were upstanding people with respectable jobs as therapists, teachers, and architects, but we were free spirits, too, people who liked to do things that pushed boundaries. One...
Becoming a Rorschach Inkblot Woman
My father, a gentle man who was rarely angry, had a face that, when lost in thought, relaxed into a kind of neutrality that made him look stern. My sisters and I were sure he was mad. In a household not given to expressions of anger, it scared...
Finding Flow
It’s early morning and my husband is outside tending to his tomato plants. He moves among them with an electric toothbrush, buzzing the blossoms to encourage them to pollinate and produce more tomatoes. When he’s done, he moves onto the lettuce...
Reinventing a Life
I have recently been watching home videos of my son when he was a year and a half. In one scene he is inspecting a cheese grater composed of several parts. He winds the handle, trying to figure out what it is and how he might use it. He invests...
Insignificance
The recent photographs taken from space with the James Webb telescope—of galaxies and individual stars light years away from us, appearing as they were 13 billion years ago and providing insights into the origins of the universe—are truly...
When Independence Slips Away
I recently returned from a writing residency on the high desert of Central Oregon, a magical place couched between a ridge of low mountains and a dry—in the summer—lakebed. The buildings are situated near a pond with shade trees where all variety...
If I Could Speak Again
I’ve been dreaming recently that I can talk. In these dreams I always know that my ability to speak will not last; it will come and go, so while it’s available I have to speak quickly and efficiently to say everything I need to say. It’s a...
My Psilocybin Trip: Releasing Expectations
A few years ago I read an article about a depressed and anxious psychotherapist who took a guided psilocybin trip. He emerged from the experience considerably calmer and more capable of functioning, with the insight: Show up and be open. His...
The Power of Women
From the very beginnings of my storytelling career, I have been obsessed with the question of what it means to be a woman in a world that privileges men. My first produced play was about two women with ten “genderless” children who return home to...
Love Your Body
In the ten years before the pandemic began, I was regular practitioner of hot yoga. When I first began, the studio offered only ninety-minute classes conducted in a room that was 105 degrees—or more—with 40% humidity, designed to produce maximum...
Memento Mori
My son recently got a tattoo that runs the length of his thigh. It features a beautifully-rendered hour glass with a skull leaking from the top to the bottom. Along the top are inscribed the words: memento mori. This is the Latin phrase that...
Trouble With Endings
I am watching the final day of our vacation begin. The sun illuminates the eastern sides of the tree trunks as if the trees and the sun are conversing. The bay is serene, the water so unrippled it betrays nothing of the activity beneath: the...
It Will Be Hard To Leave
(This post is a day late because yesterday the internet was down!) The last few -weeks have been hellish in this country. We’ve seen the worst of human nature on display, not only in the shooters, but in many of the people responding to the...
Objects and Orangutans
Today I am packing for a ten-day trip to the San Juan Islands where my husband and I will be writing, kayaking, biking, beach-walking, and kicking back while we watch seals and otters, and maybe Orcas, frolicking in the bay. Because we are...
Battling Cancer, Living with ALS
My beloved friend Charlene was recently diagnosed with aggressive breast cancer. A number of years ago she underwent a double mastectomy and a hysterectomy because she had the BRCA gene. These operations are known to radically reduce the chances...
How Much Self Reliance is Necessary?
Despite having lived on the West Coast for decades, I remain a New Englander at my core. Born in Boston and raised in a small town only miles from Walden Pond, I was steeped in New England history and ideas. I read the work of writers like...
The Treasures of Spring Cleaning: Tell Them What They Mean to You
The arrival of spring reliably brings with it the urge to clean up, throw things out, and bring order to the accumulated dust and detritus of indoor living. The urge comes to me in unpredictable waves and must be acted upon immediately before it...
The Power of Birth Stories
I have not met my seven-week-old grandniece, Radley, in the flesh, but I can’t get enough of watching videos of her squirming and cooing, flailing her tiny limbs around and making mini fists. The first of her generation in our family, she is...
What Do You Have To Teach?
A few years ago, not long before the pandemic began, I made the decision to stop teaching and become a full-time writer. I was a little hesitant to give up my affiliation with the university and its creative writing program, but I also knew I was...
Gray Matter Boulevard
My curiosity has always been hitched to the human mind. That is why I’m a fiction writer. As such, I have always been somewhat solitary. However, when the pandemic coincided with the onset of my ALS, which robbed me of speech and made talking...
Pollyanna Sounds the Alarm
People frequently ask my husband—and sometimes they ask me—if I am really as upbeat about my ALS as I appear to be in my posts. When I woke this morning I was asking myself that question too. The answer is yes. My posts express as honestly as I...
Fixer-Upper
In a couple of days I will be having surgery to replace my infusion port which has become blocked by fibrous tissue. This will be the third port I’ve had implanted near my clavicle to transport the ALS drug Radicava. I am hoping the third time...
You Are a Beast
Until the pandemic began, I practiced hot yoga for almost a decade. One day after class a young woman who had been practicing near me approached me in the locker room. She leaned toward me and brought her face close to mine. “You are a beast,”...
Invalid–Or Still On Active Duty?
I am just back from a glorious four-day writing retreat in a desert landscape in central Oregon, where I went with my good friend Miriam. The time was special for so many reasons. The property, which has several cabins for writers and artists, is...
Hello, Baby Radley
Two days ago my niece gave birth to a lovely healthy baby girl. I have not seen her in person, but I enjoy gazing at pictures of her tranquil sleeping face. There is nothing more beautiful and hopeful than seeing a new, unscarred human being. She...
Rituals
Every night, just before bed, my husband puts on my feet the toe socks he gave me for Christmas. One foot at a time, balanced on his chest, he makes sure each toe is in the proper slot. It is one of those activities we execute in precisely the...
Unfinished Business
I am working as diligently as I can on a new novel, but novels cannot be rushed, and at the end of every work day, as I lay down the unfinished manuscript, a thought haunts me. What if I don’t have time to finish this novel and it is...
Body Inventory
I was in college and deeply involved in theater. We were doing an exercise blindfolded, in a dark room, and we were instructed not to speak but to get to know each other by touch—a group grope. Afterwards one of the participants told me he’d...
My Husband Nurtures Me Like a Plant
A year ago, shortly after my ALS diagnosis, my husband, Paul, began to cultivate seeds under a grow-light in his study for the upcoming summer’s vegetable garden. He took to this project with scientific precision, glad to have a focus for his...
Time Out of Time
When I was teaching college-age and graduate fiction writers, I liked to use an exercise called “Braiding Time” to encourage the students to think about the interior lives of their characters and getting closer to understanding their habits of...
For 20 Minutes No One Needs Me: The Relentless Pull of Productivity
Recently I was out of commission for a few days due to an unexpected reaction to a drug I’m taking for ALS. I could do nothing but sleep. I couldn’t imagine I would ever get enough. But each time I woke, I was seized with panic. I had things to...
Either That or Somethin’ Else
Sometime last fall I began to think hopefully about a return to “normal.” We went to the theater for the first time in over a year and were jubilant to get out in public (still masked), greet friends, gather in celebration of art. We had people...
Bobo the Punching Bag: Reflections on Anger
When I was about five years old and prone to temper tantrums, my mother, who had majored in child psychology in college, gave me a blowup punching bag called “Bobo.” Bobo was about my height and was weighted so as to spring back up after...
Alone Together
I first heard the term FOMO (fear of missing out) on a hike in the mountains with some former students and my husband. There were five of us present. After gaining some elevation we stopped for lunch at a small gloriously clear blue lake. As we...
More Love, Please
When I was twenty-seven, living in New York City, and working in film, I was stricken one day by severe abdominal pain that eventually led me to pass out. My boyfriend called 911. The cops came to check things out and called an ambulance which...
Is Hope a Dirty Word?
I would like to dismiss 2021 as a terrible, no-good, very bad year, a year to be sept away and forgotten as quickly as possible. After all, it was a year that began with the insurrection and was quickly followed by my ALS diagnosis. Dire on both...
Shake It Up–Laugh More!
A couple of weeks ago Paul, my husband, and I fell into a delicious sinkhole of uncontrollable laughter. The ventilator I sleep with was forcing my mouth open, so I was waking with an oral cavity so dry it felt as if my tongue and cheeks were...
What It Feels Like To Be Dying
I have been going to the same masseuse for a couple of years now. When I began going to her my body was fit and strong, not a bad specimen for a woman of my age. Now, certain muscles throughout my body have begun to shrivel and atrophy; I have...
Why “Car Talk” Makes Me Cry
It has been decades since I have lived back East where I grew up, but I have been longing recently to return for a visit. It’s not that I haven’t visited over the years of my absence—I have made it a practice to get back East to Boston and New...
Would You Rather Be Deaf or Dumb?
s kids we loved to ask each other hypothetical questions. Would you rather burn to death or freeze to death? Would you rather be blind or deaf? And: Would you rather be deaf or dumb? Dumb meaning mute.
I Have a Fatal Illness–Why Am I Not Despairing?
“I still believe that the unexamined life is not worth living: and I know that self-delusion, in the service of no matter what small or lofty cause, is a price no writer can afford. His subject is himself and the world and it requires every ounce...
Some Thoughts About “Things”
There are two men in our small city who have become familiar figures to most of us. Lean and weathered, they push loaded carts along the streets and sidewalks; unlike most street people they are keen-eyed and determined; they seem to know where...
Where is the Kindness in Fiction?
I have always been a fiction writer at heart, but before I committed myself fully to fiction, I worked in film, writing screenplays and directing films, simultaneously teaching film production and screenwriting. It’s a cardinal rule in...
When the Body Changes, Are You the Same Person?
There is a story my father used to tell about me as a toddler. It was winter and we were outside in the snow, my three-year-old sister on tiny skis, me sitting on a toboggan, both of us bundled in snowsuits. A friend complimented my sister on her...
Recreational Eating
Hooray for the mouth. Sing its praises. Such a versatile capable orifice. Gateway to the stomach, conduit for food and drink. Home to the tongue and teeth. Framed by soft pink lips. The mouth speaks. Sings. Whispers. Shouts. Blows. Swallows...
Expect Catastrophe
I have always loved reading about science. It often makes me wish I’d become a science writer. There is so much wonder and mystery in science, so much that is known and so much yet to be discovered. But I have developed an unfortunate habit of...
Getting Older, Knowing Less
As a novelist, I consider it my job to portray people accurately on the page. I allow myself to fabricate any number of alternative realities, but I must always populate them with recognizable people whose behavior is guided by the impulses...
When Life Narrows
A moment stands out to me from my early forties, possibly my late thirties. I had just gotten pictures back from development—it was pre-digital days—and I was sorting through them to decide which to put in our album. My husband pointed to one he...
Drooling Woman With Inner Life
Back when I was in elementary school, there were always kids who were pariahs. Kids with certain kinds of deformities, or speech impediments, or habits of drooling. We knew we were not supposed to mock these kids, and so we didn’t taunt them...
What’s New as Summer Draws to a Close
When I was a kid and my family was driving back from our annual August vacation in New Hampshire, my mother would always break into song. “On the browning fields the spider spins, and the lambs no longer play, and the cricket now his chirp...
The Seduction of Fire
The crackle and pop, its sensuous mercurial dance, its shifting colors—red, orange, white, blue, purple, green— the mysterious glow of the embers, the impossibility of grasping it in your hand. Fire galvanizes our attention as few other natural...
The Beauty of Silence
An image has been coming to me repeatedly of late: falling snow seen through a window, an image I associate with my New England childhood when snow often fell in great enough quantities to keep us home from school for a day—or more. The...
Being a Woman
I learned recently that my niece will be giving birth to a girl in February. This is not surprising. Our family has been giving birth to women for going on four generations. My sisters and nieces and I adore each other’s company. We love to sing...
My Life in Words
I am in college, traversing the campus, wearing a pink wool sweater, an aberration for me as I have always eschewed the color pink as too girlie. But this sweater was a gift from my father, and so I’m giving it a chance, noticing how different it...
Adult Bibs, Evasive Mint: Creating Character Memes
My family of Boomers and Millennials is just concluding a week-long reunion. We have matured and ripened over the years so this recent gathering was rife with laughter and devoid of the tensions from gatherings in the past. The...
The End of the Beauty Trap: Opting for Eccentricity
Pages I hate to contemplate the number of hours I have devoted over the years to trying to beautify myself. Preening is a part of the lives of numerous animals, but the human species, especially females of the human species, have taken the...
Would We Write If We Were Immortal?
I have been thinking a lot about mortality these days, not morbidly, but with curiosity about what it means to live a life with the uncomfortable, sometimes scary, knowledge that it will certainly come to an end. A recent interview in The Sun...
When (How) Does a Novel Become a Novel?
I began a new novel recently and, while I’ve been contemplating the idea for a while, I’ve had trouble feeling the project is gaining traction. I am questioning whether the idea has sufficient coherence and gravitas, along with the legs for me to...
How To Be Friends
I have made the claim recently that talking is my favorite activity, but I am here now to clarify that claim. It isn’t that I love talking to just anyone—although I have been known to engage with random strangers—but that my deep love of talking...
Fine–Until We’re Not
I have always adored summer. The sun. The heat. The long lazy days. Visits to lakes and rivers and ocean beaches. Picnics and barbeques with friends. Fresh-from-the-garden vegetables. And vacations—who doesn’t love a vacation? Fantasies of summer...
Thoughts About Human Speech Since I’ve (Almost) Lost My Voice
There are few activities I enjoy as much as I enjoy talking. Sitting over dinner with friends and shooting the breeze. Discussing the state of the world, kids, movies, food. I’m open to any subject. A wide-ranging talkfest with friends makes the...
I Never Intended to Write a Sequel
I never intended to write a sequel. I’ve always thought of my novels as one-offs, stories that may be open-ended at their conclusion, but still convey the sense on the last page that things are done. Sequels are for mystery writers and writers of...
Entangled
It is the curse of the humanist to want all the laws of science to apply to people too. I confess to being cursed in that way. A few years ago, when I was researching my novel Weather Woman and was reading a lot of science, I became captivated by...
The Freeing Embrace of Imperfection
My voice these days emerges sounding like the slow deep rasp of an old woman; occasionally it resembles the high-pitched chirp of a child. It is no longer under my control. Receptionists and clerks raise their voices with me as if I’m deaf or...
To Sleep, Perchance to Write
My husband and I push a cart through Target. Bearing a list, he is purposeful: coffee, cat litter, Tums, toothpaste. I, along for the ride, am easily diverted. “I’ll catch up with you,” I...
Still Here
When I was diagnosed with an untreatable fatal disease two months ago (bulbar-onset ALS), I had the sensation of stepping off a treadmill. There were/are the expected existential thoughts brought on by the imminence of death, but alongside that I...
The Phoenix May Be Rising
Dear Friends and Readers, This weekend I had my second vaccination, and it has been accompanied by not only relief, but a huge sense of renewal and possibility and hope. Maybe things really can change for the better? I’m already imagining a...
Hutzpah, Humility, Resilience, Persistence, Patience: 5 Assets Every Writer Needs Alongside Talent
Not long ago I read a thread on Twitter in which dozens of young writers were bemoaning the fact that they had not yet been published. They had set goals for themselves and worried that they had not yet met these goals as they were approaching...
The Still-lowly Status of Women
March is Women’s History Month and March 8th is International Women’s Day. Hooray, let’s celebrate! How can you not want to celebrate women? I come from a family predominated by women: aunts, sisters, nieces. I love hanging out with women of all...
Embracing Uncertainty
Today (Feb. 23) is the 200th anniversary of the death of John Keats who was twenty-five when he died, an astoundingly young age for such a great poet and sage. The legacy of his that has affected me most profoundly is his idea of Negative...
Wintering
Now that we’re launched into the month of February, winter has descended on us fully with its own special ways of insisting we respect the power of weather. Often, winter weather is a terrible hassle: the snow shoveling, the frigid temperatures...
How About/What If: A Tip for the Blocked or Timid Writer
When my son was in late elementary/early middle school, he and two of his best friends favored a gamed I call “How About,” because that was always the way the game began. “How about I’m king of the river and you’re trying to get across and I try...
What is Cli-fi?
When I began working on my novel Weather Woman back in 2013, I had no idea I was writing Climate Fiction, now commonly referred to as Cli-fi. I’d never heard of Cli-fi before—most people hadn’t—I was simply exploring a What-if premise that...
Why I Turned Away From Realism and Began to Write Surreal Fiction
My turn away from realistic fiction.
Revisiting the Books of Childhood
In a recent flurry of bookshelf reorganizing, I came across the collection of books saved from my childhood. Alice in Wonderland, Wind in the Willows, A Wrinkle in Time, Half Magic, Stuart Little. Charlotte’s Web, The Secret Garden...
Playing with Punctuation
When my partner reads my fiction—he’s always my first reader—he invariably rolls his eyes. He doesn’t understand why I’m so stingy with commas. This has happened to us enough times that we merely laugh about it. I’ve been a punctuation rebel for...