Dreaming a New Mountain Dream

Tom and I both woke up this morning with the conviction that we’ll be returning to our beloved western North Carolina mountains. That’s why I changed the name of this blog from Kicked By a Mule to Writing to the Sunrise.  While we did indeed feel “kicked by a mule”  after getting a mantle cell lymphoma diagnosis and going through all the changes the past two months have wrought, optimism is deeply rooted in both our natures. Plus, with an indolent and localized strain of MCL, caught early, and one of the best medical teams in the world at Mayo Clinic Florida, there’s ample justification for optimism. So we’ve begun to dream again. And if history is any guide, when the Harpers start to dream, the earth moves. I should probably start stockpiling packing boxes!

Our home near Asheville, NC from 1997-2004.
Our home, (designed by Tom), near Asheville, NC from 1997-2004.

We spent all day yesterday surfing real estate for sale in Maggie Valley, Waynesville, Hendersonville, Arden, and Fletcher. All we have to do now is finish two more cycles of R-Benda and roughly a month of external radiation. If the docs are right, and Tom continues to do well, we could be back on the ridge tops by late spring of 2015.

We were only weeks away from putting “the mansion” — our fond name for our home here near Pensacola, Florida — on the market when Tom was diagnosed, so the house is polished and ready for listing whenever we are in a position to pull the trigger. Right now, however, the “biosphere” — one of the nicknames given to the mansion by the grand-kids — is a place of clean, quiet serenity in the middle of a hundred acres of pine woods, where whitetail deer and wild turkeys are regular visitors. Can you imagine a more wonderful place to heal and dream a new dream?

Dose of Inspiration

When you or the person you love most in the world pulls a bad diagnosis out of life’s jar of gumballs, it’s all too easy to become overwhelmed by the silty, swirling slew of internet assertions, listservs, support groups, tiny print scientific papers and raw emotion engendered by the hard kernel of fear that pulls you down, down, down into the brackish dark water.

I was so there last week. Tom and I had recently returned from yet another trip to Jacksonville for his second chemo cycle. The nausea and fatigue were hanging on longer than they did after the first treatment. For the first time in our thirty-plus year marriage, I began to feel the small pond of our fourteen-year age difference widening into a gulf. It was a terrible feeling.

The  afternoon’s prototypical panhandle Florida late July flash thunderstorms and thick air matched the brewing storm I could feel behind my eyes as I drove to the post office and the grocery store. My throat felt lumpy like I was about to cry or scream. Hoping for distraction, I turned on the car radio. Rather than mere distraction, I found inspiration from the gifted host of the co-produced NPR TED Radio Hour, Guy Raz.  The topic for his show that day was an exploration “of the minds and bodies of champions who achieve extraordinary feats.”

In the segment I listened to, he interviewed swimming champion Diana Nyad, who at age 64 became the first person to swim from Cuba to Florida without a protective cage.  She attempted the swim four times unsuccessfully over a period of 35 years. It almost cost Nyad her life. But in September of 2013,the year in which her self-described mantra was “find a way,” Diana Nyad succeeded. Her spirit and physical prowess are phenomenal.

The TED Radio Hour interview changed my personal channel altogether and I had an epiphany that I needed to stock my emotional quiver with inspirational arrows. And that I needed to get back on track with my creative projects, to write my way through this storm.  I’m grateful to my trusty old car radio, and to Guy Raz and Diana Nyad for guiding me with the touchstones of their words all the way from the bottom of the river back up into the fresh air and light. Because of them and the serendipity of the moment, I figured out how I could write about Tom and my experience with MCL. Because of them, I’m writing again and there’s hardly a better feeling in the world.

So now, to keep that inspirational thang going, I’ve started looking at more TED talks, listening to magnificent music, writing  and playing my big old rafter-rattling piano again.

Here’s Diana Nyad’s TED Talk:  “Never, Ever Give Up.” Enjoy.

 

Respite

We sent a postcard to ourselves today, a reminder of secret afternoons spent in cool, dark caves. Curved into a comma, I lie on top of our blue Oxford pinstripe sheets, heart beating in rhythm to Tom’s beside me. The feather pillow dressed in softest butter yellow rises and falls over his chest, where he has enfolded it for warmth. One degree too cool and the air-conditioner is nothing if not efficient. I touch a freckle on Tom’s arm and covet the thick fringe of dark eyelashes that tremble with each inhalation and exhalation. I watch his lean left cheek, the one I can see, as it blows out with each breath. Not a snore, but a musical rumble, a ripple of life.

Solo, Solo

 

“Solo. Solo,” the women called in subdued, but urgent tones.

“Well, okay,” the old man said, rounding a time-softened gray fedora in his thin, elegant fingers. “I don’t know how it got to be five years from now.”  He sat on a low ottoman in the parlor room of the small community library, surrounded by four calm-faced women of indeterminate ages. A single ray of sunlight cut through the morning shadows and fell onto his scarred arm.

It was a dream. I stumbled out of bed shortly after six to my study, found a mechanical pencil stuck in an antique heavy glass “flower frog” and began to scrawl on a legal pad. Didn’t even turn on a lamp. You know how it is with dreams. Even the most vivid ones. If you can write down a scrap of it, or in a pinch say it out loud, you stand a chance of capturing an exotic bug in a bottle.

Tom came in, found me in the darkened study, standing up, scribbling furiously.  I wondered what he was doing there. This is not a man who has ever voluntarily gotten out of bed before the chickens. He moved on toward the kitchen and returned balancing half a slice of bread on a short glass of skim milk. He eyed me curiously. I mumbled something, held up my left hand in an inarticulate “wait” signal, but continued to write.

“I’m going back to bed,” he said, and was gone. Nausea, I thought. It’s still hanging on from last week’s chemo, and he’s trying to smooth it down with milk and bread and put together enough sleep from the fragmented night. Between my restless dreams and his discomfort, a solid six or seven hours of sleep is rare as precious myrrh.

 

Freight Train

Tired and nervous as a cat, I am sitting in Room 138 of the Courtyard Marriott adjacent to the Mayo Clinic in Jacksonville. Tom is in the shower, preparing for a routine EKG at 11:50, then an appointment with head and neck surgeon and otolaryngologist, Dr. John D.  Casler at 1:15, then a 3 p.m. with a nurse practitioner to go over labs and clear him for general anesthesia tomorrow morning for Dr. Casler to remove the enlarged lymph nodes from the left side of Tom’s neck.

11:45 now, and we’re in the Davis Building. Tom has gone in for the EKG, which we are well-accustomed to, since we both get one every year as part of our physicals.

It’s been so many months since I kept a regular journal  the very act of putting ink onto paper feels strange, revolutionary.

I’m so anxious about Tom’s health I can barely focus my eyes. He would say I am hollering before we’ve been hit and of course he is right about that. Nonetheless, I feel half-paralyzed, jerky, spastic. Much too distracted to read a book.

I see that I am in no-way prepared for our “real” aging, possible illnesses and eventual death. Not his. Not my own. And it’s coming one-eyed and fast, like a freight train out of a tunnel.

I Tell Myself Stories

The online class I’m taking through Creative Nonfiction calls on participants to write a minimum 300 word piece each day (Monday – Friday) and a 1,000-word piece that can be separate and new or culled and compiled from the week’s work.  It’s a 10-week course: 2 down, 8 to go. Worth it, in case you’re interested.  Excellent instructor and the finest group of writer-classmates I’ve run into yet in an online course.  Lots of feedback and discussion. It’s called “Bootcamp for Writers.” Here’s a piece I submitted today. The prompt was: “Why I Write.”

“We tell ourselves stories in order to live. ”

~ Joan Didion, The White Album

I know everything about my own narrative until I know nothing. I can answer all the questions anyone might ask until I can’t answer any of them.

Before seven this morning, I could tell you with certainty, verve and passion, why I write. By ten, I don’t have a clue.  By Noon, I’m pretty sure I don’t want to know.

It was the photographs that did it. And the old letters. The newspaper stories didn’t help, either. By one o’clock I was a teary mess, and it took two hours of walking alone in the woods with the sun on my back and a northeast wind in my face to regain some semblance of equilibrium and perspective.

I was mostly looking at pictures of dead people. Oh, they were alive and seemingly immortal when the camera caught the moment. The baby, James Clyde Pelfrey, wore a lacy white christening dress and shoes that looked like brown combat boots. He was born in 1908 and died in a house fire on Pensacola Beach in 1974. His wife, Anne, my husband’s aunt, survived. Their new candy apple red Cadillac melted in the garage. The only intact papers that weren’t burned up were a Western Union Telegram notifying Anne and Clyde of Buck’s birth on December 11, 1937 and a stunning love letter sent from Clyde to Anne while he was serving overseas during World War II.

The last photos of me with my mother, from 1989, catch me off-guard. I look like I am posing with my arm around a total stranger, smiling an insincere smile as though everything is fine and dandy. Mother, who hated to be touched even before Alzheimer’s, draws away, her pinched face showing she wants to get away from this pushy person.

Almost done. And almost undone. The last photo is an arty black and white of my three step-children when they were toddlers.  Two boys and a girl. I didn’t meet them until they were 18, 21 and 22, more than 32 years ago. The middle child’s white blond hair, bright eyes, and smile full of a little boy’s mischief, takes my breath. Who could ever have put a finger on this angel and said: Darryl will die of a heart attack in 2005 at the age of 45 and his death will nearly kill his dad?

Some of the photos don’t cut me. They are several generations removed. My husband’s people. Ones I never met. I interleave their stiff dressed-up black and white photos with acid-free tissue paper, put the lid on the box and stagger down the stairs, feeling like I’ve been run over by a truck.

Maybe I write out of fear, out of a belief that a fit brain that can juggle, retrieve and play with words cannot succumb to a nightmare organic brain disease that destroys memory and personality. Maybe I write so I can go back to last week or last year or ten years ago and recognize the writer as myself — the same “me” I see in the mirror every day. Maybe I write to add my voice to the infinite line of pilgrims scrawling on the cave wall “We were here.”

Maybe I tell myself stories in order to live.

Ten Forty-Five on a Piney Woods New Year’s Eve

THE GOOD OLD BOYS deep in these panhandle Florida pine woods couldn’t wait until 11:59 to kick up a fuss.  It’s only 9:15 when I hear the first muffled whumps and booms of roman candles, aerial repeaters and shells, and firecrackers.  When I step outside I feel a frisson of electricity in the air and hear the crackle of sparklers. The cloudy night sky erupts into a poor-man’s kaleidoscope.

Buck is writing at his desk in a bright circle. I’m already in bed, leaning against a stack of pillows, listening to a Spotify playlist for a random search of the word “Talisman,” and typing on the extension of my fingers also known as a Surface Pro 2, my all-time favorite gadget tool.

Ah, here he comes now with our treat for the evening, a bag of Dove dark chocolates.

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Earlier this evening we lightly steamed a pound of blue crab claws (the little, cocktail size) and nearly two pounds of sweet and tender Pensacola Bay shrimp. Buck stirred up his special dipping sauce, a mix of horseradish, Worcestershire sauce, Tabasco, ketchup and a smidgen of mayonnaise. I doused a small plate of sliced Feta cheese, Kalamata olives, and house-roasted meaty red peppers with olive oil, ground pepper and oregano. We took our feast to the room we call the Snow Porch (the naming of that room is a story for another time), along with a bowl of Naked Pita chips and our drinks, and fell to.

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Tonight is merely an arbitrary convention to delineate one measure of time from the next, but I welcome it as a conscious pause button, a mindful thumb on the scale.

I washed our bed linens today, the Oxford stripe blue sheets and the warm gold duvet cover.  The serene blue and burnished gold please me.

I’ve moved past the Talisman music and have gone to a favorite created playlist for my characters, Grace and Jess. They still have a lot of mountains to climb, a lot of growing to do.

Eons ago when I worked as Director of Communications for the Pensacola Chamber of Commerce, we began each year with what we called a “Program of Work.” I have a loose program of work of my own to start the year off with a bang that includes a challenging ten-week online course hosted by Creative Nonfiction, called Boot Camp for Writers.  It begins next week. Mid-month brings a six-week online course, Advanced Fiction. I’m fired up and ready to go.

So am I blogging again?  The title is The Do-It-Yourself Writer, subhead Elizabeth Westmark’s Scribble Space.  Maybe the sub-subhead should be Making It Up As I Go Along.

Hope you chase down or get covered up by clouds of bliss this year.