Elusive Sleep

WORDS by JAN JOLLY
ART by NOAH SATERSTROM

May 17, 2022

A mother never wants to hear the words “cancer” and “daughter” uttered in the same sentence. And yet, in 2004, I sit with Sara, my 24-year-old daughter, in the hematology/oncology office. Soon we’ll learn to say hem/onc like we are old pros at blood cancer and its arcane lingo — triple-lumen port, bone marrow biopsy, lumbar puncture.

For months, Sara had complained of pain in her arms. Her physician ordered an MRI and the results came back with the word “leukemia” as one option in a list of possible diagnoses. “That’s ridiculous,” I scoffed. “You might have a hairline fracture in your arm or a deep bruise, but not leukemia. You’re just not that sick.”

But I was wrong. A bone marrow biopsy a few days later confirms her leukemia. And just like that, Sara began a two-year living hell of chemotherapy and bone marrow biopsies.

And just like that, I began a lifetime battle with insomnia.

Actually, that’s not quite true. I had suffered from occasional insomnia even before Sara’s diagnosis. Her cancer just solidified my already challenging relationship with a good night’s sleep. Sleep specialists called her illness a “precipitating factor” — an “initial trigger” — that marked the official start of my insomnia.

It has now been 17 years since the day of Sara’s diagnosis. I have battled insomnia for nearly two decades. After Sara’s treatment successfully ended, I expected blissful sleep to return. When it didn’t, I became frustrated, confused. I didn’t understand. Thought I was depressed. Perhaps I was, to some small degree. My doctor gave me pills. Trazodone. Ambien. Neither helped then, nor do they help now when I dig them from the bottom of the nightstand drawer in desperation for a decent night’s sleep.

I’ve tried white noise — fans, special bedside machines — and pink noise — CDs of gentle rainstorms and ocean waves. Lately, I’ve turned to gummies infused with CBD or other newly decriminalized alphabet soup cures.

I dread nightfall. Dread the long hours of futilely trying to sleep, listening to the icy rains of the Arkansas winter or the heavy stillness of humid July nights. Lying awake in the dark for hours on end, knowing I need to sleep, longing to sleep, but unable to feel that subtle heaviness in my eyelids or that calm slowing of my heartbeat that signals the descent into restorative rest.

Now, on most nights, I finish a Sunday crossword puzzle and try reading for a few minutes (no blue light screens for at least two hours) before turning out the light. I love to read fiction because it takes me away from the present and transports me to a different time and place. Novels seem to reset my brain, slow me down. My lids become heavy. My eyes burn a bit. It feels good to close them and feel the soothing moisture begin to ease their dryness. I turn out the light (specially designed to reduce blue light exposure) and snuggle into the pillow (copper-infused and constructed for side sleepers), laced with a light lavender scent (essential oil said to calm the nervous system), and begin to count my breaths.

Inhale: 1-2-3-4; exhale: 1-2-3-4-5. I count the breaths for 10 cycles. Repeat.

The washing machine made a weird noise yesterday. Inhale ... exhale. Repeat.

We need a new couch for the living room. What color? Inhale ... exhale. Repeat.

I haven’t seen those two box turtles in the yard this week. Inhale ... exhale. Re ...

Shit.

My eyes pop open, and I reach up to turn the light back on. Rearrange the pillows so I can sit up to read some more. Help Harry Bosch solve another L.A. murder. Cross the Pyrenees with the brave women of the French underground in The Nightingale.

All the so-called sleep experts recommend moderate daily exercise as one cure for insomnia. So I walk/jog (wog?) four or five times each week for an hour or so, and I purchased a treadmill for the rainy days. Weather permitting, I trek up and down my Little Rock neighborhood hills, around the back of the high school. Past the mysterious house with windows covered in black plastic (creepy). Past the manicured lawn next door to the overgrown weed lot (Should I offer to mow?). I’ve gotten to know my neighbors and fellow walkers (woggers?) over the years, which is a nice benefit of a walking routine: the guy with the new solar panels on his roof who loves to tell me how much his electricity bills have dropped (I don’t really care, but I listen politely); the blind lady who walks with her gray poodle, Leo (they look adorably alike, and I wonder if she knows).

And yet, after a day of exercise, eating right, a hot bedtime shower for relaxation, and following what the doctors call “good sleep hygiene,” sleep still eludes me.

On nights when I can’t sleep, I never think about how I’m going to pay my bills (I have a decent income), or my kids (they have successful marriages and careers). It’s mundane things like needing to buy paper towels or trying to remember all the words to “Across the Universe” that keep my brain chugging like a runaway train.

And with the full-blown irony of meta-insomnia, I lie awake worrying about lying awake. I can’t sleep because I’m thinking about not sleeping.

Another April rolled around in 2009, five years after Sara’s leukemia diagnosis. Jim noticed a lump in his throat while shaving. A biopsy showed squamous cell carcinoma on his tonsils.

And just like that, another port to keep clean. A feeding tube; radiation; chemo. And just like that, I morphed back into a well-trained caregiver.

Inhale: 1-2-3-4; exhale: 1-2-3-4-5. I count the breaths for 10 cycles. Repeat.

I’ve got to clean Jim’s feeding tube tomorrow. Inhale ... exhale. Repeat.

Is he throwing up again? Should I get up and help him? Inhale ... exhale. Repeat.

Please, God, please don’t let me lose him. Please. Inhale ... exhale. Repeat.

The weeks inched by. The endless nights inched by. And, while Jim got well, my insomnia worsened. By the time he finished treatment and our routine returned to normal, I remained awake more nights than I slept.

• • •

The internet teems with articles on insomnia. Try meditation! Check. No TV, smartphone, or computer screens for two hours before bedtime! Check. Try aromatherapy! Check. Listen to white noise! Check. Exercise daily! Check.

The body’s failure to produce the hormone melatonin tops many lists of insomnia causes. Its production in the brain connects us to the daylight/dark circadian cycle, and our levels decline as we age. I tried melatonin supplements — to no avail. One milligram. Two milligrams. Ten milligrams.

Night after night, week after week. Check.

Chase the melatonin with chamomile tea or valerian root oil in a warm glass of milk. Check.

I’ve tried advice from expensive sleep specialists, advice from the Mayo Clinic, advice on WebMD, Sleep Foundation articles, research papers from “Psychiatric Times,” shady advice on Bubba From Benton’s Blogspot.

If it’s out there, I’ve tried it.

• • •

It’s around 3 p.m. on a hot July day in 2014. I am in the den, reading a book and enjoying a lazy Saturday, when I get a call from my nephew, my beautiful sister’s oldest son.

“Hey, Jan. It’s Walt. I’ve got some bad news. Ah ... no easy way to say it. Mom just had a stroke.”

I laugh, thinking he’s kidding around. “Oh Walt, what did you do to her this time?” But Walt isn’t joking.

“I’m serious. She just collapsed while we were waiting for a table at Chili’s after the game. They’re getting her ready for surgery.”

No. No. No. What? What did he say? The room spins. My book drops to the floor. I stand up, sit back down, stand back up.

“My God, Walt. I’m not ... what? Lynette what? Had a stroke? Who’s with you? Do I need to come?” I know I’m babbling and starting to panic. Jim stares from across the room.

“I’ve gotta go. They’re taking her back now. I’ll call you when we know more.” He hangs up.

And just like that, I hold a silent phone. My heart thunders in my chest. Tears overflow. Lips quiver. Shoulders heave with uncontrolled sobs, and I cannot imagine a world without Lynette in it.

And just like that, I have yet another legitimate reason to worry in the darkness of midnight as I stare at the ceiling, unable to sleep.

At one point, I went for a sleep study and emerged with a state-of-the-art CPAP machine.

The first one they gave me used a nasal cannula — nose plugs with holes that forced air into my nostrils all night long. Every time I switched position, the cannula moved, and I had to reposition it so that the moistened air didn’t blow on my face. The second machine had a nasal hood that fit over my nose like Bozo the Clown’s bright red nose. The air blew in through long tubes like corrugated garden hoses wrapped around the back of my head. Again, every time I moved (and I move a lot), I had to reposition the hoses and nosepiece to keep me from feeling like I was sleeping in a wind tunnel.

The worst CPAP contraption involved a mask that completely covered my nose and mouth. A full-face mask (Hello, general anesthesia!). Yeah, right. That lasted a week before I went back to the nasal hood, the lesser of the three evils.

I am a good patient. I listen to the doctors and follow instructions to the letter. I’ve often said that if a doctor told me I could avoid getting cancer by not talking, I would never speak a word again. No problem. But this CPAP nonsense made me sleep less than I had before submitting to its agonizing tubes and air hoses. After three years (yes, you read that right: three years!), I finally gave it up. The sleep doctor was not happy with me. The same doctors had hooked my father up to a CPAP when he was in his 80s. He put up with his for only three weeks before returning it for his money back.

• • •

My father was a quiet man. Strong. Ex-Marine. He rarely articulated the lessons he taught me. Instead, he handed me a pencil to help him work the daily crossword. He let Aesop teach me morals. He let Dr. Seuss show me how to be silly and kind and curious. For Daddy, a book about a long adventure by hobbits and elves was just that — not a discourse on good versus evil.

Although I suspected that he occasionally pondered the deeper meaning in the books and poetry he read, in the end, he was a pragmatist, a literalist, and read for the escape and fun it provided rather than for intellectual challenge. As he aged and dementia began to blur his world, he gave up on reading. I became his reader. “The words are all mixed up,” he’d say. He kept trying to finish the daily crosswords, but I’d find even the easiest Monday puzzles still half-finished on Wednesday. He seemed to know our time together was ending and that he had done all he could to help me become a moral, kind, silly, and curious person.

Of all my father’s talents, his snoring was legendary. Within just a few minutes of turning out his bedroom light, the rumbling began. First, just a gentle, rhythmic growl, like a satisfied cat purring after a good meal. The growling slowly built to a grand crescendo, shaking the windows, and (I always suspected) frightening the neighbors. I never understood how my mother managed any sleep. Perhaps she suffered silently. Perhaps she tiptoed into the guest room to read while he roared, deep in dreamland. Perhaps the seeds of my own insomnia began to germinate during my teenage nights listening to Daddy snore.

No serious worries keep me awake anymore. Sara beat her cancer (17 years in remission equals “cured”). My sister — six years my senior — passed away last year. My husband golfs nearly every day, fully recovered. Worrying about loved ones furnishes a legitimate reason for insomnia. But once their issues resolve, don’t I deserve a decent night’s sleep?

At the peak of my insomnia, I woke up four or five times a night. Go to the bathroom. Back to bed. Get up to read. Back to bed. Go get a snack. Back to bed. Read some more. Back to bed. Go pee again. Back to ...

You get the picture.

I read somewhere that Abraham Lincoln took long walks in the middle of the night because of his insomnia. I hardly have the weight of Lincoln’s responsibilities on my mind, nor are the streets of midtown Little Rock quite as safe as an Illinois country lane or the grounds of the White House for midnight strolls. Ben Franklin recommended, for those who could afford it, using two beds, a strategy I occasionally use. Former British Prime Minister Margaret Thatcher supposedly rationalized, “Sleep is for wimps.”

It doesn’t help to be in good company.

Jim never wakes up once we turn the light off. Never stirs. Rarely snores. He does have magnificent dreams he likes to tell me about several mornings a week over coffee (never more than two cups, and both before noon). I worry about waking him up with my tossing and turning. We’ve settled on a solution that seems to work: When I can’t sleep, I take my pillow and my book and retire to the guest bedroom — à la Ben Franklin — where I’m free to read, wander around the house, raid the fridge, listen to pink noise, whatever. And since no one expects me at a job by 8 a.m., I’m free to snooze until midmorning on those occasions when I finally drift off around dawn.

I’ve learned to live with my insomnia. I no longer fight it. Insomnia defines a part of who I am. I get a lot of reading done between midnight and 4 a.m. I know what time my neighbor gets home from the bars. I know how many times each night the central heat kicks on. And I know that, no matter how little sleep I get on a given night, there will be that one rare night where I drift off as soon as I turn out the light and do not wake up for nine or 10 long hours. On those delicious mornings, I count my blessings. I bring in a hydrangea from the garden for the kitchen table. I kiss my husband, and enjoy our morning ritual, facing the new day, rested and alert.

Tonight, I finish my Sunday crossword puzzle (seven-letter word for "stuck” — cohered), and I lose myself for a few minutes in World War II as The Nightingale hides from the Nazis. I say a prayer of thanks for the years I had with my father and my sister, for Jim and Sara’s good health. I turn out the light and snuggle under the comforter, a small fan gently whirring, darkness enveloping me. My eyes close, and as I anticipate the comforting embrace of sleep creeping in, I remember that tomorrow I need to buy lettuce sets from Cantrell Gardens. Then I hear the dreaded lyrics: Thoughts meander like a restless wind inside a letterbox / They tumble blindly as they make their way across the universe / Jai Guru Deva, Om/ Nothing's gonna change my world.

Dammit.

I click the lamp back on. Maybe tomorrow night will be better.