When the Sun Rises Without You

by Barbara Joyce-Hawryluk

Her chest rises and falls, hitching a little as her eyes track the second hand of the clock until it reaches twelve. In twenty-nine minutes, she’ll be dead.

A question aches inside Julie Silke, a grim tear bleeding down a sallow cheek. How do you close your eyes for the last time? Let the lids fall, little by little, as the person in front of you, the one you loved from the second you felt her kick inside your womb, slowly vanishes from sight. Forever.

She doesn’t want to leave her only child. She doesn’t want to die.

*

Julie, her mind still in reasonable working order, had cut through the squabble of hope and despair and made a choice. You may not control all the events that happen to you, but you can decide not to be reduced by them. It was her favourite Maya Angelou quotation, and it had supplied fuel during a two-year stand-off with her neurologist, Dr. Sand, and with her daughter, Rae, over Medical Assistance in Dying. She wanted MAiD. They didn’t.

Rae was an idealist, offering an optimistic flurry of Dr. Google advice, but it was Julie, not Rae, being buried alive inside a coffin of skin and bone from Relapsing-Remitting Multiple Sclerosis. RRMS had been stealth in its attack ten years earlier¾lazy foot nicking the edge of a scatter rug, cups and plates slipping from her hands. The insidious assault had escalated to roaring debilitation¾total dependency, visual perversions, and over the last two years, a tenacious fog infiltrating her brain, leaving her forgetful and at times confused. Scrambled thinking triggered panic, which led to the first, second, and then final MAiD application, the first two rejected because of the neurologist’s report.

“Who owns my life anyway?!” The desperate cry stuttered between gulps of saliva and air, foam bubbling from her lips as she sat, wheelchair-bound, in Dr. Sand’s office for the third time, Rae dabbing sticky white paste from the corner of Julie’s mouth.

A question with no clear or simple answer. Not when the law permitting death with medical assistance was new and rules and requirements were still being sorted. Not when the diagnosis and prognosis didn’t tuck neatly into the criteria. Not when human beings were being human.

Dr. Sand, a study in practiced authority and clinical efficiency, didn’t see it the way Julie did. From the inside. He wasn’t hostage to the inevitable devolution, piece by piece, of body and mind—communication lost, thinking disordered, ventilator wheezing into withering lungs, tubes force-feeding wasting cells, bags and machines encrusted like barnacles on a sinking ship. All to keep the horror show running, for how long, no one could predict for certain, not even a seasoned neurologist.

“You know the criteria for acceptance,” he said, ticking the points off with his fingers. “A medical condition that’s considered grievous and irremediable, incurable and in an advanced state of decline. Intolerable physical or psychological suffering that can’t be relieved under conditions considered by you as acceptable. And,” he added, widening his eyes over the top of his glasses, “natural death is presumed to be reasonably foreseeable in the next two years, or thereabouts.”

He’d paused and she knew why. He was waiting for the words, third time delivered, to take hold, as if repetition would shake her resolve.

Her unyielding stare returned his.

“Ms. Silke,” he’d sighed. “You’re only fifty-eight years old. I can’t, in good conscience, answer the MAiD doctor’s question the way you want me to.” He read the question aloud as if she hadn’t heard it before. “Would you be surprised if Julie Silke dies of natural causes in the next two years?” He removed his glasses. “My answer is still yes, because it’s the truth. With your particular diagnosis, you could be alive two years from now, maybe even much longer.”

Once again, Julie knew that Dr. Sand’s prognosis would be the single factor denying her the right to assisted dying.

A contorted claw of knotted fingers trembled helplessly in her lap as panic raged inside.  I’ll be incompetent soon!  MAiD won’t even consider me then! You know this! Her lips quivered in fury and then flattened. She had neither the strength nor endurance for the same tired argument.

Silence filled the space between mother and daughter as Rae drove back from Dr. Sand’s office to Julie’s assisted living suite, until Rae pulled into a side street, collapsed against the steering wheel, and began to sob. “Can’t you delay? Just for a while. Please!” Rae wiped her tears with the back of her hand. “I’m pregnant, Mom. Your first grandchild.”

Julie’s heart soared and collapsed in the same moment. Can I wait a little longer?

*

The summer passed, MAiD application put on hold as her medical condition declined, forcing three emergency admissions to hospital for pneumonia, lungs wheezing ragged bursts of breath while drowning in mucus and despair. Answering her question.

Boxes on the MAiD application were once again ticked and answer blocks completed. How long had Julie considered MAiD? What were the details of her physical and psychological suffering? Why MAiD versus palliative care or natural death? Why now? If MAiD wasn’t an option, what then? Was there anything that would change her mind? Was she aware of other options—withholding or withdrawing life sustaining treatments, or palliative care? Was she of sound mind? Depressed? Were there any contraindications in the file forwarded from her family doctor? Were the important people in her life aware of her decision and did they support it?

As expected, the final part of the assessment, the one requiring input from the neurologist, remained unchanged. In Dr. Sand’s professional opinion, natural death may not occur in the foreseeable future.

“Begging you,” Julie wept. “Can’t do this … Please … Another neurologist?” The words came in desperate punches after the MAID physician, Dr. Walker, delivered the news.

“Getting a second opinion will take a lot of time and there are no guarantees. Before I make a referral, I want to explore one other option,” the MAID doctor said.

Dr. Walker scoured all three-volumes of Julie’s medical files and reviewed the medical literature. What she discovered was a point of possible dispute. Julie’s EDS score, a measure of disability and progression, had jumped from level 7 to 9 since her last application a year earlier. She was one point from level 10, death from MS. With three pneumonias in less than two months, the recalculated trajectory of decline deserved consideration, not just the nature of RRMS, because it meant that Julie might well experience natural death within two years.

“Living is tough … dying harder,” Julie managed to spit out after hearing that the third application was reviewed and accepted.

“It’s not quite over yet,” Dr. Walker cautioned. The lawyers agree that you meet the criteria but a second MAID team is required to make an independent assessment.

Fire flashed in Julie’s eyes.

“I’m sorry, I can only imagine how exhausting and frustrating this is for you. We’re not trying to make this any more difficult than it already is, but we have a protocol to follow, especially since your situation isn’t as clear as others. Another set of eyes will ensure the right decision is made.”

Findings from the second team concurred. Natural death was imminent, probably measured in months, not years.

Julie finally had agency over her dying body. No more pneumococcal waterboarding, pharmaceutical straightjacketing, bedsores, infections, and freefalling into the hands of caregivers, some who coupled care with giving, some who didn’t.

*

Her eyes shift in the direction of a curio cabinet¾ a gift from her long-deceased husband¾where the clock sits, along with a swath of medical aids and supplies. Fifteen more minutes. The nurse inserts the first and then backup IV cannula.

“How you do this?” she whisper-stutters.

“Like I said before, the first medicine is a sedative. It’ll make you sleepy and relaxed. Before I administer it, I’ll ask you again if you’re sure.”

A switchblade look cuts across to the doctor.

“I know. If you hear¾ ‘Are you sure?’¾ one more time, you’ll … well … I can’t imagine what you’d do to me if you could.” Smiles circle the group, the widest one breaking through Julie’s shrunken features, brightening her cheeks with a flush of colour.

“The second medication will put you into a coma, a deep sleep. You won’t feel a thing by the time the drug from the last syringe goes in. It’s a neuromuscular blocker and it stops your lungs from breathing and your heart from pumping blood. There’s no gasping or shaking. It’s a peaceful transition.”

“Not what I mean.” Julie works hard between bursts of hacking and gagging to make her tongue fold around the words and push them out. “Your job.” 

“Ah, I see what you’re asking.” Dr. Walker crimps her lips and gathers her thoughts. “Not easily and not lightly. I think about how I want to be treated when it’s my time. What would I want if I had a condition like ALS, terminal cancer, or MS?” Her thoughtful eyes rest on Julie. “The answer’s always the same. I’d want to be heard and respected.”

A gentle purr vibrates in Julie’s throat. Appreciation.

“And so,” the doctor continues, “I do my best to listen and try to be respectful, reminding myself always that this is about you, Julie, not me. Really, it doesn’t feel like a job, not for any of us. I know it sounds cliché, but it feels more like a calling. Hard, very hard. But right, very right. If that makes sense.”

Another purr.

The social worker pulls a book from her bag. “We helped your mom make this for you, Rae. It’s a Legacy Book and it comes as part of the MAID program.”

Rae dabs her eyes with a soggy tissue and opens the memoir, fifty pages abbreviating fifty-eight years of living¾the exquisite and the ordinary, highlights and lowlights. She reads the first page; a poem Julie wrote during the dark days following her diagnosis:

Life moves the years through you

Crafting a story

Until one morning

The sun rises without you

And in the seconds before it breaks dawn

You look at who you were

And who you are

And wonder if your story

Made any difference at all

At the bottom of the page, there’s a note in unfamiliar cursive.

“Your mom asked me to write that for her,” the social worker explains.

You, my precious girl, have been my story, my purpose. I hope I’ve made even half the difference in your life as you’ve made in mine. My story might be ending here but yours is being crafted with the gift of new life. Please tell my grandchild that I knew. I had the joy of knowing that he or she was coming as I was leaving.

Julie’s nystagmus stalls and permits her eyes to stop shifting and circling for a brief moment, to rest inside her daughter’s tearful gaze. Mother and daughter living and dying together in a lullaby for suffering with a paradox to blame, as Leonard Cohen once said.

Briny tears pool in the nape of Julie’s neck as Rae whispers in her ear. “Good-bye, Mom. I love you forever.”

“Love … you … too,” Julie gasps, weary but peaceful regard drifting to Dr. Walker with an answer to the question she knows the doctor is obliged to ask: “Are you sure?”

Her head jerks a nod and Dr. Walker releases the first plunger.

“Thank you,” she whispers, as eyelids, little by little, drift to a gentle close.

Barbara Joyce-Hawryluk shifted gears from academic writing as a social worker to crime fiction in 2013. Wounded, her first book in the Scarlet Force series, won bronze in The Independent Publisher Book Awards for Best Western Canadian Fiction, and finalist in the High Plains Book Awards for Best First Novel and Best Woman Writer. The second book, Bad Elf, will be released in 2020. Inspired by real events and people, the series features Royal Canadian Mounted Police Constable Debrah Thomas and her husband, Major Crimes Investigator Liam Thomas. Barbara is a member of Crime Writers of Canada and Sisters in Crime. When she’s not writing, she’s reading, running, and enjoying her grandkids. Her website is https://scarletforce.com/

Patriarch

by Susan Moldaw

          My father was proud to be the patriarch of our family of four—my mother, my sister, and myself. When he was eighty and his cancer was diagnosed, it was a surprise, though I knew he would beat it.

          I sometimes drove him to the cancer center for treatments. He always walked in, unlike other patients, who came by wheelchair.

          One day, nine months after his diagnosis, my father finally requested a wheelchair when we got to the hospital. That morning, he asked his radiation oncologist how much longer he would live. “Five years?” he asked. Reluctantly, the oncologist said that his cancer was fatal, and would probably kill him within the year. My father’s face fell. I felt my heart drop, seeing his disappointment. Besides—my father was invincible. He couldn’t die. The oncologist didn’t say what the primary cancer doctor gently told me, later, in the brightly lit hallway outside the examining room—that my father had only a few months. Her compassion let loose my fear and sadness. My eyes widened; tears pooled. She gave me a heartfelt hug.

         

The author and her father

My father and I slowly drove home. Neither of us spoke. He winced with every bump in the road. After I helped him out of the car and we walked what felt like an interminable distance to the front door, he put his arm around my shoulder. I felt his arm’s weight and the welcome burden of his need as I helped him navigate the threshold, cross the hall, and get into bed. That was the first time, and the last, that he ever leaned on me. When I was young—and older too—I’d leaned on him, and wept—at times—into his kind, capacious chest.

Susan Moldaw works as a chaplain in San Francisco. Her writing has appeared in Brain, Child Magazine, Lilith, Literary Mama, Narrative, and other publications.

Pneumagraphia

by Dreama Pritt

“Simone Weil was right; there are only two things that pierce the human heart: beauty and affliction. Moments we wish would last forever and moments we wish had never begun.”

                                                        ~John Eldredge, Desire

              

The marks on my son’s skin were ugly. At least a dozen red, raised welts, long and thin, covered the right side of his neck. I rushed over to him. 

“Oh, my goodness! What happened?” I’m sure my voice was shaking.

He looked up at me after pausing his video game, puzzled, with no sign of discomfort or pain in his bright blue eyes. “What are you talking about?”

“This, on your neck,” I said, gently touching one of the welts. “How did you get these marks?”

Still looking confused, he lifted his hand to his injury. “I dunno, Mom. I had a little itch and I scratched it,” he said. “Why are you freaking out?”

I couldn’t believe the angry lines were from the normal scratching of a normal itch, but within ten minutes, all the marks were gone. My son insisted that he hadn’t been in any pain. Later, he was diagnosed with a fairly innocuous autoimmune disease called dermatographia.

“It literally means ‘to write on the skin,’” his pediatrician said. She confirmed the diagnosis by tracing on his arm with a tongue depressor, recreating one of the inflamed lines we’d seen before. 

The Mayo Clinic’s web site says that dermatographia “leaves no lasting marks.” My son, always the performer, is not above masking the dysfunction by using the effect on his skin as a party trick, turning his problem into a talent. Since learning of this disorder, I’ve seen images of people who use its effects for art. After drawing designs on their skin, they photograph the results, preserving the short-lived pictures raised on their reusable canvases.

I wonder, though, about the things in our lives that do leave lasting marks.  Certainly, some physical injuries leave lasting scars, but I’m thinking about a deeper impact, marks that cannot be seen. Not skin-deep, but soul-deep.  Not derma-deep, but pneuma-deep.

The experiences that stay with us the longest are those that prick the heart, whether sharpened by beauty or affliction. What sticks in the memory? What details won’t leave? What bits do we grasp tightly, desperate to not lose? The answers to these questions define us. Shape us. Our perspectives shift, as new experiences come, as new lines and couplets are etched into our often pierced hearts. Light and dark entwined write on the soul.

Yes. 

To write on the soul. That’s it exactly.

Pneumagraphia.

~

Sunlight bounces off blonde curls. The front porch is hers alone for the moment; her mother is just inside the open door. The toddler is content, curiously looking down as her bare toes explore the cool, rough surface of the concrete. An unexpected wind catches the storm door, and it swings wildly toward the blissfully unaware baby girl. As the door reaches the apex of its swing, the glass pane, adjustable to let in or keep out the fresh air, loses its hold on the door. Her mother gasps and speeds toward her daughter, even then knowing there’s no way she can make it in time. The storm door swings back into place, but the glass falls directly over the little girl’s head. It crashes. Splintering. Shattering. The girl’s mother, fear and adrenaline at full blast, rushes to her daughter’s side. Instead of cuts and blood, tears and pain, the little girl looks up unscathed. The broken glass has fallen around her in a perfect circle.

~

My mother always tells me that I have “blonde skin.” It is still fair, though my blonde curls deepened to chestnut before I left elementary school. A myriad of scars, both faint and dark, chase stories—wrecking a bike shoved a tooth through my lip there, taking a kitchen knife from my four-year old niece opened my pinkie here, surgeries, falls, and no idea where I got those—around my body. I love them, really. Like shadows in a painting, memories—even of pain—grant an air of character to my past.

I was protected, that day on the porch. Supernaturally, I think. But I can’t really explain why. And I don’t remember it for myself; I was too young to hold onto any memories, good or bad. When I see it in my mind, it is from my mother’s perspective, a soundless video, insulated from noise and fear and speed. I don’t remember the first time I heard the story; I don’t remember how many times I’ve heard the story; but I do know that it is a beginning in my story. A marker of who I will be. A marker of who I will become. Shards of glass not touching my body, but engraving my soul.

I wonder at the scars I have, and I wonder at the scars I don’t. 

~

My first memory comes to me, sieve-sifted through years of shame, of shadow, of light, of love. That day, too, was a mixture of light and darkness. The sun outside was bright, but inside my Daddy’s workshop, the light was murky at best; sunlight only peeking through the cracks, illuminating dust motes and sawdust in the air. The walls were corrugated tin—dull metal corduroy encasing, enclosing. I was only three or maybe four, without the words to understand, without the words to tell.

“Do you want to see what makes babies?” my uncle said.

I backed away slowly, my arms at my sides, palms behind me, fingers splayed. I shook my head side-to-side timidly, terror-stricken. My eyes must have been as wide and full of fear as they felt.

“Don’t worry,” he said, with a note of amusement in his voice. “I won’t do it to you.”

The images that followed are engraved in my mind, though I didn’t know the words. His hand on his penis. The color of his ejaculate. I knew only that I was afraid. I don’t remember how I escaped, although I was standing by the door. I imagine he was laughing as the door closed behind me.

He didn’t touch me that day.

He would.

~

Some of my stories, I wish I could unread. Can you call a wound that never completely heals a scar? Words of pain weep bloody tears, staining my face, my hands, my life. That unhealed little girl’s heart still beats in my chest, and I wonder why I was protected from falling glass only to be damaged in other ways. Still, I’ve found divine grace in which to rest, and I find compassion written on my soul alongside the uglier words.         

~

The Easter sun shone in through the gauzy white curtains and the French doors leading out to the patio on the river. Five days—two more than doctors said we’d have—had passed since my father’s devastating stroke, and most of our immediate family was gathered to spend the day together at Hospice. The beauty of the facility and the graciousness of the staff gave us much comfort during those uncertain days, but my Mom and I had been there—and at the hospital, too, before he was transferred—nearly every minute. We were tired. Dad, proving himself once again to be the biggest, strongest, most contrary man in the world, had defied the medical establishment—never regain use of his right side, never speak or understand any language—by moving the arm and leg on the damaged side of his body (even standing up with assistance), communicating with gestures and spoken words. He still refused food and drinks, though, and his Living Will prevented any nutrition or fluid except by mouth. He seemed to be improving, but even though he had far exceeded the best case scenario presented by his doctors, we didn’t know if it would be enough. He hadn’t had any fluids since the first day in the hospital. Dehydration was taking its toll. Hope and despair kept trading places.

On Easter, though, the world looked brighter. The sun was shining. My brothers scared up a wheelchair and helped Dad into it. He pointed which way he wanted them to take him, and he put his foot down so that the wheelchair wouldn’t budge until he was ready to move. They spent a couple of hours outside in the sunshine, surrounded by trees and flowers. Dad was in a hospital gown, his own pajama pants, and socks with no shoes. The ensemble was topped off with my oldest brother’s bright white Adidas ball cap. Dad was full of personality that day—more himself than he’d been since the stroke. He played jokes on grandkids and visitors; we even heard him laugh—a jagged, rough, broken, joyful laugh.

While the boys had him occupied outside, I took a shower and tried to rest.  Nights alone with only me, Mom, and Dad were difficult, even with the Hospice staff a call button away. I was sleeping, when I slept, on a pullout couch. Dad was restless, and even with half his body not working, he was stronger than we were. He’d fallen more than once trying to get up by himself, and he fought us when we tried to help him. The constant struggle was stressful.

When Dad was ready to come back inside, Mom took pictures as each family member gave him a hug. Dad had always been famous for his bear hugs—hugs that found your feet floorless, your back cracked, and your breath uncatchable. He hugged everyone, all the time—I don’t think I ever saw him without being wrapped up in his safe embrace. 

When it was my turn, I walked over to his wheelchair with my arms extended and a big smile on my face.

“Can I have a hug, Daddy?” 

He stopped smiling. He set his jaw, and he shook his head, side-to-side.

He said no. 

I laughed—a fake laugh—and put my arms around him anyway. But my heart was pierced. Broken.

I was already putting off my grief.  I didn’t want to mourn him while he was still breathing. I shoved the unexpected hurt of that moment and its unshed tears into the compartment in my mind alongside the fathomless loss of my father. I hid myself in busyness, taking care of little things. Taking care of other people. 

Every moment of my life, I knew unquestionably that my father loved me. I knew that I could count on him. I had seen him drop everything and drive six hours just because I called and said I needed his help. But on that day, in that moment, he rejected me. He couldn’t speak well enough to explain—and I was afraid to ask.

The unexpected hurt of that moment still holds me. I’m haunted. He’s gone now, and I will never know why he withheld that hug.

~

I remember when I was a little girl, and Daddy and I were playing a game. I remember that, somehow, I got hurt. I remember crying while he held me.  I remember him saying that he was sorry. I remember that he said, “I love you. I would never hurt you on purpose.”

~

As Easter waned, Dad was stretched out in the too-small hospital bed, his six-foot, six-inch height exactly matching the length of the mattress. The light through the window was softer now, the blue walls almost smoky gray in the evening light. The room felt hushed after all the excitement and visitors of the day, and it was just my Dad and me.

I knelt by the bed. After the first night when he fell out of it, the Hospice nurses lowered it as close to the floor as it would go. I looked into my Dad’s eyes, and the tears I’d been suppressing came unbidden. I saw love and compassion in his face. I laid my head on his chest, and I wept. His left hand, the one he could control, smoothed my hair until my tears stopped.

Dreama Pritt, Marshall University alumna and current member of the MU English Department, is a Maier Award-winning and AWP 2013 Intro Journals Project-nominated author whose publishing credits include Et Cetera and Christianity Today's SmallGroups.com. Her essay “Remembering a Legend” was highlighted as part of a Creative Non-Fiction Panel at the 2012 COLA Research and Creativity Conference.