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/

Flotsam

by Fabrizia Faustinella

The sky was darkening, crowded by black, ominous clouds blown by a forceful wind. Dust and leaves swirled in the air, waiting for the rain to ground them again. I could feel and smell the humidity from the Gulf. I almost could smell the sea. I certainly could hear the loud shrieks of the seagulls and saw several picking up trash in the desolated parking lot of the grocery store. The horizon was a brilliant crimson, spectacular and eerie. Was the sun setting in a large pool of blood? Why do I think such stupid things? Vivid imagination or cognitive distortion? Forget it. I’d better hurry up. The storm was coming.

I loaded the groceries in the trunk of the car and I drove away. Traffic was light. It felt strange to see the entire road ahead of me, almost deserted. I didn’t want to be the only one out there when the storm hit and I tried to speed up a little. Nobody was waiting for me at home, and I wanted to get back before dark. I forgot to leave the lights on when I left, and I didn’t look forward to the darkness of the driveway and backyard.

I had to stop at a red light. As the lid of a garbage container blew away in the wind, plastic bags, paper cups, empty cans, and all kind of debris were sent flying and skittering across the ground. Farther ahead, on the sidewalk, I saw a man in a wheelchair, alone. He struggled to move forward. He was one of the many homeless people who roam the streets of our city. It’s hard enough to be homeless, but to be homeless and stuck in a wheelchair, how much harder can that get?

The traffic light turned green. I drove ahead and past him. The man was hunched over, face down, trying to negotiate the uneven sidewalk. The wheelchair was loaded with plastic bags overflowing with what were clearly all his worldly possessions.

I kept on driving while asking myself, You are not going to leave this man stuck on the sidewalk with a big storm approaching, are you? Of course not. So I drove ahead until I found a place where I could safely turn around. I went back and found him in the same spot, not having progressed one inch I parked, got out of the car, and approached him. “Hi, sir, can I help you? Where are you trying to go?” There wasn’t much around, a hamburger joint, a gas station, a bus stop, and …

“To that Luby’s Cafeteria, up there,” he said. “Could you find someone to push me?”

“Well, I’m here, sir. Nobody else is around. I don’t mind doing that.” The cafeteria was located on the top of a small hill. My city is totally flat and floods all the time. Maybe that’s why they built the cafeteria on an artificial hill. But now, what a challenge it would be to push a man in a wheelchair up there.

He was older, most likely mid-seventies, with curly, unkempt hair and a large black-and-gray beard. He wore paper scrubs, most likely given to him at the time of discharge from a local hospital. They were totally worn out, and the original blue color had faded away under layers of dirt and stains. He wore half-gloves, his fingers sticking out, revealing long, broken yellow nails. He had a strong smell of urine and old sweat. A roll of toilet paper had fallen out of one of the plastic bags, and I picked it up. The bags were on their last leg too, full of holes, ready to burst open at any time, their contents in serious jeopardy. Old food containers, boxes of crackers, diapers, bottles of water and soda, leaking and half empty, cups, plastic forks, pieces of paper with unreadable notes, and God only knows what else all crammed together and stuck to one another.

“I cannot believe I am in this situation and that I have to be pushed by a woman. I’m sorry, ma’am. This is not easy,” the man said as I was struggling to keep a straight path on the crooked sidewalk, which was littered with small branches fallen from the oak trees during the previous storm mixed with paper and plastic debris, some floating in puddles of water.

The wind didn’t help. It was adding weight and resistance to the wheelchair. I was concerned about engaging the uphill driveway of the cafeteria. What if I couldn’t push his weight uphill and lost control of the wheelchair? What if it crashed and injured this poor man? I started thinking of all sorts of disastrous scenarios. When I got there I  pushed so very hard, summoning all my strength, my body at a forty-five-degree angle on the slope. Amidst some puffing and grunting, I finally got to the top. I guess all the gym visits and weight lifting had paid off. I seemed stronger than what I thought.

“I can’t go inside, ma’am. My personal hygiene is very poor. I wouldn’t dare go into a restaurant like this.”

“I can go in. What would you like to eat?”

“I have a Luby’s card, ma’am. Let me look for it.”

“Don’t worry about it. Save the card, sir. I can go in and get you something,” I said with a slight urgency in my voice, as it was getting late.

“Don’t rush me, please. You see, people are impatient. Don’t rush me. I’ll find the card.” He pulled out three different wallets from various pockets of a black jacket. The wallets were bursting with receipts, business cards, pieces of paper meticulously folded, stickers, remnants of a life of struggles. As he sorted through them, uttering words of dismay at not being able to find his precious Luby’s card, he and became increasingly frustrated. I waited, suspended, wondering how long this would take, thinking of what to do, until I said in a calm, soothing voice, “Well, while you look for the card, why don’t I go inside? Please, just tell me what you would like to eat and I’ll be glad to get it for you.”

“Rice and gravy, lima beans, and three cornbread muffins.”

“What about some meat or fish?”

“No, that’ll be enough. Rice and gravy, lima beans, and three cornbread muffins.”

I insisted on getting something else as well, and he eventually asked for meat loaf, most likely one of the few meat preparations his poor dentition would have allowed him to eat, and a cup of ice.

I went inside. No line at the counter. I ordered the food. No meat loaf was available. I decided to get chicken. I hoped it was okay with him. I got the cup of ice, paid, and stepped outside.

“Here is the food, sir, but they didn’t have meat loaf, so I got you chicken.”

“That’s okay, thank you. I’m sorry I was impatient with you. You’re the only one who has helped me. We get so frustrated by our predicament that we end up taking our frustration out on the people who are there for us. I also apologize to you for smelling so bad. I apologize for being in your presence in such a state of disrepair,” he said with shame in his voice, shaking his head, barely looking up at me. We heard laughter coming from inside the cafeteria.

“You see, people laugh, and they move on with their lives. They laugh and they’re busy and have no compassion. That’s why I stopped going to church a long time ago. I realized that people go to church and say they believe in God, but then they have no compassion. So what good does it do, going to church like that and having no compassion?”

“What’s your name, sir?”

“Jimmy. My name is Jimmy.”

“Jimmy, how did you get in this situation?”

“I don’t want to talk about that now,” he said with pain and a hint of resentment in his voice, “but I ask the Lord: what have I done to deserve this? I have robbed no banks, I haven’t used no drugs, I haven’t stolen from people, I haven’t killed anybody, and here I am. Why am I being punished like this, Lord? Lord, help me! I’ve been a good man, help me!” He lowered his head even more, saliva drooling out of his mouth, dripping on the paper scrubs.

“I’m sorry, ma’am, I’m sorry…”

“No need to be, sir. I am sorry for you. This is a terrible situation.”

“It sure is terrible, ma’am.”

I patted him on his shoulder. “Should I push you there?” I pointed at a sheltered place on the side of the cafeteria where he could eat and maybe spend the night.

“No,” he answered, “I’d like to stay here a little longer.”

“But, sir, how did you even get on that sidewalk?” I blurted out, bewildered that anybody could get around in his condition and manage to survive. “I mean, where are you coming from? Where were you before? I’ve never seen you on this side of town. Who are you?”

“Don’t worry about it. I am … flotsam … just flotsam.”

Flotsam? What did that mean? I’d never heard that word before. I didn’t know the meaning of it, but I didn’t dare ask.

It was definitely late now and dark, streetlamps casting an uncertain yellow light on the street. It was starting to rain. I said, “I’m going now. I’ll be thinking of you, Jimmy. I wish I could do more for you.”

“Thank you for your kindness,” he said.

I headed back to the car, my hair scrambled by the wind, raindrops falling on my face. I drove home. As expected, my backyard was very dark, but not as dark as my thoughts and my heart. I opened the door, stepped inside, and felt guilt at the comfort of my home. I decided to burn a candle for Jimmy, but what good was that going to do? I did it anyway, still hoping the prayer would somehow help. Maybe it would help me more than Jimmy. It would help me to accept the intrinsic and inescapable unfairness of life, which no thought process has ever been able to reconcile in my mind.

Then I sat at the computer to search for the meaning of “flotsam.” This is what I found: 1. floating wreckage of a ship or its cargo; floating debris washed up by the tide; 2. a floating population as of emigrants or castaways; 3. miscellaneous or unimportant material.

Human flotsam. That’s what he thought of himself. The wreckage of a life, the product of a broken existence, fallen into pieces that could not be glued together any longer and made whole again.

Fabrizia Faustinella is a physician and filmmaker. She grew up in Italy and moved to the United States where she practices as an internist in the Texas Medical Center in Houston, Texas. Caring for the undeserved and the homeless has inspired her to write about her experiences in several patient-centered essays which have been published in academic and literary journals alike. She recently wrote, directed and produced The Dark Side of the Moon, a film-documentary about the root causes of homelessness and the hardship of street life.