Just Breathe

This week’s guest author, Dale Long, reflects upon grief. Other pieces in this series have focused on other aspects of dying, but grief and mourning are important too. As Larry Librach used to say, the palliative care physician supports the caregivers and loved ones as well as the one dying.

by Dale Long

“I am spending my summer vacation skulking sterile hallways laden with the smell of antiseptic that barely conceals an­other, more cloying, odour that I do not want to know the source of. I sleep on pins and needles. I eat too little and drink too much. Most of the time, I sit and watch the clouds tick away the minutes as the al­most imperceptible hiss of oxygen and my mother’s quiet breaths create a white noise that blankets my brain.

Skin, shrunken and loose, painted in vi­olent blues, angry reds and sullen browns, sporting tubes that deliver chemical con­coctions. Clear liquids meant to sustain, but not to cure because there is no cure. Cures are for the lucky, the very lucky.

Life drains through those same tubes, through ragged breaths, through tears.

I know she is like me, that the end is just that, the end. No credits, no shining beyond, just a suffocating blackness. It scares me and, I believe, it is that fear that keeps her hanging on when each breath is a labour. When each breath offers no com­fort, but means another minute; another moment that is, not is not.

The hospital rooms change. Some are shiny and new, some don’t hold their age very well with chipped paint, stained and drooping ceiling tiles, ancient furniture. The nurses change too, but aside from their physical appearance they are all the same; smiles on the outside that hide the pain on the inside. I wonder how they cope. Day in and day out they see the people come in but very rarely leave, at least in the parts of the hospital I’ve been haunting.

They arrive on soft shoe with a quiet smile and a hushed greeting. They remember her from the last visit and hoped they wouldn’t see her again; that she was one of the lucky few, but there she is. Morphine addled on some days and yet sharp and alert on others.

Hope flares and is quickly doused. We ride the rollercoaster of emotions from the lows to the dizzy highs, made higher by the depths of the lows.

There are days when, sitting there listen­ing to her sleep and watching the clouds, I don’t feel anything at all. It’s like the emo­tions have been wrung out of me and I’m left feeling bruised and empty, like my mom’s arm.

I take a deep breath and feel guilty to have that luxury. I hold it hoping that in doing so I can stop time because if I can stop it, then surely I can reverse it, right?

How did I spend my summer vacation? Watching time slip through my fingers. My mom’s time. Like summer sliding into au­tumn, one life nears its end while ours con­tinues on. The difference is the hole left in the passing.”

I wrote that for the Word Weaver, a newsletter published by the writing community I belong to (the Writers’ Community of Durham Region) two years ago just after my mother had passed away. In truth, it was a way to ease my pain, to close the door gently after a long journey.

In reality my mother died of a broken hip a year prior to that. On her way to the kitchen to yell at my father for doing something wrong, she tripped on her oxygen hose and fell. There is truth in that statement but not the complete truth.

My mother, an avid and enthusiastic smoker, started dying five years ago

My mother, an avid and enthusiastic smoker, started dying five years ago, when the doctor told her she had cardio pulmonary disease, COPD, brought on by her years in the 60s ad 70s working as a hairdresser and all the years of heavy smoking. I think my mother single handedly kept the tobacco business going.

She resented and ignored the doctor at first but eventually gave up smoking. Well, gave up is not exactly right. She mostly gave up. And if we are being honest, it made her miserable and me angry at her for it. After all, it was just COPD. It’s not like it was cancer, right? Nobody told me it was a life threatening illness. No, that’s wrong, they probably did but I chose not to listen. It wasn’t cancer and in my head, there was relief. Everything else was small potatoes.

What no one prepared us for was how it would change not only her, but also us. Sure they told us there were people we could talk to, but fresh-faced hospital supplied therapists quote verbatim from their textbooks. They try to draw out answers that aren’t there yet. They tell you it’s okay to be anxious or sad but they never tell you that you will feel angry. They never tell you that the person sitting in the bed, the one that looks like the person you knew, the vivacious, tell it like it is, easily angered but just as easily to laugh, family loving, tradition loving woman would become someone else. They never told us that this disease took the woman that was my mother away and replaced her with two versions of her. One, a spiteful, angry woman, the other a childlike version.

What no one told us and what I later suspected was that she may have suffered from a series of small strokes or had something similar to altitude sickness due to the lack of oxygen getting from her lungs to her blood.

The ugly side of seeing someone go through a prolonged illness is inside the people that bear witness. Everyone deals with it differently. I blamed her. I thought she wasn’t trying hard enough. I blamed her for resenting giving up smoking, mostly, and accused her of holding a grudge. I was angry at the system’s indifference. I got so angry with her, I started avoiding her. I didn’t visit much. I didn’t want to argue and felt she didn’t listen.

I am not proud of this. I was wrong. She was afraid, and I was a jerk

I am not proud of this. I was wrong. She was afraid, and I was a jerk, a colossal butthead.

My sister bore the brunt of dealing with my mom. She was errand girl and go between. She was peacekeeper and whipping girl. Under appreciated for all her pain.

My brother and I dealt with it in our own ways. His was emotional. I was the bully.

The end of an illness is never a smooth road for all involved. There are good days, lucid days and weeks of sitting by her during her coma while a callous, thoughtless, head nurse treated her like just another bed waster. This woman spoke about my mother like she wasn’t there. Or the days when she was strapped to a gurney in the hallway in the throws of dementia brought on by the anesthesia from her hip replacement. A side effect they knew about but didn’t know how to handle.

There are times when being a bully, a well-spoken bully, has its advantages.

I had to be that three times. Twice to “head” nurses, and once to a doctor with a wing named after him and an over inflated ego.

She was, to them, a bed. If they weren’t treating her, only maintaining her, their response was to send her home for her family to deal with.

But for every one of those poor care givers there are ten like the ones I spoke of in the beginning of this piece. Ten that loved my mother’s company, her apple sauce cake/muffins. Ten that carried her heart with theirs.

I’d like to thank each one of them for their compassion.

But in the end, my anger kept me distant. I held her hand on my brief visits. I calmed her down, I helped her breathe. I gritted my teeth. I thought she wasn’t trying hard enough.

And then she almost killed my father. Or so my clouded perception said. Truth was, the stress of dealing with her illness for so long stopped his heart. He dropped “dead” in the grocery parking lot on a rare trip out. Thankfully there were people around that knew exactly what to do. A grocery store manager and an off duty nurse. Angels, both of them.

I didn’t show her an advance copy of my book because I didn’t feel her illness was serious; I felt it was psychosomatic. I wanted the book to be a Christmas surprise.

I got the call that she had been taken to the hospital again. I had a migraine; I told them I’d see her in the morning.

I got the call that she had been taken to the hospital again. I had a migraine; I told them I’d see her in the morning.

For her, morning never came. I never got to show her my book. I never got to say goodbye. I never got the chance to help her breathe again.

And I blamed myself.

I coped with it incorrectly. I let my own inconvenience cloud my empathy.

For someone who was so loud in life, she slipped out of it quietly with only my dad and her brother at her side.

I felt nothing. Yes I was sad, in moments, but that crushing grief never took hold. Not that I wouldn’t let it, which I am wont to do, but it just wasn’t there. Christmas that year was quiet. I waited for her ghost to “lower the boom”, but it never came.

Then this Christmas, after having written this piece I recognized the fog of deception I wore. I finally acknowledged the guilt and regret that I carried.

Prolonged illness and death affect us all differently. I think it took my wife’s own brush with it, for cancer to come calling, for me to understand. I saw the fear in her eyes, could hear it in her voice, feel it in her embrace, and the knowledge that I was powerless to do anything scared me more than I’d like to admit. I could finally see through my mom’s eyes. My chest tightened with a sudden lack of breath that never left me throughout the course of my wife’s treatments.

On the night of Christmas day, as I reached for the light switch on the manger, something compelled me to wind the music box. It is the same song as the one in my mom’s manger. As the last notes of Silent Night twinkled softly, I turned off the light and offered to the quiet room, to the fading of the Christmas magic, a tear stained, “Good night mom, Merry Christmas.”

About the Author:

Dale’s deep sense of tradition and his mix of Newfoundland and Scottish heritage lends a richness and old school flavour to his writing.
When he’s not writing horror or collaborating on a series of interconnected dark fantasy stories or dystopian science fiction, Dale likes to write old fashioned, Dickens-esque, Christmas stories and blog about his writing journey. Dale has published The Good King, recounting the last days of King Wenceslas, and is currently seeking publication of his second Christmas story, Archibald and the Gentlemen Three.
Dale is a regular participant in the Muskoka Novel Marathon, a 72-hour writing marathon that raises money for adult literacy programs for the Simcoe/Muskoka area, and is a member of the Writers’ Community of Durham Region.

Connect with Dale on his blog, Goodreads, Facebook or Twitter.