Excerpt from THE CAREGIVER’S COMPANION:

Preface

On November 19, 2012 my husband, Ron Smith, suffered a massive ischemic stroke to his brain stem. During his recovery, still an ongoing process, he wrote a powerful book about his experience—The Defiant Mind: Living Inside a Stroke. Having lost the use of his right side, including his arm and hand, he composed the work with his left index finger, typing the work’s three hundred plus pages one letter at a time. Today we both continue to cope with the disabling aftershocks of his stroke.

Since the book’s publication Ron has spoken to literally thousands of people?fellow stroke survivors, health care professionals, writing groups, arts gatherings, diverse clubs, library goers and general readers. During these events I was often asked if I had written my side of the story. My response to this question was usually a wan smile and a shrug. To be honest, the thought of writing such a book was not something I felt capable of doing. Being a caregiver 24/7, and maintaining a large house and garden sapped most of my energy. When there was free time in which to write, I preferred recreation and escape. Writing a book about caregiving was not where my literary aspirations lay. I had other projects. Nothing to do with stroke. Or with caregiving.

Such was my state of mind until Thursday morning, September 20, 2018. Ron had agreed to speak at a book club hosted by our neighbour and friend, Bev Coolican. Inevitably, late in the meeting, over coffee and pastries, the familiar questions came up.

“What was it like for you, Pat? Where’s your book? Where’s the companion volume?”

I gave the ladies my wan smile, my wry shrug.

“But you must write it!” they insisted. “And we’ll help! We’ve had experience assisting an author produce a book.”

Appreciative of their fulsome praise for The Defiant Mind, I was taken aback by their enthusiasm for a potential book of mine. Their excitement was contagious.

Yes, I thought.

Why not?

One way or another, I’d been a caregiver for many years, intensely so during the first three years, after Ron left the hospital and continued to recuperate at home. My experience might be worth sharing.  My voice might be helpful. With the sale of our large home and the move into our townhouse, my workload had lessened. I now had more time to write, I realized. And, if I needed help, I’d have these discerning ladies to talk with. But most importantly, for the first time since Ron’s stroke, I also felt I had the emotional and physical strength to accept the challenge the book club and so many others had posed.

I knew already the kind of book I wanted to write.  It would not be a training manual with instructions for dressing, bathing, tripping hazards and so forth; nor an hour-by-hour guide to cooking meals and managing time; nor an analysis of care homes, their virtues and their limitations—valuable as these instructional books would be.  I wanted my book—this book—to be something else: a companion, in the sense of a compassionate ally, for those who find themselves, perhaps abruptly, needing to care for others.  I would begin with what Ron’s stroke meant to me as well as to him and write about the critical demands and the marvellous rewards of caring—of exercising and extending care. I would also write about the adventures that otherwise would not have chanced our way had it not been for Ron’s stroke.

Strokes wreak havoc on marriages. Less than half survive a brain attack. Caring for stroke survivors or other physically and mentally challenged family members is exhausting work. Every part of one’s being is tested. And, once a caregiver has managed to achieve a state of balance in her (or his) life, revisiting the past—the shock, the trials, the grief—and putting it down in writing is not a prospect that appeals.

Yet, over time, I have come to appreciate that being a caregiver is essential for anyone who wants to live a meaningful and satisfying life. If we were to honour the values that caregiving embodies, we would all become nurturers of life and of the marvellous Earth we are privileged to call home. We would proudly call ourselves caregivers.

By sharing the wisdom I have gleaned from my experience and by sharing the example of other caregivers, stroke survivors, medical practitioners, friends, family, and the support I have found in books, I trust that I might help ease the burden a caregiver daily assumes; that I might offer a compassionate voice in times of despair and suggest some tips for the road ahead. I want to be a companion and a friend who advocates for caregivers everywhere, who illustrates the true value of this work, and who demonstrates that caregiving is the most vital thing we do.

 

 

From THE GOLF WIDOW’S REVENGE

Chapter 8:Golf Widow and Women’s Lib

One sunny Sunday in May in the year of Our Lord, One Thousand Nine Hundred and Eighty-Three, as I was haunting the local schoolyard with my children at 7:00 A.M., I received a dramatic and sudden illumination. I was a single parent. The shock of this discovery left me momentarily dazed and bemused, and I did not see the return of the swing as it came back toward me. I was knocked down by the blow, but in response to my children’s concerned cries I leapt quickly to my feet and prudently moved away from the swings. I was a single parent. Why had I not been able to see it before? In my bemused daze I tripped over the teeter-totter, sustaining a tear in my new beige slacks and a minor laceration to the knee. I arose and headed carefully in another direction. But I was a married woman. Wasn’t there some sort of contradiction here? So thinking, I bumped my head inadvertently on the monkey bars and fell once more to my knees, ripping the knee out of the other pant leg. A slight cut had opened above my left eye, and a few drops of blood trickled into the pupil. I decided I had best stay where I was while pondering this deep, new insight into my situation.

To be more precise, the day was the second Sunday in May, the eighth day of May, or, in the special case of this year, the day was Mother’s Day. To be fair I must admit that Don had gotten the children up and dressed, and the three of them had prepared my breakfast and brought it to me in bed. There I had enjoyed the meal along with the vista of dawn breaking in the east. It was 5:00 A.M. In order to accommodate the prescribed Mother’s Day rituals, breakfast in bed had to be early so that Don could make his 6:56 A.M. tee time in the annual Mother’s Day Tournament. His handicap was now down to seven. His hand shook slightly as he poured my coffee, and I knew that his mind was on the day’s play ahead. Low net was a prize that he had often won. His heart was now set on winning low gross. Breaking eighty had become old hat. Shooting par was now the big thrill, and shooting a sub par round was starting to become a definite possibility. Would today be the day?

Thus it happened that on Mother’s Day at approximately seven in the morning on the grounds of the Chimo Elementary School I learned my lesson. I had my epiphany. I was a single parent. Or, to be more precise, for the first time I acknowledged that I was a golf widow. I daubed the cut above my eye with my lace-trimmed handkerchief, assumed a pose reminiscent of Rodin’s Thinker, and pursued this novel train of thought. For years I had avoided the truth of my situation. I had consoled myself with proverbial wisdom, thinking every couple is not a pair and knowing that everyone thinks her own burden the heaviest. I had long appreciated the fact that marrying is easy but housekeeping is hard, and I had known for many a year that ye kenna keep a man on land if his heart’s at sea. But I was not wholly satisfied. I suffered from a vague discontent, knowing that for other women Sundays could be different.

I also suffered from the additional humiliation of knowing that I was a wimp. Thanks to the women’s liberation movement, I had had my consciousness raised to the point where I knew that if Sundays were not all that I wished I should make them so. If I were a real woman, I would stand up for my rights and demand equal time on the course and in the home. I would demand that Don match me diaper for diaper, tea for tee, bottle for bottle, pin for pin, and apron for apron.

If I were a real woman, I would sign him up for a couple’s workshop, insisting that there were a few problem areas in our relationship that we needed to iron out. Yet I never did, knowing full well what his response would be. He would ask which iron he should take, his six or his seven. Or would I want him to pack the steam iron? Chortle. Chortle. As far as Don was concerned, I was the one with the problem. And suddenly, I began to see that he just could be right.

What if it were the case that all along I had been deluding myself, pretending that Don was married to me and avoiding the truth that he was wedded to his golf? This error in my thinking would necessarily lead me to the wrong conclusions. However, if I were to revise my propositions, what would this do to the conclusions? If Don were married to his golf game, then it would be only right and proper that he should spend his Sundays with her, fondling his clubs in search of the holes in her close-shaven greens. Of course he would be better off with better balls. Why hadn’t I been able to appreciate this before?

Instead of wallowing in self-pity, I would start operating on different assumptions. Instead of resenting Don’s golf, I would learn to recognize it for what it was. Having rid myself of the last of my illusions, I could get on with the job of rearing the children and running the household with a clear sense of purpose and a new sense of pride. I would ask myself, “What would the single parent do in this situation?” and give myself back the self-evident answer: “She would do it herself.”

Since May 8, 1983, I have become a changed woman, a woman proud of her accomplishments. Instead of wasting time thinking that Don ought to be around more of the time, taking a greater interest in his children and their upbringing, or even spending more time with his wife, I have come to cherish my newly conceived independence. I had long appreciated that Don did not wish to be troubled by domestic trivia that might throw him off his game. I could understand that chopping wood was bad since it could lead to calluses and blisters on his hand that would destroy his putting touch. I knew that expecting him to change a tire was also out of the question since he might wrench his arm while pumping the jack and throw off his swing for weeks. I could appreciate that if I were left in charge of things at home he would be free to develop the mental concentration necessary to keep his handicap going in the right direction. Consequently, I had become quite handy about the house after years of doing the little odd jobs that have habitually been the province of the male. Now, I realized, I should take pride in these accomplishments.

After all, any woman who could start off unable to grasp the mechanics involved in changing a light bulb at the commencement of her married life and find herself fourteen years later able to change the ballast in her fluorescent lights should be proud of herself. Any woman ale to plan the rewiring for an addition to the house that she had designed and would soon commence construction on must needs be, in a very significant sense, liberated. Any woman who could go from a total lack of appreciation of car maintenance to giving her 1966 Chevrolet Bel-Air a lube and oil and a tune-up must be well on her way to reliance on self. Any woman who could rotate the tires on her car by simply lifting up the rear end with her right hand and then bending over to yank off the hubcap with her left and loosen the bolts with her teeth should, justifiably, think that Wonder Woman had better tighten her lasso.

I perceived that Sundays could be different. I could hire a regular baby-sitter and do whatever I pleased. I figured out that what was good enough for God and the avid golfer was good enough for me. Now we are all free to rest from our regular activities and do whatever it is that pleases us most.

Best of all, I stopped taking Don’s golf as a personal affront. I became detached from it in the finest scientific spirit and began to gain new insights into the behaviour of the golfer that before had been obscured by my own prejudices and false expectations. I began to see the thing in its true light.

Now when I strap on my tool belt and reach down for my chainsaw and hard hat on my way out to the back of our property to cut down a few Douglas firs for the wood for the addition, I have a new sense of pride in my abilities. These are skills I would not have acquired had it not been for Don’s golf. Not only can I sew and reap, cook and clean; I can also build and weld. Now when I slip on my lumberjack boots, put on my spurs and run up a tree, I no longer feel that I am not the one who ought to be doing this. Now I am more inclined to shout, “Germaine Greer, look out! Particularly if you are standing ‘neath this tree.”

 

From A SONG FOR MY DAUGHTER

Part One: THE RIVER

Downstream, where the dark river leaves the mountain clefts and begins her lazy westward swing towards the sea, I fish for salmon.
I have been fishing here since I was a little girl. But I am old now. It is time I laid down my gear for good, time for my daughter to come home. Rheumatism swells my joints and some days my muscles ache so badly I just want to stay in bed and doze beneath warm blankets. It is time I had some grandchildren to play with, to sing to, to tell stories to.
When I fish I use a long pole and a dip net. I hold the end of the pole in one hand and, with the other, I work to keep the line attached to the net taut, so its mouth stays open to welcome the catch. When I fish I always sing. But the song I sing today is a special song—a song for my daughter—my spirit child. It goes like this.

Come Swimmer, Gentle Spawner,
Beloved Daughter, born of water.
Swim Daughter to your Mother.
Swim to me.
Set us free.

A fish’s tail smacks the surface of the river. I pull the rope to close the net and lift it out of the water. I have caught a salmon, a small spring. My catch pleases me. I drop my pole, plunge my hand in the net and crook my finger through the salmon’s gill. As I raise her in the air, she wriggles, trying to escape.
“It’s all right, child. I will not hurt you.”
I stroke her back and gently return her to the river.
“Swim to the village of the Salmon People. Sing my song to your sister. Tell her to come home.”
A little ways upstream from me there’s a large stump, high on the river bank, left dry after last year’s run-off. Propped on its side, with its roots in the air, the smooth curves of the stump form a chair where I like to sit. At the base of the stump I keep a case of beer tucked in the sand. I walk over to the stump, sit down, pull a bottle out of the case, twist off the cap and take a deep swig. The taste of cold beer on my tongue is tart. Settling back against the wood, I shut my eyes and listen to the river.

*

Under the ocean, far away, a young Salmon Woman looks up from her weaving. She hears my song. The other Salmon People keep working. They cannot hear me and they do not see my daughter put down her basketry, walk out of the lodge and leave the village. She follows my voice caressing her through the vibrations of the blue green water. She lifts her eyes skyward. Radiant sunlight encircles her.

I call again.

She rises.

Towards the light.

And my voice.

She rises.

*

When I open my eyes it is dark. For a moment I fear I’m too late, that the story has begun without me. Casting deep into my memory, where all stories are held, I am relieved to discover my daughter has just arrived. She is here and it is time to tell her story.

 

From DOUBLE BIND

Part One, Chapter One

Persephone Greenstreet awoke to find herself seated in the middle of a bus stop bench. She used the word “awoke” to describe her situation, but perhaps the phrase “came to her senses” was a more apt description since it seemed as if her senses were slowly returning to her after a long absence. Whatever the case, on awakening from what felt like a long, cold sleep, Persephone found herself seated in the middle of a bus stop bench.
As her gaze skimmed over the surface of her immediate surroundings she discovered new questions tumbling in on her mind. Where was the bus stop? How did she get here? What time was it? For that matter, what day was it? What city? What country? She knew it was a city for directly in front of her there were four lanes of traffic, two lanes going in one direction; two, in the other. And, while she was the sole occupant of the bus stop bench, there were hordes of pedestrians milling behind her. Once she adjusted to this initial flurry of activity, her mind relaxed and she stared in disbelief at the vehicles passing on the street. A bus pulled up to the curb and discharged passengers from its two exits, one at the back and one at the front.
“Hey, lady. Do ya want a ride or don’t ya?” shouted the bus driver, glowering down at her through his steel-rimmed glasses.
Startled, Persephone shook her head involuntarily, and the bus driver, obviously annoyed with her stupidity, slammed the front doors of the bus and bulled his way back into the flow of traffic.
Surprised by the shout and the sudden lurch of the bus, Persephone’s mind leapt back into action, posing the former questions and a flood of new ones simultaneously. Where was she? How did she get here? Did she have any clothes on? Any shoes? Where was her purse? Did she have any money? What would she do if she didn’t have any money? Hold it, hold it, hold it, Persephone, old girl. This was getting her anywhere. Calm down and take things one at a time. Start with your feet.
Shoes? Check.
Stockings? Check.
Skirt? Check.
Blouse? Check.
Sweater? Check.
Watch? Stopped.
Head? Check.
Eyes, ears, nose, mouth, arms, legs, hands, feet–all check.
What a pleasing sensation it was to make contact with the familiar. But something was missing. Her purse! After a quick review of the inventory she realized her purse was missing. Be calm, she thought. Remember your scientific training. It was important to maintain control of her faculties. She would sooner die than begin to hallucinate. What a curious thought. She took a quick look at the perfect blue sky above. Only the tops of buildings interrupted its intense beauty. Her purse wasn’t on the bus stop bench and it wasn’t under it, although it was difficult to be certain, with all the marching legs obscuring her vision. In any case, she told herself, she had more important matters at hand. Like where was she? And how did she get here?
What she needed was a place to be alone, preferably a quiet place to sort things out. Yet she hesitated to leave the bench and the secure feel of the boards against her bum.
Persephone had always suspected that the most important sense was touch. No, that wasn’t quite true. This was a conclusion which had come to her slowly, over a period of some months, when, at slack periods at work, or at home ironing her husband’s shirts, she would imagine herself called upon to make a decision about which one of her senses she would give up when the crunch came. The crunch varied. On occasion she worried she had ingested too many soaps through long winter days. Melodrama. Her life could so easily have become a Wagnerian spectacle.

SCENE ONE: Persephone Greenstreet, prisoner of war in a Nazi prison camp.

“Miss Greenstreet, because of your implacable resistance to all methods of torture devised by man, and your refusal to yield those bits of top secret, classified information which you possess and which we want, you will have to forfeit your most treasured sense. Which one is it?

SCENE TWO: Persephone Greenstreet, anxious mother, sitting in a hospital waiting room.
“Mrs. Greenstreet, there is nothing that medical science can do to save the life of your child. There is only one thing that will save her. You must give up your most treasured sense. Which one is it?

The crunch varied but initially the question was always the same. Which one was it? Which one was it?