Russia

Even though I am no longer adding to this blog, I do check in periodically to monitor the traffic. The site helpfully breaks it down to the countries where people are searching from. I am always intrigued and delighted by the universality of interest but one country in particular piques my interest. Several times through the year, there are bursts of activity from Russia, usually hundreds of hits over a week and then nothing for months until the next surge. I would be very interested to know why this is happening. I invite my Russian readers to enlighten me.

It's nearly Parkinson Superwalk time. Communities across Canada will be holding events in September to raise money for Parkinson Canada. I am working with them by offering proceeds from the sale of my book to this campaign. Visit the publisher's website to purchase: http://www.friesenpress.com/bookstore/title/119734000016083359/Claire-Verney-Notes-of-a-Love-Song. From now till the end of September, for every hardcover I sell, I will give $5.00; for every softcover, $3.00; for every ebook, $1.00.

New Ventures

http://www.friesenpress.com/bookstore/title/119734000016083359/Claire-Verney-Notes-of-a-Love-Song

The significance of the day is not lost on me as I make this announcement. It would have been my father's 96th birthday today. Jack Verney was a published writer of history, producing two books in the years after his long teaching career. The Good Regiment: The Carignan-Salières Regiment in Canada, 1663-1668 was published in 1991 when he was 72, and O'Callaghan: the Making and Unmaking of a Rebel was published in 1994. The family tradition seems to be the pursuit of writing in retirement with my brother Peter Verney also following this path with the publication of his family history entitled Making a Difference: the Lives of Jack and Joan Verney, published in 2010. Now it is my turn. Notes of a Love Song: Day-to-Day with Parkinson's Disease has just been released. It is an edited version of this blog and, I hope, a much more accessible format for readers. It is available at the above link to Friesen Press in hardcover, softcover and as an ebook. In the coming weeks it will be more widely available from other booksellers such as Amazon.

It is my hope that this work will find its way into the hands of health professionals, caregivers and family members who are working with loved ones afflicted with Parkinson's Disease with Dementia, especially those who choose to care for them at home. Dr.Wendy Yeomans, Medical Director of the Palliative Care Programme at Vancouver General Hospital and Clinical Instructor in the Department of Palliative Medicine at the University of British Columbia has written a cogent forward discussing the choices available to us in the field of palliative care.

Thank you to those who have followed this blog so faithfully and to those who are newly arrived. It is your overwhelmingly positive response that inspired me to pursue this project.

Feet on the Ground

She roared a bit too fast into the parking lot, music blaring. Perhaps not the best way to introduce herself to a new social group, she thought, turning the music off too late to have prevented the turning of heads. Today marked a beginning and an end.

Mid-November but the the thermometer read January. Layered clothing, warm hats, gloves, wind-breaker pants. She was stepping out on an expedition with a group of folks who were mostly new acquaintances. Her love of hiking could now be fully indulged, and since Michael's death she had been logging at least thirty kilometres a week with friends who would call spontaneously and pull her out. Nothing worked better than a hike to dispel the lingering wisps of sadness. At the very least she drags her sometimes reluctant dogs every morning for a brisk two to three kilometre spree but their aging, tired bodies allow little more. Weather is never an impediment for her.

The group of about thirty folks gathers weekly for an eight to ten kilometre hike on the region's vast network of trails through the Gatineau Park, her house merely minutes away from such stunning beauty. Three subgroups formed according to fitness levels. She confidently placed herself in the top group and found she had little trouble with the pace, impressed, in fact, with the overall fitness level of the sixty-plus age group. She was possibly the youngest but by no means the fittest.

She had had a plan: Three trips in two months - more travel than she has done in decades - allowed her to put life on hold for that time, to be distracted from her grief. Between journeys she concentrated mostly on estate matters but little else, except to have a policy of never turning down a social invitation. Once she got her feet on the ground after her last journey in early November, though, she had vowed to make some life decisions. Nothing huge, of course. The conventional wisdom is to do nothing rash for a year. She finds herself rattling around in her now over-large house that holds too many ghosts and sweet memories. When her children descend upon her, the house easily accommodates them, but those occasions are now rare. She will assess her needs in the spring and consider divesting herself of what now seems like a mansion. Where she might go is an unanswered question. This house needs life and love to fill it, not the empty silence that now prevails.

In the meantime there is a winter looming. Already the invitations have slowed as everyone hunkers down into their fall routines and prepares for a Canadian winter. For the first time ever she finds herself dreading it, understanding in small measure why people might consider heading south for several months. But she is alone and not likely to pursue that option. Her home is here - for now.

On losing Michael she also lost her job. Golden handshake. Instant retirement. Sense of purpose dangling in the breeze. Focus required after so many years of her life charted out so intricately on the map of Parkinson's disease caregiving. She wonders how she will manage as a single woman with no responsibilities in the world except to herself. So much of her self-definition has been wrapped up in her thirty-four years of happy marriage, childrearing, caregiving, homeschooling, community service...loving. She knows little else so her heart immediately thinks of other ways to be of service to her world.

After years of caring for Michael through life and death, as well as logging many hours at the bedside of other terminally ill family members, she has developed a high comfort level with illness and the mystical process of dying. Her round-the-clock care of her husband allowed her to see the process in all its horror, mystery and beauty. Very little fazes her now. She has been urged to pursue some aspect of palliative care and she knows she is well-suited to the work. One night, immediately after returning home from the last adventure, she sat down at the computer and mused about the next step. Within seconds she found herself on a website for a local homeless shelter that, remarkably, is also home of the only hospice for the homeless in North America. Her fingers were filling out the online application form before she knew what she was doing. Before even completing and officially submitting it, somehow the channels were opened and an email dropped into her inbox thanking her for her application. Huh? How was that possible? Taking it as a sign, she continued to fill out the lengthy form and redundantly pressed the submit button. Within a few more seconds another email arrived giving her the dates of information sessions at the shelter, the first one being held the following night. The path seemed to be clear.

Everything happened quickly. Her interview was arranged for the afternoon following her first hike with her new group. A game-changing day. A police check is all that stands in her way to what might become her life work.


Photo by Claire Verney, November, 2013.

Flying Solo

The suitcase sat in an empty corner of her bedroom, labels dangling from its handle, its brand-newness glittering. Deep red, her favourite colour, and the recommended hard shell. The manufacturer promised it to be lightweight. Lightness of being was what she was aiming for. That and a tough exterior. Could the two be achieved together in anything other than luggage?

The days after Michael's death were filled with post-mortem duties: funeral, estate matters, and the necessary grieving. She had felt raw, emotions spilling over without regard for others, in the time after her children had left to return to their lives. The feral screams that had come out of her in those early days filled the forlorn house with a heavy sadness. Her throat burned from the sometimes uncontrollable spasms of despair that wracked her when she was totally alone. The dogs couldn't stay inside when she collapsed. They'd rush outside then slink back in, quietly observing her to be sure it was safe.

Her sleepless brain was muddled with all it had to do. The paperwork was staggering. She waited until she was alone to tackle any of it. Normally able to manage several tasks at once, she found she could only focus on a single job at a time, concentrating on the most important first. Much of it, after perusing a detailed list she had composed long before his death of all that would need attention, she left to collect dust on a dining room chair - her office  - for weeks. How do people who lose loved ones suddenly and tragically cope with the heavy load of administrative red tape? Michael's death had been expected and she still felt confused and overwhelmed some days. Friends kept her well distracted and away from home.

Family urged her to get busy and start traveling. Everyone, in fact, had a plan for Claire but Claire, who, during the years of caring for such infirmity, had not been able to see beyond the hour in front of her. She had rarely even allowed herself to imagine a future beyond Michael's onerous care. Invitations and suggestions flew in from far and wide. Her head spun with the possibilities of a vast world suddenly laid at her feet. Publish your blog; concentrate on your writing; visit the kids; do more volunteer work; travel to England and Israel. A possible but unlikely writing contract was presented. Even men, old and new, entered the scene to offer solace, some flattering, others disturbing. The ink on the death certificate was barely dry when she was asked out on her first date, a mildly awkward event over coffee that she accepted only because she didn't know how to say no without causing offence.

She sat and thought about her priorities. Her first port of call would be her daughter's home where a new grandson blossomed. That would be the September visit. Then she could nip off to Vancouver to a family wedding she had thought there would be no hope of attending. Attached to that would be a multitude of reunions as she visited a city she had once lived in forty years ago. That would be the October distraction. Then November might be a more decadent diversion to reconnect with an old friend who had suddenly and boldly materialized, at least on the internet, from the distant ether of her past. That one was crashing into her sleep and flushing her face. She scolded herself: What was she doing thinking such thoughts, so recently a widow? Indecent, and yet she felt a strange recklessness and no guilt.

But to accomplish all this she must face a major hurdle. Flying had been a nightmare, for decades invading sleep with horrific scenarios. In fact, for  thirty-four years she had avoided it except for the emergency trip back from Winnipeg in 2009;  Michael's Parkinson's psychosis had ramped up and out of control on what was to have been a restful and peaceful train journey across the country. She had been forced onto an airplane with him and hadn't even felt very nervous- had had no time to consider it in the urgency of his condition. In retrospect that had been the blessing that might have broken the torturous spell. Michael had beamed at her in the next seat, so obviously happy. She had gripped the seat tensely but hadn't felt the customary panic.

Could she do it again? Her strategy before her September flights was to not think about it. The nightmares were kept at bay. Even up to the moment of stepping onto the plane she was calm. Over the years of his care she had mastered the art of avoidance and staying only in the moment. She was hopeful.

There were two short flights required to get to Thunder Bay. She opted for the airline with the biggest vehicles, reasoning that they would be more stable. Her first flight, just after dawn and a sleepless night of November imaginings, was uncomfortable and angst-ridden but not paralyzing. She prayed and summoned Michael's assistance, wondering if the sudden flickering and malfunctioning of the television screen in front of her was his doing. Hardly comforting. The second flight the same. On arrival in Thunder Bay that morning she felt weakened, tired but relieved. The solid ground felt sacred but she resisted the urge to genuflect publicly. It might have been a combination of her overall fatigue with the anxiety that left her feeling ill the rest of the day. She chose not to think about the return flights and immersed herself in the loving glow of family.

Finally, at week's end she considered her options for the return journey. Should she just succumb to the anxiety? Could she somehow pharmaceutically alleviate the angst? With all her experience with Michael's anti-anxiety medications and their side effects, she was unwilling to try anything that might cause more disturbance in her brain as they sometimes had for him. Though alcohol was no longer a part of her life, she had had experience with its calming properties during anxious flights of her youth. She felt justified in its use as a medicine.

Another daughter who had come to Thunder Bay for a visit happened to be returning to her home at the same time of day. The two of them sidled into the tiny bar at this small airport and downed a quick glass of sour wine. Immediately a rosy heat permeated her body, a welcome calm. The last person to board, she nearly skipped onto the plane minutes before take-off and took her assigned middle seat next to an attractive older man. He struck up immediate conversation and when she confessed to her nervousness and the wine, he admitted he had detected both. He kept her engaged in vibrant chitchat the entire journey, only stopping when it came time to say good-bye. She hadn't had a single moment of fear; she thanked him and the wine.

The second flight home was more challenging with nobody willing to talk, an empty seat and a silent man - fellow sufferer? - next to her. She allowed herself no more wine knowing she had to drive as soon as she hit the ground in Ottawa. How ironic would that be to die in an alcohol-soaked car crash after surviving the flight?

And of course she did survive. Her rational brain, while she scrutinized the smiling faces of the flight attendants for subtle signs of panic, ran through all the comforting statistics as her knuckles turned white with landings and take-offs. At least she has now achieved a level of ease where, though she still thinks of every alternative mode of transportation to flying, she accepts there is nothing for it if she is going to spread her wings finally and participate in the world.

Instead of the usual nightmare the night before her first flight she dreamt she was a co-pilot in a small airplane with a faceless partner as pilot. Exhilaration and joy. A good omen.

Photograph of Claire Verney, taken by Anna Torontow in Thunder Bay, Ontario, September, 2013.

Eulogy

She stepped up to the podium. On contemplating this moment six months ago, she had told herself she couldn't possibly face a room full of people. She had decided there would only be a graveside service with immediate family and closest friends. The thought of anything more nearly sank her. 

But the children had vetoed that idea. "People will want to pay tribute, Mom. We'll get through it together."

She hadn't been convinced. Perhaps her fatigue from the constancy of the job bestowed upon her warped her sense of sharing. Perhaps she just needed to not think about it.

Then things started to change in the six weeks that preceded his death. As she came to terms with the inevitability of his passing and with hosting a tribute, she thought about those she wanted to participate. Her spiritual community had already shown such willingness to help over the years, she knew she could count on them for help. She turned to her good friend who readily accepted the task of helping her organize the event. It was premature, yes, but she really didn't know how she would feel after his passing, knowing instinctively that he wasn't going to go easily. Better to be somewhat prepared because it would be a long and exhausting final chapter.

When she thought about eulogists, she had a few names of good men who had known Michael through various stages of his life. She would approach them. She had never done any confident public speaking in her life but in her heart she knew she must be the one to deliver the main eulogy. Oddly, she felt no fear.

When the day finally arrived, she stood with her grieving children and their partners to welcome the arriving guests. As she fingered his rings on a chain around her neck, she still felt none of the panic that was so familiar to her from the past. She had been the girl in school who would shake and redden violently when she considered merely asking a question in class. At times she felt as though nothing had changed in all the intervening years.

Over the past few years of his overwhelming care needs, she had developed a strategy of never looking beyond the moment they were in. Sure she'd have to plan a few things ahead of time, but, after so many calamities that had brought about so many cancellations, she had learned never to bank on anything...ever. She easily fell into the same strategy for facing the funeral. Stay in the moment. Don't worry about the future. 

So as she stepped up to the podium, she realized a small miracle had occurred. She still felt no fear. None. How could that be possible? She took a breath, looked at the large crowd before her, then launched into what felt like the most natural thing in the world. She smiled to herself. Thanks, Michael:

This has been a long road, folks, and here we are today to say goodbye to Michael. Thank you for joining us.

Many of you before me today have stood with us offering your loving support over the years and there are many more who could not be with us. I made a list of all those who gave so much physical and moral support but the list was so long I’d be here all day reading those names. Suffice it to say we have been well loved and well looked after.

I therefore send out my humble gratitude to my community, my dear friends, the amazing Quebec health care team that made caring for Michael at home a possibility and, of course, my wonderful family. You have enriched our lives.

But there is one person I must single out without whom I could not have done my job. Francine C. has been Michael’s caregiver for over three years, stepping in for me so ably and lovingly when I needed her, caring for Michael primarily but also for me with her calm good cheer. Thank  you, my dear. May we now continue a friendship born out of this partnership.

Michael was a most loving husband, father, son, uncle, brother and friend. He was a hard working and loyal civil servant with the Federal government for 34 years, earning him the 2002 Queen’s 50^th Jubilee medal for dedicated service to his country.

Most of his career was spent with National Defence as a mechanical engineer. In his early years as a university student he spent several summers in the wilderness of Western Canada, working as a geologist.

Leaving nervous parents behind in Ottawa one summer, he hitchhiked across the country and landed in Jasper where he spent the season in the kitchen of the Jasper Park Lodge. He was long-haired and wild looking, judging from the photos I’ve seen of him from that time.  

As an enthusiastic and capable participant in many sports, Michael excelled as a hockey goalie and a soccer player. I am told he still holds the record for the most goals scored in a season of Chelsea Old-timers’ soccer. In fact the Michael Torontow award was established for “spirit, perseverance and dedication to Chelsea Soccer” of which Michael was the recipient twice during his many years of playing the game.  He won many other sports awards during his life as an athlete, including the Best Goalie award in a local Old-timers’ hockey league. His wry comment on receiving that award was: “What does that say about the league when an Old Fart with Parkinson’s Disease wins best goalie?”

Michael coached soccer to many children, including most of our own. He was well known for his skill and gentleness as a coach. Sports were his passion. In fact, I believe he thought about sports more than almost anything else. On his deathbed one morning he had a moment of lucidity. He looked at me earnestly and said, “It’s almost over.” Thinking this was finally the moment to talk to him about what he was facing, I gripped his hand, looked him in the eyes and said, "You’re right. How are you feeling about that?" His response: “Just as soon as Emily scores that goal.”  Oh.

His punning skill knew no bounds and was affectionately dubbed “Dad humour” by his children: When asked by an offspring one day “Did so-and-so turn up?” his witty response was, “Yup, she radished too.”

He was always quick to break into an appropriate (or inappropriate) song from his vast repertoire of popular music. The innocuous word “pickle” could never be uttered in our house without  Dad breaking into Arlo Guthrie’s “I don’t wanna pickle, I just wanna ride in my motorsickle.”

We met in the summer of 1979 while I was holidaying in Ottawa from my home in Kingston. I had met my brother Peter after work one Friday afternoon along with a number of his work colleagues. Michael and I barely spoke to each other during that pub visit and subsequent dinner but I can tell you there was much significant eye contact across the table. My friend had sat next to him actually and chatted enthusiastically with him all evening. Later the three of us broke away from the group to go for a coffee. My friend and I happened to be staying in his downtown neighbourhood so we all walked home together that night promising to see each other during the rest of our stay. Afterwards, my friend told me I should check him out, declaring he was such a great guy. This I already instinctively knew but wasn’t letting on a thing to my friend.  I did some quiet research through my brother then took things into my own hands since Michael had dropped the ball and never got in touch – something about important sports commitments no doubt. I contacted him myself when I got back to Kingston. That weekend he visited me, starting our whirlwind romance that saw us married less than a year later. I can still see him climbing out of his car that first time and crossing the street to my house as I watched nervously from my window. Bearded, sunglasses, loose-fitting Indian cotton shirt, faded blue jeans, sandals, tanned, long hair. Devastatingly handsome. The rest is magnificent history. I take full credit, though, for making sure things got going in the first place.

Michael was always quietly supportive of every interest and commitment in my life. About twenty years ago I joined the Baha’i Faith, which ranks with my children and my marriage as one of the most important aspects of my life. Michael never seemed attracted to the Faith himself but he stood by me in that decision and attended many community events throughout the years. He was a staunch defender of the Faith to anyone who questioned him about it. Four years ago Michael’s battle with Parkinson’s disease affected his mental health very violently. Suddenly beset with extreme psychosis and anxiety, he was overcome. It took a long time for the doctors to help him pharmaceutically with his troubles so the only tool I had at the time to help him was prayer. Together we chanted prayers hour after hour until he was calmed. This was a practice we kept up together until the end and it was the recognition of the calming power of prayer that led him to declare that he too wanted to become a Baha’i about three years ago.  It was one of the most joyous moments of our time together.

I will sorely miss my husband and best friend of 34 years.  He struggled with Parkinson’s Disease for twenty years, nearly two-thirds of our lives together and almost one-third of his own life. His care in the final years was fulltime and onerous but I am grateful we were able to keep him at home until the end. It was a privilege.

He was afflicted with a disease that sapped nearly everything out of him, everything, that is, but his courage, grace and courtesy, which remained untouched to the end. He was truly a gentle man…a true gentleman.

Please join us as we sing the prayer that meant so much to him and helped him through some very dark times.

Two of her friends led the congregation in a chant of ninety-five Allah-u-Abha's. With her eyes firmly shut she sang as best she could, breaking into frequent wracking sobs. A few reported to her afterwards the lights had mysteriously dimmed during the prayer. 

*Photo of Michael Torontow taken by Claire Verney, circa 1981

The Other Shore

She slowly dipped her body into the frigid waters of the Gatineau River. Her hardier friend beat her to it and paddled lazily nearby. The two women chatted comfortably about the momentous events of the past week. A husband buried. A family bereft.

As her legs and body cooled, then chilled, she announced she would swim across the bay before she became numb. A hundred meters or slightly more, not far. It is a familiar swim that she has been repeating for years over to the other shore. She used to set out very early each morning before sickness made it impossible for her to leave him alone. She had had to adjust her swim time to suit the caregiver's timetable. No more six a.m. dips.

But that early hour had held a mystical quality. The eastern bank was always still in deep shadow. The dogs would prowl the shoreline and complain to her as she swam, urging her to come back, afraid she might abandon them. As she pushed away from the shore, there might be a curling mist rising in the new day or the water might be very choppy on a windy morning, making her more focused and careful to regulate her breathing as she battled the waves. 

There was always something magical to her about the other shore where her feet would grope for the shallow rocks. She would stop and turn, face east, and offer praise and gratitude, in the dawn light, for strength of body and the grace she'd been granted.

The return swim was always to the symphony of barking dogs but she willed herself to chant her prayer through her breathing, ignoring them while she could, eyes firmly shut, sunlight leaking through her lids. Tails wagged; sticks were retrieved as she pulled herself out of the water onto the rocky shore. She always felt restored and able to face whatever the day might bring.

Today, there were no such worries. A husband was gone. The dogs had been left behind at home, their walk earlier in the day. Her friend had summoned her outside now that she was unfettered and able to leave her house any time she pleases. An alien luxury. The swim across the bay was through calm waters, the air still and silent in the summer heat. As she approached the shore she caught sight of a shape ahead. Tall, statuesque, a picture of grace. The magnificent blue heron made eye contact, barely two meters away from her. She wanted to shout to her friend left behind but didn't want to break the spell. It felt as though he was waiting for her alone. She was entranced and awed and waited for him to make a move. After several minutes of complete stillness, he moved away slowly from her into the trees and disappeared.

Later, after her return to the other side and her excited account of her experience, they watched him take flight, his vast wingspan carrying him away from them to a distant bank.