WRITING ON THE INSIDE OF MY EYELIDS
A BIOGRAPHICAL INTRODUCTION
Patrick died January 11, 2004 at the age of forty-five from the effects of multiple sclerosis (MS). I never thought the day would come when I would be enormously proud of him because he was disabled. Like most mothers I reveled in the sight of my son growing up handsome, strong, enthusiastic and self-confident. For a long time after MS struck him I would think of how he used to be. I would picture him energetically striding down the street and me, trying to keep up with him, matching my two steps to his one, how he had been preparing himself so energetically for a successful career in theatre, and of what great fun he was to be around. Or, remembering my loss of his first father, Bill, I would try to steel myself for when Patrick would no longer be with us. I would try to picture how I could tolerate losing him. It was years before I began to appreciate the new man Patrick was becoming.
Now as I reflect on him, in the closing years of my own life, I realize how well he has prepared me for whatever lies ahead, for as he used to say with a twinkle in his eye, "there are only two kinds of people - the disabled and the not yet disabled".
Patrick became a wheel-chair user after he lost the use of his legs. Soon he had so little vision that he was legally blind. His eyes were so sensitive to light that most of the time he had to wear dark wrap-around sunglasses to ward off the headaches to which he was prone. MS brought with it loss of bladder and bowel control, but even these symptoms were not as hard to bear as the fatigue that continually plagued him. By his last three years Patrick could neither feed him, nor turn his body in bed. Despite all this, he never let himself be defined by his MS. With what strength he had, he was determined to be an interesting and supportive partner to Deborah, a fun-loving and caring father to Rebecca and Cailum, and a productive policy analyst and advocate for the disabled. In his last five years Patrick turned this same determination to creative writing.
Earlier, MS had caused Patrick to take a detour in his life. He started out in theatre, and his yearning for the creative arts never left him. As a student and young man he had tried writing plays and short stories; he had always loved to dabble in poetry. It was, then, quite natural to him to take up writing seriously when, at forty, he retired from the paid work force. During those last five years, despite his near blindness and losing the use of his arms and hands, he completed four short stories, seventeen poems and a lengthy poetic fantasy, as well as a number of essays and memoirs. He taped a half dozen children’s stories and wrote a series of letters to his children. Several other short stories remain incomplete. During that time Patrick kept a journal with 172 entries that recorded his serious attempts to write, the endless frustrations of mastering his computer, his reflections on people, radio, television, politics, his moments of elation and his times of agony. His greatest ambition was to have some of his work published as a legacy to his children.
And so I am prompted to put together his book. It is not only an attempt to deal with my own grief. Patrick wanted to connect with people. He loved to tell stories, to make people laugh and cry. He loved an audience and he was a great performer. I want the public in on the story of what he was like, what he did and how he did it.
I remember one evening in Halifax years ago, at the Buskers’ Festival a young man high atop a unicycle doing impossible stunts kept calling out, "Look at me Ma! Look at me!" He grabbed the audience’s attention. We laughed as we recognized the little kid in each of us wanting to show off. Like the acrobatic busker I put his book together wanting to show off Patrick. His feats of daring-do were as extraordinary as the acrobat atop his unicycle I want to be his "circus barker" and say, "Hey folks! Look at him! Look at Patrick!"
I want the reader to see what Patrick accomplished in five years of struggle against nearly impossible odds. As a former actor he already knew what it was like to be on the line when you were performing. A fellow artist friend, Tom Stroud, felt that Patrick’s whole life was spent living on the edge, not knowing precisely when he was going to die but, very conscious that his life was foreshortened, and living in the tension of that time. As Tom witnessed Patrick’s body deteriorating he felt that the more Patrick declined the more he became himself.
No, for me it’s not enough to leave his writings only for his children and his immediate family. Patrick wanted to connect with others, to show us what’s possible in situations of near impossibility. My own grief over his death has evolved into the desire to write about his life, particularly about his last five years when he truly was living on the edge. His was a great performance.
Even more, I want readers to be reminded of the potential in disabled persons like Patrick that goes unrecognized, is often not encouraged and sometimes never even developed. Patrick never lost a sense of gratitude for his good fortune in being able to write and for the support he received. He was conscious that, among disabled persons, he was privileged.
***
Patrick was born March 17, 1958, into a family of six children whose parents were social workers. He was our fourth, proceeded by three sisters and followed by his brother and a younger sister. His eldest sister, four and a half year old Karen, went up and down our street in North Vancouver, telling all the neighbors that she had a new baby brother whose name was "Saint Patrick". I’m not sure about the "Saint," but in later years I thought of him fondly as our leprechaun.
He was a sunny happy child, easy to raise and even tempered. I can still see him lying on a blanket at a family picnic in Stanley Park, a fat and cuddly three month old surrounded by his sisters, three laughing jumping little girls; a two year old pushing his little red wheel barrow, following at the heels of his dad in the back yard in Vancouver; a five year old skipping stones out across the water on family camping trips, calling out to his dad to see how far he could throw.
Tragedy struck when he was seven. His dad, Bill Kellerman, died suddenly of a heart attack. After this terrible loss, Patrick began to have wild temper tantrums. He would lie on the floor like a two year old with arms and legs flailing whenever he felt very frustrated. Over the years he learned to master these storms but he could show a fierce temper on occasion. Patrick became my passionate son.
His younger brother, Robert, was his favorite wrestling partner and his sisters acted as ‘the petticoat government". To the girls he was "loud and in your face". He certainly generated excitement wherever he went. And his instinct for mischief never waned. Patrick was sort of a cross between ‘Denis the Menace’ and Calvin in "Calvin and Hobbes’ in the comics. In later years he even saw himself reflected in Calvin and drew from the character in his children’s stories.
We had numerous tales about Patrick to tell his own kids, which we gathered up and recorded in a special book for them after he died.
There was the time with his friends when he surreptitiously took Karen’s bra and nailed it to the garage door with a sign announcing the owner…and the time he hid out on a freezing winter day in a snow bank on the edge of the Bayview Shopping Mall in Toronto, along with his younger brother Robert, hiding from their mother whom they suddenly spotted, shopping, as they played hookey from Saturday morning Religion class…the time he played sick to get out of going to Mass and the family nearly ran him down on his bike as they drove home… the time he brought a box of chocolates to the mother of a friend of his because she was "the only one that would put up with me!"…there was the time he set the sheet on fire from a lamp bulb he was reading by, under the blankets in bed late at night…and the time he got put off the school bus for sassing the bus driver…then the time he got up too much speed on a novice cross country run and whizzed into a tree smashing a brand new cross country ski. .. even at university he tried unsuccessfully to persuade his classmates to play a prank, holding open the doors of the brand new Dalplex so that the pressurized air would escape and the special roof suspended over the gym would collapse!
Patrick was an independent -minded teenager, never a follower but always ready to entertain and never lacking in ideas. He grew up to be hardly an inconspicuous young man with his penchant for rakish hats, his booming voice, blazing blue eyes and exuberant gestures. Some folks even saw him as outlandish, but his proud mother only saw him as enthusiastic.
When Patrick was fifteen I married Pat Kerans and the family moved to Halifax. Patrick was none too happy to be leaving behind his Ottawa friends at Lisgar Collegiate. At first, school in Halifax was ho hum, but a few months into the school year at St Pat’s, he came home enthusiastically reporting that Neptune Theatre was starting a theater program for students. Being good with his hands, Patrick joined the stage crew but before long he was trying out for acting parts. Given his loud voice and uninhibited personality he was a natural. That year was the origin of Patrick’s passion for theatre.
Theatre totally absorbed his high school life. Two years later saw him in the lead role in "Man and Superman" at St. Mary’s University Drama club. After spending the next year in Calgary exploring the work world, he came back to Halifax to take his BA in Theatre Arts at Dalhousie where he studied playwriting as well as acting and directing,
Summertimes were the most exciting. He obtained a student grant to start up a theatre for children, christening his venture "Bubblegum Theatre". Patrick wrote the script, recruited a half dozen of his classmates, got together some crazy props and costumes that emerged out of a big trunk on stage, and proceeded to tour around the Halifax region during the holidays and to put on outdoor kids theatre. It was a great success. With his booming voice you could hear him two blocks away without benefit of any loudspeaker system at all.
The following year he obtained an educational grant from the Nova Scotia province to fund another troupe touring elementary schools around the province in the springtime, and summer camps during the summer. He wrote plays about conserving electricity and starred as "Captain Socket the Power Pirate". That was the start of his lifetime of story telling to children.
When it came to kids, Patrick was a complete ham. He loved to mime. Often he would start to mug or imitate some little kid on the bus and invariably the child would beam and respond. Any children around home always wanted to play with him, or get him to tell them a story. Needless to say, he acted out every bit of the yarns he spun.
After Patrick and Deborah married they would often return for summer holidays to visit us on Caribou Island at our summer home in Nova Scotia, where they joined Patrick’s siblings and their families on holidays. Sarah Angus, Patrick’s eldest niece, wrote a poem the summer she was sixteen about the fascination her Uncle Patrick held for her and for her young cousins as they surrounded him to hear his stories.
Early Summer Evenings
On early summer evenings
My cousins and I
Would come flocking to him after supper
Looking for a story.
As the adults clattered dishes in the background
My wonderful Uncle Patrick
would have us enchanted
with wild stories
of dinosaurs and giant tomatoes,
far away from our cottage on
the shores of Nova Scotia.
Sitting in his wheelchair,
he’d suddenly come alive,
his red chapped hands,
darting back and forth.
His loud booming voice
Would grab our attention.
Pulling us closer in wonder.
His piercing blue eyes were wide but never quite focusing.
The spell had been cast
and we hovered there
excited and laughing,
gazes of amazement
radiating off our faces.
Sitting on the rough wooden deck
Littered with red sand and leaves,
It didn’t matter that the stories were only make believe;
Uncle Patrick could make them real.
After his own children Rebecca and Cailum were born, Patrick’s greatest delight was to entertain them. Among the many tales were his bedtime stories about "The Great Kazoo" In his last year at home, Deborah persuaded him to tape record some of his Great Kazoo stories. Patrick’s forte were his skillful sound effects. Even if his voice was no longer as strong, his sense of the outrageous had not dimmed. In tender contrast to his wild stories he created a hauntingly sweet sound playing his mouth organ between the stories. For a long time after Patrick left us, his recorded stories continued to put Rebecca and Cailum to sleep.
In the family memento for the children, Patrick’s uncle, Douglas Roche, wrote of him:
You could see him, with his stories and poems and humour, teaching his nieces and nephews as well as his own children. They seemed to revere him, as if his touch would magically transport them into another world. I could be wrong, but I don’t think this next generation saw him as a sick man but a special man who could, without their even thinking about it, brighten their lives.
After university Patrick spent nearly five years in Toronto working at Malabar’s costume rentals where he earned a pittance but found life very exciting. He felt he was living in the theatre world. After work hours he took part in amateur and semi-professional productions. Perhaps the high point of his acting career was his lead role in "Our Town," a production with amateurs and professionals. I was somewhat concerned that he seemed in no hurry to get ahead in the world but I knew he was enjoying life; besides, I loved having him take me to plays and to opera whenever I went to Toronto.
He found time to join the Performing Artists for Nuclear Disarmament (PAND). As a peace activist myself, I was a proud mom when he was delegated to sit on the Mayor’s Committee for Peace and helped to raise funds through artistic productions. This is what made him proudest of those years.
Eventually Patrick decided he no longer wanted to be a poor artist and that the way to stay in theatre and not be poverty-stricken was to take an MBA in theatre administration. However, he had only just started his studies at York University when he was diagnosed with MS and had to drop out.
***
It was while riding his bicycle daily back and forth to work in Toronto at twenty-four that Patrick first experienced symptoms of what, two years later, after numerous examinations from various doctors, was diagnosed as MS. The only one of the family to have 20/20 vision, Patrick began to notice how fuzzy street signs were becoming. Then he started having trouble keeping his balance on his bike and began to fall off it. Over the next few years he had to substitute for his bike first a cane, then two canes, then crutches, and then an electric scooter and a manual wheel chair.
When Patrick got the diagnosis in late October of 1984 he was crushed. Pat and I persuaded him to come home to Halifax for a month’s holiday. We witnessed his sudden unsteady gait and even inability to walk when his energy abandoned him. With his enthusiasm gone, there was only confusion in its wake. He did not know what he was going to do with himself. I tried to focus on how we could help him. It seemed I always concentrated on that, rather than on his disease. I suppose it was my form of denial. I would learn slowly in the years ahead to acknowledge his condition and to take my leads from him about how he might be helped.
With Christmas coming, he agreed to accompany Pat and me and our youngest daughter Lyn, to visit our two daughters and their families in Ottawa. That was a turning point for Patrick. His sisters Maureen and Joanne introduced him to Deborah Stienstra, a close friend of theirs, who became the new light in his life. Deborah, a bright young woman of incredible energy, both challenged and supported him. He grew more and more interested in how she read the world. Her field of political science attracted him. He took a course at Carleton to qualify for further study. A year later they decided to marry and return to York University, Deborah to complete her Ph.D. and Patrick to obtain an M.A.
When he was first diagnosed with MS it was a year or more before he would go to the Ontario Vocational Rehabilitation services to see if he might qualify for their services. He did, and they were enormously helpful in financing his return to university as well as in providing him with an array of technologies to help him to read and to get around. Our family too were able to supplement their income. Bill’s death had taught us that in misfortune families have to stick together. Patrick’s brother and sisters as well as Pat and I offered assistance to the young couple.
Even though Patrick lost his ability to walk within two years of his diagnosis, for a long time he remained basically strong and healthy. He operated his wheel chair with speed and alacrity and could manage to swing and hop from it onto other chairs, awkwardly but nonetheless effectively. At Caribou he claimed his old job of climbing aboard the grass cutter to mow the field. He was a great swimmer and, though his legs no longer worked, he could swim the length of a community swimming pool under water before surfacing. Once at Caribou, when he could no longer transfer himself easily, his sibs hoisted him into a wheelbarrow, ran him down the path to the shore and dumped him unceremoniously into the sea at high tide to frolic with them.
It had not been hard to keep Patrick at the center of our affection. In many ways he was the linchpin that held us together and gave meaning and purpose to our larger family. We remained very aware of his health and the progression of his illness. But just as important to us was what Patrick was doing, what he was thinking and was involved in and the latest news of his family that he would report with such vibrancy. Patrick could communicate so easily his affection for us all.
Our family remained close through visits back and forth to Toronto, Ottawa, Penticton, Winnipeg, Caribou Island and Halifax. Phone calls were our lifeline. Caregivers were hired to look after Patrick’s personal needs when he traveled out of Manitoba to visit us. We dug a little deeper to help Patrick and Deborah to enlarge their little house in Winnipeg and later to add a porch when he could no longer wheel himself outdoors easily. As his mobility was reduced and it was harder for him to travel, we visited him more and more frequently. When Patrick could no longer come to Caribou, during the summer holidays, I exchanged places with Deborah. While I had some precious time with him alone, she would bring the children to Caribou.
Two of Deborah’s siblings, Carolyn and Michael Stienstra, settled in Winnipeg in the same neighborhood as Patrick and Deborah. Carolyn lived with them her first year out of university and Patrick became very fond of her and served as a "big brother" freely dispensing advice and urging her to explore life. Later when Carolyn married Art they moved into the same neighborhood. Carolyn recalled how he used to write poems for her and how he told her she was his inspiration for Susie Durkins in his "Great Kazoo" stories. Michael came to study law with his wife Carrie and their little son Andrew. They were always immensely helpful to Deborah and Patrick’s struggling household, whether for babysitting, household repairs, lawn mowing or family celebrations and outings.
Like Patrick, Deborah came from a family of six children. Whenever her parents or other siblings came to Winnipeg there would be gatherings of their extended clan. Art saw Patrick as the "trickster" in their midst, always full of fun and mischief with his stories, whimsical wit and Irish ways. He was the life of their reunions.
***
Patrick was slow to situate himself in the disability community. It was a gradual process, beginning with his years at York University with Deborah. She remembered a conversation she had with him one day when they went on a long walk across the campus with him riding his electric scooter. At first he talked about himself as just a regular guy who happened to have MS, but by the end of their reflection together he began to consider himself as something else –a permanently disabled person who, because of his limitations, would have to struggle as part of a community of disabled persons to have their dignity and rights respected. Patrick learned early on that to lead an ordinary life he would have to act as an advocate for the supports he needed. Leading an ordinary life became his personal goal but he also learned that to have that kind of life he had to do it as part of the disability community.
Once he recognized his own resistance to acknowledging the effects of MS Patrick also understood that advocating on his own behalf was not the whole story. He knew that public policies and practices needed to be put in place to protect the rights of all disabled persons.
As a student at York University he wrote a letter to the administration complaining about the poor accessibility of his bathroom in his student apartment. The president replied that he would have proper adjustments made. Patrick wrote right back asking whether similar improvements would be made for all students in wheel chairs. He made his point, and handicapped students’ quarters were made properly accessible. When he went looking for technical visual help for himself at the library, he discovered from talking to the staff that there was a Kurtzweiler voice-activated computer program that was still packed away in a storeroom. He asked to see it and spent many hours working with the instructions until he could use it. After that he made it his business to teach other visually impaired students how to use this program to help them as well. In 1988 he became a founding member of ABLE, an advocacy group for York students with disabilities, and he assisted in policy development and staff awareness and training. One faculty member recalled how effective he was in this role.
In his graduate student days sometimes Patrick had enough vision that he seemed to ride his scooter with insouciance around York’s buildings and campus but he could only read slowly with an array of devices to magnify the print. Headaches and sensitivity to light followed. For a while, looking like a pirate, he wore a patch over one eye. A number of student volunteers spent many hours reading to him which made his life much easier.
Deborah and Patrick’s families came together in Toronto for a glorious celebration of their simultaneous graduations from York University. There were over two thousand students granted degrees that day but Deborah and Patrick stole the show as Deborah pushed Patrick’s wheel chair up the ramp for him to receive his degree amid great applause and cheers. Every university faculty member on the podium rose to greet him.
After graduation they returned to Winnipeg where Deborah had obtained a teaching position the previous year at the University of Winnipeg. Patrick spent their first year there looking for employment. Initially he did not even think of looking in the disability field. However, he was quite prepared to use the services of an employment agency for disabled persons called Reaching Employment through Equality, and to take their Job Search Workshop. The people in this organization so impressed him that he later devoted several years of volunteer work to it.
He was personally sensitized to how hard it is for disabled persons to find jobs. Patrick had focused on international finance in his master’s thesis and he thought he stood a good chance of getting one of a couple of rare jobs in this field. He came home from each of the interviews convinced that employers never got beyond seeing his wheelchair.
Two men in the disability movement had an enormous influence on Patrick. The first was Allan Simpson whom he met on the Board of Reaching Equality. Allan was the man behind the 1967 Pan Am Disability Games who went on to become one of the most effective persons advancing the interests of people with disabilities in Canada.
The second was Henry Enns an immensely creative man who hired Patrick in January 1993 to be his executive assistant at Disabled Persons International (DPI). Each of these men was also a wheel chair user and each was a giant for over thirty years in the disability movement. From being around them, Patrick could see how they led full lives despite their disabilities. Both Allan and Henry predeceased Patrick: Allan died in 1998, and Henry in 2002, each at the age of fifty-nine. Patrick was bereft at their loss.
Though he was inspired by them, he did not see himself in heroic proportions. To Patrick, Allan and Henry were living proof that one could be happy and have a rewarding life, even while having to overcome physical obstacles. Like them, Patrick’s political philosophy was one of inclusion, individual rights and responsibility. His personal goal was to live his life as authentically as possible.
Patrick believed this so strongly that he asked us to read this entry from his journal at his funeral:
I spent the day reorganizing files and reading the 23nd chapter of Moby Dick. The chapter is titled "The Lee Shore" and is a description of why a man called Bulkington would choose to return quickly to the sea again following a long sea voyage. In this short passage, Melville describes Bulkington by describing his reasons for going to sea. He does not describe the physical characteristics of the man but rather an idea that the man embodies. The metaphor of the ship at peril from the wilds of the open ocean is used to describe human longing for something beyond comfort. Melville gives flesh to an idea of struggle and choice and endeavor and opposition. Melville applauds Bulkington and Bulkington's endeavor. It is a brilliant description and a clever means of making the transition, from the ship leaving harbor and the open seas.
Last night while watching television, I saw myself reflected in society's mirror. I watched a fairly sensitive portrayal of a MS mainstay and even there I did not enjoy what I saw. I am now a stereotype. I am the "MS guy." Frustrating but inevitable. Allan and Henry have made careers from this stereotype and the super crip misconception. I didn't and don't want to do that. I am attempting to be something beyond a stereotype of myself. Like Bulkington, I prefer the open seas of just attempting to be myself.
Henry Enns was a key figure in launching Disabled Persons International at an international meeting in Singapore in 1981. Henry was a visionary who already as a social work student had sketched out the workings of an international organization of disabled persons that would give them a voice of their own. In 1984 Henry became its executive director with its office in Winnipeg. It was set up to connect disabled people’s organizations in various regions of the world to information and to funding. When Patrick joined its staff, DPI was at its strongest. The small staff of twelve dealt with 130 member organizations all over the world. Henry traveled frequently throughout Canada and to other countries. A charismatic man, he had ready access to important government figures. Patrick found Henry, though inspiring, to be a bit of a whirlwind. Because of his penchant to take advantage of every emerging opportunity, he shifted priorities without notice.
As a non-government organization, DPI became a voice for the disabled at the United Nations and dealt with issues of human rights, independent living, employment, education, prevention and transportation as well as the broader issues of food imbalance, poverty and racism.
Patrick helped to organize the DPI World Council Meetings of 1994, 1995 and 1996 and took part in the campaign to ban landmines, which won the Nobel Peace Prize. He also attended DPI’s world council meeting in Washington and assisted in negotiating the language for the meetings on the Inter-American Declaration on the Rights of People with Disabilities. When Henry left DPI in 1996 to establish the Canadian Centre on Disability Studies, Patrick assisted in managing the transition between executive directors.
Finally, with his own strength and eyesight deserting him, he resigned in 1998. Staff persons had tender remembrances of how, despite a sometimes gruff manner, he was always very attentive to his coworkers and showed concern for their families. Sometimes he would write poems to them for special occasions and at times show them poems he wrote for Deborah. They recall his humor, his dapper appearance, his earrings and his hats.
Patrick was also very involved as a volunteer. Before he found work with DPI he went to work for Choices, a coalition of groups lobbying for social justice. Regularly, once a week at 7 a.m., he would roll downtown in his wheel chair to attend their breakfast meetings, the only visibly disabled person in the organization. There, he was chiefly involved in the fight against the privatization of home care under Manitoba’s Conservative Government. Patrick supported government services and not American-style private health services run for profit. He did not want to see home care turned into a business. By 1998 the coalition’s lobbying was successful when the Manitoba Government reversed its policy of privatizing home care.
In 2000, when the Federal NDP launched their national home care platform, they did it from Winnipeg. Party leader Alexa McDonough went to Patrick’s home to announce to the TV and press crews, crowded into their living room, that private home-care companies would have no role in a national home-care program.
Patrick was never afraid of using himself as a "poster boy" to advocate for proper home care services for the disabled. One Sunday morning, after he had waited for the second weekend in a row for over three hours for a scheduled home care attendant to come, he called the press. He told them that as a paraplegic he required a home care attendant every four hours and that his wife could not lift him. The resulting picture in the next morning’s Winnipeg Free Press of him lying in bed, uncared for, caused a flurry of meetings right up to the Minister of Health. In calling the press Patrick knew exactly what he was doing. The home care services were understaffed and he knew how to put pressure on the government when more funding was needed. He knew he could speak out as a privileged person who was intelligent, good looking, white, male and well educated. Within the community of disabled persons he was indeed privileged and he wanted to use that privilege for the benefit of other disabled persons. Smirking, he would say to Deborah, "I’s a pretty crip!"
Patrick also knew first hand how important employment is. His job may not have been without its frustrations but he was delighted to be going off to work every morning.
He knew how fortunate he was and how hard it is for most disabled persons to find jobs. This is why, even with his limited energy and an almost full time job at DPI and a young family at home, he still made time to work as a volunteer from 1993 to 1997, going to monthly board meetings and twice-monthly committee meetings of Reaching Employment through Equality Services. He served on committees searching for alternatives to government funding, researching and developing services to sell on the open market to fund their non-profit agency’s work. In 1995 he became the chair of the Service Coordination Committee, opposing the Government’s attempts to unify services to disabled persons, which would have denied them choices. In1996, as Vice President, he devoted his talents to writing cogent and persuasive letters to ensure that their organization got sufficient funding from the Province of Manitoba.
Debbie Bean, their executive director, saw Patrick as a valuable member of their board because he had himself used the service, knew what it was about and had lots of skills to bring to them. She appreciated his wit, how he could poke fun at politicians, his letter writing skills and his keen mind. Patrick provided good balance on a somewhat conservative board. With his sense of humor he lightened moments that got too intense. When people were starting to get ruffled he had a way of saying things to make them laugh and relieve the tension.
By 1997 Patrick’s strength was waning and his very limited eyesight was diminishing and so he resigned from the Board. He then continued work on behalf of disabled persons from home by combining his efforts with those of Deborah.
When Patrick and Deborah first moved to Winnipeg they chose to go their separate ways as community activists, wisely recognizing that each was better on their own turf. As Patrick’s strength receded, however, their earlier practice of working separately no longer applied. Deborah shifted gradually from women’s international relations to research about disability. Together they participated in one project on how the Standard Rules on Disability, adopted in 1993 by the UN, were being applied in Canada. They conducted a two-year study on how the Canadian Government had implemented its commitment in three particular areas – education, employment and income maintenance. They compiled the key promises made by the government and distributed them to disability organizations in each of the provinces and territories, and then followed up to see what each jurisdiction had done. Patrick could make ready contacts with a wide network of disability organizations from his time with DPI. He worked from home for a year, together with a research assistant they hired. Their findings "Taking Action on the UN Standard Rules on Disability," were published and presented by them to conferences on disability research, one in Minneapolis and one in Halifax.
Deborah went on to work in the field of disability studies; in 2000 she was seconded from the University of Winnipeg to become the Royal Bank Research Chair and she later become the director of the new graduate program in Disability Studies at the University of Manitoba. Patrick took great pride in her work.
For Patrick the personal was political but the political also led to his personal convictions and choices. Cases like the death of Tracey Latimer made him very protective of the rights of disabled persons. Patrick rethought his own position on assisted suicide because of Allan Simpson, who went to Ottawa to vigorously oppose a public attitude that people with disabilities should be "helped" to end their lives. Based on his personal experience, Allan argued that those working in the health care system often think that people with disabilities experience a poor quality of life, and so are likely to encourage patients to accept an easy death, rather aggressively pursue life. From listening to the discussions within the disability community and from his reflection on the Latimer tragedy, Patrick rejected any former thoughts or plans for assisted suicide which he had for himself. Yet he was never judgmental of the decisions made by disabled persons for themselves.
During his twenty years as a disabled person Patrick shifted from an individual focus to a focus on communities and then to a policy focus. He came to realize that, beyond a person’s physical limitations, there are social obstacles that prevent her from leading a normal life. Society has to change to get rid of those obstacles, and such changes need to be enshrined as human rights. During this process, as he went from the personal to the political, he had two of this country’s best teachers, Henry and Allan. They helped him shape his view of disability - and Deborah shared his understanding. He poured so much passion into his work because, as a disabled person himself, he was aware of how significant are the barriers to living an ordinary life, and how much extra effort it takes to do so.
What mattered to Deborah and Patrick was that they lives should be as "normal as possible". They loved kids and wanted to have them. A colorful jungle gym on their front lawn announced to the neighborhood that children were welcome there. Patrick spent many hours sitting on the porch enjoying them at play and chatting with neighbors. He loved taking himself off to the big Winnipeg downtown mall to get his haircut or to do a bit of shopping. He really enjoyed being in a crowd of people or watching the passing parade.
Deborah was the risk-taker organizing their holiday trips back to Nova Scotia, to Kananaskis, Ottawa, Vancouver and Lake Winnipeg. As his MS progressed Patrick grew more reticent about traveling and the last few years I spent a couple of weeks in Winnipeg in summertime while Deborah and the children went to Halifax and to Caribou. In the cool of the evening we would stroll over to a park overlooking the Red River. Our long conversations and uninterrupted times were precious.
Sometimes when sitting in his wheel chair at home in Winnipeg, Patrick would tell me how frustrated he was not to be able to fix things around the house. Still he was able to participate for a long time in household chores. For fifteen years he was able to do his share of cooking, washing dishes, and doing the laundry. The kitchen was organized so that he could reach what he needed, and an elevator allowed him to get to the washer and dryer in the basement. Patrick was great at transporting laundry, groceries and children via his wheel chair.
Their family outings provided quite a sight to the neighbors as they strolled to the park with a child in Patrick’s lap and Deborah pushing the wheel chair. When they went somewhere by car Patrick could, with Deborah’s help, transfer himself from his wheelchair onto the front seat by means of a sliding board, and then she would store his chair in the trunk. Although he did regular exercises to maintain his upper body strength, he gradually found it more and more difficult to hoist himself into a standing position. The muscles in his abdomen were weakening and he had to be careful not to lose his upper body balance and slump out of his wheel chair. Every so often he took a dramatic fall forward. In the earlier years whenever this happened he insisted on hoisting himself back into his chair unassisted. Gradually he came to accept what help was necessary. His legs had a tendency to spasm, and for a time he kept them strapped together when he was in his wheelchair.
For a long time Patrick’s arms remained strong. When Rebecca was a baby he had no trouble raising her high above his head to hear her cries of glee. Six years later when Cailum was a baby he had great difficulty trying this. By then he could no longer transfer himself into the car so that family outings became more limited. Patrick would have to be transported by Handi-Transit and he fast became a favorite of their drivers. The dispatchers would banter with him every time he ordered a van.
Wearing diapers became a reality of his life which he never concealed. In later years when the time came that I had occasion to feed him, I used to wonder if he thought I was remembering him as an infant. I quickly put that out of my mind when I saw with what matter-of -factness and dignity Patrick let me feed him. It felt very normal to me.
Patrick’s love and concern for his own included his "community family", his home care workers. They were his surrogate arms and legs. Men like Felix and Jeff, so strong that they could dispense with using the mechanical hoist. Instead they could cradle him in their arms and lift him from bed to wheelchair. Women, like Dianne who prepared his dinners, meticulously following his detailed instructions as though she weren’t long since an experienced cook herself. Care givers who joked with and good naturedly tolerated his little children underfoot, all were invaluable treasures to Patrick and Deborah. And he in turn became a friend and confidante to them. Each day they brought him news of the sports world, news about their families and sometimes even brought their own little children to visit him. Often he would tease his caregivers and on occasion he would listen to their personal troubles which made him silently grateful that his seemed less serious. I have seen him rouse himself from near exhaustion to greet his home care workers cheerfully as they arrived and exchange pleasantries with them.
Patrick made a point of giving his home care workers clear requests and instructions. He may have been exacting, but he always treated his home care staff with great respect and appreciated the pressures they were under. We were all thankful that Patrick and Deborah lived in Manitoba, the province with the best network of homecare services in Canada. Once when Pat and I accompanied the family on a weekend excursion to the country, a short while after we arrived at a cottage a homecare worker appeared at the door to check on Patrick and arrange the schedule for his care.
***
The wheel was coming full circle. Patrick had started out in the arts world and now twenty years later, in 1998, Patrick decided he would write with all the time left to him. By then the MS had progressed so far that he lacked the energy to continue working at the office. For several months he had tried working only in the mornings but gradually this proved too much. Not only was the fatigue a serious drawback, but also frequent urinary tract infections meant he had to be hospitalized for their treatment. If he was going to retire from the paid work force Patrick absolutely had to have a role in life. If he could, he would have been a full time parent but this was impossible. In earlier years Patrick had tried his hand at short story writing and he enjoyed writing poetry. Now at age forty, he resolved to become a full-time writer. Going back to writing was like going back to a long lost love.
I’ve got to write. Otherwise, there will be nothing. No purpose to my existence. There will be little enough purpose even if I were to succeed at writing but without it my life would be meaningless indeed. Well, then, what am I left with? Nothing. Or maybe something smaller but more profound. Maybe it is just the effort, just the work, which makes us what we are. If that is the mark of a human being, it leaves many of us outside the box. Maybe that’s something that needs to be written about – that too many of us are left without purpose, because we lack the mark of the beast. (from Patrick’s Journal, July 26, 2000)
Being home alone during the daytime while Deborah was teaching at the university and Becca in day care and school meant that he had a quiet setting for work. But his day was all too brief: home care workers came five times a day to look after him. His personal care routines were very time consuming.
At 8 a.m. his home care attendant would change, wash and dress him, and transfer him from his bed to his wheel chair by means of a mechanical hoist. Then the attendant would prepare and feed him breakfast, returning briefly later during the morning to check his urine bag. A second worker came by to give him lunch and put him down for an hour’s afternoon rest. The afternoon worker would come back to get him up and settled, again coming by later in the afternoon to empty his urine bag. A third home care worker would arrive around 5 p.m. to prepare his supper and his final home care worker of the day would come to put him to bed around 9 p.m. repeating all his personal care routines. He had to make necessary phone calls related to his home care. He also undertook some after-school childcare for Becca. In fine weather he would often drive his wheel chair over to her school to accompany her home. Days went by quickly with never enough time or energy for his beloved writing.
Theirs was a busy household, all the more so after the birth of Cailum in December of 1999. For several months he did not even keep his journal.
In rare free moments he loved to watch good TV or a film. Eventually he had to give these up because of the eyestrain they caused. Fatigue was his constant companion, and the biggest block to writing. On the other hand, he never ceased to enjoy listening to the CBC radio.
His journal was where he let off steam over the many frustrations he encountered.
And I am awake, and I am asleep. And I am awake, and I am asleep. I am a light bulb, flickering at the touch of my daughter’s fingers. Is this what my disease demands of me? Two hours asleep for every hour awake? No wonder I get no work done. Fatigue becomes the constant of my existence. In the final analysis, sleep is really very boring. Not much to serve as subject for conversation or creative writing. (Jan 12, 2001)
Even when he had summoned the energy to write, the use of his computer itself posed an array of challenges and frustrations despite his years of experience. As his disease progressed he had minimal use of his hands for typing. So he dictated by means of voice-activated computer programs. By means of Zoomtext he could magnify words so large that the screen would only hold four words at a time. Although it was easier to see what he was writing, it was laboriously slow to reread for editing. His new Dragon Dictate program was an improvement. It could both take commands from his voice when he was writing and it could convert his words directly into text from sound. But the computer had to be adjusted to his voice and Patrick had to enunciate very carefully and consistently. Sometimes the results were hilarious, sometimes disastrous. The program was well named, because he was often locked in mortal combat with his Dragon Dictate. It took many hours for him to review and edit his work. To be fair, between Patrick’s ever less mobile hands and a tired voice that grew weaker with fatigue, one had to make allowances for the computer too.
As a solitary writer at home Patrick did not have the benefit of feedback or editing comments from fellow writers or editors. Nor did he have the opportunity of trying out his efforts on a writers’ group of peers or even of a literary friend. All his energy just went into plowing ahead.
My disabilities may require me to write less than a paragraph a day. That’s fine. I am already so addicted to the process that I miss it if I do not write. (Oct 15, 2000)
Patrick also had to struggle with the same issues every writer goes through as he/she determines what to write and how to say it. He searched for a long time looking for his form. His time in theatre made him very aware of the audience. Was his experience with MS worth recording? He thought not. He figured his readers would not be interested in his health. So at first he tried entertaining with fictional story telling. Gradually however, he drew on his own condition as the subject matter for two of his short stories, in his "Letters to Deb" and in several of his fantasies as well as his poetry and his memoirs. Though MS interrupted his writing and made it slower, struggling with the disease deepened his spiritual life and caused his imagination to soar. Patrick’s own condition became his potter’s clay. He lived on the edge, striving to become a writer while trying not to deny his disabilities and nearing death. His writing reflects these tensions as he consciously sought to be authentic.
He left behind a record of his notes, conversations with himself and journal entries about his flights of imagination. Mirroring his foreshortened life Patrick’s writing files contain several incomplete stories, as well as sketches of plots and characters about his "flights of fancy". These sketches contain the beginnings of stories, plot and character outlines. We will never know how these stories end and sometimes even where they were going but he left a testimony of his rich fantasy life.
At times Patrick’s battle to write was overshadowed by the reality of his coming death. He fought depression. There were moments when he feared he would never be able to write again. Fatigue clearly limited his output: his declining health; the exacerbations of Multiple Sclerosis; isolation from the work force; the death of two important figures in his life; and his limitations as a functioning parent were all sorrows which drew him into depression.
All the while, very real windows were closing for him and more and more painful adjustments had to be made. The MS was moving upwards. He lost strength in the muscles in his torso and was less able to hold his body upright. As he progressively lost control over the use of his arms and hands he could no longer run his hand operated wheel chair. Consequently he had to acquire a powerful electric chair that could be kept in a reclining position. While this provided him with a more comfortable position for resting, it seemed to dominate and encase his body. Moreover because it weighed six hundred pounds he could no longer use the elevator which meant he lost access to two thirds of their home.
His downstairs study just off the living room was converted into his bedroom. Now this spacious sunny room became equipped with a hospital bed, a mechanical hoist, and a wardrobe, besides his desk and computer. While his new room was central in the house, he could no longer share a bedroom with Deborah.
The use of his fast-moving electric wheel chair posed another problem too. Baby Cailum was crawling around the house by this time, and when Patrick was in the living room he had to be extremely vigilant when he was in Cailum’s vicinity, for fear of rolling over the baby’s fingers. With Patrick’s minimal sight, the enormous watchfulness this required was an added strain. He even had a back support on his wheel chair removed so that he could more easily look over his shoulder and sense the baby’s presence. Cailum used to want to scramble up onto his "Poppa’s" lap and Patrick wanted to be accessible to him and to be able lift up his little son but that grew more and more difficult for him.
Physical discomforts, cold, heat, the weight of other people’s troubles, child management, family discord all gave him tough times, sometimes unbearably so. Nothing caused him more anguish than his occasional failures as a parent. Patrick adored Rebecca and Cailum but increasingly he found the natural exuberance of the children exhausting, the noise level overwhelming and his efforts at limiting them fruitless. His patience grew thinner and he became more and more anxious either for their safety or over their "naughties". Tensions between himself and the children and between himself and Deborah increased. Some days Deborah, returning from her work, teaching at the University, to care for two young children, felt strung to the limit of her endurance. However Patrick refused to excuse himself just because he had MS. He would not isolate himself from the children by going into his own room and shutting the door. Nevertheless, it seemed the worse his condition, the more effort he mobilized to continue writing. His writing did have therapeutic effects. It helped him to express his grief, even when he masked it in black humor.
Then as he encountered the death of persons he knew, he reacted with the same sadness and resistance that most of us experience as we face the reality of our own demise. But these losses were also acute reminders of the importance of the time left to him. He tried to cope with his own mortality by thinking of all life and death on the planet and the interconnections between life and death. When he was sick in hospitals with close calls, the struggle was very real and he had to fight his way back. When he was better, he was even able to face in a matter of fact way such practical details as planning his own funeral. Once when Deborah and the children were away on a trip and I was with him, he had to be hospitalized for a urinary tract infection. He was delirious with a high temperature and I witnessed first hand how hard it was for him not to give up.
There certainly were times when Patrick was tempted to run away from life. Then he would consciously use his writing to push himself past his black cloud. His journal indicates over and over that he could suddenly switch from worrying about his condition and his inability to care for his own family to imagining characters, a new plot for a story or a new development in a story he was currently working on. Or he would plan some concrete action to break depression’s deadlock.
***
The last fifteen months of Patrick's life were his greatest challenge – and his most remarkable achievement. In late summer of 2003 he was hospitalized with a lengthy bout of pneumonia. It became evident that he needed full time care. He used to choke easily and was in such a weakened condition that he could not always call for help. While twenty-four hour home care was available, for the sake of the kids it was not feasible. The only option was a nursing home. Patrick immediately took hold of this reality and raised no fuss whatsoever. He simply said it was time. None of us wanted to have him separated from his family but we knew it was inevitable. We could never have foretold the disastrous loneliness of separation for him or for the family. One evening I was returning with them in the car from visiting Patrick at the hospital, I heard Cailum's small voice from the back seat protesting, ''But Mommy, I want Papaa to come home with us.'
Their nursing home of choice was Taché Centre because it had a special wing for young adults with Multiple Sclerosis. There, each floor had its own bright sunny dinning room and attractive lounges. On the ground floor there was a cafeteria, a chapel and several services. Outside was a garden with walkways and little nooks with patio furniture where families could gather in the shade on a summer's day. However there was no vacancy when Patrick required placement. He would have to wait for an opening.
In the meantime he was placed in Misericordia, an old center city hospital which had been converted into an interim facility. The appropriate wards for him there were also filled, so that Patrick was placed on a floor of elderly patients, most of whom had dementia. He shared a room with another patient with whom he could have no conversation. Nor could he engage in conversation with anyone in the dining area. Worst of all, Patrick had no access to his computer and his beloved writing which up until now had been his life-line. His painful maladjustment was clear.
We quickly figured out that if he could not use the computer, what he needed were people to take dictation from him. Family members were his scribes when each of us was there, but there were many long hours and days in between visits. Patrick later admitted that he kept his sanity in those months only by writing poems and stories ''on the inside of my eyelids''. A few weeks later he told me that he he was not losing his mind but he felt he was losing his imagination. To me, this spelled disaster. We did two things to avert this catastrophe. I went to see the social worker at Taché to explain the seriousness of Patrick's situation. He agreed to do everything he could to get Patrick admitted to Taché as quickly as possible.
Meanwhile Deborah and I met with Tom Stroud, a faculty member at the University of Winnipeg to discuss the possibility of getting student volunteer scribes. Tom agreed to help and Patrick drew up an ad for himself describing his requirements. With Tom's encouragement, Luc Lu, a young first generation Vietnamese Canadian theatre student responded and came to visit Patrick. With no previous experience, Luc became his faithful weekly scribe, keeping immaculate longhand dictation in a special book. During his remaining months, Patrick dictated memoirs, essays, fantasy stories and poems to Luc and occasionally to Jody, another dear young friend and to me. As Patrick and Luc came to know each other they talked about Luc's studies at the university and Patrick told him stories about his days as a theatre student at Dal and later at York.
In February an opening came at Taché, but not in the wing for young adults with MS so that he had to be placed on a floor of mostly elderly people. When, after a short time, he got his own room, Deborah outfitted it with electronic aids. Suspended over his bed was a microphone-like device into which he could blow. One puff rang for the nursing staff, two puffs answered his phone or enabled him to place a call through the operator, three puffs turned on his radio and four turned it off. This gave him some independence but it was no substitute for human company or human-on-the spot response to his needs. Most days he was still able to be transferred to his wheel chair by means of an electric hoist and sling, although the transfer grew more and more uncomfortable for him.
On pleasant days in the summer we could take him downstairs and outdoors to the garden. Deborah spent many hours there with Patrick, reviewing his writings and having him decide which he would like to have pubished.
Friday nights were special. Deborah, the children and Jody Proctor, a dear young friend, came for supper and brought any visiting family member along. We accompanied Patrick to the cafeteria and occasionally brought along a picnic. Jody would take Becca and Cailum outside to play or around the residence and to visit and entertain some of the older folk, while Deborah and Patrick had a little time to themselves. Then everyone trouped back to his room to say goodnight.
Some days Deborah could get away from the university for brief visits. She was always available to Patrick on the phone. They had an understanding that whenever he had enough energy and wanted to talk with her, he could call at any time. She would pause in her work and they would visit. Patrick reached out to her almost daily.
Besides Deborah and the children, his wider family set up a schedule of regular visits, and friends continued to visit. During those final fifteen months, each month a member of our family in turn spent a week in Winnipeg. Patrick’s in-laws too came to visit, as well as his cousins and uncles when they were in town. Deborah graciously turned Patrick’s old bedroom into a guest room for visiting family and gave us a warm welcome. Each of us found these times precious. We learned to wait around the residence for those brief intervals when Patrick had sufficient energy to engage in conversation. He was like a glowing log in the fireplace whose flames occasionally leap up. As the months progressed we saw these moments recede and become ever briefer, yet we were happy just to be near him. I was content to see him enjoy meals I had made and fed to him, but I felt equally distressed whenever he had choking spasms.
Everyone's recollections of those visits is not of how we raised Patrick's spirits, but of how he raised ours. His keen interest in others was a quality that sustained him especially in his final years. This was certainly true of young people who aspired to write. Two stand out – his niece Mariel and his friend Jody.
Mariel recalled for us her last visit to see him.
Nothing had changed the last time I visited him, in August of 2003.
"Stay away from volcanoes!" "You're so innocent, you're going to end up raped on a beach somewhere!" and, of course, "Bring a suitcase full of condoms down with you!" were a few of his usual cautions about my upcoming visit to Central America.
The first thing he did when I sat down beside him was to recite a poem from memory that he had written "on the insides of his eyelids." It didn't seem to deter him, how his memory had weakened, he just plowed on through, pausing in concentration as the words came to him. His determination was extraordinary - and so inspiring that any excuse I could think of for not writing seemed ridiculous.
He sent me home the first evening with an assignment: to write something and bring it back for him. At that time, it was a struggle (emotionally) for me to write anything - I didn't trust myself enough. So after a lot of agonizing I finally let my pen spit something out, and I read it out loud to him so fast the first time I had to repeat the whole thing again. When I was done, he closed his eyes, leaned his head back, and heaved a sigh. "I hate my niece. She writes better than I can, and she doesn't because she's LAZY!" I highly doubted the former, but I couldn't argue with the latter. Compared to him, who continued to write despite all possible obstacles, I couldn't bring myself to put pen to paper because my ego was in the way?
Jody recalls her first visit to a "small abrasively sterile room" in the Misericordia Hospital.
… holding a collection of poems by Sylvia Plath. I read the poem 'Tulips' to Pat. … Pat was delighted by how passionate I was about Plath, and I loved that he seemed to appreciate her as I did. We had fun. I remember him tilting his head back and laughing up at the ceiling, his huge mouth wide in an open grin, his tongue moving with his laughter. I left the hospital in a fantastic mood, in a spirit of romance even; the world seemed much more interesting than it had when I first arrived.
As the visits continued regularly, Jody tells us,
I loved being able to tell him about everything really. Pat was a great audience, and I began collecting moments from my life to share with him. When I was out and about I would constantly find myself noting things of interest for him, and on the long bus rides to the hospital to visit him, I would mentally compile lists of exciting things I had done, seen, or thought so that he would be able to enjoy them. … I had the sensation of living the life he was no longer able to for the both of us; I traveled at every opportunity, and sought out dance and entertainment I thought he would be interested in. I enjoyed my life more thoroughly, knowing how Pat would appreciate the detail of it.
As the months slipped by, Jody saw his life ebbing:
As Pat's MS began affecting his energy level more and more, visits became harder; Pat had less energy to talk, and though his eyes were as alive as they always had been, there were more moments when they would dull with fatigue, his shoulders would slump, and it was clearly a struggle for him to stay awake. I was amazed during this time that Pat managed to maintain his efforts to be optimistic and engaged with the world around him. It showed a vibrancy of spirit that was undeniable. I was enormously inspired by this energy; he made life seem like an absurd and precious gift that no matter what, one was lucky to receive. We had a conversation once about how he did not seem to be afraid of death. He told me that of course he felt fear, but that he understood it would get him no where to give in to it. He looked at me with his eyes sparkling and said something like besides, one thing I do know for sure is that the first thing I'm doing is going dancing.
Throughout these last months, most of his waking hours were spent reclining in his wheel chair or lying in his bed, writing compositions in his mind, editing and memorizing his poems to be ready for when Loc Lu came. Loc recalled that Patrick seldom changed a word he dictated. With great concentration he simply moved forward. As the months of his final year unravelled, Luc also witnessed Patrick's ever decreasing strength. He spent less time in conversation with Luc in order to conserve his energy, his voice became weaker and their dication sessions shorter. Just before Christmas, Luc came by with a little gift for Patrick. As Luc was leaving Patrick said that he would call Luc in the New Year when he felt a little better. This was their last visit.
One morning, six weeks before he died he sent me on an errand downstairs to see the occupational therapist. I happened to mention to her that he was writing. Her eyes widened and she asked me about this. She said she wished she had known this earlier when he was not so weak, because she would have asked him to write a piece for her describing their services from the point of view of a patient. When I returned to his room and told him this, he barely responded. A couple of days later when he had a momentary burst of energy he told me to get his writing book and dictated from memory a piece he had composed for her in his head as straightforwardly as though he were reading it.
Patrick never lost his sense of mischief or his sense of the ridiculous. His brother in law, Murray Angus, told about his visit to Patrick:
He was, of course, not above being outrageous just for the sake of it. A tiny, but telling, example of this came during one of my last visits with him in Winnipeg, in late 2003. I had a digital camera with me and asked him to allow me to take his picture as he lay in bed. I framed the shot well enough, but a digital camera at that time had a split-second lag between the time the button was pressed and when the shutter actually closed. Patrick's pose looked fine as I pressed the button down, but when I looked at it much later, I discovered Patrick sticking his tongue boldly out— a reminder to us all, I felt at the time, that he still had what it took!
He could still tease me. Once, after a searching conversation about my politics and my faith beliefs he asked, " Mom, have you any idea how much you’ve changed?" I laughed but held my tongue not to retort " Are you sure it’s not you or your perceptions of me that have changed?’
For years he had postponed death, fantasizing that he would live to see Rebecca and Cailum grown up. Now he knew he would not. I did my best to reassure him that his influence would linger with them.
Patrick’s faith was not a conventional nor a dogmatic one, although he was respectful of his and Deborah’s families’ religious beliefs and practices. His spirituality was grounded in loving human relationships, in awe for the universe and in taking responsibility for making life good for all around him. An old friend of his tells us that in a conversation about religion Patrick remarked, "Yes, God… I think of God as a bag lady." To him, religious belief should not be to comfort the comfortable, but to draw our attention to poverty and exclusion, and to the need for social justice.
The week after New Year’s 2004, Patrick was hospitalized for an obstruction. Within hours he developed pneumonia and Deborah called us. The infection did not respond to drugs. With full awareness, he called Deborah and me to his hospital bedside at 4 a.m on January10th and told us, "it’s time".
The doctor came by at 9 a.m. and unselfconsciously knelt by Patrick’s bed and took his hand in his own. They talked for a while about the music gig the physician had been on the night before and then all he said was "Patrick are you sure?" And Patrick said "Yes". The doctor then ordered the medication to cease.
Patrick, who had lain prone for so long, asked to have his bed raised so that he could sit upright. We did not lower it until 6 p.m., when he fell quietly asleep. During that day, Carolyn, Deborah and I read to him from a favorite book, The Hitchhiker’s Guide through the Galaxy. Deborah and Carrie and Michael brought the children to see him, friends came by, as did the chaplain. Patrick’s sister Joanne and his stepfather, Pat, were with him as well on the final day.
Not long before he lost consciousness Patrick said he wanted to write. Michael, his brother-in-law, was sitting on one side of his bed and I was on the other. Michael took a legal pad from his briefcase and I leaned over Patrick, gently moving his oxygen mask aside to capture his words. I repeated them to Michael and Patrick dictated a last message for the family.
Getting organized to die was such a fascinating project. There were so many details to attend to. There was a host of medical matters to address, of course, as well as the inevitable contemplation of emotional rigors. It was in no way easy, but not for the reason I expected. The family was uniform in the strength of its support. My failing energy and doubtful heart were the impediments to the successful completion of the project. It is so weird even now to talk about my dying, but it is not something I am frightened of. I can only hope that the example I have set for my family members gives them courage when they go forward to face their own.
On his final day he was surrounded by his loving, praying family. That night, January 11, 2004 he passed away quietly with Deborah at his side.
Afterwards his brother and four sisters and many of their children gathered in Winnipeg. With Deborah we planned and made arrangements for his funeral, met at the house for supper each night that week, listened to Deborah read Patrick’s "Letters to Deb," looked at family pictures, told one another tales about him, played with Rebecca and Cailum, laughed, wept, embraced and consoled one another. It was the saddest and the best of family times.
We knew Patrick would have approved of his funeral, beautifully conducted at Patrick’s own request by the Reverend Tim Sale, who warmly welcomed everyone to St. Paul’s church: the little children gathered on a picnic rug at the front of the church with toys and books, surrounded by their caring older cousins; persons in wheelchairs; sightless persons, one with her guide dog; provincial and federal politicians; home care, hospital and university staff; all of his and Deborah’s families, and many friends and neighbors.
Patrick’s spirit lingered with us when Pat read from Moby Dick, as requested by Patrick, and introduced it with the entry from Patrick’s journal. The readings, reflections, Deborah’s reading of a poem by Patrick, Jody’s poem and Robert’s eulogy all reflected the spirit of Patrick, but nothing was more himself than the rollicking recessional "My Uncle Walter Goes Waltzing with Bears" expressly requested by him – who had assured us that he would be dancing.
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