Gift of warmth

Tonight I slowly and tearfully folded up Chris' winter coat and placed it in a bag with his winter boots. This past spring I had washed it and put it away, never thinking in a million years that Chris would never again wear that coat or those boots. Never again would we go for walks together in the fresh, bright snow. Never again would he bundle up against a damp, biting cold windchill to go up to school. Never again would he search through the coat's many pockets for a missing glove.

Tomorrow I'm going to drop them off at the Boys' and Girls' Club of London for their annual Koats for Kids winter coat campaign. The program collects winter outer wear primarily for children but also for those in need of all ages.

There are many similar programs in communities all across the country (e.g. Snowsuit Fund of Ottawa). If you have unused or outgrown winter wear such as coats, boots, scarves, mitts, and/or snowpants taking up closet space, please consider donating them to this worthy cause. It will warm you and others.
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If only...

When I look back on Chris and my time together, I have few regrets. We were lucky, we lived in the moment. Not necessarily because of Chris' condition but in spite of it. But of course there were things that I wish had been different…

• if only we’d known that it probably wasn’t mysteriously persistent heartburn but perhaps early signs of aortic pressure which led to the dissection that killed him
• if only an angiogram or even an ultrasound had been done of his arm before he underwent surgery to create a fistula that took months to heal, was painful to access, and ultimately unusable
  
• if only he’d started on a high dose of prednisone last fall
• if only he’d never developed encapsulating peritoneal sclerosis (EPS)
• if only we’d started home hemodialysis last year
• if only he and one of his doctors had had a more communicative and respectful relationship, his fluid overload would have been addressed sooner when his blood pressure was already sky-high
• if only he hadn’t had to wait 14 months before being assessed to be put on the transplant waiting list after moving
• if only he hadn't had a bout of peritonitis, perhaps no EPS?
  
• if only one of the two transplant calls in Ottawa had been a good match
• if only he had been offered home hemodialysis instead of peritoneal dialysis, perhaps no EPS?
• if only my parents hadn’t been in poor health and lived so far away, I could have been tested to be a kidney donor years earlier
• if only his drug dosage had been more carefully monitored when he got his first transplant, he wouldn’t have suffered toxicity and the kidney might have lasted years longer
• if only his blood pressure and kidney function had been more closely checked as a youth
• if only his condition had been diagnosed at age 2 or 3 instead of 9 or 10, his kidneys would have suffered so much less damage, he might not ever have needed dialysis
• if only he hadn’t had a fluke birth defect
• if only…
  

But all these things did come to pass and none of us – Chris included – can take the blame for them. Because despite any second guessing and misplaced guilt, all these experiences contributed to making Chris the person he was: strong, patient, curious, tolerant, wry, generous, empathetic, and loving. Were they fate, chance, flukes, destiny, mistakes, oversights… who knows. The only thing to do is what Chris usually did: learn and let go and love.
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In sickness and in health

It occurred to me a little while ago that not only do I miss Chris - I miss caring for him. While he was obviously able to make his own decisions about his care and his self-management as a person with a chronic illness, I was his caregiver in the sense that I was his sounding board for decision-making, his nurse when he was recovering from surgeries or procedures, his advocate when he was not able to do so for himself.

I did all this passionately and without question and with the instinct to protect and care for the one I loved most in the world - the one to whom and for whom I would gladly have given anything, including one of my own kidneys. Chris’ kidney failure was a fact of our lives but one that we strove to not make the focus of our lives.

Now that Chris is gone, my caregiving duties are dramatically reduced. They are now only to myself - and to Sprockets of course! But I miss caring for him, worrying about him, researching new approaches to treatments and therapies, helping him shower, changing his dressings… he doesn’t need my caregiving anymore. He’s free, to care for all of us… who need it now more than ever. Take care.
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Día de los Muertos

Several people have asked me where Chris' ashes are buried so that they might go and visit his grave. We buried his ashes at Mount Pleasant Cemetery and his grave is in the middle of Section QR, right in the heart of the cemetery.

Although his body was cremated, I chose to bury his ashes in the ground rather than a wall niche. You can find his grave in a clearing under three very tall trees. His grave only has a small temporary marker until the permanent headstone is put in place (probably not until after Christmas).

The cemetery is open every day and is a beautiful neighbourhood park where you will find people jogging and walking their dogs. Visitors may leave flowers or other tokens such as poems or mementos.

A friend recently told me about the traditional Mexican Day of the Dead which is celebrated on November 1st. This naming may seem macabre to our sensibilities but celebrations in honour of deceased family and ancestors are marked around the world in many forms. The Christian tradition is marked by All Souls' Day on November 2nd.

I have memories of visiting family graves in Barbados at Christmas time and leaving beautiful tropical flowers in honour of deceased relatives. I will celebrate Chris' life by bringing him flowers on this upcoming Day of the Dead and remembering how much joy he brought into my life.
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Home is where the heart is

“Where is home?” This question was recently posed to me by my social worker. The old familiar adage is: Home is where the heart is. If that is true, where is my home? I used to say Northern Quebec for that is where I was born and grew up, where my parents lived in the same house for 40 years, where I could retreat to familiar childhood comforts and places.

During the time when my parents had to move into a nursing home and our family home was sold, I realized that my home was now with Chris in Ottawa, where we lived and worked and had begun to build a life together. When we moved back to London, I missed our life in Ottawa but my heart was with Chris and so my home was where my heart was.

Arriving back in London from my recent trip, I was hit very hard by the realization that no one would be there at the station to meet me, to welcome me home. Chris would not be at home eagerly waiting my arrival, beating Sprockets to wrap me in his loving arms and kisses. My tears began in the elevator and spilled over upon entering the dark, quiet apartment. How can this be home when my heart is no longer here? Where is my home… where is my heart?
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Librarian at peace

Behind the Parliament Buildings in Ottawa – with a stunning view of the river, the surrounding city, and the distant Gatineau Hills – stands the beautifully restored and majestic Library of Parliament.

This is where Chris and I first met on a “back-stage” tour offered to library school co-op students working in Ottawa. During the tour, Chris reverently referred to this magnificent building as “Mecca for librarians”. As a nod to that romantic and important setting, I gave Chris silver Library of Parliament cufflinks as a wedding gift – he was tickled pink, and promptly had his best man take scissors to the cuffs of his dress shirt so he could wear them at our wedding.

Following my parents’ deaths, we mused about where we might want to be buried. Chris had mentioned that he would like some of his ashes scattered behind the Library of Parliament because that was where we met. So that’s what I did on a beautiful but chilly day several weeks ago. It ended up being too windy – and too busy with tourists – to have the privacy and solace for this quiet moment so we walked down to the bike path which runs along the base of the cliff below the Parliament Buildings.

There, I found a beautiful, tranquil spot looking out across the river and gently scattered the ashes of Chris’ body amongst the wild flowers and fallen autumn leaves under the trees. If you look up the cliff from that spot you can see the Gothic spires of the Library of Parliament through the trees. Nearby there are two benches where you can sit and enjoy the view and think of Chris.

....

He would have been happy with this choice and I know that I will always be close to him in this favourite place where we found each other.
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Fellow passengers

Travelling and trips have long been metaphors for life’s journey. The mythology of discovery of enlightenment or wisdom along a pathway from where one is to where one is going is a core narrative in human story-telling around the world. Along the journey of our life we meet so many people, often never knowing at the time which ones will be with us for the long haul and what we will learn from our fellow passengers.

As I travelled this month I witnessed friends, lovers, families experiencing tearful goodbyes and reunions, joyful and boisterous welcomes, promises of postcards to be sent, thank you’s for home-cooked meals… I too exchanged these with dear friends during my trip – friends whom I feel like I’ve known my whole life. Forgiveness, unconditional love, affection, and support are at the foundation of these relationships. These friends are now like family to me. I wonder if I need them too much – what do I give to them? That time will come… hopefully I will be ready.
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Stations along the way

Travelling by train has always been a favourite of mine, as it was of Chris’. Grounded to the land and removed from the crowded frenzy of highways, trains often provide passengers with a more tranquil and reflective environment.

Although I’d taken this trip many times before, I hadn’t realized the memories which would be evoked by some of the stations along the way – stations where Chris and I stepped off together for weekend getaways and vacations.

Belleville: near Prince Edward County where we spent several wonderful holidays, where we got married, and where we musingly talked of one day retiring. Kingston: where we had a fire-lit romantic winter weekend at a local inn and watched river ice breaking in the misty waters at the bow of the Wolfe Island ferry. And of course, the destination: Ottawa, where Chris and I first met, fell in love, and began to build our life together.

This trip was a way for me to step forward alone but also to look back and realize that I don’t need to abandon that which is behind me in order to find a way ahead – those experiences and memories will help me find my way.
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Voice of the voyager

Earlier this month I went away on a trip – my first since Chris passed away. It was a journey of many moods and meanings – some unexpected. Travelling alone for the first time since his death, I brought along his beloved iPod on my trip.

More than simply portable entertainment, it brought me into Chris’ world in a way that I had not entirely expected and brought Chris along with me on a journey where I thought I would be alone.

While I enjoy music, I am not a music lover by nature in the way that Chris was. He experienced music. He breathed and felt and tasted music. Chris internalized and expressed the spiritual, rational, and emotional voices of his life’s journey through music.

I had forgotten how different music sounds and feels when using headphones. The music pours right into your head – into your body – no longer simply surrounding you but spilling out from within. This was how I felt listening to Chris’ music on my journey. He was within me and surrounding me. I felt his love of music and tasted his love of life.
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Don't worry, be happy

We're probably all familiar with those lists of stressful life events. Most are based on the Social Readjustment Rating Scale developed by psychiatrists Thomas Holmes and Richard Rahe, commonly known as the Holmes-Rahe Scale. The scale is composed of 40-45 life events that are each given a numerical value or weight. The death of a spouse carries the highest value (100). Interestingly, marriage carries the 7th highest value (50) and is considered more stressful than being fired (47) or the death of a close friend (37).

The results are generally categorized into three ranges:
Score of 300+: At risk of illness
Score of 150-299+: Risk of illness is moderate (reduced by 30% from the above risk)
Score 149-: Only have a slight risk of illness

Given the past few years of my life - and my inability to resist completing surveys & questionnaires - I was curious to see how I would fare according to the good Drs. Holmes & Rahe. I scored 431.

A pop-up box pronounced with alarm: This score indicates a major life crisis and is highly predictive (80%) of serious physical illness within the next 2 years. Great - like I don't have enough to be stressed about, now I have to worry about not getting sick!

Look at what time it is! I'd better get 8 hours of restful sleep before eating a balanced & nutritious breakfast and going to yoga. {:-@
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Like a pebble in my shoe...

I’ve been going through Chris’ things. I slowly triage the boxes and books, the clothes and the CDs. But some things I can’t do anything with. His shoes for instance... I can’t bring myself to even remove them from the shoe rack. A person needs shoes, especially in the winter! If he came back and found all his shoes gone, what would he do...

We wear in our shoes. We break them in. We leave an imprint of ourselves, our weight, our gait, in our shoes. How could they be anyone else’s? They’re so personal, so individual.

I recently read a poem entitled Death in Absentia which contains these evocative words: Like a pebble in my shoe / I’ll walk with you for the remainder of my days.

So what else can I do but keep Chris’ shoes? Joan Didion wrote so very eloquently about this heartbreaking and illogical dilemma in The Year of Magical Thinking. I remember thinking her predicament odd when I read the book, but now I understand.

So many things in life seem odd until we experience them... and then we understand. We walk a new path - in someone else’s shoes.
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Brotherly love

Chris' brother Ryan gave me a lovely gift this weekend. It’s a copy of a forthcoming book from Random House entitled Hockey's Young Guns which Ryan co-authored for The Hockey News where he is a writer. Chris was pretty proud of his “kid” brother and kept abreast of his latest articles and interviews but this would really have made him burst his buttons!

When Ryan presented me with this gift I had no idea that he had included a special tribute to Chris who passed away before knowing that the book was forthcoming. The dedication page contains just two simple but poignant words: for Chris

I know that Ryan will carry his big brother’s spirit and love with him throughout his life’s journey. And I know that his big brother will always walk beside him.
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Ashes to ashes, dust to dust

We buried Chris' ashes today.

It was the kind of day that Chris would have loved: blue, blue skies; bright, golden sunshine; a light refreshing breeze blowing through the red, orange, yellow and green leaves; not too warm - a perfect September day. Fall was Chris' favourite season and he often said that September weather was the best of the year. He was usually right!

We buried his ashes in lovely clearing beneath three soaring trees deep in the heart of one of the oldest cemeteries in London. It's a beautiful, tranquil retreat from the noise and bustle of the city. Chris & I often walked there, as do many people in the neighbourhood, enjoying its park-like setting. I know that he will rest peacefully there with the birds and squirrels to bring him the news of the day between my visits.

This is the poem I read at his burial:

Music I Heard
By Conrad Aiken

Music I heard with you was more than music,
And bread I broke with you was more than bread;
Now that I am without you, all is desolate;
All that was once so beautiful is dead.

Your hands once touched this table and this silver,
And I have seen your fingers hold this glass.
These things do not remember you, beloved,
And yet your touch upon them will not pass.

For it was in my heart that you moved among them,
And blessed them with your hands and with your eyes;
And in my heart they will remember always, -
They knew you once, O beautiful and wise.

I also read the closing chapter of Trumpet of the Swan, one of Chris' favourite books. For those not familiar with the book, it was written by renowned children's author E.B. White who also wrote the beloved Charlotte's Web.

Trumpet of the Swan is the story of Louis, a trumpeter swan who was born mute and how he overcomes his handicap with creative thinking, determination, and the support of family and friends. Along the way he has many adventures and eventually meets the swan of his dreams whom he woos with his musical prowess. It's easy to understand why Chris loved this story and why it was particularly resonant to him. I think he would have liked the simple pleasure of this tribute.

Rest in peace my love.
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Kitty love

Everyone knew that Chris and Sprockets had a love-hate relationship - he loved her, she hated him. But since his death, I think that she actually misses his teasing, his seemingly dangerous slippers, his never-ending efforts to endear her to him...

Chris and Sprockets enjoying some rare "together time"
on the Lazy Boy this past Spring.

Sprockets consoling herself on Chris' fleece blankie last week.

First wedding anniversary

Today is my first wedding anniversary. It's been a day of very mixed emotions...

This morning a group of us including Chris' family and friends participated in the Kidney Foundation's annual Be a Lifesaver Walk for Organ Donation Awareness. The weather was gorgeous and the turnout and funds raised were about double last year's figures! I was overwhelmed by the generosity of the people who joined my team and came out to walk with me in support of this wonderful cause. I was also overwhelmed the generosity of our sponsors - the final tally for our team, Carpe Diem Chris, was over $4000 towards transplant research! I feel that Chris was with us every step of the way.


Of course, it's hard not to think of this day last year - our wedding day, when we promised to love and cherish "as long as we both shall live". We never imagined it would be so very short a marriage when we had so much love to share; when everything in our lives finally seemed to be falling into place; when the future looked so full of happiness and promise.

Our wedding ceremony also included a request for a Declaration of Support from family and friends as read by our officiant:

As their families and friends, you form the community of support that surrounds Sandra and Christopher. Each of you, by your presence here today, is being called upon to uphold them in honouring and loving each other. Always stand beside them, never between them. Offer them your love and support, not your judgement. Encourage them with your kindness and loving hearts, and honour this marriage into which they have come to be joined today.

In the past several months, this support has been absolute and it is the reason I'm able to get out of bed in the morning; the reason I know that - one day - I will look forward to the future.

I will always be thankful for Chris coming into my life and I will always celebrate this anniversary of love. I love you & I miss you, ваша Кошенька.

First dance, "Rainbow Connection" Sept. 23, 2006
[thanks to Charlene for the video clip!]
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It's the little things ...

Things I miss...

• your voice
• your arms around me
• your warm feet
• picking up after you
• your soft hands
• your worrying about me
• being your sous chef
• your rockin' air guitar solos
• your Russian endearments
• reading the G & M with you over brunch
• the sound of the coffee grinder
• your twinkling blue-grey eyes
• the door being unlocked when I get home
• messages from you on the answering machine
• rubbing your arm as I go to sleep
• hearing you tell me you love me
• the sound of your key in the lock at 10pm on dialysis nights
• your thoughtful, sweet presents/presence

Thank you...

• for filling my life with love
• for making me laugh 'til I cried
• for giving elephants voices
• for cooking wonderful gourmet food made with loving passion
• for loving me because/despite that I'm just a little crazy
• for making me feel so beautiful & special every day
• for being my rock & my safe harbour
• for trying to live every day as if you didn't have kidney failure
• for trusting me to care for you
• for sweeping me off my feet

I wish I'd had time to tell you just one more time how much I love you... but we said all these things - often. We knew, my once-in-a-lifetime love.
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More late night reading

Former U.S. Poet Laureate Donald Hall wrote a volume of poetry entitled Without: Poems after his poet wife Jane Kenyon died of leukemia in 1995. The poems are raw and touching and so full of love and pain. Anyone who has experienced love and loss will find his words resonant.

Is the ultimate experience of intimacy to watch a loved one die? Such an incredible gift to the dying one, such a responsibility for the survivor.

Birthday wishes

Today is Chris' birthday. He would have been 35 years old. He would have been back in school for a couple of weeks by now, finishing his PhD coursework this term in preparation for writing his comprehensive exams sometime next term. We would have been preparing to move into our new house, frantically purging and packing. We would have been planning our 1st wedding anniversary weekend getaway to Toronto having already made reservations weeks in advance at Canoe, North 44, and Rain. So much to look forward to…

Today is a sad day, filled with longing and unfulfilled hopes and dreams. But it is also a day to celebrate Chris, to remember how he made us laugh, how he enjoyed his friends, and how lucky we were to have been welcomed into his circle of love.

Think of him today and send him a birthday wish and go out into the world.

Professor Vlad's memories

I received this very touching message from Vlad, one of Chris' Russian Studies professors.

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I was Chris' professor of Russian and Comparative Literature in the 1990s. In fact he was in the very first class that I taught at UWO in 1991 (first-year Russian). He then took all the Russian classes we had to offer and went on exchange to Minsk about which he surely told you. He came back from Minsk able to converse in Russian and I recall how amazing it was to actually carry on a conversation with him!

Chris was the most memorable student I ever had and I've been here for 15 years. His keen expression will stay in my mind for as long as I live. He always tried to learn. Russian is a very difficult language but Chris was never put off by that. The amused look on Chris' face whenever he struggled to get his tongue around a difficult passage of Russian prose or when he had to figure out the right verb ending from an endless array of inflections seemingly invented by a sadistic academic always meant that even the most challenging exercise was pure enjoyment for him.

From the very start Chris told me about his renal condition. Sometimes he had to miss classes because of his health. Once I even pointed out his frequent absences to him and quickly bit my tongue when he explained why he hadn't been coming. I was so happy for him when he had his first transplant and it seemed that all his troubles were over. That's why I was so shocked to learn when I met him recently that things hadn't turned out the right way for him.

Chris was part of a group that acted as guinea pigs for my language teaching method involving music. The method was eventually translated into a textbook published in 1996 in the US: Listening to Okudzhava: Twenty-Three Aural Comprehension Exercises in Russian. Chris' name is in the dedication – in first place. That should tell you how much I valued his input. The book was reissued with corrections in 2000 and a new set of student names appeared in the dedication after a course I had taught at Indiana University. But Chris' name was still first. It will always be first in my mind. I suspect the book is still part of Chris' possessions and you may have seen it.

Chris house-sat for us and took care of our dog one summer. He came over for dinner a few times and even brought a present to my son Alex. Alex still remembers that Nerf gun. And when Alex was still inside my wife's pregnant belly, Chris met us at Gibbons Park and was amazed to see "his professor" in such an unprofessorial state. He was very young then (recently out of high school) and probably thought (sort of) that professors somehow lived only in their offices and could not possibly appear unshaven, wearing shorts and accompanied by a very pregnant wife.

Chris and I met for lunch a year ago when he looked me up after his return from Ottawa. He looked great, told me about you and about his Ph.D. plans. He sounded so positive that I could not be happier for him. Now I kick myself for not contacting him after that lunch. Life just takes us into its whirlwind and when we wake up we often find that we've neglected to do the really important things. Seeing Chris again would have been such a thing. Chris was important.

Chris was one of the most tolerant people I've ever known. He always had an ear for any opinion, giving everyone the chance to expresses him or herself. And the sparkle in his eye seemed to say: "Maybe, maybe, why not..."

I would like to close by saying that Larissa (my wife) and I can't stop thinking about Chris. We grieve with you. We feel a sense of loss. We see his face in our mind's eye. It is always a smiling face though and that makes all the difference. It is hard to cry when you see a smile. You can't help but take a deep breath and smile back even through tears. And then you think: that smile has marked me and I feel better for it. To quote my favourite Russian author, Sasha Sokolov (whose prose Chris read in my class), Chris has left his footprints in my soul.

Two thumbs up

This is a great photo of Chris with his friend Martin, hanging out at the legendary Mount Brydges Audio Video where Chris worked when he was a student. The combination of his love of movies and his steel-trap memory made him a favourite among patrons for whom he provided personalized recommendations and friendly, knowledgeable service. [Thanks to Tara & Martin for providing the photos!]

Martin & Chris - cheers!

Chris working his magic behind the counter.