What was.. and what could have been

Today, the thrift store pick-up service came and took away our old sofa. Despite its faded and worn upholstery, its sagging sofa bed frame, and the fact that it was never going to darken the doorway of the new house, I became emotional upon seeing it leave.

Chris and I snuggled together on that sofa; we opened it up and watched movies together under a comforter on cold winter nights; we read, ate, napped, listened to music, and recovered from various colds & surgeries on it; Chris found relief in a few hours of sleep there many nights when he couldn't sleep flat in bed. He spent the last hours of his life on that sofa the night before he died. Did he sleep soundly or did he toss and turn, unable to get comfortable? I'll never know.

Today was also the closing day for the sale of the house that Chris and I bought back in June... back when life was so joyful and seemed so full of promise. After the call came from the lawyer's office to say the deal was officially closed and the cheque was ready to be picked up, I burst into tears.

After Chris died, I waffled back and forth several times about whether to keep the house. Despite his death, the things that we loved about the house were still there: the coved ceilings, the original glass doorknobs, the arch-topped front door, the pink and white (!) marble-tiled bathroom, the shaded front porch, the wonderful old neighbourhood full of trees, etc. We never aspired to a huge McMansion in the 'burbs with ensuite bathrooms and a 3-car garage. That charming little house was our dream home!

In the end I decided not to move into the house mainly because of what Chris loved most about it: the enormous kitchen (23' x 14'!). As a person who loves eating but only enjoyed cooking as Chris' sous-chef, I was haunted by the vast emptiness of that kitchen. I saw myself lost in there without him - without his love of fresh, savoury ingredients, his fearless experimention with new recipes - pouring his love for me into his creative outlet of cooking. That kitchen was barren for me without Chris.

I decided to let the house go, to pass it on to someone who would fill it with love and laughter as Chris and I had planned to do. Last weekend I held a house-cooling party at the house for friends and family to thank them for their support and also to leave some good karma for the family that bought it. I decorated the house with lots of Christmas lights and hung our stockings by the chimney with care (in the hopes that Chris' spirit soon would be there). We had a wonderful evening with lots of laughter, a few tears, great music, and good food... Chris would have loved it.
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Water of life

A little while back Mark, an old of Chris’, e-mailed me and mentioned in passing a YouTube video he had come across which featured a photo slideshow of UWO library school students – including Chris! He had stumbled onto the video while searching for music by local Celtic band Uisce Beatha. Turned out that there were a lot of interesting coincidences as this story unfolded…

When I lived in Ottawa in the early '90's, I was good friends with a brother of Uisce Beatha’s bass guitarist and a group of us used to go see the band play whenever they came through town.

Years later when I met Chris, Uisce Beatha came up in conversation somehow or perhaps I saw one of their CDs in his collection. Turns out that during the same years that I saw them play in Ottawa, Chris and Mark were going to see them play in London regularly for the home town crowd!

Jason, the creator of the YouTube video, "Rarin' Librarians", was a former TA student of Chris' at library school. It turns out that Jason’s decision to include the Usice Beatha song “Old South London” as background music for the video was influenced by Chris.

Jason did a blog post about creating a SW Ontario playlist and Chris, the music guru, submitted a few songs that fit the bill, including "Old South London". Jason had never heard the song before - even though he too had seen the band live in concert - but he realized that it was a perfect soundtrack choice when he was creating his library school slideshow.

None of us knows if Chris was even aware of the video’s existence - but I know that he would have enjoyed it! And he would definitely appreciate the myriad of social networking connections in this tale – nodding his head knowingly with that wry smile and a twinkle in his blue eyes. We’re all connected, in past and future, in more ways than we can even imagine.
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Elephants never forget

Anyone who knew Chris knew that he loved elephants. They are incredible creatures of amazing strength and gentleness. Chris was fascinated by their complex social structures and rituals, and the legacies of their multi-generational memory.

I brought his large collection of elephants to the funeral home and invited people to take one and keep it as a memento in memory of Chris. Many people hesitated at first but I encouraged them and by the end of the day, all had found a new home. One of the stuffed elephants went home with his cousin's young daughter. When I asked her what she would name it, she replied "Chris".

Today I was going through the box of Christmas decorations and came across a lovely elephant ornament I bought Chris several years ago that I had completely forgotten about. It was supposed to go up in our first Christmas tree that we were going to put up in our new house this December.

A few weeks ago, I was reading an article in the Globe & Mail about a limited edition bentwood elephant stool that is being produced in honour of the anniversary of renowned designer Charles Eames' 100th birthday. It's so cool - Chris would have loved it! (However, it would have been quite a pricey addition to his collection!)

There is an natural habitat elephant sanctuary in Tennessee where old, retired, and sick elephants can live out the their days in a reasonably natural environment free from circus tricks and zoo enclosures. Chris came across the sanctuary's site several years ago and wanted to support this worthy cause. Perhaps that will be my Christmas gift in memory of him because elephants - and Chris - never forget.
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Happily ever after?

Is it really better to have loved and lost than never to have loved at all? Sometimes I wonder... My aching, painful heart would argue no - it would rather not feel at all some days. The deep and gaping emptiness, the waves of pain and sadness are sometimes so overwhelming.

I stupidly chose to watch a cheesy favourite movie tonight, Notting Hill. (I know, but I can't resist Mr. Grant's charming accent and self-deprecating humour.) I should have remembered that happy endings make me cry at the best of times. This is not the best of times - it is the worst of times! Happy endings and fairy-tale weddings only remind me of what I lost when Chris died. What we had for so very short a time.

Why couldn't we live happily ever after?! Hadn't we had enough #@&$*% crap to last a lifetime!! Was it too f****ing much to ask for even a few years of tranquil, domestic married bliss before ripping us apart forever (or until whatever interpretation of afterlife turns out to be reality)! Each January 1st for the past several years we had been saying "This year will be our turn-around year!" But each of the past few years were tinged with with tremendous losses and challenges: the death of both my parents and my uncle; Chris' increasingly uncertain health; etc.

We thought that getting married and buying our little dream house were the beginning of a new chapter of a long and satisfying epic not the closing chapter of a bittersweet novella. I feel like we'd taunted the fates, living our lives instead of cowering in fear of the next blow. I don't taunt them anymore, I just try to quietly get through one day at a time. Live life to its fullest each day, enjoy whatever little pleasures come along, because it may indeed be the last time.

It's very late and I'm feeling dark tonight. Empty and sad, angry and lonely. No more romantic comedies for awhile...
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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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