Missing the Chris in Christmas

The first of everything is painful after the death of a loved one, especially the person with whom you shared your days & nights, your hopes & dreams, your other self.

Over the past months I've struggled through buying and selling our first house, Chris' birthday, our first wedding anniversary, and Thanksgiving. Others in his life have also passed their own milestones: his grandmother, parents, and brother have now each celebrated their first birthdays without a phone call or a card from Chris.

He wasn't there to raise a glass or make a wry joke or suggest a good restaurant for a birthday dinner. We've remembered him at those times when we gather together as friends or family but our celebrations are just a little quieter and there's a trembling of emotion in our laughter.

And now it's Christmas... the most storied and emotionally fraught celebration of the year.

When Chris and I bought our house, we served notice to family that we would be hosting this year. We had already planned where we were going to put our first tree (real of course!) and what we were going to serve for Christmas dinner (crown roast instead of turkey). There were covert plans to hide the television so that we would all spend the afternoon together talking or playing boardgames or going for a walk or singing along badly to cheesy Christmas tunes or all of the above.

Christmas this year will be a difficult and strange one. None of us is quite sure how to get through it. Chris' absence will be blatant - perhaps even more so for his family because I will be there but he won't. It's not like the Christmas when the two of us went to visit my parents and we were both absent from his parents' house. Not buying gifts for him, not writing cards with him, not debating the merits of gravy vs. cranberry sauce - all of these are making my heart ache even more than usual.

Somehow we'll stumble through the emotional minefield of the next week. I'm blessed with friends and in-laws who consider me family. Although I may feel lonely without Chris, I won't be alone this Christmas. I'm luckier than many. If you know someone who may be alone this Christmas, consider how much comfort you could give them by inviting them into your lives this holiday.

Merry Christmas
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Doing the best we can...

Over the past several months, a number of people have told me how strong or courageous I am. I can't say that I feel terribly strong or courageous.

Sometimes I feel as weak and helpless as a newborn. Sometimes I just want to lie in bed and cry... and I do. Sometimes I'm totally confused and overwhelmed. Most of the time I just put one foot in front of the other, pick one thing to focus on getting done and doing it - no matter how slowly. Because the alternative is giving up and sinking into the suffocating dark exhaustion of depression and letting myself slowly die.

Perhaps surprisingly, I don't want to do that. At least not enough to really fall all the way. There are things I want to accomplish, things I want to see, people I enjoy spending time with - that is the light that guides me along this dark path.

Over the past several weeks I've been reading a remarkable series of articles in the Globe & Mail by columnist Ian Brown. He has written very candidly about life with his 11-year old son Walker who was diagnosed with an incredibly rare genetic disorder: Cardio-Facio- Cutaneous Syndrome. The three lengthy articles cover everything from the family's years of chaotic home life, the dizzying turnstile of medical appointments, the agonizing uncertainty of every care-giving decision, all punctuated by episodes of pure transcendent joy and wondering glimpses of life's true essence.

I'm sure that many people have told Walker's parents Ian and Joanna that they are courageous and strong, they are. But I know that they probably don't feel it most of the time. Most of the time, they're just trying to do the best they can - for Walker, for their daughter Hayley, for themselves.

Most of the time, that's what being strong and courageous is all about - just trying to do the best we can.
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Imagine... Iceland

One of Chris’ favourite musicians was John Lennon. In addition to John's musical talents, Chris admired his intellect and wit, his outspoken political and social activism, and his deep love for his family. I think we all recognize some similarities!

In October of this year, on what would have been John’s 67th birthday, Yoko Ono officially unveiled the Imagine Peace Tower on Videy Island, just off the coast of Iceland. The installation is a memorial to John and its tower of light, reaching into the sky, a beacon of hope for worldwide peace – a cause that John worked for and and sang about tirelessly.

Imagine by John Lennon

Chris often talked of one day visiting Iceland, especially after he discovered the band Sigur Rós who hail from that country. I’m not sure where his love of all things Nordic originated but I knew that we would one day see Iceland. I thought we would see it together... I was wrong.

I've made a promise to Chris that I will go to Iceland one day. I plan to scatter some of his ashes at Látrabjarg, an achingly beautiful area known for its fjords, soaring cliffs, and seabird colonies.

Glósóli by Sigur Rós

I think Chris would like that two of his musical favourites are now linked by geography and spirit. Iceland is a fascinating and beautiful country, rugged and cold, proud of its natural beauty and independent spirit… sounds kind of like home doesn't it?
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Stand up and speak out

I dedicate today's posting to the memory of my beloved mom. She was a remarkable, vivacious, bright, well-travelled, creative, and passionate woman. She was also a wife who lived under the silent shroud of verbal and emotional abuse.

Every year on this date, no matter where I am, I go and pay tribute to the memory of the many women who suffer violence and abuse at the hands of men who often claim to love them. I weep silently in the candlelight and wonder why. This year I won't have Chris beside me for support and comfort.

We cannot remain silent and look the other way. It is long past the time for polite silence when our friends, sisters, daughters, and mothers are suffering at the hands of our friends, brothers, sons, and fathers.

This is not a 'women's issue' or a 'feminist issue'. This is a matter of life and death. ALL of us - women and men - must stand up and speak out. We can break the endless cycle of abuse.

Family Violence: It's your business
National Clearinghouse on Family Violence
The White Ribbon Campaign
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Chris' love song

Love Song (The Cure)

Whenever I'm alone with you
You make me feel like I am home again
Whenever I'm alone with you
You make me feel like I am whole again

Whenever I'm alone with you
You make me feel like I am young again
Whenever I'm alone with you
You make me feel like I am fun again

However far away
I will always love you
However long I stay
I will always love you
Whatever words I say
I will always love you
I will always love you

Whenever I'm alone with you
You make me feel like I am free again
Whenever I'm alone with you
You make me feel like I am clean again

However far away
I will always love you
However long I stay
I will always love you
Whatever words I say
I will always love you
I will always love you

Love Song by The Cure

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The bustle in a house

I'm pretty tired of death. I'm also pretty tired of the paperwork that inevitably seems to accompany every aspect of life... and death.

I'm tired of closing estates of the people I loved most. My father, my mother, and my husband - in the span of little over two years. I'm getting to be too damned good at it.

I'm tired of receiving mail addressed to The Estate of the Late [insert relevant name here].

I'm tired of going through personal things, trying to decide what to do with them, where they should be sent, to whom they should be given.

I'm tired of boxing up the remnants of my loved ones lives.

Because in the end that seems to be all that's left of anyone's life - one or two boxes of odds and ends, those incredibly personal things that have no monetary value or practical use: photo albums; love letters; awards & medals; sentimental mementos whose stories are now lost forever.

The responsibility of putting away someone's life is so underestimated. Yes, we live on in the hearts and memories of our loved ones and, perhaps, here and there in public documents. But what of those most intimate and personal touchstones? What do we do with them? Remember what happened to Rosebud?

I always feel so sad when I come across loose photos and postcards in antique shops. They should be with their families, people who care about their stories and are linked to them through time.

Many years ago I read a beautiful poem by Emily Dickinson that has always remained with me:
    The bustle in a house
    The morning after death
    Is solemnest of industries
    Enacted upon earth, -

    The sweeping up the heart,
    And putting love away
    We shall not want to use again
    Until eternity.
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Life gone in a flash... or a spark

Time is a strange, fluid element. Mercurial in its ability to stretch and shrink, stop and speed by. Yesterday marked five months since Chris' death. Unbelievable. Already some memories are becoming fuzzy; others are all too painfully sharp and clear. Possibly never to fade.

His death is still unreal in so many ways - a nightmare from which I cannot awaken. Our time together - so fleeting - seems like a dream to which I cannot return.

When we were separated during my last term in grad school and Chris was working hundreds of kilometres away, four months seemed like an eternity. Now I will begin to know what an eternity apart truly feels like. Or not...

I've been asked what I thought happens to us after we die. Like everyone but Lazarus, I don't know. I know that I don't believe in a heaven where angels walk on streets of gold and strum harps. But I do believe that all of that electricity and 'life energy' that courses through our bodies, keeping us alive, cannot simply disappear. Mother Nature doesn't do things that way. She's the original recycler!

I imagine that 'life energy' slipping out of our bodies after we die and surging up into the skies, much like bonfire sparks swirling up into a night-time sky. A romanticized image? Perhaps... who knows. We all have our own vision of heaven. The vision that gets us through what seems like eternity.
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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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