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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