my tragic right hip

As a publishing professional, I’m curious about the changes in our industry, about the opportunities, and about platform. So, here’s our grand experiment. Written over the last couple years in the half-hour I had a few times a week, it’s a chicklit novel (with a bit of an edge) about a young woman trusting her instincts and carving out her life, on her own terms. Because I’m an ebook person, and because I have Rebecca Mills, my amazing partner-in-crime when it comes to this endeavour, we are trying out digital-only publishing.

So, The Work Boyfriend is in the world. It’s up here at Amazon, through Kindle Direct Publishing, and here at Kobo through their amazing Writing Life platform, here at Google, and here at iTunes.

Like I said, we’re curious to see how it all works. But, overall, I just wanted to prove to myself that I could finish something–and I hope for those who kindly decide to read it, that they enjoy it.

I have a million and a half people to thank, the aforementioned Rebecca, without whom the book would simply not be up at any of the vendors; my family, who loves me but, more importantly, puts up with me; especially my sister-in-law Denise and her friend Charlene, who read early drafts and were encouraging. Jessica Albert, who did our super-cute cover. My friends, who said go-go-go from the beginning, with a special shout-out to Nadine Silverthorne, without whom there would, literally, be no book. And work for giving me the okay.

Anyhow. I’m excited. And terrified. But thrilled to be continuing the indie spirit of our family, from my rock ‘n’ roll husband, who has played independent music for over two decades now. So, we’ll see how it all goes… publishing a book kind of like you would a blog–I like it, I think?

And P.S. The name of our company, Farringdon Road, comes from my British great-great-grandfather, who was a publisher in London–it was his place of business, sort of (we changed the “Street” to “Road” because we liked it better).

Funny, I didn’t even know this photo existed until this past summer, when my aunt showed it to me. There’s my grandmother, in the top-right corner, standing beside her mother, and beside my great-uncle, who was a member of the Canadian Navy (I think). The caption on the back says that it’s D-Day, June 1944–and I am nowhere, not remotely alive, but that’s okay.

That my grandmother had a life, an entire world away, before she came to Canada as a war bride and become, as I knew her, my Nanny, intrigues me. It’s a research project, to find out more, more, more about my grandmother’s life. I remember more of her, because she was alive, with me, for longer than my mother, but she’s no less enigmatic, because so many questions I have remain unanswered. Her’s was a hard life, one of supporting tragedy, of having lived through the bombs, and the Blitz, and of ushering in new life (my aunt!) in the wake of all that blew up, oh, those Boomers. What was to come? Losing herself to colon cancer, that runs in our family, her son to follow a decade later, losing her middle child to the accident, like we all did, widowhood, and raising her grandchildren as much as was necessary–and that’s the part that I feel like I can tackle now.

I did not know her in this photo, but I want to. I want to ask her what it was like to be in London during the war. What it must have been to go to work at fourteen, when she really wanted to stay in school. What it was to meet my grandfather, and to see your life in that first blush of romance, to spend all that time with someone that maybe you shouldn’t have been with, to be an only child, to be British, and then staunchly Canadian. To be private, to have lived a life inside yourself, and so responsible, even if life gets beyond you. These are all my questions. These are all moments that I wish I could go back and ask about.

My favourite memory of my grandmother, and there are so many, are of her playing invisible snap with some friends of mine from high school. Of her holding court over a crazy pile of teenagers in the backyard of our house on Chaumont Cresent, where we lived in Mississauga. The first time I had a drink (peach schnapps, I do not recommend it). The first of many times my house was invaded by piles of teenagers and, still, my grandmother had a spirit and a presence about all of it–letting me find my way, enjoying my friends, enjoying herself. Another moment in time: my head in her lap as she ran through family history with me, noting cousins, aunts, uncles. I still have the piece of paper where we mapped it all out. Since then, I’ve gone through a half-dozen more generations, tracing as far back as I can to somehow reach deep down and figure out who I am. I’m not there yet.

In that moment, right before she died, wearing an oxygen mask, and settled in her bed, I wanted to shout out a list of everything she saved me from when she stepped in during the first tumultuous years after my mother’s accident. She saved me, most of all, from myself. She gave me her spirit of adventure, and her tenacity. She cut my hair, and loved me fiercely, but quietly. She was firm, but strong, and had character that came from someplace I would never understand. She made my clothes, and tried to teach me how to knit, backwards, because I’m left-handed, and left behind a space that aches when it’s sunny, in particular, at the cottage, a place she loved.

No special anniversary to celebrate. No giant, sweeping epic. A few secrets, I’m sure. It’s again, more of the everyday that I miss. And that’s the rub, that’s the intensity of losing so many people that you love. You can’t appreciate the small moments, in detail, because they’re forgettable. And that’s the way it should be. You can’t climb back through time, because it’s impossible. You can’t remember everything. But there are moments when I wish I could slip into the photograph, and stand beside my grandmother, wear my own pinny, wave a flag, and shout out: “I was here. You were here. And I love you, desperately.”

Picture the moment before a pandemic–what might that look like–people in everyday situations going about their everyday lives. Some are at the theatre. Some are walking home from work. Some are on a plane going somewhere. Coming home from somewhere. Stuck somewhere. This is the premise that opens Station Eleven, Emily St. John Mandel’s captivating novel. In the instant before the world collapses, one man falls down on stage–a renown and infamous actor, Arthur Leander–dead from an apparent heart attack. A young man, training to be a paramedic, hops up on stage to try and save him. He can’t. A young girl in the production of King Lear with him is deeply, profoundly affected by not only his death, but her association with the play itself. An ex-wife a world away who hears the news, doesn’t quite know what to do with it. And what Mandel has done here, sits with me, profoundly–because she has paused on the very moments before a calamity, and allowed her characters to stew in an everyday tragedy. Here’s the mark, the one event that would have scarred your life had it gone on as it should; instead, it becomes the punctuation, an ellipsis, that melts into a much larger event–the end of the world, essentially. And that to me is some smart, smart storytelling.

The Georgian Flu, an extreme case of a type of avian flu, hits the world and within a few weeks 90% (or some crazy number, no one really knows exactly how many) of the world’s population is dead. And with any pandemic, the life that’s left behind is forever “after,” so much so that the years are recalibrated as “Year One,” “Year Two,” etc., after the worst has passed.

Many of the characters in Station Eleven are artists, the members of the Traveling Symphony that roam a mostly safe route to perform, as a troupe would have in the days theatre first evolved, from place to place, looking for an audience. They are storytellers, hunter-gatherers of culture, roaming their way across a civilization that has lost everything. For me, while the threat of other people was always ever-present, it never really approached Walking Dead territory, where every human being puts up a kill or be killed kind of fight. This isn’t a post-apocalyptic situation that I’m used to–there’s Shakespeare in this world. There’s Bach and a museum, and a thread of the “before” in ways that feel as if Mandel means to point out that art is important. That said, the world isn’t without its dangers, and when members of their troupe go missing after engaging with a particularly fanatical prophet, it becomes apparent that the skills of the road, the necessary parts of survival, are as bare and animalistic as one would imagine.

So there are survivors, and there are victims. There is magic and there is brutality. There is humanity and there is insanity in this new world post-flu. And overall, I thoroughly enjoyed reading this book–I loved Arthur’s flawed character, and how, even in death, his presence haunts the entire book. I really liked the Traveling Symphony and their wandering band of actors and musicians. I even, truly, appreciated the ending of the novel, which I won’t spoil here for obvious reasons.

Still, I’ve been ruined by post-apocalyptic situations. Mainly, I’ve been ruined by Battlestar Galactica. I know. That might be the strangest sentence I’ve ever written in a book review before. But stay with me–here’s what I think. The nature of the attack on humanity was different, alien, in fact, and the humans were stranded on a small fleet of vehicles up in space–but they managed to keep civilization somewhat in tact because there was government. And that’s, I know, not Mandel’s point–she’s more focused on individuals, and not what a country would do, but that’s where the book fell down for me, ever-so slightly. That in all the years, and all of the small civilizations that would have sprung up, there would have been some effort to at least locate survivors of government, to keep something at least barely organized, in communication–and that the whole world essentially stops around a band of what feels like to me, the least likely to survive, felt a bit contrived.

I’m probably not expressing myself clearly–so I’ll stop there. It’s a good book. Highly deserving of all its praise and accolades, and one I am so pleased I read this year, when reading has been more of a challenge for me than any other time in my life.

The last few months of my reading life have been bereft of a key ingredient: actual reading. I was having a hard time finding books, reading them, and finishing them. Not sure if I’ve found my way. Books have been the one constant in my life and, yet, I have so little time for reading. Caroline Adderson’s wonderful Ellen in Pieces put a spring in my step, and not just because it’s the first book in a long time that I’ve read cover-to-cover in a super-short period of time. It’s the perfect kind of book for a weekend afternoon of reading when your kid is ensconced in watching some Disney movie you’ve already listened to a million times. You will fall into this book and feel at various moments that, for a woman of a certain age, living a certain life, with or without children, Adderson has seen right into your life.

Forgive me for allowing that the “pieces” of the title refer to the book’s non-linear format. It slips back and forth through time and up and down different points of view. It’s disconcerting at moments, not because the book doesn’t make sense or the parts beyond the novel’s central character, Ellen, are lacking, but simply because I loved that character so much I resented those other voices, the other perspectives. But no one lives their life in a vacuum, and when you hear about Ellen from her best friends, from her cad of an ex-husband, from her young lover, from her children, it adds layers upon layers to a life already rich with mistakes, misgivings, happiness, and wild abandon.

And I’m taking lessons from reading The Empathy Exams, which is another book that I managed to actually finish these days–polar opposite to a book of fiction written in Canada–but there’s a central thesis in one of Jamison’s essays that touches upon the state of “female pain.” It’s a very worthwhile essay to contemplate, for many reasons, not the least of which is an insistence, ever so slight, that despite the tropes around the idea of women in pain, these kinds of stories exist, they are our stories, and we should claim them. I am paraphrasing, badly, but I was thinking about this, desperately, over the last couple weeks, and found that pain resonates throughout Ellen in Pieces, whether it’s the pain of your own broken dreams, of broken relationships, of failed friendships, of mother-daughter bonds–really, simply, of life itself.

Novels about women who have breast cancer are a dime a dozen. I can think of a few off the top of my head that made me want to punch a wall for how obviously they were manipulating both the idea of loss and the illness itself. I can think of one other book that I’ve read in recent memory where illness wasn’t a device but a wonderful, necessary part of the story (Lionel Shriver’s So Much For That). Let’s put the SPOILER tag in here now… Here, Ellen’s breast cancer doesn’t feel manipulative. It’s not maudlin, and it’s not melodramatic. But what’s also interesting is that is the moment that Adderson skips Ellen’s point of view and begins to tell the story from the perspective of the other characters. I missed Ellen through the second half of the book. I missed her raw, angry, and sometimes unforgiving voice. I also missed her energy, her motion, and her voice. She’s a great character, and I wished, in a way, that Adderson had at least continued to show us her own thoughts during her illness. But then maybe I’d be missing the point. Because what her death allowed was the rejuvenation of so many people in her life, her eldest daughter in particular; and it stopped the book from turning me completely into a puddle. There are many voices in this book, each crowding to the surface to show ordinary life at its most extraordinary. Still, the true heralding success of this novel, for me anyway, has to be the author’s voice–it’s rich, symphonic even, and had me from the first page. It’s a rare feat these days, finding a book that can cut through my exhaustion, my own trials and tribulations of being a middle-aged mum, and bring me out the other side sad that it’s over because I’ll have to return to my seemingly never-ending unreading-reading state.

The in-between nature of the last few weeks has done a bit of a number on us. We had a bit of a scary time with our attached-to-us-neighbours, which resulted in us having to call the police, which is the last thing on earth one wants to do with attached-to-you-neighbours. The situation has calmed down now, and the panic has started to subside. My bike is away for the winter, so I don’t have that outlet, I’m barely reading these days, so my brain feels a little mushy, and I could always be eating better, so you know the 3PM sugar cravings are just about doing me in. Still, I wasn’t prepared, like so many people in Toronto, for the absolute onslaught of winter. Freezing temperatures, an icy-cold walk home from the subway, big coats, hats, mittens–today I wore sneakers and said f*ck it to the boots. I’m just not ready yet.

But you can’t avoid the weather, just like you can’t avoid the truth of your own body. Blasting you in the face like a snowstorm in January-November, that’s what my roots were, a meditation in how my genes betrayed me, yet again, sapping all of the colour from my hair starting when I was twenty. So, I’ve decided, like wearing my sneakers in the winter, to f*ck it, and let my hair go grey. There were parts of my hair that had turned a greenish tinge from too much colour, from trying to hold the colour in, and I’ve given up paying a bananas amount of money I don’t have at the moment to keep myself groomed, which I was never truly successful at anyway. My mother’s hair turned grey when she was young, really young–in the above picture, she’s thirty-four–this is the summer, I think, just before the accident (it might be the one just before that, too). She could be thirty-three, if it’s the year before the accident. I’m not sure. And that’s okay. The timeline isn’t important any more. She, too, battled the grey, henna, hair dye, perms, you name it, my mother tried it. It was a different time. It’s a different time now, with so many women suspended in terms of their aging by being able to keep their hair in colour instead of black and white. By the time of her advanced stay in the hospital, toward the end of the second decade, her hair had turned white, so white it looked like down, and it was a beautiful colour. So like my grandmother’s, and I think if mine turns out half as nice, I can live with it for the next forty years I’m on this earth.

So, we’re I’m in the in-between stage, between giving up the ghost of my youthful looks and embracing my age. I’m in the middle of so many things these days. Waiting for the hammer to drop at work, maybe it will, maybe it won’t. Waiting for a big project I’ve been working on to drop, which I hope it will in December. Waiting for our neighbours to act bananas again. Waiting for the good weather to return and waiting to accept winter on its own terms. Waiting. And so much of my feelings around my mother, and what happened to her, and what happened to us as a result was about being in between, too. She was in between life and death, we were in between mourning and acceptance. She suffered, and we felt guilt. Those are complex emotions that are hard to explain to anyone who hasn’t been in the situation.

The theme of being in-between has, haunted me–I don’t really want to use that word because it implies a sadness, an echo of malcontent, that I don’t think is accurate. Being blessed with the in between has allowed me, after much therapy, to be able to see around the edges. Without the sadness, and the heartache, and the simply hard bits of my life, I would have no context for the rest. And I crave context. It’s what allows me to write, and to wonder about the world, and to feel empathy–a most important aspect of emotional life.

My book club has been reading Leslie Jamison’s The Empathy Exams. It’s not a book that I would have ever come to without my ever-generous, ever-brilliant Vicious Circle. And I am finding so much in it, it’s a rich study, both because of Jamison’s writing, but also of her particular perspective, of her time, of her place, and how she relates to her life. She says, in an essay called “In Defense of Saccharin(e)”: “But why is it that my memories offer me back to myself in my most trivial moments? Why do I hunger for significant barometers but find myself tethered to banality instead.”

Here is my in-between. I am writing a post about being vain and letting my hair go grey. It’s banal. It’s not particularly saccharine, but I could inflict more of that within my post if I tried. But this toss and turn, and back and forth, and up and down–these are my memories at the moment. I’m reaching back for the everyday, to be tethered to the banality of the life I lived when my mother was alive, and I can’t get there. I find myself, raking back through my tired brain, and come up against the very happy or the very sad. The moment when I cut my bangs way too short (and all by myself) in grade eight because I was babysitting for the Andersons and was kind of bored. How my mother laughed when they dried and were about eighteen different lengths. How the principal made me take off my hat until he saw what I had done, and then let me wear it in school because it was so bad. How my mother laughed at me, giant, gaping, huge, laughter. And I mortified I was, but I was always doing stuff like this–half-sewing a skirt and wearing it to school anyway, threads trailing along down my legs, my seamstress mother and grandmother horrified, I’m certain in the wings. I have always been utterly myself. I’m sure I was born this way–barreling through life–through my own trivial moments hoping that they’ll own themselves up to me in a way that I’ll remember. Because there are moments that I can’t bare not to remember her. There are moments when I wish I had more than the memories I have. Where I wish, with everything, to ask her how I learned to read or what I was like when I was small, and was I anything like my boy who is so open it makes my heart ache.

So yes, Leslie Jamison, I remember the banal because my life was so boring–it was there and it was happy and I was a kid and I was awkward and silly and bright and loved and loved and loved. What I don’t want to remember, too, lingers on, and on: the hospital, and the deep welt of sadness that defined my life, and how it affected my brain, and my being and who I became. The in-between girl.

Still, even with all of this on my mind lately, wanting to write more and more about my mother and about these experiences, there are moments when I simply can’t help myself. We were coming home from the Santa Claus parade last weekend. After the cold, but before the snow, and there was a giant pile of leaves in Dufferin Grove Park, and I wanted to lie in them SO BADLY. So my husband took a picture and it was a lovely day. The small parts adding up, a bit of extra sleep, homemade waffles for breakfast, a parade, a long walk home, and the fading light of a fall afternoon. I was happy. But I’m sure I’m not at all making sense. I’m sure that’s okay, too. I’ll walk home in the cold, in my sneakers, ride the bike in my basement, work some of it out, and start again tomorrow.

Since our boy’s been in full-time school, we’re all getting used to a new routine. Lunches away from home, half-eaten, yoghurt spilled all over his lunchbag–I never thought we’d need more than one. We (and by “we” I mean “I”) bought a fancy “bento”-style container-thingy to go in said lunchbag without really thinking about it. The issue? He can’t open it. So, not really going to work when it comes down to sending it to school with him. My husband is working these next couple weeks, and our lives sort of grind to a halt–there’s simply never enough time to do anything, and September is a sad month anyway. For all the new beginnings, I’m constantly reminded of endings as well, of the simple punctuation of life itself, and how we are tethered to one another by these invisible forces, family as gravity. It’s a metaphor I’ve been thinking about for a while of how untethered I felt after I lost my mother the first time.

Trying to explain it to myself, or to understand it, I kept coming back to the idea of an astronaut in space–left adrift to float until they run out of oxygen without gravity to hold them in place. And that’s what it’s like when you lose your mother. You’re adrift without any context of yourself in the world. Or, at least I was, because I had a wonderful childhood with two parents who loved me, who loved each other, and an extended family that worked hard to bring us up as one big unit. And then our lives began to be punctuated by tragedy, we are not alone in unexpected deaths–but, at the time, it felt like we were cursed. My uncle died in a car accident, a drunk driver hit he and my aunt. Two of my grandparents died while I was in middle grade. And then my mother’s car accident that left her hospitalized with a serious brain injury for decades. And when her body had finally had enough of the appalling life it was subjected to in a long-term care facility, she died on a beautiful September day. It’s not often that people go through losing their mother twice–once to an injury she would never recover from, and the second time as a release from the burden of life. Each time was different, but still, the feeling of being adrift resounded through me.

For years I’ve contemplated how to write or what to say about my mother. How to remember her. What I remember of her, her life, and of who she might have been. I have stories, but memory is a funny–I will remember some incident, a flutter in my mind, and talk to my brother, who’ll have no recollection of that day, that event. Stories cannot cobble together a life that was meant to be lived. They are paved stones in a giant field placed too far apart to truly make any sense. There it comes again, that thought, the idea of my life being that astronaut in space–set adrift when gravity fails to hold me down. The moment my mother had her accident, I lost all context for my life, and I am a person who needs context and clarity.

In the photo attached, we were at a wedding. The youngest son of the family that owned the cottage next to ours was getting married. We drove to Pennsylvania for the wedding. I was thirteen so my mother must be thirty-four in this photograph. She made what she’s wearing, and she made my dress too. My mother inherited my grandmother’s ability as a seamstress. It came naturally to her, from what my aunt has told me–she sewed from a young age and I can appreciate the skill, seeing as it wasn’t necessarily passed down to me. The ring she’s wearing, an amethyst, is too small for my fingers, even though I still wear it sometimes–it fits on my right ring finger, just barely. She’s wearing a gold chain with an Aquarius symbol on it, it’s the one you can’t really see–she wore it all the time. I wear it all the time, too, when I need to feel lucky. The blue eyeshadow she’s wearing is actually from an eye pencil. I watched her apply it time and time again sitting on the toilet in the bathroom as she did her makeup. Watching, as girls do, their mothers get ready to go out to party. In the weeks before the accident, the pencil, called Robin’s Egg Blue, ran out, and when my mother threw it into the garbage she said, “Well what am I going to do now?”

Her laughter was huge, roiling over like a pot at full boil, I can still hear it if I concentrate hard enough. She wore a musky perfume that I still recognize. A woman, years ago when I first started working in Toronto walked by me wearing it, and I followed her for blocks trying to get up the nerve to ask her what it was, because I don’t remember the bottle, only the smell. These fragments aren’t enough to pull me back down to earth. All those years my mother spent in the hospital, her life was unbearable–as much to her as it was for us, bed-ridden for the most part, her short-term memory eradicated, her body bashed up and never to recover. She faded and faded and faded, and even as I grew older, she never failed to recognize me, or my brother. We were tethered to her, as were her siblings, her mother, while she was alive, my father. And the guilt crushed me. And when she died, it was as if that floated away in the most positive sense.

All of this is surfacing today because I drove by the intersection of the hospital on Saturday for the first time since she died. I didn’t even realize, really, where I was going until I was there and saw the signs. I was on my way out of the city to drop my son off at his grandfather’s. A friend and I were going to Guelph junk shopping for the afternoon. The sun was shining. The weather was perfect for a day of hunting for treasures. And as I drove by the sign for the hospital, I said, “Oh, that’s the hospital where my mother died.” We did a quick u-turn (traffic) and sped off in another direction, and it wasn’t until we were stuck in another traffic jam (it was that kind of day) where I got to thinking about the fact that it was September, and my mother had died in September, and I hadn’t been back up to the hospital where she died or the hospital where she lived since then.

There are concrete places: she died at Humber River Hospital. There are concrete dates: she died on September 8th, 2008. But the rest is a blur. I remember when the hospital called to tell me that my mother had a serious infection, and that she had been transported from West Park to the closest hospital. My husband and I went to see her the day they called, and spent the next few days watching and waiting as she grew progressively worse, her lungs wet, her breath, raspy, until the very last moments when her body started to shut down, her limbs turning waxy, and in the very moment when she died, how she opened her beautiful, beautiful, beautiful eyes up wide and looked at us–in that moment, she was herself for the first time in decades. As if she knew it was time, and we would be okay, and it was okay for her to pass on–I will never forget the haunting wonder of that moment. I will never forget that moment–it was a gift of clarity for the years and years she was trapped by her injuries. It was a moment of freedom, when being set adrift was more then just the loss it represented, it was an end. Of course, there’s a finality to death. There’s an explanation and an understanding that’s easier to put words around. For years, I would say that I “lost” my mother when I was fourteen. Because I did. The accident happened two weeks before I was about to start high school, and while my brother and I were both away at different camps. But when my mother died in September 2008, the loss was different. We had been living with her dying for over two decades at that point. We had come to a sort of anxious peace about the state of her life, and where ours needed to continue. We visited the hospital as often as we could. Those days were unbearably hard. It’s an immediately sad and overwhelmingly clinical place–and I’d be reeling, in tears, for days around any visit depending on how she was. Nothing of how I felt could come close to what my mother must have been going through in that stale room day after day, what she knew, or how time passed for her. And still, she laughed, it wasn’t the same laughter, but she still laughed at times, at jokes, and she adored my husband, even though she wasn’t quite sure who he was.

Six years have passed. And in that time, I’ve had a child, moved forward in my career, written, read, travelled, loved, and been cocooned by my own family unit. Still, there’s an urge to roam through the memories of my aunt, her sister, of my father, her husband. For a while now, I’ve wanted to sit down and record everything that they might remember. Hope that it’ll give me a fuller picture of who my mother was out of context of our relationship. The space she occupied in my life is undefinable–I understand that now after having my own child. He’s his own person, but there’s not much space between he and I, especially now because he’s still so small. And after all these years, I’ve finally found some context outside of being the girl who lost her mother so tragically. Yes, that loss defines me in ways that I find hard to articulate. But I have also gained so much: a strength and understanding about tragedy and what it does to your brain; an appreciation for the family my husband and I have created; how I value loyalty, and how much I held on to my husband on those days when we visited the hospital; and how lucky I was to have my mother for those fourteen years. She raised me well in that time. She raised me into the person I am, and that is concrete–I have my feet on the ground, pulled down by her gravity, and there’s something to be said for that kind of invisible strength.

September always means new beginnings for me. I can’t help but think of it as the real “new” year–school starts, the weather changes, we are knee-deep in real life that summer always provides an escape from. And yet, the last few years, September was more of the same, our same routine, a couple of days of daycare, more days off, race around on the weekend trying to get things done, and wham! it’s Christmas.

This September, I’m meditative. I’m finally, after over four years, off the prednisone. Keep in mind it’s only been a week, but still, it’s a week without that awful drug. I’m feeling it. My bones are achy, and I’m exhausted, and then it hit me. This is life with the disease. It’s not so much a complaint, but a full and complete acceptance that the good health I had before I had my son is gone forever. I can muddle through my life, I’ve been doing it for decades. But do I want to? Of course I’m not suggesting otherwise. In the sense that I’m not about to do anything dramatic. There’s a part of life with a disease that goes unrecognized in a way. To the outside world, I look like a middle-aged mum–my hair’s greying, I’ve got extra pounds in places where there used to be smooth skin, and, more often than not, I’m with our boy. That changes the perspective. The more people you meet later in life, how you need to keep telling the stories, how you need to keep explaining.

I was at a party the other night. I rarely drink, and I rarely go to parties, but this was a work event, and it was a lot of fun. And, inevitably, some question comes up, something about having another baby (too old! too sick) that I have to explain in a couple of short sentences the almost-life-almost-death way that I exist every single day. I’m not about to keel over. The disease is in remission for the most part, but the symptoms, they remain. The exhaustion is the hardest part. The feeling old, now. The constant nagging of my lungs when I try to bike up a hill. A lot of it is being out of shape and being overweight, but a lot of it is disease too. I’m fighting all of the battles of society these days, but with a backpack full of other crap on my back. And that is life with a disease.

So. Enough complaining, whining, whinging. Whatever. I’ve made a lot of new year’s revolutions on the blog. I’ve made a lot of sentences that start with, “I’m going to change this…” and start small. And still nothing sticks. Nothing has come close to dropping an appendix and becoming the healthiest I’ve been in a decade. I don’t have another appendix. I don’t have a lot of energy. I don’t even know how to change. Except. I kind of do. I know that if I have a good pattern, I’ll continue with it–it’s not much, but flossing every day has now become a habit. Biking is hard but I’ve managed it most of the summer with the exception of having a rotten cold for a couple of weeks. But eating, that’s the hardest part to fix–I have some terrible habits, especially with breakfast, and I’m not sure how to fix them. That is, I’m not sure if I’ve got the will power to do it. It comes down to that, when you’re so tired, so so so so tired, making any kind of change is akin to biking up the biggest hill in your neighbourhood on your highest gear. I just can’t do it.

I said I would stop complaining. And I spent a whole other paragraph, well, complaining.

And so I am, here. Decades into living with a disease. At this point in my life, I’ve spent longer being sick than I’ve ever been healthy. I’ve spent more time taking medicine than not. And so you would think I would have, by this point in my life, come to terms with living with the disease. Except, I haven’t. Now I’m taking more medicine than ever, and it’s morning and night, every day, every single day until the rest of my life. And it will be now more medicine instead of less, and unless I make some changes, it will always be more medicine instead of less.

I was feeling profound when I started this post. Feeling like the experience in having the disease for so long must mean something. The search for meaning in my ill health or the struggle to overcome it all, there must be a point. Yet, the existential in me understands there’s no overriding point to any of it. It’s random, and fool-hardy of me to think otherwise. The disease is not something to be filed away like my old tax receipts. It’s something to be considered.

This month is the ten year anniversary of having my hip replaced. It’s also the ten year anniversary of blogging, well, almost–according to the blog, I actually started on February 10th, 2005–but all that time blurs for me, because the major changes in my life kicked off with my hip replacement surgery. I left my job as an Executive Producer for television websites in the fall, had my hip replaced, moved into my house, got fired, had a nervous breakdown, healed, sought therapy, survived, and found my career. Here’s the first post:

Thursday, February 10, 2005: Happy Freaking New Year!

What a start to the new year! Let’s see — I had hip replacement surgery last September, so on January 1st I was still learning to walk. Then, I went back to work after being off on sick leave (you heard me: sick leave) to find out they had reorganized me right out of a job. Oh, and to add to the stress we (me and my Rock and Roll Boyfriend) had just bought a house. Of course, being a Rock and Roll Boyfriend, means he doesn’t have a steady job. In what’s supposed to be a time of renewal and regeneration, good luck and New Year’s resolutions, I’m standing on the side of the road worried I’m going to lose my new house because I’ve lost my big, fancy job and, well, frankly I’m having trouble standing up…because I just got my hip replaced.

So now, I’m temping for $13 bucks an hour trying to find a new job. Do you know anyone that’s hiring?

 

And, within a month or two of that post, I was working at Random House, which was a wonderful experience, being mentored by someone I still like and admire very much, and for two full years I was happy just to be in publishing (but not with the commute to Mississauga) and ended up at HarperCollins Canada, where I’ve been ever since. And in that time, I’ve almost lost my life twice–once when my appendix ruptured and no one could figure out what was going on, and then when I had my son. In the decade in between having my tragic hip be replaced, I have found my voice, written one unpublishable book (never knew I could write a novel, that’s something) and finished another that I like very much. I’ve written a bunch of abridgements, done some interesting freelance, become a teacher, have a respectable career, and a marriage, and a family.

I’ve done all of this with the disease just there, lurking, and poking, and testing, and falling up, and falling down. I’ve done it all through blood tests, and doctor’s visits, and trauma, and regular check ups. I’ve seen Paris, and London, and Ireland, and Cuba, and Mexico, and many places in Canada. I’ve seen bands I love and bands I’ve hated. I’ve read book after book and reveled in the power of the written word. I’ve blogged and then forgotten to blog. I’ve been swept away in motherhood and all it brings to your life (and takes away). I’ve celebrated anniversaries and birthdays and holidays.

And the disease has taken none of life away from me. Maybe that’s my point. Maybe I had to write it all out, everything I’ve thought about, and everything that’s given me pause over the last few weeks as I celebrate a decade being a bionic girl. I have this life. I have this life. I have this life. And it’s a gift even if it means the medicine, and the doctor’s visits, and the constant hum of the disease strumming under my bones and in my blood. I still have this life. I have a life. And I have given a life to someone else. Many things that weren’t possible on the ill-fated day the specialist came into the hospital room to visit a teenaged girl who had lived very little up until then, but been through so much. They never told me how hard it would be. Perhaps that’s a blessing in disguise. They never talked about the side effects and the ugliness inherent in the medication. And that’s a blessing too.

But I had to live with the disease to learn about how to live with a disease. In short, I had to live. And that’s okay. So if some things change this September, that’s good. If I can finally be off prednisone for a while, that’s a gift. And if I can finally understand that the point of the disease is that there’s no point to it, really, but that I’m still living, well, here’s to the next decade with my tragic hip. Here’s to another ten years of being bionic. Here’s to it.

 

The last few weeks have been a whirlwind of vacations, driving, more vacations, and more driving. We spent the weekend in Montreal for my birthday, the start of a two-week escape from work, the first proper vacation I’d had in eighteen months. The break was welcome, and needed, and it went by far too fast. We were at the cottage for a good portion of it, our original plans, to go to Disney, were scuttled as our traveling partner-family replaced their kitchen this year, and the budget didn’t stretch to both. It turned out to be just fine, three days is about as much hotel living as our boy can handle, and our style of holiday–walk a city until our feet feel like they might fall off–is a bit much for a 3 and 3/4-year old. The city was nice, we stayed right in old Montreal, and swam in the pool every day. We ate at a couple of good places, and ordered really terrible pizza one night. But, mainly, we were not at home, which is sometimes as much of a vacation as one needs.

This September is the start of many things: our boy begins school; my RRHB begins his tenure as a complete SAHD; and I’m working on a new side project/venture that’s captured my attention and excitement. The days are long, and the nights too short this summer, just the way you like them, for fall, being just around the corner, will be a shock to everyone’s system. Our boy still has a hard time with daycare drop-off. I don’t know how he’ll find his way in terms of keeping track of his lunchbox, or all the many other “big kid” things he’ll need to do after Labour Day. There are still delicious baby-ish parts of him–chubby knuckles and malapropisms–that I adore and want never to change, but combing through photos, I see so many changes, big-kid haircuts, and high jumps, excluded.

There are moments when I still marvel that he’s in the world. My one boy. This little bit of himself that swims like a fish and has discovered the joy of a popsicle. Visits from cousins of all ages have happened at the lake, and it’s been nice for him, to have compatriots to roam around with–he’s still a little too little to go off wandering on his own, which he is prone to do, but I like that he’s growing up where I grew up, a consistency of place even if the trees are different, and the little island no longer has so many snakes. The rugged countryside of the provincial parks we’ve visited over the summer–Ferris, Petroglyphs–makes me romantic… in the Byron-Coleridge sense. Wanting to sit on soft moss and breath deeply while slapping a mosquito or two, or seventeen. The water has been spectacular, and swimming reminds me of the simple joy of a summer vacation. It gets hot. You jump in. You’re feeling a little droopy. You jump in. Rinse. Repeat. Dry off. Jump in again.

When you spend your days away from the constant movement forward, the never-ending stretch to feel caught up, and slow down–even with a preschooler, a house full of cousins, and kids, and more kids, there’s a calmness that descends. It’s more about not having to be somewhere for a very specific time. That checking email was something I did because I felt like it, and not because I had to. That being on vacation meant being myself–so I read, I swam, I laughed, I stressed, as I do, but I also soaked up the sunshine, and slept, well, I slept better. I still can’t find the energy to read a book if my life depended upon it. The couple I managed while on vacation were not literary, but more commercial reads, and it seems to be all I can manage at the moment. We’re reading James and the Giant Peach out loud at bedtime these days. The boy isn’t so impressed but I love it. I finished Landline, which was well-written but kind of silly. I read a novel that enraged me called Left Neglected because it felt like research jammed up in cliche, and now I’m just trying to stay afloat in terms of my book club books.

I am lost in my own thoughts these days. Finding it hard to get out a sentence, let alone two. I have wanted to post up some Facebook-style vacation updates like a fun picture from Montreal, accompanied by the “real” underlying statuses: “Great time with the family!” coupled with “Holy sh*t it took us nine hours to get here, and we’re about to kill each other, and whose idea was it to have just one bed for all three of us, and was it really necessary to walk all the way halfway across town for smoked meat when we could have taken a cab–but, hey! look at my smile.” The thing is–it’s hard to describe the moment; the being frustrated by the “travel” aspects of travel as much as being high on the same bits and pieces. The sheer beauty of a place different from that which you see every day. In the end, it’s okay that I didn’t get to travel too afar this time. I do miss hiking over the pond to Europe, as we used to do whenever we took two weeks off from work, and there are so many places where I want to go. But I also liked being at the cottage for such a long period of time. It was so hard to leave. We avoided it, stayed until the last possible moment, forgot something and had to head back, and now that I’m back in the city, I can’t explain what’s going on–it’s not dissatisfaction, really, it’s just a longing for those summers when I spent the entire two months there, and remembering why it was such a wonderful place to grow up.