A love story and a death story

Chapter 1: a love story

This love story has no beginning and no end. I don’t remember the first time I saw him. Those first few moments of encounter are all jumbled together now. It could have been that gig in the church. Or maybe that was just the first time I really noticed him- the tall, intimidating guitarist with the beautiful hair. I can’t remember officially the first time that I laid eyes on him, but I remember how it felt when I first heard his voice, when he mumbled his quiet hello; how beautiful his eyes were, and how much more those eyes had to say than his lips did. That’s where I’ll start my love story; with the world we’d know written behind his eyes.

The first time we really talked it was his birthday and we were at a grungy bar. He made some comment about the dirty couches and I thought it was dumb. But later, when I saw him sitting in a booth on his own I felt compelled to sit down beside him, and we started to talk. It was surprising how easy it was to talk to a person with whom I was sure I had very little in common. When he told me it was his birthday I tried to buy him a drink but he had none of that—he was buying. The first gift we ever exchanged on his birthday was for me, and that’s who J.J. was—the most giving person I have ever met. When I was leaving that night to go home he ran after me for my number. We saw each other a couple of times after that—at a party, and again, at a fiddle show that I played in. But I never expected him to call. In my experience guys were flaky, unaccountable and unreliable. But I did hear from him, shockingly. He was the one who actually called. And so our love story unraveled in a pattern of J.J. proving me wrong. I didn’t think he would call, I didn’t think he would show up, I didn’t think he would be the kind of guy who I could talk to for hours and still have more to say. Most significantly, I didn’t think he would be anything more than “right now.” “I don’t think we’re going get married or anything,” I remember telling a friend. Oh how I was wrong about that one.

Loving J.J. was my home. It was the safe place to rest at the end of the day. It was the space for me to be entirely myself without fear of judgment; the present and future woven into a warm blanket that I could wrap myself in when I needed comfort and calm. It was the easiest thing I’ve ever done; like walking downhill on a warm breezy day, or watching waves gently lap at the beach. He was the ocean and I was a thousand grains of sand being gently teased into the tide. I felt it pulling me in, until one day, the water was all around me. The thing about love is that you can fall into it quietly, but inevitably it yells for attention. And so one day, in a friend’s apartment in Vancouver I finally saw it. When I came home I told him, quietly, nervously, and as only J.J. would he replied, “Well that’s okay because I love you too.”

I’ve learned since that moment that, as cliché as it is, love is the strongest force in the world. It’s a current that sweeps you up and takes you with it and trying to fight it is exhausting. In the end all you can do is surrender. When I met J.J. I wasn’t looking for love. I wasn’t looking for anyone. I never grew up imagining my wedding day. I always figured I would be a mother but I never paid it much attention. I suppose I wanted those things, but I never needed them until him. My world shifted with him in it; moved from what it was to what it could be, and swiftly the tide pulled and brought us into our own family. I often look back and realize how quickly it all happened; how young I was when I married him and became a mother.

I don’t know if I believe in fate. At times now it seems like a concept made up by people who get what they want in life. After all, how could it be fated for a family to be broken, for a little girl to lose her dad and for a loving father to miss out on meeting his own baby. But other times, albeit with mistrust, I see it from a different angle: that I had just enough time. Enough time to learn what real love is. Enough time to learn how to share a life with someone. Enough time to gain a daughter who would be my savior through the pain to come. Enough time to give her a sister; a best friend to hold her hand through the uncertainties of life and to remind her that she’s never alone. No matter what, J.J. will never have had enough time. But, if fate exists, then we were fated to have enough time for these most significant things, and perhaps, for that, I can forgive the universe.

I remember one of the hardest moments in our relationship happened long before cancer did. The year after we got married I was moving to Paraguay for the summer to do my Master’s research. I had also recently been struggling with an injury that left me with chronic pain. I was afraid to be alone, a world away, in a place where I wouldn’t know where to go for help, and where I could only just get by in the local language. J.J. drove me to the airport the evening of my flight, and I sat in the car and just cried and cried. I didn’t know if I was going to be ok. And he sat with me while I cried, and listened to me spill out all of my fears. And then he walked me to security and watched me go through, promising to Skype with me when I arrived the next day. “I’ll see you tomorrow,” he told me as he sent me off. Those were the words that got me onto the plane.

 A good friend always tells me now, when I go to her in moments of weakness—uncertain of myself, or in doubt of my capabilities, scared that I’m not going to be okay, that J.J. has prepared me for this. It’s not something that I have fully understood. It’s hard for me to wrap my head around what exactly he has prepared me for. But when I think about the man he was, the person who loved me for ten years, who taught me how to love, how to fight fair, how to be strong when I felt frailest, then it suddenly makes sense. J.J. saw strength in me, he saw capability, and he saw a person who he believed was worth loving. Now, when I don’t trust my own judgment, or don’t believe in myself, I can trust him, like I always did, and believe in his belief in me. That’s why our love story has no ending; because I am the love that he had for me.

Carrying on without J.J. has been the hardest thing I’ve ever had to do. They say that grief is just love with nowhere to go, but for me it has felt like his death was a brick wall that my love has collided with every day since he died. It’s painful and, at times, crippling. But I think I’ve learned that I need to find a new road around. J.J. taught me to love generously, without hesitation. Our love story has taught me to be brave and bold; to hold on to what fills my heart and to try to let go of what burdens it. Our love story has taught me that vulnerability can come with great strength. Even after my heart has been broken I can still wear it on my sleeve. Because he loved me, of that I am not afraid.

Chapter 2: A death story

           

            His eyes were the first moment and his breath was the last. The short, labored inhales I had been listening to for days, becoming gritty gasps for air, the long pauses in between. The pattern was disturbing and wrong, but as I sat for hours with him in his palliative care room-his designated room to die in—my brain incorporated the foreign rhythm, and so when it stopped, so did time. I held my own breath as the world paused to affirm that yes, this truly was his end of life.

Before J.J. died I didn’t understand the magnitude of what death could be. People in my life had died; three grandparents whom I knew and loved. It hurt to lose them; I missed the time spent on Christmas mornings, summers at the cottage, winter visits in Florida. I recognized that our family was missing pieces, but I also knew that this was the natural course of life. We get old and we leave this world and it’s sad, but we expect it; we see it coming. Those deaths for me were not earth shattering. With J.J. I was the earth and his death was a meteor impact. In the flames of it all there were many deaths: my husband, my best friend, my partner, my co-parent, and much of myself. So much of myself that I didn’t recognize what was left over. The girl I’d grown up with was gone and I stared at the Widow in the mirror, the “W” tattooed on my forehead everywhere I went.

Those first few months after he died we were together again many times in my dreams. But most of those dream worlds were grotesque: aspects of our normal lives interwoven with the horrors of a cancerous death. He was always doomed in my sleep too- and most of the time he didn't understand. Only I knew and watched it happen. Just once he knew it; he had one day to spend with me and was anxious to find me the perfect ring because it would be his last gift to me; a memory that once I was loved by someone, and that he would've loved me forever if he could have. It was beautifully sweet and tragic and for the first time I felt a fleeting moment of closure; he knew, he accepted it, and he said his goodbye. All of those questions that continue to haunt me, for a night, dissipated in the knowledge that he understood, and surrendered to what was going to happen. How I wish I could cling to that dream world for some sense of solace that, in those last days, he was calm and could make his peace. How I wish I could paint over the picture stained into my imagination of him calling out, reaching for me, trapped in his head and unable to make his body work, to tell me all of his fears, to seek comfort, and to gift me with some last words of love or hope for our daughters and I. I’m not sure that I will ever make peace with that agonizing silence, just the sound of those gasping breaths going in and out, in and out, in and then out...and then nothing. 

       Gradually he has visited me less in my dreams. In sync with my awake life, he is slowly stepping back, giving me space to survey the landscape of my new life that goes on without him. To navigate the shape of it and what pieces of my old life I can take along. It is a sad and liberating feeling to let him step away. There is only so long you can walk with one hand in the other world before it either pulls you in or pushes you out. Now when I reach for his hand in the darkness he's no longer beside me but a few feet behind; lingering and nudging me forward, away from him, at the same time. I imagine myself on a boat in between two shores. He stands on the sandy beach behind me in the twilight, and at the shore ahead is the sunshine. My eyes are adjusting to the light and finally, albeit apprehensively, I am paddling toward the morning.

      There are, however, moments where the shadows seem to catch up with me. A reminder of that long night. Often unexpected, these moments creep up, sneak around and pop up in front of me, blocking my way and forcing me to watch, to listen, and to remember that old fear of the dark. And then in a flash I'm at the nurses' station, talking about hospice. Or signing a DNR, or being confronted by the kind, sympathetic palliative care nurse as she tells me, don't go home for a change of clothes--he'll be gone before you get back. And then I am in the room with him again; he exhales, and I wait...and I wait...and there's nothing. I'm not sure if I'll ever be able to put into words what it's like to watch death happen. It's unimaginable unless you've been there--the feelings indescribable. There are no adjectives to describe how a person is there, and a moment later, gone. How the heart you've rested your head against every night for 10 years suddenly isn't beating anymore; how the hand that you hold becomes abruptly heavy. That is a moment I hold intimately within myself and it is that moment that keeps those shadows at my back, because I'm learning to focus on the road ahead but for now at least they're still at arm’s length. The death sits there, waiting for a long drive or a quiet room to step out and remind me that forever it will have happened.

I often wonder if those images will ever go away. Like falling on gravel, what if the death is that little stone that gets buried in the wound. What if you can't wash it out? Your skin starts to heal but around it, eventually sealing it in. That's risky, isn't it? That little stone could at any point cause an infection and make you sick. In those moments when the death sneaks into my mind I worry that I'll never be able to get it out of me. What will become of me if I can't wash out that stone?

      What seems hardest for me to let go about JJ's death are all of the things we didn't get to say. In those last weeks he was sleeping. I couldn't seem to wake him, and it happened so suddenly that we didn't recognize it was the beginning of the end until he was somewhere far away, unable to speak or move or tell me anything. We never got to make peace together, with the death to come. And so that little stone sits there, in the wound that I cut open when I fell into that pit of grief and it's what I carry with me as I climb out.

          Now, a year and a half later, I have been piecing my life back together in ways that I never imagined I could. I quit my PhD for many reasons, but primarily because I had come to the realization that it gave me no joy. It was no longer my passion and the idea of remaining isolated, working at home in the house that J.J. would never again come home to was too dangerous, I knew, for my mental health. Suddenly that piece of paper was no longer worth so much anymore. So I began to volunteer at a refugee health centre because I needed to feel useful. I needed to find my new identity now that I could no longer identify as wife, partner, best friend. Eventually I accepted a research position at a mental health facility—the irony of which is not lost on me. I haven’t quite figured out why, after his death I chose to work in a hospital. When I think of the UHN in Toronto I feel sick. I can't even get off the subway at College or University Ave because I remember doing that, every day for 2 months, to see him as he was being bounced from ICU to ward, back to ICU, to palliative care. For the most part hospitals remind me of hope lost- so much so that I refused to set foot in one to give birth to Joy, and when I have had to sit with either of my children in a hospital room I’ve had to talk myself out of an automatic reaction of panic. Yet I walk into a different hospital every day, and my unit is one that sees end of life; some move from us to palliative care, some receive co-morbid terminal diagnoses, many are widowed. It is my paradox that I'm surrounded by the stories of others who are at, or have been close to, the end of life, when my story is the one I want to run away from. 

            Maybe there is some comfort in knowing that it didn’t just happen to me. Loss is an experience that I would never wish upon anyone, but it’s a reality for many people and when I know it, I feel a little less alone. Widowhood is a lonely road to walk at any point in life, but in losing my husband at the age of 28 I am one hell of an anomaly, and I have struggled with a sense of intense emotional isolation in this new reality because, as it should be, it is impossible for even the most empathetic of friends to identify with this experience. My blessing (in a terribly inappropriate sense of the word) is that I have gotten to know a few others like me who are walking the simultaneous path of young widowhood and sole parenthood. I have been able to bear my soul in quiet, intimate conversations and feel both understanding and solidarity. These are hands that have reached out to me in the darkness and helped to pull me through. I still reach for them, when the shadows come close, and find immense comfort to feel their fingers intertwine with mine.

            In this quiet chaos of my grief journey I often wonder what becomes of those of us who are forced to walk this path. What will become of me? I am left with another paradox—that I feel both fear and hope for my future. These conflicting emotions often rotate and trade places in a delicate dance in my mind and on any given day one can give way to the other. Hence, I write my love story and death story all at once; a story of hope and of hope lost, and this remains the reality that permeates my own imaginations of my future. I hope that I will find some aspects of life that I have lost, that I miss dearly. What scares me is not the risk inherent in hoping, in loving, or in imagining what could be; but that those are risks that maybe I’ll never get to take again. It’s the loss of potential that is my greatest fear. So like the love story, the death story has no end. I fear I will carry it with me, in some capacity, forever. That, I guess, is the burden of love; a burden I chose to accept when I handed over a piece of my heart that I knew I would never get back. Not quite whole anymore, it beats a little harder, trying to make up for that missing piece.