Let’s dance

If I could only have one record, this it it.

Not long ago, Susan and I spent the night playing old records. We got up to dance. Bowie’s Five Years came on. We held each other and swayed. Bowie’s voice was close, our bodies were close. The lyrics poured out: “we’ve got five years, that’s all we got, we’ve got five years,” and I could feel Susan tremble, crying in my arms. We hadn’t been a couple for much more than five years, and it was a beautifully tragic moment and there we were, dancing together.

One of my favourite photos of Susan.

I fell in love with Susan at a party at her friend’s place. It was near the end of June, 2012, and the promised pleasures that summer offers were beginning to pop up everywhere. It was a warm evening in an urban backyard with trees and plants and grass. I was only just meeting many of her friends that summer. Our exclusive dating was fairly recent and I didn’t really know anyone so I just played wallflower. I sipped from a bottle and watched. There were about a dozen people in the backyard, chatting and hanging out, as music drifted from the kitchen. I don’t recall the song, but someone turned it up and a couple of people started to dance. Susan watched them. I watched Susan. She started to move her hips, and her skirt swayed, while her long hair, draped over her neck, brushed across her back. As a filmmaker, I can recognise wonder and beauty in a moving image when I see it. And like most people when they are being watched, Susan sensed my gaze and turned my way. She caught me looking, but I didn’t make shy and I wasn’t going to look away. She continued to sway to the music, then she smiled at me. Susan has a million-dollar smile, but when I recall the moment, it’s her whole face, and especially her eyes locked to mine, that is the most vivid. And that was that. By the time she turned away I wasn’t the same.

As our campuses were situated downtown Susan and I would often meet on the corner near my school and walk somewhere to eat. If I happened to be early I could always see her coming, even at a distance. In a sea of people, her hair and head bopped from side to side, she had a bounce and a swing in her steps. If she wanted to rush along a little she would chassé for a moment. Lighter than air. And always smiling. I’d like to say the smile only came after she caught sight of me but that wasn’t the case. As for myself it was difficult to be anything but cheerful with that image coming toward me! I’d seen the same thing in the hallway at her school. Sometimes I’d stop by to see her, maybe bring her a coffee or something. And I’d wait by her office and catch her walking down the hall. Same dance, purposeful, happy, with speed and grace.

Susan at age 6?

As a child she had taken ballet lessons. She told me she was a dedicated pupil and had excellent form. She loved those classes. The one thing she wasn’t good at was remembering a series of steps. So in class she always made sure she had another student in front of her to follow. She recounted to me how at one recital she and her classmates had to dance across the stage to a choreographed sequence of steps. Susan, being the star student, was unexpectedly put at the front of the line. Her memory failed her, and without anyone going before her to follow she didn’t know the steps. She fumbled the recital, to the dismay of her teacher.

About two years ago, Susan informed me that she was going to take a ballet class. Okay, I said, not at all surprised. She told me she couldn’t decide between three different classes. One was a classical class, another was a floor class, and well I can’t recall what the other was. She couldn’t decide between them so she took all three. Susan went to her dance classes that winter, every evening, Monday to Thursday. Never missed a class. She’d practice pirouettes and other steps in the kitchen. I’d watch. She wore tights and a skirt most winter days so when she practiced she kind of looked like a ballerina. Sometimes I’d straighten my leg, point my toe, and try to turn. Humorous to say the least. Susan had great flexibility and strength. She could stand facing me, and lift one straightened leg off the ground and point her toes in my face. She was Bruce Lee. She would have made a hell of a prima ballerina, or kung-fu master!

Before Susan got sick, we were hanging out at her flat in NDG. I can’t recall the context of our conversation, but I think it had something to do with CBC radio theme songs. I mentioned how I always liked Bob Kerr’s radio show because he closed it off with Pachelbel’s canon. I found the version online and played it through some speakers in her kitchen. We embraced and danced a slow one. It was a simple dance, nothing much more than a junior high school embrace. As the song ended, Susan was crying a little. She was crying at how beautiful the things are that we humans are capable of creating, of giving to the world. That is one of many instances in which Susan has shown me the wonder of being here. As someone preoccupied with life to a fault, often fueled by anxiety and worry, I miss a lot of things. I’ve seen them. I’ve heard them, but not fully. Not really even at all. That is one of the many gifts that Susan has given me – she taught me how to pause, how to get out of my mind, and to be in something, like a song, a painting, a forest, a sunset, a moment. It’s not always easy for me, not having had enough practice, but I’m better than I was.

And I think in a lot of ways, that frame of mind is what creates that lift in her walk, the lightness in her step, her cheerfulness, her positivity. Even as she faces death, she seems to always find a reason to be dancing.

On Travel

The Death Project

When I returned from London in December, I was unwell and sure I would not travel again. Yet here I am on a plane somewhere, perhaps over Florida, on my way to Costa Rica. Last year Roy and I had been planning this trip when it became suddenly apparent that I was too sick to go anywhere. We’d never taken a real vacation together before – nothing more than a weekend in Toronto or Ottawa. So I felt this was something we should do if I had the chance. And with him on reading week at the university and me on my week’s chemo break and relatively well, this was the chance, perhaps the last one.

I’m ambivalent, though, about traveling. I always have been. I’m a rooted sort of person, so something always feels wrong to me about flying around the globe. My parents and siblings are the opposite:…

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Courage

Courage.

That is often a one-word sentence that is used en français to remind someone to have courage, to be courageous, in the face of some type of struggle. Many people have said that to me over these past months as I talked about my journey with Susan. And other people have told me how they did not know how they would handle the situation if they were in my shoes, where they would find the courage or strength.

Susan and I have spoken about courage. About how people admire my courage to share what I’m experiencing with the blog writing. And they admire her courage for facing her terminal illness with such strength. When we speak about these comments, both of us are a little puzzled. Neither one of us feels particularly courageous. Susan has written that she isn’t afraid of dying, of her death. And that people need only to be courageous for things that they are afraid of. We don’t feel overly strong. We can’t quite fathom that what we are doing is heroic. It just feels, for the most part, normal for both of us. We feel true, and we can’t quite define it further than that.

The other night I was out for a supper and conversation with, Mike, a visiting filmmaker. Mike’s made a lot of films over the past 30 years, some of them focused on AIDS and HIV. He’s seen a lot of his friends die. We were catching up on the handful of years since we last saw each other. We shared thoughts with each other about health, disease, terminal diagnoses, teaching, yoga, and awareness. He asked thoughtful questions about my responses to Susan’s cancer and prognosis. It was a heartfelt dialogue and I was grateful. We were then joined by another filmmaker who happened to drop by. The conversation continued, but lost some of the intimacy, although none of the honesty. The new guy mentioned something about it taking a lot of courage and strength to go through what I am experiencing. And I paused, because here I was again, I just didn’t have a response, and part of me was a bit annoyed, not by what the guy was asking me, but that I didn’t have a response. I struggled a bit in that moment. Recalling what Susan said, I mentioned to the new guy at the table that I didn’t need courage to eat my supper, because I wasn’t afraid of it. But it still didn’t answer my own wondering about what it is that I am doing that seems so hard to convey. I said: it’s not courage, it’s not strength. I was looking into my hands hoping for some light, and both Mike and the new guy were quiet, letting me find my way through it. And in one of those rare moments when the universe offers an answer and I am there to catch it, I said: I think it’s love. I looked up and caught Mike’s eyes, and he nodded.

As I spoke with Susan some more, we wondered about love being an answer. And Susan reminded me that along with love, acceptance has been the foundation from which she moves forward. I too, have been fortunate to have acceptance (interrupted by the occasional wishful thought). Without acceptance we’d just be running from ourselves. I think it is possible to summon courage and strength, to reach deep into one’s stamina pool, and will oneself to persevere. But love? Well, maybe. I am not sure I can explain it, in fact I know I can’t, not yet anyway. But it feels like the right answer, so I’m riding that wave for now. I don’t feel heroic; courage and strength are the traits of heroes and super heroes. I’m just a guy walking alongside a dying woman, embraced by love.

Super Susan, out for a skate, 2015

Game shape

Not in game shape. Anyone who has bothered to listen to the inane comments of professional athletes returning to a sport after a prolonged layoff will no doubt know the phrase: game shape. One can hit the gym, run cardio on a treadmill, practice at full speed, but until the athlete gets into a game or two they aren’t in game shape. And those first few games are unusually tiring for them.

I found myself pretty tired this month. Christmas is not a restorative time for me, hasn’t been for a while anyway. There were those precious years when my children were young and the magic narrative around the holiday made the season positive for a while. Before that, I think I used alcohol and cynicism to help me manage the fatigue and sadness. This year I struggled quite a bit (having given up the alcohol and cynicism). Susan said I looked worse than her on Christmas Eve, which is pretty grim if you saw her that day!

Our last day in London together.

Susan had arrived back from London in much worse condition than when I saw her a week prior. There were four days that first week back of hospital visits, and then a trip to NYC to visit the sarcoma specialist, then following up with two more medical appointments in Montreal, the last one resulting in Susan crying and walking out of the consult and no one from the medical team attempting to stop her or comfort her.

And accompanying these previous weeks has been Susan’s physical suffering and worsening condition; and me being with her for much of it, and witnessing all of that day to day. Susan had been quite independent of late and I had grown accustomed to her state of relative wellness. And I was not quite ready to handle the sudden downturn in things. I knew it was coming, I took good care of myself, prepared as best I could, but it still zapped me (as the boxer Mike Tyson once said: “Everyone has a plan until they get punched in the mouth.”). Cold weather and Christmas probably didn’t help, not to mention the mental drain from seeing poor caregiving skills up close by a medical team (after waiting hours in a windowless examining room); but I think it’s just the fact that I wasn’t in game shape.

I guess if I was a professional athlete I’d offer up a bunch of platitudes. “I just need to put my head down and get back in game shape as soon as I can; or take it day to day until I get my legs back”.  But as it turns out, the day Susan was admitted to the hospital this week I went back to my flat in Dorval for the night. I called my sons and invited them over for pizza and movie at my place. My oldest son declined, immersed in a previous commitment, but my youngest son, Loch, ventured out into the frigid night with me. It was a simple evening in my overly warm apartment, with a pizza and some chocolate turtles, a cat curled up between us, and just hanging out for a few hours that seemed to restore me. I am not sure if I’ll ever be in game shape when it comes to losing Susan to such a lousy end, but I’m glad I haven’t forgotten the things that help.

Poppins

I said goodbye to Susan the other day. She was leaving for London for two weeks, and I dropped her at the airport. Planning to spend some nights at her son’s apartment, she had packed bedding into a huge suitcase, which dwarfed her as she stood next to it. It was a pretty humorous site. We had left Montreal for the airport at the peak of afternoon rush hour and had given ourselves one full hour to get there, but surprisingly the road opened up for us all the way there. It was almost like magic, like Mary Poppins magic. No traffic, no construction. Even when I mentioned there wasn’t any traffic it didn’t jinx us. Twenty-three minutes from her door to the airport drop off lane! I unloaded the steamer and I stood beside her. I kissed her mouth and put both my hands on her cheeks. Her eyes sparkled, not from the kiss (I don’t think) but from the gold inside her that those of us lucky to be close to her recognise. And then she walked through the doors and into the terminal. It was a hard goodbye, that part of it, the walking away part. The metaphor of her preparing for and moving toward death was almost too much for me. Then she turned, smiled, and waved at me through the window.  And perhaps with the magic from the drive in the air and her destination, the last scene of Mary Poppins came to mind, in which Mary sees her work complete, smiles, and flies off across the London sky. I guess that made me the cockney chimney sweep waving from the rooftop and telling her not to stay away too long.

mary poppins silhouette

 

 

Normal Joe

Not long after Susan’s diagnosis, she told me that she now felt like dying was her new job. We had been discussing her giving up teaching, and her research project, and a writing project, and the things that she was working on at the time. And her future plans and goals and dreams. And like everything she does, she went about the business of doing the best she could at her new job.

But dying is hard work. Susan said that to me at the end of summer as we were sitting in her backyard. And she had been talking about her feeling pretty good but being aware of things to come. And how the urge to become attached to living was alluring. And the effort required to hold onto her positive attitude and cheerfulness. And thinking of the people in her life that she loves and cares for, her wanting her death to be something that they can use to enhance their own remaining time. She started to cry a little.

Susan in her backyard in Sutton, October 2017.

A few weeks ago I arrived home to my flat after teaching a night class. It was late and I was tired as I had also taught a morning class. I’d been working feverishly on a research application. Cheryl (the mother of my sons) had been away for two weeks so I was a full-time single parent in that time. Susan was away visiting her son. The fatigue from my day felt normal. I trudged up the stairs after a 16-hour day like I was a normal Joe coming home to a normal life. Working, dreaming, parenting, commuting. Normal.

Yet, I have this aspect in my life that is normal and not normal at the same time. Susan’s terminal illness. And there have been times, although not recently, where I imagined the whole year has been one long movie script that I am writing or reading or directing. And as the director I’d like to do a rewrite. Write the cancer part out of the script. But the Producer on the movie says no, that’s not possible. I’ve been passing through my normal days doing my best to be mindful and grateful. And I have had many of those moments. And it has been surprisingly simple to get caught up in my normal flow of life, to feel like a normal Joe. I feel a large part of that has been Susan’s attitude, approach, demeanour, love, and kindness that has reassured me that one, she’s okay, two, she’ll be okay, and three, I’ll be okay.

Occasionally I’ll wonder what it would be like if Susan was angry or in denial or depressed or all three! Maybe she takes to smoking weed after some cannabis crusader convinces her that in addition to curing cancer (all of them, by the way!) it promotes hair growth and makes your boyfriend smarter and cuter. What if Susan was struggling?  Like really struggling? And those of us around her needed to seek help so we could help her. Is there a death-anon, like al-anon, for people whose loved ones are dying but won’t admit it? And how would trudging home from work to be faced with that situation feel? By that I mean, get home, and make sure that supper gets put on the table, that homework is attempted, then invent something to send for the next day’s school lunches, and then go to a death-anon meeting to (hopefully) help a loved one in distress. And how would feeling helpless infect my own grieving and sadness? And would it trigger other aspects of my own depression and anxiety? And would that make my relationship with Susan even more strained and difficult on top of her denial and anger? And so, yeah, when I think about how complicated being in love with someone who is terminally ill might be, I look on the bright side and suddenly feel grateful. I might be directing a movie script with a sad ending, but at least the lead actor is a joy to work with!

Susan has made dying normal. Susan has made being a loved one of someone dying normal, simpler, maybe even easier now that some time has passed. And a part of me wonders if she is doing all the work. Is she making it easier for all of us around her? And in doing so, is that making it tiring for her? I feel like I am getting off easy in this journey. And while I appreciate the load lessening, there is a part of me that wonders if I am doing my fair share of the navigating.

I started thinking about rituals and life transitions and my son’s high school graduation came to mind. It was a fairly significant milestone, and if we had lived closer to our extended families, his cousins, and aunts and uncles, and grandparents might have been around, and there would be cards and congratulations. Everyone would be patting him on the back and wishing him luck, and maybe offering advice. My son would most likely be a bit embarrassed at all the attention but appreciate it nonetheless. He’d listen to the advice with one ear, open the envelopes to check for the cash, and go out and enjoy the fact that he was done with school for now. He might have some doubts and concerns about what comes next, he might feel uncertainty mixed in with the anticipation. I am pretty certain that the one thing he wouldn’t be doing was taking time and energy to make sure the people around him felt safe, and secure, and assuring them that he was okay.

Sometimes I think of Susan as a group leader taking a bunch of us on a trip to Tibet. She speaks the language but none of us do. She has to shepherd us along, do all the talking, all the arranging, ordering the food, getting us to the correct train station. Plus, she has to take care of herself while she is not feeling physically well. The rest of us have no cultural references that translate well from our own lives. Kindness and politeness help us, but language and strangeness complicate matters. None of us are capable of managing on our own. We are like the daycare kids clinging to a tether as the caregiver leads us to play in the park.

Susan, on a path.

Then I was wondering what it would be like if as a society we approached death like we do a graduation. Maybe we get an invitation in the mail announcing an impending death except we don’t have to buy a gift. And it becomes normal. Not awkward, not scary, not weird. Then all of us who surround a person who happens to have a terminal illness are standing on our own. Treating an impending death as normal is more than “staying strong” or being stoic. It’s about being there. I’ve written about this before. But I feel that because we live in a death-phobic culture and don’t have any practice with death and dying, that the onus is now on us to rise to meet the moment. I feel it is our responsibility to prepare ourselves so we can be independent and offer help to the one who might need it more, or at the least, be a zero sum in the equation so as to avoid being a burden.

I am navigating a special journey, one fraught with hardship and joy, that will test my heart. I was not prepared for this change in my life plans. I’m fortunate in that I spent a lot of time and energy in cognitive behavioural therapy (CBT) that has allowed me to process a lot of things and helped me better understand who I am.  And this has allowed me to feel solid throughout the past seven or eight months. But I have also had to evolve both spiritually and emotionally. I had to catch up on some reading, study up. I’ve also had to look into places in my own heart that were dark and shine a light around in there. And I’m doing that as best I can. I do it so I can be solid and honest with my own fears and worries. I do it so I can face whatever monsters come in the night, but also so I can look forward to and receive new senses of love and light that will also appear. I continue to do my homework so I can remain solid even though I know I will likely crumble from time to time. And just as important, I’ve done everything I can to take care of myself so Susan doesn’t have to do it for me. Even though she is brilliant, loving, kind, and generous, I don’t want her to expend her remaining time worrying (too much) about me in the present moment nor the future. She’s busy enough with her new job.