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.

 

The Bright Hour

I’m reading Nina Riggs’s The Bright Hour. I can’t quite bring myself to finish it. I’ve been turning the last few pages and pausing, not sure what emotions lay waiting for me when I finish, but sensing there will be something hard. I’m quite certain this is why I am hesitating. Yes, I am savouring the pages, knowing there are only a few left. Taking in each sentence and thought and the lyricism, admiring it all. I now think that this is much like my time with Susan. The pages in a book. So finite. I am doing my best to drink in the minutes and hours. I don’t dwell on a future without Susan, much. In some ways, I just imagine myself turning older, becoming monastic-like with my teaching, and my writing, and image-making and parenting.

There were days, a few years ago, when I was making weekly or nearly weekly trips to see my therapist that I had this type of hesitation. Driving to his office, feeling or maybe knowing that something hard was probably approaching, knowing that I would most likely cough up something about my past that would hurt coming out. I knew that I’d feel better after, but that didn’t make the drive any calmer. I am also reminded of the time, when at age 15, my older sister’s friend Chuck, seeing that I had overdosed on alcohol, stuck his two thick fingers down my throat to trigger a vomit session. Barfing was a miserable experience but oh so good after. Thanks Chuck.

But now, after a few more days of hesitating to finish the book, I think I am dreading the sadness that will fall over me. Nina’s book is wonderfully written, and she shares many similarities with Susan. They are both intelligent women, published poets, loving mothers, reflective and gifted writers. And both were handed a terminal diagnosis. And so, I’ve been reading Nina slowly. In the act of reading, I go back in time, to sit with Nina as she writes. She is still alive as I read. And I think that when I finish the book I will realise that Nina is dead. There won’t be any more words to read. And I will miss her. And that reminds me that I’ll miss Susan.

I’ve been telling myself that I need to find the right place to sit and finish the book. Like when I get a letter in the mail, I wait and find a special place to sit and read it. I haven’t cried for a while and I guess I’ve forgotten that after the hurt, after the grief, there comes joy and relief.  So, tonight before I go to sleep, I’ll say goodbye to Nina.

Phlox, from Susan’s garden. (pinhole photograph)

The wind took it

Light pours, light falls, light spills, light leaks. I’m floating and rising to the top of something. I open my eyes and surface to meet the world around me. I see Susan’s silhouette, standing next to the bed. It is an early morning in summer and I am waking to watch Susan as she pulls the cable that raises the window blind. It looks like she is hoisting a sail.

I have always liked the wind. Growing up in a small prairie city, which was more like a large town, I had numerous opportunities to immerse myself in the wind. I could ride my bicycle from my home on the western edge to the drive-in cinema on the eastern edge in about 20 minutes had I needed to. Beyond the drive-in was a farmer’s field. It was a fifteen-minute ride to the man-made beach on the northern edge of the city.  The fair grounds were a two-minute bike ride from my house. It was very easy for me to fine prairie solitude.

van Gogh’s Vento

Without really knowing it, the wind was a constant friend. It was great when riding home with a stiff breeze at my back and a pain in the ass when riding head first into it.  Springtime meant kite flying. My kites were usually of the black winged bat type, with yellow stick-on-eyes bought for about $3.99 at Zeller’s. There were usually lots of places to fly a kite. The school yard down the street from my house was huge. It had a soccer pitch and a ball diamond and then room beyond that. And only a few lilac trees around the edges. Perfect for kite flying. Of course, I usually chose to fly it in my back yard or on the street near large trees and power lines. If I was lucky the balsa wood stick acting as the spine for the kite would snap before it became entangled in a tree.  Then I would spend my time looking for a suitable substitute only to get airborne and then crash into a power pole or the ground. Sometimes the string would break and the kite would enjoy a few seconds of true freedom before vanishing over roof tops. After a few hours I’d announce myself in the house with a rolled up, knotted ball of string. My mom would ask what happened to the kite.

The wind took it.

yup, a bat kite.

I think the wind was a mischievous player in my youth, part teacher, part companion, a bit high maintenance as a friend, sometimes wanting attention; it was quiet when I deserved it, and loud when I took it for granted.

During my first months living in Montreal I had been struggling with the writing of an older film script, one that I started while still living out west. It was a story that took place mostly on empty prairie highways, with a few characters intersecting from time to time. It was a road film and it was important to me. I would sit in a café and hammer away at the script and always I seemed to be looking for money, and ways to get back out to Saskatchewan to shoot it. What was ridiculously frustrating is that the story seemed to be slipping further away from me rather than coming closer. On most projects, the writing brings me closer to my own intentions and desires, and the story becomes clearer. This prairie road film was elusive. I distinctly recall packing up my notes and drafts (no laptop in those days for me) after a long and unsatisfying writing session from a downtown café. It was May. I had been living and studying for my master’s degree in Montreal about nine months.  I walked out of that café and immediately a powerful wind swarmed around my face. It blew my hair back, I had to squint, it ruffled my papers, pulled my coat, and glued my pants to my legs. I was being scolded and in that moment I realized that my head and heart were back on the prairies but my feet were on the ground in Montreal. Where I is, is where I is. The wind was telling me to write a story that took place here. Perhaps at some point, when the money and time was available, I could return to writing the prairie film. So I wrote and directed an urban road film that takes place all within forgotten and abandoned places in Montreal. And the prairie script? Well, I still hope to make that film but for the now, the story is missing. I think the wind took it.

I’ve mentioned somewhere before that of all the many things that Susan loves in the natural world, wind is her least favourite. However, there seems to be an exception. Sailing. Susan was an accomplished sailor in her early days. Her mom proudly recalled watching Susan in a regatta (that’s sailor lingo for a race) from the shore. She saw Susan sitting in her boat, sail flapping, arms at her side, not moving, and looking out of place while the other kids were navigating the course. She felt really bad for her. Then someone told her that Susan had already won the race and the other kids were still trying to finish! Her mom went on to inform me that she was the first young woman to win a solo regatta at her sailing club on Brome Lake!

Laser sail boat, like the one Susan sailed. (I grabbed this from a sailing site and don’t have the photographer’s name)

I had taken a few sailing lessons once before, near my home on the West Island, but it was a tawdry affair, where the adults in the class were more concerned with the rhum afterward. But a few years ago Susan and I went sailing. We stopped by her old sailing club in the Eastern Townships, on the same Brome Lake. We had arranged to take out a boat not being used by current students. A young instructor asked if we needed help rigging the boat. Susan smiled and shook her head. The guy was relieved I think. The Laser sailboat is generally a one-person craft but large enough for two. Susan had not sailed in over 25 years but she went about installing the mast, setting up the ropes, rigging the sail, and mounting the rudder and tiller. I essentially stayed out of the way. Within a short time the boat was ready. We zipped up our life jackets and launched the boat into knee deep water. Susan instructed me where to sit, and then with a slight push we were off. The sail rippled and flapped but once Susan was settled she let out the mainsheet and the wind filled the material and quieted the racket. The boat was being pulled out to the middle of the lake. Susan looked at me and smiled her smile. The boat cut through the water and she had one hand on the tiller and the other on the mainsheet. I am a full passenger. She scootched over a bit, finding her spot. I watched as her wet shorts wrap around her shapely thighs and her strong arms held fast the line. And just like that we were sailing! Susan grinned at the moment, and between the feeling of being pulled along and her beaming smile I had to smile too. I imagined her back in her early teenage years sailing against and beating all the boys in the regattas. I was retroactively proud of her.

Time to tack and come about, tiller, rudder, boom swings, I duck, and the sail fills again. We both move to the other side of the boat. We shimmy out and tuck our feet under the toe straps and hike our butts out over the the side. I watch Susan ride the edge of the wind, water splashing over the gunnels; we are wet but safe and sailing.

We drift into irons and switch places so I have my hands on the tiller and the mainsheet. I’m clumsy, I can’t manage the articulated arm of the tiller any more than I can I comprehend a double negative when it comes up in a conversation.  Pull this way to go the other way. Huh? And the wind. I can’t find the wind. How is that possible? My oldest companion betrays me. It seems to be coming from everywhere like an echo in a canyon.  Susan teaches me to move slowly, wait for the boat to respond. I let out the mainsheet, I feel the wind now. We are pulled along. I am sailing with Susan! The wind takes us.

She is a good teacher. My confidence grows and I am happy to be out on the water with her. On my very first tack I turn the wrong way and we capsize, turtling, in sailing terms.  The water is not so cold. Susan laughs and laughs. I think capsizing is funny but she thinks it’s even more funny. Susan begins looking for something. The dagger board has come out. She finds it and slaps it back into place and we prepare to right ourselves.  I see that my bulk and weight has a tangible benefit for this part of sailing. Ballast. We right the ship and settle back in. We sail some more. I’m a little better but we still capsize one more time. She finds it just as funny the second time even as I am a bit embarrassed. We sail for a few hours although the number of times I put us in irons I don’t think counts as sailing (‘in irons’ is sailor talk for pointing the boat directly into the wind and not moving anywhere, except maybe backwards). Thoroughly soaked, I ask Susan to take over the tiller. We sail. I love feeling the power of the wind and I love watching her so free and at ease.

Capsizing Laser. Sailors get tossed out of the boat! (I took this from a sailing site and do not have the photographer’s name)

I mark the moment with a cerebral snapshot as I don’t have a camera with me. I am going to learn from Susan’s sense of adventure and play and laughter. I am going to embrace her perspectives and the way she chooses to see the world. Because, as I’ve learned from her, perspectives are choices. She often reminded me that she chooses the way she wants to see the world. She can choose to be negative or positive. I always thought I was an unfortunate player in life in that regard and was envious of the people who seemed to always be grinning or happy or positive. And then I learned from Susan that she wasn’t given positive thinking rather she worked hard to catch herself in negative spaces and then change her outlook. When I look at Susan I see the result of her hard work even though she had hard times too. A single parent of two young boys without a lot of resources. I’m certain she had times of loneliness and bitterness and anger. And finding a way through all that to let her loving self emerge is truly inspiring. I still struggle with making the positive choice in my outlook. It’s hard work and sometimes like many of us, I get caught up in my own life and more hard work just seems like too much. I love how Susan chooses to see the day. And even now with her shitty diagnosis I continue to marvel at her abilities. Her outlook is familiar yet it never seems old watching her practice it. When I see how she approaches her day, her thinking, the way she embraces everything, it helps me move forward. But I admit it’s a struggle. I strive like most people to be positive but depression and anxiety sure complicates the effort.

Susan and I never went sailing again after that outing. Lots of reasons I suppose: time, desire, no wind. I live a ten-minute walk to the St. Lawrence river where two yacht clubs are within stone throwing distance. I wonder why I haven’t. I wonder if I am afraid of the time it will take me to get good at it. I wonder if I am afraid of looking silly out on the water. And why with an experienced sailor so close to me didn’t I take advantage of her knowledge?

Lately, I’ve been looking at online ads for a sailboat. I am not sure if I am looking for distractions from my own periods of depression or if I want to get back out in the water and face that devilish wind whom I once called old friend. And would getting into a boat like the one we sailed bring me closer to Susan or make me sad? I have enough sadness simmering below the surface at the moment. Perhaps I am worried that any other sailing experience will diminish that only outing with her. I guess I’ll ask the universe for a little bit of guidance on that and keep my eyes open for any clues. And I’ll choose to be positive that something will present itself to help me decide.

But I’d like to go back out on the water. I’d like to take my positive choices and be the kind of person who can, with greater ease, choose my own perspective. Maybe sailing can be my metaphor for shedding negative thinking. Sail out to the middle of the lake and drop all that nasty anxiety and negative worry overboard, or better yet, toss it into the air and

let the wind take it.

 

The eye

The eye

I can recall my mother’s repeated warning to us kids to beware of a certain type of storm cloud in the prairie sky, and if we saw one on the horizon, we were to make tracks for home, and if not home then into someone’s basement. She had grown up with some horrible storms as a child in the 30s, and her fear of them made us cautious and respectful of the fierceness and speed at which a storm can arise.

The weather has been in the news a lot of late. First the terrible hurricanes that ripped through the Caribbean and then this wonderful off-season summer weather that most of us in central Canada are enjoying. Coinciding with the nice weather has been a string of days and even weeks in which Susan has been feeling her best ever this year.

Polaroid of Susan and her first bike ride of the summer!

The side effects of the chemotherapy seem to have fully dissipated and she has found some of her former energy. In addition to her usual cheerfulness and positivity now resides some energy to do things she loves, like walking in the woods, strolling about Montreal neighbourhoods, or riding her bike.

 

 

excited to find a hidden ruelle!

 

 

 

 

Her hair has grown back to a stage where it looks like she made a stylistic choice to have it short rather than from the chemo fallout. Most days it is hard to imagine that she is not well or that she will grow even less well. And this type of bounce that she is experiencing has been quite a boost to all of us in her life. It has reduced some of the sadness and allowed us to let our lives take on some of their former normalcy.

 

A few weeks ago, I recall seeing a storm chaser somewhere in Florida doing a video report. The footage began with horrific winds and driving walls of rain. Then as the eye of the storm passed over the area, there was a sudden calm about the scene, and the once bending palm trees were still and the rain had stopped. Aside from the flooded streets the scene appeared quite normal. The storm chaser was informing the viewer that within a few minutes the sky would darken, the rain would return, the wind would rise, and giant waves would crash onto the beach as the back end of the storm swirled along.

I now feel as though we are in the eye of a hurricane. We have passed through the front end of the storm of Susan’s illness; her early symptoms, which led to worsening ones, the surgery, the diagnosis, and the post-op treatment. And this return to some semblance of her former self, almost her normal self, reminds me of the eye of that hurricane. However, unlike the meteorologist predicting the speed of that storm, none of us can predict when Susan’s symptoms will return and with what type of ferocity. So day by day, moment by moment, we take what we are given, sensing that all seems fairly normal. Yet, coming up behind us is the back end of this shitty diagnosis. We do our best to resume regular programming but like most experienced storm chasers, and my mom, we know that we best keep within eyeshot of the cellar door; for as calm as it may seem now, we know we are going to face stormy weather sometime soon.

Street art, just off The Main.

What to say or not to say

What to say or not to say to someone who tells you that a loved one is dying of cancer or some other terrible affliction.

When Susan was diagnosed with her wickedly ruthless cancer I knew I needed to tell as many people as I could as a way to avoid isolating myself. Many of my close friends and all my siblings are far, far away so I made a lot of phone calls to start. I used the words like cancer, dying, no cure, months not years to live. I used those words because they were true but also expedient. In the first few weeks and months, telling people was emotionally draining. Hearing myself say those words was hard times.

Some people knew that Susan was not well, going in for surgery, but no one expected such terrible news. As we live in a death-phobic culture it is hard to react to such news. Most of us don’t rehearse or practice what to say, nor are we taught what to say or do when someone shares their sad news.

Susan has written on what to say to someone who has the terrible disease on her blog but I thought I might offer some ideas on what to say to someone whose loved one is afflicted. Here are a few thoughts of my own that might be helpful to others.

A few things that really helped me when I told people the news:

“What! That’s horrible news. I’m so sorry.”

“WTF? That sucks. How is she?”

“Oh my, I’m so sorry to hear that. How are you doing?”

Those are all things that let the person telling you the news know that you are concerned about them, or their loved one, and your comments are directed toward them and their well being. Depending on who the person is, you may find the need to touch their shoulder or give them a hug. Crying is fine too.

On the other side, there are some things that just didn’t feel good. But first, a photographic interlude!

Some public art that someone left on a bench. They must have read Susan’s post about giving their gifts and making art!

Up until a few years ago I wasn’t able to process someone’s sad news that quickly. I am certain that I said things to people in their times of sadness that were not helpful. They weren’t necessarily hurtful, most likely just benign. I know that my intentions were good and I meant to be kind but I just didn’t have a good model to follow until recently. I forgive myself for not knowing the best thing to say, and so should everyone else. Please don’t feel the need to apologize to me if you think you misspoke, just pass it along for the next time. With forgiveness comes a chance to learn, and here are some things I’ve definitely said in the past or heard from other people recently. I’ve included a comment on why I felt it was maybe not the best thing to say.

“Oh damn. My uncle had cancer last year and so did his dog and that was a really hard time for me and my aunt.”

I think some people need to say that they know someone who had cancer as if it demonstrates that they have an understanding of what you might be going through.  And that very well might be true, but anytime you draw attention away from the person telling the news and place the focus on yourself, it creates a disconnect. People have said something like to me and I feel like they couldn’t sit with me and my news for a minute, that it was too awkward.

“Oh jesus, seems like I everybody I know is getting cancer these days.”

Same as above, draws attention to your own life rather than the person telling you the news.

“Holy smokes, how long does she/he have to live?”

That feels like morbid curiosity.

“Oh my, I don’t know what to say.”

Again, this is about you, not the person sharing the news. When you say this, it puts pressure on the other person to comfort you.

“Oh, that is so unfair!”

Uh, life is unfair. Saying that doesn’t make me feel better.

“Everything happens for a reason.”

Not everyone believes that. I don’t. And saying this makes it seem like I don’t have a right to feel sad or angry about the news.

Advice. Keep it. Unless otherwise asked. Susan has written a good succinct response to people with advice on her blog.

A few months ago I went out with some people to see a bar band. It was a casual affair. A friend arranged it and got a few other people to come as well. I went because getting out was part of my strategies to take care of myself. One of the guys in the group, Arthur, I had not seen in a few years. To be honest, I don’t really know him all that well. I‘ve never been to his house, I can’t recall his kids’ or spouse’s name. I know he knew about Susan because he is good friends with my buddy who arranged the outing. So, we’ve checked our coats, grabbed a cocktail, and the two of us are standing apart from the others. Conversation goes something like this:

Arthur: “So, how are things?”

Me: “Well, my girlfriend is dying of a rare, incurable cancer.”

He nods. I shrug.

Me: “Other than that…”

I squeeze the lime into my soda water. He nods again.

Arthur: “Other than that… how was the play, Mrs. Lincoln?”

That cracks me up. And we both chuckle.

For me, humour is okay. I guess it depends on how well you know the person sharing their news with you. It had been a few months since Susan’s diagnosis when Arthur dropped that line on me. It wouldn’t have worked if it had been the day after we had received her news!

The really good thing is that, in general, you don’t have to say a lot. Just let the person telling you the sad news know that you heard them and echo your concern for the situation and for them. Offering help is a nice way to end the conversation. I really appreciate all the kind words and actions of so many people. The news is hard to fathom and it’s even harder to tell someone, so it is most appreciated when people show their care by offering simple but kind words and gestures.

At Pine Beach, August 2017

Susan Time

This is a guest post by Miriam Schleifer McCormick. Miriam has been Susan’s dear friend since they were still in their teens at college. Though Miriam grew up in Montreal, she now lives in Richmond, Virginia, where she is a philosophy professor.

A lot of life has been happening these last five months. My daughter got married, I got married, my husband’s beloved mother died, we sold our house, we moved to an apartment, we bought cottages from my friend, I had (not serious) surgery and underwent general anesthetic for the first time, I found out that (if all goes well) I will be a grandmother in February. I have also been quite steady in my work: a couple of talks, an article published, another submitted to a collection, I am coming up for promotion. And, as always, enjoying Montreal summer, and the lake, and friends. But throughout all this life, what I feel most constantly in my heart, my chest, my throat, the space between my eyes is Susan. What does that mean to say I feel Susan? Images, thoughts, memories, words all wrapped up in sadness and love. Whatever else I am doing, I am just a breath away from Susan and the fact that she will be leaving soon for good.

Jackie, Miriam, and Susan, 1991, from Miriam’s wedding.

I try, as Susan does, to be open and honest about challenging times, and so I told everyone about Susan’s diagnosis and who Susan is – my dear, close friend of more than thirty years. I was on a train from Seattle to Portland when Roy called me to tell me the news. We had been texting with updates about how the surgery was going, and it seemed to be going on a long time. As soon as I heard his voice I knew it was bad. But part of me knew already. When we had last skyped, I had seen a look on Susan’s face that gave me a sick feeling that she was actually really sick. I tried to convince myself that this was my way of protecting or readying myself for the news if it were bad but that, in all likelihood, it was just a big fibroid. Even that did not seem like just anything since she was having a hysterectomy which at the time seemed very serious and scary.

So I told everyone – my friends, my colleagues, even my students. I wanted them to know that my attempt to reschedule our final exam was not just to suit my narrow self-interest. I have noticed though that people forget about it, or they forget about how central and significant it is to me. I sometimes think it is harder to process or categorize because Susan is just my friend, not a lover or a close relative. If I told people my sister was dying I think they would remember and ask about it the next time I saw them. When I was talking to someone recently about my relationship with Susan, she said “So she’s like a sister?” And I said no, not at all. She is a true friend. True, deep friendships are not like anything else; they are special, rare and maybe the most important relationships in one’s life. Unfortunately, I have experienced the death of some good friends. I know what that absence feels like. But I have never experienced the absence of someone who knows me like Susan does, who knew me before I was a mother, who has known me though so many relationships, both mine and hers. We have both listened to each other patiently on the phone describing the angst of an unhealthy relationship, knowing what would be best for the other, but also knowing we needed to figure this out for ourselves. There was even a time when the misogyny of my ex-husband was so toxic that she was wise enough to know that only a little distance would see us through. Susan’s wisdom is something I continuously benefit from. A few years ago she visited me in Richmond and I was describing the different guys I was dating or interested in. She would gently say “I think Lance sounds great…I like Lance.” Before I even knew that he was the love of my life and the first opportunity I would have for a healthy romantic relationship, she somehow could see it.

Some people do remember and they ask “How is Susan doing?” I am never sure how to respond. If they mean how is she doing physically, I give them the latest report, explain that she is still able to live a fairly normal life. If they mean how is SHE doing, I tell them she is continuing to face this time in her life with strength, beauty, love and integrity; she is offering a glimpse of what is possible in the face of death. And then I send them her blog address. Many people have read it, and are gripped and amazed. In their reactions, and in all those who have had a chance to read it, I see that Susan succeeded in fulfilling a desire she expressed to me back in April. She told me through her tears, that her hope was that something other than loss can come from this experience. And so much more has come. Susan’s words have been a gift; they have allowed us to think, talk and feel differently about dying and death, to see it as a part of life that perhaps need not be feared as much as we all tend to. They have also served as vivid reminders of what we all know already: love one another and cherish every moment.

It is even more rare for people to ask how I am doing, and in some ways even harder for me to know what to say if they do. I arrived in Montreal at the end of April. I am leaving now near the end of August. When I arrived I didn’t know if Susan would be alive when I left; I didn’t know what her life would be like throughout the summer or how much time we would spend together. All I knew is I wanted to be close to her, to be with her as much as I could. In some ways, this isn’t that different from past summers. Since we don’t see each other through much of the year, when I come to Québec in the summer, I always crave my Susan times and am like a little kid constantly asking “Will you come play with me?” We always both have work to get done, need to balance our time in the country and city, and the summer always ends with me feeling like I didn’t get enough time. And I have always been consciously appreciative of our time together. Conversations with Susan could cover a larger range than with any other person in my life, from the extremely quotidian to the highly abstract. I could talk to her about my work without her eyes glazing over, and also in the course of a conversation we could talk about our kids, books, sex, politics, food, weight gain, aging, parents, weather.

And so the appreciation I have felt this summer has not differed in kind from other summers but it has differed in degree and intensity. Every time we have made a plan for weeks or months in advance, it has been unclear if it will be possible, and then when the day comes and we are able to do what we planned I feel such gratitude. I felt this most acutely a couple of weeks ago when Susan and her boys came to spend the night at my cottage in St. Donat. Susan had mentioned, back in May, that Nathan said he wanted to come up. I had not expected this would be possible and was so thrilled by the prospect. But then with everyone’s schedules, and doctor appointments, and travel, it started to feel doubtful that it would happen. The day we had planned for them to come I went for a walk and I was surprised to find myself with an overwhelming desire for them to visit. I hadn’t wanted something so badly in a really long time. I tried to work on letting it go, telling myself if they wanted to and were able to that they would come. I suppressed my urges to text and bug the way one does when newly dating, and then the message was sent that they were on their way. Oliver cooked pizza, Susan sat on the dock with her feet in the lake, she and Nathan played ping pong, we had a fire, we were all together in a way we hadn’t been in many years. And all of these ordinary activities took on a beauty, a beauty that is always there but rarely noticed.

Miriam, Susan, Oliver (Susan’s son), and Jackie, 2017

Every laugh, every hug, every time I have seen the love in her eyes as she looks at her sons has felt precious; I have felt so lucky, even a little spoiled, that I get to have those moments. On one of the few first sunny days at the end of May, I met Susan in Westmount park where she had been lounging and picnicking with her kids. I sat on the blanket with her. She held Oliver’s hand while he read a book, and looked up at the sun shining through the leaves of a tree. Her faced beamed with joy. That is an expression that is sometimes used: beaming with joy. But when I say it of Susan, it is quite literal. There is light that radiates from her smiling face. It touches you, you can feel it. It is warm and comforting. I know in the years to come I will always see that face and feel that warmth.

Miriam Schleifer McCormick