I was at Princess Margaret Hospital last week. I like to go there when I’m feeling anxious. It’s strange, I know. Why go to the hospital where Kate suffered her chemotherapy, her mastectomy, her radiation treatments and hours of waiting room boredom?
Well, because I still feel “inside” the experience. I went down to the basement, to sit in the radiation waiting room. I watched the people, looked at the pamphlets. One said, “Celebrate life: Mind, Body and Spirit.” It was advertising a workshop for “survivors.”
First, I found the message uplifting. Then, I found it depressing.
Kate didn’t like the word “survivor.” She hoped, initially, to go through the experience then leave cancer behind. She didn’t want it to mark her. She didn’t want to be labeled. Then when it became clear that the cancer would not leave, that she would never be a “survivor,” all the cancer advertising about those who get to carry on began to seem like a lie. (At her first appointment at PMH, she was given a copy of Dr. Buckman’s book, Cancer is a Word, Not a Sentence. When the disease metastasized, I returned to the book. It didn’t cover that part of the process, the part where cancer is not longer a word; it’s a sentence.)
Kate also hated the whole pink thing.
But, more importantly, one doesn’t need to have cancer to celebrate life in mind, body and spirit. It’s a message applicable to any human being. And there is enough trauma within the simple experience of being human that ought to give the message a universal resonance.
Live each day as if it’s your last, the cliche goes. And if you get “lucky” enough to live with advanced cancer, then you will get to experience an intensity of life that vibrates throughout the spheres.
Besides, being a survivor doesn’t mean you will survive forever. It means you have lived five years past your diagnosis. No one survives. With cancer or without. We’re all heading for the exit, so in the meantime, celebrate … and pause … reflect.
Today’s Toronto Star included a story that began by crudely claiming that Canadian university students are boring. The point of the article, however, is sobering:
According to the survey, 89 per cent of students said they were overwhelmed by all they had to do; nearly 54 per cent reported being hopeless and 64 per cent lonely sometime in the past 12 months; 86.9 per cent said they were exhausted, 56 per cent felt overwhelming anxiety and nearly 10 per cent had seriously considered suicide.
“The mental health issues are definitely compelling — the level and breadth of distress,” says Dr. Su-Ting Teo, director of student health and wellness at Ryerson. Teo is also president of the Canadian Organization of University College Health which co-ordinated the survey.
So, yes, I’m making a parallel between being a Canadian university student and having cancer. The prevalence of anxiety, the “breadth of distress;” it’s cause for pause and intervention.
These days, I must live without Kate, and yet I am never without Kate. I both miss her and feel her always around me. Her example and influence is perpetual, and not static. One pauses, but one also acknowledges the passage of time, which is the unavoidable.
Even in the middle of trauma, one can experience wonder, though it’s easy, too, to forget. Another reason I keep going back to PMH, I think. Not to re-ignite the trauma, but to re-invigorate the celebration. It’s strange, I know.
Maybe this photograph (Kate getting chemo, 2011) will say all that needs to be said.
Many years ago I read a couple of Judy Blume books. Blubber, I think, and Are You There God? It’s Me, Margaret. Heck, it was the 70s. I don’t remember anything about them, except the general texture of the stories. Warm, doubting, confident, questing.
Naomi and I are now reading Starring Sally J. Freeman as Herself. I’d never heard of this book before, but it is familiar territory. Warm, doubting, confident, questing.
But it also includes recurrent references to the Holocaust, concentration camps, and Adolf Hitler. The protagonist, Sally, thinks one of her neighbors in Miami Beach is Hitler in hiding.
The book is quite long and, I would say, slow by today’s standard for books for kids. The story concerns the Freedmans, who left New Jersey for Miami Beach because Sally’s older brother required a warmer climate for his health. Dad had to stay behind to work, so the family consists of Sally, her brother, her mother, and her maternal grandmother. Sally goes to school, makes friends, makes up stories, and generally just tries to keep on keeping on. She’s quite existential, in fact.
The lack of a driving plotline hasn’t dampened Naomi’s interest. I think actually it has drawn her more deeply in. She is engaged emotionally. She cares about Sally. She is also drawing connections between Sally and herself.
Or as they say in grade three: text to self, text to text, text to world.
We read this passage recently, and Naomi said, “That’s how I feels sometimes.”
She felt like crying. Some good luck that bird was bringing her! She couldn’t speak. If she did her voice would break and then nothing would stop the tears. And she wasn’t going to make a fool of herself like that blonde girl in the corner, bawling her eyes out.
The reference to the bird is that a bird pooped on her, and her grandmother said that would bring her luck. The book, though, says “plopped.” Naomi asked me what that meant, and I said “pooped,” then changed the plops to poops after that. Many giggles followed.
Anyway, I saw that Naomi identified with Sally’s sadness, and this made me glad. Naomi is a joyous and rambunctious child. So much so that most people don’t stop to listen to her quiet moments. Sally J. Freedman is helping Naomi articulate her depth, helping to stir her feelings and get them out. Her mother would be very happy about this.
Me? I spent over an hour tonight listening to Leonard Cohen. Just letting that voice wash over me.
I hate Mondays. (Tell me why.) They are the saddest day. Every Monday I wake up depressed. Nauseous, achy, over-tired, cranky. Angry. The life I have is not the life I want, but it is the life I have, and there is much about it that is good, and much about it that oppresses me. Fu-doodle fish! I’m just like Sally J. Freedman.
It’s a Judy Blume world. Who knew?
I go to Kate’s blog to find out what was happening in June 2011. I remember in a general way, but not specifics. Her radiation treatments were underway, then ended. She posted a photograph of her mastectomy scar. Good God. The radiation was supposed to be the end of the major interventions. The end of the radiation was supposed to be the beginning of the transition back to “normal,” a transition that never happened.
There was no return to normal, but there was a progression of more than disease. There was a progression into a depth of soul that rocked me to the core and changed everything. Except sometimes I look around and it seems like nothing has changed.
The trivial and the superficial continue to dominate.
But then it’s thoughts like these that encourage me to stay in bed, and I can’t allow that to happen. I have a nine-year-old to inspire onward into a super life, among other things. I have promises to Kate to keep.
Plumbing and speaking the depths, is one of them.
Photo of poppy from my garden last week. The dude abides and beauty abounds.
I dreamed about you, baby.
It was just the other night.
Most of you was naked
Ah but some of you was light.
The sands of time were falling
from your fingers and your thumb,
and you were waiting
for the miracle, for the miracle to come
Ah baby, let’s get married,
we’ve been alone too long.
Let’s be alone together.
Let’s see if we’re that strong.
Yeah let’s do something crazy,
something absolutely wrong
while we’re waiting
for the miracle, for the miracle to come.
Nothing left to do …
When you’ve fallen on the highway
and you’re lying in the rain,
and they ask you how you’re doing
of course you’ll say you can’t complain –
If you’re squeezed for information,
that’s when you’ve got to play it dumb:
You just say you’re out there waiting
for the miracle, for the miracle to come.
It was all a big secret, but the awards were announced on May 25th.
Here’s a story from the Edmonton Journal, which doesn’t say much.
Here’s the PDF of the Guild’s news release of the short lists.
I’ve been on a couple of juries and never run into any controversy. How boring!
This jury had two men and one woman, and we picked a short list of three women. How progressive!
Lee Kvern won for In Search of Lucinda.
The short list also included Lynn Coady’s Dogs in Clothes, a kick-ass story.
All we really tried to do was find consensus on the three best stories of the 30+ or so we read. It wasn’t difficult.
It’s true, though, that a different jury could have come up with a different result. Such is the subjectivity of the thing, and also the general parity of the submissions. Some were better than others, though. Each of the jurors had slightly different preferences.
I’m happy to support the consensus of the short list. It was a good, thorough process, and a satisfying result.
To the writers who were not short listed, I want to offer on-going encouragement.
Early in life, Barnes writes, the world divides crudely into those who have had sex and those who haven’t. Later, into those who have known love, and those who haven’t. Later still — at least, if we are lucky (or, on the other hand, unlucky) — it divides into those who have endured grief, and those who haven’t. These divisions are absolute; they are tropics we cross.
He also writes, “There is the question of loneliness.” Then a few sentences later, “Nothing can compare to the loneliness of the soul in adolescence.”
Together, these quotations seem to beg the question, Is loss of a spouse like a return to adolescent confusion?
Yet, he is unambiguous. Adolescent loneliness is the worst.
Before I address this question, I should say something about the book as a whole. It is slim, a mere 118 pages. A quick read, it is divided into three sections. Ostensibly, it is about grief; specifically, it is about Barnes’ grief for his wife of 30 years who died in 2008, after a 37 day illness. Cancer in the brain.
But to say the book is a memoir would be mistaken. It is part memoir, part essay, part fiction. The three sections are titled: The Sin of Height, On the Level, and The Loss of Depth. Levels of life, as the title says.
The balloon on the cover is another hint. There is a survey of 19th century balloonists, and also 19th century photographers. This is all interesting, well told, precise in description, alert in metaphor, and … all preamble to Barnes’ use of the first person to describe his experiences following the death of his life-partner.
There is the question of grief versus mourning. You can try to differentiate them by saying that grief is a state while mourning is a process; yet they inevitably overlap. Is the state diminishing? Is the process progressing? How to tell? Perhaps it’s easier to think of them metaphorically. Grief is vertical — and vertiginous — while mourning is horizontal.
Me, I like this distinction. Grief has nausea; mourning, sadness.
Let’s get back to the question of adolescence, which Barnes doesn’t develop, but which I would like to push deeper. In my own case, as my wife approached death (and I mean her final months, so there was a period of extended awareness of doom many times longer than Barnes had), I had feeling I hadn’t felt in a long time. When you are living with the awareness of doom, yet trying not to be consumed by doom, you focus on the day-by-day. Watch the flowers grow. Take pleasure in the laundry. The future goes blank. You cannot plan. You cannot take for granted that you will be together six months from now. Maybe not even two months from now. “I’ve been here before,” I told Kate. “I know this feeling. I feel twenty-two again.”
History did not record what she said in response. I don’t remember. I don’t think she said anything. “Do whatever you need to do, honey,” or something along those lines.
The future, then, was blank. Full of possibility, yes, but blank. Lonely, too. One quests for love, to relieve the loneliness. Having found love, one can always lose it. It is part of the marriage contract. One must go first. The marriage contract becomes a caregiver’s contract. I will look after you. I will not abandon you.
Barnes writes, “There were 37 days between diagnosis and death.” In my case, there were 21 months. Grief is not competitive, and I don’t mean to be stern; however, the structure of this book is limiting, where it could be broadening. Barnes is careful to say each grief is specific, each experience is unique, yet the book reaches for general conclusions also. Levels of life.
I was not married for three decades, yet I inherited two step-children (and a new partner in her ex-husband), and the future is blank. Full of possibility. It must be. The children demand it so. As they should.
At one point, near the end of Kate’s life, I was speaking to a psychologist. She asked me how I was doing. I said I was listening someone compulsively to the music I used to listen to when I was 15 years old. I told her that for some reason I felt it important to reconnect with that adolescent. He had the whole world in front of him. He had all of his options open. I needed to live like that, I said. I needed to be ready for anything, and I trusted my 15-year-old self to get me through it. She was disagreeable. “We’ll see how that goes,” she said. I would like to report now, in that regard, things went just fine. I have been horribly, horribly sad, but I survived adolescence, and I’ll survive this. (At least, until I don’t. Time comes for all of us.)
I would have liked to have seen Barnes develop this line of thought (find arguments that contradict his absolutes), yet he is fanciful and metaphoric, an auteur, and, let it be said, brilliant. Earnest to a fault. Besotted with love. A true hero. Bravo.
I saw him once, at the Harbourfront Reading Series in Toronto. Late-1980s I would guess. It was the slightest of connections, yet I bleed for him, having read of his heartbreak. I wish him happiness, and healing laughter.
Keep passing the open windows, Julian. You know what I mean.
May has been a very busy month, a very logistically challenging month. I’m glad it’s over. I feel a sense of relief and accomplishment, but also a sense of dread. Because there is the logical conclusion that moving forward means moving farther away from Kate, except that there is no reason that should be so. Because in the sense that all time is embodied in each moment, then she is never gone, and especially cannot be closer or farther away. Just here/not here. Perpetually.
But it’s hard to think outside of time, isn’t it? Impossible, maybe. May, for example, has included Mother’s Day, two dance recitals, the anniversary of Kate’s death, Owen’s birthday, special bereavement events for the kids, Naomi’s musical theatre rehearsals, track meets for each of the kids. I had a doctor’s appointment in there somewhere. The garden has been blooming and requiring maintenance. Summer needs planning. Ongoing is laundry, dishes, cleaning, feeding. Plus, gosh darn, the effen kitty litter. Agh!
I prioritize sleep. If I don’t sleep, I can’t do anything else. The caregiver’s mantra.
Tonight I made a list of six blog posts I want to write. I’m not going to. This is it. A summary. A random trip through recent random thoughts.
I want to start by linking to a piece Rick Salutin wrote in today’s Toronto Star, “Rob Ford and the renaissance of print.” For millennia there has been a conflict between the image and the word. TV and McLuhan sped up the debate. Strangely, Rob Ford and his struggles have swung the needle in print’s direction. Rob Ford’s struggles don’t interest me, but the value of the written word surely does. I made a life-long commitment to it long ago, and I was glad to see it defended by Salutin today.
Kate, of course, had a master’s degree in art history and a minor in English lit. She was both image and word. She took excellent photographs and wrote like a master. If I asked myself, which recalls her better, a photograph or one of her blog posts, I’d argue it was the blog post. Her spirit shines through in her words. Her voice is present.
It’s interesting to me that Salutin says websites are saving print, when the web has been taken over by social media and photographs. Who actually writes anything online anymore? (Besides me, and … lots of others. But Pinerest is all about the image. Twitter is about a sentence and a half. Facebook is about locking you into a marketing demographic. E-books, okay, are print’s future….)
I’m cranky and stressed. These are random thoughts. Pressing forward.
I dropped Naomi off today at her three-day, two-night bereavement camp. In one way, this camp has been the point of the whole past 12 months. The day Kate died, we had a grief counselor meet the kids (timing was coincidental), and she played up the camp, and Naomi was sold … then she was told she had to wait 12 months. This was outrageous, but it has now happened, as I was doggedly determined it would. The promise of this camp goes back to the day Kate died. It is the last bit of unfinished business from that day. It is also Naomi’s first overnight camp, and both she and I were aware of it when I dropped her off today. She went off willingly, eager; I went back to the car and cried.
Then I drove home and did some grocery shopping, before heading into work for a half-day. I thought about writing a blog post called “Moments,” about the different intense moments that happened today. Like seeing the bus in the parking lot that would take Naomi to camp. Or getting off the subway later and pausing to let a tiny, miniscule elderly man pass ahead of me. He wobbled with a cane, and I could only think: leprechaun. Or when I was on Eastern Avenue, near the Loblaws, and I passed a young woman in a summer dress and she was beautiful.
Life, full of the sad and the wonderful.
Can an image do this? Or do you need a paragraph?
“You can’t go forwards without going backwards,” is another blog post I considered this week. I have resisted going backwards (mentally, emotionally). I don’t want to live my life regressing into the past. It isn’t what Kate wanted for me, either. But it has seemed to me in the past week, having gotten past the first anniversary of her death, that a trip to the past (I mean my pre-Kate past) is inevitable. I never wanted to be single again, and yet I am single again. And my pre-Kate identity is still within me. I never wanted to be a bachelor again, and yet I’m a bachelor again (though also a step-parent). How do I deal with this new-old arrangement? Consulting my ancient self cannot be avoided.
Perhaps you’ve also seen this? “The lethality of loneliness,” by Judith Shulevitz (New Republic, May 13, 2013).
Believe it or not, this reminded me of July 1, 1987, when I sat on a hill beside a ball diamond in East York, awaiting fireworks, and a high school rock band played the Police song “So Lonely.” It was really good, and I remember remarking to a friend that it was really good, and he said the lead singer was the son of a local church minister.
What else? Oh, I was going to write something about the bargain of being a caregiver. How you both know what’s going on, but neither of you talks about it.
But I can’t go there yet. In that area, I’m still waiting for Godot.
On February 4, 2011, I wrote a post on Auntie Cake’s Shop called Both Sides Now, after (of course) the Joni Mitchell song. I played that song today, thinking about how it was now more than one year since Kate died. Both sides of the anniversary.
The anniversary was odd but not difficult. We’ve done difficult. Even what’s hard now is easy. I felt good, actually, because I felt that I could say to Kate, “We are okay. We are together. We have suffered, but we have survived. We go on.” The garden is planted, the children are content, the logistics of the day-by-day is working out okay.
I woke from a dream last week, the morning of the anniversary, and Kate had said to me, “When this is all over, we’ll go away somewhere nice.” This? Somewhere? What are you talking about, Katie?
That original Both Sides Now post, I see, was about the mind-body connection. Weeks later Kate wrote about her panic attack.
I was thinking about that day just yesterday. Kate and I went for a walk. She wasn’t feeling well, and thought a walk might help. We got halfway around the block, and she said we should go home. What should we do? Call Telehealth? We did. They called an ambulance, and we had the full service delivery. Ambulance. Cops. Firefighters. All on our doorstep within minutes.
And as Kate’s post notes, we went to Toronto East General, where she was spirited away to an inner chamber and I was forced to wait in the hallway, until she told the nurse, “Enough of this shit, I want to be with my husband, if he can’t be with me,” and she came and sat in the hallway and waited for the doctor. There was some kind of emergency in Emergency that day. All of the doctors were distracted. The woman in the bed beside Kate had the flu; the doctor told her to go home and drink lots of fluids.
They were more concerned about Kate because she’d just finished 18 weeks of chemotherapy, which sometimes precipitates a heart attack. But this was not her fate.
That day in 2011 seems as close to me as yesterday. We are not Full Catastrophe Living any more, but the catastrophe is embedded in all of us.
Next weekend, Naomi is going to she calls “Cancer Camp.” It’s the Max & Beatrice Wolfe Centre’s three-day camp for kids who’ve had someone close to them die. She’s looking forward to it.
Last week, I took her to a “pre-camp” meeting, and she met her fellow campers, and the adults got a lecture. I’ve heard it all before. Call it “death,” say “the body stops,” understand that grief for adults is like wading into a deep river, but for kids it’s like jumping through puddles, but each puddle is a deep river. Kids can move more quickly between being happy and sad, but that doesn’t mean they aren’t capable of deep feeling.
The major benefit of the camp is said to be alleviating the sense of isolation kids can feel. They aren’t the only one who’ve lost someone. (Ooops, not supposed to say “lost,” as if the person had been misplaced.)
The Max & Beatrice Wolfe Centre is going through its own near death experience. Its funding is reportedly imperiled and its home within Mount Sinai is limiting its independence and ability to fund raise. I spoke to one of their leaders last week, on the anniversary of Kate’s death, also the day the counselor showed up to talk to the kids.
I’d been trying for weeks before Kate died to get someone from the Centre to come and help prepare the kids for the inevitable.
Lots of stupid things happened. That crazy, unaccountable delay is only one of them.
The counselor called to touch base before Naomi goes to camp. “How’s it going?” she asked. I said, “Today is the anniversary of Kate’s death.” She said she was sorry. She should have known that. Yeah, well. Then she told me that she remembered the attendant physician a year ago telling her that they didn’t expect Kate to go so fast. “Whatever,” I said. “I wasn’t surprised. I’d been trying for 10 days to get everyone to pay attention. I pushed every button. Talked to every doctor, every nurse. I did everything I could do for Kate, but I feel the system failed. These people are supposed to be the death experts, I thought, but they were the ones who were surprised.”
The day before Kate died, I picked up the kids from school for lunch. On the way home, I asked them, “You know Mummy is going to die, right?”
“Yup,” they said. “When?”
“I don’t know,” I said, “but it will probably be in the next couple of days.”
They nodded, then asked, “What’s for lunch?”
They had lunch, then went back to school.
Twenty-four hours later, they came home for lunch again, and watched their mother take her last breath.
I have said to everyone who will listen that I thought there was a breakdown between the oncological care and the palliative care. One doctor told me that this was a problem that “everyone is talking about” (i.e., major topic of cancer conferences worldwide).
“Stop talking about it, and start doing something about it,” I said.
This is true, the grief counselor said. It’s a big part of their mission, etc. etc.
But it doesn’t matter any more, I said. Kate died. They missed their chance to help her.
What matters now, to me, is transitioning to the future.
Helping the kids make that transition.
Getting away from crisis living.
(But I also remain hyper aware that someone has taken Kate’s place in the queue, and someone will follow her … )
Even now, therefore, I remain on both sides.
We need to do a much, much better job of talking about death and making it a part of the every-day.
Because, it is.
Thanks again, Brooke.
So much could be said about this song. Kate and I said, “They get it.” They being my cousins Brooke and Leah, actually my first-cousin’s second and third daughters. Leah painted a picture of the Toronto skyline, from my wedding weekend, Brooke wrote and recorded this song, and made this video.
Kate was astonished, and I remain so. We were up to something with our marriage, starting over for her, starting big for me.
This song captures it. It was a miracle in 2012 and remains one now.
As Don Cherry would say, Listen up kids. This is how you do it. Make a marriage. Make a family. Live.
It’s a legacy to live up to. Listen up kids. This is how you do it. Grieve.
It’s not the legacy I chose, it’s the legacy I assumed.
Live your life the best way you can. Reality is not a problem, you dig?
Do not live your life in denial or in abstraction or distraction. Acknowledge the knowns and unknowns.
It’s all right, now. In fact, it’s a gas.
Love from the bottom of your heart. It hurts, but it’s the only way. There’s no reward without risk.
You are resilient. Believe.