LOVE’S BOOK– Recent observations from chemo base camp, part 4

Part of the THIS IS THE MOMENT series.

October 5th, 2015

I had my fourth round of chemo two days ago. After each of the first two rounds, I experienced one day of fever, and several days when all I could do was lie down and sink into the exhaustion I felt, and my uselessness. Then, on my third round, the fever never manifested. I waited for it…never felt sure what was coming…but it left me well alone.

That was the upside. In exchange, unfortunately, I now deal with two new side effects that are almost as paralyzing as fever—though less scary. The first is a type of peripheral neuropathy caused by one of the drugs I’m administered (Oxaliplatin) that causes hypersensitivity to cold and even cool objects, drinks, foods, even breezes, and presents like pins and needles jabbing your hands and feet (in my case, mostly my hands), and a weird, if occasional, feeling of cramping in my face and lower legs, and something I’d compare to electric shocks. Luckily, avoiding direct contact with cold and cool things—a metal object in a cool room or a gulp of cool water or anything taken from the fridge, for instance—pretty much limits these effects, which usually last 3-4 days.

The second side effect is linked to the drug 5 FU that is so essential to my treatment. In the range of problems that might be caused by a drug, I never would have come up with this one: it’s called Hand-Foot syndrome or Palmar-Plantar Erythrodysesthesia. Unfortunately for me, 5 FU is the drug that I take for 46 more hours upon leaving the hospital (the one that I carry around in the fanny pack). As I write this, it’s still emptying itself into my port-a-cath. It’s almost empty by now; I have about 4-5 hours left to intake before a nurse removes it at the clinic nearby.

 

palmar-plantar erythrodysesthesia in my left hand

I feel good today. I have energy. Appetite. There are so many things I’d love to do in the house to help my sons who otherwise have to do it all. I’d love to go for a walk, but letting my hands hang or swing against my body is contraindicated. So, aside from gently tapping this keyboard that is a lifeline at times like these, I can barely use my hands. They feel like they’ve been scalded. The symptoms are quite severe. There’s a weird discolouration of my palms and fingers that are striated white and red. All of my fingertips are swollen (this time, I knew to remove my rings before the swelling started). Bending any part of my hands: the finger joints, even trying to close my fists, is painful enough that it interrupts my breathing (I don’t gasp, but quite often, I can’t manage a breath). Holding a spoon, opening a jar, using any kind of hand or finger pressure to do anything is extremely painful. Last time, when the swelling subsided, skin peeled off several of my fingers. My body barely had time to produce a new, paler protective layer of skin before chemo started again.

By a funny, if clearly cruel twist of fate, minimizing the effects of the peripheral neuropathy means avoiding cold and applying heat, while minimizing the effects of palmar-plantar erythrodysesthesia means avoiding heat and applying cooling. Which means that all I can do is apply skin balm and protect my hands with white cotton gloves. I’m stuck with both until these symptoms pass…

John Donne wrote:

Love’s mysteries in souls do grow,
But yet the body is his book.”
(From: The Complete English Poems)

I fell upon these words yesterday. This seems to be the time in my life for considering the tales of living and loving that my body has to tell.

Ramazzotti, Luisa; Body Poem No.7; University of Dundee, Duncan of Jordanstone College Collection; http://www.artuk.org/artworks/body-poem-no-7-91658

Our bodies are most perfect at birth (though even this is not given to all of us), because we have still to live; we have barely begun. But yesterday, after reading Donne’s words, I started jotting down all of the ways that my body has been compromised in my lifetime, excluding commonplace childhood diseases, accidents, scrapes and scratches. I was looking for those body experiences that carry a heavy weight of sense memory and form the tissue of some of my life’s most formative narratives.

I’ve listed many, but not all, of the important ways my body has been harmed over my sixty-year lifetime. These are the ones that immediately came to mind:

– My brand new permanent bottom two front teeth, just freshly grown in (they may have been a few months old), were smashed to bits by a stray hockey stick when I was 6 years old. That was the last time I ever played street hockey. I remember my mouth full of crunchy tooth shards. I remember my mother being very upset (“Oh Mikie !” she moaned). I remember the pain caused by the icy outdoor air reaching the exposed nerves.

Those teeth were never capped. Instead, they were filled with an amalgam that discoloured them. They abscessed twice. I lived my whole life with small, darker lower front teeth. It’s really only since the advent of video cams and smart phone videos that I realize how prominent they are when I speak—but disappear when I smile.

Cohen, Harold; Standing Figure; Arts Council Collection; http://www.artuk.org/artworks/standing-figure-63243

– The bride of Frankenstein look I had for a few years, after having thyroid surgery (a partial thyroidectomy) at 14, in third year high, which left a 4-inch, very red horizontal scar across my neck. Surgical techniques are far more refined now. I remember how stressed and scared I was during the weeks leading up to the actual surgery at the Montreal General. I remember how I felt like a freak. I remember curious students wanting to see the scar that I hid under turtle necks for the first few weeks. I remember how it was one of the first things Sylvain, whom I married, asked me about on our first date, when I was 17. I remember how it all unfolded during some of the most unhappy, turbulent years of my life.

 

– At 24 years old, I said goodbye to my beautiful, perfectly smooth, flat abdomen, when I became pregnant with my firstborn twins, Simon and Jeremy. I weighed 119 pounds the day the pregnancy was confirmed, and 172 pounds when they were born, at term (!). Since that day, my body has carried the stretch marks and the scar from the emergency caesarian section required to save Jeremy, my second twin’s life. Their birth is one of the most intense, happy and traumatic events of my life. I remember the day I went to see my obstetrician for my 6-week post-natal checkup. It was lovely, and sunny (it was July 1983), and after he examined me, I remember saying to him: “I feel like I’ve aged 10 years.” I also remember him very clearly saying: “Hmmm…well…that’s about right.”

 

– Since Christian, my youngest, was two, I’ve carried the small record on my abdomen—two unobtrusive X-like scars—of the removal of my gall-bladder by laparoscopic surgery. A tubal ligation was also done while I was under. It was done on a Friday, and two days later, I was driving my 10- year-old twins to the swimming pool to train, with Christian next to me. The hospital where the surgery was done, The Reddy Memorial, no longer exists. Nor is it possible any longer for two surgeons to coordinate their schedules to save me the experience of a second general anaesthetic. It signalled the end of the pain my gallbladder was causing me. It also signalled the end of my fertility. I remember being so worried that I wouldn’t wake up from the anaesthetic. That I would be one of those terrible cases of women going under for a tubal and disaster striking, leaving them in a vegetative state for the rest of their lives, effectively abandoning their children and mate. I remember being admitted the previous afternoon, and how the staff pretty much left me alone, to sip tea and enjoy the extraordinary luxury of not being a wife or mother for a little less than a day. I remember that I read The Bridges of Madison County that afternoon, front to back, and felt like I’d spent the day at a spa. I remember crying, as I made the decision to have the tubal. There are endings in our lives that we cannot recognize as they occur. This wasn’t one of them.

 

– A far more terrible thing has happened inside my body than the cancer that is now hurting my healthy organs and tissues. For a short time, it turned my body into a tomb. It was the loss, the death in utero of my third son, Gabriel, stillborn 19 months before Christian’s birth, at 29 weeks’ gestation. Of all of the events of my life that were immensely painful, but which left no marks on my body, Gabriel’s stillbirth was the most scorching and, I think, the most transformative. Love and loss are meant for each other. They’re life, really. Losing Gabriel deepened my understanding of this. It was a seminal moment in my life. I think that more than any single event, though it left no visible traces, Gabriel’s death prepared me for this journey with cancer.

Brady, Ian; Untitled; Art & Heritage Collections, Robert Gordon University; http://www.artuk.org/artworks/untitled-105264

– And then, there’s the simple fact of aging—how each of us grows old, if we’re lucky enough to have that chance. I was awoken to this early on. It was the appearance of the first grey hairs scattered among my thick, wavy dark brown hair when I was just 19, that confirmed that I had inherited premature greying from my mother’s side. Those white hairs multiplied furiously when I was in my thirties. My son Christian was born when I was 33, and I remember thinking that I didn’t want him to be raised by someone who looked more like his grandma than his mum. And so, until just last week, when I had it all shaved off, I’ve been trapped in a cycle of colouring my hair (lighter and lighter as the decades passed), not wanting to see, in the mirror, the face of someone whose appearance didn’t match the vitality I had and the image I had of myself.

There isn’t a hair on my head right now, but I hope to see it grown in grey or white someday soon. Last weekend, when I’d just had it all shaved off (by a lovely woman with an electric hair razor at the wig salon), it was stubbly and itchy and tended to catch on the under-webbing of my wig. At home, I was shy about my bald head and kept it hidden under caps. But Christian wouldn’t have it. He wanted to see my hairless head. I haven’t asked him why, but I sense that it was about love, and taking in my vulnerability, and trying to help me feel better about myself by removing any sense of shame or embarrassment about my predicament. And curiosity too: wanting just to SEE, and wanting specifically to see the shape of my head—my skull.

Hearing me grumble with the stubble and the wig, Christian offered to shave my head with a hand razor. And I said yes (I surprised myself). And so, he brought a chair into the bathroom, and got everything he needed ready. I took off my beanie, and Christian’s instant response was to smile and say: “Oh! You have such a nicely shaped head!”. And then he soaked a towel with warm water and placed it gently on my head, once…then again…and then he applied the foam and began shaving my head with a hand razor. We were both very quiet, and Christian’s very calm hands moved over my scalp, and I closed my eyes, the way I do at yoga, and simply let myself be taken care of.

Love’s mysteries in souls do grow,
But yet the body is his book.” 

John Donne

 

 

 

CARRYING YOUR CHILDHOOD WITH YOU

Alexander Milov’s “Love”

“If you carry your childhood with you, you never become older.” 

Abraham Sutzkever

 

I came across this quote one morning.  Scanned it in a flash. It felt so familiar. Almost toss away. A well-worn reference to being young at heart, or to the importance of cherishing my inner child. Trite.

 

And then I read it a second time, and noticed that where my eyes had registered child, they should have read childhood.

It was early and I sat staring at the screen, bothered by the way that word altered Sutzkever’s message.

What did he intend? What does it mean to “become older” ?

I looked him up, and learned that he was a great Yiddish poet and survivor of the Holocaust. Born in Belarus in 1913, he later lived in Lithuania and was sent to the Vilna Ghetto during World War II.

And I thought: well of course, he was 26 when the war began. Memories of his childhood would have sustained him; he would have drawn deeply from that well of familial love, protection and relative innocence—and then the words “you never become older” : those foundational memories acting as a talisman of sorts, warding off the damaging effects of disillusionment, cruelty, suffering and despair in a world made by adults.

Alexander Milov’s “Love”

I’m not sure of any of this. I don’t even know whether he wrote this or spoke it. And so, what I have is what his words mean to me and might mean to anyone else.

I’m puzzled by the phrase.

“If you carry your childhood with you, you never become older.” 

IF ?

There’s no if. We all carry our childhood with us. What matters, then, is only whether its weight supports and grounds us or instead burdens us—and if so, how heavy the burden is.

If I polled a bunch of people asking them to list the distinctive elements of childhood, what would they come up with? Maybe something like:

 

It’s precious because it’s over so quickly;

It’s the most carefree period of a human being’s life;

It’s usually the healthiest period, too;

It’s when humans change the most rapidly;

It’s when we’re most curious and able to learn;

When our minds are most plastic;

It’s the only age of innocence;

It’s when everything seems possible.

 

A positive list. But few of those elements can be carried forward into the future because time runs out on them.

I’m bothered by statements like Sutzkever’s that are predicated on the notion that childhood is the space-time of optimistic possibility from which we slowly but surely lose our way.

I’m bothered by the unintended pessimism of it.

Władysław Wankie. Alone in the Park. ca. 1900

Childhood is frequently the place of our deepest wounds and traumas, and when this is so—especially when this is so— it  becomes either the crushing burden that stunts us for life, or else a powerful agent of resilience; of growth through experience.

I resist the implications of Sutzkever’s message and others like it because I don’t believe that a happy childhood is a sine qua non for a happy life.

I think it’s probably true that:

Anybody who has survived his childhood has enough information about life to last him the rest of his days.”

― Flannery O’Connor, Mystery and Manners: Occasional Prose

The wryness of this makes me smile.

I see childhood as a crucial period of growth on a lifelong transformative continuum.

Penelope and Graeme, photo by Anne Hildebrand

We speak of childhood as an idyll, but I think that our vulnerability in childhood is one of its most poignant dimensions.

Watching my grandchildren Penelope (four), and Graeme (two), grow up is a daily reminder of this. While I feel all kinds of strong impulses to protect and shelter them, I believe that this same vulnerability  is childhood’s precious bridge to adulthood. From our places of shelter and support, we learn to go out into the world and live fully.

Why wish to never become older?

Just a few months ago, as her father—my son Jeremy—was putting her to bed, Penelope had a moment. Lying above the blankets, her lovely eyes welled up and she turned to her father and said:

“I miss myself when I was a baby.

Oh papa, I’m so tired.”

Imagine that.

Maybe she felt old that day.

Maybe she has already begun to understand that she’s leaving her childhood behind a little bit every day.

The next morning, she woke up rested, happy and looking forward to what the day might bring. Four years old and fresh as a daisy.

She and her brother do this every time they go out into the world and gather experience, as they, like their parents, constantly reinvent themselves and grow older together.

Penelope and Graeme looking for the squirrel, fall 2015, photo by Anne Hildebrand

 

Because never in my entire childhood did I feel like a child. I felt like a person all along―the same person that I am today.”

― Orson Scott CardEnder’s Game

A note about the photos of Alexander Milov’s gorgeous sculptures:

Gripping Sculpture At Burning Man Reveals The Harsh Truth About Adulthood

Published sept. 2015

“This year, the “Burning Man” festival in Nevada featured its first artistic piece from Ukraine. Alexander Milov’s “Love” was the first Ukrainian piece to receive a festival grant in 30 years. The sculpture consists of two hollow, metal frame human silhouettes, one man, one female, sitting back to back. Sculptures of children touch inside of them (and light up at night).

“It demonstrates a conflict between a man and a woman as well as the outer and inner expression of human nature,” Milnov explains. “Their inner selves are executed in the form of transparent children, who are holding out their hands through the grating. As it’s getting dark (night falls) the children start to shine. This shining is a symbol of purity and sincerity that brings people together and gives a chance of making up when the dark time arrives.”  “