Guest Blog from Bernadette Howell

Going to dark places when we prefer to stay in the light

April 10, 2024

Breaking silence. Confronting clergy abuse. 

I have no desire to bring anyone to dark places if there isn’t a need. 

But there is a need.

Susan Doherty is a Montreal based author who also agrees that there are times when it is necessary to go to these places. She has just published her third novel on what is a very difficult subject. 

Her book is called “Monday Rent Boy” published three weeks ago on March 19, 2024, by Penguin Random House. 

This author has courageously chosen to portray the topic of child sexual abuse, highlighting the appalling consequences both for those who have suffered horrendous abuse and also speaking to the far-reaching affects of child abuse across today’s digital universe. 

Her story is a tale of two young Catholic altar boys, sexually abused by their priest.

This book is described by Jamie Portman of the Vancouver Sun as a “lacerating new novel about child sexual abuse and its aftermath”. 

In her interview with the Vancouver Sun, Susan Doherty shares: 

“It’s kind of like a car crash where you do slow your car down, but you don’t always look because you’re too afraid of seeing the mangled faces.” 

She then goes on to say, “Yet it you don’t talk about these things, the situation never improves.”

I could not agree more.

As you can imagine, I was naturally keen to read this novel given the review in the Vancouver Sun but also because the author’s comments touched on so many things I believe and have been attempting to address for years, most recently through my blog. 

Susan Doherty grew up Catholic. 

“Everyone who wore a Roman collar was above us” she shares, describing how this in itself is a “prime principle of clericalism”. And not only a prime principle but a “shattering” one. 

She also speaks of how “if we deny human beings their sexuality, it leads to a distorted life” adding her own frustrations with the Catholic Church’s “absolutely hypocritical stance on homosexuality”.  

My exact thoughts. 

The hypocritical behaviour of many clergy who do one thing in private themselves but who then publicly preach against it is compounded when the Catholic Church then additionally labels homosexuality as “intrinsically disordered”.

What is in fact disordered, a belief that many uphold, is the repression of one’s innate sexuality so as to become a celibate priest for life. 

Homosexuality, as with heterosexuality, allows the natural expression of human beings to care for and love one another. 

Mandated celibacy, on the other hand, stunts and represses sexual development, demanding that the priest additionally live a life devoid of physical intimacy of any kind.

But back to Susan Doherty’s book... 

For those who have suffered sexual abuse as a child, and especially for readers who have suffered clergy abuse, this book may be hard for you to read. You may find many parts triggering and I do wish to forewarn you of this and share this with you up front.

Or, you may perhaps feel validated that this author, and now the wider audience of readership, actually get a glimpse into what you went through as a child, of what you could not talk about then, and perhaps cannot talk about now, things few people will ever understand. 

You will need to discern for yourself if this is a book you wish to read...

To others, while you may prefer to veer away from reading about a topic that feels very dark, I invite you to be open to what you can learn, and how sometimes going to these darker places when you prefer to stay in the light is a way of honouring and supporting those who have suffered clergy and childhood sexual abuse. And potentially leading you into taking greater action. 

Child sexual abuse is such an horrific reality that I feel like saying we all have a moral duty to read Susan Doherty’s book.

Clergy sexual abuse forms a very large part of this reality. It is interesting that this author chose to specifically write this story based on two Catholic children, altar boys, sexually abused by the priest.  

No matter who the perpetrator however, this could be the story of children who live down the block from you…or even next door.

When reading “Monday Rent Boy” I found that each evening, I did not return to pick up where I left off the day before with quite the same gusto that I might with some other more lighthearted form of fiction or story telling. 

But this was only because this subject is so very real. And because, barely two months ago, I sat in court for the first time and heard John Doe speak so bravely of his own molestation and rape. I additionally then also witnessed and observed other men who came forward in their support, sharing their own experiences. Several of them had been abused while in the supposedly coveted role of being privileged young altar boys.

Consequently, not only did I have to continue reading “Monday Rent Boy” each evening, I wanted to. 

Susan Doherty writes as though she knows all the ‘ins and outs’ of how predator priests operate. 

She evokes the fear. She details the manipulation. She conjures the sinister overtones of the grooming process. 

Through her literary style, she introduces us to and helps us to understand the violence of silence and secrecy.  

This author comes across as genuinely sensitive. She writes of how both these boys were each coaxed into believing they were being offered a form of love and care. Vulnerable and needing both attention and affection, so often missing due to family and home circumstances, these two boys in Doherty’s story, as in real life, each believed the priest and naturally, fell prey to his manipulation and lure. 

This author knows and writes of how “evil people look exactly like the good people” and of how “the predator always knows who is unprotected.”

Her sensitivity continues beyond the terrible wounding that a child endures. 

She understands that, in it’s complexity, this wounding carries on through teen years and into adult life. 

Susan Doherty uses a phrase in her story that I often hear victim-survivors share – that they are “walking through life pretending to be alive.”

“Monday Rent Boy” essentially starts out as a story of two young boys, bonded through their friendship and their boyish misbehaviours, later to be bonded by their unspoken common secret, that of both being sexually molested and abused by the priest, both believing they were each the 'favoured’ boy. Such is how perpetrators manipulate those they prey upon. 

Not unlike the pupils from North Vancouver’s Holy Trinity Parish School who privately called Fr. John Kilty “Guilty Kilty”, the priest in this book, Fr, Dante Ziperto is privately nicknamed “Zipper”. 

I personally find it triggering to contemplate this name...

If I am to offer true and honest opinion, I would have to share that I was somewhat disappointed as we came to the end of the book, not knowing if this predatory priest ever received just punishment for his heinous acts. I do not wish to say more nor spoil any reading for others, but as I reflected on this later, perhaps the way in which the author does in fact deal with this priest’s departure from the story is perhaps how it typically is in real life? 

I will also say, and with my apologies to the author as titles certainly can be tricky, but I’m not sure I like the title. The term ‘rent boy’, for me, personally conjures up images of post-pubescent boys and younger men being paid for sex. 

Ultimately, this is in fact what is happening to these two young altar boys. They are being 'paid' for their submission to sexual acts but acts in which they have no choice. They are being paid for their silence. And for the violence perpetrated on them, whether with gifts or with money. 

But what Arthur and Ernie, the two young boys in this story are subjected to is SO much more.  It is clergy and child-sexual abuse. Period. 

My brother-in-law who lived in the U.K. and where this story is set, was a social worker. He would sometimes speak of his work with young 12-year-old boys lured down to London for prostitution rings. Is this the same as child-sexual abuse? 

Absolutely it is. 

I personally just find the term ‘rent boy’ does not sit well with me. In any context. Not for anyone and not in this story. And most of all, not for young children initially lured by a priest, someone they are taught to be in awe of, who is their designated religious, spiritual and moral leader, and who then molests and abuses them.

But this small detail of title aside, this novel “cuts painfully close to the truth” and is a story that has to be read. 

The book is written in alternating first person narratives which add pace and texture and character along with the additional, and most welcome voice later on in the novel of a character who brings hope to the devastation we read about and witness.

Broadly speaking, while it is a story that recounts two individuals' lives, destroyed in childhood, struggling as teens and then as adults, it shows us how resilience comes through – whether that resilience is influenced by good or by evil. 

Doherty portrays the reality of evil in ways that will likely shock you but will also help to wake you up, as it did me, to the realities of the world of child sexual abuse, to pornography rings and to the world of the ‘dark web’. She does an amazing job of weaving the interplay of good and evil between the two main characters, Arthur and Ernie, each who are born innocent young children.

Doherty also addresses something I frequently hear from victim-survivors: how ‘shame and blame’ is thrown back at those who are victimized. 

At one point, Ernie, as a teen, decides to tell the church warden what has been happening. But he is, of course, not believed. 

Ernie comes from a difficult home situation, growing up in a family that has experienced a lot of dysfunctions. Subsequently, he is seen as ‘troublesome’ and berated for what are believed to be 'lies'. 

This only heightens the shame and furthers the boys’ silence. 

Arthur, upon reflecting on this, expresses that Ernie has “ripped open the stitches” concealing their secret life in the hope of putting a stop to the abusers, but has been “the one blamed instead.”

I have heard of this too many times...

Susan Doherty tackles it all. 

The abuse. The challenge to survive. The possibility of hope. 

She also tackles (and her knowledge of this blew my mind) the whole topic of the “dark web’, weaving into her story the larger, deeper and wider impact of child sexual abuse on a global level. 

In the ‘Author’s Note’ at the end of her book she writes: 

“Less known is that unaddressed child sexual abuse has had a huge role to play in the current crisis of child pornography on the internet as well as on the even more insidious darknet, a Pandora’s box where new web browsers – Tor, i2P and FreeNet – and untraceable cryptocurrencies provide near-perfect anonymity for people seeking depraved acts of sexual violence.”

She finishes off by adding:

“One final thought: imagine if an influential institution like the Catholic Church – with more than 1.3 billion members – had put a stop to child sex crimes in the years and decades before the internet. Might the current crisis of online predation and pornography of minors have been mitigated?”

This is a powerful reminder of how we, society at large, and to include so many Catholics still turning a blind eye, have allowed a very powerful institution, the Catholic Church, to contribute to the crisis of online predation and the pornography of minors.   

One last comment....

Susan Doherty speaks in her ‘Authors Note’ of the U.K. entertainer and pedophile, Jimmy Savile who abused upward of 1,000 children over the course of 50 years, a fact that came to light after his death in 2011 (see Netflix “Jimmy Savile: A British Horror Story” 2022) 

In speaking of this, Doherty questions the societal mindset that was in place to allow such rampant behaviours to go unchecked for half a century. 

To this I add the following:

We too must question: what is the state of our current societal mindset that, in this present day and age, we stand by and watch the Catholic Church, the largest non-profit organization in the world, allow such rampant behaviours to go unchecked? 

Thank you for reading – and thank you to Susan Doherty for her courage in writing this novel.

Bernadette 

CORROBORATING STORIES FOR Monday Rent Boy

https://www.cnn.com/interactive/2023/12/us/johnny-gosch-missing-iowa-boy-cec-cnnphotos/

 Colonel Michael Aquino Charlie Kerr Lawrence King and the case of Johnny Gosch

AMY  Child Rescue Coalition

https://childrescuecoalition.org/educations/amys-story-the-raw-real-unedited-truth-about-child-trafficking/

 

Rainn Organization. Rape, Abuse and Incest

https://www.rainn.org/survivor-stories-categories/male-survivors

 

Living Well Testimonials

https://livingwell.org.au/from-men/stories-of-mens-experience/three-accounts-of-mens-experiences-following-child-sexual-abuse/

 Father Marcial Maciel, the founder of the Legion of Christ, a Roman Catholic congregation in 1970s was found guilty of sexually abusing at least 60 minors and fathered six children with three women.

 French Catholic coverup of widespread child abuse

https://www.aljazeera.com/news/2021/10/5/french-catholic-church-abused-216000-children-since-1950-report

Jimmy Savile

https://www.theguardian.com/media/2014/jun/26/jimmy-savile-sexual-abuse-timeline

Benjamin Faulkner and Patrick Falte

https://www.justice.gov/opa/pr/four-men-sentenced-prison-engaging-child-exploitation-enterprise-tor-network

Matthew Falder

https://www.theguardian.com/technology/2018/feb/19/dark-web-paedophile-matthew-falder-jailed-for-32-years

Ashley Paul Griffith of Brisbane, Australia is facing more than 1,600 child sex offenses, including rape and indecent treatment of a child. Police allege the 45-year-old committed the offenses between 2007 and 2022 while working in 10 childcare centers in Brisbane, one in Sydney, and one overseas.

PLAYLIST for MONDAY RENT BOY

Music Playlist for Monday Rent Boy

 

Dirty Old Town

https://www.youtube.com/watch?v=s11BuatTuXk

 

Imagine/ John Lennon/violin cover

https://www.youtube.com/watch?v=X0zLIEy7NcQ

 

White Rabbit

https://www.youtube.com/watch?v=pnJM_jC7j_4

  

Question/Moody Blues

https://www.youtube.com/watch?v=XJI8M9619IQ

  And did those feet in Ancient Times

https://www.youtube.com/watch?v=MKRHWT6xdEU

Trip to the Fair

https://www.youtube.com/watch?v=bKh4kqMiV-I

Mordred’s Lullaby

https://www.youtube.com/watch?v=ny7NZPfl0l4

 

Lullaby of Woe/Ashley Serena

https://www.youtube.com/watch?v=ohNpf4VnlP8

  

Hush Little Baby/Ashley Pisleaga

https://www.youtube.com/watch?v=RzZMchk7SuU

  

Bayu Bayushki

https://www.youtube.com/watch?v=lA6diOlG0s4

  

Pan’s Labyrinth/Lullaby

https://www.youtube.com/watch?v=19bBGxf5k6k

  

Kerie Eleison

https://www.youtube.com/watch?v=v6CRsw2gdcc

The Sound of Silence Harmonica

https://www.youtube.com/watch?v=roCCORRawJM

 

I Am a Rock

 https://www.youtube.com/watch?v=JKlSVNxLB-A

  Fairytale of New York/ The Pogues/Kristy McColl

https://www.youtube.com/watch?v=j9jbdgZidu8

The Lost Children

https://www.youtube.com/watch?v=8gmLHGkmwc4

Be More

https://www.youtube.com/watch?v=R95ILhksGt8

 

 

Barrington Bunny

Martin Bell's short story "Barrington Bunny" found in his book The Way of the Wolf
This is the story of Barrington Bunny...

Once upon a time in a large forest there lived a very furry bunny. He had one lop ear, a tiny black nose, and unusually shiny eyes. His name was Barrington.

Barrington was not really a very handsome bunny. He was brown and speckled and his ears didn't stand up right. But he could hop, and he was, as I have said, very furry.

In a way, winter is fun for bunnies. After all, it gives them an opportunity to hop in the snow and then turn around to see where they have hopped. So, in a way, winter was fun for Barrington.

But in another way winter made Barrington sad. For, you see, winter marked the time where all of the animal families got together in their cozy homes to celebrate Christmas. He could hop, and he was very furry. But as far as Barrington knew, he was the only bunny in the forest.

When Christmas Eve finally came, Barrington did not feel like going home all by himself. So he decided he would hop for awhile in the clearing at the center of the forest.

Hop. Hop. Hippity-hop. Barrington made tracks in the fresh snow.

Hop. Hop. Hippity-hop. Then he cocked his head and looked back at the wonderful designs he had made.

"Bunnies," he thought to himself, "can hop. And they are very warm, too, because of how furry they are."

(But Barrington didn't really know whether or not this was true of all bunnies, since he had never met another bunny.)

When it got too dark to see the tracks he was making, Barrington made up his mind to go home.

On his way, however, he passed a large oak tree. High in the branches there was a great deal of excited chattering going on. Barrington looked up. It was a squirrel family! What a marvelous time they seemed to be having.

"Hello, up there," called Barrington.

"Hello, down there," came the reply.

"Having a Christmas party?" asked Barrington.

"Oh, yes!" answered the squirrels. "It's Christmas Eve. Everybody is having a Christmas party!"

"May I come to your party?" said Barrington softly.

"Are you a squirrel?"

"No."

"What are you, then?"

"A bunny."

"A bunny?"

"Yes."

"Well, how can you come to the party if you're a bunny? Bunnies can't climb trees."

"That's true," said Barrington thoughtfully. "But I can hop and I'm very furry and warm."

"We're sorry," called the squirrels. "We don't know anything about hopping and being furry, but we do know that in order to come to our house you have to be able to climb trees."

"Oh, well," said Barrington. "Merry Christmas."

"Merry Christmas," chattered the squirrels.

And the unfortunate bunny hopped off toward his tiny house.

It was beginning to snow when Barrington reached the river. Near the river bank was a wonderfully constructed house of sticks and mud. Inside there was singing.

"It's the beavers," thought Barrington. "Maybe they will let me come to their party."

And so he knocked on the door.

"Who's out there?" called a voice.

"Barrington Bunny," he replied.

There was a long pause and then a shiny beaver head broke the water.

"Hello, Barrington," said the beaver.

"May I come to your Christmas party?" asked Barrington.

The beaver thought for a while and then he said, "I suppose so. Do you know how to swim?"

"No," said Barrington, "but I can hop and I am very furry and warm."

"Sorry," said the beaver. "I don't know anything about hopping and being furry, but I do know that in order to come to our house you have to be able to swim."

"Oh, well," Barrington muttered, his eyes filling with tears. "I suppose that's true-Merry Christmas."

"Merry Christmas," called the beaver. And he disappeared beneath the surface of the water.

Even as furry as he was, Barrington was starting to get cold. And the snow was falling so hard that his tiny, bunny eyes could scarcely see what was ahead of him.

He was almost home, however, when he heard the excited squeaking of field mice beneath the ground.

"It's a party," thought Barrington. And suddenly he blurted out through his tears, "Hello, field mice. This is Barrington Bunny. May I come to your party?"

But the wind was howling so loudly and Barrington was sobbing so much that no one heard him.

And when there was no response at all, Barrington just sat down in the snow and began to cry with all his might.

"Bunnies," he thought, aren't any good to anyone. What good is it to be furry and to be able to hop if you don't have any family on Christmas Eve?"

Barrington cried and cried. When he stopped crying he began to bite on his bunny's foot, but he did not move from where he was sitting in the snow.

Suddenly, Barrington was aware he was not alone. He looked up and strained his shiny eyes to see who was there.

To his surprise he saw a great silver wolf. The wolf was large and strong and his eyes flashed fire. He was the most beautiful animal Barrington had ever seen.

For a long time the silver wolf didn't say anything at all. He just stood there and looked at Barrington with those terrible eyes.

Then slowly and deliberately the wolf spoke. "Barrington," he asked in a gentle voice, "why are you sitting in the snow?"

"Because it's Christmas Eve," said Barrington, "and I don't have any family, and bunnies aren't any good to anyone."

"Bunnies are, too, good," said the wolf. "Bunnies can hop and they are very warm."

"What good is that?" Barrington sniffed.

"It is very good indeed," the wolf went on, "because it is a gift that bunnies are given, a free gift with no strings attached. And every gift that is given to anyone is given for a reason. Someday you will see why it is good to hop and to be warm and furry."

"But it's Christmas," moaned Barrington, "and I'm all alone. I don't have any family at all."

"Of course you do," replied the great silver wolf. "All of the animals in the forest are your family."

And then the wolf disappeared. He simply wasn't there. Barrington had only blinked his eyes, and when he looked-the wolf was gone.

"All of the animals in the forest are my family," thought Barrington. "It's good to be a bunny. Bunnies can hop. That's a gift." And then he said it again. "A gift. A free gift."

On in the night Barrington worked. First he found the best stick he could. (And that was difficult because of the snow.)

Then hop. Hop. Hippity-hop. To beaver's house. He left the stick just outside the door. With a note on it that read: "Here is a good stick for your house. It is a gift. A free gift. No strings attached. Signed, a member of your family."

"It is a good thing that I can hop, he thought, "because the snow is very deep."

Then Barrington dug and dug. Soon he had gathered together enough dead leaves and grass to make the squirrels' nest warmer. Hop. Hop. Hippity-hop.

He laid the grass and leaves just under the large oak tree and attached this message: "A gift. A free gift. From a member of your family."

It was late when Barrington finally started home. And what made things worse was that he knew a blizzard was beginning.

Hop. Hop. Hippity-hop.

Soon poor Barrington was lost. The wind howled furiously, and it was very, very cold. "It certainly is cold," he said out loud. "It's a good thing I'm so furry. But if I don't find my way home pretty soon I might freeze!"

Squeak. Squeak. . . .

And then he saw it-a baby field mouse lost in the snow. And the little mouse was crying.

"Hello, little mouse," Barrington called.

"Don't cry. I'll be right there." Hippity-hop, and Barrington was beside the tiny mouse.

"I'm lost," sobbed the little fellow. "I'll never find my way home, and I know I'm going to freeze."

"You won't freeze," said Barrington. "I'm a bunny and bunnies are very furry and warm. You stay right where you are and I'll cover you up."

Barrington lay on top of the little mouse and hugged him tight. The tiny fellow felt himself surrounded by warm fur. He cried for awhile but soon, snug and warm, he fell asleep.

Barrington had only two thoughts that long, cold night. First he thought, "It's good to be a bunny. Bunnies are very furry and warm." And then, when he felt the heart of the tiny mouse beating regularly, he thought, "All the animals in the forest are my family."


Next morning, the field mice found their little boy, asleep in the snow, warm and snug beneath the furry carcass of a dead bunny. Their relief and excitement was so great that they didn't even think to question where the bunny had come from.

And as for the beavers and the squirrels, they still wonder which member of their family left the little gift for them that Christmas Eve.

After the field mice had left, Barrington's frozen body simply lay in the snow. There was no sound except that of the howling wind. And no one anywhere in the forest noticed the great silver wolf who came to stand beside that brown, lop-eared carcass.

But the wolf did come.

And he stood there.

Without moving or saying a word.

All Christmas Day.

Until it was night.

And then he disappeared into the forest.

Gord Windross

Not everyone can feel things as deeply as you. Most people their feelings are bland, tasteless. They’ll never understand what it’s like to read a poem and feel almost like they’re flying, or to see a bleeding fish and to feel grief that shatters their heart.

Gary Juliann Too Bright to Hear Too Loud to See

Karma and the number 11

Thich Nhất Hahn was born on the 11th of October, 1926 and died on January 22, 2022. Both his birth and death dates resolve to the number 11 in numerology.


The number 11 is considered a Karmic number associated with spiritual awakening. This mystical number refers to insight, higher energy, inspiration, and creativity to those who embrace the symbolism of numbers. Master Number 11 is concerned with spiritual illumination. Often a Number 11 will have an instinctive understanding of metaphysical matters.

 

Nhất Hahn was a Vietnamese Buddhist monk who was exiled in the 1960s for his stance against war. He embraces peace. As an influence in my own life, rather than embrace spirituality and religion, he spoke about universality, awareness, and being “awake.”

I understood when he spoke about living a conscious life, attuned to energy of human beings, and trees, and water, and sand. That everything has a vibration. Nhất Hạnh was active in the peace movement and embraced deep ecology, promoting nonviolent solutions to conflict and raising awareness of the interconnectedness of all elements in nature.

The Buddha taught that there is no birth; there is no death; there is no coming; there is no going; there is no same; there is no different; there is no permanent self; there is no annihilation. We only think there is.” That understanding, he wrote, can liberate people from fear and allow them to “enjoy life and appreciate it in a new way.”

I have followed Michael Singer, and Deepak Chopra, and Eckhart Tolle, Andy Puddicome, Don Miguel Ruiz, all members of the ideology of awareness, of soul work, of not living an ego-driven life.

Michael Singer wrote: “What you realize at some point is that you're not; that the moment in front of you that's unfolding is no different than all the zillions of other moments that aren't in front of you that are unfolding in accordance to the laws of nature, the laws of creation. You start to practice saying, "I don't want to check inside of me first to see what I want and what I don't want. I want to pay attention to what the universe is creating in front of me just like it's creating everywhere where I'm not, and let me see how I can participate in that, be part of that instead of interfering with it with my desires and my fears." That's living from a place of surrender.

 

Also from Singer: “Samskaras is a Sanskrit word. It's used in the yoga world, because that's what's been used for thousands of years. It just basically means when an event happens to you and you either really, really don't like it or you really, really do like it, you don't let it go. If you don't like it, you push it away because you don't want to experience it and that is typical psychology—suppression, repression, resistance. Call it what you want. You just push it because you don't want it coming so close to you and when you do that, it stays inside of you, because you didn't let it go.

 

Likewise, when things happen to you that you really, really like, you don't want to let them go, so you do what Buddhists call clinging. You cling to them. You hold onto them inside so you can feel them again, experience them again in your mind and so on.

Those are what samskaras are, these pieces that you've held inside of you from your past. And what happens is they keep coming back up and they keep interfering with your ability to see what's happening now because they get stimulated by—they react, if you will, to the moments that are unfolding in front of you. And the next thing you know, you're not experiencing what's happening in front of you, you're experiencing your reaction to what's happening in front of you. Eventually, you will find that this is quite disturbing, and it keeps you from living a full life and from fully experiencing life.

The question of how to let them go, it turns out is very simple. Doesn't mean it's easy, but it's simple. They will come up periodically on their own, and what you'll find is that you'll have an opportunity to either push them back down, cling to them, keep them, or to let them pass through.

 

From Tolle: One night in 1977, at the age of 29, after long periods of depression, Tolle says he experienced an "inner transformation".

“I couldn't live with myself any longer. And in this a question arose without an answer: who is the ‘I' that cannot live with the self? What is the self? I felt drawn into a void! I didn't know at the time that what really happened was the mind-made self, with its heaviness, its problems, that lives between the unsatisfying past and the fearful future, collapsed. It dissolved. The next morning I woke up and everything was so peaceful. The peace was there because there was no self. Just a sense of presence or "beingness," just observing and watching

 

 

 

 

 

 

 

stem cells save lives

Stem-cell therapy

 

My story begins at 3 p.m. on February 25, 2015. I’m referring to my crisis, a Greek word that connotes the “turning point” of a disease, when an important change takes place indicating either recovery or death. We’ve all had such instances, and this was the most significant of mine – a curveball that became a moment of enlightenment.

While attending a conference in Boston, I was shivery and cold. But that week in New England, 239 centimetres of snow had tumbled from the sky, and the downtown streets were freakishly lined with three-metre walls of snow. I convinced myself I was cold because of the weather. I was shaking so dramatically, I left the conference hall for my hotel room, and filled the bathtub with hot water. The hot bath seemed to do the trick, except that as I was dressing to return to the conference, my body broke into a profound sweat. My ankles, thighs, hands, and forearms were sweating. I was the Trevi Fountain of sweat. And then I was fine, as though something nefarious had simply breezed through my body and left.

Unbeknownst to me, it was my first case of rigors, an extreme reflexive response to exaggerated shivering. It was what the soldiers felt in the wretched wet trenches of the First World War when they had contracted tuberculosis. Sweating is the body’s attempt to cool itself.

 

A long 10 days

After 10 straight days of rigors and night sweats, I went to a walk-in emergency clinic. The doctor asked questions about my personal life, then said, “There is nothing wrong with you. It’s anxiety.” I danced away, feeling as light as a bag of cotton candy. I had ways to deal with stress, I told myself. The engine of my life continued to run smoothly, except that for five months and nine days I had profuse, mattress-soaking night sweats.

 

During that stretch I also had enlarged lymph nodes under my chin, as though a string of pearls had been embedded beneath my skin. I saw three specialists, and had an emergency CAT scan and a bone-marrow biopsy, all of which turned up nothing conclusive. I saw an oncologist who ordered a neck biopsy of the golf-ball sized lymph node under my jaw. Trust me when I say a neck biopsy is not as good as it sounds. Seven needles were inserted into an area extremely close to the carotid artery, causing excruciating pain. Oddly, the pathology report showed no cancer, no leukemia, no lymphoma. It did show complete and total cell death – necrosis – but no diagnosis.

 

This entire time, I was living my life in every normal way: I was about to publish my first novel, and teaching spin classes at 6 a.m., working at the Douglas Hospital in Montreal with patients suffering symptoms of schizophrenia, and caring for my husband, who was battling depression. In hindsight, I was hurtling down a black tunnel, but I had every intention of launching my book, A Secret Music. That single-mindedness has given me great pause. We are able to compensate when we need to, even when the body is sending out a multitude of distress signals. It was as though I had run through a dozen red lights.

 

Gradually, then suddenly

In May, June and July, I did a book tour, ending every evening with four to five hours of extreme night sweats. I had a fever of 103°F at each event, but I was ridiculously happy. The mind is a powerful tool.

 

In August, at our beach house in Kennebunk, I got sick the way Ernest Hemingway says people go broke: gradually, then suddenly. My chills and fever occurred around the clock, instead of only at night, and then, in case I needed a final wake-up call, the right side of my face went numb. I couldn’t feel my gums or my nose. I could no longer wish myself well, or pretend it was stress. My husband and I drove 470 kilometres from Maine to Montreal. I had a fever of 105°F, saw clouds in the shape of angels, and prayed I wouldn’t have a stroke before we got to the hospital. At the border we were the only car, and in triage at the Jewish General Hospital I was the only patient. I had the distinct impression I was travelling first class.

 

I spent the next five days undergoing every conceivable medical test, including bone-marrow biopsies, lumbar puncture, lung scans, MRIs of the body and brain, CAT scans, PET scans, and blood tests. I was taking 4,000 mg of Tylenol a day to combat the fevers. I had visions. My father, who passed away in 2006, appeared several times. Scrawled across his face was the message: Do not come. It’s not your time. Stay and fight.

 

Through process of elimination, I was diagnosed with HLH, a rare autoimmune disease with a death rate of 70 per cent. Hemophagocytic lymphohistiocytosis. It’s a good Scrabble word. It affects one in a million adults. Without treatment, the patient dies of multi-organ failure within 60 days of onset. Nobody knew where I was on that trajectory.

 

The body’s security detail

Your immune system is your security detail. It’s hard-wired to tell the difference between what belongs in your body and what doesn’t. When it spies a villain like a virus, bacteria or a parasite, it finds it, surrounds it, kills it. Your immune system turns on if you have a cold or sore throat, as it’s supposed to, but then it turns off. With HLH, it never turns off. Think of a driverless and powerful John Deere lawnmower in your backyard destroying everything in sight.

 

Once HLH was identified, I was hurried into a chemotherapy protocol that very night.

My children flew in from New York. I had months of regular chemo, as well as intrathecal brain chemo (in which medication is injected into the fluid-filled space between the layers of tissue covering the brain), 32 transfusions of platelets, and a dozen types of intravenous treatments through a catheter that had been sewn into a vein in my neck. I also took high doses of Decadron (dexamethasone), the type of steroid Lance Armstrong used to win the Tour de France. I needed it to win the Tour de Vie.

 

Thankfully, I responded to the HLH protocol, and left the hospital on a sunny day in late October, ready to resume my book events. It was a euphoric time in my life. I enjoyed 77 days of wellness – but then the wheels fell off the tracks. HLH came back with a vengeance, and my organs were threatened. I would need a bone-marrow transplant if I had any hope of survival. Did I have any siblings? Yes, I answered, five. Good, the doctors said, siblings are the best possible match.

 

A surreal feeling

After all that was swirling around me, I had the surreal feeling that I was about to jump through a one-way portal, that I would never be the same again, forever changed by the people I would meet, the endurance test, the lessons I would learn. I was to put my arms around this experience without fear. Don’t they say the steeper the climb, the better the view from the top?

I entered the Royal Victoria Hospital in Montreal on May 15, my sister’s birthday, an auspicious date. Two days after I set up shop in my isolation room – with my weights, my yoga mat, my orange running shoes, and a calendar painted with cardinals so I could strike off each day – I went to pieces. It would be disingenuous to say there weren’t some terrible days. I lay on the floor of the bathroom so nobody would hear me crying as all the seams of my body opened up to let out my distress. Could I run a marathon without any practice? Did I have the stamina to cross the finish line before my body broke down? The doubt, fear, and psychological pain were much harder than the physical pain.

 

Extraordinary properties

Inside your bones is a hollow passage, filled with soft spongy tissue, where your blood is made. That tissue is called bone marrow. The marrow is composed of red blood cells that oxygenate your body, white blood cells that fight infection, platelets that help clot a wound, and immature cells known as stem cells. The body makes stem cells every minute. Stem cells have two extraordinary properties: They multiply like crazy, and they have the ability to become any type of cells in the body, as needed.

The stem-cell team removed all my bone marrow with chemotherapy. Blood cancers like lymphoma and leukemia are treated the same way. The side effects are profound: My hair fell out, my muscles wasted from the steroids, there was a cardboard hat to collect black diarrhea, I had lesions along the digestive tract, I sucked ice cubes to counteract mouth sores. I had near-daily blood transfusions.

Let me tell you, I felt ugly. But my husband arrived every single morning with a cinnamon latte that made me feel beautiful inside.

With chemotherapy, my immune system was eliminated, a process that took several weeks. I had four eerie days when I had zero white blood cells, and no ability to fight infection. Germs of every kind are your fatal enemy, hence the strict isolation.

 

Finding a match

One of my brothers had matched but for genetic reasons was eliminated from contention as a donor. That devastating cancellation required me to be listed on the International Donor Registry to try to find another stem-cell match. That was a terrible time. The clock was ticking. The 60-day window was shrinking.

 

For all bone-marrow transplants, matching occurs through HLA (human leukocyte antigen) typing. HLA are proteins, or markers, found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. The best possible outcome for transplant is when the patient and the donor have 12 identical isomers, a certain type of chemical compound. William Ashby-Hall, a 23-year-old gay British man, was a 12/12 perfect match. There is no payment to the donor; it is done altruistically, out of sheer compassion. I mention his sexual orientation only because the rules for gay donors are highly restrictive in Canada and the United States. The same day William’s HLA typing was entered into the computer system, he was called and asked to save the life of an anonymous Canadian woman. He jumped.

 

On the day of the stem-cell retrieval, William sat in a recliner in a hospital in London, and over a period of eight hours his blood was drawn from one arm into a machine via a plastic tube. The stem cells from his blood were extracted via centrifuge and the blood, minus the stem cells, was returned to his other arm. It’s a procedure called apheresis, and replaces the old way of obtaining stem cells, which was done by inserting numerous large needles into the hip bones and withdrawing bone marrow. Apheresis is pain-free.

 

A Canadian policeman waited in the hallway. After the stem cells, salmon pink in colour, were collected, the officer flew to Canada with the fresh cells, which he brought to the hospital lab for verification. (William’s HLA typing was reconfirmed! Thank goodness.) I waited on the stem-cell unit with an unbridled sense of hope, tinged with dread. Would my body accept his cells? Graft versus host disease (GvHD) occurs when the patient’s organs reject the new stem cells. I’m here to say, it was a success.

 

First patient in Quebec

I was the first patient in the province of Quebec to receive a stem-cell transplant for HLH. The statistic is even more stark, given that most people die before they receive a diagnosis and a chance to be treated.

People have asked me if the ordeal has changed me. I’m still me, of course, but near-death can be an amazing teacher. Every detail about what one desires comes sharply into focus. What has changed is my attempt to preserve the sanctity of all that I hold dear. I guard my human possessions. People have also cited my resilience. No. A thousand hands lifted me back to where I am now.

I began to write thank-you letters to my donor, despite the fact that no contact can happen for two years; the death rate is too high. The first letter simply said, “It’s been 100 days, the first hurdle. I’m alive.” The second letter said, “It’s been one year, thank you for the miraculous gift of your stem cells.” The third letter said, “I would love to look you in the eye and thank you for giving me a second chance at living my life.”

William contacted me 27 months after my transplant. I met him in London on January 17, 2019, surrounded by my family. It was one of the truly transcendent moments of my life.

 

- 30 -

Forgiveness

From Rabbi Lisa Grushcow’s Yom Kippur message…

There is a Spanish story told of a father and son who became estranged. When he was old enough, the son left home; after some time the father set off to find him. He searched for months, in little towns and big cities alike. Finally, in a last desperate effort to find him, the father put an ad in a Madrid newspaper: The ad read: “Dear Paco, meet me in the town square at noon one week from today. All is forgiven. Your father.” One week later, at noon, in the town square, 800 people named Paco showed up, looking for forgiveness and love from their fathers

VACCINE

Humans are social beings. We are hard-wired to share, touch, nurture, communicate, emote. Without human contact we fall ill with mental and physical illnesses. Hugs strengthen the immune system. Covid-19 has forced a physical distancing, and yet we are not alone. Can you recall any other phenomenon that has united the globe in a grand awakening of our higher consciousness? Darwin’s principles of competition, survival and reproduction are alive and well.

 

For many of us, Wednesday, March 11, 2020 represents the day Covid-19 went from a global emergency to a pandemic. Planes were cancelled as Prime Minister Trudeau ordered Canadians to return home, ensuring some would be stranded as international borders were closing by the hour. Weeks earlier a major Texas film festival, SXSW 2020, cancelled its annual event after worried headliners began to pull out—the beginning of extensive closures for every type of live performance. It was whispered that the Olympics might be rescheduled. The Olympics! That week in March, we were all asked to stop, stand still and social distance because of a threat so intangible it verged on the surreal. The mythic quality became harsh reality when a parade of unidentified coffins wound through the streets of Bergamo, Italy, a frightening sign of what was to come. In January, China had built a dedicated hospital in seven days to isolate the afflicted, deeply concerned by the alarming levels of severity and spread.

 

That should have been the alarm bell that woke the world. It wasn’t. In mid-March, we Canadians were happy to quarantine if we had been travelling abroad, lulled into a false sense of fantasy because the Director-General of the WHO told us, “Now that the virus has a foothold in so many countries, the threat of a pandemic has become very real. But it will be the first pandemic in history that can be controlled. The bottom line is that we’re not at the mercy of the virus.” Those comforting mislaid words contributed to a sluggish approach by many a world leader, a reluctance to accept that containing Covid-19 would entail drastic measures.

 

On that fateful March 11, when a stampede of travelers rushed the airports, I was in London having lunch with my British stem cell donor, William, and his husband Michael. Like most joyous reunions, there was hugging and kissing, and plenty of clinking of glasses—DNA was shared by all. The following day William was rushed to hospital by ambulance with breathing issues. He had also lost his sense of taste and smell, symptoms as yet unidentified with coronavirus. He was not tested. There were no tests. Boris Johnson had the mistaken idea that transmission was containable in the UK, underestimating the threat even though Italy and Spain were exhibiting a rising national crisis of deathly contagion. William called me in a panic. Had I too fallen ill? I drove to a Montreal test site near Place-des-Arts and was ushered into a white tent by a police officer. Six days later I received an email, “Negatif.” I had already reconciled that when God sent William Ashby-Hall to save my life, he would not send the same man to kill me. 

 

As March turned into April and the worldwide cases continued to surge there was an oxygen-sucking aspect to our creativity. The perilous unknown momentarily overtook the need to write our own stories. Our attention was diverted to the untenable situation of people dying alone or saying goodbye through mobile devices. The loneliness of death was a relative newcomer in our collective consciousness. Nothing seemed relevant when senior care homes were decimated, tourist meccas like New York City and Venice had become ghost towns, freezer trucks were quietly parked outside hospitals to house the body bags too numerous to be processed by funeral homes. The ghastly implications side swept our voices. We stayed home and baked bread, home-schooled our children, and happily paid for Crave and Netflix. We shared memes that made us laugh. Zoom became a new verb. Thank God we eventually stopped hoarding toilet paper.

We reconciled that Mother Nature had called us to become accountable for our disregard of the oceans, the skies, our excessive use of fossil fuels. The Himalayas were suddenly visible from great distances. There was a silver lining, we all said. Our planet might be in recovery for the next generation, after all.

 

We were asked to distinguish between essential, necessary and expendable.  Alcohol was considered essential, but crossing the border to be at the birth of a first child was not.  Thankfully nurses, cashiers, orderlies, shelf re-stockers, and medical teams were and are essential. The material world has taken a back seat to the substantial, illuminating what is and what isn’t expendable: our human possessions.  Will it be sustainable?

In the midst of surging cases, George Floyd’s homicide from traumatic asphyxia gripped America, and then the entire world. His brutal death unleashed an essential outcry about human rights that will reverberate for decades. We can thank the pandemic for this forward propulsion. That echo may very well dictate the American presidency, regardless of a final tally of votes.

 

Public events, live theater, schools, award ceremonies, book fairs, workshops, lectures and residency-scholarships were cancelled. Movie theatres, bars and restaurants were shuttered. Unemployment numbers began to enter the stratosphere. Yet history has shown that we have the capacity for great resilience.  Everyone suffers, it’s how we react to our suffering that dictates the outcome. Inch by inch we got back to the business of being writers, athletes, and architects, caretakers of our stories, caretakers of our purpose driven lives.

 

As we approach the six months mark, each country grapples with measures to contain the spread. Canada has imposed staggering fines for individuals who break quarantine. People caught maskless in Indonesia are forced to lie in a coffin to atone for their selfishness. In India, baton-wielding police officers have beaten the flouters of curfew and physical-distancing. Our desperate need to socially integrate has made us law-breakers. Meanwhile, vaccine trials have been expedited while vetting for safety and side effects, no easy task when speed trumps efficacy.

 

A vaccine carries the coronavirus genes in order to deliver them to human cells. The intention is to incite a protective immune response that would be “awakened” if the actual coronavirus were to invade and infect a human being. Our immune system would then produce antibodies against the virus. North Americans are six months into pandemic mode. In that tiny stretch of time 37 vaccines are in clinical trial, and a further 91 are in preclinical active research with animal testing. On the clock, the greatest scientific minds have been tasked to save us from a further thinning of the ranks. Once the air is out of a balloon, is such a task even feasible? How will small towns in rural South Africa, or war-torn Syria be able to offer their citizens this magical elixir? Can a dictator be counted on to save his countrymen? Perhaps the solution cannot be found in science.

 

In the absence of a resolution from a petri dish, we fall back on hope, compassion, and kindness, supplies that are virus-resistant, even infinite. We might never again have the luxury of a hand clasp, or feel the intimacy of a warm embrace, but the camaraderie of our collective need to remember and record humanity will ensure we touch many others.

 

 

 

 

 

 

 

 

 

 

Four Years as a survivor

I recently saw an ad on Côte-des-Neiges that said:

Derrière chaque grand moment, il y a le travail de plusieurs gens. In other words:

Behind every significant moment is a group of people behind the scenes helping to make it happen.

Yesterday was the fateful June 2nd. Four years since my stem cell transplant, and another opportunity to express my gratitude to my A team: April Shamy, the MUHC, my sister Donna, Keena and Hal. The cash register bells went off when William Ashby Hall agreed to give his stem cells.

Angels

This has been a hard week. I’m weepy, argumentative, inconsistent, and feeling untethered from many of the things that bring me joy. In other words, I’m operating at a lower vibration than is customary. Apart from working on my new novel, I feel I am not contributing to society. My 91-year-old mother is feeling the same way and has taken to writing cheques to every charity that approaches her by mail. Last week I dropped nine envelopes into the red box on Clarke Avenue.

Shower Cap

It’s with a heavy heart that I announce the passing of my shower cap. Born in 1985 in a London factory alongside other precious Liberty items such as scarves and drapes and dresses, today, May 17, 2020, was her last. She was a gift from Betsy Coughlan, a friend who was heading off to London from Fontainbleau, whereas I would reside in Paris. At the time, it seemed an excellent token of our commitment to an enduring friendship.

This was no ordinary disposable plastic head covering like the ones found on the bathroom counters of hotels worldwide. My headdress was made of the most luxurious Liberty cotton imprinted with large pink and blue rose blooms, as expectant as a sea of blushing schoolgirls off to Somerset in their Roman bathing costumes. It was the Rolls Royce of shower caps.

We have traveled extensively: to the steam rooms of Lech, Austria, alongside members of the Jordanian royal family, to Washington, New York, Munich, and Stockholm. You were there mere hours before the opera ball in Vienna.

Like the viciousness of Covid-19 attacking the elderly, a black mould began to spread and consume the plastic liner of my beloved cap. No amount of bleach or Clorox, or hydoxychloroquinine could save her. Considered ancient at thirty-five years of age, she could have been a centenarian if not for the offending man-made waterproof liner. In any event, it was a long marriage, and thank goodness a hasty parting. I was with her until the very end. A private ceremony was held.

 

I forget what day it is

Today is Wednesday, but I’ve begun to lose track. Like other writers, I am no stranger to long hours alone at home. Perhaps a little more comfortable as this is round two for me. Who knew I was practising for a pandemic while undergoing chemotherapy over a 16-month period? Back then, on day three and day four of every week, I was not allowed, use the oven, go outside, apply night cream, shave anything, touch anyone, or put myself in harm’s way while neutropenic—a state of critically low white blood cells.

1918

1869 by Kathleen O’Mara:

And people stayed at home
And read books
And listened
And they rested
And did exercises
And made art and played
And learned new ways of being
And stopped and listened
More deeply
Someone meditated, someone prayed
Someone met their shadow
And people began to think differently
And people healed.
And in the absence of people who
Lived in ignorant ways
Dangerous, meaningless and heartless,
The earth also began to heal
And when the danger ended and
People found themselves
They grieved for the dead
And made new choices
And dreamed of new visions
And created new ways of living
And completely healed the earth
Just as they were healed.

Reprinted during Spanish flu
Pandemic, 1919

30 Days

It’s day 30 of quarantine. I arrived home from London on March 13th to hear Francois Legault urge us to self-isolate if we had recently been to Europe. On the 11th, in Covent Garden, my husband and I had had lunch with my stem cell donor — hours of story telling followed by several goodbye hugs. On the 12th, unbeknownst to us, William was rushed to hospital in an ambulance with breathing issues. On that day in William’s town, one hour north of London, there was no coronavirus test administered, and he and his husband, Michael, were sent home. The UK, due to Boris Johnson’s early dismissal of the contagion, was complacent. Such irony. It was business as usual in the shops and restaurants. Oddly neither William nor Michael could smell or taste, but that side effect had yet to be added to the Covid-19 symptom list.

VIRUS

What, exactly, is a virus? About one-thousandth the size of a bacterium, a virus cannot survive or reproduce on its own. To live, it must enter, attach to and parasitize a living cell. Viruses like SARS, and COVID-19 have been doing this for thousands of years – entering living bodies and dying when the host body either kills them with its immune system, or when the body dies itself. This happens because the immune system’s battle with viruses also kills normal cells, and if too much of that happens, the host body can perish, taking the virus with it. In this fight to the death, both sides can lose. It’s why the elderly and people with underlying medical conditions have a higher mortality rate.

Our politicians should have been better prepared. A global pandemic of this scale was inevitable. It’s been screamed from the rooftops. In recent years, hundreds of health experts have written books, white papers, and op-eds warning of the possibility, and the calamitous effects. Bill Gates has been telling anyone who would listen that we are unprepared.

To contain such a pathogen as COV-19, nations must develop a test and use it to identify infected people, isolate them, and trace those they’ve had contact with. That is what was done in South Korea, Singapore, and Hong Kong. Their containment is a reality. It is what the United States did not.

As the cases spiral, cooperation has given way to competition; some worried hospitals have bought out large quantities of supplies, in the way that panicked consumers have bought out toilet paper. The idea of sharing is lost when heads of state are spooked.

The testing disaster was the original sin of America’s pandemic failure, the single biggest error that undermined every other countermeasure. If the US could have accurately tracked the spread of the virus, hospitals could have executed their pandemic plans, protecting themselves by allocating treatment rooms, ordering extra supplies, tagging in personnel, or assigning specific facilities to deal with COVID-19 cases. That did not happen. In addition, the CDC’s first test was ineffective which meant an entire month was lost. An entire month when planes were flying to and fro, carrying passengers who became carriers and spreaders. Instead, a health-care system that already runs close to full capacity, and that was already challenged by a severe flu season, was suddenly faced with a virus that had been left to spread, untracked, through communities around the country.

The 3M crisis will be a defining moment in Trump’s campaign. His idea of “when there is a lot take a little, and when there’s a little take it all” will come back to haunt him. 3M uses materials from Canadian manufactures. Say nothing of the Windsor nurses who cross the border every day to work in nearby American hospitals.

More to come…

Miguel

My dear Miguel, I have thought of you every day since the virus began to wrap its arms around the people of Spain. I like to think that Italy and Spain have been hit the hardest because their people are the most loving. It's a virus that spreads through human contact. How ironic that holding hands and hugging another person is making people so sick. Perhaps we are meant to look inside ourselves right now, alone, and seek a better version. Instead of a pandemic it’s a transformation.

Love from Susan

Let us be excellent with each other

Today I’m writing about an unfolding situation that will either be a warning or a future truth foretold.

The operator of a coronavirus-stricken cruise liner is devastated that more people could die at sea unless its two ships, the Zaandam and the Rotterdam, are allowed to dock, accusing governments of “turning their backs” on thousands of people stranded at sea during the global pandemic.