From our bodies to your heart
heart
A project by Céline Huyghebaert
With the words and participation of Michel Bouchard
Claude Côté
Marie-Reine Kernec’h-Mauve
Marie-Michèle Mantha Dorothée Njuidje Jean-Pierre Paquet Nathalie Prémont Anka Alexandrov Todorov
A project produced by centre Turbine
In collaboration with Fondation Virage
The CHUM - Centre hospitalier de l’Université de Montréal
From our bodies to your heart
From our bodies to your heart was created as a result of meetings between artist Céline Huyghebaert and people diagnosed with cancer. From February to August 2020, with the support of the centre Turbine and the Fondation Virage, she offered a malleable space, where participants were invited to name their own experience of the sickness based on what is invisible. Through writing, but also through gestures, conversations or photographs taken with disposable cameras, their stories were told.
This publication is first and foremost their own. Their voices united, tightly woven together creates a collective abecedary in French. This book is to be easily passed from one hand to another or sent like a letter. The words it holds shatter the silence and existing narratives on cancer, be they medical or journalistic, coming from ourselves or from others.
This publication concludes the project Effets secondaires, proposed by Céline Huyghebaert, consisting of creative workshops and a research and writing residency. The project was produced by the centre Turbine, a pedagogical creation center that provides spaces for experimentation that combine current practices in art and education. It benefited from the collaboration of the Fondation Virage, which offers support services and writing workshops to people diagnosed with cancer.
Céline would like to express her heartfelt gratitude to the participants for their commitment to this project, for their trust, for their contributions, and for the joy and emotion with which they filled the workshops. Thank you to Lise Pettigrew, Claude Côté and the Fondation Virage team for their generous welcome. Thank you to Yves Amyot who welcomed and accompanied this project with enthusiasm and allowed it to evolve. Thank you to the entire team at Turbine.
Many thanks to Julie Delporte, Sophie Jodoin, Evelyne Leblanc-Roberge, Mélissa Longpré, Claire Moeder and Pierre-Louis Malfatto for their kind attention and advice.
To Pierre Sourdif, on behalf of all the participants.
The centre Turbine and Céline Huyghebaert would like to thank the Conseil des arts et des lettres du Québec for the financial support.
From our bodies to your heart
First, there is the pause, the wait, a sensation I believed harmless turned out to be quite different a tiny, hard lump on my left nipple.
It can be almost charming judging by some of the images found on the Internet but oh so dangerous.
The letter C : I am no longer afraid of the word.
Then comes the diagnosis.
The decision
My doctor asked me if I had any questions, but they only came to mind after I had left the office and closed the door.
At the time, I blamed my doctor, as if it was their fault if my life was about to change at once.
I was less afraid of death as I was of the treatment.
From our bodies to your heart
They weren’t talking to a person. They were talking to a Stage 3 or Stage 4 cancer.
The staff was kind and caring, but I couldn’t get the information I wanted about my illness and the treatments.
I remember the violent emotions that came through me when I had so little time to chose. The problem is : Do we really have a choice?
The exams
After the scintigraphy, I imagined myself as a shooting star twinkling in the hospital halls.
The first time, I was asked to leave the building through a side hallway because my radioactivity could interfere with the devices hooked up to patients. I felt strangely connected to the nuclear stations: powerful, out of control, dangerous in spite of myself. I didn’t burn anyone on my way out and left the hospital hoping that the octopus nesting inside me had revealed all its tentacles to the daunting machine that had danced around it.
The future
I would like to live to be 100 years old To travel, to enjoy life freely and without restrictions! To write a play and star in it TO BE HAPPY
To hear the words: You are completely cured.
The unseen the pain my anger the exhaustion the weakness in the legs the loss of libido the boredom the amputation my anxiety the healing my hopes my new limitations the fear the lack of sleep
my fear of ending up alone the financial struggle my strength the scars under my clothes the infertility my loneliness my despair my silence my compromises my resilience my guilt the tumor the unspeakable weariness
From our bodies to your heart
liens ombre
The bonds : He has taken a piece of my cancer.
maintenant nausée
This moment, this home, the longing, the thought of death, the meditation
The nausea You knew that chemo involved risks.
At least you’re alive, enjoy life! Hair grows back.
It’s not a big deal, get over it. We’re all gonna die someday.
You are strong. You will fight the cancer. You will win the battle, you’re tough!
but it is not a battle.
The shadow : I’m afraid people will forget about the person I was before.
From our bodies to your heart
The loss
[They prepare you for hair loss, but not for any other loss.] a certain innocence my sexuality my hair my energy, I am constantly tired one hip the right upper lobe of my lung my optimism a normal lifestyle a part of me that I will never get back not the cancer, that’s for sure cramps, finally! work! my career the fear the tumor, until now my illusions
I had just lost my sister. I had to put my grief aside to take care of myself.
The fears
One thing that haunts me: the fear of having to go back to work before I’m ready. I’m already thinking about it while I’m still in treatment.
quête rémission silence
From our bodies to your heart
I attended a workshop where we were asked what we feared the most. Everyone said the same thing : the possibility of relapse.
The quest Sometimes, a light shines through it all. I found this light.
The remission
The silence, that falls upon them when I say I have cancer. The silence, that fills the empty moments when no word could ever describe what we are feeling.
The care yoga, breathing singing in the shower writing dancing to lighten up anything that breaks the feeling of isolation my dog’s head resting on my lap nothing
acupuncture and Chinese medicine the support groups who answer our questions a smile laughter yoga walking
knitting napping with my cats the gestures of friendship drawing and painting the moments of abandonment
The treatments
My doctor admits that he could have gone a little easier on the treatments.
The vocabulary
You have to learn a new vocabulary when you have cancer. You have to understand the difference between chemotherapy and radiation therapy, you have to learn to say doxorubicin and docetaxel, capecitabine, cisplatin, cyclophosphamide, epirubicin, gemcitabine, paclitaxel, pertuzumab, trastuzumab, Zoladex. You have to speak the language of the doctors.
Sometimes, we wish they would also listen to our languages, the one that screams on the surface of our skins, the one that trembles when the sadness and pain is too strong, the one that scrapes our throat when we are afraid to die, the one that fills the heavy moments when there are no more words left. But doctors have not learned these languages.
heart
A the absence the alopecia the amputation the announcements the anxiety the arrogance aging B the bed the biopsy the bonds the boredom the breast C the cancer the carcinoma the care the chemo the choc the church the control the cough chronic D the decisions the denial the depression the diagnostic the disability the discharge the dreams dancing drawing
death dying E the exams the exhaustion eating F the family the fatality the fears the flowers the food the frailness the friendships the freedom the future fasting G the gangrene the generosity the genetics the grief the guilt God H the healing the hope the hole the home the honesty the hormones the horror the hospital
From our bodies to your heart
the humility the humidity the hunger the hyperreactivity I the incomprehension the indifference the inertia the infections the infertility the injustice the insomnia the invisible J the joy the journey the judgements K the kids the kindness karma kombucha knitting L the leukocytes the light the loneliness the loss the lump the lung laughing life
M the madness the manipulations the mastectomy the meditation N the naivety the narrative the nausea the need new now O the oncologist the operations the optimism opioids P the pancreas the pain the power the prayer the present Q the questions the quest Qigong R the radiotherapy the rays the reconstruction the remission
From our
the responsibility the rest the restrictions the risks
S the sadness the safeness the sarcophagus the sentence the shadow the silence the soup the support the stage the stress the sun the surgery the survival shingles single breast
T the taboos the tears the teeth the terror the treatments the truth the tunnel time U the ultimatum the unknown the unspeakable the unutterable
bodies
to
your heart
the urgency the use V the veins the violence the visualisation the vocabulary the void the vulnerability W the wait the waves the weight the weariness the windows the wreck warning writing X xeres xanax xenon Y yoga laughter yoga Z zen
The journey
I put away my suitcase but I never unpacked.
“If a colour cannot cure, can it at least incite hope?” – Maggie Nelson, Bluets
What you wish to tell them : Thank you for being in my life!
Artistic direction of the publication Céline Huyghebaert
Graphic design
Audrey Beaulé/Studio Gabarit
Editing (texts in French) Marie Saur
Translation Maureen Roberge Printing Publication printed in risography by L’abricot in Montreal in May 2022.
Publisher centre Turbine
«Over the years, I have amassed countless blue stones, blue shards of glass, blue marbles, [...] pieces of blue rubble from broken buildings, and though I can’t remember where most of them came from, I love them nonetheless.»
– Maggie Nelson, Bluets