Odile, different | Press

Fifteen. You are 15 years old. Your lungs don’t do the job anymore. It was planned, written in the sky, programmed. You have cystic fibrosis.

Little by little, the lungs let go. But that’s not all with cystic fibrosis. There is everything else. Difficulty in eating, in digesting. In addition to the difficulty in breathing.

You are 15 years old. Your name is Odile.

And you wait for your lungs.

You can’t order it on Amazon, lungs. It’s from an organ donor bank. It is something like a lottery. Some, Odile, die while waiting for lungs that did not come in time.

You are 15 years old. The bereavements, you put them on. A “normal” life, loves, parties. Dream ? The future ? It’s hard to imagine that, when death is lying in wait for you. School was also a mourning: the living forces ended up leaving you, you will not go to school, at least for a while. You had already been in the enriched program.

A long time ago, at 15, what is it?

Eternity.

You are 15 years old, you miss everything. The loves, the parties. Your friends desert you, inevitably.

Your friends are living their teenage life. You are connected to tubes connected to machines, force-fed, you have increased back and forth to Sainte-Justine. Your friends are disappearing. It is neither their fault nor yours.

You are 15 years old, you have no more friends.

Your name is Odile Lefrançois.

You have two things in life, apart from illness.

Your family: dad, mom, your two little sisters.

And the words. The words you write, then the ones you devour in books. You cling to the words: “Words against my ailments.” ”

You’re 15, you’re in Sainte-Justine, your lungs are really on the verge of failing. There, at this stage, you are in Sainte-Justine full time. You breathe, but the oxygen that you manage to breathe does not manage to supply your organs properly. Your body is dying in slow motion.

You are in a permanent half-sleep. It’s the body that makes you semi-sleep. To preserve you.

Oh, you wanted to die, often. You even chose the way. But you’re 15, Odile, and you’ve clung to life, despite the fatigue, despite the disgust, despite… your body.

And there, in your half-sleep, you hear them, in the half-light of your room. You hear them, your parents and the doctor. The end of the road is approaching. You don’t hear everything, but you understand everything.

There are two options, basically.

One, we’re waiting for the lungs to arrive. We don’t know if they will arrive. You may be waiting until death.

Two, you get hooked up to an ECMO, an intensive care machine that provides “extracorporeal membrane oxygenation”. ECMO is a modern miracle, which sometimes saves patients.

But you, Odile, are different. It’s always different for you. If we plug you into ECMO, your organs will breathe a little, your body will have a break. But connecting to ECMO will exclude you from the only solution that can save you: the transplant.

Can you hear that, Odile. And you who had so often wanted to die, there, you are terrified. There, it is true, it is only dark thoughts. A thousand things go through your mind, in your child’s head. Yes, you’re 15, but 15 is still being a child.

You think about life, Odile, you think about your parents, you know that they are exhausted by your condition, exhausted from having a child who dies in slow motion, without ever dying …

They go out into the hallway, with the pulmonologist. The hallway, to speak freely. Say the things you shouldn’t hear. At that moment, you resign yourself, little Odile, you are ready. You think of the words, again: the words that will be your farewell …

Your parents are coming back. They are bending over your bed. You are amazed: there are no tears in their eyes.

To hell with the ECMO machine. Your parents tell you that the fight continues! We transfer you to an adult hospital. You will already be there if any lungs materialize.

Your first night in this hospital, you spend it crying. The warmth of the Sainte-Justine staff is absent. You miss the colorful ceilings, the Disney smocks and your parents, who can’t spend the night with you, here, in this hospital for adults.

In the morning, your father is there. The surgeon must pass. You have questions for him. He arrives, this doctor, beard of two days, the air emptied. But he has the most beautiful answer, delivered with a huge smile …

Lungs. He has lungs for you.

You will be operated on today.

You cry.

Your father is crying.

At the end of the line, your mother is crying too.

Odile Lefrançois survived. She is 22 years old.

Seven years later, she is there, very tiny, pink and blue hair, sitting on an ottoman at the Salon du livre. She published a book, Different – Marked for life, on his life.

“I have been writing since I was in 4^e year, she told me. It’s a good start, the book. I write about what I have experienced. Isolation, being away from others, my difficulties in growing up like everyone else … ”

Today, Odile is catching up with this life of which she has only been so long in the periphery.

She studied literature at the Cégep de Saint-Laurent. And she gets involved in campus life. The student newspaper, the Procrastin, of which she is the editor-in-chief. The student asso.

Ariane Bureau, student life advisor at CEGEP, contacted me to talk to me about Odile. She told me about the life of this little fighter, adding: “And besides, she wrote a book …”

I met Odile on Friday morning, a stone’s throw from kiosk 125. She was accompanied by Ariane and her friend Lauryanne Barrette, from the student newspaper. Odile had a book signing at noon for her book.

“It was very therapeutic…

– What then, Odile?

– To write. Make this book.

– Why ?

– I’m anxious, I think a lot. Instead of keeping it all in my head, when I write, it’s like I don’t have to think about it anymore. It’s not there. It’s… liberating. ”

Writing, she said, calms the heart, it calms the mind.

I say to myself, noting: you understood everything, child …

I notice a tattoo on Odile’s right forearm.

” What’s this ?

– A lifeline. ”

I understand, after two or three seconds, taking notes:

“Like an electrocardiogram!

– Yes. There are five peaks, Odile told me, sliding her finger over her tattoo. For all my family. My parents, my sisters, me. And it hides my scars.

– Your scars?

– A few years ago, I was really not well… ”

And there, I understand, right away.

Keep writing, little Odile.

Words, yes, you said it right, can overcome many evils.

Different – Marked for life

Odile Lefrançois

The Editions of the Apotheosis

130 pages