Testimonial: White hair and the relativity of time

Once upon a time...

I always wanted to start a text this way, probably because I always saw myself as a character rather than a person. So once upon a time there was a woman who had two children. The second, a boy, was born under strange circumstances, in front of an audience of about twenty students in the hospital. Strangely enough, he did not cry when he came into the world. According to an old adage, “Babies who don't cry when they come into the world know that they will have a very difficult life”.

Time passed and the boy suffered from a mysterious ailment: excruciating stomachaches and extreme thinness. The doctors saw nothing wrong. The future looked bleak. Fortunately, her mother persisted. It was at Sainte-Justine Hospital that the diagnosis was made after a second sweat test: cystic fibrosis.

Now let's get out of the legend. My preschool life was punctuated by pills, Ensure®, therapies, hospital visits, and an overprotective sister. Medications weren't soft in 1986. Stomach aches, lung infections, and sinus surgeries punctuated my childhood. Luckily, my sister looked after me everywhere, all the time.

With us, there has never been a taboo around my condition. Everyone knew that. Each year my first oral presentation focused on cystic fibrosis. The disease is demanding, but so are the secrets. Carrying both would have been too heavy.

In high school, the outlook changed. I was no longer seen as just sick, but as a resilient person. Life, however, had its price: fatigue and anxiety. The anxiety of time that flies by too quickly. To die before white hair. To not be chosen for who I am.

A friend once told me that cystic fibrosis was a powerful relationship filter. When someone chooses to stay, the commitment is huge. He was right. Shortly after, I had a romantic relationship lasting four years, which ended for very ordinary reasons.

I graduated from college after five years. I improvised, I performed despite the illness, inspired my teammates, sometimes beyond my limits. Twenty-two years after my diagnosis, I understood that this deficient gene had enriched my life and that of those around me.

Guilt has come of age. Guilt for worrying others. Guilt for being less sick than others. Today, this guilt is an embers that I watch closely. Never shame, however.

Then came Amélie, the one who would become my wife. She chose me with full knowledge of the facts. With her came love, a serious car accident, months in hospital, and then reconstruction. She held on. Seeing those you love suffer is sometimes more difficult than suffering yourself.

We have built a life together. Studies, a house, projects, difficult fertility attempts. Again, anxiety arose, but love held on. Amélie taught me that her choices were hers, and that loving me was one of them.

Today, almost thirty years old, married, an atypical career, a thousand projects and, yes... a few white hairs.
My life has been full of pain and laughter, sometimes in the hospital corridors. I have an exceptional family, precious friends, and an amazing wife.

I end with this proverb that summarizes my relationship with cystic fibrosis:
“To conquer without danger, one triumphs without glory.”

Testimonial by Marc-André Côté
Terrebonne

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