Our home

Lately, I’ve been wondering about the concept of home. The place we designate as the one that will house many of our emotions, our desires, our dreams. A place that resembles us and which sometimes shares the reflections of our family, our partner.

I moved like many of my fellow citizens on July 1, 2022. Between the incessant sound of Scotch tape on boxes and the latent anxiety of discovering a new neighborhood, I was far from suspecting that a completely different change would occur, much more important than the uprooting of my beloved Mile-End, only 2 months later.

Those who are regular readers of my writings for Bota Bota will know that I like to break the 4th wall from time to time and talk about my life but especially about my health. Well-being is part Bota Bota’s DNA, and since I have been working there I have been putting more and more emphasis on this word in my life.

I’ve suffered from cystic fibrosis, chronic degenerative lung disease my whole life and since my birth, my health and everything that encompasses it have always been a priority. I no longer count the treatments and medications that I ingest daily, as I do so in an almost mechanical way. It’s a routine like any other.

Last August, I was introduced to a revolutionary new medication in the world of cystic fibrosis. It is said today that this drug is the closest thing to a cure. In the space of two months, I saw my body change, my breathing improve drastically, giving me today the ability to breathe like an almost so-called “normal” person. A dream that I didn’t dare dream even a year ago, as it seemed impossible.

The first weeks of treatment were a phase of my life that I will never forget, it was so euphoric. Because the results were significant in a very short period, I saw myself grow wings and have a spectacular energy boost. I wrote in my personal notes:

“It’s as if I’ve had momentum all my life and today the invisible rubber band that’s held me down since birth has finally let go, propelling me above the trees, clouds and stars. For me, who has always been afraid of space, I envision this new horizon with envy and passion.”

The euphoria then gave way to a kind of anxious cloak I wrapped myself with; the life I had created around this chronic disease was melting away and I found myself facing a stranger with whom I oddly shared the same face. Unusual feelings surfaced, such as being homesick. A feeling I hadn’t felt since my teenage years.

I have long sought to understand the reason behind this emotion. Was it my recent move that gave me this effect? Or maybe my summer trip to France to visit my family? What place was I missing? Why suddenly this feeling so strong? And what house was I in need of?

And suddenly, the answer seemed obvious to me. Our body is the first envelope, the first place we inhabit before we even see the light of day. It houses many of our emotions, our desires, our dreams, it is the first imprint of our being.

While for some the reasoning was clear, I had never fundamentally made the link between my identity and my disease. I was convinced that the two lived without really being aware of each other. They coexisted placidly, greeting each other from time to time, when I was hospitalized or in moments of significant illness. I knew that a part of me was what it was because of my condition, but I had never really considered the impact of it on my identity.

This new drug, although revolutionary, has stripped me of everything I know. My body, although sick and in lung failure, was my home, the place in which I was most comfortable. Today, I wake up in a new body that I no longer recognize, which reacts differently and expresses itself with more physical ease. The feeling of being homesick therefore came from there, of no longer feeling at home in my own body.

I realize today that I must rebuild myself with new markers, to understand how to exist when a part of me has changed so drastically. It is a daily mourning, which is expressed in waves; I am joy, and I am sadness. My tears, sometimes bitter, cancel the progress I am making, that of moving forward despite the chaos of a life in constant questioning. But their salt sometimes reminds me of the sea, which I sometimes dive into in my head to feel better. I tell myself the warmth of life is worth living, that it is made up of currents and that everything comes and goes. I try to see this new chapter as a new house on the exact location of the first: the foundations are the same, the walls have simply changed their colour.

Photo: Youssef Naddam