All about Cystic Fibrosis

If the disease could teach me something…

I was six months old when I was diagnosed. In the beginning of the Eighties, the prognosis wasn’t encouraging for affected children’s future. Despite this, my parents decided to thumb their noses at reality.

Thus, they will did everything in their capacity to have a healthy Cystic Fibrosis child.

The illness is part of me without nevertheless defining me. Basically, I remain, in the eyes of my parents, a child like anyone with an array of possibilities, skills to develop and, mostly, a future to build. Without experiencing hate towards life or illness, I still feel an important inferiority complex towards people with full health. This impression pushes me further to prove to myself and to others that even with a handicap I am a respectable person with something to bring to society. Coming from a family where performance and self-realization are valued and encouraged, the apple didn’t fall far from the tree. I am driven by the same fuel. I love living in the action. Living day to day is not for me. Projects, challenges and results nourish me.

Even with the illness, everything remains possible, by design a plan A, B and sometimes C. I succeeded in getting a scholarship in a great Paris university, in travelling to remote areas by passing through Russia, Uruguay, Greenland and the Galapagos Islands, to name a few, in walking the 170 kilometers with steep grades around the Mont Blanc (one of my great prides), to backpack throughout Europe alone, to have a boyfriend and a great group of friends. No doubt, life is good for me. For a long time, I took my health for granted and believed I could control the illness. Statistics were for others. For my part, I would crush them!

Around the age of 21 when I was finishing the last year of my bachelor’s degree in economy in the Coop program at Concordia University, things switched for the first time. In the past, I had experienced hospitalization, but never such a quick and important decompensation

While I was succeeding in juggling my studies, my work and my couple, things took an unexpected turn. In a few weeks, my pulmonary functions went from 113% to 37%. Literally, I was seeing stars. I counted my steps when moving. Diagnosis: Overwork. Obviously, a long hospitalization followed. Fortunately, my functions rose to 94% and I could get back a normal life.

Without knowing it, the illness had woken up and I was seated in its roller coaster. With my bachelor’s degree completed, I undertook my master’s degree in economics which I finished by collecting all nighters and infections. While always pursuing performance, I had learned nothing. Before even submitting my final master’s report, a state-owned company, where I had made many internships during my studies, offered me a job in my field. I was more than happy to be offered such an opportunity. My work was fulfilling, and gave me a status and a comfortable financial situation. With work, daily routine is strictly set. Between treatments, the clapping which I had to take over, exercise, work and traffic, I had very little time left. Most weekends were spent sleeping to regain strength and to dream about my next trips.

Even with a strict lifestyle and by carefully following the treatments, the illness continues its course and takes about 10% of my respiratory function per year. With hindsight, the most judicious choice would have been to reduce my workload. Back then, that wasn’t an option for me. If healthy people were able to work full time, then so was I.

Even though I cough, spit and threw up every morning, I went to the office. I probably pushed too far the meaning of the Henri Salvador lyrics saying that work is health. Maybe, but at what price? I then had my first pneumothorax requiring pleural talcage. Before leaving the hospital, the surgeon told me something that shook me « Annie, I cannot say if it will be in two, five or ten years, but someday you will be a good candidate for a transplant. Don’t forget to come and see me before it’s too late ». I receive this advice as a slap in the face. I am not ready to make that an option. In my eyes, my difficulties are temporary. My lungs will recover. It cannot be otherwise. Things calm down for a while. I have the impression of taking back control.

Calm before the storm.

In the beginning of 2009, I was in a nose dive. I like to think that the beauty of Prague Christmas trees took my breath away. Flying home, I knew this was to be my last trip for a long time. My body wasn’t following anymore and my lungs even less so. I went to the hospital emergency to treat a pneumonia. At the admission, my first call was to my boss saying that I had to miss two weeks for treatment. I made it a priority to return to work quickly.

After three weeks of treatment, my functions didn’t recover higher than a lowly 31%. Even though I had seen it coming for a few days, reality was hitting me hard. At that rate of declining functions, I had to ask myself if I could hold up for to years for that call. Pushed against the wall, I had no other choice but to reassess my priorities. Should I again privilege work over my health? I loved life too much to not give myself a chance. I had to follow the advice of my doctors.

Like that, I found myself on work stoppage. For a moment, I had the impression that the sky had fallen on me. I lost my reference points, my status, but mostly, my identity. Outside of work and travel, who was I? What defined and fuelled me? I didn’t have an idea. Even with my name on the donor’s list, I still had hope that the wind would turn and that I could push back the surgery by a few more years.

Meanwhile, it is out of the question for me that I waste my days watching television on my couch and envying everyone around me that was healthy. As I was forced to take a break, I would use that time efficiently by discovering what I really wanted from life. Mulling over my shortcomings was too heavy for me. I wanted to focus on what was possible. Changing drastically from action to contemplation mode wasn’t always obvious or natural for me. With my oxygen tank, I started yoga and pilates with senior groups. I felt the benefits physically as well as mentally. To spend my time, my sweet tooth brought me to take pastry classes. My desserts looked great to the eye, but didn’t taste as good. I love painting, Russian language and photography. The interest is there, but my inner flame wasn’t burning. On a beautiful summer morning, the postman left an ad in the mailbox for evening classes at École nationale de l’humour (National Comedy School). I took it as a sign. On top of learning the basics of a good joke, evenings spend at school make me escape from daily life. Laughter becomes my therapy. Like a revelation, I found out I have a certain talent for storytelling and a particular interest for writing. It is in that way that I was tempted to write a first novel. Behind my keyboard, I feel good as I hadn’t in a log while. On top of entertaining me, writing feeds my need for appreciation and can be practiced during the endless aerosol and intravenous treatments.

At the moment of writing these lines, I have been freshly transplanted for a few weeks. The wait will have lasted a little over 6 years, 3 during which I was continuous intravenous antibiotherapy. With repeated superinfections, I had a major pneumothorax which almost compromised the transplant and hemoptysis requiring embolization. Although the wait brought its share of uncertainty, difficulty and moments of great anxiety, it was also a nice period of recovery to normal. Having used this time to write and publish six novels of which I enjoyed every creation moment, I redefined my priorities, cleaned up my entourage and spent quality time with the people I love the most for the simplicity of who I am and not for what I had to bring them.

If there are two things I wish now is the stay healthy to spend the most time with my loved ones and to not fall again into the spiral of performance at all cost.

Sometimes, humans have a short memory!

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