Testimonies: 30 years living with cystic fibrosis and chasing my dreams!

Charlène Blais — Magog (Quebec) Canada

I was diagnosed at the age of 13, but I have actually been living with the disease for 30 years. When I was young, I had intense stomachaches all the time. Each winter, one, two, or three colds developed into “pneumonia.” My mother, discouraged from getting knocked back in the emergency room for a simple stomachache or a cold, turned to alternative medicine to treat me. Honestly, it was perfect that way; my ailments eventually disappeared and that allowed me to live a “normal” childhood, without overprotection and the millions of treatments to do. I got my diagnosis because my mother was tired of hearing me cry that my feet hurt! So we went to see a pediatrician to understand my foot pain. Near the end of the encounter, after looking at my nails, she asked my mom and me if sometimes I coughed for nothing. My mom and I answered “no” without hesitation. The pediatrician then told me: “Charlène, you coughed at least three, four times in 30 minutes.” We were so used to hearing me (and I coughing) that we didn't even realize it when I coughed. This finding, and the fact that I had a cousin who died of CF, was enough for him to send me for the famous sweat test. The result: well, we all know it, otherwise I wouldn't tell you about myself in this great review! But I would like to add that they also discovered that I had flat feet!

How did I take this news at the dawn of adolescence?

I was convinced that we had simply made the wrong diagnosis. I was fine, I was nothing like all these photos of children that were shown to us in the various leaflets explaining what CF was. Despite the denial of the disease,
I was really happy to start taking digestive enzymes. I put on 40 pounds in one year! I went from being a little girl to being a real teenager. And as a bonus, my stomach almost didn't hurt anymore! Plus, I had no trouble integrating my spray treatments. (I've always been the type of kid to do what they're told to do: you brush your teeth up and down, you don't get in a stranger's car, etc. In short, if someone tells me to breathe in medicine, I do it!)

I would say that it was around the age of 20 that I accepted that I had CF. The post of regional representative for the CPAFK board of directors was vacant following the elections. I like to get involved in everything and a vacancy appeals to me! Before going to the first meeting, I had never spoken to anyone else with CF in person (my cousin died when I was 4 and the hospital avoided exposing us to other CF because of cross-contamination issues). Thanks to the members of the board of directors, I discovered a lot of people who are alive and well, at various stages of the disease, but no one on an artificial ventilator as I imagined. My involvement had several beneficial effects: I became familiar with the disease and, thanks to all the meetings I had at the CPAFK, I finally accepted that I was a person living with cystic fibrosis.

Yes, but: how am I doing now?

For a long time I felt bad saying that I was fine. So many friends and acquaintances with CF are not doing well; why do I still have good lung function? At 30, I don't have the answer to this question yet, but I've come to terms with the fact that we all have a different journey with the disease.

“I don't know if I'm a positive person or a lucky person in life. On the other hand, I know that I have lots of dreams, and I am lucky to be able to say that I have fulfilled some of them.”

I am now proud to say that my FEV1 is around 105% and that I have never been hospitalized before. I tell myself that it gives hope that it is possible to live well with CF, even when you have the ∆F508 double mutation. On the other hand, I still feel that I owe a small debt to those who are less well. For you, I have now been involved with CPAFK for 10 years: I defend the rights and interests of people living with CF who do not necessarily have the energy to get involved, and I ensure that the great mission of this organization continues.

And the dream in all this story?

I don't know if I am a positive person or a lucky person in life. On the other hand, I know that I have lots of dreams, and I am lucky to be able to say that I have fulfilled some of them. My modus operandi is as follows: I set a dream and only one goal at a time, and I devote a lot of energy to it. When I was young, I dreamed of owning a horse. I found a job in a stable near my home (at the age of 12 I was already working). I cut out all the classified ads for horses for sale in the newspaper. I harassed my parents for one, but they didn't have enough money to buy me such a beast. I'll let you guess what I chose, after my diagnosis, as a child's dream! This casserole is still alive; she is also 30 years old this year!

In high school, I chose my career based on the goal I had set for myself: to have my autonomy, my own adult life, and quickly. (I was told that the median age is 34, so I had 15 to live a normal human life!) So, I asked myself this question: what would allow me to make money, but would not force me to spend 10 years in school? My answer was a civil engineering technique: three years of CEGEP for a comfortable salary upon leaving. I graduated at 19, I bought my house at 21; the autonomy I had dreamed of so much!

As a real girl, I also dreamed of meeting the man of my life. Love is like health, no matter how much you hope, you don't have much power over it... But again, I was lucky. I married at 24, to a wonderful man, who accepts me as I am and supports me
on a daily basis.

At 27 years old: professional exhaustion.

I couldn't get enough of civil engineering: a career you choose for money can't make you happy for very long. In addition to the tense situations I was experiencing at work, my husband and I decided to expand the house. We devoted all our free time to it. We did the expansion because we wanted to start a family. And to add even more stress to all that, since I couldn't get pregnant, we tried the fertility clinic: five artificial inseminations with hormones. In short, I was there: failure at work, stress at home, and still no baby. I couldn't take it anymore. Of everything. A long journey and a lot of reflections led me to tell myself that my happiness would be found in agriculture. I decided to let go of everything, the work and the baby factory. And I went back to school.

I finished my second studies last May: a technique in managing and operating an agricultural business. My training allowed me to realize another dream that I had cherished for a long time. I participated in the Chapeau les filles competition, which is aimed at girls who study in traditionally male professions. I won an international internship in agriculture, in the country of my choice. I always wanted to see the beaches of French Polynesia, so this is the place I chose to do my internship: I spent a month in paradise in 2013!

And what about the dreams I'm chasing now?

I want to start my greenhouse business; growing vegetables is my passion!

This winter, we are starting to test babies again, but using in vitro fertilization. We'll see...

I don't have the exact definition of happiness: chasing your dreams or living in the moment? For my part, I try to combine the two!

I chose to talk to you about the positive aspects that CF has brought me (determination, joy in life, eagerness to enjoy life). I could have told you about the negative aspects of the disease (the depression, the treatments, the millions of lousy mornings of waking up, the rage of the disease), but I know you already know them. Know that these aspects are also present in me, and that I fight every day to accept them or, at the very least, to learn to live in their company.

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