Interview: Cystic Fibrosis Ambassador from coast to coast

Sarah Dettmers Interview

Dynamic and full of energy, Sarah Dettmers has always travelled across Quebec and Canada to raise awareness about cystic fibrosis. His involvement, and that of his family, came in a very particular way. Now 27, she who often speaks at events organized by Cystic Fibrosis Canada reminds us that unexpected events can sometimes change the way we look at life.

Sarah, your father's involvement in the cystic fibrosis community dates back to several years before you were born. Can you explain to us why?

In 1984, my father worked at the head office of the Zellers company. That year, the company decided to sponsor and organize a march to fund research against cystic fibrosis. One day, a little girl, accompanied by her parents, came to the head office to make employees aware of the importance of participating in this activity. My father, a man with a big heart, literally fell in love with this young girl and her story. He therefore became a volunteer for the organization of this march and then, quickly, he became one of the main organizers. I was born in 1987 and at the age of 18 months I was discovered to have cystic fibrosis.

What an irony of fate...

Obviously this was terrible news for my family, but also for all the employees at the Zellers head office: little Sarah, the daughter of the person who organized the big fundraiser against cystic fibrosis, was suffering from this terrible disease. It was a real shock wave. From that moment on, the company became even more involved in organizing several other fundraisers. My father gave testimonies during which I accompanied him. He was hugging me, and I was taking the microphone and saying to people “Thank you very much, thank you very much! ”. I had
Standing ovations, I loved that. Zellers flooded me with gifts: toys, walkers, doggies. Of course, this encouraged me to continue my involvement, because in return I had a lot of rewards: the more time passed, the more I wanted to get involved.

Was your involvement limited to activities organized by Zellers?

No You should know that my father being English speaking and my mother French speaking and my mother French speaking, I am perfectly bilingual. Cystic Fibrosis Canada (FKC) then approached me, as I was the preferred candidate to give speeches at all of their events. So I did several activities, but my most memorable moment was meeting Celine Dion. During the last show of her tour in 1993, I had the privilege of co-hosting the evening with Sonia Benezra. I think it was from that moment that I became, in a way, the darling of FKC!

You had become a true ambassador in the field of cystic fibrosis. How did you experience that?

Around the age of 12, my parents asked me if I was comfortable with everything I was going through. Obviously, they were the ones who got me involved and, by their own admission, it was good for them to see me participate in all these activities. But they wanted to know if I was happy with it all. For my part, the question was not even raised. I have always loved being on stage and speaking in front of an audience, behind a microphone. Moreover, I later studied theater. My various implications have certainly guided my career choice. Studying in the field of theater at CEGEP and at university was a real passion for me.

How did your studies go? Did cystic fibrosis limit you?

Before I was 20, life had saved me from all the inconveniences that many other sufferers may experience. I didn't know that about hospitalizations. Besides, I am an eternal optimist: there is always someone who is in a worse situation than mine! One day, reality caught up with me and my condition deteriorated dramatically. I lost a good part of my FEV1, the situation was catastrophic. Pneumonia and infections followed one another. The doctors were afraid for me and I, more than anything, was afraid to die. The situation has gradually improved. I then became aware of my overall condition and started to really understand what it was like to live with cystic fibrosis.

From then on, it became obvious that I could never work in theatre, which had become too demanding for my condition. At 24, I had to sit down and review how I was doing
now living my life. For a year, I worked a variety of jobs, from waitress in a restaurant to cashier at Tim Hortons. I no longer knew where I was going to go: it was my midlife crisis, but at 24!

One day, by chance, I got back in touch with a friend from my youth. She and I shared the same passion for travel, and she made it a career. It was the trigger: I had finally found my “vocation”! A month later, I enrolled in an intensive course to become a travel consultant and graduated within a few months. It was the ideal situation as I could now work at my own pace from home.

Questioning happens to many people during such situations. How did you experience these events?

I understood that the disease should no longer be in denial. Too often, even when things were not going well, I told those around me that I was fine. Perhaps out of a desire to overprotect myself, not to worry my parents, but I was not honest with them and with myself. Our disease is one that is not very visible physically. Sometimes you feel bad, but no one can see it. I like to compare the different aspects of cystic fibrosis to an iceberg: people only see 10% of the situation, not our whole condition! Despite everything, I continued to give testimonies and meet people to make them aware of the disease. It was good for me to talk about it.

Inevitably, when our health condition deteriorates, we think of a transplant. Does that scare you?

Not at all! Beyond any fears I may have, under no circumstances will I refuse the transplant if I have to go there. My desire to live is stronger than any fear imaginable. On the other hand, I am afraid of the impact of this intervention on the people I love. The day when I have to tell my parents that the waiting list has come, it will be like a stab wound for me because they will finally be confronted with my real state of health.

However, I have not yet thought about what my life would be like after the lung transplant. I am not yet mentally ready, because the illness does not yet limit me much.

Does your involvement have an impact on your daily life?

In a way, I love talking about the disease and explaining it to people. Like everyone else, during a fit of cough, I have often been told that “the flu is strong this year”! But instead of ignoring these comments or leaving, I prefer to talk to these people and let them understand what the disease is. Too many people are unaware of this, and if we want to advance the defense of our rights and interests, we need to make people aware of our condition. You never know what impact such awareness can have on individuals. One day, maybe one of these people will be asked to contribute to a fundraiser to help us. She will then think of me, that girl who was coughing up her lungs on the bus and she will donate! Every small gesture makes a big difference.

“I like to compare the different aspects of cystic fibrosis to an iceberg: people only see 10% of the situation, not our whole condition! ”

Has cystic fibrosis affected the way you look at life?

There is a sword of Damocles that is always there, which has a big impact on the appreciation of the little things in life, of course. Often, there are activities that I am passionate about, but that are not necessarily of interest to other people my age and in good health. I have an urgent need to live, I want to enjoy everything now! We sometimes act beyond our abilities and our means for fear of not having the time to experience everything we would like. Until my 20s, I used to talk a bit through my hat when I thought about these little things in life. I said I thought that way, but probably because that's how my parents thought. They taught me this urgency to live alongside me.

From the age of 20, I started losing friends to cystic fibrosis, friends who were closer and closer to me. I wouldn't say it changed the way I looked at life, but it did make everything happen, it made things real. I no longer live in the moment because I have learned to live that way, but because I understand its real meaning.

I can't imagine my life without getting involved in the fight against cystic fibrosis. Whether through field work or at conferences, I feel a deep need to get involved. As long as I can do it, I will! And then, in recent years, I have realized that both my discourse and my type of involvement are going to change. Before, I was very much focused on raising money for research, because more money for research meant that we would find a cure for the disease more quickly, or at least to have a better quality of life. When I was young, I told myself that we did not need help, but a remedy! But for some time now, I have been facing adult problems that I have to deal with myself. What is under the tip of the iceberg, now I am experiencing. This is why I have a great desire to be more actively involved in Living with Cystic Fibrosis and because I feel the need to help others more concretely. Of course, we must not give up on the pursuit of research, but there is also a life as an adult who experiences the consequences of his condition every day. My main focus was profit and money. Now I like to know that there are people in this organization who can help me when I need help. Living with cystic fibrosis is there if I have questions. Too often, we don't understand the purpose of something until we need it!

Interviewed by RRichard LeBoeuf-McGregor

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