All about Cystic Fibrosis

My way

By Marie-Ève Beaulieu
Napierville, Quebec
SVB 2013

 

For a long time, I thought my story was different from everyone else’s. I have to admit I was prejudiced against people, like myself, who had cystic fibrosis. In hindsight, and especially because of some very unexpected events that occurred in my life, I now realize that it was my ignorance and my isolation that were the main sources of this prejudice. It took me a long time before I would share my perspective on living with this illness, probably out of fear that I would be judged. My recent hospitalizations and the various social network groups proved to be a revelation for me. I discovered that I was not alone in thinking this way. So, in my humble way, I have decided to share my perspective on the various stages of my life with cystic fibrosis.

Discretion: For better or for worse

I’ve always been very discreet when it comes to my health. Obviously, when I was young, the fact that I was systematically hospitalized every six months meant that people around me were aware of my state of health. As a teenager, I spent most of my high-school years in the sports/arts concentration program. We were only a small group of students and we were in a different wing of the school. So, until Grade 10, I always hung out with the same people.

It was in Grade 11 that things changed for me. I decided to quit the program and go into a regular class with students who were total strangers to me. I loved the fact that no one knew about my illness—finally I could be anonymous! It was also at this time that I started lying about my symptoms. When people would comment on my cough, I pretended I had a cold or allergies. This put an end to the questions and I wasn’t labelled as someone different.

Since no one suspected anything, I carried on this way up until my last job. I had graduated from CEGEP with a diploma in administration and had been lucky enough to land an excellent job as a financial adviser in a bank. Naturally, the stress caused by having to achieve work objectives, coupled with the fatigue associated with the construction of my house, meant that I started getting sicker and had to take more and more time off work.

I had the impression that my co-workers, who were unaware that I had cystic fibrosis, were becoming increasingly annoyed with the frequency of and reason for my absences. Since I had become friends with a good number of them, I felt that I owed it to them, out of respect, to tell them the truth. What a relief that was! It was as if an enormous weight had been taken off my shoulders. I could miss work without being judged; in fact, my co-workers even encouraged me to get some rest. Luckily, what I feared the most did not take place: people did not pity me and did not talk about my illness. For me, it was the best of all possible worlds.

Unfortunately I had to stop working suddenly for health reasons; however, I have lasting memories of those good years. I loved my brief career and I was pretty good at it. I also made some close friends with whom I have kept in touch. We still get together even now.

My love life

Deciding to keep your state of health a secret is not without consequences: the difficulty of being part of a couple is a good example. As a teenager, I preferred remaining single rather than having to explain to my friends about my health. I was convinced at the time that no one would want to have a sick girlfriend. Naturally, I was a bit jealous when I saw all the couples forming around me, but I had resigned myself to the fact that it would be easier for me to remain single than to have to share my secret.

However, life decided differently for me. In the summer when I was 17, I began my first real romantic relationship with the man who would become my husband 10 years later. As luck would have it, I had known my boyfriend since childhood, so he already knew that I had cystic fibrosis. My day-to-day life at his side was a long, calm river for many years: my health was rock-solid stable (or at least that’s what I thought at the time), we worked together on shared projects and the future looked bright. We almost never talked about my health. He had a rough idea—he knew I had treatments to do and that I was very self-disciplined. I preferred that he not see me doing my treatments. This was my way of not seeming ill in his eyes.

I truly believed that the illness would never get the better of me, so much so that I even took out an RRSP for my eventual retirement. However, a pneumothorax during a hospital stay in December 2008 turned my plans upside down. I was 26 at the time. Since I had to have an operation, and because my lung capacity had decreased significantly, there was no question that I go back to work in this condition. And then, all of a sudden, doctors started coming into my hospital room to talk to me about a lung transplant. This was the first time anyone had talked to me about it and the first my boyfriend had heard about it.

And so, in a few short days, we had to get used to the idea that this was the next step. I was so shocked by the news in the beginning that I didn’t think about what my boyfriend must have been going through. It was only when I started feeling better that I was overcome by a sense of guilt for the first time. It dawned on me that I had not prepared my husband at all for these ordeals. How could I, an intelligent and down-to-earth woman, have not realized that I had been living under a total illusion with respect to my future? Had people tried to warn me and had I not wanted to hear what they were telling me?

In any event, my life would never be the same, and I was determined that my boyfriend be free to leave if he didn’t want to go through all this hardship with me. Luckily though, before I even had a chance to talk to him about it, his mind was made up. In my hospital room, while I was on oxygen, had a chest drain and was receiving antibiotics intravenously, he proposed to me. Besides giving me a huge boost of energy, this marvelous news made me realize just how important it is to have plans, big or small, regardless of your state of health or your outlook for the future which, unfortunately, may often seem pretty dismal.

We have been married for almost three years now. During this time, we have had to deal with other health issues and I have undergone difficult operations and have had to spend many months in hospital. I also had to put an end to my brief career. Nevertheless, we have come out of all this stronger and more united and we are thankful that life allowed for our paths to cross.

Motherhood: A heart-wrenching choice

One of the greatest losses that I will probably have to face is motherhood. Of course, the choice is up to me. A number of women with cystic fibrosis have decided to give birth despite everything, and I deeply admire them for it.

I vaguely remember a doctor telling me about the risks associated with pregnancy. Knowing how closely I follow my doctors’ recommendations, I imagine this is what led me to renounce the idea of becoming a mother. Since I was quite young when I started my relationship, and given that my boyfriend already had a daughter and had not talked about wanting another child, several years went by without the issue ever coming up.

One day, we decided to leave our native Saguenay and move to the suburbs of Montréal. As a result, I had to change doctors. It was during one of my first appointments that my new respirologists talked to me about motherhood. I probably made up my mind when we discussed the possible deterioration of my health should I decide to have a child. I loved my life the way it was, my health was very stable and I was in love with a man who was happy having only one child. During this brief decision-making process, I considered the fact that everything might go perfectly well, both during the pregnancy and afterwards—this was a possibility. I also thought about the future and the harsh reality of my somewhat reduced life expectancy. I didn’t feel I had the strength to give birth to a child, knowing ahead of time that I would put him or her through a lot and that my child would probably have to deal with death a lot earlier than need be. I also thought about my husband and, above all, I did not want to leave him with the heavy burden of having to bring up a child on his own.

Of course, I sometimes get a bit emotional when I see my brother with his two beautiful children, or when my friends talk to me about the daily joys of bringing up their offspring. However, I quickly take comfort in the arms of the man I love.

Positive thinking: my mantra

Ever since childhood, I have been immersed in meditation, yoga, esotericism and positive reinforcement. My father taught yoga, practised meditation every day, was a runner and travelled hundreds of kilometers every year on his bike. My mother practised numerology and even then, back in the early 1980s, was already interested in the power of positive thinking. So, when the diagnosis of cystic fibrosis was handed down, my parents obviously put their knowledge into practice. With his extraordinary positivity, my father recorded his voice on a cassette repeating, over and over, for hours on end, “Marie-Ève is in perfect health.” From the age of three onward, when my parents would put me on the clapping table in my bedroom and play this cassette, they were, without knowing it, giving me the tools that would allow me to become a happy and fulfilled young woman, despite my illness and the difficulties I face.

While I was in hospital a few years ago, I met a positive and very determined young woman who, unfortunately, lost her battle with the illness. I cherish precious memories of this meeting, because it was she who taught me that no good would come of identifying oneself as a “cystic fibrosis adult” rather than a “person with cystic fibrosis.” I had always fought so that people would not see me as someone who was sick, and yet here I was calling myself a “cystic fibrosis adult.” This may all seem rather insignificant; however, since I believe that the subconscious mind stores a lot of information, I have decided that I will not be defined by my illness. I have passions and interests and I want to be remembered for my personality, not my state of health.

Positivity and love of life definitely allow me to appreciate life’s little day-to-day pleasures and to tell myself that, despite the fact that I have a serious illness, I wouldn’t want to change places with anyone, and that, no matter what happens, I will have lived my life to the fullest without any regrets. I do not presume to think that I have found the magic formula; however, my health has improved immensely over the past few months and it pleases me to think that, in the end, I may have had something to do with it!

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