All about Cystic Fibrosis

Being someone for somebody

By Lysandre Barrette
Île-Perrot, Quebec
SVB 2013


The big day

It was September 28. Like any other Wednesday, I was working as a legal assistant in my father’s law office. Around 3:00 p.m., I was at my workstation when my father walked towards me and handed me his cell phone, without saying a word. “Hello? I might have some lungs!” It was my little sister, Anne-Sophie Barrette, who has cystic fibrosis, just like me. She was 19 years old at the time and was in Sainte-Justine Hospital. She had been waiting for a lung transplant for nearly a year and a half and had been on the emergency list for the past four months. I had imagined this scenario hundreds of times, anticipating my reaction, but this was finally the real thing. It took me a second to realize that the moment had finally arrived.

The trip to Sainte-Justine Hospital seemed to take forever. By 9:00 p.m., about 15 friends and family members had crowded into Room 6401, where the excitement and nervousness were palpable, anxiously awaiting Dr. Ferraro’s confirmation. The telephone rang and Anne-Sophie answered as we looked on with searching gazes: “Yes . . . Okay . . . Uh-huh . . . Yes . . . Okay.” She calmly placed the phone in the cradle with a faint smile on her face and said, “It’s a go!”

Thus began the countdown to a fabulous adventure that would determine the outcome of a lifelong battle in which strength, resolve and a burning will to live would win out over the suffering, obstacles and limitations due to cystic fibrosis.

The wait

In the ambulance on our way to Notre-Dame Hospital, I couldn’t stop the tears from running down my face. I was flooded with emotions: excitement, fear, relief, worry, joy and anxiousness. As soon as she arrived, my sister was taken to the intensive care unit to wait for the organs to be harvested from the donor. She would then be transferred to an operating room to undergo the major surgical procedure. However, the harvesting was postponed hour after hour, all night long, transforming each minute into an eternity. Tensions were rising with every passing moment. When the sun came up, the signal was finally given. I will always remember her last smile in the elevator before the doors closed; she winked at me and said: “See ya!” Anne‑Sophie was ready and was by far the most serene and peaceful of us all.

That long night of waiting proved to be the most difficult time in my life. I tried to relax by closing my eyes and counting my heartbeats as they resonated in my head. I was recalling the past and everything I had done to take care of my little sister, sometimes even jeopardizing my own health. My mind was flooded with memories of nights spent by her side in the hospital room, keeping her company (certainly not because the mattress was comfortable!), paying attention to her and spending time with her to show her how much she meant to me.

A new beginning

While I was lost in thought, I suddenly realized that this was not the time to worry about whether I had properly played my role as her big sister, nor was it the time to entertain the rueful, guilty thoughts that were quickly surfacing. When I realized that I could have acted differently on many occasions, it was too late. I had to tell myself to accept the past and live in the present and do my best to act the way she would want me to right now. “She needs you,” I told myself. Once the operation was over, Dr. Ferraro informed us that everything had gone well: “I even managed to sew her back up without doing too much damage to her tattoo!” What a moment of pure joy and relief! Words cannot express what I felt at that precise moment because nothing could accurately describe my euphoria. Five days later, with the assistance of the physiotherapist, I helped her walk her first five metres, which was a major effort for her. Witnessing this new beginning was like witnessing a miracle. And now, eight months later, it still surprises me to see her run!

CF and me

Let me take you back in time. I was six years old when I realized that my disease made me different from the other schoolchildren. I was the only one in my first grade class who had to take dozens of pills every day, undergo daily clapping treatments and do half an hour of inhalation therapy morning and night, not to mention make regular visits to Sainte-Justine Hospital and undergo numerous intravenous antibiotic treatments. When I realized this, it was with no small sense of unfairness that I began to wonder: “Why ME?” However, experience has taught me that in order to accept this burden, I had to avoid feeling sorry for myself at all cost. I therefore adopted a different attitude to my disease, which consisted in transforming my feeling of powerlessness into a major positive force, the same one that unites me with my sister. Taking up this challenge one day at a time constantly strengthens our bond and helps us face our inevitable vulnerability.

Together forever

I consider my sister to be my unique partner in our day-to-day battle against this disease. We help each other when times are tough, such as during long hospital stays, and motivate each other to do our treatments, keep up our courage and accept the fact that our health is slipping through our fingers. And it is our special mutual understanding that allows us to express the same exasperation when our parents ask us over and over if we have taken our enzymes. We are always there for each other and our sister souls complete each other.

I admit that seeing my sister’s health continually deteriorate was so emotionally taxing that I would forget the burden of my own illness. Her health was more important than mine. I would do everything I could to make her feel better. If I had had the necessary tools and resources, I might have managed more effectively the torment I suffered because of this situation; however, I had a lot of trouble voicing my worries at that time. They lay buried and ignored, gathering momentum over all those years of silence and driving me to a very deep and lengthy depression. At least this process enabled me to understand a principle that is not always easy to apply, even today; it boils down to the fact that we need to save ourselves before saving others.

Today, following her transplantation, the roles are reversed: Anne-Sophie is looking after me, her big sister. I am reaping what I sowed with her all those years, and I see this role reversal as an expression of gratitude, a form of thanks. This is the best reward I could ever have and it tells me that my mission was accomplished. My sister inspires courage and motivates me to fight hard against this disease in the hope that when my lungs are completely ravaged, there will be another option besides death. I will get a second chance. It’s hard to imagine living with healthy lungs, because that feeling is such a distant memory for me, but I believe that I will one day be free of all this. It will be my turn to begin a new adventure in which I can finally laugh wholeheartedly without choking and breathe deeply the sweet scents of autumn.

Solidarity and mutual support: the key to good spirits

I believe that it is rewarding for people with cystic fibrosis to support each other and develop a sense of solidarity. It is reassuring and comforting to know that we are not alone in this situation and can relate to others who are fighting the same battle.

Over the past few years, my parents have understandably paid more attention to my sister than to me because she was much sicker. I filled the little void this left in me by turning to people with cystic fibrosis and giving them what I wish I had had: the chance to have someone near me who was thinking about me and looking after me and to whom I didn’t have to complain about the despondency I sometimes felt, someone who simply knew and understood. Being someone for somebody.

It was with the idea of encouraging people to come together, without any risk of contamination, that I created a Facebook page called, “J’ai la Fibrose Kystique,” [I have cystic fibrosis] (in French only). The only condition for being a member is having cystic fibrosis. The purpose of this initiative is to help all (Francophone) members of the CF community get to know each other, have intimate discussions, share news and information, encourage and confide in each other and help those in need to develop a sense of belonging.

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