Testimonial: To be someone for someone

Testimonial by Lysandre Barrette
Ile Perrot (Quebec)

The big day

It was September 28. Like every Wednesday, I worked as a legal assistant at my dad's law office. Around 3 p.m., I was at my desk when he walked over to me to hold out his cell phone without a word. “Hello? Maybe I have lungs! ” She was my younger sister, Anne-Sophie Barrette, who, like me, has cystic fibrosis. At the time, aged 19 and hospitalized in Sainte-Justine, she had been waiting for a lung transplant for 17 months, the last four of which were on the emergency list. I had imagined this scene hundreds of times in advance of my reaction, but now it was finally real. It took me a moment to realize that the time had finally arrived.

The journey to Sainte-Justine seemed endless to me. Around 9 pm, there were about fifteen of us, family and friends, in the small room n^O 6401, where the excitement and nervousness were palpable, waiting impatiently for confirmation from D.^R Ferraro. The phone rang, and Anne-Sophie answered in front of our inquisitive faces: “Yes... OK... OK... OK... OK”, then hung up calmly, with a slight smile. “Yes. It works! ”

And lo and behold, the countdown was on, triggering the start of a fabulous adventure. The one that would determine the outcome of a life of struggle where strength, tenacity and the burning desire to live would prevail to the end over the suffering, obstacles and constraints that cystic fibrosis brings.

The wait

In the ambulance to Notre Dame, I could no longer hold back the tears from running down my cheeks. Too many emotions were overwhelming me: excitement, fear, relief, relief, relief, anxiety, anxiety... As soon as she arrived, my sister was taken to intensive care until the donor organ harvesting was started, after which she would be transferred to the operating room to undertake this major surgery. Throughout the night, the sample was pushed back by the hour, which seemed to turn every minute into an eternity. In short, the tension grew as time passed. At sunrise, the signal was finally given. I will always remember her last smile in the elevator before the doors closed, as she winked at me, “See ya! ” Anne-Sophie was the most serene, peaceful and ready of all before the big departure.

This long night of waiting was the most trying of my life for me. I tried to relax by closing my eyes and concentrating on counting the palpitations in my head. I went through the past reviewing everything I had done to take care of my sister, sometimes at the risk of my own health. In my mind there were then numerous memories of the nights sleeping with her during her hospitalizations to ensure her presence (and not for the comfort of the mattress!) , give her attention, devote time to her and thus demonstrate to her the importance of the place she occupied in my heart and in my life.

The start of a revival

As I was lost in my thoughts, it suddenly became clear to me: the time was no longer for doubts about fulfilling my role as a big sister, or for the regrets and guilt that suddenly came to the surface. It was too late when I realized that I could have acted differently on numerous occasions. “Accept the past and come back to the present. At least be good at acting the way she wants you to do right now. She needs you,” I ordered myself. Once the operation is complete, the D^R Ferraro informed us that everything had gone well. “I even stitched the skin back together without deforming his tattoo too much! ” What a moment of pure happiness and relief! Words fail to describe the sensation that took hold of me at that precise minute, none of them being able to accurately translate this unspeakable euphoria. Five days later, with the help of the physiotherapist, I assisted her during her first walk over a distance of five meters, which was quite an effort. Witnessing this rebirth made me feel like I was witnessing a miracle. Today, eight months later, I am still barely getting used to seeing her run!

The CF and me

Now let's go back in time. It was at the age of six that I realized that my condition differentiated me from other children at school. Indeed, I was the only one in my first year class who swallowed dozens of pills a day, who received clappings daily, and who had to do a half-hour treatment of respiratory therapy morning and evening, not to mention regular visits to Sainte-Justine and repeated intravenous antibiotic treatments. This realization inevitably prompted me to ask myself, with a feeling of injustice: “Why ME? ” However, experience has taught me that in order to accept this burden, you must avoid feeling sorry for yourself at all costs. As a result, I have adopted an attitude towards the disease that consists in transforming my feeling of powerlessness into a great positive power, the same as that which unites me and my sister. Addressing this challenge one day at a time constantly strengthens our bond and helps us face the fragility of life that we inevitably face.

Accomplices for life

I consider my sister to be my only accomplice fighting this disease day after day. Together, we overcome difficult times such as long hospitalizations, we motivate each other to do our treatments, to maintain courage and to let go of the fact that our health slips into our hands. It is in this complicity that we express the same exasperation with the eternal parental question: “Did you take your enzymes? ” In short, we are always there for each other, and our soul mates complement each other.

I admit that watching my sister's condition get worse all the time was such an emotional ordeal that I forgot the burden of my own illness. His health came before mine. I was doing the impossible for his well-being. I might have better managed my torment in this situation if I had the tools and resources I needed; however, at the time, I was having a great deal of difficulty sharing my anxieties. Buried, ignored and accumulated during all these years of silence, they led me into a very deep and long depression. Through this process, I have at least assimilated a principle that is still not easy to apply even today, but which boils down to saving yourself before saving others.

Today, after her transplant, the roles are reversed, and it is Anne-Sophie who takes care of her big sister. I am reaping from her what I have given her over the years, and I interpret this change in role as an expression of gratitude, a form of thanks. This reward surpasses all expectations and declares my mission accomplished. My sister is an inspiration of courage and encourages me to fight relentlessly against this disease in the hope that by the time my lungs are completely destroyed, there will be another option but death. A second chance will be offered to me. It is hard for me to imagine living with healthy lungs, because this feeling is already a vague memory for me, but I believe in this liberation. In turn, I will begin a new journey in which I will finally be able to give free rein to my laughter without suffocating and breathe in the scents of autumn to the fullest.

Solidarity and mutual aid: the key to good morale

In conclusion, I believe that solidarity and mutual assistance between people with cystic fibrosis are rewarding. Knowing that we are not alone in this situation and being in relationships with others who are going through the same battle is reassuring and comforting.

In recent years, my parents generally paid more attention to my sister than to me because she was much sicker, which is understandable. So I filled the small void that inhabited me by turning to other people with cystic fibrosis that I met by giving them what I would have liked to have, that is, the chance to have someone around me who thinks of me and takes care of me, to whom I do not need to complain to express the overwhelming feeling that sometimes invades me, someone who knows, who knows, in short, who simply understands,. To be someone for someone.

It is therefore in the perspective of encouraging a closer relationship between us, and this, without the risk of contamination, that I created the Facebook page “I have cystic fibrosis”, whose only condition to be a member is to be affected by the disease. The purpose of this initiative was to allow all members of the FK community to get to know each other, to chat with each other in an intimate way, to share news and information, to encourage each other, to confide in each other and to allow those who need it to develop a certain sense of belonging.

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