I was 19 when I was diagnosed with chronic kidney disease. Two years later, I was hardly urinating anymore, a sign that my kidneys were no longer working and that my kidney failure was end-stage. Waiting for to be grafted, I started dialysis at the hospital in 1996, at a rate of four hours, three times a week. Every two days, the machine took over from my sick kidneys and relieved my body, removing the water and toxins accumulated between each session. Between 1997 and 2012, I had three transplants, which lasted 3 years, 4 years and 2 years respectively. I knew that a kidney transplant does not last all life and, inevitably, I would go back to dialysis, but it was far too short.
Since 2016, after having followed a five-week training course, I have been carrying out my hemodialysis at home, every morning, for 2 hours, six days a week. Most often, after my 8-year-old children have left school and 11 years old. If they are there, they regularly come to have breakfast in my office, where I have installed the machine, so that they can work during dialysis. While when I went to the hospital, I interrupted my activities and left, I felt like I had been absent from my own life. To come back to a life that never expected me. Today, there is more continuity, in particular because I can go to an appointment immediately afterwards, which was impossible for me before, so intense was the exhaustion after a four-hour dialysis. Practiced on a daily basis, it is less violent, because we lose less water, therefore less weight, about 2 kilos against 4 in the hospital. Lose so much requires intense effort, superhuman, to the body.
Children cope better with illness
I waited to choose this mode of dialysis because I did not want to bring the disease home. But, in fact, the children lived quite painfully to see me leave three times a week. The fact that I treat myself but never get well was difficult to understand. Seeing dialysis concretely has made it less dramatic. During the first session, my son told me: “I thought you were stung all over the place!”
Now the apprehensions and the mystery that surrounded him are lifted. Home dialysis allows me to live in the best possible conditions and it represents the best treatment I have had since the onset of my illness. But it remains a “cut off time”, title that I therefore gave to my documentary. Indeed, even at home, we get out of our ordinary life, there is a break in time while we are connected to the machine. Illness never takes a vacation. And neither did dialysis.
Impromptu vacations are no longer allowed
I have to organize my life around dialysis, I never have a break. During some shoots, I happened to do it at 4 a.m. to be free to work. When traveling, always stay close to a dialysis center. We are not allowed to improvise a walk and see what will be found on the path. The centers being few, you have to book well in advance and I am not always sure to have a place. But I travel anyway, I have come back from Montreal with my family.
The other very painful element is having to strongly restrict yourself from drinking between two dialysis treatments, which means that thewe are constantly thirsty. You can only drink about 500 ml per day, including the water in fruits and vegetables. The alternative is to suck on ice cubes or drink very cold, in order to quench your thirst with little liquid, but it’s tough.
When you realize that it’s for life, it’s dizzying!
Sometimes people talk to me about courage, but I have no choice but to do otherwise. Dialysis is what keeps me alive. What I have built, especially my family, helps me to hold on. Sometimes I wonder: “What life would I have had without the disease?” Because I had to make choices and accept painful renouncements. Overcoming them gives great strength. Living in this adversity develops an acuteness of what is essential and a way of moving forward, despite everything, which nourishes human relations as much as my artistic reflection. Knowing what it means, viscerally, to be alive feeds and informs my films, even if, of course, I would have preferred not to be sick.
© Time cut off– Benjamin Silvestre / Gald production 2018