Nicolas Williart is 48 years old. Affected by retinitis pigmentosa at birth, he had known for a long time that, little by little, he would become blind. He first thought that euthanasia allowed society to get rid of troublesome people. But for the past fifteen years, serious pathologies, leukemia in particular, have led him to wish for a change in the legislation in order to have “the assurance of being able to leave serenely”.
A first white cane at 30, then a guide dog. Nicolas Williart today only distinguishes shadows and contrasts. His retinitis pigmentosa, a birth defect, causes almost complete blindness. “I wasn’t in pain, I didn’t think at all about the question of the end of life. I was just dealing with the lack of accessibility day after day,” he says.
Fifteen years ago, he suffered from pleurisy and pericarditis, inflammations of the skin of the lungs and heart, probably caused by a virus. This earned him six months of hospitalization “dotted, I thought of nothing, I was in pain and that’s it. I was 34, I thought I was going to get out of there”.
The time of the first questions
Eight years later, by chance, he was diagnosed with leukemia. He was then 42 years old. “I was sent to chemotherapy before I understood what was happening to me. » Then, very quickly, he is asked to write advance directives. He is going to receive a stem cell transplant. But he must wait for a place to become available for the intervention to be carried out.
“And there, we have time to ask ourselves questions. I had understood that the doctors were not sure that I would get out of it. » However, he does not remember well what he had indicated he wanted at that time, in the event of a sharp deterioration in his state of health.
In 2020, three years after the transplant, he underwent general anesthesia for the removal of five teeth. In the process, an ophthalmic shingles is triggered. This chain of health problems causes significant pain and serious breathing difficulties. So, his position vis-à-vis the end of life is strengthened.
Avoid relatives to decide
He is a member of the Association for the Right to Die with Dignity (ADMD). “I want to decide for myself and I want to save my loved ones from getting me hanged or from having to jump under a train. » In the event of a recurrence of his leukemia, he thinks he is not ready to undergo another transplant. “Intellectually, I tell myself that no, I will not do it again. But we’ll see, if necessary, if I have the courage to say: that’s it, it’s over. »
In his view, the evolution of the legislation to allow active euthanasia would bring “form of insurance to be able to leave serenely. Or not to…”