The first time I understood that my mother had an incurable disease, I was 17 years old. It was she who announced the diagnosis to my sister and me: “Charcot’s disease” or amyotrophic lateral sclerosis (ALS), as the doctors say. A degenerative disease for which there is no cure. In a few seconds, she also told us that the life expectancy of the sick was three to five years. In my head, I did a quick calculation and realized that with any luck I would have my mother until I was 22. Without realizing it, my life had just changed at that moment.
It all started in 2015 when I was 16. My mother had told us regarding a kind of “heaviness” in her leg. We saw with my sister that she had difficulty walking, but she was not the type to complain and even less to make an appointment with a doctor. After a few months, this heaviness moved to the level of the arm. It was starting to keep her from working properly in her wedding dress shop. It was there that she decided to consult her attending physician who sent her to the hospital for examinations. A neurologist made her pass a battery of tests to proceed by elimination to the diagnosis leading to Charcot’s disease, while sending my mother back to see the attending physician. The cases are so rare that the doctor asked for a second opinion. My mother spent a week in the neurology department of Mulhouse before a doctor confirmed the first diagnosis.
No health professional came to see us to explain to us what this disease was, the different stages, the consequences on my mother’s state of health. We returned home without knowing anything. Everything I know, I learned on the Internet. I kept face, and I didn’t say anything to school or my friends. I wanted to be a young person like the others. It was the year of the final year and I had three unmissable appointments: the baccalaureate, the permit and the entry into a nursing training institute (IFSI). After the announcement of the illness, I wondered if I might go all out while also taking care of my mother. I thought regarding giving up taking the IFSI entrance exams, in particular because the cost of the exams was high. I didn’t want to weigh on my family financially when my mother might no longer work. It was my father who held on and encouraged me to do it.
At home, daily life was punctuated by the progression of the disease. In the early days, I helped my mother with meticulous acts like the laces of her shoes or her hair. ALS is a rapidly progressing disease and within two years my mother had lost mobility and speech. I led a double life: the day in training at the hospital or in class at school and in the evening with my mother providing him with comfort and hygiene care, preparing food for him, tidying up the house and doing groceries. It was also at this time that my parents decided to divorce.
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