“I’m the most amputee in the center, that’s how it is! » Sitting on a bench in a corridor of Tourmaline, a rehabilitation center in Saint-Herblain near Nantes, Lucie does not lose her smile, even when she almost spills her cup of coffee. At 42, this mother of three children is nevertheless going through a real “fight” after having had all four limbs amputated just five months ago.
With gentleness, still a little anger, but above all a lot of perspective and hope, this dance and piano enthusiast agreed to confide in 20 minutes about the malaria which almost killed her, her new body, and the veil that she wishes to lift on the difficulties, particularly economic, of amputees in France. Interview.
At the end of April, you had both your feet and both your hands amputated, and you are already here, ready to tell your story…
It all started with a personal need, that of financing an automatic car and a prosthetic hand, for which I launched an online prize pool, always open. But as I discovered the plight of amputees in France, it became more than that. Even if it is very difficult to expose myself, especially with a body that I am just beginning to accept, we must talk about these difficulties, which are little known because they only concern a few people. In fact, when you are an amputee, social security only reimburses certain “entry-level” prostheses. For the feet, they’re not too bad. But for the hands, the index and middle fingers are stuck together. They form a sort of “crab claw” with the thumb which does not allow much other than grasping large objects. With it, you can’t tie your hair or tie your shoelaces… Even using a pencil or a fork is very complicated.
You don’t have access to other types of prostheses?
Journalist Matthieu Lartot, leg amputee, spoke recently on this subject: to get the cutting edge of what exists, you have to have money or there must be a third party responsible. For example, the polydigital prosthesis that I hope to be able to buy costs exactly 105,800 euros, to be changed every five years! Who can afford this? In the meantime, we find tips: we replace our trouser buttons with elastic, we put key ring loops on the zippers, which we pull up with an orthosis. These are some kind of resin tips that I carry everywhere [elle nous montre un sac coloré en tissu] : I have one with a hook for dressing, one with a stylus for the phone, another for putting on makeup…
Your amputation is in fact the consequence of the malaria that you contracted, and which almost killed you. Tell us.
In February, we went to Africa with my Gabonese partner, to discover its culture, meet his family… We returned at the beginning of March, and a week later, I felt like I had the flu. I went to bed with a Doliprane and after two bouts of discomfort, I arrived at the emergency room in Saint-Nazaire. No one says it to me but I hear it: “severe malaria”. I knew about this parasite, which is transmitted by a mosquito, but I did not know that it could kill. There is no vaccine but there is preventative treatment. I hadn’t taken it because I knew, after several trips to Africa for work, that it made me sick.
How did the disease progress in you?
In intensive care, I am told that the liver and kidneys are affected, the lungs perhaps soon, and that if it goes to the brain, “it’s death”. The intern uses these terms. I have a fever of 42 and at the same time very cold hands and feet. What happens is the parasite attacks vital organs, so the immune system makes a choice by removing blood from the feet and hands to save them. I was plunged into a coma twice, for several days, with a very large dose of treatment and a life-threatening prognosis. When I wake up, my extremities are black, but are still there. I understand quite quickly that I am going to be amputated, but I have to validate it because we cannot do that without my agreement. They explain to me that there is a risk of septicemia, therefore again a risk of death. It was terrible but I had my feet amputated on April 21 and my hands on May 4. It was my birthday, but I didn’t care… (laughs)
How is life going afterwards?
It’s so gloomy that you can’t let yourself get depressed, so I threw myself into rehabilitation. I remember my first physio session here, it was great. Being out of breath again, feeling the sensation of your body exerting itself, gaining strength… From the beginning, I clung to my autonomy, learning to walk again was the symbol that life was going to resume, which means that it was very quickly for me: in three weeks, even if at first I felt like I was on stilts, I was able to put on the prostheses. When I got home [elle se rend désormais au centre de rééducation trois fois par semaine], for my children’s return to school, it was more complicated. You can’t wait to return to this familiar environment, but in the end it is totally hostile to you, because nothing is suitable anymore. Plugging in my phone, for example, took me an hour the first time! I complained, I railed against this nozzle having to be put straight… There are plenty of failures in my day, but I read that even a lion fails several times before succeeding in catching a gazelle (laughs) . I try to do as much as possible by myself, with my arms.
How do we find the strength to face all this?
One day I said to myself: “you have more feet, you have more hands, you have three children”, and I felt a risk that I was falling into something very dark. My belief is that we do not control our life, simply the way we decide to go through things. I quickly realized that if I got angry every time, it would take away the energy I needed for my rehabilitation. Before I was a very impatient person, now I am learning failure, self-indulgence. Be careful, I’m not saying today that what’s happening to me is a gift, in fact I have great moments of despair. But I stopped asking myself “why me” because I know that all of this will make me stronger. Strong in the sense that I allow myself to feel bad and cry, but afterward, I get up again.