In April 2015, I suddenly lost my sight for several days. A black hole of incredible violence that was matched only by the announcement, which fell like a cleaver, of the diagnosis of multiple sclerosis (MS).
An autoimmune disease, in which the immune system attacks the myelin sheath that wraps the nerves. This disrupts the transmission of information between the brain and the body. Terrorized by this disease which threatens the body with degeneration over the course of life, I collapse, then it is rage, hatred and the desire to crush it that prevail. Results : I am in denial. As a business school student, I don’t listen to the signals sent by my body. And, four months later, I lose my sight again, while I successfully complete a stressful professional internship. I understand then that, if I persist in this way, the handicap is not far away.
I realize that to accept my disease, I must reconnect the three pillars of body, mind and soul. From there was born my project to travel for eight months through three countries. New Zealand for the body, and therefore walking, climbing, camping, sweating. Then Burma to discover meditation and put order in the thoughts that my mind can no longer sort. Finally, Mongolia to reassemble the pieces of my being that illness has scattered. This trip will thus be my antidote. I name my project “Seper Hero”, Sep being the acronym for multiple sclerosis and, to finance it, I raise funds via social networks. And it’s off to New Zealand… As I walk, I scream, I empty myself of my hatred, my fear, my anxieties… and I think less and less about illness. My legs move faster and faster. I feel the pain in my muscles, as much as the fear of not being able, one day, to feel this so stimulating pain. I scream to remind myself that multiple sclerosis won’t stop me and won’t take away those feelings that allow me to live and move forward.
The strength to accept the disease, we all have it in us…
The second trigger, capital, occurs after a month of travel, so six months after the diagnosis, when I renamed my illness Rosy. My emotion is enormous, because these four letters are synonymous with love and peace. I have a small rose instead of a sclerosis, a graceful and pungent flower at the same time. The disease will not be a brake on my life and will not turn it into a nightmare. In the heart of the Mongolian steppes, solitude allows me to refocus and catch up with my Rosy in her flowering to ask her to grow with more petals than thorns, I am learning not to reject her… The journey m gave invaluable inner strength. We all have it in us, we have to wake it up. I came back into osmosis with my Rosy, I learned to accept it and I can even say today that I “love” my disease. It is not a provocation, nor a utopia. I love him, because that comes down to loving me. Faced with the diagnosis, we are reborn differently, I became another woman with this disease, and I had to learn to appreciate it. I have found an inner balance, I no longer have hatred towards myself. This is crucial psychologically in the face of an autoimmune disease, where our own being is destroying us.
My association will help others to carry out their project
My strength is also listening to my little voice which tells me every day that anything is possible. I see more of Rosy’s petals than her thorns. I do things I never imagined I would do, or thought I could do. Without this Rosy, I would have missed out on my life, without knowing it. Admittedly, Rosy has not disappeared from my MRIs (medical imaging technique) and I could be afraid that my legs would fail me, but now I have enough confidence not to fuel this fear. For two years, I haven’t had an outbreak, I feel good and I don’t take any treatment, although I was advised to do so to limit the evolution. Knowing that it works for some patients and not for others, I decided to wait… For now, I’m finishing my master 2 and I’m building my Seper Hero association (to follow on Facebook). The idea? Allow sick and healthy people to carry out a project (music, travel, sport…), as I did alone, but this time in pairs, where one would coach the other. The action will be central, not the disease. To accept it, you have to do things you love. Fear drives us away from anything that makes us feel good. One day, a neurologist said to me: “Go for it! Believe in yourself, continue with your projects”. These simple words, of such power, gave me hope, strength. It meant that I could believe in my future. I would like to transmit this confidence in life.
3 questions for… Pr Patrick Vermersch, neurologist at Lille University Hospital
What are the symptoms of multiple sclerosis?
This autoimmune disease, which affects three women for every man, develops in flare-ups in 85% of cases. The former often go unnoticed, as healthy areas of the brain take over from those that are affected. Relapses last between one and eight weeks during which persistent visual or balance disturbances, urinary leakage or tingling in the hands or legs, with chronic fatigue. In 15% of cases, the evolution is progressive, without flare-ups.
Do we know better today how to control its evolution?
We have made great progress in push-up forms. It is no longer synonymous with an inevitable handicap. Fifteen years ago, we would not have dared to speak of remission, we were just slowing down the evolution. With today’s treatments, talking about remission is realistic: not only do some patients not have a flare-up, but they keep a stable neurological examination and MRI. This remission is achieved in almost 50% of patients, provided they can be treated early. We don’t say it enough, it’s a therapeutic emergency!
Where is the research?
Advanced trials are underway to try and restore the myelin sheath. We hope to have a molecule within five to ten years. Treatments intended to increase the resistance of neurons and better protect them are also being studied. Finally, against the progressive forms, a treatment acting directly on certain immune cells is being tested.
More informations
Braving the disease, Marine Barnérias went to the other side of the world. She recounts this journey that changed her life…
“Seper Hero”, Marine Barnérias, ed. Flamemarion, €18.
Read also:
Multiple sclerosis: the benefits of sport demonstrated
Multiple sclerosis: immunosuppressive therapy would be effective
Multiple sclerosis: a promising drug against both forms of the disease
