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Week Two – Nelly (France)

Learn More About Nelly

Description of your submission and why you chose it for submission

I have always loved art in all its forms, since childhood: dance, music, photography, drawing and painting. I think it’s a very good way of expression without seeing to use the words…
I have been a prison teacher, passionate about my work, for 13 years now and I try as much as possible to share this form of freedom of expression in the form of a plastic arts workshop.

When were you (or your loved one) first diagnosed with NMO?

My first diagnosis was November 18, 2016, it’s a date that will always remain in my memory because at the time I was in
wheelchair and I was thinking of asking for a second on multiple sclerosis and that day I learned that I had Devic’s disease, mog+, today called MOGAD and I was really lost and with little information to the time.

Please describe your journey with NMO

A day with the NMO or MOGAD, for my part, is an almost normal day. I am happy to be able to walk again as before my paraplegia even if obviously every day, every morning when I wake up, the daily pains remind me that I am sick . We learn to live with it, we didn’t choose it but rather than suffer the disease we live with it and I chose to live it well. A day is waking up with pain in the legs, tingling in the feet and often lumbar pain because paraplegia leaves sequelae. To live with it, I take a lot of pain medication every day, which has allowed me today to resume my job as a full-time teacher. My main difficulty is standing too long in a static position and trampling because it accentuates my pain. Fatigue is also present in my daily life, I try to listen to myself but despite everything I remain very active because I multiply activities such as walking, cycling, swimming, dancing and music as soon as possible. Despite everything, sometimes with fatigue, I can have stiffness in my legs, limp if I force a little too much.

What has been the most challenging part of having NMO?

The hardest part for me was finding myself in a wheelchair almost overnight and not knowing if I was going to be able to walk again. Subsequently, the many examinations and treatments to treat me, the plasma exchanges and all his trips to Paris were very tiring. The daily difficulty of being in a wheelchair, then learning to walk again and finally the unbearable pain despite the medication to relieve me. At the beginning, it was quite complex to find the right drugs and the right dosages to relieve my pain. Today, the pain is still present but we learn to live with it.

Please describe in a few sentences how your art submission
reflects your life with NMO

I think art is important because it reveals and reflects a person. I could not live without means of expression, without music, without passion. I love painting because I love color, in my life and around me. Colors can express a lot, like our emotions, those that we can’t always translate with words. When I paint, I dare, I am myself, whole, I forget my worries and my pains, I am free, to think and to say through the colors that I use my emotions, my desires, through my gestures also I sometimes unconsciously translate moods. I am me, finally, I tell myself that nothing has changed, I am both the one before and the one today.

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