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Week Four – Manon (France)

Learn More About Manon

Description of your submission and why you chose it for submission:

I wanted to share the paintings that I’m most proud of with the community. These are my latest works, part of my space collection as well as my animal splash collection. I put all my emotions, my heart, ambitions into my paintings. It’s my way to not be overwhelmed with this disease and my way to communicate my feelings of the moment. I want to show to the world that even with a serious disease, we are all fighters in our own way: painting is my way to fight and live. I recently moved from Canada to Florida and I wanted to express my happiness from reconnecting with nature, with a bright and colorful palette for the animal splash collection. I am also a big dreamer and a space lover. By painting a world that most people haven’t seen with their own eyes, it gives me a lot of liberties and room for self interpretations. I love to spend hours upon hours to paint a planet, its atmosphere, a galaxy and questioning myself how it looks out there. Furthermore, space discovery is in my opinion, a very contemporary, timeless/endless and fascinating subject.

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

June 2021

Please describe your journey with NMO

Like all NMO stories, my journey is complicated. In 2018, at 19 years old, I experienced paresthesias all over my body and face. I went to the ER but no doctor understood that it could be a neurological disease and they discharged me from the ER with antidepressants because they were thinking it was “in my head” anD not a real neurological problem. I lived with cycles of paresthesiaS for 3 years, without medications and also with my flares of arthritis which restricted my walking. I felt weak and dizzy, I was losing balance and falling… I felt that there was something else, and, one day, I’ve seen a very slight “black filter” in my vision. After a few days, I wasn’t able to read anymore. So, I have finally decided to go back to the ER again. They diagnosed me with multiple sclerosis first, then NMO, and they kept switching their diagnosis. I was frustrated, sad and angry all at once. Finally, I knew several months later that it’s NMO. Today, I’m actually waiting for my very first treatment!

What has been the most challenging part of having NMO?

Everything is challenging with NMO. You need to accept this disease like it’s a complete part of yourself but you also constantly need to fight the symptoms! Also, the lack of awareness among doctors is horrible to live with. When you explain your symptoms to a doctor and they prescribe you with antidepressants or they tell you that your symptoms are unrelated and that they know better than you do…
I’ve been told “you have NMO” often, but no doctors takes the time to explain what it is. You can feel easily helpless, lonely, misunderstood and the lack of psychological support comes with it too.

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

Right after my bachelor’s degree, I had a lifetime opportunity to work at Amazon as a manager. Sadly, due to the large panel of symptoms that NMO gave me in addition to my arthritis, I couldn’t work anymore. I am a nature lover, a dreamer, and NMO forced me to transition from a warehouse environment to a life which I now love. It gave me the opportunity and the courage to undertake this transition and start living from my passion. With the people’s misunderstanding of my condition, I find painting to be a “safe place” in my life where I can fully develop and express myself.

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