2023-07-21 07:43:14
Solar, smiling and full of energy: who can imagine, seeing Mona, that she is sometimes overwhelmed by pain and that she fights once morest illness on a daily basis? This is however the case, and she tells in a book – Arnold and me – her journey with an Arnold Chiari malformation, a rare disease of the cerebellum. We met her and she was kind enough to tell us regarding her journey and how she was finally able to take part in the La Parisienne race.
The text below is the transcript of the video interview.
Mona, can you tell us what illness you suffer from?
Notably because of my Arnold Chiari malformation, I spent four years bedridden with a paralyzed leg. My left leg was completely paralyzed and through scientific research, I discovered that there was a surgery that might help me get better, especially in Italy. So I went there in May 2021, had innovative neurosurgery there, which gave me back full use of my left leg.
SO it was quite an incredible experience, because I didn’t expect so much. This surgery, therefore, is called a section of the filum terminale. This is the basis for stopping the evolution of Arnold Chiari, who is a very rare disease of the cerebellum. It is the cerebellum which begins to descend. So it’s very rare and it’s very poorly supported in France. So I had this surgery in Italy and only a few hours later I might walk normally, whereas for more than three years I walked with a cane.
“La Parisienne, an incredible experience”
Following this surgery, I wanted to test my new limits a little bit and find out how far my new legs would be able to carry me. And I decided to take part in the La Parisienne race. So, in September 2022, I ran a distance of 10 km in the disabled category and I won this race in disabled sport. And it was an incredible experience because I never thought I would ever be able to run.
SO, it wasn’t really the finish line that was my greatest victory, but rather the start line. I mean, I’m here, even if I don’t finish the race, at least I try, I try, I see how far I can go. The first six kilometers were fairly straightforward, but the last four were extremely difficult.
I told myself that I would never make it. I didn’t want to let go and in fact, I had the good idea to wear a T-shirt on which I had put: “1 YEAR ago, I walked with a CANE. Today I RUN” and all the women in fact, who passed me by reading this message encouraged me so much that they gave me the strength to continue and to arrive at the finish line.
I had the good idea to wear a T-shirt on which I had put: “1 YEAR ago, I was walking with a CANE. Today I RUN” and all the women in fact, who passed me by reading this message encouraged me so much that they gave me the strength to continue and to arrive at the finish line.
So, I suddenly received a trophy. And then, I was showered with gifts by the Parisian and I am very proud of this victory. But I’m even more proud of my participation. That we were only women was very, very important. We have an incredible strength together that I would never have suspected. And really, we all carried each other.
Even me, sometimes, when I was in difficulty and I met someone even more in difficulty than me, and well, I was helping him. I have incredible energy. In this crowd, there were 15,000 participants. It’s incredible energy and strength.
What message do you want to convey?
A message to pass on to the relatives of the chronically ill. It is that the most important thing to help a person who is suffering is to listen. It really is. Sometimes the loved one can feel helpless. But just listening can be an incredible strength for the person who is sick, just being there sometimes. The presence, that can be enough, even if we don’t necessarily have an exchange, a dialogue.
Being present for a person who is suffering can already change a lot of things. Me, when I have pain, I have a headache that is seven or eight on the pain scale. I experience it much better when I have someone next to me than when I’m alone.
Why did you choose to write a book?
So I had it in mind for several years already. At the start, I told myself that I was just going to write this book for myself, for my loved ones, for my children, so that they also understood why I had made certain decisions at such and such a time.
So, it’s true that I participated in a competition with this book and I won a literary prize. Since then, this book has been accessible to editions of the Net. But it’s true that I have many foreign scientific communities. They ask me for a translation of this book and my publishing house is too small to offer me this kind of service. So today, I need to find a big publishing house that believes in my book and that they can distribute it more widely. Because this book helps a lot of people. Just since its release, I have allowed twelve people to undergo the same surgery as me and recover the use of their legs. Then there is a second message which is for me the most important, it is that people who suffer from chronic illnesses, it is very difficult to live with an invisible handicap. Me, the first, I do everything to break the codes, I do everything so that it doesn’t show and it’s voluntary. I think we have to shake up mentalities. We must make it clear to people that it is not because we look healthy that we really are.
If I was able to spend 4 years in bed with a paralyzed leg, if following all that, I was able to participate in the Parisienne and run ten kilometers. But all hopes are allowed. Actually.
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