Since I was a child I have seen my mother, grand-mother and other family members live with the handicap, accepting it more or less. As the spastic paraplegia I have is caused by a dominant gene, I was aware that I had a 50% risk to be disabled. As I witnessed the progression of the disease among my relatives, you might think that it was easier for me to accept it. Actually it is not that simple.
At first for me, diagnosis was not a tough stage. I took the initiative to face it when I saw the first symptoms, I knew what was happening to me. But, as the disease is degenerative, I was about to go through that acceptance process again and again. Confronted with the first falls, the way people started to look at me, the progressive loss of my walking ability, I had to accept those new difficulties every time. Accepting takes time and, sometimes, as soon as we think we made peace with our condition a new difficulty shows up.
New Zealand roads are stunning!
I feared the moment when I would need a wheelchair. One of my physiotherapists told me once: “Even if you get yourself prepared for it, it is always difficult”. I was afraid. Afraid of what I could feel, afraid of what other people could think, afraid of not accepting myself.
Eventually things went quite easily. I wanted to travel for a long time so when I received my first wages I started to save up and, with Franck my partner, we decided to go on vacation to Japan for three weeks. It was obvious that if I wanted to really enjoy this journey, without suffering from pain and tiredness, I had no other choice than to bring a wheelchair. So I went to buy one.
Surprisingly I was not overwhelmed by sadness, embarrassment or shame. I felt free! I found my independence again. This feeling of freedom has been multiplied by ten during our Japanese trip. I became aware of all the things I could do. I opened myself to the world and, by doing so, I rediscovered myself. I was able to do a lot more that I used to do before. My handicap was not an obstacle. It was I who was setting limits. This travel was an important moment of my life. I understood and felt a many things. I was really enjoying life. I was happy and unfazed. I accepted even a bit more my handicap and I discovered my passion to travel and explore, to wanderlust.
Discovering Odaiba in Tokyo.
Over the months and after another trip in Portugal, I understood that travels were going to be important in my life. Leaving for holidays was not enough anymore. I wanted to live abroad, to stay in a different country for a extended period of time. So, with Franck, we left to New Zealand with a one-year visa. Plus, as it was too tempting, we didn’t come back to France in a straightforward way: we travelled through south-east Asia during almost four months and finally got back to motherland after sixteen months. Sixteen months of discoveries, amazing landscapes, new experiences and happy encounters. Sixteen months filled with emotion. Living without fighting my handicap and accepting it allowed me to live so many experiences I would have never done otherwise. Still sometimes I surprise myself thinking: I left everything to live on the other side of the world! For the first time in my life I rode a horse, I gave English lessons to kids in a remote area of Indonesia, I have done some helpX in Kiwi families, I sailed for three days in a canoe on a river and I even try disabled ski and scuba diving!
Random encounters when strolling in Sulawesi (Indonesia).
I also remember the day when, with Franck and our friend Dimitri, we decided to go for a long walk on a glacier moraines to get as close as possible to it. I didn’t reach the glacier: I stop a few meters below, before the last slope. It was too steep for me to be able to climb it, even with Franck’s help. So I let the guys finish the walk and I stayed in my wheelchair admiring the glacier. I was there, unmoving under the rain, looking back on how far I had come since I left France, a few months before. I was happy because of all the things I accomplished. Delighted to see the pride in the eyes of the man I love when he looked at me. Glad to receive other hikers support, to see them realise that it is possible.
Defying Franz Josef glacier!
That’s in moments like this one that I feel the most alive. So there will be a lot of other adventures, other encounters, in other countries in the future! All these journeys will be different but all will have something in common: the wish to meet, to learn more about different cultures and to convey a message of hope regarding disabilities. Without my condition I would have been a different person. I would have had different desires and maybe I wouldn’t have travelled as much. But my disease is a part me, and it made me aware of what life has to offer, even with a handicap. We often set ourselves barriers, while we could be happy despite the handicap. It is possible to have dreams and make them come true. It is to convey this message that I will continue to tell my adventures. To bring a small dose of hope in this not always easy daily life, while also bring people to reflect on accessible tourism.
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