Imagine your daily life where simple activities like walking or running are very challenging. Imagine experiencing this reality when your life is focused on movement, nature and physical activity. A waking nightmare. But that's exactly what adventure guide and biologist Charlène Dupasquier has been experiencing since living with axial spondyloarthritis, a little-known autoimmune disease. A continuous quest for adaptation and resilience that will soon extend off the beaten path between Ottawa and Percé.
“Arundo Expedition” is the name of this great adventure that will take place in April 2024. A bike ride estimated at 2,200 kilometers and 30,000 meters of elevation gain was created to raise awareness of the disease and funds for research and support organizations.
A challenge that should also serve Charlène Dupasquier and her partner Tony to learn to live and grow alongside this invisible monster who has turned their lives upside down overnight. An adventure that highlights human and ecological values that they share together but also with the people they meet. Like a nudge before an illness, a wink into the future…
“It will be a big challenge and there are a lot of problems and questions that we don't have answers to yet, but I want to be able to let go, be flexible and adapt to what will happen,” he told Charlène Dupasquier last week.
“I'm doing it for others, of course, but also for myself. It's a project that encompasses everything I need to get through this illness, while combining my dreams and my passions.”
WHEN LIFE CHANGES
Charlène Dupasquier is a biologist, adventure guide, artist and co-founder of the organization Au coeur de la Tornade. A true lover of nature, adventure and sports experiences, for whom such a challenge would have been child's play – or almost! – not so long ago. This time, however, things will be a little different, a little more symbolic… and undoubtedly a lot more difficult.
The Saint-Joseph-de-Kamouraska resident's life was turned upside down three years ago when unexpected severe pain occurred in her back and pelvis. The day after a multi-day trip in complete autonomy, she thought she had injured herself, but the damage was ultimately much deeper.
The more she tried to get answers for months, the worse her situation became until one day she was unable to get up on her own because she was on the floor. Times were hard and morale sank as quickly as the body, she does not hesitate to testify to this today.
“I did all sorts of tests. We didn't understand what was happening to me and it became very difficult mentally. “Living with pain all the time is very tiring, it is a form of torture,” she stressed, adding that she had to stop hiking for several months.
It took two years before a rheumatology specialist finally diagnosed him with axial spondyloarthritis (SpA). A chronic inflammatory autoimmune disease that primarily affects the spine and pelvic joints.
The victims live with acute and diffuse pain every day. They occur in spurts and, like multiple sclerosis, make the simplest everyday activities more difficult. The insidious and little-known disease affects more than 300,000 Canadians each year. A number that is undoubtedly conservative since it only concerns those people who have been diagnosed.
“I never thought walking or running would ever be a challenge. I realize today that it is a privilege,” said the athlete, whose life plans have always been focused on sports and physical activity.
“We are currently still trying to relieve the pain as best as possible and find the right dosage in the treatment. We're not quite there yet, so I'm holding on. I’m learning to live with it all, the ups and downs, and I keep moving forward.”
MOVEMENT IS KEY
If there is a silver lining, it is that exercise, painful as it may be, is part of the solution for people struggling with the disease. An active life, combined with effective biotherapeutic treatment, can be a guarantee of a good quality of life in the future, even if those affected never really escape the attacks of pain.
Therefore, if we cannot cure axial spondyloarthritis, we try to live with it. Learn to find yourself and renew yourself at his side. Physical activity of any kind also helps ward off more serious consequences of a sedentary lifestyle, including ankylosis.
“I realized that adapting and being resilient was the way to go. I can't slow down everything I do. I cannot wage war against it, I must adapt and understand how to make the best of it,” said the adventurer.
“That's why I'm constantly looking for a balance. I can't walk or snowshoe? For example, I go cycling.”
Part of this philosophy is the birth of the Arundo Expedition, an initiative that will take the form of a “reconnection pilgrimage.” [avec la nature] and awareness” in the coming months.
The bike ride takes the couple and a friend, director and photographer, Richard Mardens, through Quebec's hinterland and its lush landscapes between Ottawa and Percé. The aim is to document their journey but also to produce a documentary with various speakers that can be presented at conferences and festivals to raise awareness of the disease and the reality it imposes on daily life.
“I wanted to put my job and my passion to good use. “I needed to do something similar to myself, in nature, in the wild and in sharing,” explained Charlène Dupasquier.
Show those affected that this is not the end of their life, that they are not the diagnosis and that their entire life is not restricted. The disease should not completely control her. You have the choice.”
“I personally need to do this too to move forward and make the disease a friend and not an enemy,” she added. I'm still in this whole process. I feel like I have to accept her and manage to live with her.”
As for the word “Arundo,” which means reed in Latin, this is no insignificant choice and provides a direct link to a fable by Jean de La Fontaine. “Instead of trying to be strong like an oak tree that might break in a storm, I need to learn to be a reed that is flexible and can be carried by the chaos of its surroundings,” he said. in the picture Charlène Dupasquier.
“At the end of the journey I want to turn my oak bark into reeds.”
A GoFundMe campaign has currently been launched to support the couple in implementing their project. The initiator states that a small part of the funds will cover the associated costs. The remainder will be donated directly to the Canadian Spondyloarthritis Association (CSA) and other organizations.
Another fundraising campaign will be launched along the way. A leg of the journey will also take place in Rivière-du-Loup and people will be invited to join them for one or more kilometers.
Charlène Dupasquier hopes that the project will stimulate movement away from performance. She believes that nature, adventure and nature are a cure for physical and mental ailments.