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« My job is to make people’s eyes sparkle »

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Vanessa Grouiller, who is a teacher and diving instructor at the Subaquatic Club of Bellegarde-sur-Valserine, was at the heart of organizing the diving weekend with the Children of the Moon in Annecy at the end of August. Here are some reflections on two days of emotion and dives with stars in their eyes.

The 2019 edition of the diving workshop with the Children of the Moon took place on August 23 and 24 in Bellegarde-sur-Valserine and Annecy. How did this weekend go?

I really appreciated the atmosphere; it was a weekend full of emotions for the children and the instructors. The “Children of the Moon,” around a hundred in France, have a rare genetic disease called Xeroderma Pigmentosum. These young individuals do not filter sunlight, especially ultraviolet rays, which can cause premature skin aging and early cancers if they are not protected. This workshop involved several dives, including sessions in a protected pool environment and natural settings with a night dive in Lake Annecy. The workshop has been held for 4 years, and this time, they were testing the Bathysmed anti-stress diving protocol for the first time – I am a certified Bathysmed instructor. The goal of this workshop was to help them combat the hypervigilance they develop in their daily lives, similar to individuals with post-traumatic stress disorder, with whom this protocol has been tested and developed.

Why is this workshop important for the Children of the Moon, and how did you meet the president of the Children of the Moon association?

The origin of this project dates back to 2015 when a friend, Wafa Chaabi, introduced us to her association. The project quickly took shape, with the Subaquatic Club of Bellegarde playing a crucial role over three years, continually refining their approach.

This workshop provides an opportunity for these children to meet others of their age facing similar challenges. It offers them an extraordinary experience, especially for those who have never been in contact with aquatic environments. Many of them do not know how to swim and encounter a pool for the first time during their immersion at the aquatic center, whether they are 10 or 25 years old. This weekend allows them to discover a new environment, explore unknown sensations, and acquire tools to manage their emotions through the Bathysmed protocol. The proposed program is comprehensive, adapted to each individual’s age, diving level, comfort, and specific facial features resulting from any surgeries they may have undergone.

Dive Workshop: Children of the Moon

What was the specific organization for this diving workshop with these children who have different ages and specificities related to their illness?

We were in constant adaptability so that everyone could enjoy the pleasures of diving: the use of a facial mask for Fatih, who couldn’t hold the regulator in his mouth, verbal explanation of signs for Moussa, who is visually impaired, or drawings and explanation brochures for Ismaël, who is hearing impaired… For these two days, in addition to preparing adapted equipment, we were in contact with various sponsors for equipment, facilities, meals, and accommodation for the instructors. We ensured a good distribution between Bathysmed and FFESSM instructors for well-balanced coaching teams. We maintained constant communication with the communication manager to highlight these children as much as possible, even though they are deprived of it. In the end, once the logistics were managed, laughter, jokes, and humor punctuated these two intense days of emotions.

How did you experience once again accompanying young people for whom even the slightest UV exposure poses a threat?

I put pressure on myself with the dosimeter in hand; I was also in hypervigilance, on the lookout for the slightest UV ray that could harm them. When accompanying young XP individuals, you also develop this constant vigilance that is part of their daily life. The instructors, organizers, and journalists quickly acquired the basic safety rules: no open doors or windows without announcing it to everyone beforehand. Once the classrooms were secured, a final check with the dosimeter, and I gave the OK for release (for both them and me)! Every window, door, light, or detector is checked, and the entry route into various rooms is marked. Only once the sun has set and UV is nonexistent can they finally leave their protective bubbles and return to the common reality until the next morning. I would like to express immense gratitude to my club, which accepted and adapted to this new organization. They are eager to repeat the experience, and I’m already thinking about next year!

These young individuals and their families develop hypervigilance due to their condition. What are the expected effects of the Bathysmed protocol on these aspects?

The disease isolates these young individuals, who have limited contact with others their age. They have a shifted lifestyle and are partly deprived of their childhood activities: simple pleasures such as playing on a playground, swimming, or enjoying the beach are restricted for them. If they engage in such activities, it’s often during the night, away from other children. Families do their best to help them live like others despite their differences. These “sun sentinels,” vigilant against any UV rays, share a commonality with adults experiencing post-traumatic stress disorder (PTSD): hypervigilance. Individuals with PTSD develop reactive hypervigilance following a major physical and/or psychological trauma. The children develop hypervigilance due to the constant threat of UV rays, which are ubiquitous. Additionally, like other young patients, they face major daily stress from numerous medical appointments and surgeries that sometimes alter their appearance. The gaze of others is also a source of stress. The Bathysmed protocol was developed during trials with survivors of attacks and military personnel experiencing post-traumatic stress. This innovative protocol combines recreational diving techniques with subaquatic exercises inspired by sophrology, mindfulness meditation, and neurolinguistic programming.

The benefits are immediate: “It’s like a window of freedom, a protective bubble that makes us forget everything,” Fatih expressed after the dive. Underwater, there’s no sun, no intrusive and uncomfortable looks, no worries about managing secure movements. In the world of almost silence, everyone is there facing themselves and finally equal to others. The goal is to help them reconcile with their bodies and sensations, their senses, to free the mind from overwhelming thoughts and emotions.

Can you tell us about your diving experience and your interest in the psychological effects of diving?

I did my first scuba diving experience in Bandol with my best friend in 1998. I obtained my level 1 certification in New Caledonia in the year 2000 and immediately joined my beloved club in Bellegarde, which I haven’t left since! I then progressed through levels 2, 3, and 4, followed by the MF1 instructor certification. Although I completed my initial MF2 instructor training, I didn’t pursue it further to focus on obtaining my State Diploma at CREPS in Antibes. The theme of both my training and professional portfolio was aquaphobia. I ventured into creating my own structure, ZEN&O, where I welcome children and adults, whether or not they’ve had a negative experience with water! The goal is to reconcile them with our shared primary environment.

When and how did you meet Frédéric Bénéton and the Bathysmed team?

Last winter, I read an article in the press about the Divhope and Divstress projects. I then decided to meet Vincent Meurice at the diving expo in January 2019 to discuss our practices. I was thrilled to realize that I wouldn’t be working alone anymore and that I could enhance my skills. The contact was excellent, and they told me about the very first Bathysmed instructor training organized in Conflans, Yvelines, in March 2019. It was during this training that I met Frédéric Bénéton. During the introductory presentations, I mentioned the “Children of the Moon” and our project that had been ongoing for three years with my club. I believe that with just one glance from Frédéric, the sparks of a new project were born. In just 5 months, we established the Bathysmed/FFESSM partnership with the Bellegarde club, and the program took on a whole new dimension.

What does Bathysmed bring to your practice?

I work extensively on understanding the brain’s functioning and the management of emotions, stress, fears, and anticipations. Bathysmed, in particular, shows us that these aspects can be channeled in a relatively simple and, most importantly, effective way over time. As a teacher for 20 years and a therapist for 5 years, I can leverage my experience in pedagogy and NLP to help patients overcome their fears and regain confidence. Bathysmed allows me to continue and enhance my training and skills by aligning with a protocol tested in randomized clinical trials conducted following the rules of medical studies. The results, measured among significant groups, scientifically confirm empirical observations I’ve made with specific cases of individuals I support. This convergence allows me to blend my passions with my daily work. It’s the utmost fulfillment, especially when realizing that our job is to make people’s eyes shine.

What are the needs and prospects for these XP children who have discovered scuba diving?

The needs are immense for these children who are very eager for tools to help them manage their daily lives. In the absence of specific treatments, there is a lot to be done to provide them with the maximum support and assistance. We will continue to offer them the benefits that scuba diving, especially Bathysmed, can bring by providing increasingly comprehensive and tailored courses to meet their specific needs. The family members are very pleased, as those who had the opportunity to dive as a family have been able to build new connections and discover the use of sophrology in their daily lives, particularly Noah, the daughter of Wafa Chaabi, who has been widely publicized. She has embraced scuba diving and is joining the Bellegarde Subaquatic Club to continue the adventure whenever possible! Perhaps suggesting that she pursue a BTY 2 level could be considered? The idea is in the early stages of development. She has already extensively used the techniques from the protocol, as she shared with me after the course: “You know, I’ve already used what you taught me because when everyone left, I felt like crying, so I thought of you and breathed as you told me, and my sadness disappeared…”

And next year, does everything start again with the Children of the Moon association?

I’ll see the same children, instructors, and anyone who wants to join this adventure again in a year. The instructors are very motivated, and our sponsors are always there to support us. It’s thanks to them that we can offer this window of freedom to all these young people. A huge thank you to everyone who supports and accompanies us, without whom nothing would be possible! This weekend of diving with the young ones, their families, instructors, and doctors was a unique and enriching experience, full of emotions. I enjoyed sharing these magical moments with these young people who live as if nothing is different, in a simplicity that makes us forget their uniqueness. The most emotional moment? When Ibrahim jumps into my arms saying, “Thank you, it was one of the most beautiful moments I’ve experienced, and I will remember you for the rest of my life!” It’s at that moment that I, too, take a deep and calm breath to manage my emotions. See you all in a year!

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