Touching and sincere interview with our colleague Dominique, who was struck by an extremely rare disease and who, by dint of tenacity and the support of his loved ones, was able to overcome the constraints imposed by his disability.
The interview takes place remotely but after reading the answers to the questions asked, you don't need to see Dominique to feel his emotion and determination through his words.
Dominique, it's your turn.
My name is Dominique Loparco. I am single and 43 years old. My roots are Italian but I was born in Morges.
St-Prex is my favorite place. I am a true child of this wonderful village where I have lived almost forever!
My favorite hobbies? Hiking, the mountains, nature, cycling, my garden and the pleasures of the table with a soft spot for good wines.
You want to share your story. What for?
Because I want to help people who are going through the same difficulties as me. Because it's possible to make a successful career change! That's the message I want to convey.
Also, you can never succeed alone. I have been able to count on the understanding and generosity of people who are dear to me. He won't want me to quote him, but my boss, my friend, Jérémie, is one of those people.
It's my way of saying thank you and helping others. The AI also supported me in my efforts. Without the empathy and understanding of my employers, past and present, and without the help of AI, my motivation would not have been enough.
What happened? What was the disease that turned everything upside down?
Almost overnight, when I was 33 years old, I started to have hearing problems. After analysis, it was determined to be Cogan's disease.
It's very rare, for a lot of ENT patients I was the first case.
It is a syndrome that attacks hearing, but not only. It also affects my eyes and my balance. It is a degenerative autoimmune disease. It's a daily struggle...
How much has it impacted your health? What are the solutions?
I understand the question. It's normal, our instinct is to calculate, to turn to statistics and to aim for a positive outcome, a treatment that will solve the problem.
But there's nothing we can do. Today, at least. There is no miracle cure. Believe me, I spent a lot of time with specialists and at the CHUV. Maybe one day, but now, as I speak to you, it's about facing and fighting.
The effects are manifold. Being an inflammatory disease that causes non-syphilitic interstitial keratitis, I experienced severe vertigo. My inner ear was affected, and I had to see a specialist physiotherapist as I could no longer walk straight.
In addition, I have hearing loss that quickly progresses to deafness.
At first, I suffered from nausea and even vomiting.
For 10 years now, I have also had to deal with tinnitus that resonates 24 hours a day and ataxia.
All of this is quite similar to the symptoms of Meniere's disease.
Keratitis may improve with corticosteroid treatment. I'm working on it.
On the other hand, I lost the right ear (implant) and the left one is at maximum 10% of its capacity.
The work is therefore that of the available treatments, of taking the necessary initiatives to improve one's quality of life and of working to retrain in order to remain an active member of professional life and to take pleasure in it. It's not easy, but it's possible!
Thank you for sharing Dominique. You were talking about staying active and participating in a collective project through work. So this was the case before the announcement? What was your reality before? How did you experience the transition? What about your loved ones?
I was an insurance advisor, and the impact was considerable!
It happened from one day to the next... It's like I've had my wings clipped!
You know, I'm a smiling person who loves people and human contact! I'm very sociable, so it was hard... It took many years to digest this, grieve and learn to live differently...
It's an invisible disability and people (my loved ones, my colleagues...) forgot that I couldn't hear. We are perceived as "normal" but in fact we are not...
This has caused enormous difficulties in my professional and private life!
Socially it was very difficult... I often felt sad and excluded!
Imagine for a moment being in full possession of your means and becoming hard of hearing, losing your senses, little by little. I was angry because it's frustrating knowing that there's nothing you can do...
I've tried everything. At the medical level as well as with alternative medicine. Nothing worked.
My loved ones suffered too! Seeing my evolution has been very hard for them to bear. They adapted and did their best!
They try to take my situation into account. For example, they always ask me where I want to sit. It is important to know that the moment at the table is daunting, especially in cafes and restaurants. The noise is hellish because hearing aids amplify sounds.
You were talking about your professional life as an insurance advisor. What was your employer's reaction?
My employer at the time was very understanding and supportive during work and during my short and long absences.
I used to work in customer consulting; A space where you have to listen. As you can imagine, a professional must listen to the needs of his interlocutor, and I was simply no longer able to do so.
Phone calls and interviews were becoming too complicated.
I remember my last appointment. The room had a high ceiling and it resonated. Plus, it was in English. I had a hard time understanding my client. Luckily, I knew him, and he showed me a lot of empathy...
When I left his office, I started sobbing out of helplessness.
Given the situation, I had to stop. My employer was no longer able to keep me. Fortunately, the AI intervened quickly.
What does their intervention involve?
As a result of my disability, they quickly took care of the purchase of my hearing aid. As my hearing deteriorated, other devices were purchased. The IV systematically covered the costs incurred.
The same applies to the costs related to my cochlear implant surgeries.
At the professional level, they allowed me to retrain by supporting me with training. I was interested in marketing and wanted to learn.
So I went back to school!
With the help of AI, I was able to get microphones that I could give to teachers and students and thus follow the lessons.
It was tiring to listen, concentrate, pay attention and take notes at the same time but fortunately, the live transcription by the RTS TXT team saved me!
Transcribing saved me energy because I could read, and it allowed me to take less detailed personal notes.
Other investments taken care of are instruments such as microphones and my glasses.
So the IA helped materially. It's appreciable indeed.
Yes, but they also followed me to my next employer. I was able to work in marketing for Purina from Nestlé to La Tour-de-Peilz. The IA held meetings with my employer to take the temperature and assess the progress of my work.
My counsellor has always been there. She has been very supportive of me in the context of my career change. I am very grateful.
And then, the Milenia adventure began!
How did this opportunity come about?
Thanks to Jérémie Monney, the company's CEO. A long-time friend, we talked and he was looking for reinforcements for his team because the company was growing.
He's the one who gave me this chance! I can't tell you how grateful I am to him.
The fact that I work in a team, surrounded by caring people, does me a world of good. The fact that I also bring my professional value to the company makes me particularly proud. We end up talking about pretty simple things in each other's lives and yet, because of my disability, it makes all the difference.
What is your role within the company?
I'm a junior digital marketer. By talking with Jeremy and the AI, I was able to adapt my hours to work part-time, in the mornings.
Thanks to my hearing aids and various work instruments (AVA and microphones ), I am able to do my job properly.
Before I arrived, Jeremy informed the whole team about my situation and how to communicate with me. Talk to me face-to-face, articulating and with the right voice.
I feel lucky and privileged at Milenia's!
It's a pleasure to share my daily life with this wonderful team!
They welcomed me as one of their own and integrated me very quickly. They are patient and smiling, which is precious to me.
Milenia has also bought AVA which is an application that can be had on the phone and computer and provides deaf or hard of hearing people with a live subtitling solution for all situations such as meetings, videoconferences...
We also have a loudspeaker for conferences and I have positioned myself in a strategic place in the offices; which helps me to anticipate moments of contact.
What is your message to people in your situation? They must recognise themselves in some of the difficulties mentioned, but what are the opportunities to be seized, what is the message you want to convey?
First of all, I would say that I am available if they want to chat with me. They can get my email address on Milenia's website.
Personally, I like to interact with the hearing-impaired community in order to share the experiences of our everyday lives.
Plus, we're always learning tricks from each other.
Then, I would advise, whatever your disability, to get information from the various associations. This is important because they can provide support and solutions.
You should also contact the IV and your advisor. They listen to you and it's important to express how you feel!
A word of advice for hearing people. I suggest that you put on the hearing aid of someone you know who is hard of hearing. You will have a better understanding of some of the effects.
Finally, I really want to raise awareness because behind our smile... There are a multitude of difficulties that we don't see because it's a disability that is invisible. The empathy, support and generosity that I have been fortunate enough to receive are essential.
Retraining is possible. With the right efforts, the right technology and a supportive environment, it is possible to flourish and (re)find your place and your added value!
