I was diagnosed with this condition while searching for the cause of my deafness during my first cochlear implant. This helped explain why I started walking late. I received my first implant (right side) in 2002 and the second in 2008 (left side). Of course, no one in my family is deaf or deafblind. I started speaking in my first year of preschool when I was three. I have always followed a “mainstream” education thanks to various supports: LPC coders (Cued Speech Transcribers) who attended my classes and, during higher education, an AESH (school support assistant for students with disabilities in France). I did a lot of speech therapy until I was 15 and plenty of homework!

When I was younger, I didn’t realize I had a disability, although I was often asked to wear sunglasses. My vision problems began around early adolescence (11–12 years old), initially with night blindness. It didn’t have a major impact on my life because I was still able to get around despite the limitation. I didn’t fully realize I had a dual sensory impairment.

The symptoms worsened around the age of 18, when I started studying to become an object designer. I believe that sleepless nights, stress, and the lack of accommodations for my disability impacted my health. Today, as a recent graduate in object design, I’m taking advantage of every opportunity that comes my way! I would like to find a course in ceramic design or land my first job.

My vision changes every year; I can’t say how many degrees my visual field has, but I still have very good central vision. I have “spots” in my visual field that move. To give you an idea, while I’m writing this testimony on my computer, I can’t see my keyboard (I know it by heart!) or what’s happening outside my screen. I’m prohibited from driving, which is why I chose to live in a city with abundant public transport.

I often travel alone. I haven’t yet found the courage to use my cane. It waits patiently in the hallway. My implants help me enormously to avoid obstacles (cars, pedestrians in the street, seeing where the person talking to me is…). They allowed me to integrate into the hearing world. Sometimes LPC helps me understand (implants don’t solve everything!). Losing my vision is still something hard to accept.

Despite my hesitations, I was able to meet other deafblind individuals through a student job as a Community Manager at CRESAM in Poitiers (National Resource Center for Rare Diseases). This informed me about what to expect in my future, near or far. I hope that research will find solutions within a few years. In the meantime, I travel a lot, enjoy life with my loved ones, and sometimes live life at 100 miles per hour!