Brazilian creator of the platform called Crônicas da Surdez (Chronicles of Deafness), Paula Pfeifer has invited me to share my story on a blog post they released today.

Here’s the full story, translated to English:

Deafness and Art: Priscila’s Story

It all started when I was 17 years old. Until then, I had never noticed I had a hearing loss. That year the doctor told me that I had a cholesteatoma in my right ear. It had already pierced my eardrum and corroded part of the bones in my ear. Something went wrong in that surgery, no one knows for sure what, less than a 1% chance of happening, and I left the surgery with total hearing loss in my right ear. To me, that’s when my life with hearing loss began.

I was always very artistic, I got involved in everything that had to do with the arts: painting, sculpture, photography, cinema, theater, drawing and so on.

At the age of 20, I decided to go to the US to study film in California. Without realizing it, I began to make choices based on what I could or could not hear. For example, after many years I realized that I only had friends who like to speak loudly. You know the people whose voice is present to everyone when they enter a room? Those were my friends. People who spoke softly left me sweating cold. I had no advocacy nor information, no one had ever told me that I could benefit from a hearing aid, so I simply did the best I could.

When I was twenty-four, I discovered that the Cholesteatoma was invading my left ear, and with a new surgery I found out that it had already completely eroded all the bones in my left ear. When I removed it, everything sounded much lower. I remember crying a few days after my surgery, asking the hospital if I could borrow a hearing aid for the first time. I wanted to use until I had time to purchase my own because I had a wedding to go and I couldn’t communicate with anyone without the help of a hearing device.

I bought my first device for my left ear (there was nothing left to do for my left side which was too deaf for any assistance), but even with that, I began to be very afraid of putting myself in situations where I would have to communicate with several people the same time. I started to avoid those instances at any cost. I became more introspective and I questioned what career to follow. I had my first child, Lucas, when I was still finishing college and 3 years later, I had Jason.

Jason’s birth marked my life unexpectedly. He did not pass the auditory test when he was born, since he was born profoundly deaf. I saw myself on totally new world. We found no genetic link between his deafness and my hearing loss. Around the same time, my marriage collapsed. I became a single mother of two small boys and jobless.

I then started taking small designer jobs at home and participated in Jason’s preschool as a teacher’s aide. I wanted to learn everything I could to help him communicate with the world. Right away, we got a lot of information for him. With that I was educating myself about the deaf and hearing impaired world.

I learned sign language and the technology. I met other families with amazing stories. I made great friends. This was the only world Jason knew and he lived it with a natural approach. I was then discovering how much I had repressed myself. How many things I had avoided, how much could have been different if I had received support and advocacy in the same way that my son received: as soon as the hearing loss was detected.

It was years of not paying much attention to my career because I just did not have the time and the motivation for it. My children always came first. And how the years go by fast, right?

In 2015, Jason was 10 and Lucas, 13. I was living together with my boyfriend Goyo and his 12-year-old daughter Alexandra for 5 years. Jason was implanted 6 years ago with the cochlear implant and was doing great at school. I had changed the hearing aid and started using BAHAs (Bone Anchored Hearing Aids) and was adapting myself much better.

Art

But even with all of this, not knowing exactly why, I felt an apathy, and at the same time a feeling that there was something greater to be done in my life, but I did not know how to start and what it really was. I noticed how my art materials were filled with dust and cobwebs. Not knowing what to do, I decided to enroll in a crossfit class (Me! The artistic girl who ran away from physical education class in school!).

This class was making me stronger, with more energy, more excitement and a little light began to grow inside of me. I changed my diet and began to meditate. I started to listen to podcasts that inspired me and with that my desire to do my arts was growing, growing and growing. At the beginning of 2016, I told the family that I was going to be a professional artist. Just like that! Like someone who wakes up and decides their future!

And just as life has it, not even a month after I made that decision, several family problems began to appear and as if that was not enough, I was diagnosed with 5 symptomatic fibroids in the uterus. My world had collapsed! I felt like a victim, a total failure. I could never follow my dream of taking my artistic career.

At the age of 40, I sought therapy for the first time in my life. Between one session and another, I learned to see the “gifts” within my “problems” and how much I had ignored my own desires for so many years. I discovered that my fibroids came so that I finally took this attitude of doing an internal investigation and start for the first time in many years, to do what is best for me.

My luckyears

I did a meditation during one of my therapy sessions and received a message to “Trust and Let Go”. Without really knowing what this meant in my case, the therapist suggested that I open up to the idea of ​​taking it to journaling or to my art. That’s where My luckyears was truly born.

A mix of “lucky ears” and “Lucky years”, a way of uniting and honoring my story, my hearing loss and my art. This lead to a project that lasted 12 weeks, which I called “The Weekly Letting Go”: Every week I made an artwork from beginning to end without giving much relevance to the material used, the process itself or the result. The only rule was that I would have to finish completely within a week. It did not matter if I had liked the final work or not.

My art began to come out in many ways, the more I created, the more ideas I had. A whirlwind of creative energy came out of me. I began to share my work on social media and on my website and received several amazing feedbacks. I got an art studio for the first time in my life.

I still have a lot to grow. I dream of being able to encourage people to accept and assume who they are without fear. If we are in this world, it’s an enough sign that we are a special being. There is no other Priscila just like me, with my story, my dna, in the year that I live. Just as there is no other you. I find this incredible!

If you are in this world it is because you are special and unique and you have an experience and perspective that only you can offer, whatever it is, and it is up to you to be in tune with its essence. I still do not know for sure the scope of my work. Only time will tell me. But I know it’s bigger than me and because of that, I’ll never go back. Every step I take,  I learn new things, influence new people, make new connections. Life is much more about the rainbow than about the pot of gold at the end of it.

To read the original article, please click here (article in Portuguese only).