“At 24, I became deaf and we never knew the cause”

“I was in my final year of teaching English when I started having tinnitus, a ringing in my ears. It was becoming increasingly difficult for me to listen to the television and I had to turn up the volume.

I went to the ENT doctor and he told me that I only had a slight hearing loss and that I was not eligible for hearing aids. But deafness continued to progress. I returned shortly after and was already qualified for a hearing aid: my hearing loss was already moderate. It wasn’t long before I had to go back to the doctor. They changed my hearing aids because the loss was serious. This went on and on until even my hearing aids were no longer useful.

When I was 24, I lost my hearing in both ears. I only heard extremely loud noises, like those made by fire trucks, but nothing else. My only alternative to hearing again was a cochlear implant, but I couldn’t afford it.

I don’t remember how long this whole process took, but it must have been between one and two years at most. Today I am 33 years old and in my family there was no history, no one suffered from hearing loss. And the doctors were never able to find out why this happened to me. I was hospitalized for three days to undergo tests to exclude a series of diseases such as lupus, tumors, among others. I am healthy, but I have become deaf.

I didn’t want to be deaf. I knew nothing about the culture or the hearing impaired community. I had seen something about sign language, but I had no other knowledge. When I wore headphones, I covered them with my hair because I didn’t want them to see me, but The hearing loss happened so quickly that I had to adapt. Little by little, I lost my fear and shame of showing myself. My father’s support was essential. He encouraged me to study sign language and that’s when I approached the deaf community and discovered that deaf people have the same abilities as hearing people, but they don’t hear just not. Seeing them, I lost all my fear. I couldn’t stay stagnant, I had to move forward.

I finished my teaching studies with great difficulty. When everything happened, I still had to do the internship, and I had the thesis with me. Once again, thanks to my father’s help, the university made it easier for me to do the internship on site with adults, instead of doing it in a school. I graduated, but I could never find a job.

I spent exactly three years looking for a job and found nothing. I have always been honest on my CV: I said I was hard of hearing. I even sent him to a school for the deaf and nothing. I never got a response. I started looking for alternatives and in that search I found programming courses.

I first took a free course offered by Corfo, then I came to the bootcamp offered by Laboratoria, where many women are there to learn programming. It was an intense six month course in 2018 that was super difficult because at that point I was totally deaf, but I passed.

I was able to do this because I am a Christian and I go to church. There, since I couldn’t hear the sermons, they set up a system in which a microphone picks up the voice and, when connected to a USB audio interface that connects to the computer, transcribes the voices into text . I took this same system to the bootcamp and managed to study that way.

The last day takes place a Hackathon, which is like a programming evening where different challenges are organized for companies for 36 hours. My group won first place and I interviewed with three companies on site. I spent two months working on it until they called me from Entel, where I have been working as a web developer for five years.

In the office, there wasn’t a lot of space to carry the entire system I used for listening. I downloaded a program on my cell phone that transcribes voice to text, and that’s how I did it. I don’t know if deafness has affected my speech, I don’t realize it, but I think it has. I know we become half robotic when we talk.

In March 2018, I learned that cochlear implant coverage for adults had been approved by the Ricarte Soto law. . Before that, the GES only covered it for children under two years old or for people over 65 years old. Everyone had to pay for it individually and the device alone, not including the surgery, cost about 27 million pesos. I just didn’t have the money to do it, and neither did my family.

For me, the Ricarte Soto law was a miracle. I followed the process of the law carefully and when it came out, I wanted to have surgery the next day. Obviously there were no providers or information because it was recent, but in November of that year I entered the system and had surgery shortly after. I was the first person to undergo surgery at the Dávila Clinic with this advantage.

I had seen videos on YouTube where people cried with emotion the first time they heard them. I thought my experience would be like this, but it turned out to be quite the opposite. I thought I might not hear perfectly right away, but I thought I could converse loudly. I had high expectations. This was not the case.

After implantation, you have to wait a month for the wound to heal. When they turned on my implant, I only heard a faint whisper. I had to concentrate to listen. If I lost my concentration, I wouldn’t listen anymore. It was a disappointment. I was sad.

They explained to me that it was a slow process, because since I hadn’t heard in five years, they couldn’t give me full volume right away. The hearing nerve could be damaged. The process was slow: I had to do hearing rehabilitation with a speech therapist, exercises, among other things. Until I could hear properly, I’m not sure how much time passed, but it must have been between six months and a year.

At first, I experienced it with a lot of frustration. I wanted to listen to Altiro, especially at work. I wanted to participate in meetings or be able to participate in those light conversations that happen between colleagues, but I couldn’t. What helped me a lot was a little tool that I found that complements the implant: it’s a microphone that hangs around the neck of the other person, and in this way, the sound comes directly to me. Thanks to this, I can hear a teacher who is 10 meters away, which has helped me a lot at work. The distance to hear well with an implant is one meter, and two, it’s quite difficult for me.

In June of this year, my speech therapist wrote to me about going for my annual check-up. When I arrived, a representative of the Advance Bionics brand, the company that manufactured the implants that won the state tender, was waiting for me. There, they explained to me that a batch of devices implanted between 2016 and 2020 had defects. We didn’t know if mine had it or not, but they made me take it out, connected it to a tablet and two or three weeks later they gave the result to my doctor: My implant was one of those that failed.

Before all this happened, I suspected something. I felt like I was having a harder time understanding what I was hearing. I hear a lot of sounds, like noise or voices, and increasing the volume hasn’t fixed the problem. It was clearly something progressive. I remember a conversation I had with a colleague on the street a year after my operation. We were near the metro, it was noisy, but we could talk well. Today, I can no longer do that.

Since we had been in a pandemic for two years with little face-to-face contact, I thought I had lost my listening skills. I didn’t realize there was a problem with my device. Now I’m waiting for them to contact me again to have another operation. Everything has a warranty so it will be free, but after they confirmed the failure, I heard nothing more.

Despite the failure and the lack of contact, I don’t take things badly. I am forever grateful to the law that allowed me to afford the implant. Without her, I had no hope of hearing again. Hearing again was a miracle. Even if my device is faulty, I still listen and know it’s a problem that has a solution, so I don’t take it badly. I would like to never have another operation, but I am confident that everything will go well and that I will hear well again. .

The first surgical procedure took place under general anesthesia, but with only one day of hospitalization. On this occasion they gave me two weeks off work, but I spent the whole first month feeling very dizzy and taking medication. I was worried things wouldn’t go well with the reimplantation, but my doctor assured me it was working. I just hope the rehearing process is immediate and not a slow rehabilitation like the first time.