A New Ear in Year 25

Hello Year 26

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In January of 2000, a fearless six year old girl would get her first cochlear implant – oblivious to what all this would mean. This would be followed by many years of speech therapy, lost batteries, speakers and microphones in classrooms, listening fatigue and stubbornness. In May of 2019, a resilient 25 year old woman would get her second cochlear implant – a little more familiar with what all this would mean. This would be followed by cool gadgets, newfound efficiency, crisper sounds, lots of patience, boundless gratitude and joy.

For those who are wondering, “Sita, if you already have one, why did you get another one in the exact same place?” 

Take the iPhone 4.

You’ve got the home button and the wide 30 pin USB cable charger. You’ve had that for years while all your friends have the iPhone X, but you don’t care. It works and it does the job, right? But now you’ve broken that wide 30 pin USB cable charger and you look everywhere to buy a new one – except they don’t sell those cables anymore (okay, so maybe they still sell them on Amazon but for purposes of this story, let’s pretend they don’t!) It’s outdated, it’s old school, and no one uses them anymore but you do! So what do you do? You have to buy the most modern device, maybe the iPhone X.

What was internally in my cochlea was the 2000 version (iPhone 4) – old and outdated – and if my external device (the 30 pin USB cable charger) broke, there’s no longer one that is compatible with the internal device. Instead of waiting for it to break since it was reaching 20 years old, my family and I took proactive steps to get my surgery and rehab done this year. Therefore, sharing my story wouldn’t do justice if I didn’t let you in on the hard work and love my family has given me. 

You see, it is we that did this together because none of who I am would exist without their strength, support and resilience. It is my mum who drove me to speech therapy every week – an hour each way – for years and who fought for me to have the same rights as my hearing peers so I could be just like them. It is my dad who worked hard and educated himself over the years on all the technology behind these devices so I could have the best ones. It is my grandmother who patiently introduced me to music so I could hear all things beautiful. It is my sister who stood up for me time and time again so I could have friends too. It is these four who have raised me to live a life I’m so proud of.

There is no history of deafness on either side of my family, so we created our own road map and collectively learned ways for me to actively be a part of this world. When you are a little kid, you can’t see the future. But when you have a good family, they see the future for you and that couldn’t ring more true for mine.

So I came out on the other side with an iPhone X and patiently waited to get my new “charger”. I wear a hearing aid and a cochlear implant so during the two weeks I was healing from surgery, I wore only my hearing aid. It’s like pressing your ear against the wall so you can hear your favorite movie playing in the next room. You can hear it but it is soft and dull. When I wear my cochlear implant, it feels like someone has just opened the door and asked me to join them as the crisp voices of my favorite characters’ filled my ears.  

After two weeks of healing, I returned to UNC to get my cochlear implant programmed or as we call it in the audiology world, it was activation day! I was filled to the brim with excitement because I was ready to feel whole again. Slowly, the sound came which was a sign that the surgery was a success but it wasn’t the sound I loved for nearly 20 years so naturally, I was unhappy. It wasn’t a reaction you see on Facebook with happy tears because this was the second time and I was expecting it to feel like I would be returning home to my body. It felt empty and everyone sounded like a child or that they had just swallowed helium. Nonetheless, I was in the presence of intelligent audiologists and I reminded myself this was just the beginning of rehab – how do we make this sound the best it can possibly be?

It is important for you to know that I worked hard for this. I worked hard for years and years to achieve the level of hearing and speech I have today. I worked hard to read people’s lips in times of distress. I worked hard to look past the insulting comments because they do not know my story. While I had a few concerns about my surgery, I was more concerned about what rehab would look like especially given I had just moved to a new city where I was still building my community.

“Wow, you’re really quiet.”

“She’s just really shy.”

“You don’t speak!”

“She doesn’t say much, she just nods.”

During this rehabilitation period, my life didn’t stop. I returned to Boston and continued to build my life while taking monthly trips back to Chapel Hill for post-op follow-ups. These are things that were said to me when attempting to meet new people. I imagine my closest family and friends laughing as they’re reading this because if you really knew me, you would know that I am the farthest thing from quiet. I am outgoing, fiercely loving, enthusiastic, annoyingly talkative and deeply inquisitive. At times, I ramble with inconclusive thoughts, I speak too loud, I sing and dance with no rhythm and I have random bursts of energy.

I don’t know you yet but I want to! Part of my adjustment period is slowly increasing the volume of my cochlear implant without overwhelming my brain. The difficult part about meeting new people is not only do I have to build a relationship with their voice but I have to decipher it from the outside sounds, especially if we meet in a loud place where I cannot control the environment. Imagine if everyone and everything – from the person you are talking with to the blaring music to the noisy air conditioning – are all at the exact same high volume. That is what it is like for me so I struggle between pulling away and leaning in because I am a social being. All this to say, I am still adjusting my cochlear implant to match the life I have. 

Six months later, I am falling back in love with my new modern hearing. My family and friends sound like the way they should. My favorite songs now have a crystalline depth I never knew existed. My batteries last 60 hours, instead of 4 hours. I still want to increase the volume which is a good sign – indicating that my brain is adjusting well and saying, “more, more, more!” 

As the sun sets on my 25th year, I am reflecting on the last two and a half decades of my life and the gifts I’ve received along the way. You see, the world isn’t designed for you and me but the community we foster for ourselves makes it so special and easier to navigate. I’m reminded of this beautiful community when I think back to how I fainted in the car shortly after my surgery. I woke up in fear but I quickly learned that it was gift to wake up in the comfort of my sister’s arms, to wake up to my father calling my name, to wake up to a kind stranger resting a cool towel on my forehead, to wake up to flashing red lights rushing to give me medical attention on the side of the highway – to just wake up to love wrapped so tightly around me. All of this is not lost on me. I get goosebumps thinking about how lucky I am to have so much love in my life combined with an incredible access to healthcare in an immaculate facility, no less.

As someone who consistently practices gratitude, I have never been blind to what my family has done for me my whole life. I had people in my life who knew there was a world out there for me to hear and that I deserved to be a part of it. Therefore, they granted me both the financial and geographical access to the finest healthcare and surgeons, nurses and audiologists in the nation. So going through this experience as an adult made me reflect on how all of this is so much bigger than me which I hope is reflected in this blog post.

I leave you with this – my adversity is my greatest strength and I confidently believe it is what brings so much color to my life. Think about it, the Earth has been around for 4.53 billion years and I somehow got lucky enough to live in a time where a group of brilliant people created a tiny, yet mighty device that allowed me to move through the world with independence, courage and joy. Make no mistake, that is a gift. 

Year 26, I’m so excited to see what you are all about!

Con todo mi cariño,

Sita