Life with Cochlear Implant
Here the questionnaire I received from MedEl (my implant provider) at 6 months of Milestone to know about my hearing progress. Just trying to cover it as story to help somone to know how it looks like to live with cochlear implant in early days.
- Tell us about your hearing journey — when did you start using a hearing implant and why?
I was normal hearing person till age 22. At age 23 (2008), it started with humming sound in my left ear which I later found called as tinnitus. Within 6 months I had to wear hearing aid to cover the loss.
One year later the whole thing started again but in right ear and I ended up wearing hearing aid on both ears. It helped me till 2015. But in all these years my hearing gradually declined and I had to upgrade my hearing aid in 2018/2019 in both ear. But I hardly enjoyed my new aids longer.
After some 6 months with new aids my hearing went down to the point where the normal communication became a challenge and I started lip reading. I did know about cochlear implant back then but a quick study and reading articles around it made be worried about its result and complexity involved. So I haven’t give much thought about it. But when the fear of living deaf exceeds the fear of having cochlear implant, I seriously consider it and started meeting people to know it better. This is in late 2022.
2. What worries and fears did you have before getting a hearing implant for your loved one? What helped you to cope with these insecurities?
The biggest worry I had was around all the risks mentioned here. And if you visit this page, you see its from FDA govt site and the list of risks far exceed the list of benefits. The major concern was, apart from hearing issues my life was all good and reading about those risk I started to afraid that I might make it worse if things go wrong.
So obviously my left and right brain was constantly in debate till the activation.
Now, The things helped me to cope the insecurities:
1. Chat with people who already using it. And get their reviews.
2. Chat with Doctor on the complexities and clearing the doubts.
3. Educating myself and family as much as I can on the outcome. Mostly positive sides.
4. Strong will power to live again with hearing.
5. Support from family (Really crucial)
6. Positive attitude and hope.
One more thing I want to add which probably is most underrated worry, that is a worry to choose a right implant for you. Even though the list is small, choosing the cochlear implant out of the 3 main brands was a big struggle. Meeting with executives and learning all features and all was not less than a nightmare.
3. What were the personal challenges on the hearing journey? How did you deal with them? What helped you overcome barriers and difficulties?
There were lot of challenges, let me start from the beginning.
1. First challenge I faced was to lose my Job due to hearing loss or left behind in the career. I have just started a new Job and was onsite (Japan) at client place when my hearing started degrading. It forced me to move back to India and even though I was still working with same employer, the fear to lose it was always there. I had to put a lot of effort to made them realise that I too can be useful with my hearing loss. And I definitely left behind in career due to it.
2. Next challenge comes when I got married. Even though I married to someone who have been there in whole journey and supported me, the life becomes hard with the extra responsibilities and managing the married life. But after few years, we have sorted it together.
3. Next challenge was when we are blessed with a baby boy. The same story with more responsibilities and hearing loss made me disabled to some extent. But again due to support of my wife and family we have sorted that out too.
4. Around 8 years living with hearing aid, one thing I realised that I have to take responsibility to change it as no one else can do it. I started with the pain points with my job. I knew working in a Job that requires a lot of communication will never work for me. It’s always stressful to go to work with little to no hearing. So I tried to find people/clients who can help me get out of the day Job and started freelancing in which very less verbal communication required.
5. One year in freelancing and putting a lot of effort to make it work helped me and I partnered with an old friend to start a small software development shop with him in 2017. Back then my hearing was good enough for one to one communication. But it hasn’t last longer. Within a couple of years in 2019, my hearing went down to the stage where one to one communication becomes a challenge.
6. I lived like that for next 3 years, almost deaf. I was solving a lot of business problems for clients in all these years and everything is going good except my social life. I had almost convinced myself that this is the reality and I had to live it like this forever. But a part of my mind just can’t accept it and constantly pushing me to find the solution. And finally I am glad it helped me to go for cochlear implant in the end.
4. What is your strongest memory related to music/sound before/after your hearing implant surgery?
I still remember I hear the music when I upgraded my hearing aid back in 2019 with all sort of Bluetooth technologies. But within a week I had a hearing attack which dropped my hearing to the point the music became irritating and I stopped listening it.
Last few sounds I was able to hear with hearing aid was a sound of a Truck passing by or a bullet passing by. I was able to hear sounds when someone speak louder but there was no speech understanding. I had to lip read to understand what the person is talking about.
I started recognising the speech only after my cochlear implant. And to my surprise within just few days I was able to carry out the normal conversation with my family. After a week I tried the music and my mind just blown away to hear the music which I loved and didn’t hear since long time. I have cried hard on that day hearing all those songs. The music perception kept improving as I keep hearing music. Within just couple of weeks after started music, I was able to enjoy the completely new songs. I ended up buying Spotify subscription as I real hate those ads to interrupt me while I was enjoying the music. Now I am hearing all sorts of podcasts and music without any issue. For better quality I either move to a quit place or switch processor sound off using Audio link so I can only hear the music. Its feel so good I just can’t describe in words.
5. What does music mean to you on a personal level?
It means nothing before the implant. I have forgotten music all together. And never hoped to listen it again. Even I haven’t mentioned it when doctor asked me my expectation before cochlear implant. I told him, my only expectation was to hear my loved ones again.
After the implant, music becomes a part of a life, I hear music at least an hour every day after my activation without fail.
6. What role did music play in your decision to seek a hearing loss solution?
None, as I said I wasn’t much into it and convinced myself that I can live without it.
7. How has your hearing device impacted your day-to-day life?
My life turned down side up. It’s nothing less than a miracle for me. Each areas of my life improved after activation from professional to personal to social. I talked to lot of people (personally and over audio/video calls) after activation from my family to friends to my employees and strangers too. Its fascinating me to see how much I was missing in life and how the implant helped me to achieve all this back. I am always in debt to people who helped me to bring my old self back.
8. What was the biggest challenge in your rehabilitation? What role did music play in this process? Which other tools or tips contributed to your rehabilitation?
I didn’t do much rehab. The only rehab I did was at home by downloading few material as my audiologist suggested and get my family to check how I do with it. They found initially I was not recognising similar sounded words properly but with practice I was able to in not much time.
Here is the list of recommendations
1. Wear your implant whole day even if it hurts a little bit and makes you anxious.
2. Expose yourself to all kind of sounds and hear it without judging it. It will improve over time.
3. I do recommend Meludia which I used in early days after activation to improve my music perception.
4. Don’t afraid to talk to people fearing you might not get them. Talk to different people as much as you can.
5. Your mind needs a lot of practice to hear long forgotten sounds. If you hear new sounds, ask people around you where this sounds coming from, your mind needs to know and map it with the old memory.
9. Can you think of an especially memorable moment from your hearing journey? Was there a special moment connected to the appreciation of music?
There are a lot of WOW moments I have experienced in past 5 months after activation.
1. First wow moment comes at the first second of activation, I don’t know about other processor but when my audiologist switched my implant there was some initial booting sound I heard, kind of a quick sequence of each frequency playing low to high and I almost had goosebumps, Right then and there. Haven’t heard all those frequencies together in my whole life.
2. Those moments of hearing long forgotten voices of loved ones. At first, they sounded robotic but all those moments when it all sounded familiar after few days are all Wow moments. Heard my niece calling me out from behind about 100 feet and I heard it. Just Wow.
3. Heard the clock ticking at night while I was reading in quite first time since 15 years.
4. Hearing Nature’s sounds, like Sound of rain and thunder, sound of birds and insects, sounds of wind are all wow moments. It’s like my mind is saying thanks to fit this device in.
5. Heard an unknown sound at night, asked my spouse and came to know it’s a sound of a train honking from about a mile away on a rail track which I long forgotten.
6. Showing a direction to lost strangers on road. I used to say “no idea” to strangers when asked for direction while I am on walk. It was a wow moment when I heard a stranger asking for a direction about 10 feet away from a car and I heard it and helped him. 🙂
7. Listening to long forgotten music, feel like I need to catch up on whole decade of music. Not a single day pass when I haven’t heard music since activation.
8. Watching TV with family and laughing along with them. Just Wow. Started watching movies which I have just seen and not heard.
I used to keep a gratitude journal and read it time to time. But it feels like I no longer need it. I just need to put my processor on and hear the sound it offers.
10. What is your favourite sound? *
Sound is something unique for me. I don’t judge or compare one to another. But if you insist, I will pick my kid’s voice and the voices of all toddlers in my neighbourhood. I just love hearing them, probably because I haven’t heard my own kid well when he was toddler.
11. What are your hopes, dreams, and wishes for your personal future? *
The only hope and dream I have at the moment is to live a life with all these wonderful sounds around me. And I wish and pray for all those who are having the implant can enjoy the sounds again.
12. Can you imagine your life without a hearing implant?
I do actually, I have been imagining a life without hearing quite a few years before I decided to go for implant. In fact all those imagination somehow helped me to go for it. The life without hearing is tough, really tough. And I do know now that life without implant can be a lot tougher.
Thanks for Reading.
