Activation to today... things change so much!

[Mary Beth]

What did things sound like at your activation?

How are things sounding now?

What advice would you give someone who is feeling anxious about activation day?

[Mary Beth]

My right side started out hearing static & beeps!  My left side started out hearing quiet marimba!

Things sound amazing now on both sides!  And music is spectacular!

My advice is to think of activation day as your starting line.  Things will get so much better.

[Mary Beth]

I’m going to tag some people to start.  Please tag others too!

@Jewel

@Mary Featherston

@Kylie

@Megan L.

@Dave in Pittsburgh

@Joan

@Jdashiell

@Valentin

@Tracey_66

@Nikki

@Watersail

[Jewel]

When I was activated the sounds were like the Twilight Zone. It sounded like I was surrounded by Martians. I was hearing sounds but couldn't make any sense out of them. It was very disappointing. 

But things improved tremendously within a few days. At activation the audi had to use Ava app to communicate with me. At my next appointment with her a week later I could understand everything she was saying with just my CI. It was amazing! 

Now everything sounds natural, including music. I am very pleased. 

My advice to others going into activation day is to keep expectations low and try not to get anxious. As long as you hear something on activation that's a good sign. Things will most likely get better. Just be patient. 

[Dave in Pittsburgh]

My activation took place 2 weeks before Thanksgiving.We went to my wife sister house for our annual Thanksgiving dinner normally it’s just the four of us but this year their daughters and boyfriends attended for the first time I heard many voices,sounds of dishes ,glasses,silverware also it was very confusing to understand some noises and a few weeks everything was falling in place.

Two years later I have my second operation to go bilateral noise and sound reaction was minimal about 3 weeks after the activation I was on the second floor I didn’t close the refrigerator door and there an alarm that sounds I heard it my wife couldn’t believe it. I went to the library I couldn’t believe how many low tones voices I could hear even though it was whisper voices I couldn’t make out what was being said I could still hear more the human ear.

I strongly recommend going bilateral if you are qualified its almost better then natural hearing,for a few weeks of discomfort one may have,you will have a lifetime of hearing.

 

[Hila]

Hello dear CI recipient awaiting activation, 

If you're anything like me,  you may have been in hearing world for a while and then lost hearing to the point any communication became a hurdle and music faded away and impossible to enjoy any longer.   CI is your only choice.   You don't know what to expect but you need this to work!  Maybe you've been in complete silence since your surgery and every day has been a struggle.  Cheer up!  Very soon you will transition from world of silence  to world of many different sounds.  Your world will be full of discoveries,  and things will keep dynamic for a while.  Many times you might find yourself amazed of the things coming through your processor, small things that are part of every day life such as electrical appliances beeps, alarms, timers etc will become amazing little gifts. You may find out that your washing machine is actually playing a tune for you every time you start it.  You'll ask yourself why?!

On activation day I was glad to hear different frequencies,  some high frequencies I haven't heard for years, even decades,  are now possible to hear!  Voices sound strange at first.  Mechanical.  Any sound was accompanied with dings and rings and bells.  Music sounded good! I would listen non stop. Difficult at first but after listening over and over it sounds better and better.  Hearing people without looking at them start becoming possible and then easier over time.  

You can expect to feel tired , very tired,  after a whole day of listening to new and old sounds.   Sometimes you may even need to rest but with time listening through CI will become second nature and you might even forget you're actually deaf. Sorry! Some ppl around you might forget as well.  Or will never notice.

Some days will be good, some days may be challenging.  Second activation was different than the first.  If it can be different within the same person I get it varies widely between people.  My main advice is please stay connected and seek support as needed.  Track your progress,  stay in touch with your CI center, your doctor and the community here or on other platform.   It may feel isolating not to hear well but we're all in this together.  Best of luck!

 

[Mary Beth]

@Nikki

I love your letter to future CI recipients!

[Megan L.]

Hmmm activation day....the day that was full of surprises! Men sounded like smurfs talking through a long tunnel and women had no voices just a ringing sound. I didn't even have a voice only ringing. I had to put my hand on my chest when I talked to feel the vibrations because I was ringing with every word I said 😂 I heard music right away but there were no voices. I tried to only play music I knew the lyrics to so I could try and find the words but that didn't happen until the next day. I had no idea how noisy the world was and how many beeps there were. WOW! The TV sounded terrible too - all noise, ringing, and static. It cleared up pretty quickly though probably because I forced myself to listen through the discomfort. 

Today 4 years later, everything sounds normal. Music sounds complete with high and low pitches as opposed to it being chopped off at the top with only low sounds. I hear beeps a good distance away and it still amazes me! Before I couldn't even hear them standing right next to it. I can hear and understand people in another room or without seeing their faces. Something I could never do before. I can also watch TV without captions if I need to....but I'm so used to captions so its a habit now plus mentally it is less effort!

My advice? Be realistic and work hard to rehab your ear. It also helps tremendously to keep a positive, optimistic, and hopeful attitude. My left ear had 0% discrimination and it had not understood words since I was probably 7 or 8 years old. Long time. But I believed it could work and I was ready to work hard  Also, be patient. Your brain is working overtime to adjust and figure out what it is hearing. Being consistent and challenging the ear will help too. If you can't figure out what you are hearing, ask your designated hearing person to help!! it will drive you nuts if you don't. Lastly, celebrate all the little detailed sounds you now hear!!!!

[Mary Beth]

I am really enjoying these posts!  

[Kylie]

I heard noises right away at activation. At first it was all beeps and crackles, like someone got the wrong cable connected. But over the first few hours and days it became familiar noises with an electronic crackle overlaid. Then more and more clear but still for a while like a MIDI file when I wanted mp3!  Nowadays it sounds pretty 'normal' in combination with my natural ear, but the CI by itself still like I am listening to the world through a microphone and speaker system, with an electronic quality but a really good one. 18 months in.

I think everyone here has covered the advice part very well!  Patience and practise.

[Watersail]

At activation, it was a mix of really, really high pitched beeps and pressure sensations. Mostly pressure. I couldn't make out speech at all. The pressure sensations was as if someone was pushing in on part of my brain, or in some frequency ranges, poking with an ice pick.

Over time, the beeps started to form speech, the pressure sensations gradually gave way to sound. The piano sounded like all the keys were out of order for a good long while. Some keys on the right side of the piano sounded like they should be on the left, and vice versa. There was no real order, it was all random. 

Speech understanding started to slowly form over the next couple of months. It was really, really high pitched. Imagine Minnie Mouse on helium times 10. I couldn't distinguish between voices. Later on, speech started to seem clearer, but it sounded like there were multiple voices in different frequency ranges all saying the same thing. A month later, there seemed to be a more clear voice among all the voices, but very distant in comparison. That distant voice became stronger and the multiple voices started fading away, about 6 months from activation.

I was able to go to a busy, loud restaurant and talk with someone and understand them in a couple months. When Coronavirus become more widespread in the US and work sent us home (to work from home), all the meetings went online. It was very, very mentally exhausting. But it got easier over time. It's still mentally exhausting, but I was able to understand the other people on the calls before the sign language interpreter interpreted them (I use VRS).

Back when we had in-person gatherings, I could tell a huge difference between my CI ear and the hearing aid ear when talking with people. It got to a point where the hearing aid feels like it was missing so much information when my CI battery died in the middle of a conversation.

I'm about 15 months from activation now. Sound is starting to spread out from being high pitched. It's also chaotic to my speech understanding since I was getting so used to to the high pitch speech. Now the lows are becoming prominent and burying the middle part of speech a bit. It's surely time for me to go in for another mapping.

It's a long, hard, road. It requires dedication, focus, and commitment to rehab. There'll be days that you feel like you took a step forward, only to find yourself two steps back later on. But it's been amazing. I'm hearing things I've never heard before. Like the "s" sounds, I can tell when people are pluralizing their words now! People on the bus listening to their music out loud (even though they have the volume down really low), the hiss of air brakes on the bus, screech of brakes, the oven beeps, running water in the other room, just to name a few. 

My road has been a bit longer than most people, but I know I'm making progress and that I'm making way to where I want to be. Your own road is unique, it may take longer, or not as long as other people. What matters is perseverance and constantly working on rehab.

[Mary Featherston]

Sorry to be late; a former employee of mine died last Tuesday and I've been unfocused.

I'd second what Nikki said.  Activation was the first indication that things were going to turn around.  I'd lost the ability to hear in phone meetings.  I didn't hear most of what was said in in-person meetings.  I was withdrawing and avoiding talking to people.

But on activation day I heard my audiologist speak.  It wasn't clear and I could barely hear, but I hear her.  My husband and I were both crying.  I have since learned that Kirsten doesn't in fact sound like Minnie Mouse; she has a very nice voice.  But that day it was beepy noises that could barely be understood as words.  I spent all my extra time doing rehab, and it slowly got better.  Three weeks after activation I had a meeting with two coworkers with only my CI, not my hearing aid.

It wasn't great, but it was functional.  These days?  These days it's great.

[Joan]

What a journey it has been going from a profound hearing loss to bilateral hearing with my CIs!  From not being able to distinguish male from female voices after my first CI activation to becoming bilateral and hearing and understanding nearly everything that is said to me (in surround sound!), it has been a process for which I could not be more grateful.

I agree with others that you should go into activation with low expectations and be thrilled when your expectations are exceeded, as they almost surely will be.  Successful hearing with your new CIs will require diligence in your hearing rehab and patience, patience, patience! But the rewards you will gain from your hard work will pay dividends beyond your imagination. Revel in all the sounds you will hear...some you’ve not heard in years, some you may not have heard ever. Enjoy them all! 
 

I have been implanted for 6-1/2 years and bilateral for 6, yet I am still amazed at the sounds I now can hear. I wear my processors virtually every waking hour and now truly forget I am deaf until I remove them at bedtime. I love being an active part of the hearing world!
 

Work hard, be kind to yourself, be patient with your progress...you’ll be so glad you did!