I am hearing again!

[Gerda]

Hello Hearpeers

I am overwhelmed with happiness to be hearing again ...

But I will go to the beginning of my story...

I had NEVER had any issues with ears or hearing at all until

this past January (2016) when I went to my doctor with pressure in one ear and was told it was a viral ear infection. This virus proceeded to knock out ALL hearing in BOTH EARS within 3 weeks.

By February 14, I was completely deaf in both ears. Profoundly. Also my balance was affected and I am still quite dizzy. Tinnitus was enough to cause me much grief ...It continues but when the CI is on it is not too noticeable. My head feels full and heavy and dizzy affecting vision also .

 

I was fortunate to have the cochlear implant surgery on May 26 and activation on June 23 , so it has been a month now of hearing again. I have had 3 programming sessions with the audiologist and am working at improving the music aspect of it. Music had always been a large part of my life so it is a disappointment to hear mostly noise ...I had been taking cello lessons but have not had the confidence to resume and I am told that my singing is very off. I played the piano today trying to remember how the pieces used to sound.

Aside of the challenges of hearing I continue to feel unstable with vestibular disease which I am being treated for with physiotherapy.

It is a blessing to have my children and grandchildren in my city, London Ontario and especially since I was widowed 4 years ago and am on my own.

I am seriously pursuing a second implant in Toronto and have begun communications.

I wonder if anyone has any experiences/ comments /suggestions about the second implant or any of my challenges. 

It feels extremely lonely as people cannot see what I am dealing with. I have found it difficult to maintain some friendships which has been a source of sadness also. Other relationships have become stronger though.

Then recently just 2 weeks after my activation, My mother age 93 had a large stroke and died 11 days later, leaving an emptiness as she was a loving caring mom.  I was able to have one  good long visit with her again since activation...

On June 7, on my way to see her, I was rear ended at a red light not far from my home, which has added to my dizziness I believe. 

Still... I have found it thrilling to hear again and hope for improvements in the near future.

I am 66 years old, retired from teaching and was enjoying theatre, concerts and travel as well as family events.  I also hoped to find a new partner but I wonder if my new condition will frighten a possible partner.  I would love to meet people who are dealing with the same difficulties so this site offers possibilities for us. thank you for reading my story. I look forward to hearing from you.

 

 

 

[Kara of Canada]

Wow! Welcome to Hearpeers!! Your story is a story of inspiration. You have had much hardship but still keep going. I live in Ontario as well. North of Toronto. Best of luck with getting a second CI. It's difficult to do in Canada. They generally only do one for adults.

[Mary Beth]

Hello gracefully,

Thank you for sharing your story with us. You have been through quite a difficult time. I am sorry to hear about your mom's passing. My condolences.

My right CI was activated 16 months ago. It is doing great. It started to like music around the 3-4 month point.

My left CI was activated 8 months ago and has already caught up to my right CI. It is doing great as well. It liked music right off the bat.

Learning to listen with CIs is a process as our brain learns to interpret the new sound signals. Things will continue to improve over time.

Have faith in your journey. I am enjoying theater, live music shows, comedy shows, large family dinners, etc with my CIs. They have really been amazing.

Feel free to also join in on the FaceBoook group called

Med El Cochlear Implant Discussion Group

Just search for it and ask to join. There are many Med El users on that board too.

Best of luck to you,

Mary Beth

[Tony]

Hi Gracefully, Wow, I can't imagine how painful that has been to have so many dear things taken away from you so suddenly. You have no doubt faced an incredible challenge, yet I still sense perseverance and hope in your words.

 

I am 35 and happy in where my life has gone, but most of my 20's were a much darker time.I often felt lonely because of my hearing loss in the same way that you described. I understand exactly how you feel about relationships being difficult to maintain. It will unfortunately also be more difficult to develop new ones as well now. Cherish the ones that have gotten stronger and make sure those people know how much they mean to you. I have found that all you really need are a few close friends that have empathy and share your interests and hobbies. Someone that you can text a few times a day and share a funny thought with, and then be there for you when you need them or to get together once in a while. My best friend was one of those and more. An enormously generous, enthusiastic and empathetic person, who cared a lot about how my hearing loss had affected me. He died in his sleep from an undetected heart condition 2 years ago and the sense of loss is still very deep at times. When I was in the pre-op room awaiting my CI surgery 2 weeks ago I teared up thinking about him and how proud and happy he would have been for me... it probably won't be the last time I do that either. It was so hard adjusting to life with him gone, but has gotten better with time.

 

I have had a steady decline in my hearing since I was born but there have been points where I have lost significant and very noticeable amounts in a short period of time too. I remember when I could no longer play harmonica well, or more recently, not hear most keys on the piano (I am not very good though), or hear singer's voices or melodies and eventually only percussion and bass. I'm very afraid that I will never be able to enjoy my favorite music again. But I'm also looking forward to understanding my 22 month old daughter and speaking with her now that she is learning new words daily and hearing her laugh, and I will trade all the music in the world for that.

 

I have also felt to a degree, that in my world travels, my hearing loss has put a damper on each of the experiences. It was always so much harder understanding people with accents, and one of my favorite things about traveling is to learn about the people and culture. So despite having had amazing trips to Europe and other places, and I would go again and again, but there has always been a small feeling of disappointment upon return. One of the first things I want to do when I am able, is to learn Italian and Spanish.   

 

Finding a partner was tough for me and took many years, but it doesn't have to be as tough for you. I can't even begin to count the amount of dates without a spark I have gone on, or worse, the amount that did, only to fizzle a few days or weeks later, and to feel like it was something about my hearing loss that caused it. I eventually ignored my pride and signed for eHarmony. I was on it for about a year before meeting a woman who was raised to be so kind and so loving and able to see people for who they were inside. She is by far the best judge of character that I know. She was painfully shy with men and had a hard time finding a partner herself. We spent months writing back and forth over eHarmony before we even met. She is an English teacher, so naturally, she was very much into writing long letters, as was I. We've been together for 5 years, married for 3, and my life would not be complete without her. So my advice to you, is if you are ready, get on that eHarmony account right now! Find someone that enjoys spending hours of their day reading and writing long emails, because I am sure you do as well, and be open out your hearing loss but also about what makes you, you. Get to know them through writing first, not hearing, it's been used for centuries to ignite friendships and romances alike, and it still works!

 

I hope that you can find some comfort in these words and wish you all the best in overcoming your challenge and difficult times. Something tells me that you're gonna be ok.

[Kara of Canada]

I also have been a lonely person. I am married and have kids but there was a feeling of abandonment because I wasn't like everyone else. Now I can say I have made new friends in the CI world. It has changed my life. I have made new friends here on the forum as well as the Facebook group. I also have some new hoh or deaf friends because I have the confidence now to not feel the rejection or to sit back and tune everyone out. So jump in to aural rehab get that ear working and you soon will find that confidence come back to life. Best of luck!!

[Gerda]

Wow! Welcome to Hearpeers!! Your story is a story of inspiration. You have had much hardship but still keep going. I live in Ontario as well. North of Toronto. Best of luck with getting a second CI. It's difficult to do in Canada. They generally only do one for adults.

Hello Kara

Good to hear from you.

I have been in contact with Hear Life in Toronto and I seem to qualify probably as I am deaf in both ears. I am wondering if my insurance might cover some of the cost. We shall see. My audi said "the sooner the better":)

[Kara of Canada]

It may. I am current,y pressuring the hospital to cover the cost. I'm so young and have a long life ahead of me. They have agreed to consider me. My hospital will do 5-10 bilateral Implantations per year. So keep pressing on. (Sunnybrook)

[Gerda]

It may. I am current,y pressuring the hospital to cover the cost. I'm so young and have a long life ahead of me. They have agreed to consider me. My hospital will do 5-10 bilateral Implantations per year. So keep pressing on. (Sunnybrook)

Ok I will do that! I was implanted in London but was told that Hear Life was the place to go for a second one. Who would I want to speak to??? the idea of paying 45 K is quite staggering...

[Gerda]

Hi Gracefully, Wow, I can't imagine how painful that has been to have so many dear things taken away from you so suddenly. You have no doubt faced an incredible challenge, yet I still sense perseverance and hope in your words.

 

I am 35 and happy in where my life has gone, but most of my 20's were a much darker time.I often felt lonely because of my hearing loss in the same way that you described. I understand exactly how you feel about relationships being difficult to maintain. It will unfortunately also be more difficult to develop new ones as well now. Cherish the ones that have gotten stronger and make sure those people know how much they mean to you. I have found that all you really need are a few close friends that have empathy and share your interests and hobbies. Someone that you can text a few times a day and share a funny thought with, and then be there for you when you need them or to get together once in a while. My best friend was one of those and more. An enormously generous, enthusiastic and empathetic person, who cared a lot about how my hearing loss had affected me. He died in his sleep from an undetected heart condition 2 years ago and the sense of loss is still very deep at times. When I was in the pre-op room awaiting my CI surgery 2 weeks ago I teared up thinking about him and how proud and happy he would have been for me... it probably won't be the last time I do that either. It was so hard adjusting to life with him gone, but has gotten better with time.

 

I have had a steady decline in my hearing since I was born but there have been points where I have lost significant and very noticeable amounts in a short period of time too. I remember when I could no longer play harmonica well, or more recently, not hear most keys on the piano (I am not very good though), or hear singer's voices or melodies and eventually only percussion and bass. I'm very afraid that I will never be able to enjoy my favorite music again. But I'm also looking forward to understanding my 22 month old daughter and speaking with her now that she is learning new words daily and hearing her laugh, and I will trade all the music in the world for that.

 

I have also felt to a degree, that in my world travels, my hearing loss has put a damper on each of the experiences. It was always so much harder understanding people with accents, and one of my favorite things about traveling is to learn about the people and culture. So despite having had amazing trips to Europe and other places, and I would go again and again, but there has always been a small feeling of disappointment upon return. One of the first things I want to do when I am able, is to learn Italian and Spanish.   

 

Finding a partner was tough for me and took many years, but it doesn't have to be as tough for you. I can't even begin to count the amount of dates without a spark I have gone on, or worse, the amount that did, only to fizzle a few days or weeks later, and to feel like it was something about my hearing loss that caused it. I eventually ignored my pride and signed for eHarmony. I was on it for about a year before meeting a woman who was raised to be so kind and so loving and able to see people for who they were inside. She is by far the best judge of character that I know. She was painfully shy with men and had a hard time finding a partner herself. We spent months writing back and forth over eHarmony before we even met. She is an English teacher, so naturally, she was very much into writing long letters, as was I. We've been together for 5 years, married for 3, and my life would not be complete without her. So my advice to you, is if you are ready, get on that eHarmony account right now! Find someone that enjoys spending hours of their day reading and writing long emails, because I am sure you do as well, and be open out your hearing loss but also about what makes you, you. Get to know them through writing first, not hearing, it's been used for centuries to ignite friendships and romances alike, and it still works!

 

I hope that you can find some comfort in these words and wish you all the best in overcoming your challenge and difficult times. Something tells me that you're gonna be ok.

Hello Tony

It was very lovely hearing from you. You write in a wonderful empathetic way and your letter was very encouraging to me. Reading about your finding your lovely mate and having a little girl made me very happy for you all.

At my age I am quite happy with spending time with my grandchildren and now again to be hearing them. It was painful to not hear them talking to me as they were used to.

I know you have much joy ahead of you. I am amazed that you had your implant surgery only such a short time ago. I would love to hear how it goes for you. When I was activated I was over the moon with joy. I am now considering a second one so I can have 2 ears.

I am on Match.com now but am wondering if Harmony is more suited to me as you found it to be positive ... Might wait for Match to expire or just go for it. 

look forward to continuing our conversation Tony!

gerda

[Gerda]

Hello gracefully,

Thank you for sharing your story with us. You have been through quite a difficult time. I am sorry to hear about your mom's passing. My condolences.

My right CI was activated 16 months ago. It is doing great. It started to like music around the 3-4 month point.

My left CI was activated 8 months ago and has already caught up to my right CI. It is doing great as well. It liked music right off the bat.

Learning to listen with CIs is a process as our brain learns to interpret the new sound signals. Things will continue to improve over time.

Have faith in your journey. I am enjoying theater, live music shows, comedy shows, large family dinners, etc with my CIs. They have really been amazing.

Feel free to also join in on the FaceBoook group called

Med El Cochlear Implant Discussion Group

Just search for it and ask to join. There are many Med El users on that board too.

Best of luck to you,

Mary Beth

Hello Mary Beth

thank you for your encouragement and sharing. I am so happy to be here and hearing stories similar to mine. I did join the FB site and I see you there also.

I am impressed with your ideas and suggestions. thank you so much.

g

[Ivana Marinac]

   

Quite an interesting topic - thank you all for sharing your story, please stay online....

 

Second thing, please pursue your quest for second implant: it is not just 1+1 ear(s) it is more than that, like a puzzle. Binaural hearing adds different dimension, put our hearing into perspective by helping differentiate what we hear in noisy situation, gives reacher "hearing picture" and gives - sense of directionality. Yes, we need 2 ears to source the sound.

[Kara of Canada]

What I did was I wrote a letter to the hospital the person in charge of the cochlear implant program. His name is David Ship. I received word via my Audi that they had received my appeal and that they would consider me. So I wait now to see if they will have funding or if I'm a candidate on their long list. So as of now I am waiting to see what happens at their annual meeting to discuss who will be considered and what funding they will have for 2017. Keep up the good work. Two CIs are better than one!!

[Kay]

Hi Gracefully,

Thank you for sharing your story. You sure have had more than your share of trials in such a short time! I think you are overdue for some blessings. I can relate to your loneliness as I also feel that way at times. I know it is not possible for hearing people to understand what deaf really is. Until I lost mine I didn't know a lot either but I did try to accommodate those who I knew had struggle. My husband tries but he doesn't have a clue. I can tell by the way he reacts when I don't know what he says he doesn't get it.

From what others on this site have said,it seems like if you can get a second CI it would be great. I was just activated in July and my family and I are glad to be able to have an almost normal conversation. I doubt that a second implant will be in my future as I would need to be approved by medicare and I don't think they would. Anyway, I still have to deal with the one I just got. I wish you well on this journey one day at a time ano goodthings in your future. Peace

[Tony]

Hello Tony

It was very lovely hearing from you. You write in a wonderful empathetic way and your letter was very encouraging to me. Reading about your finding your lovely mate and having a little girl made me very happy for you all.

At my age I am quite happy with spending time with my grandchildren and now again to be hearing them. It was painful to not hear them talking to me as they were used to.

I know you have much joy ahead of you. I am amazed that you had your implant surgery only such a short time ago. I would love to hear how it goes for you. When I was activated I was over the moon with joy. I am now considering a second one so I can have 2 ears.

I am on Match.com now but am wondering if Harmony is more suited to me as you found it to be positive ... Might wait for Match to expire or just go for it. 

look forward to continuing our conversation Tony!

gerda

 

Hi Gerda, I have been meaning to respond to you all week! I'm glad to hear that you found encouragement in my writing, it was worth taking the time then. I hope you get that second implant and it helps you with music and singing. Are you able to understand speech without visual cues or lipreading? I am very happy with mine after only one week. I am having an adjustment tomorrow, but it is already helping me communicate better as long as I can lipread, and I am even understanding my daughter a few times a day, as opposed to a few times a week. There is still a long way to go, but I'm very optimistic. I am looking forward to tomorrow and I hope that we can get some more mid and low tones in.

I did use Match for a short time and did not like both the system it used for introductions and compatibility, or the matches I was getting. I feel eHarmony had much better quality of matches and had a great process for meeting and screening potential matches. I think you would find a better match on it, and I think you'd probably enjoy the matching process more as well.