My Cochlear Implant - a journal

Oh shoots- You lucky. My HA in tbe old days- yikes.

Bummer about the chapters- maybe put a feeler if folks wants to set one closer to with day hours. Some of the chapters are switching times around- some at night- some in the daytime .

@bookysue Thanks for the reminder, I will check into that when we are able to come out of isolation.

@julie04 Sometimes when we go out to dinner with the couple we most often do that with, I forget my Connect Clip. The other husband has a booming voice and if the other wife and I are trying to talk it is impossible for me. That can be true even when I have remembered to bring my Connect Clip.
As I have mentioned, they are very supportive and understanding, but not everyone is. My sister feels terrible about my hearing loss but at one point when she and I were in the back seat of the car I asked her to wear the Connect Clip. She didn't want to!
JK

My hard of hearing family of origin is the most resistant to helping me hear! When we gather, the ones who are able do communicate, and I feel like I'm being ignored (I'm the oldest and the most hard of hearing). Wouldn't you think these are the people who would be most helpful. The opposite is true.

The time frame for HLAA Chapter meetings has a lot to do with the make up of the chapter. If the chapter is all older retired folks, they will choose to meet in the daytime. It's hard to involve working folks if the meetings are held then. Some chapters meet on Saturday morning. That's kind of a compromise, but lots of people want to be free on their weekends. 🙂 It's pretty much up to the founding committee when a chapter starts to decide which way to go. A chapter can be formed with a small number of people, but a goal should be to grow. Chapters are more than basic support groups. There are a few chapters that hold both evening and daytime meetings. Our chapter in Appleton Wisconsin meets in the evening. Attendance varies between 20 - 50 depending on the program to be presented or the social event we have twice a year. The chapter also has 2 subgroups; one that focuses on cochlear implants and the other that is basically an entry level support group where people can ask questions and share their experiences. That group meets in the afternoon. No one answer. Depends on how you start and how you grow. Regardless, it's well worth getting involved in chapter development if you want to learn how to live well with hearing loss. We learn more from one another than from the professionals in the field. Not a slam against them, but the reality is they are focused on a small piece of what we need and don't have time to answer questions they don't have answers to. We know what coping means. We know what being left out means. We know what helps and what doesn't. And, we have experienced similar situations that people who don't have hearing loss have difficulty understanding. That's what peer support/self help is about. Let HLAA know if you are interested in forming a chapter. There are people out there who are willing to help. They may not live in your geographical area, but they can sure communicate with you online. Who knows, there may be some national HLAA members in your area. They are everywhere. Be one!

@bobbiefriend That always is surprising, when people close to you just "don't get it". My husband was like that for a very long time but he is trying harder now. My daughter also has a hearing loss, completely unrelated to mine, but she is often not quite as understanding! I think that may be because her loss is more correctable than mine is, since a big part of mine now is understanding the words said.

@julieo4 Regarding the professionals, I have never yet seen an audiologist who has a hearing loss so they cannot completely understand. I think the more years they have been in practice the more they do understand what their patients are going through so that does help.
JK

Hi JK, First, thank you for your kind words, it means the world to me that my thoughts might help someone else in their hearing loss journey.
There are many drugs that transplant patients must take that are ototoxic. You can google your medications and see which ones are most toxic to your hearing, however... as a transplant patient, you likely must take these medications. To me, living with hearing loss is preferable to pushing up daisys!
Please, when this is over and it is safe, find a university or large speech and hearing program and ask them for an evaluation. Likely your audiologist isn’t qualified to do the test or make the call.
Cochlear recipients are entitled to 4 devices - from a large list - to help you live the richest life you wish. One of the devices I chose was a waterproof case for my implant. I can tether it to my hair and wear a headband to keep it in place while I swim or exercise in the water! You can buy other accessories but I am also a water person, so this was an important choice for me.
The last and most important thing I can say to you is do not be afraid to ask for what you need to help you hear in groups. Sheri Eberts has wonderful short articles on her blog of ways to ask, things to give folks so they understand more what life is like for you and tons of encouragement.
JK, You are going to move forward in your hearing journey. Be proactive and positive and breathe when things get so discouraging, depressing and frustrating.
Blessings,
Liz

You’re right, bookysue, Mayo CI sites are great. I couldn’t understand speech in music at all before, I couldn’t tell what piece the music was. I had no idea my favorite music was playing unless I could speech read someone to know. YIPES! I love music with my CI. I’ve gone back to singing and playing my ukulele, even. It is a super change. Hope your CI works out soon. Perhaps things will be easier after COVID. Take care. Liz

More on UPDATE. What a tragedy this Covid situation is... here I am, in an RV, living the life, just had a CI and can understand people speaking from 30’ away, loving communicating with friends and family on social linkups AND... I wanna go out and chat with everyone and that’s just not possible. I imagine that when this is over, I’ll be running up to people, hugging them and saying please talk to me, say anything, LOL. Stay safe, folks.

There is a book call Deaf Sense by David Losge- the book is a novel but the author was on dead on That I found out he has a loss. Hearing and not so hearing spouse. It is awesome . Really strange and I feel uncomfortable admitting this . But then I am not a people person . I have little patience for certain types hearing losses - I should be more patient but I have a really hard time understanding and hearing certain folks with certain sound .
And folks- now day; the last two weeks; Masks. Omg. Big part of my hearing is lip reading and I cannot hear the bank people etc- it is hard. I am trying to get set up for atm stuff and you supposed to call rather then the branch helping. Life is hard now.

They know since the last convention ( Rochester) . And I have spoken about it at other chapters meetings. You say the older ones want daytime- not true for my former chapter . Odd because 3 of us younger ones wanted daytime-
After Virus is over; I will try to set up a philly chapter in a church, ??? - and start from scratch.