Self-Advocacy tips for social/work/school situations?

Try reading this post for some strategies.

Thank you very much cvkemp. Making that promise to myself will be hard sometimes, and very easy at other times. I am looking forward to wearing them around people and seeing if they notice a difference. I wish that my appointment was sooner than 11 days from now.

Do you mean by neuroadaptation that it will become more difficult to hear and understand when not wearing them than it currently is? I think I have experienced that temporarily in the past. Then I stopped using it and got adapted back.

As it is, I am misunderstanding people at work several times a day, just mistaking one word for another. When people talk to me from my bad side, in a noisy situation, I ignore them and they have to call me multiple times. I don’t hear whispers across the room, or soft knocks on the door. At home I don’t know if someone is taking a shower or not unless I go right up to the bathroom door. I used to be able to hear the shower from the living room.

Maybe most people know I am hard of hearing already.

I am a bit anxious about wearing hearing aids around my own parents, ironically. They both have good hearing and they are in their 70s. My grandpa was always very hard of hearing, which got worse over time, and as the years went by, he was nearly deaf. That seems to have skipped a generation. I definitely have some feelings about being the only one in the family who is hard of hearing right now, like I will be disappointing them. When I see them, it’s usually in a quiet setting and I don’t struggle. Maybe that doesn’t make sense, but it’s on my mind.

@snorkelfan said:

Do you mean by neuroadaptation that it will become more difficult to hear and understand when not wearing them than it currently is?

Actually, the opposite.
Some frequencies or specific sounds I could not hear, I can now hear with and without hearing aids.

A good example is crickets. I never heard a cricket once in my entire life. One evening, my wife mentioned how many there were that night. I put in my hearing aids and heard them quite well. Pure Joy! After some time, I can hear some crickets even without the hearing aids.

Birds? We have zillions in the yard. Once in a while I’d hear a bird. With the aids, and now without, I can hear lots of birds in the yard. Don’t see any more, but hear more.

That is neuroadaptation at work. Over time, more and more things I could only hear with hearing aids I can hear without. Thanks go to the audiology team and their expert skills at adjusting & re-adjusting as I adapt.

I very much hope that you can enjoy the same benefit!
Paul

@snorkelfan said:

I definitely have some feelings about being the only one in the family who is hard of hearing right now, like I will be disappointing them.

Please don’t be anxious about this. They’ll love you just as much!

If you wear eyeglasses, do you try to hide it?
If you break an arm, will you try to hide the cast?
If you cut your hand, do you try to hide the bandage?

Same goes for hearing devices. If you benefit from them, you benefit from them. Who cares if people see the hearing aids? Does that make you less of a human? My vote says it makes you more human- glitches and all!

Paul

Ha Paul, those sound like two really nice interactions!! I hope to have some like that, too. I am thinking that I will. I don’t need to hide anymore.

Mine are really tiny Eargo 8. They are IIC/CIC, depending on how they fit. I have the medium tip for the right side, and the small tip for the left side. At many angles, they are both totally invisible. But, at some other angles, you can see a little bit of metal and not just black plastic. That metal is used to connect when they are in the charging case.

I told my daughter about the aids tonight. She hadn’t noticed them. I asked her if she thought I made the right decision to wear hearing aids, and she said yes. We talked about how I ask her to repeat things a lot, and we agreed that it’s annoying. Her reaction was kind and supportive, even if she didn’t say much more about it. I think she is glad I am making an effort, and she will also make more of an effort to speak clearly now.

Looking forward to this week…Happy Good Hearing to you too!!!

You are where I was in 2023 with a new job front desk at a hospital in Boston days away. The audiologist rushed my appointments for evaluation and fitting. I had a day or two in the former job which was remote with head phones to try them out. Fast forward hospital setting. As you will learn what happens with hearing aids is you hear everything but it comes across as loud. The chirpping of a bird outside. The water streaming from a faucet. It was explained to me that hearing loss is so gradual by the time most of us surrender to doing something about it which was for me five years we are left believing the volume we hear is normal or close to normal easily fixed with those hearing aids. First adjustment is finding out yes that bird is actually chirpping as it always did but you’ve gotten used to the low volume. After a while that “loudness” evaporates. But my first day at the hospital the person next to me raising his voice to say “next” was unbearable. The bathroom doors closing with a clang was torture and I really had trouble hearing people coming up to the desk with the glass divider. I bought small note pads and left them at the counter and asked people to write their child’s name when an accent or mumbling was making it impossible for me to decipher. I read lips but it was the tail end of wearing masks plus most families wore masks long after the hospital dropped the necessity of wearing them. I bought a small gadget that my daughter could clip to her clothing in restaurants and in the car which helped some. And I left that job for another 1.5 years later where I could clip that gadget onto my window to pick up the voices of those checking in which helped. I also got bolder and asked my boss to clip it to her shirt when we had meetings one on one or in a group – in fact it took time for me to do this but eventually I did. I want to say all this time I did not have anything other than a flip phone. Around the time I started new job I was forced to get an IPHONE to accommodate a security level the company added to signing into their platform called OKTA. What an adjustment. I never wanted one. But I discovered after a while that adding the RESOUND app to my phone augmented the clairity that little microphone clipped to my front desk window and I hear everything! In fact when I left the desk I heard everything being said in the area of my desk and at the window. OMG! I felt powerful and “normal” again. Then I tried it with my daughter in the car and in restaurants. Using the microphone paired with the app on my phone I hear my child in the car very clearly as well as in restaurants. Sometimes I do need for them to clarify but it is not a constant theme. There are many features the IPHONE or whatever phone you choose other than a flip phone will offer you. I am slow picking up on them but you will be fine. Seize the day!

Luckily, the first time I tried a hearing aid was in 2007. If I had to start as a beginner now, it would be a lot harder. At that time, I only had loss on my right side, which was the same loss I had since I failed the kindergarten hearing screening. It was severe at 4000-6000, and profound at 8000 on one side only. The other side was normal. I loved the hearing aid and found it helped me a lot to understand soft spoken students in the back of the classroom when I was working. But, I would not keep up with it during the summer, and that began many years of on and off hearing aid use. I had an IIC custom made, and tried that for many months during the school year as well. I enjoyed hearing a bit better with it, and I would use it at work, but I never felt fully comfortable with it. During COVID, I didn’t wear a hearing aid at all. No need to, working from home, and with one good ear, I could get what I needed from there, for the most part.

Now, over. the past few years, the loss from childhood has grown, and more frequencies are affected. Now 6000-8000 is at profound, and I also have some mild to severe loss. What has really made things different for me though is actually my ear that used to be normal. Now I have a mild high frequency loss on the better hearing side, which means sometimes I am not hearing sounds at all, on either side, especially k, s, th, t, f, p, h, to name a few. I have also been not hearing the “B” sound and misunderstanding a lot that way.

So, with my better ear, I am able to aid it well enough to get it back to giving me all the sounds I need to understand speech. And the worse ear doesn’t get back to normal that never was, but with an aid , I can get it back to how it was for most of my life, before my hearing loss increased.

Today, I adjusted the tips for them, and now have a large in the worse ear, and a medium in the better ear. I also turned down the volume in the better ear, because I am not used to wearing an aid there.

I love love love how I am hearing now. Music sounds so good to me. I am very thankful, because it was sounding flat to me lately. I know that this may not last forever, but right now, it is so wonderful. I love wearing my hearing aids. I have the app that goes with my iPhone that allows me to adjust, mute, change programs and volume, and fine tune. The aids are programmed to my audiogram, but i love being able to adjust them myself.

I know what you mean about feeling powerful and normal again. This is how I am feeling today. Without these hearing aids, I would feel tired, grumpy, and every conversation would take more energy just to pay attention and understand. I love being able to just talk freely.

When I first started with that one hearing aid, it was just like you described. The toilet flushing sounded so loud, it was scary. Now, it feels strange when I mute them.

Happy Hearing Raissa!!!

Sally

What a heroic child you grew from into so accomplished and wonderful adult When my hearing aids are out everything sounds as if I’m underwater. I find myself not wearing them on my days off because have little interaction with people on those days living alone. I have tintinitus but it does not bother me at all thank goodness. Sounds like I’m in a forest out outside on a summer night. I don’t notice it at all. I remember the first time it started to the minute. I was sitting on the floor doing something likely with my child and it just sprung into life. My hearing has been above average all my life I could hear so well it sometimes was annoying cause I heard so well and would be that person asking people in the next room to please lower their voices and turn down the television. My dad had excellent hearing so much so the Army assigned him to listen for the incoming planes loaded with supplies during WWII. He heard them long before anyone else then guided them to landing. The pilots who did that job treking over the Atlantic from home to the front lines of the war were women pilots. My father spoke of them with such admiration. They were flying unarmed in smaller craft than typical air force and the enemy was looking for them. He told me one story about how a pilot he was guiding yelled, “Get that F@@$ing light out of my face! You’re blinding me” He loved they were so blunt and direct. Must have been a wonderful thing a collaboration of sorts. Then when he got older he lost his hearing. It was difficult for him because he was a music aficionado who knew so much about music from opera to jazz and everything in between. He still listened to his music, however. He liked making tapes for friends and family with selections he wanted to share and we all benefitted from it. Growing up there was music in every room and piped into our bedrooms. He set up so we could turn off the connection. Memories. I guess my hearing loss is inherited. It could be worse. But, people are so ignorant. My favorite is when on the phone if I ask someone who literally is not coming across well mumbling television in the background and even talking to other people on the phone, or driving and talking to the people in the car; respond to my polite and articulate request they spell their name or repeat their name – receiving the response, “ARE YOU DEAF!!?” There is ignorance and there is cruelty as well. We have each other thanks to advances in technology.

Raissa I remember hearing so well that I could hear the if the TV was turned on or not, even if the volume was off. It gave off a very high pitched and quiet noise when it was turned on. I’m not sure if TVs still do that or not. When my aids are off now, everything sounds like I put my fingers in my ears. I can still hear a lot, but it’s muffled and takes more effort to understand. Some of the far away sounds, and percussion and brightness of music are gone too.

I am sitting here home alone right now and I still have them in. They help with balance even if there is nothing to hear in particular. When I don’t have them in, I can start to feel nauseous. I am really getting fully adjusted to these. I gave my daughter’s friends a ride home this afternoon, and I talked with both of them the whole way. They were in the back seat, and one of them was soft-spoken soprano. I didn’t ask either one of them to repeat even one time. I am so happy with these. I readjusted them to give me even more help, because I do need it. I think my audiogram doesn’t show reality in some ways. When I was doing the test, I would click the button if I heard any tiny drop of sound, no matter how faint. But in real life, I would not have heard those sounds. So from now on, if it is that hard to hear it, I am not clicking for it.

When I gave them a ride home, I also wore my hair up. I love how they help me, so I should be proud of them. If I hide them, I am telling others that it’s something to be ashamed of. They are a part of me now, just like my earrings and my makeup. I will not use my hair to hide them anymore. If they happened to be hidden, fine. If not, fine also.

If someone is going to be rude, that is their problem. I had a student say that “Are you deaf?” to me..and it just lets me know that I had a problem back then. That was a few years ago. Today at work, it was still hard to hear some conversations around me. After work, I redid the “sound check” and adjusted the settings more, and now I feel more confident that tomorrow will be an easier listening day. The more I adjust them, the more natural my own voice sounds, too.

The technology is truly amazing. I am becoming totally dependent on it. If these heard aids were broken, I think I would either have to call in sick to work, or tell everyone that my hearing aids are broken and I can’t hear well. But luckily, they are working fine now.

My parents also had music playing all day growing up. I would fall asleep to jazz on the radio every night.

My grandpa was deaf before he passed. He would watch TV with captions and volume off. His hearing aids never worked well, but that was before the digital age. He was hard of hearing as long as I can remember. He was a butcher and had his own shop…I imagine he must have been hearing pretty well when he was younger in order to talk with all the customers and employees. He had almost no technology to help him as his hearing got worse, and didn’t try a hearing aid until he was already severely hearing impaired. It won’t be like that for us!!

I very enjoyed reading what Raissa & Sally wrote above about music at home!

My father was accomplished on all stringed instruments and woodwinds. A very old violin was handed to him by a Nun when the sisters took he & his mother to a boat at night to escape the Nazis. (They were undergound workers & were found out. The nuns got my grandfather out a couple of years earlier when he was discovered.)

My dad loved his violin and would play it whenever he was in town. (Worked for the U.S. government in communist Russia and East Germany when I grew up, but we knew nothing of it.)

My dad also had music on at home all day the seldom days every few months that he was at home. Most days were classical. Arturo Toscanini was his favorite conductor. Always played on the Hi-Fi that he designed & built of bits & pieces of scrapped televisions & radios mostly.

Saturday chore day, he’d play opera. I dreaded Saturday- not so much because of the cleaning, but oh that opera!

Most Saturdays he was in Europe. My mother would play her much loved jazz on Saturday cleaning day. During the week, we didn’t see her because she worked two jobs, so my brothers and I would play our little Motown 45’s. (Being from Detroit and all…)

Isn’t hearing wonderful?

Paul
PS: Once Ray Charles, who was already blind at the time, said that the worst thing he could imagine was to become deaf.