Category Archives: lip reading

Funerals and Hearing Loss

My parents live 10 hours south of me. Before working full time I’d visit them every couple of months. Since working full time it turned into only a couple of times a year. I get along well with my parents, they turned into my friends also in my later 20’s and enjoyed visiting them very much.  I went to visit my parents in Arizona June 11th, helped them with some outside chores. It was a good visit, they seemed well, plugging along in their own way living life off the grid. I left on the 14th, that morning, hugging them both and getting the usual kiss from my dad.

When I got home I texted my mom as usual, letting her know I made it. She then texted saying she need to Skype with me. I hadn’t had the chance to make my normal cocktail after the long trip. Skype, I asked her, is something wrong? “Yes, very wrong.” So I got on my computer and pulled up Skype.  She told me my dad had died that evening.

When leaving them after my short visit that Sunday morning (more on traveling with a hearing loss during the pandemic later), I was a little upset that my dad wouldn’t wear a mask. “I can’t breathe and it makes my nose run.” I left thinking he would probably get COVID19 first and with his kidney troubles that would be that. Instead it was a fast and hard heart attack, which is probably how he preferred it. Suddenly my trip down there turned into the ultimate gift, I got to spend the last of my dad’s days with him.

My parents shared their wills with us years ago so we knew what to expect. Neither of them want any kind of services or celebrations of life. They are simple and humble people. All 3 of my kids wound up being there, my husband, my sister and her husband a long with her dogs. It was the busiest their house had been years. We were there with my mom at different times, not all once. They lived off the grid for a reason, they weren’t social people. My kids spread out their visits so we didn’t overwhelm my mom. It was good to have them there with me. My family is super inclusive about my hearing loss, no issues there. We shared stories on the porch where my dad liked to sit in the mornings and evenings. My boys and husband went out to look at the stars, one of my dad’s favorite things. It was simple and stress free communication wise.

No services meant no struggle to hear. I was not straining to hear different people I don’t hang out with, it takes a while to get used to other people voices and mannerisms to make lipreading work.  That sounds selfish but while already upset (emotions can make all the things I do do hear all the harder), I was glad there wasn’t more to deal with. At funerals I’ve attended in the past, I would always end up crying not only for the person who passed away but my inability to hear the stories shared. People cry while trying not to cry which wrecks lipreading, warps words far beyond the normal. They look down a lot too or off to the side.  The more I want to hear, the harder I try and the worse my lipreading gets along with my what’s left of my hearing. It’s a no win situation. As sad as it is, I was grateful for no formal service.

However, it meant meant my dad’s extended family had to mourn on their own. My mom couldn’t talk to anyone without crying, and she hates crying, so I wound up texting my cousins to tell my aunts.  Told them sorry to be texting but I didn’t have the aunts text numbers. I was happy to text with anyone if they wanted but I couldn’t call as me and phone calls don’t mix well.  They were okay with that and would text off and on and finally my mom was able to text with them too. Texting is a godsend, even for those who don’t have a hearing loss.

At a social online with Google Meet, I mentioned no services and being glad which opened up the floor to others with hearing loss and how they dealt with it in the past.  Most people agree it’s a hard situation. One person said she asked people to pass around her Roger Pen which worked really well until someone forgot. If people take turns going up to the front, it’s easy to leave any FM system on the lectern.

Life celebrations have typically been easier for me, when they aren’t formal. I can around and talk to different people and work it out.  One life celebration I attended gathered everyone in one spot and people took turns talking. That was hard on me, I couldn’t get around the room with about 30 people fast enough to catch anything. Informal is much easier on me.

Death of loved one is hard and being deaf can make it a lot harder. I’m fairly lucky, all things considered; getting to see my dad those last few days and having a family that doesn’t leave me out. I still feel heavy and foggy so it took a long to write.

family photo

Our family, late 70’s.  I’m on the right next to my dad.

Seeing that old family picture takes me back. My dad built that couch (and a month later they came up with a correction as the back was too short) and the cushions were held up by rope. The rope would squeak and groan every time we sat down or moved around. Back then I could hear all that. I remember I had pulsatile tinnitus though I didn’t know what it was then. I remember being as young as 4 and laying on my side in bed hearing ‘footsteps’, not knowing it was my heartbeat.

Always Learning, Never Stops

I miss writing, a lot.  I think I said that in my last post months ago. 

My full time job is to assist others with hearing loss, I’m the Hard of Hearing Specialist. That’s a fancy title however it doesn’t mean I have it all down, I’m still learning and experiencing new situations.

Situation #1

A few weeks ago I was required to attend a 2 day training. Being mindful I requested CART (live captioning) in advance and even helped to hook them up with the CART provider we use. It was a smooth process, the state accepts that accommodations are needed at least in my department. I went in confident and came out feeling apart from the process even with the best accommodation. The source of the problem, a workbook.

CART 1

Only I didn’t have a screen, I was reading off her laptop.

It’s not just the workbook, it started off on the wrong foot. Usually when I go into a group I introduce myself and my hearing loss but that didn’t happen this time because this workshop was about getting outside of yourself and thinking as a team instead. They instructed us to get to know the person sitting next us and introduce them instead…and go! (About 20 people.)

The room erupted into so much noise I was rattled and had to take out my hearing aids so I could focus on the person next me. It was a woman and her voice was mostly out of my range so I had to keep turning around to look at CART until I got used to lipreading her. I was back and forth so much between her and CART that I could not properly introduce her. (Next time take notes.)

She did not properly introduce me either. I was upfront about my hearing loss with her, she saw my initial struggle after the room erupted into noise and was too nice to mention it during the introduction. She did say I came from the Deaf and Hard of Hearing center but didn’t say I was hard of hearing though it was kind of obvious I was getting some special attention with CART set up right beside me.  I think she was trying to be politically correct and draw attention to me in that way. I’m not just a hearing loss but it is a map for communicating with me. (Next time go ahead and speak for myself after.)

The workshop progressed, we had new books and a workbook. It came down to writing in the workbook several times, a pause to write a bit then, “Go ahead and write while we keep talking.” That was just not possible. The first few times I rushed to get my thoughts down on the workbook, which we shared with the others at the table, only to have my thought process interrupted by voices. I hear enough to know people are talking but can’t understand what they are saying unless I’m looking, at either them or CART. So I watched CART and lost my chance to work in the notebook. After about the 3rd time I gave up trying to write in the workbook.

Teamwork was the key topic of the workshop and I was highly aware that I was not participating, it was depressing. Usually CART gave me the freedom to participate but because of a workbook I was not able to. How ironic. (Next time ask about about the training process so I’m better prepared.)

So I went home upset but it doesn’t take long for me to turn from pity party to how I can I make this better? 

  1. Show up early and explain to the training leaders what’s happening on my end, how I cannot write and listen at the same time.
  2. Introduce myself properly to the other 2 at our table and explain why I have very little written in my workbook.
  3. Don’t stress the workbook anymore. 

Which I did and felt much more relaxed on day two. I learned things, appreciated the books and someday soon maybe I’ll be able to look at the workbook more closely. 

Situation #2

I attended the HLAA convention last week. I agreed to go to a breakfast with a group of people I hardly knew and I was excited to get to get to know them better to expand my network within the hard of hearing community.  

First of all, I tend to see a lot of people I know at hearing loss conventions and I tend to want to stay up too late, soaking up being around those of my tribe. I stayed up too late the night before and then couldn’t sleep well the rest of the night. I went to the breakfast meeting over tired and you know what happens when you’re over tired with a hearing loss, right? It makes it a lot harder to concentrate, the brain doesn’t work fast enough piecing together sounds and in fact, it doesn’t work well at all. (Next time plan for more sleep, being well rested means a lot to a hard of hearing person.)

Lucy

How I felt.

There I am walking to breakfast with everyone and there’s a lot of signing going on so again I feel my confidence sliding. I’m learning sign language and I’m nowhere near fluent. When I’m around the Deaf I tend to want to slink back into the shadows and then forget everything I know about sign. Here’s strike 2 right off the bat in this situation, I’m over tired and my sign is painfully slow. Sitting down in the restaurant without my usual alertness, I sat in the worst spot possible spot, the majority of my party were back-lit against a wall of windows. Strike 3, you’re outta there! 

I think all of us were at least hard of hearing and hard of hearing people tend to vie for the same spot in restaurants, it’s a comedy to watch if in the know. So there I was trying to read sign and lips when I could, failing terribly and feeling very sorry for myself. I ate breakfast in silence watching the others and not feeling a part of the group at all. It’s not often that I feel like I’m in no-mans-land anymore, it used to be in the hearing world mainly but sometimes it’s the Deaf world too. I could not wait to get away.

Feeling frustrated with myself I went for a walk after to shake it off. Why did I not speak up for myself? When would I ever be fluent enough in sign, will I ever learn?What a sorry hard of hearing specialist I am.

After a mile or so, I forgave myself. I was over tired and if there’s a time I will break down its when I’m overtired, my brain simply doesn’t function as well. I am learning enough sign that I could follow some of the topics even if I didn’t know the why of the conversation so give myself a pat on the back for picking up a portion of it. I am improving if slowly. When I’m around other hard of hearing people I tend to start signing as I go and it comes naturally. When I around Deaf people I freeze so maybe it’s time to put myself in the path of more Deaf people at work to get myself over that hump.

 

mt fluency

I’m not quite to conversation ridge.

In the space of two weeks I had two experiences that made sure to tell me I’m as much the student as I am a teacher. It’s always going to be that way. I learn from my failures and in working through them,  which in the future build confidence even if I don’t feel it right this moment. 

Now to lighten up with some favorite pictures from the convention because I really did have a good time!

HOH tribe

welcome party

maclains workshop

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Hearing Loss Memes

I look for hearing loss memes to post on our work Facebook page. Some are funny, some are true and some are way off base.  Let’s take a look at memes.

This happens all the time with people who have hearing loss and there’s a variety of reasons. We can sense the other person’s agitation and we still didn’t hear it so we nod and let it go. Or someone is in deep denial still and afraid to admit they can’t hear.

There are a few fixes. One, we ask the other person to rephrase instead of saying “what” or “huh” a third time. We can repeat the parts we heard and ask them to repeat only the words we didn’t hear. If the other person doesn’t know we have a hearing loss, we can start being upfront about it and hopefully their agitation goes down. We can also chose to make these learning experiences for the hearing person. Hearing aids don’t correct hearing like glasses do for vision.

HL meme11

Wrong! They are called hearing ‘aids’ for a reason, otherwise they’d be called hearing miracles.

My high frequency hearing loss prevents me from hearing some consonants so conversations are like the wheel of fortune. Let the other person know that gesturing aids communication or have them use the ASL alphabet to finger spell the word.

HL meme 2

Excuse my language but this one bugs the shit out me. Yelling and shouting does not help most people with hearing loss. Plus, its in the ear (decibel damage there) and the person is not facing me. I hear with my eyes and my ears. Yelling in my ear or at me will only piss me off.  I will reach out, put both my hands on each side of your face and have you face me. That’s the correct way to communicate.

Hold everything! This might be funny to hearing people but let me tell you there are huge mistakes in communication here. You cannot talk to us like normal hearing people, it’s setting up communication for complete failure so you too need to change your ways. Number one, get my attention before you start speaking. Number two, be sure you face me so I can see what you are saying too.

For the hard of hearing people; tell the hearies in you life to face you. Be upfront about your hearing loss and your needs. Don’t just say “I’m hard of hearing,” tell people what you need to facilitate communication. Ask for a booth or a corner table at a restaurant to help block out some noise. Make sure your hearing aids have a program for noisy situations (the program should drop the noise level a few notches and have microphones on focus forward). Sit in well lit areas so you can see what’s being said even if you don’t think you lipread.

HL meme 7

Turn up your hearing aid! He said, “your money or your life,” not your money or your wife.

Um, how is he supposed to “hear” through a mask? I’m sure he uses lipreading with his remaining hearing. Volume will not help, lipreading and proper enunciation makes a big diffidence.  Does the guy with hearing loss know how hears, does his wife? Have they been properly educated about his hearing loss? Do they know hearing aids don’t replace true hearing? I’m thinking they don’t.

There is something to this one. What I heard compared to what was said is often a lot more fun! As long as we both have a sense of humor, it’s lots of fun. Go with it and laugh.  Another round please waiter!

Hearing aids pick up all kinds of noise, not just speech and it can be awful. It will make me clench my teeth so hard I can’t concentrate anymore. Maybe we had too much noise all day and we just need a break. Or we were lipreading for hours and need to rest the brain which brings me to…

HL meme 5

It is so much work and so tiring. If I’m already tired, there’s no way I can keep up so please excuse me from certain social activities at this point. I’ve learned my limit.

HL meme 12

Don’t we wish! Why did hear that and not that? I don’t know but it’s not selective hearing I promise you that. Maybe good acoustics help or the rotten acoustics wrecked my hearing. Maybe I was looking at you and maybe I wasn’t. Maybe you enunciated better than usual or your mumbled. There are so many variables when it comes to hearing loss.

HL meme9

Without captions or a hearing loop I can’t hear you in certain situations. If you want to include me and other hard of hearing people accommodate us and we’re happy to go out to those lectures, pep rallies and workshops. Otherwise you get “what” and we feel isolated while in a crowd.

Hearing loss still has too many misconceptions, there’s still a lot of educating to do and our job is to correct them. If you are hard of hearing please advocate for yourself because when you do, you educate the hearies. Figure out what is is you need to hear and stand by it, you deserve it.

Hearies, it takes too to make communication work. Do your part because we did not chose hearing loss, hearing loss chose us.

 

 

 

 

 

 

 

Speechreading Basics: Anticipation & Prediction

what's next

This piece on speechreading/lipreading is co-written by me, Chelle, and Michele. Michele has been lipreading most of her life and she’s awesome at it. I’ve been lipreading somewhat half my life and only started taking it seriously the last 3 years or so. Michele tells me she doesn’t know how she does it but I figured I could get her talking more about her life long skill by bringing up certain aspects that I use to teach classes.

This post is about using prediction and anticipation with lipreading skills, it‘s a piece of the pie regarding speechreading but it is helpful to become aware of using this and make certain situations easier. Michele added some great comments about advocating for ourselves from the start.

Chelle: In the speechreading class I have handouts with blocks of words. We take turns saying the words, without voice, with repeats as needed. The students tell me it’s easy to do while in class because the words right in front of them but this can be used in daily life in a number of situations also. Knowing the topic of a conversation will carry a person a long way in speechreading and there are a lot of situations we can anticipate or predict the topic.

Michele: I learned to speech/lipread naturally, without even knowing that I was doing it. By the time I was diagnosed with hearing loss in grade school I was already a speechreading whiz, according to the doctor, which was news to me. Once I knew I was good at speech/lipreading, I still didn’t realize how involved of a skill it was and how much of a role anticipation and prediction played in conjunction with lip movements, facial expression, and body language. All of those things work together and it may seem like a lot of effort, but when it comes naturally at a young age it’s simply a part of how you are hardwired, so I don’t even have to think about it. It’s how I made it through 12 years of public school with a severe hearing loss and no help from anyone but me.

Looking back, I can see all of anticipatory skills I used for success. New situations posed a challenge, but I’d gather information and learn as much as I could ahead of time so that I was prepared and knew what to expect. That gave me a head start and meant I didn’t have to work as hard in the moment. I’ve talked to others who lost their hearing early in life and gradually, and it’s something we all share.

Chelle: The grocery store is one of the easiest places to use prediction and anticipation and focus on lipreading. Different clerks ask the same questions over and over again.

“Did you find everything okay?”

“Do you want paper or plastic?” (for bags)

“Credit or debit?

I can anticipate those questions almost all the time and get by. Later stamps and ice came into play at the grocery store and I was ready for that one too. It’s not asked all the time so I might get tripped up with it from time to time. I’m sure to look up and focus on his/her face for the repeat. “Would you like stamps or ice?” Ice comes up in the summer months and not so much the rest of the year, stamps can be year round.

Another question that blew me out of the water when I moved to the Salt Lake area was “Do you want curbside service?” There’s only one store that does that here and it must have taken five repeats before I understood the girl for the first time. I even threw in I was hard of hearing and couldn’t understand her. When I finally understood the question, my answer was, “You do that here?” I shop often at that store and even though it’s not asked all the time, I now anticipate it when I hear something I don’t understand.

Most grocery store clerks look down when talking or I’m looking down getting into my purse when they start talking. I hear enough to know someone is talking but I can’t understand what they say until I’m looking at them. After I hear a voice, I’ll look up and let that person know I use lipreading. (I never say hard of hearing anymore because they still look down and talk louder which doesn’t help me.) Usually people will make sure to face me after that and we get through it without a struggle. The grocery store is a great place to practice lipreading with anticipation and prediction.

Michele: Yes, the grocery store is pretty easy, however the whole looking down while talking (them), and digging in your cart to unload grocery items or rummaging through your bag for money or credit card (you) means you’re going to miss something that is said to you, so I no longer wait for something to go wrong. I let the cashier know from the get-go that I’m a lipreader and if they are looking down while talking, or if I’m looking away, I’m not going to get what they said. Problem solved before it’s even a problem.

It is a good thing that we can anticipate the routine of a thing, as that is a big help in getting through the check-out smoothly, but we can also hone in on the stumbling blocks in a situation ahead of time and take them out of the mix by informing people of what we need from the very beginning. And, as Chelle stated, some things (regional and other) just can’t be anticipated or prepared for. When it’s a place you frequent you can get “smarter” about out of the ordinary exchanges and get to know people and procedure better, but when you’re traveling or it’s in a situation that you know you’re not going to repeat, it’s a different story.

Chelle: As a side note, let’s hear for the self check out stands! There are times when I’m too tired to focus on speechreading and I just want to get out of there as fast as possible spending little as energy as possible.

Michele: Ditto! It’s great to have the option to self-check if you’re brain is fried and you just can’t talk to one more person that day.

Chelle: Restaurants are feared by many hard of hearing people but not me, I often go alone. When I walk in the door I look for daily specials right away. (That’s having the words right in front of me like in the speechreading class.) The waitress announce the specials but they usually say it so fast it sounds like “yadda-yadda-yadda, yadda” to me. I can’t keep up with their recitation without having read it first on the board. That’s anticipation.

Michele: I have a theory… many things attributed to hearing loss—reluctance to go places alone or eat at a restaurant alone, are really not so much because of your hearing loss as they are to the variety in social “norms”. I know many people who have all of their senses in tact that would never travel alone or eat out alone.

Chelle: Now for using prediction; when the waitress comes to the table, she may or may not say her name (If she does I’ll look for a name tag but I won’t overly stress this bit) . One of the first questions she will ask is “What would you like to drink” taking a note and it will be followed by “I’ll be back to take your order.” Sometimes they will ask me if I’m ready to order too after getting my drink down but not always. Somewhere in here, I’ll let them know I use lipreading and to please face me. These people want a nice tip so they are generally very good about following my request.

Before ordering I read the fine print so I can complete my order with as little questions as possible. Back to anticipation here; what are the side options for a sandwich, and what are the options for my steak, etc. Sometimes I’ll get a salad and salad dressings aren’t always listed. If I have enough energy I go for the basics, either a vinaigrette or the always dependable ranch dressing.

That’s how I get by at restaurants. If they communicated with me properly I’ll leave a generous tip so if they see me again, they will be super accommodating.

Michele: I do many of the things Chelle does—look for the specials board and read the fine print—but I also ask my server if there is a written transcript of specials. If not, I let them know that many people, not just those with hearing loss, would benefit from reading about the specials, as it enhances understanding for all.

And, for someone who has that sixth sense—they are so perceptive that they know you have a hearing loss even before you tell them—I thank them for being perceptive and sensitive, and I give them an especially generous tip.

Chelle: Banks are fairly predictable too. For some reason they often comment on the weather, maybe because they are stuck indoors? It’s easy small talk? They will ask my how I’d like my change back, clarify which account, ask me for my ID as needed. Again, there is an easy out at banks thanks to mobile banking and ATMs. It all depends on my energy level.

As we get to know people, we can apply prediction and anticipation with them too. Everyone has their favorite words and topics to talk about. John talks about politics and Annie talks about her kids and grand kids all the time. Our neighbor will talk about gardening. Nancy talk about work and Bill loves sports. Some people use certain words over and over. This is why lipreading is easier once we get to know someone. If you have some hearing left, it even seems like you hear them easier.

Michele: Yes, as we get to know people better we can often improve our “smarts” here too. However, I’ve met a few people who aren’t predictable at all and their subject list is endless. If I have a hard time following them, I tell them straight out… “You’re going to have to tell me what you’re talking about first so I can put what I see on your lips into context.” This helps, but it’s a continual effort to remind them.

Chelle: The calmer we are, the easier it is to get by in these, and more, situations. We have to learn to relax and that’s no easy task at first. The minute we get tripped up, nothing will go right. I’ve always hated going to eat at Subway for that reason. They are always looking down when they talk because they are gathering ingredients and making the sandwich, even after I’ve told them I lipread. I get so uptight there that more than a few times I asked to “Please just make the sandwich like the picture and I’ll eat it!” Only one time have I had one person point to each ingredient and give time to nod or shake my head. If I frequented the place more often I’d get the hang of it and over come my dislike of the ordering process. I’m not a big sandwich person, however, so that won’t happen anytime soon.

Michele: I have to say that I almost never let something slide these days. When I do, it makes me feel bad about myself. However, if someone else just wants to move on, that’s their prerogative. We are all different and that’s part of what we have to teach the hearing public—one size doesn’t fit all… one accommodation isn’t a solution for everyone. Be very specific in asking for what you need.

Chelle: A few days ago I paid a visit to another fast food place I rarely go. I don’t know drill. The cashier was quiet and I don’t think she enunciated well either because I could only snag a word here and there. (I think she may have been hard of hearing because she missed part of my order, or maybe she got sidetracked by my hearing issues.) She asked a few questions that took multiple repeat and some gesturing before I understood what she wanted to know. There was another question I could not get at all and we both finally gave up. I didn’t have paper and pen and neither did they. Only later did I puzzle out that she was probably asking me what sauce I wanted.

Michele: For this scenario, I’ve started to let people know that they need to give me time to process what they’ve said, as lipreading isn’t like hearing instantly. We often need time to process what someone has said, and so I say that. It really does help, as I found I was often walking away when it dawned on me what the person was trying to say or ask. When you say, “Give me a minute to work out what you said.” you’re telling them exactly what you need.

Chelle: Often my students teach me things; little differences in mouth shapes, they might show me a new app for the phone or a gadget. Last week a new student showed us her Boogie Board. Her daughters bought it for her because she has a severe/profound hearing loss and she was having a hard time with errands. It’s a board to write on and by pushing the button it erases it. It’s like having small chalk board, nothing is recorded or saved. It’s super light weight so easy to carry around. When she has a hard time understanding someone, she whips out that board and gets it in writing. How clever! I love how she does what she has to without fear to help with communication. She swears it’s been a lifesaver. I went out and bought one and I’ll keep it in my purse from now on. Well, after buy a bigger purse because the one I have now is already packed.

Michele: I love it when someone comes up with a new way to facilitate understanding. While ordering food at a restaurant in the airport in Boston, MA the server typed out what I wasn’t understanding on the ‘Notes’ feature of his smart phone. I usually do have a pen and paper with me (I save the note pads from hotel stays and carry them in the outside pocket of my purse), or I’ll sometimes resort to handing someone my phone so they can type it out. Whatever works is the right way to go, and what works for some won’t work for all. Be flexible.

boogie board

I knew this would be a good collaboration! As is often the case, Michele inspires me to do more. Being friends with and hanging out with people who are hard of hearing/deaf offers many opportunities to improve on communication by comparing notes. Does anyone else have anything to add about prediction and anticipation?

Speechreading Tips and Hints

Speechreading Tips & Hints
(also called Lipreading)

I teach speechreading at work and it’s becoming a popular class. The classes become a support group of sorts and we all share any insights we might have about lip shapes. They teach me as much as much as I teach them. I enjoy leading this class and sometimes I talk about it on Facebook. I have lots of hard of hearing friends thanks to attending hearing loss conventions. A number of those friends reply to my posts saying they wished they could take the class so I thought maybe I’d start sharing some of what I do here. I’ll even try adding videos.

You’re going to see me swap out the terms speechreading and lipreading. It’s the same thing but someone thought speechreading was better since it’s not lipreading alone. We rely on facial expressions, body language, gestures and situational cues as an aid to reading lips.

First of all, I am not the best lip reader and my students have witnessed me bomb…which I think actually helps them. It keeps it real, lowering expectations for themselves. It’s not something that just snaps in – it takes time, practice and patience which is why I also try to make the class fun. Having a sense of humor is a great help. So I’m not the best and I’m not the worst either. I fall somewhere in between. The students see my confidence and they know I don’t fear social situations and maybe that’s enough to encourage them.

Without hearing aids or my eyes I have a 30% word discrimination. With hearing aids and no eyes I have a 60% word discrimination. With my eyes and hearing aids I catch about 90% of what’s said. Without hearing aids and my eyes I’d guess I’m somewhere around 70%. Lipreading fills in the gaps hearing aids miss. I still get stuck on words but I have ways around that now too. I use my remaining hearing to aid speechreading, they work together.

My speechreading ability depends on a few things:
~Advocating for my needs and making sure the other person knows I use lipreading. I often tell grocery store clerks, “I hear enough to know you are talking but I use lipreading to hear.”
~Whether or not I’m tired. My brain works lightning fast piecing together what I heard and saw all while using deduction to make sure it fits into a proper sentence/thought. If I’m tired, or sick, it’s hard penetrate the brain fog and I can’t keep up.
~How well I know the person. I have a harder time with new people but as I get used to people I do better and better.
~How long I’m lipreading. After a two hour meeting my brain is fried and then I go into shutdown mode for an hour or so afterward to recuperate.
~Am I relaxed or uptight? The more relaxed I am the better I do. The harder I try, the worse I get.

It also depends on the speaker, here are some examples….
~Do they talk too fast or too slow? Yes there’s such a thing as too slow and I call it monkey lips. That’s when people over exaggerate their words in slow motion.
~Do they have a mustache that covers their lips?
~Do they keep turning their head? Some people habitually turn away while giving me directions.
~Did they get my attention before speaking? If everyone did this, it would cut down on many a repeat.
~Do they have an accent? Accents shape words a little differently. After a while I can get used to that too but it takes more time.

I think all hard of hearing people use lipreading to a degree but taking the class brings it up to the next level. During my first class I encourage the students to start focusing on lips and tell people they are reading lips, even if they are just starting. Get in the habit of it. For practice, watch the news with low volume and try reading reporters lips. Use captions (which are usually slightly behind) to figure it out. Some reporters are going to be easier to understand than others simply because they form their words better than others.  You might surprise yourself with how much you catch.  To prove that point in class, I’ll turn my back and read a paragraph.  How much did they get? Very little.  When I turn back around, they get a lot more.  We are already doing it.

Chelle

Me and my red hearing aid molds.

 

Lipreader

I’m a lipreader and I say that to people thinking it’s straight forward.  I haven’t said hard of hearing in a few years because people think it’s talk louder, not look at me.  I want them to look at me so I hear better and I can see.

A few weekends ago I attended a little get together.  The lights were dimmed to create atmosphere so I asked the host if he could turn up the lights so I could hear better.  He laughed and thought that was so funny and I meant to deliver it in a humorous way to keep the request light.  My husband told him, “It’s so she can see your lips better.”  The host is a sweetheart and he turned up the lights and I did okay!

Most hearing people get it when I say I lipread.  (It’s politically correct to use speechreading these days but most people understand the term lipreading better.)  I use my remaining hearing also, like pieces to a puzzle.  Lipreading works well.  It gets them to face me and sound is delivered right to me and I can use my lipreading ability too.  Between the two, I get along great in many situations.  Until I don’t.

Being a Burning Man person since 2002, I attend regional burns and this last weekend was one of them.  I went to run around the fire like the old days but a ranger stopped me with arms out.  I hear enough to know she was talking but heard nothing of what she said so I told her I lipread.  She immediately started using American Sign Language (ASL) with me and I t was hard not to roll my eyes.  Or maybe I did. I told her “I lipread, I don’t sign.”  She stopped but then she didn’t know how to talk to me. She kept looking down and away so I told her to keep her face toward the fire so I could use the light too.  After all that, she was pretty good and explained the new rules of the burn.  I eventually admitted to her I am learning sign but I’m not fluent enough to have conversations yet.  She told me she’s an interpreter at the local college.

Today I was talking to another lipreading friend and she said she often has problems lipreading interpreters.  I thought that was odd at first because at work the interpreters will voice interpret for me when necessary….but wait.  I work at the state Deaf and Hard of Hearing Center.  They know me and other hard of hearing people so they know more about our needs.

So I started thinking about it. I have a neighbor across the street who is also an ASL interpreter at the local community college.  She’s painfully shy and doesn’t use any body language when talking to me nor facial expressions.  (Hard to imagine her interpreting.) She talks super low too and I barely register her voice most of the time.  I think my friend is right, most ASL interpreters don’t know how to talk to the hard of hearing.  What an odd world.  The Deaf and the Hard of Hearing have troubles with hearing communication so you’d think it would cross over but it generally doesn’t.

lipreading website

Want to learn more about lipreading?  Here’s a few sites for you.

Rachel Kolb.  She’s deaf and she signs but she also lipreads.  She made a great video describing how hard it can be to lipread.  https://vimeo.com/148127830

Here’s a site for practicing lipreading though it’s from the United Kingdom.  The accent makes it harder to understand however I was surprised at how many words I understood.  https://pddcs.co.uk/2013/11/19/online-lipreading-practice-resource/

Here’s the American version which is easier but after a few lessons they charge a fee.  https://www.lipreading.org/

For a lot of fun and to see how lipreading can go so wrong, watch the bad lipreading series on YouTube.  Here’s a football one to get you started https://www.youtube.com/watch?v=W-kGosnzvjU There are all kinds of them, including politics, Star Wars and more.  Be sure to click the CC button. Sometimes it’s YouTube craptions but mostly I think they have good captions.

Here’s my favorite speechreading book: https://www.amazon.com/Speechreading-Carol-Garretson-Harriet-Kaplan/dp/B0088OYYFW/ref=sr_1_1?ie=UTF8&qid=1468884139&sr=8-1&keywords=speechreading

There are DVD lessons to buy out there too but I’m not seeing the one I work with.  I’ll find her full name when I go to work on Wednesday and enter it in the comments afterward.

There are lipreading classes available.  I know because we teach them here in Utah.  I teach the class myself and it’s my favorite one.  Look up your state Deaf and Hard of Hearing center for resources.  Try a web search too.  The bigger the city, the more likely there will be one in your area.

Seeing Is Hearing

A friend of ours had a daughter graduate from college last Saturday and we were invited to her party that evening.  Since I’m trying to wear my hearing aids more lately, I didn’t bring their case with me because if I can’t put them away, I have to wear them.  At first people were gathered in the kitchen which has 1 1/2 walls of window, custom cement floors, high ceilings, marble counters and a two sided fireplace.  It’s gorgeous but it’s an acoustic nightmare and I wanted nothing better than to take my hearing aids out but I couldn’t.  The reverberation made the hairs on the back of my neck stand up so I migrated out onto the deck where I could sort sound better.  Soon most of us were out on the deck and only going inside to get another drink or more food.

It was a perfect evening with some clouds, a light breeze with the temperature in the 70’s somewhere and a great view of the Wasatch Mountains.  Patio furniture gave everyone a place to sit and we formed a circle of chairs with a group.  I like circles.  I can face everyone and hear most of it.  Ken even tested me once asking me if I heard and when I nodded my head (wrong answer on my part because that looks like the deaf nod) he asked me what I heard and I repeated it.

I enjoyed the chat about a cheese documentary and what Europeans used to put in cheese  and since I started that subject (remembering a chat about feta cheese with someone there last Christmas) it was easy to follow.  When the subject changed to a young man who was one of the Lost Boys of Sudan I could follow that too even though his speech was lost to me because I couldn’t see him.  The lady who sat next to me turned around to face me and gave me the short version.  It’s so nice being in a group like that.

The graduate’s sister started speeches so we all stood up and suddenly I was out of my circle as a new one formed.  Now I was behind people but I could see the sister and ‘hear’ her words but when the graduate replied to my left behind others I heard nothing.  I turned to Ken and asked for his help.  He shrugged his shoulders and said, “I don’t know.”

“Just two words to sum it up,” I asked.

He shrugged his shoulders again because he is terrible at this.  These are the kind of situations I hate.  I want to hear and can’t.  I don’t blame Ken because it’s not easy for his brain to sum things up, he doesn’t know where to begin or what words to choose.  His ADD brain is floating with all the words so he can’t pluck two plus I think he feels it’s rude to talk to me while speeches are being made.  Even I was afraid to move and disrupt things so I stayed put and trying to contort my body and hear what she was saying.

ear

So frustration with my inability to hear was mounting.  Not only was I moving in weird ways for a better view I’m pretty sure my eyebrows were down and I was squinting with concentration.  The host, our friend, must have noticed because when I looked her way she motioned me to her side.  She didn’t have to motion me twice!  I hustled right over and standing next to her I could see everyone’s faces again and I heard most everything again. I could even understand the two charming, young men from Africa with their accents.  How nice that was!  I’m grateful to her for recognizing my look of frustration.

Once again I was astonished that being able to see made such a big difference.   I don’t consider myself the best speech reader but  when I get through situations like these, it’s proof that seeing is hearing.

happy eyes

Progressive Hearing Loss

Progressive hearing loss creates big dips in hearing and other times it chips away at hearing little by little but either way, it means constant adaptions. Once I got used to a certain level of hearing loss, I lost more and wound up readjusting again…and again. With each drop, certain coping strategies I used were no longer effective. The same for technology I bought too.

The first coping strategy I learned all on my own was faking it or bluffing. I pretended to hear when I couldn’t understand a word the other person said. I feared being a nuisance among the hearing if I asked for repeats too often so I bluffed to fit in. I looked at people’s face for clues: were they serious, was there a light in their eye or a smile to show humor or were they amazed at something. Then I judged their tone in the same way: serious, light, harsh? Then I put forth one of my stock answers: “really” or “wow” using the appropriate tone. Sometimes, I used the deaf nod encouraging them to go on. The only time I needed to ask for repeats was when people asked me a question. I might try answering it with a simple yes or no but when their eyebrows raised I knew I answered wrong so I backed up and asked for a repeat. I was near expert at this and very few people knew I had a hearing loss, until I lost more hearing.

I lost the ability to judge tone and guessed wrong more often, massacring conversations by coming up with off the wall answers. I looked like a totally idiot instead of someone who couldn’t hear. Learning to be upfront took bravery but it didn’t take long to get over my fear since most people were willing to repeat or help me out. Bluffing is a hard habit to break and even 15 years later, I fall back on it unconsciously when I’m over tired or stressed out.

Things were all right for a few years, telling people I was hard of hearing. They spoke up, I heard and answered…until I lost more hearing. Volume alone no longer worked and all I heard as they looked down or talked into windows was something to similar to the Charlie Brown adult voices. Now I needed people to face me so I could use what little lip reading skills I have. I needed all I the clues I could get. Instead of telling people I was hard of hearing, I changed it to “half deaf.” Deaf grabs their attention and they look up to talk to me. Deaf equals lip reading. I had a higher chance of understanding what they said if they looked directly at me and though I’m no ace at lip reading, every little bit helps. It’s a skill I picked up without knowing it as I lost hearing.

Some years later, my hearing took another turn south and I had to re-adapt to social situations. I found myself sinking in rough seas of noise. I relied on lip reading more than ever and since I’m not the best, I missed a good portion of every conversation. It took a couple of meltdowns before I realized noise rendered me deaf. Now part of my getting ready for events isn’t just about what I’m going to wear, I have to make sure I leave in plenty of time to talk to presenters about my FM system and how it works. I also need to claim a seat up front so see the speaker who hopefully doesn’t walk around much.

Progressive hearing loss also means a series of steps down the ladder in phone communication. My hearing loss showed up first on the phone because there are no visual clues which I didn’t know I already depended on. My second pair of hearing aids had a t-coil switch. With practice, I figured out where to place the handset on my hearing aids but once I got that down, I heard on the phone fine as long as the background noise wasn’t too extreme on either end.

There came a day when t-coils where no longer enough. With encouragement from SWC friends online, I contacted my phone company for a volume control phone. The phone they sent me worked great because of the amount of volume I could get. (My family had to adapt to this as well learning to check the volume before answering.) Since I hear voices differently, I constantly played with the volume. For most women, I had to push the volume to max and for men I lowered it though there were exceptions. Some women have strong voices blowing me away making me scramble to turn the volume down and a few men I could barely hear so cranked the volume up. Between these two devices, I got by for several years with different pairs of hearing aids.

Then neither my hearing aids with their t-coil or my volume phone was enough so I started to hand the phone to others when I couldn’t understand the person on the other end. I worked with a lot of good people who helped me, taking over the calls without complaining. At that time, the other only other option would have been a TTY which wasn’t exactly what I needed either.

Relay services on the web in conjunction with my cell phone made phone calls easier again but it wasn’t a viable option at work. At home, it took away spontaneity. I had to plan calls. I had to leave messages with people telling them text me or to go ahead and call and leave a clear message, I would call back via relay. Some businesses never bothered calling back.

Trying out all technology available, I bought a uDirect (similar to an iCom) to work with my cell phone. I hear decently enough on it to pick up about half of what’s said. Half is easier to puzzle out especially if I know what they are calling for. As soon as I get a name, I enter it into my cell phone so when they call again, I don’t have to puzzle out just who is calling. Again, there’s no spontaneity. I wear my uDirect at work, the salon, to accept calls but if I’m not at work and my phone rings, I can’t scramble fast enough to put it all together to take the call. Other times my uDirect battery dies and the phone becomes useless unless someone texts. Wouldn’t it be nice if all the hearing world adjusted to my needs and texted me only? Someday that might just happen because I’m sure at some point I’ll lose the ability to talk on the phone at all. I haven’t lost the phone completely yet, but that is coming I’ll have to adjust to caption phones only.

While I still have some ability, for a long time I lost going to the movies. I grew up going to the movies, Sinbad and the Eye of the Tiger, Star Wars, Disney movies like The Apple Dumpling Gang. The movie industry made money from me until my hearing loss interfered. I started being choosy about which movies I saw because too often I missed the punchline or key words in dialog. It’s irritated me when everyone laughed and I have no idea what was said.

Because of SWC, I found out what an ALD (assistive listening device) symbol looked like and when I saw the sign in the ticket window at our new theater, I asked for one. They had infra-red headphones, with big padded ears and volume control and they worked great for me! I didn’t like the conspicuous little red dot shining like a beacon behind my head but I got over it. That year I saw every movie up for an academy award.

ald

A few years later I moved and the theaters in my new city didn’t have the nice big padded earphones. They had the little headphones that sat on top of the ear canal. One theater had one-sided headphones, like pick my best or worst ear??? They didn’t help the tiniest bit and I missed dialog, plot and jokes so I gave up going to the movies all together.

I missed going to the movies and so did my family. I tried keeping track and waiting for movies to come out on DVD but soon I lost interest. It wasn’t the same as seeing it on the big screen. I lost track of actors and actresses. Ten years went by before CaptiView, Sony caption glasses and open captioned showings came about letting me back into the movies again. The funny thing is, I got so used to not going to the movies that I forget the option is there again. Slowly, I’m getting around to movies again and I love it.

We aren’t the only ones to adapt, our family learns to change with our hearing too. They can’t talk from other rooms and need to face us when talking. They take or make phone calls for us and they learn to text. They learn to be on one side of us to be in the ‘better’ ear. If they want to be social, they need to help us out a little. They leave the captions on the television all the time. They let us know when the tea kettle is whistling and when we left the water running. Maybe they learn a little sign language along with us. Hopefully they do all this with patience.

Lots of emotions accompany each change too. The whole grieving process can be applied; denial, depression, anger and frustration trying to figure out how to make things work again. I see my partner’s helplessness as I break down, anger when things don’t go as planned because I can’t hear and how much he missed movies too. It doesn’t only affect the one with hearing loss.

The one sure thing in life is change and my hearing will do that. Someday I won’t have the phone at all except for email and texting and I might not be able to understand the person in front of me. First I’ll throw a fit and then I’ll do what I gotta do. It’s not the end of the world, just another way of doing things, again.

9 hours average

I went to see my audiologist again while in Salt Lake earlier this week (back in AZ now).  I logged in on a total of 577 hours with my hearing aids since I last saw him.  It averaged out to 9 hours a day.  I said something like, “Not ten yet but I’m working on it.”  He said he was thrilled and “I’m not going to split hairs with you. That’s great! You were only averaging 3 hours a day the last time.”

So he turned up my hearing aids a bit. He told me he only turned them up a tiny bit but it sure seems like a lot to me. I spend a lot of time in my noisy environment program. I can hear my cat meow a lot more. He is a talker! I even heard him from behind me while we were driving down the road. (He stays with my mom when I’m gone for an extended time.) It’s nice to hear him. I mostly lip read my cat before this current audiologist reprogrammed my hearing aids.

I think I hear more birds too. I’m at the city library now and I’m amazed at all the noise in here, even in my less volume noise program. Aren’t libraries supposed to be quiet?  I had to ask my mom to not talk as loud as she normally does.

When I take my hearing aids out, I really do feel nearly deaf. I’m shocked each time how little I do hear even though in a way the quiet is welcome.

I asked my audiologist to make me a note for Motor Vehicle Division here to add to my driver’s license, a note saying I’m hard of  hearing since the MVD won’t take my word for it. This way, if I’m ever pulled over or in an accident, the police or emergency people know what to expect.  He was happy to write one up for me and put in it I have a moderate to profound hearing loss.  I do? I didn’t know I was that bad.  I thought it was mild to profound.

This makes me wonder at how well I do in the world. I feel like I get along fine but how much struggle do I put into hearing without knowing it?

 

Hearing Aid Programming is Important

  It’s been over a year so it was time for me to get a hearing test. My good ear didn’t feel like my good anymore. My hearing aids didn’t seem to be doing the job so I thought my hearing dropped again.  I found a new audiologist through our HLAA meetings and he also sits on the state Advisory Council with me. His family has been in the hearing aid business for a long time.  As a teenager, he built his first hearing aid. He has a doctorate in audiology somehow and he calls himself “a hearing aid nerd.”  He doesn’t have a hearing loss but he wears hearing aids because he likes their technology so much. He’s very knowledgeable about all products hearing related. Impressed with him and what he does, I made my hearing test appointment with their business.

  When  I made the appointment a month or so ago, they asked me to bring a family member.  I explained my boyfriend may be working and then asked why?

  “We have the family member give the word discrimination test.”

  “Why?” I asked with shock. “Of course I’m going to understand my family better than anyone. That hardly seems like a fair representation of the world at large for me.”

  The receptionist shrugged her shoulders. The guy who just serviced my hearing aids shrugged his shoulders so when I got home, I rattled off a long email to the hearing aid nerd.

  Here’s what he wrote: “ 1) it is important to know how well you understand someone who has not been trained to speak clearly and whose voice you will hear on a regular basis. 2) many of our patients are very skeptical. It helps them realize we are not fudging the test to make it seem that they hear worse than what they are truly capable of. 3) if it turns out that you (or any patient) needs a new hearing aid it is nice to have someone there that you trust helping you make that decision. We work with seniors and as such they can be vulnerable. We never want anyone to feel that we pressured them into something, so having a family member there gives you more backup.”  So I decided to give him the benefit of the doubt.

  Yesterday was my hearing test and it was his dad who gave me the test. I brought my daughter feeling like she is a better representation of the rest of the world for me. They asked how well I understand her and she said, “She’s uses me as her interpreter all the time,” so we decided I hear her better than most people. He asked lots of questions, more questions than I’ve ever been asked. Tell me about your hearing, what’s your history? What’s difficult for you? Is it hereditary? Do you have tinnitus?  What do you think of the telephone? Why did you switch audiologists? What else do I need to know? And more but I can’t remember them all. He checked my hearing aids and said they sounded good to him.

  My daughter sat across the table from me, he sat in the middle and me opposite of my daughter. No sound proof booth. I like that and the word discrimination test ended up being totally different than I expected it to be. He explained they use short simple words to make it a little harder to piece together sounds, we hard of hearing people are so good at that. He had me take out one hearing aid, left side first.  I closed my eyes and my daughter read words from a list he pointed to. I got 30% with that ear. I switched hearing aids and she read another list, I got 20%. Then he had me put my right aid back in and plug my open ear. My speech discrimination was ZERO.  I hear better un-aided. Not good news he said. 

  Another realization hit me while listening to all this. I must lip read a whole better than I give myself credit for.  I guess when I’m relaxed or just doing my thing, it comes easy without thinking about it.  The harder I try, the worse I get.

  Next we did the actual hearing test in the same room. He told me because I have tinnitus, he’s going to use a warbly beep instead of the straight beep. No one offered that before. Usually it’s hard for me to tell the straight beeps from my tinnitus. He slipped headphones over my ears right there at the table and had me close my eyes again.  It turned out my hearing hadn’t changed much but we needed to do something about getting my hearing aids to help me more so he turned me over to his son, the hearing aid nerd.

  He changed my main program drastically. He moved things around and pressed buttons without calling the company, yay! My daughter, him and I started talking to how the new settings worked. Too much “sh-sh” sound I told him. He clicked a button on the computer and it was gone. Both his and my daughter’s voice sounded richer. He turned on some background noise to make sure things were okay. He did a quick word discrimination test with me with my aids in and eyes closed (easier for me to hear men) and I was to 50% discrimination. In that small office, things already sounded a lot different. I felt like I had new hearing aids. He asked me to wear them for 10 hours a day. I groaned so he added if things got too loud, I should turn them down instead of taking them out.  Then we set up an appointment next week for any necessary adjustments. I walked out of the office feeling good about the whole experience. I was there for two hours and they didn’t even charge me. Wow! People who care.

  Traffic noise outside hit me hard. I went to my noise reduction program.  I waited a few minutes and felt like my eyes were tearing up so I turned the volume down next. That was okay.

  I could hear my daughter in the car easier. Road noise wasn’t overriding the conversation, that’s good. At home I heard new tones on the wind chime. I kept asking what certain noises were; dishwasher has a small barking sound to it at times, the chickens make a funny sound and his phone makes a weird sound when emails are sent that I’ve never heard before. The toilet flushing sounds horrendous making run out of the bathroom as fast as I can. 

  I wore them for ten hours yesterday and by the time I took them out, I was exhausted! Brain dead! My boyfriend tried talking to me as I laid down and I told him, “I”m sorry. I’ve had about all I can take of hearing today,” and sent him away. I fell asleep fast and slept hard.  

 Today I am waiting to put my hearing aids in until later. I have four hours worth of meetings tonight.  I usually stay and visit with people so I just know I will be really glad to take them out again and crawl into bed. I hope my brain adjusts to all the new noise soon. If not, the volume has got to come down.

  I have audiologist hopped since I moved here. I brought my hearing aids two and a half years ago. That guy seemed all right at first but he didn’t really listen to me. He only wanted to make small changes here and there. My second try with an audiologist was a lady who reset my program according to what the computer wanted, not adjusting anything. The third guy didn’t know my hearing aids at all and had to call Phonak to get issues straightened up. Listening and hearing are two different things and I feel like these guys listened to me. Time and probably more adjustments will tell but I think I found the right people.  If you’re in doubt about your hearing aids, keep looking. We don’t have to settle.