Category: Sensory Loss

Categories
Communication with Family Connections Emotions, Psychological Stress Hard of Hearing Hearing Loss Sensory Loss Vulnerability

Grief: Hearing Loss & Healing

Join our LIVE! Workshop on Grief: Hearing Loss & Healing with Gloria Pelletier on February 7th, 6:00 – 7:30 PM Mountain time online via Zoom. (Adjust for your time zone.) 

Registration is required, here is the link. This is a Let’s Talk Tuesday Workshop.

This post is written by Gloria Pelletier (M.S.W., L.C.S.W., L.I.S.A.C.) unless otherwise noted. This is the foundation for the workshop, which explores other aspects of grief.  

“The ability to hear connects us to our world in many ways.  From treasured contact with friends and family to maximum performance in the workplace to physical safety.  Hearing provides deep and important connections that no other sense can replace.”  (Hearing.org)

“Blindness cuts us off from things, but deafness cuts us off from people,” is a moving quote often attributed to the famed 20th-century activist and educator Helen Keller, who achieved a remarkable career championing the deaf and blind. Those with serious hearing loss often cite this quote. (AARP)

Hearing loss as a stressor in many people’s lives?

Let’s explore where hearing loss occurs in the ratings of stress in society. Below is an older chart of stress which is still the foundation of many other charts for loss.  As you can see, hearing loss rates with number 6 as a “Personal Injury or Illness” with 53 points. We could also add in number 11, with change in health of family members, which is another 44 points.  (You can add other stressors together.)   

For more info: https://en.wikipedia.org/wiki/Holmes_and_Rahe_stress_scale

That is a huge amount of stress that is unchangeable. One cannot go back to hearing normal again and most likely will lose more hearing as we age.

That level of loss often creates grief. Elizabeth Kubler Ross’s stages of grief are well known (denial, anger, bargaining, depression, and acceptance). Now a person has gone from multiple stressors in their lives to grief.  How did they get there?

Grief isn’t always about death.

It can be the loss of communication as we know it. The inability to communicate, the very foundation of relationships, changes our lives profoundly without warning. Meaning without our permission, sometimes without an illness, without our knowledge – our ability to communicate is permanently altered. There is a sense of loss, uncertainty, isolation, not feeling safe and other overwhelming emotions.  

One of the key functions of hearing is a response to speech, the primary way we connect and communicate, emotionally and intellectually with each other.

A discontinuation of communication: 
  • Can’t understand speech with background noise
  • Need more volume to understand
  • Requests for repeat
  • Requests to speak slowly
  • Withdrawal from conversations
  • Avoidance of social situations, isolation
  • Uncertainty of our understanding of speech
  • Disruption of speech continuity
  • Muffling of speech and other sounds
  • Relationship changes

Hearing Loss is more profound and far reaching than our society has recognized.  Communication is our means to our relationships and family.  Once interrupted, how do we heal?  

Healing:

“…. acceptance takes many forms for different people, but it usually indicates some integration of the loss into one’s life. In this circumstance, acceptance may mean having all the negative feelings about one’s hearing loss while not letting those feelings interfere with relationships and daily life. When going through the stages of mourning, functioning may be affected over the short term, but the person usually will move toward some degree of acceptance. If they do not, they may need emotional support from either a therapist or a support group.”  Kaland, Mary and Salvatore, Kate  The Psychology of Hearing Loss | The ASHA Leader

Some tips that Hearing Loss LIVE! (HLL) has already expressed for healing:

Find your tribe.  Meaning find people with hearing loss that understand your situation and can relate to your experiences.

Information:  

Discover information that helps you understand your hearing loss.

  1. Take “Living Well with Hearing Loss”, an upcoming class with Dr. Ingrid McBride AuD and Gloria Pelletier, LCSW.  
  2. Lip Reading Concepts & Lip Shapes LIVE! classes with Hearing Loss LIVE! (more info)
  3. Upcoming Seminars/Workshops geared to the mental health field for hearing loss. (Chelle Wyatt,  HLL and Gloria Pelletier, LCSW)      
  4. Hearing Loss Live Series of collaboration of topics by Gloria Pelletier, LCSW
  5. Support groups: Hearing Loss Association of America, SayWhatClub and Association of Late Deafened Adults.
  6. Know how hearing loss affects your communication, relationships and ways to mediate them. 
Role Models: 

 Find an organization or person who role models for you how to live with hearing loss and have integrated their hearing loss with their lives.

Americans with Disabilities Act (ADA):  

Know your rights under IDEA, Section 504 and Section 505. Become informed about your disability and how to request accommodations.  Request loops in church, city hall, theaters.  Make sure you have your audiologist turn on your telecoil in hearing aids and cochlear implants. 

Vocational Rehabilitation Agency  

If you qualify, insist on equipment for communication, classes in rehabilitation for hearing loss, knowledgeable Rehabilitation Counselors.

Psychological Assistance

Insist your therapist or counselor has minimal requirements of knowledge for hearing loss and its effects on your communication and relationships.  There is no shame in asking for help in rehabilitation of your communication with family and society.  It is your right!!!

Art

Express your feelings and emotions through any form of art. Self expression through painting, crochet/knitting, mosaics and so much more. Creation eases some of the pain of grief a.

Hearing Loss LIVE! comments…

Chelle: Since my hearing loss didn’t come from an injury or illness (that I know of), I forget it falls into the personal injury and illness category.  Living most of my life with hearing loss, I know how it affects family dynamics. After my hearing test last month, I am experiencing some grief. (I’ll have another blog for that soon.)

Julia: Hearing loss grief affects the entire family. Open the communication channel from the get go. Tell each other what your grief looks like. Healing takes time for both of you, and that’s okay. (This too is an upcoming topic.)

Other posts you may like…

If you liked this post, learn more about Hearing Loss & Collateral Damage to see how it affects family and friends. In April last year, we posted The Emotional Side of Hearing Loss which ties into grief.

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Categories
Communication Access Hard of Hearing Hearing Aids Hearing Loss Hearing Technology Lipreading Personal advocacy Sensory Loss

Hearing Tests: Mixed Emotions

By Chelle Wyatt

In 30 plus years of wearing aids, I’ve never had hearing aids longer than 6 years until now. My current pair of aids are over 8 years old so this is a milestone. They might go 10 years with effort. There are minor glitches such as static on the right side until I wiggle the wire to my ear mold. They also don’t sync together, that means I have to change programs on both sides instead of one. Nothing huge but I’ve decided It’s time for new technology with more connectivity.

This involved getting a new hearing test. My last hearing test was over four years ago. I suspect there’s been some change but nothing huge. Hearing loss can be sneaky, dropping slowly therefore easily dismissed. It’s been about 15 years since I’ve had a significant drop in hearing and this too is another personal record. 

New Hearing Aids

Overall, I’m excited for the opportunity to get new hearing aids.  It’s a new adventure with new technology. I’m going to love being able to tweak programs in the app more to my liking. (I’m a bit of a control freak.) My new audiologist is hard of hearing himself. I’ve heard good things about him through my local HoH friends so he comes with recommendations.

He waved me into his office for a chat before the test. Because he’s hard of hearing, he’s good about facing me while talking. I didn’t wear my hearing aids going in, what for? They are going to come out for the hearing test anyway. I let him know. He goes on with questions about my history with hearing loss. There’s a small moment of panic as I get used to his voice and how he talks. I remind myself to wait for it, a technique we teach in our Lipreading Concept class. I catch on and it gets easier.

He asks about my last hearing test 4 ½ years ago. I forward my last audiogram to his email. He looks at it and looks back at me, “I’m really surprised you are doing so well without hearing aids” I tell him, “It’s because I’ve learned to advocate for myself and I teach lipreading classes.” 

Lipreading & Self Advocacy

Hearing loss doesn’t get better, but I “hear” better than I have in years. What gives? It was me and my ability to create healthy communication boundaries using the 3 Golden Rules. Hearing aids, cochlear implants, no hearing devices…these 3 rules have to be applied for successful communication:

Hearing aids are a great tool. I’ll never be without hearing aids as long as they help me. However, hearing aids alone haven’t gotten me where I am. It’s also taken the tribe, accommodations and being proactive. 

the Hearing Test

He uses a soundproof booth, something my last audiologist didn’t do. It feels odd getting back into one. Funny thing is, I’ve been in this very booth before. My first audiologist in Utah had this office. He retired and this new AuD bought the business. Once hooked up, he starts with the beeps. I wait…and wait. I’m picking through what is tinnitus and what are real tones. Sometimes my tinnitus mimics the beeps.

Next came the word discrimination test. It’s a computer voice, no lipreading is possible. Cowboy. Hotdog. I repeat what I hear. Those words are expected from years of previous hearing tests. Then it goes into one syllable words which are harder. Because he’s hard of hearing, he has to stop the computer voice and ask me to spell what I heard. I can tell I heard wrong because I see the corner of his eyes crinkle up into a smile above his monitor. 

Hearing in Noise Test

All these years, I’ve never had a “hearing in noise” test, abreviated as HINT. It starts with multiple people talking and at some point I’m supposed to pull in a voice that sounds closest to me and repeat what I hear. Out of 3 examples, I’m only able to figure out some words on the first test. The next two tests I couldn’t pull a word from. It blew my mind. I suck at hearing without my eyes. 

Classis ski clope loss, going rom upper left corner to the lower right corner. The red line is just below the blue line.
You can see all the sounds of speech I miss in the upper mid to right “speech bananag” in dark blue.

After the tests are all done we go over my results. In the past, my ears have stayed about equal, the red and blue lines (for right ear and left ear) mingled and crossed as they plunge down to the profound in a classic ski slope hearing loss. This time, my left ear has only dropped a tiny bit in a few frequencies. My right ear, however, has taken its leave of the blue line. Its line now stands alone below the blue line. My word discrimination is 64% in the left ear and 40% in the right ear, with the appropriate level of amplification. “It’s a small drop in hearing.”

The 20% drop of word discrimination in one ear doesn’t hit me all at once. It’s only a little loss. True enough, I’ve had bigger drops in the past. Count myself lucky??? Plus, I have already  been dealing with the hearing loss without knowing it for probably the last six months. As I sit in the office, a few pieces of the puzzle slide together with recent incidents. 

It is a loss.

He lets me try a pair of hearing aids in the office to see what I think. I wasn’t sure so we made another appointment to try other brands. As I leave, I feel the excitement of new hearing aids. It takes a day or two for me to mull over the 20% loss of word discimination in the right. A little grief starts to settle in.

To be continued.

Even though it’s “only a little loss”, it has ramifications. I feel the loss and it shows in my day to day life. I’ll explore that in another blog soon.

Past posts that might interest you…

Did you like this blog? Read more about our Lipreading classes. These classes have made a difference in my day to day communication. We shared Vulnerability with hearing loss in this blog/podcast.

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Categories
Hard of Hearing Hard of Hearing Defined Hearing Loss Mental Health & Hearing Loss Sensory Loss

Being Comfortable with Hearing Loss

What’s your comfort level with hearing loss? 

Is it possible to be comfortable with hearing loss?

Chelle talks about shame and how she got over it. Julia covers the hearing side because hearing folks aren’t always comfortable with hearing loss.

Being comfortable with hearing loss means different things to different people. You can explore this topic with us all month with this blog, a podcast and through our YouTube channel.

Register for our workshop January 3rd from 6:00 – 7:00 PM and share your ideas with us. Can’t attend that night? We will have a presentation with workshop info available on our YouTube channel shortly after the event for a limited time. (PS: We think the live events are better because of the participation.) 

What Being Uncomfortable with Hearing Loss is Like

Chelle: Being comfortable with my hearing loss is something I struggled with for years. There were several years I hid it. Why? Because I was 23 years old, too young to wear hearing aids. My then husband teased me telling me I was a defective model. He might have to trade me in. He used to turn the captions off on the TV because they were in his way. When repeating, he could be nasty about it and he would use my hearing loss to his advantage. With all that, it’s no wonder I was uncomfortable with hearing loss. My thinking was that everyone thought the same as him; my hearing loss was a pain in the ass. (Side note: we got a divorce.)

It took time to unlearn being protective and fearful about hearing loss. That came step by step with my next husband who was also my best friend. He didn’t mind my hearing loss or my captions. Repeating things was no big deal for him, he did so easily. He was good about cluing me in on situations. At first I was horrified about how open he was with others about my hearing loss. However, this is how I learned most people were willing to work with me. Thanks to this husband, I stopped hiding my hearing loss.

You Don’t Know What You Don’t Know

Even though I was much better about telling people I had hearing loss, I wasn’t able to share best communication practices. I didn’t know what I needed. Conversation was hit and miss and could be very frustrating, even with my hearing aids.

17 years into hearing loss & hearing aids, still fairly clueless about accommodations.

Then came the next big drop in hearing. Here’s where I hated my hearing loss. This was no-man’s-land. Nowhere close to hearing and not Deaf either. I was lost and angry. If I couldn’t be hearing again, let’s just stab my ears with a pencil and be done with it.

Yes, I really thought that and expressed it out loud once. My husband never forgot that statement. No one seemed to understand hearing loss. Here’s new hearing aids, you’re all better now. I was not all better. In fact, there were times when I was entirely stuck. I made it my mission to learn as much as I could about hearing loss, hearing aids and more. Anything. Everything that might help and it did help.

Having a Tribe Behind Me

The SayWhatClub helped me a lot over the years. This is their 2022 convention picture.

After a few years, I learned how to live with my current level of hearing loss. Thanks to some of the best people I know, who also have hearing loss, I learned more about my communication needs and the available accommodations. They helped me find my place again in the world. With their help, I learned to be comfortable with my hearing loss. Even though my hearing still sucks, I actually “hear” better than ever because I learned how to be proactive. I learned to be successful with and without my hearing aids.

Hearing partners need to be comfortable with hearing loss. 

Julia: When hearing partners are not comfortable with hearing loss, we set unachievable hearing communication goals. An example:  “You need to go get hearing aids so you can hear me better.” It’s not you vs me, it is a “we” thing.

Twenty years of attending hearing loss support groups as a hearing partner has taught me to have a conversation about hearing loss. We have to have several conversations to become comfortable with hearing loss. We have to be comfortable with communication adjustments that will be worked on together.

Julia and her husband with their son.

What works for us

My husband has had a mild hearing loss for 8 or so years. It has not progressed. He does not wear hearing aids and that’s his choice. I support his decision. The sounds my husband is missing do not affect his quality of life. When/if he gets to the point he wants hearing aids, we will have a conversation to work on communication and being comfortable with the next change. 

Right now when he needs extra volume for understanding, he uses his noise canceling bluetooth headphones. We tried a few different brands and wound up with Blue Tiger as his favorite. He has one pair he uses with his phone and another pair for television. 

Julia with her family at an outdoor event.

Our outdoor adventures are not hearing aid friendly. He enjoys planes, trains and automobiles and dreams of becoming a mountain man. Black powder rifle and all! For him outdoor hearing protection is what is needed to protect his hearing from further loss.

Communication rules are by far the best way, in my opinion, to get comfortable with hearing loss. We started using them long before hearing loss was part of the marriage equation.

If I:

  • Get his attention: We’ve been married almost 30 years. That means we do a lot of “uh-huh” marital bluffing that has nothing to do with hearing loss.
  • Face him the whole time: This way I can tell if he is understanding what I’m saying. He can watch my facial expressions and listen to my tone to better understand the conversation. Yes, it turns out I have a “no bluffing look.” We are talking 30 years folks, 30 whole years.
  • Be within six feet: Outdoor activities can be tricky with this rule. Try some different scenarios if you like talking and walking. We do a lot of “uh-huh” here too. We may have one or two dogs with us too. One of us is in front of the other person/dog so we fit on the sidewalk. Odds are the conversation is with the dog not each other. (Did I say we’ve been married almost 30 years?)

The key to being comfortable is in the “we” for us. Is it perfect? No. But because the subject of hearing loss is comfortable for us, it’s not the elephant in the room and together we can have better communication outcomes for the next 30 years. Well at least when it comes to hearing loss.

In the end…

The more we know, the more we can successfully manage communication situations.. Have those talks with your hearing partner! There will always be new situations that throw us off. Talking through those rough spots together will smooth out the process in the future. Explore accommodation options together. The more both partners know about accommodations, the easier it will be to manage situations. 

Finding others with hearing loss is a great way to trade ideas, tips, tricks, technology and so on. It’s also wonderful to have friends with hearing loss to compare notes. There are 48 million people with hearing loss out there so we are not alone. Open up about your hearing loss with someone, share your stories. Let’s make hearing loss more known and acceptable.

If something resonated with you in this post, share it with someone meaningful.

Want to explore more? Check out Being Proactive with Hearing Loss. It might also be a good time to read Hearing Loss and Hearing Partners.

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Categories
Accessibility Advocacy Connections Hard of Hearing Hearing Loss Sensory Loss

Meaningful Connections with People

Connections spread awareness. We touch each other’s lives, then go on to share what we’ve learned. The Hard of Hearing tribe is a giant web of people connected together. 

Chelle: There are so many great connections to make within the Hard of Hearing community. I’m so glad I had the urge to search out others like me, my tribe, because it gave me my place in life.  In the mid/late 90’s I found the SayWhatClub (SWC). I had an email full of people who got it and introduced me to accommodations, life skills and technology. I went on to meet them at Camp Colorado in 1998. About 30 of us met at Rocky Mountain National Park and hung out together for about 4 days. No one felt left out, we connected over hikes, campfires and tours. I’m still connected to several people from there.

Chelle (5th from the left): 1998 SayWhatClub gathering at Rocky Mountain National Park.

Hearing loss conventions are great for making connections. It’s all about the people for me, though I enjoy the workshops too. My first convention was the SWC con in Salt Lake in 2012. Their cons are small and intimate so I got to know just about everyone. I made several, lifelong, friends here. Then I went on to the Hearing Loss Association of America (HLAA) convention. They are bigger with more choices in workshops, I love their exhibit hall. I met several wonderful people there. We may not talk often but when we need something, we’re there for each other. Another great group of people, the Association of Late Deafened Adults (ALDA). Karaoke with HoH/deaf friends will rock your world at ALDA cons. If I could, I’d attend all 3 every year. Guess what? They are all 3 coming up!

  • HLAA con June 23 – 25, 2022 in Tampa, FL
  • SWC con August 10 – 13, 2022 in Nashville, TN
  • ALDA con October 19 – 23, 2022 in San Diego, CA
Chelle (far right) and a few of her Utah people.

Supporting the hearing loss community in as many forms as possible is another passion. I’ve attended many other HLAA chapter meetings, not just my own in Salt Lake City. It’s wonderful that most are online these days so we can join from anywhere. I joined the Audible Talkers Toastmasters club out of Arizona, also online and accessible to those with hearing loss. I’ve been there for two years and it has proved to be a valuable experience. I met more super people here.

Challenge yourself to know others with hearing loss, be it a local support group, online meetings, workshops, classes… whatever! They are some of the best people you’ll meet and there’s nothing like finding your tribe.

2015 SayWhatClub Convention in San Antonio, Texas. L to R: Robyn Carter, Me, and Vicki Turner, of Turner Reporting & Captioning Services.

Robyn lives in New Zealand and visited me when I lived in Germany. Vicki, who provided open captions for a live theatre event at the con, had connected with Robyn while she was in New Zealand. Small world!

Michele: Choosing connection over isolation is the way to go!

My grandma, who was deaf and taught me how to finger spell.

Family: My first meaningful person-to-person connection linked to hearing loss was with my grandmother. She lost her hearing in much the same way I did, and from the same young age. She was a lipreader who taught me how to finger spell (the extent of sign language she knew) as a child. When all else failed I would write to her. I am lucky that even before my own hearing loss diagnosis (grade school), I had a positive example of someone very capable in life in spite of their hearing loss. Eighteen years was not nearly enough time with her, and I miss her every day.

2014 SayWhatClub (SWC) Convention in Madison, Wisconsin: Leslie Cotter (Left) is a fellow Minnesotan who I met in 2008 when I joined SWC. We were fellow volunteers and met for the first time in person in 2009 when she invited me down to the cities to meet Cathy Hilden who was in town.

Chelle Wyatt (Middle) rejoined SWC in 2009 and we became online friend and fellow volunteers. We didn’t meet in person until 2014. We’ve visit each other regularly over the years since.

Steve Nye (Right) joined SWC in 2013 and we met in person at 2014 convention and a few cons since.

Peers: When I began connecting with people in the Hard of Hearing community online—unfortunately, not until my 40s—I was amazed. Having a common focus shrank the world down to a small international group of people that I crossed paths with in many different places.

I met Julia Stepp in person for the first time at a Salt Lake City HLAA Chapter meeting where she provided CART. Julia has been the CART provider for several of our SayWhatClub Conventions and will be in Nashville this year!

That led to finding a peer support group (SayWhatClub-SWC was my first) where connections happen naturally. Many connections turn into lifelong friendships, and that is how I met Chelle. Information, experiences, and invitations shared by peers led to other connections. I met Julia while visiting Chelle, and I also connected with some other great Utah people. When their Division of Services of the Deaf and Hard of Hearing (DSDHH) opened up their online classes during the Covid lockdown, I made new connections during Speech Reading and Living with Hearing Loss classes.

Volunteering: After joining the SWC in 2008, I was asked to volunteer almost immediately. While writing for the newsletter and blog, and searching for content for the SWC public Facebook page, I connected with people and information that I probably would not have found otherwise.

Boise, Idaho: 2016 SayWhatClub Convention.
In 2018, Liza Sylvestre (second from the right), an artist with hearing loss, invited me and more than 50 others to take part in a Sensory Loss Symposium at the Weisman Art Museum in Minneapolis. I learn so much when I say “YES!” to participating and connecting. It was an amazing experience!

Also, researching to find solutions for newcomers on the SWC email lists led to some of my most meaningful connections, both brief and years-long. Volunteering resulted in helping myself even more than those I was trying to support. And, it kept me motivated to continue to learn and connect even when progressive hearing loss got me down.  

Movers and Shakers: There is so much creative energy in the Hard of Hearing community to connect with. I am continually initiating contact to find out more about artists, writers, advocates, communicators, service providers, and emerging technology developers who are doing great hearing loss-related work. Most of the responses I receive are from the actual creative person and it makes for some interesting email and messaging exchanges and even can lead to friendship.

Julia: “Hearing loss affects every family member, especially when it comes to communication. Communication is the key to staying connected. There are many tools that can help you stay connected. Most families don’t find these tools until the connection is a struggle and everyone is beyond frustrated. My hope is that this finds folks before the connection is damaged.”

Julia: Boy, meaningful connections. What would my life be without them? I would not have known how to navigate hearing loss myths with my own family. My family would not have the communication tools that they use every day. My kids would not have the understanding of different needs for those with hearing loss that they do. I would not be able to pass on to others the importance of family/friend support and that they too need to be in the know. 

I wouldn’t have met two thought provoking, self-advocating ladies to start a business with.

Don’t stop living your life. Learn about new tools. Make more friends and share advice. Hearing loss and Hard of Hearing needs are different for each individual. But shared experiences help us stay connected. Everyone needs a shoulder at times. Even those with years of hearing loss experience can learn new uses for that tool box just by being connected to others who have an experience to share. Get out. Share. Grow.

Join Hearing Loss LIVE! Tuesday, June 7th and let’s get connected with Talk About It Tuesday! An open discussion about hearing loss, online via Zoom with captions.

Watch our companion podcast here.

If you liked this post, try Finding Your Tribe because that’s where you find some of your most valuable connections. Connect better with your family, read Hearing Loss: Family and Communication.