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Accessibility Advocacy ASR (Automatic Speech Recognition) Captioning CART (live captioning) Cochlear Implants Communication Practices Connections Emotions, Psychological Stress Hearing Aids Hearing Loss Live Theatre Public Advocacy Speechreading/Lipreading Uncategorized

Hearing Loss and Hearing Partners

Written by Julia Stepp

Who is responsible for communication when hearing loss is part of your family dynamics? The person with the hearing loss, right?

Let me ask you; as the hearing partner are you saying any of the following:

  • You are purposely ignoring me.
  • Turn that damn TV down!
  • Why are you yelling at me?
  • What do you mean the phone isn’t working right? I hear fine.
  • Are you serious? Do you really think I said that?
  • What do you mean you don’t want to go out with our friends on Friday nights?
  • I think you need to see the doctor, something is not right with you mentally.
  • Is it just hearing loss? Oh no biggie then. We’ll just get some hearing aids. Just stick’em on and good to go.
  • We just spent $8000 on hearing aids, what do you mean you still can’t hear me?

One that has stuck with me over the years during Hard of Hearing workshops: Your hearing loss is now our life.

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.

Some simple things that every hearing partner/family member can do:

  • Get involved from the beginning. There will be a period of time my friend Sue refers to as the “I’m not there yet” statement. When they’re not there yet, you can still work staying connected.
  • Stop talking from another room. This is good practice for everywhere, including your job, if you’ve gone back to the office.
  • Stop talking with food in your mouth. Ew. Just. Ew.
  • Make sure you’re facing them. This helps them use body language to fit with what is being said. It also helps you to see their facial expressions to make sure they understand what you are saying. 

The more important the conversation the better the outcome will be if you can follow these simple rules.

The list above is good practice to use with everyone, not just those with hearing loss. You can practice it over and over everywhere you go because one in five people you meet will have a hearing loss. Plus, practicing everywhere you go makes it a habit.

There is evidence that shows getting hearing aids from the onset of a hearing loss have better outcomes. BUT making someone get hearing aids so they can hear YOU will not work as well as you’d like unless you change some communication habits. You will be disappointed. When you are both ready for hearing aids, be involved. Keep the connection:

  • Go to the Audiologist with your partner. Learn what hearing aids can and cannot do. Help keep a diary of sounds and what your partner would like to hear. 
  • Find out why T-coils are important. Find out where loops have been installed to use with T-coils
  • Learn how assistive listening devices work. We all love our bluetooth, right? There are ways to use your Bluetooth with personal devices. There’s also FM systems and WiFi assistive listening options. Look for the Assistive Listening Device (ALD) symbol in venues.
  • Learn more about caption options. Apps on phones and computers, television, landlines phones, and public venues, office meetings.
  • Loops, ALDs and captions can all be used even before the person is ready for hearing aids. 
  • If certain environments are no longer doable, keep a list and brainstorm ideas on how to make it work. If Friday night is date night with friends and your local hangout is too loud, start looking for a new hang out. And if that Friday night date night is a quiet home dinner for two. That’s okay too.

And something I cannot stress enough. JOIN A SUPPORT GROUP. Support groups for hearing loss allow the person with hearing loss to connect to others with shared experience. Support groups are where hearing partners can learn how to better support hearing loss too. Don’t let the hearing loss be your life. Live life better with hearing loss. 

Another important list that has helped my family is to know signs of hearing loss. 

  • Repeating questions you have answered (them making sure they heard right)
  • “What?” A lot of whats or huhs or say that again.
  • TV is becoming louder and louder.
  • Trouble hearing on a phone.
  • Not answering questions you ask, or answering incorrectly.

I watched my grandma’s friends and family misdiagnose her as being “senile” or showing signs of “dementia.” It was during a class provided at an HLAA chapter meeting on how to recognize symptoms of dementia that helped me realize that grandma did not have dementia. She needed her hearing evaluated and more life skills to help her participate in all her extra-curricular activities

Because I decided I should go to the Audiologist with grandma, we discovered she had been using lipreading to pass her hearing tests.

Even though I knew better, five years later I misdiagnosed dementia vs hearing loss in my own spouse. (BTW, he’s not there yet. My husband may never “be there.”) He has a mild hearing loss and still lives a full life at 73. We have practiced communication skills well over 20 years. This is  thanks to the fact that I work with and have many friends with hearing loss. No one is perfect and we all slip up. Daily. However, we own it when we don’t follow the rules and move on. Usually.

Octoberfest at Snowbird this past fall.

Keep connected. Don’t let communication with hearing loss manage your life. Manage the hearing loss instead. Learn, grow and most of all LIVE your life.

PS: JOIN A SUPPORT GROUP! Find out why with us.

If you liked this post, try Hearing Small Voices because kids are hard to hearing. Also we wrote early on about Hearing Loss: Family and Communication.

(No companion podcast.)

Categories
Accessibility Advocacy CART (live captioning) Emotions, Psychological Stress Hard of Hearing Hearing Loss Shame/Stigma/Denial Vulnerability

Vulnerability

Michele: Emily Nagoski, who has a PhD in health behavior, talks about the fear of uncomfortable feelings, which is another way to say the fear of vulnerability: “One of the things I say over and over… is that feelings are tunnels. You have to go through the darkness to get to the light at the end… You’ve got to work all the way through it… [I] grew up in a family where uncomfortable feelings were not allowed, and… [I was] pretty sure that uncomfortable feelings [were more like] caves with bats and rats and snakes and a river of poison.

Like Emily, I grew up in a family where vulnerability was demonstrated as a bad thing—something to avoid at all costs—and asking for help meant that you were weak. It took me far too long to realize that the complete opposite is true.

By avoiding uncomfortable feelings and situations, aka vulnerability, you rob yourself of the opportunity to move through it. But when you allow yourself to be vulnerable, you can move through any uncomfortable or difficult situation to figure out how to manage and take control of it. By sitting within your own discomfort over and over, you will reach a point where you no longer dread what makes you uncomfortable. Confronting uncomfortable feelings teaches you to manage the emotional and psychological aspects of hearing loss.

Another good quote: “When you shut down vulnerability, you shut down opportunity.” ~Gay Gaddis

Avoiding vulnerability is part of what causes people with hearing loss to isolate themselves. Shame thrives in isolation. When you haven’t truly accepted your hearing loss, defined your communication needs, or acquired the skill to handle situations where you feel vulnerable, hearing loss will continue to paralyze you.

The minute I embraced being vulnerable, my life changed. 

Since there seemed to be no one to teach me how to live in the world with hearing loss, I decided it was up to me to teach myself. I had no idea how to even tell people I couldn’t hear or what to call myself. Was I deaf, hard of hearing, hearing impaired? 

That is where I started. I psyched myself up and went to an out-of-the-way mall, going into every single store to practice how to tell people I couldn’t hear. I discovered labels don’t work—they don’t provide any useful information—and I had no idea of my own needs, which is required in order to tell others what I needed from them. 

My truth is that I am a lipreader and I need to see people speak in order to hear them. However, lipreading wasn’t always going to work, so I also needed to know what to do when it didn’t work.

Intentionally exposing myself to what I feared, and facing those fears in the context of experimentation, to find an effective way to inform about my hearing loss, I became desensitized to my own discomfort. Equally important was learning to define my own needs and truth.

Hard of Hearing (HoH) people need to find skill, knowledge, and confidence to combat the natural inclination to isolate themselves. Vulnerability is where those things will be found and is what will allow them to adapt to life with hearing loss. 

Chelle: Big changes in our hearing leads to life changes, turning life upside down. There’s a lot of pain that goes with the changes. I lost friends who wouldn’t/couldn’t switch from the phone to the email/text. I couldn’t cope in the salon anymore with all the excess noise and lost the one job I thought I’d be doing until I was 80 years old. Any kind of large gathering was torture. So I stayed home a lot because it was easier than:

  • Making another friend who might also decide I was too much trouble as a HoH.
  • Losing another job I might try to find.
  • Attending events, not understanding the speakers. Being the lone person sitting in a sea of people who were laughing when I didn’t understand any of it.

It was easier to stay home and watch DVDs. It was easier to read a book or be on the computer where I didn’t have to hear. However, it wasn’t where I really wanted to be. 

I isolated myself but reached out to my tribe. I joined the SayWhatClub again, because it was email and I now had several new friends who adored email too. I attended HLAA meetings in person, they had CART (Communication Access Realtime Translation) at every meeting and there I could participate. I felt less alone with them. As I shied away from the hearing world, my HoH world grew and eventually my courage in the hearing world expanded too. 

Thank goodness for my tribe. They helped me be who I was meant to be (in more ways than one). Vulnerability was me asking for CART the first time for a workshop, outside the HoH community, that I wanted to attend. Because I had support, I was able to push past the initial “no” for CART and persisted until I got it. That small win gave me courage to continue to make my communication needs known. I grew in confidence little by little.

Several years ago, Michele and I worked together on the social media team while volunteering for the SWC. We ran across Brene Brown’s TED Talk, The Power of Vulnerability. Her talk started with shame which many of us with hearing loss experience. We feel between worlds, not hearing, not Deaf. We are neither here nor there, lost somewhere in the middle. We have no place to connect. Brene talked about vulnerability and Michele and I understood this is what makes us strong. Taking chances brought us back and connected us to life again.

Years later, I read Brene Brown’s book, The Gift of Imperfection. I have notes all over the place in that book in regards to hearing loss! I highly recommend reading this book if you need to break through the shame and vulnerability barriers.

Julia: Protection. That is what comes to mind when I hear the word vulnerability. It means we must at all cost protect those we care for most. But do we take it too far? Only you and your hearing loss partner can decide how to protect each other without causing further vulnerability. But let me ask you, hearing partner, are you answering questions that they could answer for themselves before hearing loss? Are you taking control of situations they may have handled themselves in the past? Are you allowing them to stay home alone while you continue the same lifestyle you shared before the hearing loss?

Have you asked them if this is what they want? 

As a CART provider I see a different side of vulnerability. And guess what? Business owners, you are causing unnecessary vulnerability. If an employee, student, or consumer approaches you about needing live captioning, don’t automatically say “no.” This is someone who has stepped out of their comfort zone and is in a vulnerable spot. Before you decide “no”, reach out and talk with a CART/Captioning company and find out what you can about how to offer the accommodation. And yes CART is an equal access accommodation under ADA.

Stepping out of your comfort zone is scary. Saying yes when everything in your being is telling you to say no takes courage. You might even stumble a time or two, but that’s okay, because you learn some valuable things from every misstep along the way.

If you need help and encouragement to deal with the uncomfortable feeling of being vulnerable, contact us at Hearing Loss LIVE!. We’ve been there and love helping others in the ways we needed help in our own journey.

You don’t have to let hearing loss paralyze and isolate you.

View our companion podcast here.

If you liked this post, try Shame and the Emotional Side of Hearing Loss.

Categories
Emotions, Psychological Stress Hard of Hearing Hearing Loss Shame/Stigma/Denial

The Emotional Side of Hearing Loss

Hearing loss comes with a cycle of emotions—sadness, grief, anger, depression, pain of isolation, and feeling panicked at not being able to do things in exactly the same way as you used to, or not all. One of the biggest things most people miss about hearing loss is how emotional it is. 

Big moments—a loss that is glaringly and painfully apparent—and day-to-day challenges make life with hearing loss an ongoing rollercoaster of emotions.

Some Emotional Aspects of Hearing Loss:

  • Losing the ability to communicate in conventional ways, and having family and friends fail to accommodate you in the alternative ways you have requested. 
  • Being left out is a given, and it makes you feel insignificant.
  • Self-esteem – hearing loss changes the way you interact with others and makes you feel as if you’ve lost a part of your identity. Suddenly losing the confidence you’ve spent a lifetime building has deep emotional and psychological ramifications.
  • Panic becomes a knee-jerk reaction to any situation you have no idea of how to respond or handle.
  • Stress becomes a daily battle. There likely will be a point in your day when communication breaks down or you are unaware of what is going on around you. Being on pins on needles waiting for the inevitable is so stressful.
  • Sense of failure when…
    • Hearing devices don’t work as well as you want/expect them to, or at all.
    • You can longer participate and contribute in the way you want due to lack of accommodation.
    • You feel like you are losing your independence.

The ongoing emotional and psychological trauma of hearing loss is often not adequately addressed during the process of seeing a doctor and audiologist, having a hearing test, being fitted with hearing aids, or receiving cochlear implants.

The HoH need emotional support, counsel, and/or therapy to deal with how hearing loss changes your life. They need instruction on how to take control so they are not always at the mercy of their emotions.

Chelle: Sudden onset of tinnitus was traumatic. That unwelcome high pitched squeal invaded my peace, ruining my sleep. I went to an ENT who told me, “You have tinnitus and you have to learn to live with it.” That was it, no suggestions or advice. We look to our medical providers as a source of help. If they can’t help us, who can? I did not see how I would ever be able to sleep again. Any resource would have been helpful, a pamphlet, support group… anything. Instead I waded through it on my own. 

One morning my resolve rose up and I decided I would NOT let this ruin my life. I was 18 years old and I still had plenty to do in my life! The cartoon below represents how I felt, I was not going to let tinnitus be more annoying than me. 

Getting hearing aids at 23 years old felt odd. My husband at the time used my hearing loss to his advantage. He would ask me about buying something from across the house. If I didn’t answer, it must mean it was okay to buy it. He was not nice about repeating and constantly turned off the captions because they were in the way. Because of him I learned to fake it, or bluff. If my own husband thought it was such a pain in the ass, what must other people think? It took me a few years after divorcing him to learn most people were okay with my communication needs. 

Big drops in hearing are always a hurdle. This has happened twice in my life. It means losing parts of your old life and that hurts! There’s a grieving period for that. Losing phone calls, losing hearing from other rooms, not hearing my kids in school plays. Losing music hurts. In the 80’s I could hear all musical instruments and sounds even though I misunderstood lyrics. Now when I hear an 80’s song, I know I’m not hearing the whole song. Pieces are missing, pieces my brain can fill in but there’s some grief every time that happens. Another piece lost.

I get mad sometimes. We hear anger is wrong but I beg to differ. Sometimes it’s needed to get the point across. Anger is telling us something is wrong. Don’t tell me “never mind” or you’ll see my anger. It’s unfair to be denied access to communication. I try my best to hear. I didn’t ask for this hearing loss. Besides that, were you facing me when you said it? How much background noise was there? Did you get my attention before talking? It’s usually not my fault for not hearing.

Julia: As a hearing partner you will have grief and different emotions arise. Hearing loss will affect your relationship and communication. Not if, not when, not maybe. Flat out it will. Respect the emotions of your partner and their hearing loss experience. But take care of your emotions, too. If you don’t, resentment will set in. 

I tell the story in an earlier blog when it became obvious communication with my grandmother changed and how that affected me, and how it dawned on me that it affected her in a different way. I can’t say how the experience may have gone had I not learned years earlier that this would happen and where I could turn to for support. So take a class with your partner and learn about hearing loss. Join a support group together and/or separately.

Michele: I have many stories from my own life, of heart-cracking moments that sneak up on you and take you by surprise, but for this week’s topic, I’m going to share a story from a dear friend and hearing loss peer. 

I remember reading this story when it was written, over ten years ago, thinking how perfectly it takes you inside of a moment of raw emotion… a moment when hearing loss breaks your heart all over again.

I Felt My Heart Crack: I lost my hearing, as most of you know, about close to 20 years ago. I’ve grieved, cried, come to terms, got help, learned to live inside of it and moved on. Or, so I thought.

Yesterday, my husband forwarded me an email that was sent to him. He keeps up with all of our old high school friends, and is considered a contact with them because he also runs our alumni website. So the friend who contacted him, sent the email to him asking him to give it to me. Here is what it said:

“We would be honored to have you and your husband attend a pool party at my home. Several of the old choir members will attend. We need to sing, and fellowship for one more time. I need you to sing the high notes for me, as in the past. Call me at Home. I love you, can’t wait to hear from you.”

So, as you see, I used to sing. A lot, and well. This friend, and I, and a few more people were in our school choir, and also in a small elite singing group. We were good, real good. 

So, I read this email and felt my heart crack. I can’t sing anymore. I can’t sing the high notes. Sometimes I can’t even hear them, depends on all the hearing loss variables that exist in my life. Even with the CI’s, I’ve pretty much lost music as far as being able to hear it correctly and on key. I can identify and hear instrumentals pretty clearly but add lyrics in and it’s still not easy. My singing days are over. 

I haven’t seen this friend since high school. She doesn’t know what’s happened to me. I wrote her back, and told her. I declined the invitation. My husband doesn’t get it, why don’t I want to still go? I can’t explain why my heart is broken, by just thinking about this, let alone having to deal with it in person and be unable to participate. He just doesn’t get it, he wants to go anyway, and I just can’t stop crying.

I can’t believe something from a thousand years ago has popped up in my face and is causing all these emotions. I surely thought I was over feeling this way about my hearing loss. Like the energizer bunny, the losses just keep on going……

No matter how much hard work we’ve done to reach a point of acceptance and “moving on”, there are always deeply emotional losses lurking under the surface just waiting to be triggered. And, no matter how much our hearing partners try, they will never understand unless they experience hearing loss themselves. 

The day-to-day challenges can be as overwhelming as the big ones that slap us in the face. And we aren’t the only ones affected by hearing loss, our family and friends have emotional adjustments of their own.

Until the emotional and psychological side of hearing loss becomes a part of diagnosis and treatment, millions of HoH people will continue to struggle. It takes a lot of hard work to build the skill, knowledge, and awareness needed to live fully with hearing loss. Managing our hearing loss isn’t something we should have to figure out on our own.

Watch our companion podcast on The Emotional Side of Hearing Loss.

If you liked this post, try Hearing Loss: Family and Communication because we are often emotional with our family. Also try Misconceptions because that’s what often trips us up.