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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
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.