Hearing loss can be lonely. The world feels against you, sometimes your family too. It’s a deep, dark pit of quiet (and tinnitus). If you’re lucky, you wander across a support group like the SayWhatClub and start to feel a little less like a freak. You begin feeling at home with a bunch of new friends, making meaningful connections.
After another big hearing drop in 2009, I re-joined the SayWhatClub. Six months after being on the list, someone asked me to volunteer. I hadn’t thought about it, but why not? It wasn’t like I had anything else going on. I had just quit doing hair after 20 something years because I was deaf in noise. My self-confidence was at an all time low. I was cleaning a few houses (not much hearing involved with cleaning), and I had nowhere else to go so yes, why not give of my time.
Point 1: Volunteering opens up other worlds, the 2nd phase of leaving isolation behind.
I became a list representative for a SWC email list. I was introduced to another part of the organization, meeting more who were hard of hearing and gaining new friends. Friends were important because I’d already lost a few because of my hearing loss (I couldn’t “chat” endlessly on the phone anymore). I appreciated my fellow volunteers just as much as I did the others on my email list and over time, one of those volunteers became a very good, dear friend. SWC became my safe place for communication, it’s a written world with no hearing involved.
Point 2: It kept me busy and stopped my negative thinking cycle.
Being a list rep gave me back some of the responsibility I had been missing. I popped into email often to make sure the list was moving along smoothly. I welcomed new people to the list, trying to make sure their questions were answered hoping to pass on the same sense of home I felt. Occasionally I helped settle differences of opinion, in the spirit of teamwork. It kept me busy and kept my mind off my own troubles.
When the SayWhatClub held a convention in town, I volunteered for that too. I enjoyed being a part of building the con and putting faces to names, gathering more friends in the hearing loss world.
Point 3: Volunteering for SWC gave my own hearing loss a sense of purpose.
Over time, my hearing loss became less of a burden and started to feel like experience to share; on the email list, in the List Rep committee, conventions and writing on the SWC blog. I became a professional full time volunteer, I joked, as I became the List Rep chair. I was reaching out more into the hearing loss world for convention purposes, meeting more people. My self-confidence built back up. I was far from isolated and my hearing loss was asset in this world.
Point 4: Learn new skills while volunteering.
While stepping into my roles, other volunteers with experience supported me along the way. I wasn’t sure about being List Rep chair but the former chair was on hand to answer questions and offer advice when needed. The same with the convention committee, I knew nothing coming in but had the will to learn. I learned to reach out further into the hearing loss world, looking for guest speakers and sponsors. It was all valuable experience and I learned to be a leader again.
Point 5: It looks good on the resume.
A local part-time job opened at the state Deaf and Hard of Hearing Center as a Hard of Hearing Assistant. The job required teaching classes and giving presentations on hearing loss. I almost didn’t apply for a few reasons. I thrived in the online world. Also, I was still trying to find my way back into doing hair, clinging to my old life, should I give up on that? What the heck I decided, maybe I could do both hair and hearing loss part time so I applied.
Which required writing a resume, the first in a long, long time. Adding information to the resume made me realize I had more experience than I thought, thanks to SWC. I learned I could organize events. During the two years I was off from doing hair, I built new skills and worked well with others. Because I hadn’t been idle, I got the job. I worked part time for 5 years, and in January 2018, it became a full time position.
The hearing loss world gave me a place to belong. I found my tribe, across the United States and right here in Utah. I never would have pictured myself ‘here’ nine years ago when I was struggling after another big drop in hearing. And ‘here I am in a whole new life! I have let go of doing hair almost entirely. Now I embrace the hearing loss community. This is where I belong, and SWC helped me get there.
I encourage others to volunteer, especially if you’re in that pit of isolation. The SayWhatClub emphasizes the benefits of volunteering in its Mission Statement. We understand that helping others reduces feelings of isolation, frustration and despair, while enhancing feelings of self-concept and optimism. Open yourself up, and see where it leads. Other SWC volunteers will support you in learning new skills. What do you want to learn? Where might you go? There’s lots of opportunity in SWC.
Some areas SWC needs volunteer help
The SWC website committee needs people to keep the webpage current by checking links and editing pages.
Help the Hospitality Committee welcome new people into SWC who inquire on the website.
The List Representative Committee could use help on the Facebook groups, and if you’re on an email list already, inquire if they might need help. Two of the lists are looking for new List Representatives.
The Social Media Committee is looking for people to help with the main SWC Facebook page, making memes for SWC, writing on the blog, and would love to have someone make our Twitter account active again.
Remember no experience required, just a willingness to learn.
Resilience has been a hot topic over the past few years. If you google resilience you’ll find a zillion articles. Everyone is talking about it. Recently I came across an article in the New York Times that offered a twist on resilience. I urge you to read it. The gist of the article by Kristin Wong, was that people could use adversity to transform their lives, based on concepts revealed in the book,Type R: Transformative Resilience for Thriving in a Turbulent World by Ama and Stephanie Marston who have studied resilience over several decades.
Wong explains that resilience is the ability to bounce back after adversity, while transformative resilience is the process of changing your life because ofadversity. It’s not about getting over a loss and moving on, or bouncing back, so to speak. It’s about facing a conflict and coming out with new skills and knowledge that change your life.
“Adversity usually propels us forward toward new understanding.” – Rumi
When I first began writing this article, I had planned on listing ways of bouncing back after hearing loss, but I found the ideas presented in the NYT article far more compelling. Though Wong uses the example of a woman in debt, I instantly recognized my own transformative struggle through the six steps after losing my hearing.
The six steps.
Stage 1 – Comfort Zone.
Stephanie Marston describes stage one as the period of calm before personal catastrophe hits. We all experience something bad in life, but before that we mostly go about life making happy plans for the future– and this is a good thing, she says, because we might need to draw strength from our comfort zone later on. However, staying in comfort zones too long can make us complacent. We don’t grow.
My childhood was good in many ways– it wasn’t perfect by any means—but I have many happy memories that I draw from even now. I could hear back then, and I loved making music with my piano and flute. I spent a lot of time outdoors in the woods and at the beach we lived near. My father read to me at night if he was home. After I learned to read, I devoured books by the dozens. By high school graduation, I had a rough outline of my life plan. Hearing loss wasn’t part of it.
“If the path before you is clear, you’re probably on someone else’s.” Joseph Campbell
Stage 2 – Turbulence.
Stage two is the discovery that something is going very wrong. “The familiar is shattered, and we can no longer count on the reality we’ve built for ourselves,” Stephanie Marston said. This is an unexpected event that changes the course of your life.
Right around the time I started college, I found out I had hearing loss. A lot of people who have hearing loss go to college and breeze right through, but this news knocked me flat. Losing my hearing didn’t fit in with my life plans. My doctors didn’t know what was causing the hearing loss. I didn’t know how deaf I would become. I didn’t know anyone who wore hearing aids. It sounds funny now, but potentially losing music was a huge concern.
When people are in stage two, and have just been dealt a crippling blow of some kind, Marston suggests seeking support from family and friends. My family and friends (if I told them) were as bewildered as me about how to deal with hearing loss. There was no support. Today, there are several deaf organizations, including the SayWhatClub that offers peer-to-peer online support. Back then, there was nothing.
Aside from college, most people in their twenties date. Young people worry about their sex appeal almost as much as their future careers. We rarely see disabled people in magazines or on TV, and if we do, it’s usually a touching news piece about overcoming adversity; it’s never about sexy. Hollywood bodies are photo shopped to the point of unearthly flawlessness. Hearing devices, if worn, are brushed out. People with hearing loss understand that the rest of the world sees us as flawed. “Hearing-Impaired.” It can undermine your self-esteem.
At first, I did what many people do when going deaf. I ignored it.
“Denial can be comforting but it’s not a place you can stay in for very long.” Stephanie Marston
Stage 3 – Chaos and grief.
This is the stage when you’re in total upheaval due to the unexpected turbulent event. You didn’t plan for it, so you don’t know how to deal with it. People sometimes make poor decisions based on panic and fear. Depending on the event, you may be going through the five stages of grief. Marston describes it as being in a no-man’s land. You can’t go back to your comfort zone, because it no longer exists, but you haven’t established a new comfort zone.
Years ago, during an SWC convention in Seattle a psychologist spoke to us about the grief process and hearing loss. Hearing loss is not about losing your hearing, she said, it’s about all those other things you lose in the process of losing your hearing. A thousand little sounds you can no longer hear remind you of it. Every. Single. Day.
The problem with a gradual loss is that the grieving never stops. I’m not saying sudden loss is easier. It isn’t. But with the unknown factor of how bad it will get, and the long drawn out loss bit by bit, it is hard to get ahead of the grief. Just when you get used to a new low, you’re hit with more loss. For me, it was cyclical. I had many long stretches of feeling OK with where my hearing was, but the uncertainty was always in the back of my mind. When will I lose more hearing? How long will this level of hearing last? How deaf will I get, and what will I do if I wake up completely deaf tomorrow? When I was sad, I did a good job of burying it most the time, but occasionally it hit me hard.
We grow up believing that if we make all the right choices, our lives will be great. Then something bad happens, and we realize that having control over our lives is a myth. No one ever decides to lose their hearing. Marston claims that in this stage we can sometimes get carried away with what-if questions. Support from friends and family can keep us grounded and more focused on reality instead of all the things we imagine could go wrong.
“When you’re falling, dive.” Joseph Campbell
Stage 4. A Catalyst emerges.
In this stage, you have an epiphany of some kind that can point you in the right direction. Somehow you come to the realization that you can change, and this propels you forward into new directions.
I have written about my epiphany before. Years ago, I was skiing with a friend one winter afternoon when our chair lift stalled. I noticed a skier zip over the crest of the ridge above. He navigated every mogul perfectly with ease, though there was something just a little odd about his movements. He skied toward the chair lift, and then right beneath me.
He had no legs.
I sat there transfixed thinking– If this guy can ski so well on a sit-ski with no legs, is he DIS-abled? It was his skill that set him apart, not his disability. One thought led to another until I wondered, Am I disabled? Up until that point, I had been using the term “hearing-impaired” to describe my hearing loss. I understood in that moment that disability or “impairment” is a state of mind.
From that day on, I stopped thinking of myself as “hearing- impaired,” or less than. I am a whole person who meets hearing challenges by using special technology, and other adaptive skills like lip reading. I’m not impaired.
Marston claims that in this stage when the epiphany happens, it changes your mindset. The epiphany can’t be forced. For example, I can tell others with hearing loss this story, but it won’t have the same impact on them, because it’s not their epiphany. Sometimes the epiphany is a gradual understanding over a period of time.
“We must let go of the life we have planned so as to accept the life that is waiting for us.” Joseph Campbell
Stage 5– Experimenting with Change.
This is the stage when you begin to change your behaviors and experiment with a new identity. You try things out to see what works and what doesn’t. You push against the limits of your comfort zone.
“We can’t necessarily change the circumstances we find ourselves in, but what we do have control over and what we can change is our attitude about it.” Marston
I joined the Hearing Loss Association of America HLAA, which is a great organization. HLAA didn’t work out so well for me, because of schedule conflicts. However, it was during one of the few HLAA chapter meetings I could attend, that I met Alan Sprague, a founding member of the SayWhatClub (SWC). With SWC, I didn’t have to go to meetings. I could talk to others who had hearing loss while sitting at my computer.
Through their encouragement, I became more assertive about my hearing loss. Whereas earlier, I had been shy about telling people I couldn’t hear, in this stage I became almost obnoxious about it. I didn’t care what others thought. Either you accepted me and my hearing loss, or you didn’t. I didn’t choose to go deaf, and I have no control over it. If someone couldn’t deal with it, I began to see it as their problem– a character flaw.
I learned everything I could about hearing loss and the various tools and technologies people used to deal with it, as well as American Sign Language. I became very open and direct about my hearing loss and I began asking for access.
Stage 6 – a new comfort zone
“If you are your authentic self, you have no competition.” Joseph Campbell.
Marston claims a new identity emerges in stage six. After the stage of experimenting, you begin to feel comfortable with your new identity. For me it wasn’t just acceptance, but pride in who I had become, and what I overcame to get there. During this stage, I began to feel pride that I was able to meet the daily challenges of hearing loss in a more assertive and organized way. I no longer felt like a victim of hearing loss. I had taken control.
Identity is a big deal when you go deaf, maybe because the deaf community is a bit fractured. I think most late-deafened people are confused by the many labels used for deafness and hearing loss at first. I tried out all the different labels– hearing-impaired, deaf, hard-of-hearing, late-deafened. Then, a few years ago I stopped labeling myself. I didn’t want to be boxed in by a label, or someone else’s idea of what that label meant. Hearing loss is something that happened to me. It’s not who I am.
Of all the questions people have after they go deaf, how to explain it to others, and the labels we use to describe our hearing, is one of the most discussed topics in any chat group for people with hearing loss. Deafness is invisible. There is no right or wrong when it comes to self-labeling and identity.
This picture is a perfect example of stage six. I was so happy about my cochlear implant that I wanted to show my friends. I posted pictures of it on Facebook. Many people who aren’t in the deaf/hard-of-hearing community think the entire device is inside and that you get a CI for vanity reasons, which isn’t true. You wear a processor on your ear with a magnetic headpiece that attaches to your head. People get cochlear implants when they are severely to profoundly deafened and can no longer benefit from hearing aids. It’s not a vanity thing. I don’t care if people see my processor. I am comfortable with people knowing I can’t hear without it.
Marston claims that, “after the chaos we will feel motivated to contribute to a less chaotic world.” We give back. In my case, that took the form of offering peer support through the SayWhatClub, and other hearing loss organizations. I feel compelled to be there for others, because no one was there for me when I first lost my hearing.
I’m not sure what Marston would say about this, but my gut tells me that Transformative Resilience isn’t something we necessarily need to cultivate. Like the five stages of grief, the stages of transformation happen regardless of what we do, and may not always happen linearly. Like the stages of grief, people can get stuck along the way. I didn’t move through these stages of transformation neatly at all. For me, it was messy, and I got stuck more than a few times. I regressed after hearing loss setbacks and then moved forward erratically.
By following the advice of those suggesting attitude changes, cultivating gratefulness, practicing meditation and exercising, etc., we might move more smoothly through stages one through six. But, I think most people will move through these stages on their own no matter what. Understanding these stages, and knowing they are temporary, could conceivably move someone forward by stimulating feelings of hope. Knowing each stage is a temporary stepping stone along the path of transformation could make it easier to bear.
Do you identify with these stages? What stage are you in?
After writing about the importance of disclosure a couple weeks ago, I have been thinking about an easy acronym to use as a reminder. The ABC’s are easy for anyone. These five strategies for coping with hearing loss will lead to more satisfaction and improve your quality of life.
ASK FOR ACCESS.
Look for this international sign that indicates access for the deaf and hard-of-hearing.Years ago, I went to see a burlesque production at a theater in Seattle. When buying my ticket, I asked if their performances were captioned. Of course, they weren’t. This was a long time ago before John Waldo of Wash-CAP, and Cheri Perazzoli* of Loop Seattle began their campaign to make Seattle more accessible for deaf and hard-of-hearing people. So the answer was “no.” I could have gone and been miserable while missing out on most the fun, but I felt bold that day.
I asked if I could have a front row seat, and told them I would be able to read the performer’s lips if I sat in the front row. When they agreed and said that I wouldn’t have to pay more, I was surprised. Additionally, they extended this benefit to one extra friend. When I arrived they also provided me with a transcript of the production! I was stunned. You will often receive a “no” answer when asking for access. But remember—the answer is ALWAYS no if you don’t ask.
Try to be flexible when they say “no.” Think of something else that might work for you and ask for that instead. Often times, I find that if they see me as willing to compromise, they will try to meet me half way. Meanwhile, be sure to support venues that offer access and let them know how pleased you are.
In her last post, Chelle mentioned that we should look for the international sign for deaf technology access. (See the illustration to the left.) There is also an app aimed at helping deaf people find looped access. This is so cool, because you can download it to your phone, which means you can be a little more spontaneous while out with friends. It will help you find a nearby venue that offers looped access.
Buy the best hearing devices and ALD’s you can afford.
Notice I did not say to buy the most expensive. If cheaper aids have the features you need, such as t-coil or noise reduction programs, fine. But be good to yourself and buy what you need, not the smallest or least visible hearing devices. Make access to sound your priority when purchasing hearing aids. Without t-coil, you won’t be able to take advantage of the many venues that are looped for deaf access. You’ll be left out of the loop. Access to sound enables a better quality of life and more satisfaction.
Control your environment.
Whether you need to move to a quieter table in a restaurant, or ask someone to put their barking dog outside when you visit, speak up. Hearing people have a natural filter that allows them to isolate the speech sounds they need to hear. Hearing aids are better at isolating speech than they used to be, but they are far from perfect.
Many people will be unaware of your hearing challenges if you don’t tell them what you need, because they can hear even with the barking dog and clatter of dishes. It hardly bothers them. Moreover, expect to tell them more than once. They will forget. It does get frustrating having to tell people all the time. Look at it another way, and realize you must be compensating so well that they forget. Eventually it will become automatic for them to request a quiet table in the corner, or to put the barking dog in another room when you come over.
Lipreading. If you rely heavily on lip reading, you may have to consider asking to trade seats with others if someone’s head is in front of a setting sun. A setting sun in a window behind someone’s head will put their face in a shadow. Your constant need to look at their lips will cause eye strain with the glaring sun directly in your field of vision. Tell them. Alternatively you could ask them to close the blinds. Another challenge for lip readers is when hearing people want to talk in the dark. It may seem like a no-brainer to you, but it isn’t to others. Tell them you need light in order to see their lips. Whatever you need, maximize communication by taking control of the environment. It isn’t all about what you hear but what you can see as well.
Disclose your hearing loss.
Whenever you have trouble hearing, tell people you’re having difficulties hearing them. Don’t wait for something embarrassing to happen. We all bluff sometimes, but it’s usually better not to. Realize that your compensating behaviors give you away. People notice you are “different.” They just don’t know why. If you tell them you can’t hear and that you lip read, it changes their perspective. Instead of thinking you are weird, harebrained, or inattentive, they will understand that you simply can’t hear that well.
Find out what your audiogram means. Learn about new features on hearing devices. Try ASL if you think it could help. Research Assistive Listening Devices (ALD’s), hearing dogs, and the American Disabilities Act (if you live in the USA). Learn about your rights and if there are state laws that will protect you from discrimination. (If you are not in the US, most other countries have something comparable. Find out what your rights are.) Learn if there are resources that will help you pay for hearing aids, a captioned phone or blinking fire alarms. The SayWhatClub has an excellent resource page called Hearing Loss Resources on the footer of its home page at saywhatclub.org. Talk to others with hearing loss. Doctors are often surprisingly unaware of the resources out there to help you navigate your life with hearing loss. The more informed you are, the better you will be at addressing your needs. These five strategies will go a long way toward improving your quality of life.
*(Correction Note- Cheri Perazzoli’s name was previously spelled incorrectly.)