In 2007 my hearing took a big drop and I knew it because three year old hearing aids were not powerful enough anymore. It saddened and concerned me since I couldn’t afford new hearing aids but life continued as it had in spite of it. I needed a few more repeats than I used to and co-workers at the salon helped me with the phone more often. They helped without hesitation or questions. I had family and friends who acted as my translators while running errands around town and because it was a smaller town, people knew and accepted me. I had no idea I had such a wonderful support system in place.
At the end of 2008 I moved out of state to a big city away from my support system. I moved with confidence in myself, my abilities and belief that people were helpful. That confidence took a pounding! Even though I landed a job right away, there was no one to help me with the phone anymore. Making matters worse, something in the building made my t-coils hum rendering my hearing aids useless. I took my volume control phone to work thinking that would help but words were still garbled and I couldn’t get names or numbers right. There were people who called to hear my voice and say “never mind, I’ll call back later.” (Why did I understand that!) It didn’t help having a co-worker who pressured me to answer the phone. Soon I began to loathe the phone…and the salon.
My hearing aids had no idea where to focus.
The salon, though beautiful, was an acoustic nightmare. My hearing aids wouldn’t function, meaning I couldn’t hear clients in my chair either. I became a boring hairdresser with nothing to say, unable to create the necessary bond with clients. Most of my first time customers didn’t come back to me. Every day I went into work a little later and more often than not I came home crying. Who knew a hearing drop would affect me this much well after it happened?
I quit after 6 months of torture. My working life as I knew it ended. Ever since I was 18 years old hair had been my anchor. If all else failed I could do hair but the wind was knocked of me here.
In one sense I withdrew. Socializing felt like a nightmare, all around me was English but it may as well have been Spanish. It was nothing but a crush of noise that didn’t make sense. I stayed home more often and started cleaning houses for money because cleaning didn’t require hearing. I became an introvert after being social most of my life.
During this time I joined the SayWhatClub again seeking solace. SWC helped me once before and I was sure it would help me again. They listened to me, they sympathized and they helped me get back on my feet again slowly but surely. I started to spend more time on my computer reading and replying to emails. To my husband it seemed like I was withdrawing from reality but it was more like healing instead.
There is a local HLAA chapter here, an advantage to living in the big city. My extrovert self sent me to a meeting. I needed people and I needed people who would understand. This was one of my best moves. I experienced CART/live event captioning for the first time. I didn’t have to hear, I could see the conversation as it happened right there on the screen. I met people who knew to face me and speak a little slower. I admired several people for their advocacy efforts and decided I wanted to be like them when I grew up. I became a regular at the meetings and it wasn’t long before I was part of their steering committee.
The meetings are held at the local Deaf and Hard of Hearing center. I started attending their hearing loss classes and captioned lectures/workshops. Coming in from the outside world, I felt the weight of hearing loss fall off my shoulders. I discovered a place safe for me.
A few years later I started attending hearing loss conventions and WOW! Here was another world created just for those with hearing loss, an ultimate place to learn and socialize without fear. There were loops and captions in every workshop making it easy to be there. I had tons of energy leftover to hang out with new friends.
The HLAA convention in Rhode Island had a workshop called Hard of Hearing and Exceptional: Landing the Job and Achieving Career Success led by Malik El-Amin. I remember him telling us to be in control of our hearing loss, don’t let our hearing loss control us. Control my hearing loss? My hearing loss ruled my world. How would I ever own it? Even though I couldn’t grasp the concept at the time, those words continued to bounce around in my head.
I continued with my hearing loss groups. I achieved a small victory in getting captions at a workshop. I became a hard of hearing assistant at the Deaf and Hard of Hearing center teaching hearing loss classes to others. I attend workshops on advocacy and go to the state capitol to show support at the legislative level. I also got back into doing hair out of the salon this time by going to home bound people’s houses. Even if some of those things put me out of my comfort zone, I pushed myself forward.
None of this is new to my writing, you may have seen it throughout my posts. What’s new is I’m confessing acceptance of my hearing loss and I wouldn’t change my journey. I’m comfortable with it and I learned to be in charge of it. I’ve been through hell because of it but I can’t hate my hearing loss anymore. This is difficult to explain because few people reach this level. I tried to talk about it once and botched it. Hopefully I don’t sound like I’m from another planet this time.
In short, here’s my hindsight:
- I realized some years ago that most everyone has something to deal with; depression, multiple sclerosis, muscular dystrophy, ADD, hearing loss and so much more. I’m not the only one trying to figure how to live well with an affliction. Sometimes we feel like we are the only ones in the world with a cross to bear but we aren’t. Talking to others about their issues keeps a balance.
- In the last 5 or 6 years I read every book on hearing loss I could get my hands on. I joined hearing loss groups and attended their conventions. I feel less isolated being around others who also have hearing loss. Through them, I acquired a nationwide network of people with hearing loss.
- Without hearing loss, I would never have met some of the neatest people I know. If I had to chose my hearing or my friends, I’d keep my hearing loss. I treasure the people it brought me to.
- I took a lipreading class. It’s hard and I’m not anywhere near a perfect lipreader but it helped. I started teaching the class. Repetition is a good teacher. Let go of hearing/seeing every word, catch what you can and let the rest go. If nothing came through, ask for a repeat or better yet, a rephrase. Letting go of hearing every single word took a lot of weight off my shoulders.
- I learned to advocate for myself personally and in public. It gave me confidence. I learned to advocate through workshops, classes and support groups.
- Volunteering for hearing loss organizations gave my hearing loss a purpose. There are an estimated 48 million people out there with hearing loss. Many of those people could use help and guidance of some sort. After you’ve learned a thing or two, return the favor and pass it on. My volunteer efforts looked good on my resume and I was hired to be a hard of hearing assistant for the state. Your volunteer efforts could lead you to a magical place.
- Relax. It took me years to relax in social settings. Once my confidence built up I relaxed more. The less I stress, the more I hear with my ears and my eyes.
- I don’t have to be a part of everything. I pick and chose what I’ll do and won’t do. Am I too tired for speechreading? Then no. Will the sports movie my husband wants to see have captions, no? Then I’ll pass on that. I’m not interested in extreme sports anyway. Should it be accessible? Yes but this one’s not my fight.
There’s probably more to this list. It’s been hard to put my finger on just what brought me around to complete acceptance. It doesn’t mean it’s all a breeze now. I get mad and sometimes I get hurt. The difference is I snap out of it quicker because I know what to do. I take the experience and think, “What can I do to make this better next time?” If I can’t make it better, maybe it’s not worth my time and effort.
There could be another big drop in my hearing in the future. That would mean more anxiety as I feel my way around, figuring out what works best again. It will shake up the world as I know it. I’ll have my fits and I’ll have to reach yet another level of acceptance to some degree. However, I already have super role models in place so I won’t be so alone should it happen again.
So be upfront about your hearing loss. Talk about it. Learn about it. The more you know the easier it is to work with. The more people you know, the more help there is available.