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Archive for the ‘Support’ Category

When Yin Meets Yang

In Coping Skills, Deafness, Hearing Loss, Partially Deaf, Support on December 14, 2017 at 5:38 pm

By Michele Linder

There are both good and bad things related to hearing loss, but the misconceptions that others⎯those who do not know what it’s like firsthand⎯have about it are something we who live with it every day have a responsibility to change.

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Reading a Hearing Like Me article, Being the Change: How to End Hearing Loss Prejudice, this morning made me think of my own life and the moments along the way where I felt as if I was doing my part to put a positive spin on living with hearing loss.

Do you remember the exact moment that caused you to turn the corner? That point when you went from accepting the negative of how others see you with hearing loss⎯sometimes we feel as limited as the wrong perceptions we encounter⎯to a more confident and better version of yourself and capability?

For me, it was a gradual, decades-long process. Each teaching moment pushing me toward who I wanted to be without my even knowing I was headed there, until something would happen to shine a light on the positive. I’ve written about such moments, and this article, from November 2014, was a memorable moment for me:

Be What You Want the World to See

Originally posted on the SayWhatClub Blog,
November 20, 2014
 

be who you want the world to see

You just never know… there will be moments when people cross your path at the exact time you need them, for the exact encouragement you are looking for. I’ve had this happen to me countless times in my life, and when it happens I’m always in awe of how the universe looks out for me.

Then, on the flip side, you just never know when your presence in another’s life will be just what they need at that moment. Those moments are just as awe-inspiring, they serve to give you confidence, and to let you know all of the struggling you’ve done to get to a better place can have value, not only for you, but also for others who are struggling and searching for answers.

Sometimes all that is needed is someone to cry with. Never underestimate the power of sharing tears and letting down your guard to show compassion. It means a lot no matter which end you are on.

One morning last week, I got up at 5:30 to leave the house in order to drive (an hour and a half) to Grand Rapids for an appointment with the Morton Building people to talk about some barn improvements I’m looking to make to our pole barn. The gentleman who handles our area of Minnesota seemed very nice via our email conversation, and upon meeting him I could tell he was very eager to accommodate my hearing loss, which I had made him aware of through our Internet correspondence.

Morton Man and I walked to his office and got down to the business of barn brainstorming.  During our meeting, there came a point when we needed to go out into the warehouse to look at some of the applications we were discussing. Talking while walking came into play, and, of course, when someone is trying to show you something and talk at the same time they tend to point at what they’re talking about. Pointing also means they tend to look at what they are pointing at, which is a train wreck for a lipreader, so the Morton Man kept apologizing for looking away as he pointed. I told him it was okay, as there is a learning curve, he would eventually get it.

The Morton Man paused, and I could clearly see he was collecting himself to tell me something personal. When he spoke, he told me our interaction was actually very good training for him because he had a 4 year-old granddaughter with a conductive hearing loss. As he shared her story, it was clear how concerned he and his family were for her and how emotional it was to see their beloved girl struggle to hear. This began a 15 minute discussion about hearing loss, how really debilitating it can be, but also how manageable it can become if you have the right attitude and tools. We talked at length about the information that was out there and how to go about finding that information, and I shared some of my own experiences with him, telling him how hearing loss does threaten to take much from you, but it can’t take more than you let it. At one point he actually broke down and cried and had to collect himself before he continued speaking. I instinctively gave him a hug and let him know that it was okay to cry, as hearing loss is very upsetting. Tears are common and very appropriate.

As we walked back to the office and began again talking about my barn, the Morton Man paused once more to say, “I have kind of a strange request… my daughter’s office is just a couple of miles down the street and I think it would be beneficial for her to talk to you and to see someone who is deaf and who handles it so well.”

I told the Morton Man, “Sure, I’d be glad to stop in and meet your daughter. We can exchange contact information and I can share some resources with her that might help her deal with her daughter’s ongoing hearing loss.”

Our meeting on barn matters concluded and I followed Morton Man to his daughter’s office. The daughter and I had a very similar conversation as the one I had had with her dad, as he looked on. I repeated some of the same information that I had given him and there were about three instances where the daughter teared up and had to compose herself, which, of course, made her dad break down. I held her hand or hugged her each time and then went over and hugged her dad. It came in handy that I come from a family of contagious criers… I’m pretty comfortable with tears.

We all exchanged information and I promised to email the daughter with some research results on groups she might join for parents of children with hearing loss and other information I thought she might find helpful.

The final thought I left the Morton Man and his daughter with was this: Make sure you instill in your granddaughter/daughter that there isn’t anything she can’t do because of her hearing loss. And when you come up against people who might discourage your girl from participating in something because she can’t hear, move on to the next person, and the next until you find that one person who says, “Let’s see what you can do.” If she knows she can do anything, believes it, and then acts upon it, it becomes true… she’ll be okay.

And their little girl will be okay… it won’t be easy, there will be challenges, but she’ll learn some good things along the way to carry into who she becomes as an adult.

Yes, you can be capable, confident, strong, and deaf.  I’ve learned that from people who have crossed my path at the exact moment I needed them, saying “You’re not alone, you’ll be okay.” I’m thankful for the opportunity to pay it forward on days when I’m able to be what I want the world to see.

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Wishing Backwards: 10 Things I Wish I Had Learned Sooner

In advocating, Audiologists, captions, Coping Skills, deaf, Hearing aids, Hearing Loss, Life, Lip Reading, Partially Deaf, SayWhatClub, Speech Reading, Support on April 1, 2017 at 3:57 pm

By Michele Linder

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SayWhatClub is such a wonderful place, and many of the articles I write for the SayWhatClub Blog come from posts to my home list, Connect. We get into some good discussions and share valuable info with each other.

A fellow Connector asked, “What kinds of things should you have learned sooner?

For me, this question takes me back to childhood—growing up poor in a family headed by a struggling (in more ways than one) single mother, abandoned by a father I never met, and striving to please and emulate a deaf grandmother who was the most capable and loving person I’ve ever known—and having some traumatic experiences (not related to hearing loss) to work through.

I most likely began losing my hearing long before I flunked the hearing test during the public school screening in grade school. The result was a visit to the county clinic. All I remember of the appointment is that the doctor told my mother I was very proficient at lipreading—it was likely I had had a hearing loss for quite a while—there wasn’t much to be done for “nerve damage” (this was the 1960s), and that as an adult I’d likely be deaf and would need to learn sign language.

That day was the last time my hearing loss was talked about in any meaningful way, and it was the one and only time, during childhood, I saw a doctor for it. I continued to flunk the hearing screenings at school, but I got smart… if I knew about test day ahead of time, I’d conveniently fake a stomach ache and stay home. What kid wants to take a test they can never pass?

On my own, I learned how to live in a world I couldn’t fully hear. I relied on lipreading and other visual skills–anticipatory and observation.

10 THINGS I WISH I HAD LEARNED SOONER

1. I wish I had had a good advocate to model after. I didn’t even know I could advocate for myself, nor was I aware I should.

I purposely didn’t include mentor here, as I had a fabulous mentor in Grandma. She was also a lipreader and did not know or use sign language to communicate. She finger spelled on occasion, though, and she taught my sister and me. The fact that she was so capable is part of what allowed me to consider that hearing loss wasn’t going to be a deal-breaker in life.

I went through my entire public school education without many people knowing that I had a severe hearing loss. I was a good faker and I had a super power (I wasn’t even aware of) where my brain would swoop in and take over for my ailing auditory nerve, so only a few close friends knew. I wasn’t actively trying to hide the fact that I had trouble hearing, as much as I simply didn’t give it much attention. There were much harder issues in life to deal with, so the top spots on my list of things to overcome were already taken.

2. I wish I had realized sooner that faking and bluffing my way through life wasn’t a positive to anyone, especially me. Enough said.

3. I wish it had occurred to me sooner to apply the same skill I used to overcome other challenges to my hearing loss. I worked through many things to become a well-adjusted adult, but it never occurred to me until much later in life that I could apply the same to my hearing loss challenges. I used some really good therapeutic approaches (unbeknownst to me at the time) to change what I didn’t like. Among them, “exposure therapy”.

When it did finally occur to me, it was life-changing. In a situation where I hadn’t handled myself well, I’d think about what I might have done differently for a better outcome. Once I came up with some things to try, I’d take myself out on field trips to experiment.

Note: I only went on field trips on days when I was feeling adventurous and in a good frame of mind.

Example: The confusion over what to call yourself–deaf, hearing impaired, hard of hearing, half-deaf, partially deaf? In my experience, “Hearing Impaired” always made people confused… they didn’t really know what it meant. “Hard of Hearing” caused people to yell at me… they thought shouting was necessary. “Deaf with a lowercase ‘d’” never felt like my word to use, but I tried it and got results. Labels aren’t always necessary, but “deaf “is the most effective, so I’ve become comfortable using it.

However, what I discovered to be most effective is to simply tell people what I need from them.

Example: When checking out at the grocery store, I say “Hi, how are you doing? I need you to know that I read lips, so when I’m looking down to unload my cart, or digging in my bag for my credit card, I’m not going to hear you.

Telling it like it is goes a long way to normalize interaction and communication. People see you as capable and the fact you can’t hear becomes a non-issue. Gone are the awkward situations at the grocery check-out.

4. I wish I had learned sooner that it’s okay to question the expertise of audiologists and doctors. This one is not meant to bash all audiologists and doctors, it’s more of a commentary on my own naiveté, as I put too much trust in clinicians I considered experts. I assumed they had my best interest in mind, without fail, and if there was something else out there to help me, when hearing aid trials proved less than beneficial, they would be aware of it and inform me about it.

Many of the audiologists I saw during the thirty years I tried hearing aids were nice enough, but none of them were what I would call exceptional, yet it didn’t occur to me that I could change audiologists if I wasn’t satisfied… I thought I had to see whomever I was referred to… it seemed traitorous to go elsewhere.

If you’re not getting satisfactory results, then it’s perfectly acceptable to look for someone who is a better fit for you. Joining SWC is what opened my eyes. I learned that some audiologists had incentives to push certain brands and models with most bells and whistles, whether you needed them or not, as they made more money on what was more expensive. To counter, I heard from others who sang the praises of their exceptional audiologists. It made we wonder what difference it might have made had I found someone exceptional?

5. I wish I had become aware sooner that it’s not my fault that I can’t hear with hearing aids. My lack of success isn’t a failing on my part, but sometimes it seemed as if my audiologist was implying that I was the problem. I tried hearing aids from age 21 to age 50 (the year I qualified for cochlear implants) and they simply didn’t give me the benefit I needed. I learned very late that this was probably due to hyperacusis—an intolerance of every day sounds. However, I didn’t learn about hyperacusis from an audiologist, I learned about it from SWC, and then later I was diagnosed at Mayo Clinic with severe hyperacusis.

6. I wish I had found a support group sooner. I was 48 years-old when I found SWC by stumbling onto a SayWhatClub newsletter article someone had reposted on their blog.

At the end of each and every hearing aid trial, I would ask my audiologist (sometimes through tears) what else could I do since hearing aids weren’t working for me. The most I ever got was a Harris Communication catalog shoved at me with no recommendations. The audiologists and ENTs I saw were not equipped or even knowledgeable about what to do when hearing aids don’t work. There is a huge gap between the medical community and those in the know about hearing loss.

SayWhatClub, and other groups focused on hearing loss, is part of what fills that gap, because there’s nothing like getting support from others who don’t have to imagine what your life is like, they know, because they live it too. You can find some really valuable information from groups like ours.

7. I wish I had been more confident in my hearing loss sooner. As a young adult, I let embarrassment and awkward situations deplete me. Had I not been a young mother (I had my first child at age 23), or an adventurous soul, I might have suffered more isolation and depression than I did. When you have a family, four young kids (I had my last child at age 29) depending on you, and you’re moving around a lot with a husband in the military, you don’t let a little thing like hearing loss get in the way. You find ways to live with it. I continued to ignore my hearing loss and didn’t put it “out there” like I should have. Looking back, I think I was happy to have such a wonderful diversion.

8. I wish that I would have recognized sooner all of the things I’m really good at because of my hearing loss. I credit SWC for shining a light on how really good at coping I was, even as a kid left on their own, and I possess a lot of good skill because of hearing differently. Sometimes you have to see things in others before you can recognize them in yourself.

9. I wish that I had learned sooner that apologizing for not being able to hear isn’t necessary. Many people with hearing loss are diffident and apologetic, and I was one of them. I felt as if I was inconveniencing others when I failed to understand and would panic if a repeat was no help. This was a really hard thing for me to overcome, and it’s the same for a lot of people with an invisible disability.

10. I wish I had learned sooner that telling people upfront that I can’t hear is the key to everything. When you do, you’re taking charge and heading off the great unknown. I used to wait for trouble and then disclose, but that’s backwards. Disclose, in the way that is most effective and comfortable for you—it won’t be the same for everyone. Once people know you can’t hear and what you need from them, it sets a tone for successful communication. It’s the magic formula for having good days vs. bad days. It’s what allows you to be who you are in spite of being different.

I’m pretty confident and capable these days, and I credit SWC and volunteering for much of that. That’s not to say I’m always confident and never have a bad day—I still have days where it’s just better if I stay home, and likely always will—however, I don’t think I would be as far along as I am if I hadn’t volunteered with SWC and as a captioning advocate. I started out volunteering because I wanted to pay forward what others in SWC did for me when I was down, but I soon realized I was helping myself far more.

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