You Don’t Know What You Don’t Know: Hearing Loss

A few of us experienced HoHs (hard of hearing people) got together to discuss hearing loss and our discoveries along the journey. Deep in the discussion, we began to talk about how much we didn’t know until we met other HoHs. The journey starts solitary and our hearing professionals were of no help early on in our lives. We learn by trial and error, through embarrassment and if we are lucky, from others with hearing loss.

Michele:

Flunking the public school hearing screening in the 1960s didn’t mean much to me, because I had no idea that what I heard was not what everyone else heard—quite typical for someone who loses their hearing gradually and progressively, no matter your age.

Here are a few more things that I didn’t know that I didn’t know from childhood:

  • My brain could work wonders to compensate for my damaged auditory nerves—fine tuning my lipreading skills and filling in the blanks of what I missed in other ways.
  • I didn’t even know that I could lipread until the doctor who made my diagnosis in grade school told my mother, “She has likely had a hearing loss for years. She is lipreading everything I am saying.” 
  • I was clueless that the reason I could never keep my head bowed while my Sunday School teacher prayed—I was admonished when I was caught—was because I needed to look up to watch her speak in order to understand what she was saying. I wasn’t simply being defiant, I was lipreading.
  • I didn’t know I needed to advocate for myself. Even if I had, I wouldn’t have known what that looked like, because I didn’t know anyone else like me. I didn’t know I wasn’t the only one.


It took looking back at my childhood from my early 40s to recognize some things were even related to my hearing loss.

No one suggested hearing aids, and I was left to figure out my hearing loss on my own for my entire childhood. I didn’t see an audiologist or have another audiogram, outside of public school screenings, until I was married. I tried hearing aids from 1980 through 2009. That is almost three decades of relying on audiologists—who I always had considered experts—to teach me everything I needed to know about my hearing loss, hearing aids and anything else that was available to me. It wasn’t until I joined an online hearing loss support group at age forty-eight that I realized how my audiologists had failed me. None of them had thoroughly explained the particulars of my audiogram, outlined realistic expectations of what hearing aids could do for me, or steered me toward services or equipment that might help me cope better. I even discovered that I have severe hyperacusis (officially diagnosed at Mayo Clinic in 2010) through my own research.

Chelle:

As a teenager I started  losing my hearing and in my early 20’s I got my first pair of hearing aids. As of now, that’s 30 years of hearing aids with 6 different brands. With all those audiologist visits and all they did was sell me hearing aids or tweak my programs (more when digital hearing aids came along).  For over 15 years not one audiologist offered me information on support groups. The biggest thing they never told me was that my hearing aids did NOT fix my hearing loss.

  • Everyday I struggled to hear at work.
  • Quite often someone would ask me if my hearing aids were on when I asked for a repeat.

It  left me feeling inadequate and like it must be my fault somehow. I shied away in social situations and my young kids would often help me hear, translating what was said. Why did I understand my kids more than adults?

Through my own efforts, I found support groups for hearing loss where I found new resources and learned:

  1. Hearing aids work best within 6 feet. That’s why I couldn’t hear from other rooms even with my hearing aids on. I learned this many years into wearing hearing aids from my state Deaf and Hard of Hearing Center.
  2. Hearing aids work best in quiet environments with good acoustics. The room could be quiet and I might still have a hard time if the acoustics are harsh. Reverberation (tiny echoes) aren’t something hearing aids can process well unlike normal hearing. Again learned through classes at my state Deaf and Hard of Hearing Center.
  3. No audiologist explained my speech discrimination scores. Without hearing aids or my eyes I had a 30% word discrimination. With my hearing aids and without looking my hearing aids gave me a 60% percent word discrimination. With my eyes and me being able to lipread, I got 90%. Me lipread? Yes, I use lipreading even though I didn’t know I was doing it for years.   I learned this reading a book, Missing Words, many years later also.
    1. None of them told me I had lost certain consonants due to being profound deaf in that frequency range. That’s why the words I heard had holes and why it remained difficult for me to understand speech.
  4. I used lipreading as a natural instinct. Learned after taking the Speechreading class and then teaching it over and over. Hindsight.  

Sometimes we don’t know what we heard was wrong, which happens to us all.

Virginia:

While working for one of the top twenty private companies in America, I was sitting in a management meeting when the president of the company directed a question to me personally.  I answered the question, there was no further comment, and the meeting continued. Afterward I went back to my office, my boss walked in and said, “You know you really embarrassed yourself when you answered that question. I was devastated and humiliated. Apparently I had misunderstood the question and answered inappropriately. From that time forward, whenever I’m in an important conversation or ask a question that’s obviously noteworthy, I will repeat the question back to the speaker to confirm my understanding before commenting or answering any questions. I never want to assume I understand what’s being said in that kind of environment again.

Once we all learned more about our hearing loss, we felt like years were wasted, diminishing ourselves and taking the extra burden of communication with a dash of shame thrown in. Hearing aids were the only option we were given without knowing their limitations. Once we found each other we learned alternative solutions and better self-advocacy skills.  We could have been more successful with our hearing loss earlier in life if we had been given more tools by our hearing professionals than just hearing aids, or least pointed to one of several support groups.  

Phone Trends

We saw an old movie yesterday with a phone that had cords and didn’t leave the desk. We laughed. Remember when… (my mind wanders off into movie dialog from The Jerk). These days we prefer our smartphones

Which can be had on Etsy

I resisted cell phones for a good many years. Who wanted to be tracked like that? My ex got one for me and I remember keeping it in the glove compartment a lot until we were divorced. I got one of my own eventually and later learned how to text on my flip phone from my teenagers.

Texting suddenly made my cell phone worthwhile. I could text without looking, feeling the bump of each number/letter. I knew when to switch certain letter combinations without looking too. I hung onto my flip phone a few years after smartphones became common.

I think I had a Samsung, which is still available on Ebay.

My husband resisted cell phones longer than I did. He had to learn how to text after meeting me as by then that was my preferred mode of communication. He’s hard on cellphones, breaking them often, so he moved onto the smartphone before I did. It took a few months of me watching him look at his email thinking, “That might be cool” because email was my other preferred mode of communication. So I got one while we were on trip south in the VW Vanagon.

I feel a certain nostalgia for the flip phone but I could never go back. With smartphones come a variety of apps and there are a number that I use for personal use and some I use for hearing loss. I use my smartphone mainly for text, email, camera/photos and music. (Music is still good if it’s piped right into my ears.) I rarely use for it’s intended purpose; phone calls.

I still feel a certain amount of anxiety when the phone rings even though I have InnoCaption. It’s there though and I use it when I have too but I need to psyche myself up to use talk on the phone, without lipreading. I also have to make sure I have good signal for Wi-Fi and cell service so my captions or I get fouled up captions. I also need to make sure I have a quiet environment so I’m not distracted or and I can use what hearing I have left in case I get the occasional lousy translation. That’s reason enough for some phone call anxiety.

I also have speech-to-text apps, AVA and Otter which I use more than phone calls. I have an app for my Neosensory haptic bracelet the Buzz. There’s a packing list, writers list, music app, tinnitus app, weather and more. It all blends. There’s apps available for hearing tests and turning your phone into an assistive listening device or personal amplifier. There’s sign language apps and other phone call captioning apps too like CaptionCall. I also use Google Meet a lot for the speech to text captions that come with that. I can see, I can hear and I have captions to back it up.

There are so many things you can do with a smartphone now that buying separate devices is becoming obsolete. Amplified phones for house use with landlines? Very few people are asking for that anymore. At work we have a demo room full of devices for people try but technology gets dated fast these days. I expect our smartphones will become the next ‘demo room’. People want to know more about apps than what we have in the demo room.

I’d like to hear from you. What are your favorite apps? What apps have you tried and found lacking? What apps are you looking forward to? Let’s connect, I’d like to learn more.

There are some people who still rely on landlines and phones. If you are one, check out Harris Communications or Teltex. They have a variety of amplified phones available.

Masks Continue to Unmask Hearing Loss

Mask are revealing hearing loss. People can’t deny it as much as they used to. The requests at work for hearing loss help in the last 6 months has probably been equal to the previous two years all together. People want to know where they can get hearing aids, they are requesting cochlear implant information, asking about speech to text technology, clear masks and more. You can find some of the resources here on the Utah Division of Services to the Deaf and Hard Hearing website.

Not only do mask block our lipreading abilities, they can distort sound and decrease volume. Tina Childress, AuD, wrote about the effects of speech with masks. It’s a lot harder to fake it these days.

The best resource continues to be other hard of hearing people. At work we have a weekly Coffee Chat to support those with hearing loss we started online when the pandemic struck. It gathers people with various hearing losses from Utah and other states. We all have a hearing loss but we are not all the same, which is kinda cool and offers variety. Some wear hearing aids, some do not. Some have cochlear implants, others rely on lipreading. Some are new on their journey with hearing loss and others much more experienced. No matter where we are, we are all new on the is path of communicating with masks. One things for sure, we are all struggling to find out what will work best and we are all helping each other with suggestions.

Building a network of hard of hearing friends has been incredibly helpful. We find out we aren’t alone and we can stay on top of the latest information through each other. We share how we approach grocery store clerks, get accommodations, using speech to text apps, how much gestures can help and more.

My personal mission this week was to order clear face masks, which I did finally, from two different companies. This became my goal last week after I ran into a situation while traveling with my husband. I have been using the solid face masks. He too wears solid face masks everywhere he goes. We went into a Subway…ugh! The endless questions! It’s my last resort for eating out because of that. My husband was ‘hearing’ for me and repeating what she said through his mask. (He will not lower his mask in public.) I stared at him blankly. He said it louder and I tried not to watch the space where his mouth is and tried focusing on what I could hear instead using some anticipation strategies. It was a huge struggle to get my sandwich completed and thank goodness the girl saw my hearing aids and starting gesturing. I walked out of there thinking I HAVE TO get him a clear mask because this is not going to work.

That was another topic in the last Coffee Chat, how we give up control to hearing family members and things become more botched than when we are by ourselves. If I had been by myself, I would have broken out my speech to text app. I did not even think of that in the middle of that communication disaster, I will next time. Earlier in that day, I did Panera for the first time ever while alone and successfully made an order after speech to text, writing it on paper and then her resorting to tapping it out on her phone. It took longer but it worked! I felt more accomplished too.

Clear masks are on a lot of hard of hearing people’s minds so that is another question I’m asked at work often. Work was good enough to buy us some face masks with clear windows however the window is too small for my liking. When I’m talking to other hard of hearing people, I often end up taking the mask off.

Other state Deaf and Hard of Hearing offices have also helped. The Arizona Commission for the Deaf and Hard of Hearing has a list of different resources for masks, click on the Face Mask Dilemma! Be sure to check out the link for tips on keeping a clear face mask from fogging up. They are also encouraging people to make clear face masks and share them with the community.

Massachusetts Deaf and Hard of Hearing office create a wonderful hospital communication card because you know health care workers will be wearing masks.

I’ll share my clear mask trial results soon. What are your favorite resources during this pandemic? I think it’s best when we all work together during these tough times.

Here is the mask I wear currently. It’s sort of our joke in the hard of hearing program, a take on lipreading. Read my lips! I get compliments in stores all the time for this mask. There was a time I thought I lost my ‘smile’ and then I found it again. I’ll be replacing it soon with a clear mask, hopefully, to educate more people.

Other interesting articles on masks and hearing loss:

The Reality of Listening Fatigue in a World of Masks

5 Things COVID-19 Taught Me About Hearing Loss

I Hear What I See: The Mask-Hearing Loss Dilemma

Online Meetings with Hearing Loss

The pandemic has changed many things. Masks seem to unmask hearing loss which proves once again how much those with hearing loss use lipreading, even if we don’t know it. Masks not only affect lipreading ability, it also muffles speech so it’s a double whammy. I use a lot of lipreading for my communication so my first habit when I hear someone is talking is to watch their mouth, now just a mask. Instead of seeing lip shapes, I’m watching masks suck in and out as they breathe while talking. That is strangely fascinating, which also kind of distracts me from hearing what I can.

Elephant bag face mask in 2020 | Elephant face, Mask, Funny elephant

Which is why I use speech-to-text apps, discussed in my last blog piece. (By the way, I was able to eavesdrop on another conversation last week at the dentist office about baby shower plans.) The dentists were impressed with the app and its abilities, gesturing for me to raise the phone when they had something to say.  The more people we show those apps to the more they  can help introduce others to communication access.

There are other handy tools we have learned to use during this time of social distancing too, Zoom and Google Meet.  Our staff meetings at work are held via Zoom but Zoom’s caption abilities suck. We have a CART person (stenographer) who has tried every which way she knows how to reduce the caption lag and isn’t able to. Not only that, sentences tend to be broken up into chopped up words and it’s hard to follow. Or all of a sudden we will see 3 lines and often it goes so fast we can’t read it all before it’s gone. We also popped out the transcript but there’s a time stamp at the beginning of each line every 5-10 seconds which interrupts the flow of reading AND there’ still quite a gap in getting the captions. My fix: request CART services and watch the captions from their website on another monitor or split the screen if on one monitor. We can also use our phone, or tablet, for watching captions too.

With hearing loss we have a few more obstacles than others do but there’s a way around those obstacles. At work when given the choice, we create our events on Google Meet. It has easy access to speech-to-text captioning for those who aren’t techie enough to figure out split screens. There’s a button on the menu to Turn On Captions. Meet uses Live Transcribe and we watch it as goes back to correct mistakes when it gets the gist of the sentence, pretty amazing. Speech-to-text can make some mistakes, as we discussed last time and most of the time but we usually end up laughing ourselves silly when that happens.

Many of us have taken what we learned at work and started using it for personal reasons. We have what we call Happy HoH Hour (hoh=hard of hearing). There’s nothing like hanging out with your HoHs and speech-to-text with video for making it happen. We’ve used it to connect with family. My kids and I have played Cards Against Humanity using Meet and All Bad Cards.  I’ve also used it to be able to video chat with my 9 year old ADD grandson who can’t stop moving and lacks the ability to hold the camera so I can see his lips while he talks. (His child voice is hard on my high frequency hearing loss, when he hits puberty it will get easier.) Meet works for both of us, he can wander around and I have captions.

You can use speech-to-text apps from your phone for online meetings. I prop up my phone on my laptop over the speaker and turn on an app for access to last minute, or short, online meetings. I recommend requesting CART in advance when you can but this works in a pinch. CART notes are more reliable.

Use the tools, stay connected. Hearing loss has a link to dementia. It’s not the hearing loss itself, it’s the social isolation that tends to go with hearing loss. Damn this pandemic for making it harder on us and limiting us in so many ways…but the online world belongs to us if we know the tools to use. If you are tech shy push yourself to get outside the box, ask a friend or family member for help. Once you do it a few times, it gets easier. 

Using Speech to Text Apps in the Days of Face Masks

I’ve been from Northern Utah to Arizona a few times now. Arizona has been a hot spot for COVID19. I thought about canceling my planned trip because of that but decided to be extra careful. In June, hardly anyone was wearing masks in Arizona. In July a lot more people were wearing masks…which of course is a challenge to those of us with hearing loss. This trip I even forgot my hearing aids on my desk!

Shame on me! Luckily I am comfortable in asking for communication needs with and without my hearing aids. It was not a catastrophe and even though I have to work a little harder to hear I know my way around.

My mom is learning things about hearing loss even though she doesn’t have any. Before I came up she met with someone for an appointment and masks were required in the building by the business so they talked mask to mask. My mom probably mentioned me which opened up a conversation about hearing loss and the lady told her masks made it really hard on the older folk who came in and how much felt for them as they struggled to understand her. I told my mom about speech to text apps (AVA, Live Transcribe, Otter) and she thought that was so clever.

I know lots about speech to text apps and I still forgot to use it back in June when I was traveling home from there, picking up food. The guy in the restaurant had an accent, a mask and behind a plastic shield! We struggled back and forth, taking twice the time needed as he continued to repeat over and over, gesturing wasn’t even a possibility. My prediction and anticipation skills out the window because I don’t know the routine of the place because I was traveling…and I was hungry. Hunger can make knock us out of the usual thinking too. Eventually we got it, transaction completed and he told me to wait at the car and someone would bring it out. That was so hard, I thought walking to the car. Then I got the big DUH, why didn’t I whip out my phone with speech to text app? Dang, missed opportunity.

A few days later I went to pick up a prescription. I had my phone out and my app on, I was ready this time. I let the pharmacist know I using a speech to text app because I read lips. She took two big steps back, pulled down her mask and started to use sign language while talking. Ha! I couldn’t even use my speech to text app now because she was too far away. Lucky me in that I know some sign language and could follow along, most people who are hard of hearing do not know sign language and will become frustrated at this point. And isn’t it funny how often I tell people I read lips and they start using sign language? (There’s a huge wrong assumption there we need to correct.)

I shared those stories with my mom and then showed how the apps worked. She was impressed. The next day we went for an appointment. We were seated at a desk with man behind a plastic shield. While he was behind the shield he didn’t wear the mask but as he was walking around. My mom brought up the speech to text apps and he actually said he uses the microphone option in the keyboard in a notes app to help people who struggle to hear with masks on.

Through my forays into the world of masks, I have come to appreciate the technology available and learning sign language to the point that I can communicate no matter what….except the guy in the grocery store who didn’t know sign but he could fingerspell which is not easy for me. He was proud of himself though and those who I’ve run across who do sign, are happy to use what they have learned and most are not above my level of sign.

  • Some knowledge of sign language is handy.
  • Speech to text apps can help a great deal.
  • Remaining calm through out all of it is probably what matters most. If I can remain calm and allow myself to get used to a voice and how they talk, I can carry on a conversation even with a mask. When I start to get frustrated or panicky is when I blow it.

I don’t know how I’ve learned to stay calm except I’ve learned to give a little time. Some years ago when I met new people, I told them it’s going to take me a few minutes to get used to the way they talk and the repeats will be less after that. (I must have been worried about having people repeat back then.) That was before all the cool apps came out on our smartphones.

Now I give myself that time privately, telling myself to wait for it. I don’t start off asking for repeats. I allow myself to relax with them; their voice, their tone, the words they use and most of the time I can connect the dots now. If I still don’t get it and repeat doesn’t work, the speech to text apps come out to play.

Here are a few of the speech to text apps out. They all have free versions and paid versions. I understand the paid version have better quality of captions. They are NOT perfect and will foul up speech depending on much background noise there is, how well the person articulates and just because it’s like autocorrect which is bound to get a few things wrong. I can usually figure out the mistakes as they are often phonic. We spend a lot of time laughing over the wrong captions, sometimes laughing to the point of tears.

AVA made for Deaf and Hard of Hearing people https://www.ava.me/
Live Transcribe by Google (no specific website)
Otter is a transcription app, but also works great for us. https://otter.ai/

Those are a few of the most popular speech to text apps. You can also use the microphone on the keyboard in texts, note apps and more. Click on the keyboard and look for a tiny microphone icon. Tap on that and start speaking. This tends to have more errors than the other apps. I was using this option to text my mom yesterday telling her I left Vegas…which came out “fake ass”. She needed me to interpret that one.

At any rate, I suggest we all get comfortable using speech to text, make it second nature. I think masks are going to be around for a while.

Funerals and Hearing Loss

My parents live 10 hours south of me. Before working full time I’d visit them every couple of months. Since working full time it turned into only a couple of times a year. I get along well with my parents, they turned into my friends also in my later 20’s and enjoyed visiting them very much.  I went to visit my parents in Arizona June 11th, helped them with some outside chores. It was a good visit, they seemed well, plugging along in their own way living life off the grid. I left on the 14th, that morning, hugging them both and getting the usual kiss from my dad.

When I got home I texted my mom as usual, letting her know I made it. She then texted saying she need to Skype with me. I hadn’t had the chance to make my normal cocktail after the long trip. Skype, I asked her, is something wrong? “Yes, very wrong.” So I got on my computer and pulled up Skype.  She told me my dad had died that evening.

When leaving them after my short visit that Sunday morning (more on traveling with a hearing loss during the pandemic later), I was a little upset that my dad wouldn’t wear a mask. “I can’t breathe and it makes my nose run.” I left thinking he would probably get COVID19 first and with his kidney troubles that would be that. Instead it was a fast and hard heart attack, which is probably how he preferred it. Suddenly my trip down there turned into the ultimate gift, I got to spend the last of my dad’s days with him.

My parents shared their wills with us years ago so we knew what to expect. Neither of them want any kind of services or celebrations of life. They are simple and humble people. All 3 of my kids wound up being there, my husband, my sister and her husband a long with her dogs. It was the busiest their house had been years. We were there with my mom at different times, not all once. They lived off the grid for a reason, they weren’t social people. My kids spread out their visits so we didn’t overwhelm my mom. It was good to have them there with me. My family is super inclusive about my hearing loss, no issues there. We shared stories on the porch where my dad liked to sit in the mornings and evenings. My boys and husband went out to look at the stars, one of my dad’s favorite things. It was simple and stress free communication wise.

No services meant no struggle to hear. I was not straining to hear different people I don’t hang out with, it takes a while to get used to other people voices and mannerisms to make lipreading work.  That sounds selfish but while already upset (emotions can make all the things I do do hear all the harder), I was glad there wasn’t more to deal with. At funerals I’ve attended in the past, I would always end up crying not only for the person who passed away but my inability to hear the stories shared. People cry while trying not to cry which wrecks lipreading, warps words far beyond the normal. They look down a lot too or off to the side.  The more I want to hear, the harder I try and the worse my lipreading gets along with my what’s left of my hearing. It’s a no win situation. As sad as it is, I was grateful for no formal service.

However, it meant meant my dad’s extended family had to mourn on their own. My mom couldn’t talk to anyone without crying, and she hates crying, so I wound up texting my cousins to tell my aunts.  Told them sorry to be texting but I didn’t have the aunts text numbers. I was happy to text with anyone if they wanted but I couldn’t call as me and phone calls don’t mix well.  They were okay with that and would text off and on and finally my mom was able to text with them too. Texting is a godsend, even for those who don’t have a hearing loss.

At a social online with Google Meet, I mentioned no services and being glad which opened up the floor to others with hearing loss and how they dealt with it in the past.  Most people agree it’s a hard situation. One person said she asked people to pass around her Roger Pen which worked really well until someone forgot. If people take turns going up to the front, it’s easy to leave any FM system on the lectern.

Life celebrations have typically been easier for me, when they aren’t formal. I can around and talk to different people and work it out.  One life celebration I attended gathered everyone in one spot and people took turns talking. That was hard on me, I couldn’t get around the room with about 30 people fast enough to catch anything. Informal is much easier on me.

Death of loved one is hard and being deaf can make it a lot harder. I’m fairly lucky, all things considered; getting to see my dad those last few days and having a family that doesn’t leave me out. I still feel heavy and foggy so it took a long to write.

family photo

Our family, late 70’s.  I’m on the right next to my dad.

Seeing that old family picture takes me back. My dad built that couch (and a month later they came up with a correction as the back was too short) and the cushions were held up by rope. The rope would squeak and groan every time we sat down or moved around. Back then I could hear all that. I remember I had pulsatile tinnitus though I didn’t know what it was then. I remember being as young as 4 and laying on my side in bed hearing ‘footsteps’, not knowing it was my heartbeat.

Things Learned in Two Years

I’ve thrown my passion into my job, it’s rewarding to help people who are in a tough spot with their hearing loss.  Support groups and resources have helped me great deal in the past and now I can give back. I still very much enjoy my job even when I experience setbacks, the challenges. I’ve continued to learn things, that never stops. Working with hearing loss for 40 hours a week has me wanting to set it aside when I get home. Computer use too since I use it so much at work.  Now I work at home too!

For the last few months I noticed I have missed writing here. This is my voice and not the states voice, not that there’s much difference.  The state and I are pretty much on par with each other for the hearing loss community and I have a couple of good supervisors who are supportive of my efforts.  Still, here I’m not on my ‘official’ platform.  I’m going to try to shoot for a blog piece twice a month. Today I thought I’d go over some things I’ve learned the past couple of years.

Number 1: I don’t have all the answers, but I have a large network of people to work with. I love my tribe. I’m so happy to have a network of hard of hearing friends to share knowledge with. That’s what counts in the end. Sharing with each other.

Number 2: I used to think there wasn’t as much opportunities for the hard of hearing so I wanted to create more events, more presentations and workshops. I was disappointed at first at few came but the few who came made it worthwhile. (But more on this for number 6.)

Number 3: It’s difficult to bring the hard of hearing together. Why is that? Are most of still stuck mostly in the hearing world? People take so long to seek support. Denial? The tribe has been so important to me and I’ve made some of my best friends within it. They understand me, we understand each other, so I love opportunities to hang out together. Together we can do a lot. If 20% of the population has some sort of hearing loss, why don’t more seek this out too? It’s been a valuable part of my journey.

IMG_9713

Some of the tribe

Number 4: Most hard of hearing people don’t advocate for themselves well. We can tell them how and what to do yet most won’t follow through. “I don’t want to be a bother.”  Or “my HR department would never do that and I can’t lose my job”. (These are hard times at the moment.)  Basically it’s fear of being different. We are the same, the only difference is we have other communication needs.  If you are afraid to ask for accommodations, then it’s best to be upfront about your hearing loss and there’s fear there too.  It’s a sort of vicious cycle. We need to learn vulnerability in order grow and gain confidence.  (See Brene Brown.)  Also, can you imagine if we all stood together? If more of us asked and introduced accommodations, we would pave a road.

Number 5: My sign language skills have improved. People say I’ve improved but it’s a slow journey.  I’m not fluent yet but I can get by now.  The reason for improvement is the 40 hours a week at work around the Deaf so I have someone to practice with. I also picked up another great hard of hearing friend who signs and she works me too. I compare my sign to my hearing loss, both have holes and I need to fill in gaps as needed with other ways…CART, slow down, lipreading.  It all combines fairly well these days.  This is a hard accomplishment for those of us who have no one to practice with.

Number 6: There are small blessings from COVID19. I was sent to work from home in mid March and I’ll be working home until the end of summer. Our program started having classes online the first week of April. We also started presentations online (Google Meet with Live Transcribe and CART too) and regular Friday morning social. We have hard of hearing assistants around the state and we were boxed in by counties. When we went online that border disappeared and we were suddenly open all over the state.  I invited out of state hard of hearing friends to participate and that opened each class and presentation up to more experiences. I’m slapping my forehead with a great big DUH! Why didn’t we do this before?! I now have more opportunities for more hard of hearing people and have helped people all over the state and then some. I’ve met other hard of hearing specialists from other states. This is the way to go. When things get back to normal (ha ha ha, whatever that may be now), we will continue online classes and combine them with in person events too.

IMG_9559

One of the socials

 

That’s enough for now. It felt good to share again, thank you. I’ll be back.

Always Learning, Never Stops

I miss writing, a lot.  I think I said that in my last post months ago. 

My full time job is to assist others with hearing loss, I’m the Hard of Hearing Specialist. That’s a fancy title however it doesn’t mean I have it all down, I’m still learning and experiencing new situations.

Situation #1

A few weeks ago I was required to attend a 2 day training. Being mindful I requested CART (live captioning) in advance and even helped to hook them up with the CART provider we use. It was a smooth process, the state accepts that accommodations are needed at least in my department. I went in confident and came out feeling apart from the process even with the best accommodation. The source of the problem, a workbook.

CART 1

Only I didn’t have a screen, I was reading off her laptop.

It’s not just the workbook, it started off on the wrong foot. Usually when I go into a group I introduce myself and my hearing loss but that didn’t happen this time because this workshop was about getting outside of yourself and thinking as a team instead. They instructed us to get to know the person sitting next us and introduce them instead…and go! (About 20 people.)

The room erupted into so much noise I was rattled and had to take out my hearing aids so I could focus on the person next me. It was a woman and her voice was mostly out of my range so I had to keep turning around to look at CART until I got used to lipreading her. I was back and forth so much between her and CART that I could not properly introduce her. (Next time take notes.)

She did not properly introduce me either. I was upfront about my hearing loss with her, she saw my initial struggle after the room erupted into noise and was too nice to mention it during the introduction. She did say I came from the Deaf and Hard of Hearing center but didn’t say I was hard of hearing though it was kind of obvious I was getting some special attention with CART set up right beside me.  I think she was trying to be politically correct and draw attention to me in that way. I’m not just a hearing loss but it is a map for communicating with me. (Next time go ahead and speak for myself after.)

The workshop progressed, we had new books and a workbook. It came down to writing in the workbook several times, a pause to write a bit then, “Go ahead and write while we keep talking.” That was just not possible. The first few times I rushed to get my thoughts down on the workbook, which we shared with the others at the table, only to have my thought process interrupted by voices. I hear enough to know people are talking but can’t understand what they are saying unless I’m looking, at either them or CART. So I watched CART and lost my chance to work in the notebook. After about the 3rd time I gave up trying to write in the workbook.

Teamwork was the key topic of the workshop and I was highly aware that I was not participating, it was depressing. Usually CART gave me the freedom to participate but because of a workbook I was not able to. How ironic. (Next time ask about about the training process so I’m better prepared.)

So I went home upset but it doesn’t take long for me to turn from pity party to how I can I make this better? 

  1. Show up early and explain to the training leaders what’s happening on my end, how I cannot write and listen at the same time.
  2. Introduce myself properly to the other 2 at our table and explain why I have very little written in my workbook.
  3. Don’t stress the workbook anymore. 

Which I did and felt much more relaxed on day two. I learned things, appreciated the books and someday soon maybe I’ll be able to look at the workbook more closely. 

Situation #2

I attended the HLAA convention last week. I agreed to go to a breakfast with a group of people I hardly knew and I was excited to get to get to know them better to expand my network within the hard of hearing community.  

First of all, I tend to see a lot of people I know at hearing loss conventions and I tend to want to stay up too late, soaking up being around those of my tribe. I stayed up too late the night before and then couldn’t sleep well the rest of the night. I went to the breakfast meeting over tired and you know what happens when you’re over tired with a hearing loss, right? It makes it a lot harder to concentrate, the brain doesn’t work fast enough piecing together sounds and in fact, it doesn’t work well at all. (Next time plan for more sleep, being well rested means a lot to a hard of hearing person.)

Lucy

How I felt.

There I am walking to breakfast with everyone and there’s a lot of signing going on so again I feel my confidence sliding. I’m learning sign language and I’m nowhere near fluent. When I’m around the Deaf I tend to want to slink back into the shadows and then forget everything I know about sign. Here’s strike 2 right off the bat in this situation, I’m over tired and my sign is painfully slow. Sitting down in the restaurant without my usual alertness, I sat in the worst spot possible spot, the majority of my party were back-lit against a wall of windows. Strike 3, you’re outta there! 

I think all of us were at least hard of hearing and hard of hearing people tend to vie for the same spot in restaurants, it’s a comedy to watch if in the know. So there I was trying to read sign and lips when I could, failing terribly and feeling very sorry for myself. I ate breakfast in silence watching the others and not feeling a part of the group at all. It’s not often that I feel like I’m in no-mans-land anymore, it used to be in the hearing world mainly but sometimes it’s the Deaf world too. I could not wait to get away.

Feeling frustrated with myself I went for a walk after to shake it off. Why did I not speak up for myself? When would I ever be fluent enough in sign, will I ever learn?What a sorry hard of hearing specialist I am.

After a mile or so, I forgave myself. I was over tired and if there’s a time I will break down its when I’m overtired, my brain simply doesn’t function as well. I am learning enough sign that I could follow some of the topics even if I didn’t know the why of the conversation so give myself a pat on the back for picking up a portion of it. I am improving if slowly. When I’m around other hard of hearing people I tend to start signing as I go and it comes naturally. When I around Deaf people I freeze so maybe it’s time to put myself in the path of more Deaf people at work to get myself over that hump.

 

mt fluency

I’m not quite to conversation ridge.

In the space of two weeks I had two experiences that made sure to tell me I’m as much the student as I am a teacher. It’s always going to be that way. I learn from my failures and in working through them,  which in the future build confidence even if I don’t feel it right this moment. 

Now to lighten up with some favorite pictures from the convention because I really did have a good time!

HOH tribe

welcome party

maclains workshop

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Promoted to Hard of Hearing Specialist

It’s been a long time and I feel guilty about that. I love writing and my favorite topic is hearing loss and I get to do that all the time for work now. I was working part-time as a hard of hearing assistant, my boss decided to retire late last fall in December. When her job went up in December I applied and waited. I had to interview and I had to wait. Right before she left in late December, they came in and offered me a job. I collapsed on the desk when they told me because one of my weaknesses is not being fluent enough in sign language, but I had the rest of it down! I started full-time with benefitst the second week in January.

Working 40 hours a week took some getting used to and sitting in front of the computer all day made me not want to look at a computer in the evening which is why it’s taken me so long to write. I have a lot to say and I hardly know where to begin. I feel lucky feels like a good place to start. I have a lot of support from certain staff and I’m happy to go to work each day, none of that daily grind feel because I love my job.

Me under my desk during an earthquake drill last week.

I started this blog when I didn’t feel so lucky; I felt a little angry and depressed about not being able to hear. However, all that ‘bad’ was actually the beginning of this journey, where I am today. I look back at when I started going to the Sanderson Center to Deaf and Hard of Hearing in 2009. I was learning to cope again after a big drop in hearing. I felt lost and hardly knew where to begin. I was certainly depresse because I couldn’t cope as a hairdresser anymore hearing wise. I could probably do it now if I had to but that’s not my path anymore…but it was devasting to me back then. In 2009 I was shy, kept to myself and very unsure of my place in the world. Who knew that woman become the next hard of hearing specialist? I find it incredible at time, like I should pinch myself.

2009 was the lowest point in my hard of hearing life but that’s where I also learned the most. I attened local HLAA meetings and I re-joined SWC. I started small by being there only, finding mentors and slowly building my confidence back up. Re-learning how to get along better in the hearing world. I volunteered and I kept moving up in my volunteering in repsonsibillity and was even the SWC president last year. I learned thing in the SWC convention committee, how manage issues on email lists. At the Sanderson Center I took sign Living with Hearing Loss and Speechreading classes. I took on more repsonsibility in my HLAA chapter, being president and treasurer over the years. I was getting support in the beginning and learning to give support later on.

For four years I grew slowly and in 2013 I applied for that part time job at the Sanderson as a hard of hearing assistant. I started teaching the classes that taught me and in the process I started letting go of doing hair. Not doing hair wasn’t the end of the world after all, it was the beginning of my life now, it’s so hard to feel resentful for losing that anymore. Or feeling resentful toward hearing loss at all. This is my place, it’s where I belong. It’s where I can now help others struggling like was 9 years ago and I can’t imagine being anywhere else.

There’s a lot of credit to give for people who helped get me here.

My SWC friend who turned into my best friend, Michele. She’s taught me it’s possible to lose all hearing and still get a long just fine in the world. Not that we don’t have struggles anymore but we now know how to take care of them and move on. She continues to inspire me.

My local HLAA friend and mentor Kathy, always patient and willing to guide people along. She gave me hope from the very first time I met her in 2009, so competent in her hearing loss and so good with people. I wanted to be just like her…then realized I had to be me. Kathy is special and there’s no way I can be ‘like’ her but I still try to take lessons from her. All these years later, I still rely on her.

Robin, my boss who retired and who’s job I got. When I became her assistant, she often gave me my head and pulled me back when needed. Edie, my co-worker, also often encouraged me. She remembers when I first came to the center, how quiet I was and how much I kept to myself. We worked on a lot of projects together, Robin, Edie and me made a great team and it taught me teamwork makes the best work.

I also credit my volunteer work for getting me this job. I learned how to create events thanks to working on the convention committee for SWC. I also learned how to tactfully resolve issues by being the list representative for SWC. My local HLAA chapter kept me involved with the Sanderson, people got used to seeing me, I became a regular and they had to hire me as an assistant (I often joke about that). Volunteering is an assett and it meant a lot on my resume, I gained experience in the volunteer world that I might not have otherwise. I highly recommend it.

Being the hard of hearing specialist for northern Utah means I get to help more people with hearing loss, I get to know more of my tribe. I hope I can shed some light on hearing loss for others in time of need. My job is rewarding in that I get to help hard of hearing people in a fuller capacity, help them like I was helped 9 years ago.

* Side note: Excuse my spelling and grammar errors. My nearly 8 yr old computer is giving me hell and I dread starting that thing up so I’m sitting here on my tablet and can’t find the spellcheck option. Hopefully soon I can buy myself a new computer. I’ll fix this post up next time I’m on a computer.

Hearing Loss Memes

I look for hearing loss memes to post on our work Facebook page. Some are funny, some are true and some are way off base.  Let’s take a look at memes.

This happens all the time with people who have hearing loss and there’s a variety of reasons. We can sense the other person’s agitation and we still didn’t hear it so we nod and let it go. Or someone is in deep denial still and afraid to admit they can’t hear.

There are a few fixes. One, we ask the other person to rephrase instead of saying “what” or “huh” a third time. We can repeat the parts we heard and ask them to repeat only the words we didn’t hear. If the other person doesn’t know we have a hearing loss, we can start being upfront about it and hopefully their agitation goes down. We can also chose to make these learning experiences for the hearing person. Hearing aids don’t correct hearing like glasses do for vision.

HL meme11

Wrong! They are called hearing ‘aids’ for a reason, otherwise they’d be called hearing miracles.

My high frequency hearing loss prevents me from hearing some consonants so conversations are like the wheel of fortune. Let the other person know that gesturing aids communication or have them use the ASL alphabet to finger spell the word.

HL meme 2

Excuse my language but this one bugs the shit out me. Yelling and shouting does not help most people with hearing loss. Plus, its in the ear (decibel damage there) and the person is not facing me. I hear with my eyes and my ears. Yelling in my ear or at me will only piss me off.  I will reach out, put both my hands on each side of your face and have you face me. That’s the correct way to communicate.

Hold everything! This might be funny to hearing people but let me tell you there are huge mistakes in communication here. You cannot talk to us like normal hearing people, it’s setting up communication for complete failure so you too need to change your ways. Number one, get my attention before you start speaking. Number two, be sure you face me so I can see what you are saying too.

For the hard of hearing people; tell the hearies in you life to face you. Be upfront about your hearing loss and your needs. Don’t just say “I’m hard of hearing,” tell people what you need to facilitate communication. Ask for a booth or a corner table at a restaurant to help block out some noise. Make sure your hearing aids have a program for noisy situations (the program should drop the noise level a few notches and have microphones on focus forward). Sit in well lit areas so you can see what’s being said even if you don’t think you lipread.

HL meme 7

Turn up your hearing aid! He said, “your money or your life,” not your money or your wife.

Um, how is he supposed to “hear” through a mask? I’m sure he uses lipreading with his remaining hearing. Volume will not help, lipreading and proper enunciation makes a big diffidence.  Does the guy with hearing loss know how hears, does his wife? Have they been properly educated about his hearing loss? Do they know hearing aids don’t replace true hearing? I’m thinking they don’t.

There is something to this one. What I heard compared to what was said is often a lot more fun! As long as we both have a sense of humor, it’s lots of fun. Go with it and laugh.  Another round please waiter!

Hearing aids pick up all kinds of noise, not just speech and it can be awful. It will make me clench my teeth so hard I can’t concentrate anymore. Maybe we had too much noise all day and we just need a break. Or we were lipreading for hours and need to rest the brain which brings me to…

HL meme 5

It is so much work and so tiring. If I’m already tired, there’s no way I can keep up so please excuse me from certain social activities at this point. I’ve learned my limit.

HL meme 12

Don’t we wish! Why did hear that and not that? I don’t know but it’s not selective hearing I promise you that. Maybe good acoustics help or the rotten acoustics wrecked my hearing. Maybe I was looking at you and maybe I wasn’t. Maybe you enunciated better than usual or your mumbled. There are so many variables when it comes to hearing loss.

HL meme9

Without captions or a hearing loop I can’t hear you in certain situations. If you want to include me and other hard of hearing people accommodate us and we’re happy to go out to those lectures, pep rallies and workshops. Otherwise you get “what” and we feel isolated while in a crowd.

Hearing loss still has too many misconceptions, there’s still a lot of educating to do and our job is to correct them. If you are hard of hearing please advocate for yourself because when you do, you educate the hearies. Figure out what is is you need to hear and stand by it, you deserve it.

Hearies, it takes too to make communication work. Do your part because we did not chose hearing loss, hearing loss chose us.