A Hearing Loss & Late Deafened Blog

2013 SayWhatClub Convention

In Hard of hearing culture, Hearing Loss, SWC convention on May 22, 2013 at 12:40 am

SayWhatClub conventions are special. Those of us who attend, leave with uplifted spirits on a natural high. After four days together, we feel like family. Not only do we learn more about hearing loss through workshops and presentations but we learn we aren’t alone with our daily trials. It’s one of the few times of year we can be in a crowd of people and not feel left out. Here are some quotes from those attended this year.

*Rhonda: “Totally awesome convention! It was a super fellowship time and learning experience for me…and I’m grateful.”

*Erica: “It was SIMPLY AWESOME! Josh and I had a wonderful time, and it was such a pleasure to meet each and every one of you; old friends & new ones!”

*Pat K: “I thoroughly enjoyed my first convention and look forward to future ones where I can get the whole experience. I came back thoroughly inspired and energized…”

*Sudheer: “I feel wonderful after attending my first convention. Many informative talks and presentations and a great deal of suggestions on dealing with the hearing loss. I have learnt many new things here, which I intend to practice regularly.”

*Barb: “I had a blast at my first (full) SWC Con, and G-d willing I’ll be at next years…Not only did I have a great time & enjoy the speakers, and almost forgot, chatting with the vendors too, but can also say another highlight most definitely was meeting so many wonderful people. My expectations for this trip were far exceeded, and I’ll never forget it.”

*Michele T: “This was my very first Con experience and it was such a remarkable experience. I did learn a few things but mostly enjoyed connecting with others who UNDERSTAND what I’m dealing with. There’s no comparison to finding another that truly “gets it” and you all do! I am proud and thankful to be a part of our group.

The 2013 SayWhatClub convention was held May 15-19th in Williamsburg, VA this year. “New Options in a Timeless Setting.” We were right across the street from the College of William and Mary, one of the oldest in the USA at the Williamsburg Hospitality House (soon to go out of business to be a part of the dorms for the college above). Colonial Williamsburg a short stroll away with the streets shut off to normal traffic and 18th century homes and businesses lined the street. New options included nearby Busch Gardens, shopping centers and plenty of restaurants to eat at.

The convention kicked off with a welcome party in the hospitality room. SWC volunteers man a table just outside the room to hand out name tags and give us a bag filled with goodies.

Hospitality table volunteers

bags

name tags

The picture on the name tags is a reprint of a picture painted by Joyce for the silent auction.

Once inside the hospitality room, we find old friends and greet new ones. Deserts, coffee and tea were offered while we mingled as camera flashes went off. Some people were delighted seeing each other again from previous conventions and newbies tend to be a little shy at first staying on the edge. It doesn’t take long to get them up and talking with the rest of us. After all, this is hard of hearing culture and we like to make sure no one feels left out.

Diane, Neil and Brenda

Cynthia, Diana, Elaine and Marti

Rhonda and Wendy

Tom, Ray and Don

Rhonda, Regina and Michele

As the night goes along, I noticed people picking up each others name tags to check and recheck names. (Looking at the name tag gets the information across faster with less repeats.) No one takes offense when someone walks up and picks up their name tag, it became routine really fast. Plus we meet so many people that first night, it’s hard to remember who is who. Later we check name tags again to see what list that person was on. Later still, we are looking at the same name tag again to figure out where we came from. Everyone is smiling and laughing even if we had a long day of travel.

Afterward, many people chose to go to bed but a few of us went to a bar across the street called The College Delly to visit some more. They had a nice patio setting which is easier on our ears than the inside. We aren’t there to drink so much as carry on the conversation and get to know each other more. Here we catch up and include newbies with past stories. If someone didn’t hear a joke or story, we’re sure to fill them in. There’s plenty of laughter too. We may be short on hearing but our sense of humor more than makes up for it.

Erica and Josh holding up pictures of friends who couldn't make it this year.

That night I feel asleep late but with a smile on face so grateful to be part of this amazing group of people. I feel like I’m home with my people.

The next morning workshops start and our first one featured Gael Hannan and Ear Rage! “I lost my hearing and I want it back.” She told us stories to make us laugh. She acted out scenarios showing us that maybe hearing loss isn’t so invisible after all. She encouraged us to be proactive with our hearing loss and recognized the fact we have bad days.

Geal Hannan

 

Ear Rage!

The next workshop featured all three cochlear implant (CI) companies, Advanced Bionics, Med-El and Cochlear America. Each representative talked about their product and each company seems to have it’s special features. All three representatives were friendly and good about answering any and all questions.

Workshops ended for the day around noon. At least 30 of us gather in the lobby to walk together to the The King’s Arm Tavern for lunch. It’s in the heart of Colonial Williamsburg keeping to the colonial ways. Waitresses and waiters are dressed in period attire for the 18th century. It’s typical southern fare, meaning good eating. We fill an entire room and with SWCers only and the staff was pleasant and accommodated our hearing loss. Ever been a room full of hard of hearing people? Have I mentioned we are loud? We still manage to communicate whether it’s talking, lip reading or some signing and the laughter never stops.

walking to lunch

 

riding to lunch

 

King's Arms Tavern

King's Arms Tavern, the line up

 

waiting for our lunch room

 

friends and more friends

role model?

 

a nice guy

Many of us split up after lunch to tour the area by ourselves or with a group of people. That night we gathered once again at the College Delly for dinner and $1 Coronas. Some people came for a while, then left as others drifted in. Some of us stayed the whole night but at any given time we had at least 20 people in there. We bonded, we created memories and we laughed some more going to bed late.

smiles

 

Barb, Steve and Regina

Brenda holding Kristen and Amy

Chelle holding Kristen and Amy

Rhonda, Mary Lou and Shari

Sudheer and his daughter

 

Marti, Tom, Susan, Lorne and JoannDonna!

 

Rhonda, Mark and Erica

 

a whole table full

I went to bed very tired but drifted of with happy thoughts and feeling blessed again. As our convention booklet says, “We might arrive strangers but we all go home friends.” By the second night, we know this is true.

To be continued….

Working With Hearing Loss

In Employment, Hearing Loss, Life on May 15, 2013 at 12:00 am

When I was 13 years old, someone taught me how to french braid hair and that pretty much sealed my fate. I practiced and practiced until I got good enough to braid several girls hair during school breaks. I loved playing with hair and knew I wanted to go to beauty school right after high school.

For 26 years now I’ve been doing hair. In my career, I watched a few hairdressers who continued to work up into their 80′s and I figured I’d be one of those too. I’d come in a few days a week for those dedicated clients and for the socialization. I didn’t think of retirement. I wanted the smell of perms, the sound of hair dryers and all that chatter that went with it.

For 23 of those years, I’ve been wearing aids. My hearing loss is progressive and it started to get in the way at work about eight years ago. At first, I couldn’t understand people on the phone occasionally then it went not understanding them half of the time. The clients in my chair repeated often and they were patient because I told them I didn’t hear well. Then I couldn’t hear people with my blow dryer on and it eventually got hard to hear people when another hairdresser or two (or three) had their blow dryer on.

My hearing loss progressed so much that when I moved to Salt Lake and tried to start again (I didn’t realize how trained me and my old clients were), I had a helluva time. This is when I found out noise renders me deaf. I went to work in a big, beautiful salon which was an acoustic nightmare. Seven hairdressers with at least seven clients made for a lot of noise which bounced around wrecking what little hearing I had left. I could not hear if more than three of us were working at a time. I became a deaf, mute, boring hairdresser which was not good for building a clientele in a new city. Daily frustration and anxiety plagued me so I quit. I couldn’t do it that way anymore.

I found a job working in an assisted living salon. Only two of us worked at a time but hair dryers and blow dryers could overwhelm my hearing. However! These were older people who for the most part either experienced hearing loss themselves or understood it because their significant other had it. I worked there for over a year and truly enjoyed the people I worked on. Too bad the boss continually shorted my checks and started erasing tips. I quit and tried looking for another assisted living salon to work in and found nothing open. It seemed once hairdressers found that little niche, they dig in and stay, except for the lady I worked for. She didn’t keep anyone long. Discouraged, I gave up doing hair for a few years.

Last summer I moved to a small town and found a one person salon. Maybe I could do hair again? I could control the noise, the radio volume and only one blow dryer would be on at a time, mine so I started to work again. The acoustics weren’t the best but overall, I heard better than normal in salons. Unfortunately, the town was too small and I couldn’t make my way. Options opened up again in Salt Lake City for other areas in my life but what about work? Small salons seem to be nonexistent in big cities. I’ve seen ads for studio salons (one person) for rent but there’s no way I could afford that without a clientele. What to do?

Scenes from working in Salt Lake a few years before flashed through my mind. The foremost scene was that awful experience in that big, beautiful salon. No way did I want to go through anything like that again. Then I thought about my time in the assisted living salon and how much I enjoyed working with the people there. Thoughts upon thoughts tumbled around in my mind. The what if’s started…

If I was totally honest with myself, I mostly worked with retirees and snowbirds since I’ve been doing hair. I get along with them best and they seem to like me. I know I’m supposed like working with all ages but kids are too hard to hear and young adults want wild colors I’m not wild about. What if I recognized that older people are my niche, my preference? To me, they are much more interesting people to talk with. How can I make this work with me?

Thinking…thinking, the wheels turning. What if I became a mobile hairdresser? I’ve done it for friends and family in the past so why not make it a business? It wouldn’t take much to start because I already have most of the equipment.

What if I catered to those in hospice care and the home bound? Maybe I could give them a little happiness and make enough to live on. I bet they would teach me a lot too. If I could make this work, it would be ideal for my hearing loss also because it’s a one on one situation and I get by lots better that way. Maybe this could work for everyone???

So the puzzle pieces started coming together. Within a week of moving back to Salt Lake, I checked with my the licensing department who told me to go to the city health department who told me to go to the county health department. There were a few hoops to jump through but I got it all done. I’m now waiting for my business license to come to begin.

Will I be able to make a living at it? I sure hope so. It feels right and for the first time I’m not stressing out about it at all. I feel sort of adventurous. I’m not looking to make a killing, I’m looking for a way to do what I love until I’m 80, like I originally planned in spite of my hearing issues.

Working with hearing loss can be a challenge but it’s not impossible. Not to say there isn’t a crushing blow now and then but who doesn’t have their challenges and setbacks in life? Afterward, healing time is allowed and I’ll admit, it took me over two years to want to do hair again after all the problems I had with my hearing and a shortchanging boss.

After that, I had to rebuild my self respect and I needed the distance/time to look back over it objectively to see how I could do things different in the future. Thanks to my family motto “It’s not a mistake, it’s a learning experience,” I keep learning and moving on. Thinking outside the box seems to help too.

Audrey Hepburn once said, “Nothing is impossible, the word itself says ‘I’m possible!”

Hearing Loop

In Assistive Listening Devices, Hearing aids, hearing loops, Hearing Loss on May 4, 2013 at 1:20 am

My first hearing loop experience was at the Hearing Loss Association of America (HLAA) convention in Rhode Island last year. At my first workshop, one of the coordinators announced that each workshop was looped so be sure to turn on our T-coils. Excited to try this technology I’ve only heard about, I turned mine on. It took less than five minutes to be totally amazed. I heard so well, I felt like a hearing person for the first time in years, watching the speaker instead of the CART screen. The clarity through the loop was a hundred times better than using an FM system. As a bonus, I heard through my hearing aids alone instead of borrowed earphones or neck loop wondering where they were last and were they cleaned and sanitized? This time I simply pushed a button on my hearing aid and I heard. Why wasn’t there more of this available in America?

I had to find a way to share this technology however I could at home. I wanted other people to experience it and know the difference too. On our local Walk4Hearing committee we had Kristin who works with Listen Technologies. In the past, they supported our Walk with assistive listening devices but I knew they were getting into hearing loops too. Could we loop our Kick Off party for the Walk? Yes, she was willing to set that up for us and even better, she could probably set up a portion of our stage area at our Walk in the park too.

The Kick Off party was small but those of us who were there with hearing aids or cochlear implants, used out T-coil. We sat at our tables and heard the speakers. Listen Tech also looped our registration table making hearing above the noise a piece of cake. The day of our Walk, lots of people showed up and there were signs posted everywhere encouraging people to try the hearing loop. During our entertainment which happened to be a clown who told lots of jokes and stories, I looked around and saw people with hearing aids and CI’s laughing along with the rest of people. Later, speeches came through loud and clear making it a memorable Walk.

Kristin of Listen Tech.  They provided  ALD’s at the Walk as well a hearing loop.

Last week, Listen Tech held a convention for their distributors. They invited some of us from the hearing loss community to come to their hearing loop workshop portion. Juliette Sterkens, AuD from Wisconsin spoke first and she gave the best presentation on hearing loss I’ve heard. She talked about who is losing their hearing and why. She explained audiograms. She talked about high frequency hearing loss (the most common type) and what’s it like; how we hear vowels better than consonants and how our mind struggles to fill in the missing pieces.

Giving a visual example, on the screen appeared the sentence, “She saw oars bobbing.” Beneath it was missing letters. Take away the original sentence, she filled in the gaps and it became “She saw cars fueling.” She also ran audio recordings to show exactly what hearing aids pick up in churches, court rooms and restaurants. Then she played a recording of what it sounded like through a loop. The difference is astounding. The hearies in there were beginning to understand our world a whole lot better. (You got to share the link above with hearing family and friends.)

She went on to explain that hearing aids work best within a four foot range picking up the closest and loudest sounds like coughing, papers rustling, babies crying. The speaker twenty feet away is lost in the noise that surrounds the hearing aid user, unless using the loop. The loop brings the speaker right to the ears and cutting out surrounding noise.

Five of us who were hard of hearing sat in the back of the workshop at a looped table where it was impossible to lip read… and we all heard every word Juliette said without the benefit of CART. Normally in this kind of situation, I have to arrive early and make the presenter aware of my hearing loss. I ask them to wear my FM system and face me as much as possible because I use lip reading too. I stake out my position up front and in the center where I still very much struggle to hear. After two hours, I’m exhausted mentally and physically. Here, Juliette talked for almost two hours and I felt no fatigue at all.

How we saw Juliette from the back row.

How we saw Juliette from the back row.

Our looped table.

Our looped table.

The incredible loop set up at the conference let me hear audience participation as well for the first time in many, many moons. Every chair had a wireless microphone. To ask questions or add comments to the discussion, we each had to turn the mic on which also fed into the loop system. To top it off, a screen at the front of the room had each microphone listed in a diagram. The seating was assigned so anytime someone turned their microphone on, their spot in the room was highlighted red on the chart and their name listed to the left of the diagram. What a fabulous system, incredibly inclusive, for anyone with or without hearing loss.

Microphones were in front of each chair.

Not the best of pictures of the chart up front but hopefully you get the idea.

The chart showing who was talking and where. This isn’t the best of pictures but hopefully you get the idea.

The first half of the seminar was about hearing loss. The second half was the technology side of hearing loops and were invited to stay. I’m not a techie but I’ll try to do it justice here… A loop system consists of an audio source, a loop driver and wiring. Cables or loops are laid around the room according to size and specifications creating a magnetic field which hearing T-coils pick up. It brings sound direct to the ear eliminating audio distance. There are various choices of loop drivers and different ways to layout the wires according to the needs.

As I understand it, past looping systems (which started in the 70′s) had lots of problems which turned off both the users and the people who bought them. Today’s technology has improved by leaps and bounds. Qualified installers are able to get beyond the biggest problems which are over spill and metal interference. Over spill happens when one loop system spills over into another looped room but this can be eliminated with different wiring and layouts. I didn’t understand how they get around metal interference but they do with various techniques. They showed us 6 different layouts and discussed common pitfalls and fixes. All I know is the loop systems I’ve experienced in this last year have delivered terrific sound.

Hearing loops are my favorite way to hear. There’s other technology out there with bluetooth being touted as the next big thing. I have a bluetooth device that connects my hearing aids to my phone. It drains the battery on my hearing aids, the bluetooth device itself and my phone super fast. It’s handy but it comes with a price. Using my t-coil doesn’t drain my hearing aid batteries any faster than normal so I keep them longer.

When you see this sign:

telecoil ALD sign

Turn on the t-coil in your hearing aid and give it a try. (Signs are required by the ADA.) Many tourist sites and tours in Europe are looped and it’s gaining popularity here in the USA. Recently the New York subway system was looped in certain places and a taxi company in NY will be looping their cabs soon. Quiet a few churches are getting loops here as well as some colleges, auditoriums and senior centers. For a personalized touch, people are getting their living rooms looped for a higher quality television sound too. How about some places we’d like to see looped: drive thru’s, bank windows, theaters and meeting rooms. It’s a world of possibilities.

There's Juliette in the red in the back row, Kristin of Listen Tech and me in the brown. The others are great local advocates in our world here.

There’s Juliette in the red in the back row, Kristin of Listen Tech and me in the brown, plus the other local hearing loss advocate extraordinaires. 

Here are some further links to check out:

http://hearingloop.org/ David Myer’s site

http://loopwisconsin.com/ a site Juliette Sterkens runs

Audio Induction Loop via wikipedia

http://www.hlaabq.com/LoopNM.html Loop New Mexico campaign

HLAA’s Get in the Hearing Loop

http://www.aldlocator.com/ Assistive Listening Device Locator

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