Meet Mary McQueen and Luigi

Editor’s Note:  A cookie bite hearing loss is a less common, generally hereditary, mid-frequency loss.  Thus named because of how it looks on the audiogram– like a cookie with a bite taken out of it. See audiogram below.  Poor speech discrimination is characteristic of this type of hearing loss.  

Cookie Bite Hearing loss

When my genetic “cookie bite” hearing loss worsened to the point I could no longer discriminate enough speech to get by, my mind conjured doors and windows closing.  I think we who dwell between hearing and deaf can be gravely disadvantaged in the workplace.  Never mind all the other places.  I think we should band together somehow for employment.  I’ve been a SayWhatClub member for months, and have read a depressing number of posts from members trying to cope with exhausting and inappropriate phone work or note taking for their jobs.  I was recently on a medical leave because of the stress of not being able to tell what my boss was saying.  I have no idea how successful self-help organizations are, but to me the best scenario is being our own bosses.

My job title is administrative assistant.  I hate clerical work.  The pay sucks. And because I can no longer tell what people are saying in job interviews, I’m worried about being stuck in my pink ghetto job forever.  I’m only 50.  My deafness feels like a nail in the coffin.


However, I didn’t end up in the ghetto in the first place because I’m deaf—I had a misspent and extended (yet entertaining) youth doing stuff like being in an all-girl punk band that never performed, because we couldn’t play instruments.  Yet, we made appearances and trashed hotel rooms (then cleaned them up).

Child bride/child divorcee; infamous party hostess in 1980’s Vancouver, Canadian hillbilly squatting in a shack on a remote island, private investigator who never earned enough to pay rent and eat at the same time, yearlong guest in a Benedictine monastery doing manual labor for room and board etc.  Then I was suddenly 40 and turned to office work to keep a roof over my head.  Age narrows the scope of occupation possibilities.  This is natural.  Being a Bohemian hillbilly in a shack working at odd jobs is adorable at 26.  At 50 it’s crazy lady, plus how would one finance the life in middle age?


Suitable training choices are narrowed by deafness.  For example, one friend said, “you would have made a good nurse; why don’t you go back to school?”  I thought, yes, that will go over well with the doctors when I have no idea what they are saying no matter how many hearing aids are coming out of my ears or FM assistive listening gadgets are hanging around my neck.

“…15 mg of haloperidol!” barked the emergency room doctor.  Nurse Mary asked, “was that ONE FIVE or FIVE ZERO?”  “GET ME SOMEONE WHO CAN HEAR!” screamed the doctor, glaring at Mary and pointing a bony finger at the door as the psychotic patient whirled like a dervish in the opposite direction heading down the hall towards the cafeteria.

LUigi the lovebird

My goal now is to learn how to make enough money as a working artist and leave the hard of hearing and clerical stress of the workplace behind.  Meet Luigi the Lovebird… he’s the yellow guy shredding my audiogram.

luigi and audiogram

Luigi shredding Mary’s audiogram. 

Luigi’s mission and vocation is to shred paper into perfect strips.  Don’t leave money or library books lying around is all I can say because Luigi is free range and home alone, without supervision, much of the time.

Because I have a strong creative drive, a few years ago I got the idea to make collages with the paper he cut with his beak and turn art prints of the originals into greeting cards in my home studio and aviary.  Mostly aviary.  I live inside an aviary basically.

We are the first generation of inter-species folk artists!  Here is the link to a captioned video featuring Luigi shredding:

Luigi is so inspirational that a grade 6 art class who heard about him did their own shred collages!  We visited the class and saw the student masterpieces.  Luigi tried to shred one of them.

 mary and luigi visits grade six class (1280x959)

 Mary and Luigi Visiting a Grade Six Art Class

If the horrible stress caused by poor speech discrimination in the workplace and the fear of being trapped in the pink ghetto makes me finally find a way to earn my living as a full time creative, then I will say thank God I was bitten with the cookie bite hearing loss at birth.

Note:  Since this writing, Mary and Luigi have appeared on Dragons’ Den, a Canadian television reality show.  The show is about aspiring entrepreneurs who pitch business ideas to a panel of venture capitalists in the hopes of securing business financing.  You can see a captioned video of their appearance here:


Mary is a 50 year old free spirit, raised in Vancouver BC with 2 sisters who were also bitten before birth by this crazy genetic cookie.  She wears hearing aids and, depending on the speaker, uses an FM Assistive Listening system in the workplace.  As mentioned above, Mary currently lives inside a free range aviary with her muse Luigi and a second bird named Binky, in Victoria BC.  She is happy to have found SWC, and we are happy to have her.  To see more of Luigi’s shredding technique, go here:

Disclaimer:  By providing links and/or references to other websites, the SayWhatCub in no way implies endorsement of the website content, operator or administrator, information, materials, products and/or services for sale.

The Phone and Hearing Loss

The phone is all about being social and getting information. It’s one of the first places hearing loss is recognized. Repeats are more common than in person; why? Because it’s a disembodied voice with no way to lip read or observe body language, all the little clues used without realizing it.

As I talked on the phone to my mom in the early 90’s, she stopped the conversation and said, “For God’s sake, will you get some hearing aids?” So I did and we thought that fixed the whole problem. I continued to have problems understanding some people over the phone. Some women came across too high pitched. Operators used headsets with the mouth piece too far away. Some mens voices came across as rumble without distinguishable words. The T-coil in my hearing aid helped but some words, names and numbers took more repeats than I though necessary.

Volume must be the answer. I tried pricey phones and cheap phones, looking for a good volume level. My best phone turned out to be a cheap, plastic red one that hung on the wall. It sounded louder than the more expensive ones. If I didn’t already know I had a hearing loss, cordless phones proved it. Ours came with a high/low switch but even on high, people sounded far away. The convenience of wandering around the phone was nice but all the “huh’s and what’s” got on my nerves. I went back to my cheap red phone, buying a longer cord so I could travel around the house with it.

In the mid nineties my hearing dropped again. I tried several phones but none seemed to be loud enough. My husband suggested calling the phone company because he noticed we paid a deaf tax on each bill. I called and they offered a TTY for the deaf or voice carry over (VCO) phone for the hard of hearing. After providing proof of being hard of hearing (who would want to fake that), they delivered the VCO. Excited, I listened as the representative showed me how to use it.

  • I called a relay number.
  • The relay operator dialed the number I wanted.
  • A small delay as the relay operator explained to the person on the other end how it worked.
  • I talked like normal on the phone and used GA (Go Ahead) at the end of conversation to let the other person know I finished for now.
  • Then I listened to silence as I watched a tiny screen with words scrolling across. When I saw the GA it was my turn again.

Talk about impersonal! I used the relay service only to call hotel operators or help lines. My friends suffered repeating because they too didn’t like the relay service much either. This phone had great volume control, a dial I could move up and down. If a family member picked up my phone without moving the dial down, they yelped and squinched their eyes while fumbling for the control. I liked that phone.

As my hearing continued to drop, I strayed further and further from the phone. I didn’t call friends to chat, I called them to set up times to get together in person to chat. At work, I let the phone ring one or two times, hoping someone else might get it instead. Understanding who they wanted to talk to on the phone could be a chore. Was it Shari, Chelle, or Terrie they wanted?

Then there came a big drop in hearing and the phone became a true struggle. This how I heard at work, as a hair stylist:

  • “Hello, this is the Salon. How can I help you.”
  • “I a a oo L..E.”
  • “I’m sorry, who do you want to talk to?”
  • “Lindsey.”
  • “Oh, she’s not here right now, can I help you with something?”
  • “I an et my R Ee…”
  • “I’m really sorry. I can’t hear very well, can you repeat that?”
  • “I want a weave.”
  • “Oh okay. The soonest she has open is….”
  • “Thank you.”
  • “Can I get your name please?”
  • “Annie.”
  • “Okay Annie, your appointment is… what?”
  • “That’s not my name, it’s Stephanie,” she said talking louder, sounding more annoyed.

Another whole round of misfires and repeats came next as I tried to get a number to go with the name. Most phone calls when like that and there were some who I couldn’t understand at all. The girls I worked with in Arizona helped me whenever I needed it, taking over phone calls which sometimes could be my own client.

In Utah, the other girls were too busy to rescue me so I struggled through it until I began to loathe the phone. The heavy dread feeling carried over into my personal life and I stopped calling friends almost entirely. I lost a few friends who didn’t understand. As you know from my previous post, someone at work kept pressuring me to answer the phone and I quit all together.

After that, I started being very picky about who I talked to on the phone. My mom, my sister (who repeats without irritation), my boyfriend, one girlfriend who repeats all the time but doesn’t mind and maybe my kids here and there. If I don’t recognize the number, I won’t pick it up. The message on my phone tells people I’m half deaf and to please email or text me instead.

Texting is a godsend, isn’t it? Teenagers did it all the time so I stopped my daughter one day and had her teach me. Then I taught my mom who thought it was wonderful because we could keep in touch daily for the first time. Slowly, more adults learned to text and my world expanded. My tax people text, my audiologist staff will text and I even got a dentist office to text me for an appointment.

Then came web captioned services. There’s a small delay but it worked so much better than the VCO phone. We talked back and forth as normal except I had captions to go along with it. I loved it when my one girlfriend went on a rant over the phone. Her voice crackles, maybe due to all the smoking. When she’s upset or angry, she talks twice as fast as normal. I can’t keep up with her and neither can the relay operator who gets a few words in and then types, “speaker unclear” every couple of minutes. I laughed and my girlfriend laughed when I told her about being unclear. The relay operator caught more than I could at any rate.

Now there are captioned phones. I didn’t have a land line but they told me it would work through Magic Jack so I got one. People sounded so far away, not even the relay operator could barely caption it. There were big gaps of “speaker unclear.” Then my Magic Jack quit working. Magic Jack couldn’t figure it out in one phone call so I gave up. Some day soon, I’m getting a land line to try it out again. I’ll need it for work when I start again, which will be in the next month. I hear from others how much they like their caption phone and I hope it works good for me.


Phones: (Just to name a few, help me add more)

Caption Call


Clear Captions


Captioned Services on the Web: (Again, help me add more.)

Sprint Cap-Tel

Hamilton Cap-Tel

AT&T cap-telI



What do you use to communicate on the phone?

A Hard of Hearing Hairstylist


hair salon

At 13 years old, someone taught me how to French braid at school and from that moment on, I knew I wanted to be a hairdresser. I loved playing with hair and making people happy. After graduating high school, I attended beauty school. A few months later, tinnitus struck and hearing loss followed. By 23 years old, I wore hearing aids. I continued to do hair for the next 18 years, taking a few breaks here and there.

My first pair of hearing aids were analog. I wore them all day at work which soaked up all sounds, even the ones I didn’t need or particularly want. Blow dryers grated on my hearing aids like a salad shooter, all day long. It could be my blow dryer or someone else, it didn’t matter. By the time I left work, my head pounded and my teeth ached from clenching my jaw. I took out my hearing aids before leaving the parking lot. The muted world restored my sense of peace; my jaw unlocked and my head throbbed less as I drove home. I didn’t usually put them back in until the next day right before work. Hearing at worked seemed more important than hearing at home. My family allowed me the much needed hearing break and I’m grateful for that.

Only occasionally did I tell anyone I had a hearing loss. I feared rejection so I faked my way through many conversations while blow dryers roared. I looked at the other beauticians with envy as they effortlessly chatted with their clients through all the noise. The noisier it got, the louder voices got. When busy, the place buzzed at low rumble making me double my effort to hear.

One day one of my clients said something while a hair dryer raged in the booth next to us. Since I was cutting her hair, I missed watching her talk. Her tone seemed neutral and when I looked up, her face didn’t show any emotion. I snagged one of my all purpose phrases and said, “How nice.”

Her eyebrows shot up and her mouth dropped open. I knew my answer missed by a long shot.

“I’m sorry. I’m hard of hearing,” I confessed. “I didn’t understand what you said. Can you repeat that please?”

“I said my sister nearly died and is in the hospital. This will be my last haircut for a while so I can go home and help her.”

I felt like a complete idiot. How on earth did I get that so wrong? “I’m so sorry! I hope things get better fast and I’m sure she will like having you with her.”

Snowbirds, people who go south for the winter, are common where I worked in Southern California. She went home and came back the following year. Thank goodness I hadn’t scared her off with my bluffing. In fact, she caught on to the whole game like an expert.

“Did you hear what I said?” she asked from time to time.

Sometimes I said yes and sometimes no. I give her credit for the start of breaking my bluffing habit. I learned not to be ashamed of my hearing loss because people generally wanted to help me, not scorn me. Other people started outing me around the same time and I found out it’s much easier to be upfront about it than hiding it. I feared rejection unrealistically. It didn’t happen and I kept building clientele.

As I became more upfront about my own hearing loss, it made a good topic for people. Many a customer had a husband who had a hearing loss. Their husbands tried them for a few weeks and put them in the drawer. By this time, I knew all about hearing loss and hearing aids (thanks to SWC). I gave them ideas and recommendations to take back home. I also cautioned them about the limits.

A few clients wore hearing aids themselves. We understood each other perfectly! We talked about their haircut/hairstyle before they took their aids off. After that, I made sure to face them while talking a little slower, if I asked more questions. For me, I felt a sense of relief not having to make small talk. For them, they were happy to find someone who understood at last and didn’t have to participate in chit chat either. I only had a few of them. Too bad I couldn’t get more hard of hearing clients.

Hearing on the phone at work tested my limits depending on background noise. Even though the t-coil made it easier to hear on the phone, blow dryers managed to work their way into the phone calls anyway. If not that, the caller’s screaming kids or loud TVs in the background made scheduling their appointment a chore and my progressive hearing loss only made it worse as time went on.

My biggest fear was getting a haircut wrong. I made sure to turn the chair around so they faced me or I stood in front of the mirror facing them to make sure I heard right. I listened with my entire being and repeated back what I thought I heard only in different words. I’m happy to say I didn’t give anybody the wrong haircut or hair style.

In spite of my love for doing hair, two times I quit to try something else for a steady paycheck. (Hair stylists get only a percentage of what they make or pay rent. Some weeks are good, some weeks not so good.) After a year or so I went back to hair. I missed the socializing, the variety of cuts, colors and perms making it something different every day. Once a hairdresser, always a hairdresser. I saw myself doing it until 80 years old, working a few days a week just to keep with it. My hearing continued to drop but my clients and I continued to adapt. No longer did I have a problem saying;

  • “Sorry, it’s a bad hearing day. My ears are ringing!” Or…
  • “I can’t hear with the blow dryer on, can we wait until I turn it off?” Or…
  • When answering the phone and a few repeats later, “I’m sorry, I’m hard of hearing and I can’t seem to understand what you are saying. Let me pass the phone off to someone else.” Or…
  • “I let my hearing aid get run over so I have lopsided hearing for a while. Bear with me,” which brought me to the digital age. I heard better but my natural hearing wasn’t replaced.

Then I had a big drop in hearing due to stress in my personal life. I passed the phone to others more and more. If I couldn’t understand someone in my chair, I brought one of the other hairdressers over to translate for me. I worked with a lot of good people who helped me when I needed it. One lady I worked with Dian, had a deep strong voice. I could hear her above everything else with little effort on her part. She patiently helped me many times by taking the phone or listening to walk-in customer whose voice was out of my range. Sometimes the noise in the salon would be so great, I never even heard the phone ring.

“Michelle,” Dian called out.* I looked up right away. “Phone,” she said, jerking her head towards the front desk. As I looked over to desk, another girl held the phone who now had my attention.

“I called your name like 4 times,” she complained. “Why didn’t you hear me?”

I shrugged. “She has a better voice for me.”

She rolled her eyes and said, “I’m going to buy a Nerf ball to get your attention. Anyway. Phone for you.”

Not always could hear the phone ring when the salon bustled. I’d hear something far off… was it my tinnitus or did the phone really ring? I looked around at the others until someone nodded letting me know the phone needed to be answered. Not wanting to appear being a slacker, I brought in my volume control phone which had a great ringer. For a few days they tolerated it but Dian approached me after a mass meeting on their part to tell me it scared them half to death and they would rather have it off. They agreed to let me know when it rang. Another bonus; they wouldn’t use my phone because it blew their eardrum out. One girl wore so much makeup it rubbed off onto phones so I didn’t have to clean the phone I answered anymore.

My co-workers, my clients and I were conditioned to my hearing loss. I had no idea how well trained until I moved not only to another city, but another state and started over.

In the big city, I found job at a beautiful, modern salon. It was the most beautiful salon I ever worked in. Sleek looking with windows all over and very few decorations. The place reeked of professionalism. White walls with some accent green stood bare and a unique rock wall backed the shampoo bowls. A gleaming hard wood floor with a basement below ricocheting each boot step like a bullet. Seven people at seven stations with seven blow dryers with at least one being used at a time and sometimes up to four of them roared.

Acoustics played hell on my hearing aids. I didn’t know the words for it but for the first time in my life, noise rendered me deaf. I couldn’t hear the person sitting in my chair unless I turned them around to face me which played havoc on my scheduling. People want to chat, make friends and bond but the environment didn’t allow me that opportunity. Clients didn’t come back because I stood there mute cutting, coloring or styling hair. I became a boring hairdresser.

Not only that but something in the salon made my t-coils buzz so I couldn’t use my hearing aids to answer the phone. The unspoken rule is the newest person answers the phone because everyone else is busy and it gives the newbie a chance to build. Even with my volume control phone, I could not get names and numbers right as people repeated over and over. A few people heard my voice and automatically said, “Never mind. I’ll call back later.” I went home grief-stricken each night.

For two months I strained to answer the phone before I went to the boss. She said she heard all my struggles with it and felt bad for me. We decided I would take towel duty (washing, drying, folding and putting them away) and we would let the phone ring through to the answering machine. The others would pick up the messages when they had a free moment but one co-worker resisted. She thought we lost customers by doing that so pressured me to keep answering the phone.

“You do better than you think,” she said. “We can’t let customers go like that.”

The old me agreed. It’s the way it’s done but the newer, deafer me couldn’t do it. I tried explaining to her multiple times how difficult the phone had become. I couldn’t lip read. I couldn’t observe body language and I couldn’t get all the sounds I needed. Plus, I felt unprofessional on the phone. She refused to listen. (Listening and hearing are two different things.)

“If you can’t understand them, give the phone to me,” she said.

I tried that but it put her behind schedule. After a rough phone call I said, “This just isn’t working.”

She smiled and waved a hand, blond hair bouncing around her face. “Oh don’t worry about it. I had a hard time understanding him too.”

Every day I woke up dreading work and kept coming up with excuses to go in later and leave earlier until I couldn’t stand it anymore. My confidence was at all time low. I couldn’t perform the basic functions. What good was I as a mute, dull hairdresser? It takes personality and bonding to build a good clientele. I quit. I gave up.

A few months later I found another job combing through CraigsList working in a tiny salon at an assisted living place. I hired in with the condition that I didn’t have to answer the phone. I’d be happy to do anything else in place of answering the phone but I drew a definite line this time. It turned out I didn’t have to use it much because I could run around the building collecting people instead. Yay!

The little salon stayed packed through out the day except during meal times. I had a hard time hearing but most of the people there understood hearing loss. I didn’t have to talk through blow dryers. I enjoyed that job and the people I worked on. They appreciated getting their hair done and I bonded with them. I could have worked there for a long time.

But I didn’t. The salon business owner constantly shorted my checks and I had to haggle over every penny. I worked there almost a year and more than half the checks were wrong, in her favor. Sometimes she forgot to add whole days in. Then a clients daughter raised my tip to 25%. She initialed the file in pencil because we couldn’t find a pen. Next week when I went in, the tip was erased but still visible. I gave my two weeks notice.

It’s been over a year and a half since I’ve been in a salon. I’m itching to do hair again but I need to be very selective. The salon has to be small. There has to be things on the walls to soak up sound and no more basements. Caption phones are available and I couldn’t work without one.

Can I? Dare I? I miss the smell of perms and even the sound of the dang blow dryer. I miss people and cutting hair. I’m thinking about it. I’m thinking real hard.

*Although I’ve been Chelle most of my life, Chelle became hard to distinguish between Sherry, Terrie and Tammy. All I heard was the E sound at the end prompting a repeat. Being called Michelle at work made it easier to pick out my name.