Shifting the Communication Burden

As a person who is deaf/hard of hearing and uses bilateral cochlear implants to hear, communicating during the pandemic has been auditorily, mentally, psychologically and even physically challenging.  

Auditorily, I struggle to hear people speaking behind masks which cut off any visual cues that might help me and physical distancing means that their voices will be softer.  Masks with clear windows or even face shields can provide additional visual cues but at the expense of compromising the speech signal even more. 

Mentally, the additional cognitive load that is required to make sense out of the bits and pieces of what I hear and don’t hear has me exhausted by the end of the day.  

Psychologically, I get frustrated and angry and sad and feel all the feels, because communication is so hard but at the same time I crave (SAFE!) interactions with people outside of my home.  

Physically, I struggle not to drop and break my cochlear implants which cost about the same as a decent used car, as I take my masks on and off and everything gets tangled in my hearing equipment, my glasses and my long and flowing COVID hair (which is the longest it has been in at least 30 years).

The other phenomena that I have been experiencing and apparently, many of my other deaf/hard of hearing friends have, too, is that I find myself leaving my cochlear implants OFF more and more hours per day compared to pre-pandemic times.   I affectionately call this “deaf o’clock”.   With everyone being home, extra sounds, the need to concentrate on tasks at my computer…it’s just easier to leave my ears off.   A consequence of this, though, is that it means I am not stimulating my brain as much with auditory input which results in poorer speech comprehension ability (i.e., being able to understand what people are saying).   Think of it as “not practicing your ability to hear and understand” because we are essentially sitting here in silence.   It’s like trying to pick up French again if the last time you used it was in high school French class.

So, on the one hand, the pure physics of sound being compromised by masks and physical distancing preclude me from hearing my best through my cochlear implants.  On the other hand, I’m not perhaps at my peak performance because I’m not practicing enough.  The end result is the same…I struggle to hear and I’m exhausted.

I’ve decided to take all of these social media reminders and prompts for self-care to heart.   Some of you may not agree with this tactic or don’t feel safe doing this but I feel my visual and observational super powers kick in when I do this…I just go out in public with my EARS OFF and put the communication burden on the other person.  

You know what?   Deaf people who don’t/can’t use hearing aids or cochlear implants and hear nothing have always done this and they’ve survived and thrived. Communicating with people behind masks is not that different for them.

I mainly do this when I go to the grocery store.   Outside of home and work, this is basically where I go the most.   It’s completely LIBERATING to put on a mask like every other person who doesn’t have to worry about things getting tangled or situating it just right between my eyeglasses’ earpieces and my cochlear implant processors. The silence as I enter into a store is a bonus.   While cruising up and down the aisles to fill my cabinets and refrigerator, following the one way arrows and keeping at a distance does not require any hearing ability – it’s the check out that has always made me anxious.   I see the mask moving so I know they’re saying something but I may have no idea because not only are they behind masks, they’re also often behind a plexiglass shield which further dampens sound.  

I used to get really stressed and lean in to hear, sometimes people would pull down their mask and I would recoil and tell them to please put their mask back on (communicating with me is NOT more important than public health and safety) or I would go into full geek mode and pull out my smartphone and use a speech-to-text app where they would talk and their speech would be transcribed on my phone.  That’s a heavy load!

What I realized is that now when I enter into the store in deaf-stealth mode and reach the checkout counter, I point to my ear and shake my head, make eye contact with the checker, we share a slight nod of understanding and voila!  They get that I don’t hear.  This is where the magic happens….THEY are constantly looking up and down and around, point at things like the ever-rising cost total (did I really need those Pop Tarts?), give me a thumbs up and thumbs down to confirm I understood their pantomime and you know what??  IT WORKS!   They got their message across, I understood and I didn’t have to work as hard because they accommodated me rather than me having to work harder to come up with these accommodations where the burden is all on me. If something isn’t clear, they’ve even pulled out pen and paper to ask me a question.

I don’t do this for every situation, just ones where I feel that I can take a break and the communication is not that urgent and not worth the stress.  I also do this when I’m out and about and alone – I wouldn’t do this if I have to communicate with my family, friends or co-workers.

So, if you see me out in public and call my name and I don’t answer – please don’t be offended. I’m not ignoring you. I just don’t hear you.

Disclaimer: when I used to travel by airplane, I would also go into deaf-stealth mode because the quiet is blissful and gate agents seemed to remember the deaf woman who doesn’t talk vs. the deaf woman who has clear speech and they’re more likely to accommodate me with any flight changes. But that’s a blog post for another day…

Would you try this??? 🤔

Advacation: Cruise edition – requesting real-time captioning

Advacation

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Photo cred:  https://www.carnival.com/cruise-ships/carnival-sensation.aspx

In the dead heat of summer, my friend casually mentioned on a fb chat that she and her family were going to be celebrating New Year’s Eve on a cruise ship.  I was intrigued and then elated when I saw the “…” (indicating active typing) on our chat followed by “The invitation is there if y’all can go.”   A quick check with hubby and we (somewhat impulsively) decided that we would join them!

I hadn’t been on a cruise since I was 16 and my family had never gone so this would be an entirely new experience for us.  On the other hand, my friend, Lisa, had been on several cruises with different members of her family and was well-versed on the ins and outs of cruise life.  Lisa and I are both late-deafened – I am ASL-fluent and she knows a handful of signs.  We are both excellent spoken language communicators and rely on visual information and lipreading in difficult listening situations. This meant that in terms of accommodations to access any audible information such as public announcements or hear (and UNDERSTAND!) people on stage for a show, real-time captioning would be needed so it was accessible to both of us.

I have been deaf for about 20 years now but when I started my career in audiology, I had normal hearing.  The Americans with Disabilities Act (ADA) will be celebrating its 30th anniversary this year.

“First introduced in the 100th Congress, the ADA bans discrimination on the basis of disability in the areas of employment, public accommodation, public services, transportation and telecommunications. President George H.W. Bush signed the ADA into law on July 26, 1990.” [ref.]

As a former hearing person who now benefits from the ADA for accommodations, I am (unfortunately) not surprised at how often I have to remind the-powers-that-be what my rights are.   Most of the time, it’s a matter of educating them about these rights and providing them with resources.  They don’t know what they don’t know.  There have been other times where they just flat out seemed to want to refuse on principle.  In these situations, I tend to roll up my sleeves, dig in my heels and go into advocate mode. Getting captioning for this cruise was no exception – it was time to “advacate” (see definition above).

When you register for a cruise, there are sections where you indicate if you have a disability and what your needs are.   I just went down the rabbit hole to find the disability services pages for the major cruise lines and it was fascinating to see what they offer/don’t offer.

Cruise Line Accessibility

I couldn’t figure out how to easily add a table to this post but you can see a larger and clickable version of the above table at http://bit.ly/CruiseLineAccessibilityDHH.  Some of the information was really hard to find or not even listed on the website itself but rather on a form that you have to fill out. Click on the name of the cruise line in the table to go straight to their disability services page.

Here are the important points that you need to know:

  • Cruise ships, whether they are American or foreign, that cruise in U.S. waters are subject to the ADA.  [ref.]

  • These accommodations are provided to you AT NO COST so be sure no one is trying to charge you extra or insist that you bring your own accommodations on board.  This includes paying travel, lodging and incidentals for interpreters and captioners. [ref.]

  • Even if they don’t list them on their accessibility pages, you CAN request accommodations that provide you with EFFECTIVE communication (e.g., real-time captioning, ASL interpreter, tactile interpreter, assistive listening device, written scripts, preferential seating for access to visual cues, etc.) . [ref.]

This last point is the reason that I wrote this blog post.  NONE of the cruise line accessibility websites mentioned real-time captioning as an accommodation on the ship. *If* they offered any kind of communication accommodation, it was ASL interpreters and/or assistive listening devices – these were the two options offered repeatedly (!) to us.  Yet, for multitudes of deaf, late-deafened and hard of hearing individuals, real-time captioning might be the preferred accommodation for events like stage shows, musical numbers, trivia games, etc. because:

  • they don’t know sign language (e.g., my friend)
  • assistive listening devices can be ineffective if:
    • the microphone is not properly used (if the person is even using a mic!)
    • in large, reverberant and highly noisy areas
    • if the individual does not have good aided speech perception/word recognition skills (it’s like turning up the volume on a radio station that’s not in tune – it doesn’t help)

Here is my initial email to them:

Carnival initial email

One of the most important things I’ve learned about arranging for accommodations is be very specific about the accommodations that you are requesting.  They don’t know that I’m late-deafened and that I prefer captions for some things and interpreters for other things.  They don’t know that you might not know sign language (many assume that if we put down “deaf” or “hard of hearing” that we sign).  They don’t know that you need preferential seating so that you can speechread.   They don’t know that you don’t benefit from assistive listening devices.  They can’t read our minds so we have to let them know what works best for us.

Don’t wait until last minute to request accommodations.   If there are hiccups or cancellations, then hopefully you’ll have enough time to go to Plan B.   I’m somewhat of a hyper-planner (!!) so I started this process 5 months ahead of time.   Some of the websites ask for 60 days’ notice – I would probably start trying to plan around 3 months ahead of time.

Another thing I’ve learned is document, document and document.  Save all emails, correspondence, etc. so you have a paper trail in case there are any disagreements or misunderstandings.

Have a designated point-of-contact on the boat in case there are problems.   In our case, it was our captioner who had a direct line (a la “Batphone”) with the cruise staff.   We had a great relationship with our captioner so felt comfortable asking her to contact them if there were concerns.

Lastly, know your rights.    In the table above, there are some links to some case law as well as how cruises are covered under the ADA.   Be prepared to drop some of those links in your emails to let them know that you know you are entitled to effective communication.

“…cruise lines are prohibited from discriminating against passengers on the basis of their disability by “fail[ing] to take such steps as may be necessary to ensure that no individual with a disability is excluded, denied services, segregated or otherwise treated differently than other individuals because of the absence of auxiliary aids and services.” [ref.]

After going back and forth in emails, they ultimately agreed to provide real-time captioning after trying to force us to use ASL interpreters or Assistive Listening Devices.  I can’t help but wonder if it’s because I cited the judgment against them [ref.].  I don’t know if it’s because the person I was corresponding didn’t know themselves or if they really just didn’t want to offer captioning as an option.   I had spoken to several deaf/hard of hearing friends prior to this cruise and I *knew* that captioning was possible.   We just needed to be persistent.

Our real-time captioner, Julia, was WONDERFUL.   She had been a captioner on almost twenty cruises prior to this one and she was assigned to me and Lisa.   Luckily, Lisa and I wanted to go to the same events otherwise it could have gotten complicated.

When you arrange for an ASL interpreter or a real-time captioner, I highly recommend asking that the person be assigned to you or your group alone or that you know how many other deaf/hard of hearing people might be vying for their time.  This way you know what to expect.  The advantages of having an assigned person is that I can communicate directly with them and let them know on the fly where I want to go or that I’m pooped and I just want to take the afternoon off, ears off.  This is what hearing people get to do (decide last minute) so that should also be an option for us.  We tended to use her services in the evening for shows and performances but we had the option to use her for events in the afternoon as well.   We lucked out in that we were the only deaf/hard of hearing individuals on the ship.  The captioner said that she had been in a situation where she was the only captioner and there were multiple groups that had to agree which events she would caption.  Next time, I will definitely follow my own advice about requesting someone be assigned to me.

Not all captioners have/provide the same equipment but this is what our captioner had:

  • Stenograph machine for word-for-word Communication Access Realtime Translation (CART) transcription (same machine used by stenographers in a courtroom)

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  • Interface to make it easier to advance lines on pre-scripted material (lyrics to music during the shows)

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  • External monitor hard wired to her equipment so we could read the captions (yes, this show had lots of lyrics in Spanish!)

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  • Portable tablets so could read the captions

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Julia in the background while Lisa and I sit at the Piano Bar

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Our portable tablets at the Piano Bar

  • Harness for walking CART which we ended up not using (this could have been used for something like walking tours on the ship or off-boat if it was a ship-sanctioned activity)

CART-Captioning-For-Those-With-Hearing-Loss
Photo cred: https://captionpros.net/cart-captioning/

 

Despite having to be a bit assertive in the initial planning stages, this whole experience was outstanding.  I learned a lot and hope you learned something, too.   Planning ahead is key.

Happy (accessible) cruising!

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Confessions of a late-deafened adult

Facebook, LinkedIn and other social media outlets have been an interesting intersection of people in my life…those that have only known me as hearing, only known me as deaf and those that have known me throughout this whole hearing loss journey.  Recently, I’ve felt this tug to discuss the emotional and social barriers that come with having hearing loss.

Being late-deafened, I have the perspective of having had normal hearing, being hard of hearing and now deaf.   Just like the Kübler-Ross model for the stages of grieving the death of a loved one, there are Stages of Grieving Hearing Loss. This process not only affects the individual but also the family. Just as someone grieves the loss of a loved one, people who experience some sort of illness grieves the loss of their healthy self. Even now, eighteen years later, I sit here and think, “Wow. I’ve been deaf for eighteen years now.”

The purpose of this blog post is to address those unasked and unanswered questions, those awkward-away glances and yes, even those looks of pity or yearning for days when I was still hearing…those things that I know others have always wanted to ask but felt uncomfortable in doing so. I guess this is my way of expressing myself because I’ve had difficulty in acknowledging that elephant in the room…

No need to say, “I’M SORRY!”

I realize that some people say this automatically in response to certain situations.  I find that this is a similar reaction that people might have when they find out someone has died, or gotten cancer, or lost their job, or…_______. Look through social media and if someone posts with sad/bad news, there are often apologies abound.  I know that you know that it’s not your “fault”.

Along the same vein, to my friends with hearing loss: We don’t need to start our sentences with, “I’m sorry” either. As a female, I am very attuned to the fact that I often start sentences with this phrase (and I’m not the only one according to this article) and I’m trying not to. As a double-whammy, I used to say, “I’m sorry…I’m hard of hearing, can you please repeat what you said?” This is a habit that’s hard for me to break but I keep at it!

Do say, “What can I do so you can hear better?”

Here are some strategies that help me:

  • Going someplace quiet(er) – Noise is the inherent enemy of all people with hearing loss (and even people with normal hearing). Look around a noisy restaurant and you see people more intently staring at each others’ faces, leaning in closer or even trying to block out noise with their menu. For those of us with hearing loss, it takes a lot of work to hear in these situations. Some people are good lipreaders and some are not. Some people try to compensate in noise by changing programs on their amplification or even using hearing assistive technology (consists of a microphone worn by the talker and a receiver worn by the person with hearing loss). I love my friends who ask the manager to turn down the music! If we’re still struggling, consider moving tables, locations or even going to quiet hallway when you need to have a conversation.
  • Having good lighting – It’s hard lipreading in the dark!
  • Repeating what you said – Sometimes I just wasn’t ready to hear what you said or I heard the end but not the beginning. Also, there are some words that I might not hear so well in a noisy place so using different words can help (e.g., the office –> the room in the school where you work). Please be patient.
  • Let me know if the topic changes – If I miss something (because I didn’t hear it or because I looked away, etc.) which causes me to miss part of the conversation, I may never get back to the topic. LOL  I really appreciate my friends who often start their narratives with “changing topic now…”.
  • Face-to-face communication – Please don’t try whispering (or shouting) in my ear. One of my favorite sayings is, “Eye contact before ear contact.” I need to be able to see your face/eyes for speechreading and this doesn’t happen if you’re blindsiding me. If you’re holding something in front of your face (like a menu) or you’re not facing me, then I get lost, too. Have you ever heard someone say, “I can’t hear you! I don’t have my glasses on!” It seems somewhat counterintuitive but actually, this statement goes to point out how we need visual cues (including using our glasses) to understand someone better.
  • Indicating who is talking – I love it when I’m in a group and someone nods, waves or raises their hand when they want to say something. That makes it easier for me to know who is talking rather than looking for whose lips are moving.
  • If you talk fast, please slow down – You don’t have to talk super slow but just not really, really fast.
  • Knowing sign language – I learned sign language as an audiology student not knowing that I would need it to survive later when I became a late-deafened adult. If you know it, let’s use it! If you want to learn it, let me know and I’ll point you in the right direction.  This is my preferred method of communicating in loud environments.

What does it sound like for me in noise?

I really like the sound simulations (and accompanying visual representation) on this site.   If you listen to “Restaurant” –> “Mild” or “Moderate”, then  you can get a sense of what it’s like.  It’s hard work hearing and listening!

More visual representations!

I really, really love these Deaf Awareness posters from Action Deafness.   So much so that I purchased a few sets of them (since they had to be shipped from the UK anyway) and had them framed in the hard-to-find A3 frame size.   So simple, yet so profound in the way they represent what living with hearing loss is like!

ActionDeafness Posters

Sometimes I act like I heard you when I didn’t, really.

My good friend, Karen Putz, talks about social bluffing especially as it pertains to children (she has three deaf/hard of hearing kids).  It can definitely apply to adults, too…

I might pretend like I heard you because I don’t want you to know that I’m deaf (though THAT cover is blown now that you’re reading this blog post). When I meet someone for the first time or I think that I’m only going to have casual conversations with them, I don’t introduce myself as, “Hi! I’m Tina Childress…and-I’m-deaf-and-I-have-cochlear-implants-that-help-me-hear-so-please-face-me-when-you-talk.” TMI. The facts that my speech is largely unaffected and you can’t see my cochlear implants (because I’ve had essentially the same haircut since I was 12) help me “pass” as a normal hearing person. Most people never even know that I’m deaf.  Someone once compared it to having “hearing privilege”.  So true.

I think this strategy has a few purposes:

1) I don’t want you to judge me and my intellect based on my deafness but rather my accomplishments.  Unfortunately, there are too many negative stereotypes of people who are deaf as being “less than”.

2) I don’t want to have to go into my personal story.

3) I don’t want to feel pity (people get a “look” that I immediately recognize as this) nor do I want to be seen as inspiration porn.

4) Asking for you and others to repeat gets tiresome (for both you and me)

I would rather be known as “Maddy and Mia’s mommy” or “Matt’s wife” or “_______’s friend” or “that educational audiologist” as opposed to being “Deaf Tina” but I know that this is unrealistic because that is who I am, too….but it doesn’t define me other than my communication needs but it has shaped me in terms of my experiences.

So, yeah, sometimes I’ll nod my head in agreement, smile or laugh (just a half second later than when everyone else is smiling or laughing) so I don’t get called out for my bluffing because unless I am purposefully included, it is what it is. I don’t expect special treatment all the time, especially if I don’t disclose, but I do find myself gravitating towards friends who do this automatically and don’t have to be reminded.

Oh, and sometimes, I act like I heard you when I actually misheard what you said because, well, #Ihavehearingloss. 🙂

“Never mind” and “I’ll tell you later” are phrases that hurt.

“Never mind” implies that even though something was said, you are making the judgment for me that you don’t think it is something I would want to know.

“Later” is too late usually.  The moment is gone.

How well do I hear with my cochlear implants anyway?

So much better than I did with my hearing aids but I’m not cured – they are tools to help me hear. Noise is hard. Music is hard. I can do it but I just have to work at it.

What I hear sounds “normal” just sometimes it seems muffled or soft or distorted. My mom sounds like my mom.   If I’ve known you a long time, I hear in my head what I remember you sounding like.  It didn’t start out that way automatically…it was also like learning a new language, like I learned ASL.  I had to work hard to train my brain to make sense out of the very new sounds.

Can I talk on the phone?

Yassssss!  For short to medium length conversations, if it’s quiet on my end and quiet on your end and we have a good, strong signal, I do pretty well.  Throw in some adverse listening conditions, poor phone connection or multiple people talking at a time and it becomes exponentially harder.  It’s not my favorite way of communicating because I’m always afraid I’m going to miss or misunderstand something (also known as “phone anxiety”, a common feeling amongst people with hearing loss) so I’m glad that so much of the world has transitioned to text based communication (e.g., text, email).

Why do I use sign language so much when I have excellent speech and can hear well?

…because I can!  I feel very fortunate that I learned ASL, kept up with my skills, embraced the Deaf community, can sign with my hubby and kids and became fluent. I know learning a new language does not happen easily for others.

Using ASL really depends on the situation and who I’m with.   When I’m with my hearing families (e.g., my parents) who don’t sign, obviously I won’t sign with them.   When I’m with my hubby and kids, we sign because we all can sign and we all recognize the benefit of signing in noisy places, at a distance, when we don’t want someone else to understand what we’re saying…

I also use sign language interpreters in situations where there are groups of people that I want/need to hear and events like conferences.   Listening in noise and listening to speech amplified through speakers is difficult.  If I sit close, lipread, maybe even use assistive technology, I can probably get 85-90% of what was said.

That’s not good enough for me.  I want to get it all and I want to know who is talking and I want the information almost simultaneous with the speech and I want to be able to interact with my communication facilitator (i.e., interpreter).

I have also used CART (Communication Access Realtime Translation), also known as captioning, for events and appreciate the access it affords me, too.  It’s really a matter or preference depending on the situation and what’s available sometimes.

The devices that help me to hear

AB HarmonyThese things <pointing at my cochlear implant processors> stick to my head with magnets. Yes, I take them off when I sleep or shower or don’t want to hear babies crying on an airplane or my kids arguing.   There’s an inside part that was surgically implanted and an external part which is what you see.

Please don’t call them “cochlear transplants”.  😳   Though I have to admit that my daughter used to call them “cochlear eggplants”.🍆

If you have a question, please ask.

I am happy to share my feelings, my experiences and my knowledge. It’s not macabre to ask. I am sure there are always questions. I would rather we talk about it (even if it’s strained) rather than make assumptions about each other. I’m pretty much an open book. LOL

Yes, I sometimes feel sorry for myself and get frustrated..

…usually when it deals with my family. Like if I didn’t understand something they said the first time which escalates into mayhem when it didn’t need to. Or I can’t understand their teacher. Or I know I’m not fully appreciating what they’re doing musically (though this gets better each time I hear them).  Sometimes this frustration also extends into social situations and work situations.

…sometimes I wonder how different my life would be if I hadn’t lost my hearing.

This is something that is COMPLETELY normal when looking at the Stages of Grieving Hearing Loss and just because you feel like you got through one stage, it doesn’t mean that it won’t come back and bite you again. (FYI – the stages are denial, anger, bargaining, depression and acceptance.)

Deaf o’clock is my favorite time of the day sometimes!

This is when I take off my cochlear implants and the result is SILENCE.  Like pressing the mute button.   Silence to think, to ponder, to wonder, to process…and to give my brain a listening break.   We ALL need these during the day, especially if it’s stressful.

It’s not all bad. I can also have the best of both worlds!

Being deaf has given me a whole new appreciation, empathy and understanding of what it is like to work with the children and adults that I do in my role as an audiologist.

I LOVE the fact that I can go back and forth between the Deaf world and the Hearing world because I can speak and because I can sign.  The addition of Deaf culture adds beliefs and ideals to hold onto, to cherish, to share…and for that, I am grateful.

So, if you see me using a sign language interpreter one minute and then later see me talking on the phone, now you know why.

You like music?!? But you’re DEAF!

(DISCLAIMER:  The views below are mine and are not intended to represent how ALL people who are deaf and hard of hearing enjoy music)

An acquaintance recently asked me how I was able to enjoy myself doing things like going to all the musicals that I do, hearing my kids sing or play instruments.  I told him that while I might approach how I experience music in a different way than him, it didn’t mean that I couldn’t also enjoy it.

I grew up very musical…I started piano at age 4 (and continued with lessons through high school), eventually added cello, clarinet, the bassoon (ok – only for 3 months) in elementary school and then percussion by the time I was in high school.   I got to play in various bands and orchestras, sing in choirs and support musicals by playing in the pit.   When it came time to apply to college, I was accepted at one school for Engineering and one for Music.  I chose the former.

In college, I joined chorus where I sang alto and sometimes was piano accompaniment and even met my then-boyfriend-now-husband-who-sang-bass in that chorus.  We went to concerts, saw shows and listened to bands.  I ended up switching my major from Engineering to Audiology because I wanted to use my tech savviness to help deaf/hard of hearing people enjoy music.  As part of my coursework in Audiology, I also was required to take a sign language class (which I eventually taught as a grad student). So many ironies, huh?

At age 29, I started losing my hearing due to Autoimmune Inner Ear Disease.   Over the course of the next 9 months, I became completely deaf.   I used powerful hearing aids for about a year and when those weren’t enough, I got my first cochlear implant and five years later, my second cochlear implant.   My CIs have given me back so much of what I was missing including being able to hear soft sounds and understand most speech without lipreading – in ideal listening situations.

Listening in noise is difficult for people with hearing loss in general and while I often appear to be quite successful, I have to work really, really, really hard in those situations.

Another area that is challenging is enjoying music…I can hear music, I can listen to music but enjoying it is NOT automatic.  (NOTE: people with normal hearing don’t always enjoy music that is presented to them either.)

 

What does music sound like to me?

Music is so much more than melodies, harmonies, rhythms, timbres and dynamics.  Music is something to be experienced not only by the ears and the brain but also by the eyes, the heart and the soul.  Enjoying music is time spent alone with your thoughts and memories or time spent together with friends and family.

Enjoying music

My children have been involved with musical theater, choir, band and lately, we have enjoyed listening to live music at outdoor and indoor venues.  With my cochlear-implant-aided hearing, do I hear everything like I used to?  No.  Am I still able to enjoy myself?  Absolutely.

Because everyone has different levels of auditory memory and experiences, what I hear can be very different compared to what someone else hears.  I was hearing for most of my life and had a very musical background.   My ability to hear and process music would be very different than someone, for example, who was born deaf and received a CI as an adult (NOTE: anyone has the potential to enjoy music…we just might enjoy it in different ways).

Here’s a decent sound simulation of what it’s like for me to go hear a rock band:

Normal hearing – https://www.hear-it.org/sites/default/files/sound_files/NORMAL.mp3

*What I feel like I hear with my CIs* – https://www.hear-it.org/sites/default/files/sound_files/Sensorineural_Mild.mp3

In the above example, I tried to demonstrate how I can hear an awful lot but there are parts that are missing or distorted.   Add lots of instruments, really loud levels that cause my CIs to go into compression (which distorts sounds even more) and it will sound even worse.

As with many people with CIs, being able to discern melodies is the most difficult.   My favorite analogy to use is that while people with normal hearing might be able to hear all 88 keys on a keyboard as someone plays it wearing gloves, what I hear is more akin to someone playing all 88 keys while wearing mittens…I can definitely tell low notes vs. high notes but if the notes are close together or there is a chord, it might sound all jumbled together or one discordant pitch.

piano keyboard

Below is a visual representation of what I feel like I hear:

Music with my CI

(If the GIF above does not play automatically, go to https://imgflip.com/gif/2h2rxa)

What it represents is what I feel like I am experiencing as I walk into a music venue.   At first, nothing makes sense and sounds like noise and I might have no idea what’s playing.   As my ears and brain start to warm up and my other senses kick in, things might become more clear.   Most of the time, I’m so totally almost there but not quite.  Every once in a while though, my ears/brain will catch on and I will be able to identify a song or hear brilliant and clear notes and harmonies.

 

Tips for Multi-modal Music Enjoyment

Rather than lament the fact that I do not hear music the way I used to, I embrace practices that allow me to enjoy music the way I hear it NOW.

AUDITORY CONSIDERATIONS:

  • Talk to your audiologist about getting a “music program”. There are settings that can be adjusted to allow you to access more of the information you need to hear music.   If there’s a piece of music that’s especially frustrating for you or you have a favorite piece of music, try bringing a recording to your appointment so you can hear how changes to your program affect how you process it.
  • If a venue is especially reverberant or you’re sitting in the back and the sound is distorted by the time it reaches your amplification, consider using hearing assistive technology (a/k/a assistive listening devices). Some venues have designated areas that have a hearing loop and others have personal systems.  By using either of these methods, anything that has a mic (i.e., voices or instruments) will directly be transmitted to your amplification, bypassing any echo or reverberation effect.
  • Use other hearing assistive technology such as good quality supra-aural headphones, amplified neckloops or streamers to send music directly from your sound source to your amplification. This method can also help to block out competing background noise.
  • If you feel like you’re having an especially difficult time even hearing the beat, consider holding an inflated balloon in between your hands and next to your chest so you can “feel” the beat.
  • If you have residual hearing, you want to protect it. This gets tricky because you might need louder volumes to hear better. In certain cases though, too much volume will cause you to lose more hearing.   Hearing aids and cochlear implants are set so there is a ceiling to how loud something will go but in dangerously loud environments, if you’re not using hearing protection, loudness levels can surpass these ceilings and cause more damage the louder and longer that you listen to it.  If your ears are ringing or sounds are muffled after you leave a loud venue, chances are that you have affected your hearing –this can be temporary but with prolonged exposure, it can become permanent.   There are also apps that can estimate how loud an environment is and even having warnings when you’re someplace that’s too loud.  Go to the tab for Sound Level Meters on “Apps for Kids (and Adults) with Hearing Loss” page (http://bit.ly/Apps4HL-iOS and http://bit.ly/Apps4HL-Android) for some suggestions.

 

VISUAL CONSIDERATIONS:

  • As a musician, I benefit from being able to read sheet music to follow along. If my daughter is in a musical, I often ask to see the score so I know what it’s supposed to sound like.
  • If possible, try and sit close to the music source. I do better when I am able to lipread actors and singers and see their facial expressions.  For live music, I can better tell where the melody is going when I can see things like their fingers moving up and down a keyboard or guitar or see how the bows of stringed instruments move up and down.
  • Find lyrics online so you don’t have to work so hard on understanding the words and can focus more on melodies and harmonies.
  • Use apps on your mobile device like SoundHound, Shazam and MusixMatch to identify artists, songs, albums and lyrics – this works best with recorded music but can sometimes work in live venues.
  • If watching something with a lot of dialogue or lyrics, go to or request accommodations such as open or closed captioning, or sign language interpreter(s). (ASIDE: As a signer, I appreciate going with others that sign because not only do we have ease of communication in noisy places or at a distance but we often have fun signing along with the music!)

 

LISTEN WITH YOUR BRAIN AND YOUR HEART:

  • Start with familiar music first. This is already part of your auditory memory – you don’t have to hear every note to recognize this music.
    • Did you know that there’s a term for why you love music from the era when you were age 12-22 (i.e., middle school, high school and college)? It’s called “neural nostalgia” and it happens because during that timeframe, your brain is already rapidly developing so what you hear and the emotions that you feel are imprinted in different parts of your cortex.
  • When you’re ready to listen to unfamiliar music, try music with strong vocals or primary instruments, and not too many instruments playing at the same time.

 

Most importantly, don’t be too hard on yourself.  Just like learning a new language, hearing music in a different way takes time.   With patience and practice, listening to and/or playing music can be enjoyable again.

 

 

RESOURCES:

Article about Neural Nostalgia

http://www.slate.com/articles/health_and_science/science/2014/08/musical_nostalgia_the_psychology_and_neuroscience_for_song_preference_and.html

Association of Adult Musicians with Hearing Loss

http://aamhl.org

https://www.facebook.com/aamhl/

Musicians’ Clinics of Canada

http://www.musiciansclinics.com/

Noisy Planet

https://www.noisyplanet.nidcd.nih.gov/kids-preteens/listen-up-infographic

Sound simulations

https://www.hear-it.org/Impressions-of-hearing-loss-and-Tinnitus-

 

Squirrel Girl goes home

18 years ago (18 years and 3 days ago, to be exact), I had the pleasure of being a bridesmaid in my college friend’s wedding.   Here is a recap of that fateful day that turned this mild-mannered audiologist into the Sciuridae (i.e., yard rodent/squirrel)-phobic person she now is…

I had my first cochlear implant surgery on August 11, 2000 to help me hear better.  This involved drilling through my skull to access my cochlea in my inner ear.  It’s a relatively simple outpatient procedure resulting in a 3-4 inch incision behind my ear.  After the internal device was inserted, the surgeon sewed me back up with dissolving sutures and superglue on the incision to help it heal quickly.  He then wrapped my head in a pressure bandage which I had to wear for a couple of days before I could take it off and take the most glorious shower in my life.

Fast forward after a week of rest to the wedding in Hillsboro, IL.   I was helping out the bride by walking her dog and noticed that there were lots of squirrels in the neighborhood.  I’m walking under the tree and all of a sudden something hits me in the head.  I look down and it’s a NUT!  I had visions of really angry squirrels throwing nuts to ward off the invading humans.

Related image

(Photo cred: https://drawception.com/game/5kQ5nmcar6/squirrel-throwing-acorns-at-people/)

I didn’t think anything of it until I felt something wet behind my ear.  That stupid nut had hit me directly on my recent incision!  It had busted it open and now I was bleeding.  Poor father-of-the-bride took time out of the rehearsal day to take me to the local community hospital to hold my hand while the doctors tried stop the bleeding.  Because it was a head wound that was bleeding a lot and because I couldn’t have cautery (because of my recent cochlear implant surgery), it took several trips.   Eventually, it stopped bleeding and I was able to finish out the weekend’s festivities.

The following Monday, I had a follow-up with my surgeon who took one look at my incision-turned-huge-scab and told me that he would have open up the scab, clean up the accumulated blood and I had to put the pressure bandage back on.  😦   I told him the story and “Squirrel Girl” was born.    I had been sending out email updates to friends (this was back in 2000 before blogs and really, the Internet were up and going) and thereafter, I would receive various squirrel paraphernalia that was anonymously left on my desk.

Image result for warning squirrel

Image result for squirrel stuffed animal

On August 23, 2018, I had the pleasure of returning to that fateful town to do a presentation about (can you imagine?!?!) cochlear implants!  As I was waiting for the teachers to arrive, I looked down and this is what I saw:

What?!?  I looked around the room and saw more:

I told the teacher my squirrel story and she told me that they were still as vicious as ever.  Apparently, these squirrel were prone to eating through cables and wires in people’s cars!  (Did you know that some cables are coated with a product that contains soy?!?) She told me that squirrels had eaten through her brake line and something on her passenger side door.  And it didn’t just happen to her, it happened to another teacher, too!  Whoa.

After my presentation, I decided to do a nostalgic driving tour to visit the places of my demise.   The original house of my friend’s parents had long ago been sold and the new owners built a new structure.  I still vaguely remember those trees though!

The small community hospital had expanded and was now more of a hospital complex.

I joke that I have a cochlear implant on one side that is legally an adult (nee 2000) and a second one that is a teenager (nee 2005).   They have given me years of much, much improved hearing that I was not able to get with my hearing aids.   When I had my second surgery, people joked that I might want to wear a protective helmet.   Right?!?