There are many things that keep me up at night when I let my mind wander to the fast approaching reality of my world being plunged into silence – and losing the ability to hear and experience music is at the top of that list. 

Music is my lifeline. 

That is probably a surprising statement from someone with a severe hearing loss, but for me it is the force that keeps me grounded. I am always playing music in the car, at home, streaming to my hearing aids via Bluetooth while I am working on projects, out for a walk with Rocky, or zipping around the grocery store aisles. I dance freely and sing loudly (my enthusiasm makes up for my sheer lack of attention to staying on key) – and when I really get going, Rocky joins in the cacophony with a tune of his own, usually in the form of anxious barking and those big eyes pleading with me to please stop! 

My musical library looks like a thrift store as it holds tunes from every imaginable era and style. I paused while writing this passage and hit “shuffle” to see what comes up – here are the 7 songs that played during this interlude: 

1. “Over the Rainbow” – Ray Charles 
2. “Just a Girl” – No Doubt 
3. “Bird on a Wire” – Leonard Cohen 
4. “I’ve Got You Under My Skin” – Frank Sinatra 
5. “Call Me the Breeze” – Lynyrd Skynyrd 
6. “Hallelujah” – Il Divo 
7. “Carousel Man” – Cher 

I grew up listening to a wide variety of music from traditional standards to country classics (Dad’s Willie Nelson phase was a memorable one…) with the likes of Carly Simon, James Taylor, The Beatles, Bread, Duran Duran, Billy Joel, Jim Croce, and Manhattan Transfer mixed into the rotation to name a few. 

I have many memories of my Mom plopping me on the living room couch, affixing headphones to my head, and handing me an opera libretto or sheet music for classic musicals. She would then drop a record onto the turntable with a flourish, and I would be flooded in sound. The librettos and sheet music sets allowed me to follow along with the music and become enveloped in a sweeping, lyrical story. These are core memories for me that shaped my musical tastes, offered some cultural education, and allowed me to lose myself and leave the stressors of my hearing loss behind for a blissful hour or two. 

Through it all, there has been one constant – my beloved Frank Sinatra. Frank’s silky smooth voice, raw emotion, and sheer coolness grabbed my attention when I was young, and has been my constant companion throughout my life. Frank has not only given me the gift of his talents, but I blame him for my affinity for smooth talking, blue eyed men (though none that I have encountered have had even an ounce of Frank’s effortless coolness, although one in particular thinks he does…I’ll leave it to the readers who know me well to figure out who that might be…). Throughout my life, there has not been a single situation, mood, or moment that was not instantly improved by throwing some Sinatra on to enhance my personal soundtrack. 

In honor of the one and only Francis Albert Sinatra, I present to you a rerelease of a blog I wrote a few years back using titles of songs that Ol’ Blue Eyes himself recorded: 

“No One Ever Tells You” that with a disability you may live “Moment to Moment” and long for “The Good Times”. “Night After Night” I lie awake with my “Head on My Pillow” and accept that while “I Gotta Right to Sing the Blues” more often than not “I Whistle a Happy Tune” because my Grandma taught me when I was very young that “When You’re Smiling” the whole world smiles with you. 

“It Never Entered My Mind” that I may be “All Alone” for “As Long As I Live” without my one true love.  It hit me hard “Yesterday” that “This Is the Beginning of the End” and that I may have “A Hundred Years From Now” or only “Five Minutes More” to spend time in his company.  He is my strength “Come Rain or Come Shine” and has been by my side “Every Day of My Life”. “Time After Time” being with “This Love of Mine” is “A Lovely Way to Spend an Evening” “Come Rain or Come Shine”.  “He’s My Guy” and life will be “Half as Lovely” without him.  “I’ll Never Be the Same” if we suddenly face “The Last Dance”

It would be “Nice ‘n’ Easy” to sit around and lament the passing of “The Days of Wine and Roses” and yearn “For the Good Times”. “I Could Write a Book” as I sit “Among My Souvenirs” and “Forget to Remember” that “It Was a Very Good Year”.  And then I think to myself, “Should I?”  “I’ll Never Be The Same” if I start “Learnin’ the Blues” and get lost in a “Melancholy Mood”. 

I refuse to be that “Old School Teacher”, sitting around in “The House I Live In” wrapped up in “My Shawl” looking “Out Beyond the Window” at a “Pale Moon” letting life “Pass Me By”. Instead, I try to “Ac-cent-tchu-ate the Positive” and “Dig Down Deep” “Every Day of My Life” and remind myself that “The Best is Yet to Come”.  “I Sing The Songs” and high kick my way into that “Same Old Song and Dance” because “They Can’t Take That Away From Me”, “This Thing I Love” that is just “Too Marvelous for Words”.  

From “I’ve Got You Under my Skin” to “The Lady is a Tramp” – Frank Sinatra has always been and always will be the love of my life.  His music is forever in my soul and I will always have Frank close to me once my world drifts into silence.  In words delivered in that signature smooth tenor, “May you live to be 100 – and may the last voice you hear be mine.”

It will be, Frank – it will be.

Today is my 50th Birthday. 

I am just as adorable now as I was then, in my humble opinion. My wide, dimpled smile continues to get me both in and out of trouble and my sparkling brown eyes contain joy and the ever present hint of mischief. 

I could hear at birth and through my early years until everything began to fade when I was around 3 ½ years old. I got my first hearing aid when I was 4 years old, and as of this birthday, I also celebrate the milestone of having worn hearing aids for 46 years. 

I have been blessed beyond measure with an incredible husband, a large family and more friends that I can count, some of whom I hold dear as honorary family members.  I do not have children, but I believe that I was not meant to have them so I could be an “Aunty” to everyone’s children – which I consider to be the highest honor of my life. 

I enter my 50th year with excitement, nostalgia and a fair amount of curiosity which has always provided me with a few entertaining stories in the situations in which I have found myself, that are often unbelievable. I’ve been attacked by an alligator in a canoe, stormed the field at Alumni Stadium on crutches after a big BC football victory, and woke up in a tent in a field somewhere in Canada only to find out that Princess Di has passed away.  

Now, if you’ll excuse me, I am off to continue living a great story…

Happy Birthday to me, and love to all of you!

xo Julie

I am the only person with hearing loss and – by default – hearing aids, in my family, friend group, my educational experiences, extra curricular activities, volunteer opportunities, and occupation. I have been the only one, always. 

Oddly, I’ve been perfectly fine with it all of my life. I have never had a burning desire to join any support groups or seek out others with hearing loss for the purpose of fostering friendships, volunteer activities, or employment assistance.  I didn’t want it. I was just fine on my own, and I didn’t need to “lower myself” to find others of my ilk. 

I railed mightily against anything suggested to me that even related to any type of interaction or organization that even hinted at hearing loss as the common denominator. I took it as a personal affront, an insult, and fought back beak and claw at the prospect of even considering joining a group or attending a fundraiser or community event.

I am on the cusp of 50, a birthday milestone looming on the edge of the calendar – and I still feel as strongly as I did at the ages of 17, 28, 35 and 41 when an offer or suggestion or even an inkling of anything having to do with hearing loss communities fluttered in my orbit. 

Please leave me alone. 

I am perfectly fine, thanks. 

Not interested.

(That Haiku was a nod to Brad…you’ll learn about him in a few paragraphs) 

For the first time, I am putting into words the awful truth – the reason why I don’t want any association with others with hearing loss – and it is truly an awful thought, but it is borne of my own personal battles with dealing with this debilitating, chronic, deteriorating disability…the truth of the matter is…I’m a snob. 

I’m better than you. 

Sorry, not sorry. 

My sheer ego overrides even the mildest consideration of exploring opportunities to interact with others that wear hearing aids or experience hearing loss. My ego mixed with impatience, coupled with a mental toughness, and topped off with a deeply buried insecurity has resulted in a superiority complex that rears its head mightily when the mere mention of a hearing loss community is tossed in my direction. I know intellectually that this is all a protective measure, a hard shell that I have developed to keep people from getting too close to find the soft parts of me that are vulnerable – a shell grown from years of bullying through Elementary school, advocating for myself at every turn, and navigating a world that was not designed for me and continues to be limited in its accommodation and access.

I approach life with a determination, grit, and laser focus that would serve me well as a military commander or as the head of an underworld crime syndicate. I have always been like this, an evolution that has spanned childhood to the present – part conditioning, part survival instincts, and part of just what makes me the 5’ 4” tornado of energy, intimidation, and sheer nerve that is coming towards you whether you’re ready or not. 

The second my eyes flicker open in the morning and before my feet hit the floor, I am reminded of my hearing loss by the silence that greets me. I can rub the sleep from my eyes and stretch out my aching joints, but I cannot shake away the silence until I put my aids in for the day. 

I wake up every morning with a two-punch hit of grief and exhaustion. I’m still hearing impaired and it’s another day of my having to navigate the landmines of life with four as opposed to five senses. 

I’m already behind. 

I swing around and my feet make first contact with the hardwood floor, and that is when I surge forward and the power of my being comes alive. My sheer conviction explodes forward in the form of a mental pep talk that plays on automatic at this point in my life, and it goes something like this: “Goddamnit. GODDAMNIT. Get up – it’s showtime. TIME TO SHOW THEM WHO YOU ARE, WHAT YOU’RE ABOUT, AND THAT YOU CAN DO WHAT THEY CAN DO AND DO IT BETTER!” 

And then the day begins in earnest. 

I have lived at this level of high alert all of my life. I approach every facet of my day, every moment and every minute with a level of unmatched, consistent intensity. I default to digging in my heels, drawing focus, and then charging forward into any and everything in my way. I do not tolerate weakness in myself or lack of accomplishment, and rarely prioritize restorative rest. I also possess a zero tolerance policy for “self pity” and sitting around feeling sorry for myself. There is no room in my inner world for softness of character, emotional weakness, low motivation or paltry excuses. I hold myself to a very high and nearly impossible to achieve standard. 

As mentioned prior, I am the only person in my life with a hearing loss. Therefore, I have created the prototype for how I feel a person with a disability should function and in my incredibly limited experience, I am yet to find someone else that measures up to my very, very high standards – which, ironically, are standards I have set only for myself. 

I buck at seeking out others with similar disabilities because I perceive that desire for people to get together with like-minded individuals translates to a weakness of self. I abhor – and do not tolerate – weakness in myself. Why would I want to associate with a group of people that, in my mind, are clearly weaker minded and “giving in” to their disabilities? In no way does that fit into my narrative that I’ve created and have told myself daily since those hearing aids were placed into my ears as a young child. 

I’ve tried to lean into joining the community. 

My parents offered me the opportunity to transition to a Deaf program for High School. I considered it for about half a minute and stated my preference, in classic no-uncertain-terms fashion, to continue with my peers to the public High School. 

I attempted to tour Gallaudet University when it came time to look for colleges. I never made it out of the lobby. 

I took ASL classes in high school and again in college. I viewed it as a “pretty art form”, never appreciating it as fully as I should have as a complete and complex language. Now I’m staring it down as a tool that I’m eventually going to need, and maybe I should have been a little more studious. 

I was a member of the Students with Disabilities Advisory Committee at Boston College during my tenure there as a student – and even then, I felt like I was doing “them” a favor by participating because I was clearly more intelligent, articulate, popular and interesting than anyone else in that room. 

And then Brad showed up. 

Damnit. 

The very thing I’d avoided all my life was plopped in front of me – 

I now had a hard of hearing human in my orbit…

This was made worse by the fact that Brad is intelligent, well-read, educated, loves dogs, is passionate about hockey, has ink, is an excellent writer, and possesses a million other commonalities that neither of us can comprehend, never mind explain. 

Basically, he was the mirror image of me (height notwithstanding). 

If that wasn’t bad enough – I then found myself in the midst of a vast collaborative project that addresses the very thing I never wanted to be public about, my hearing loss. And public we are – with video clips, blog posts, social media content, email distribution lists and more in the works. 

And to add insult to injury? He’s become a treasured friend.

A talking parrot chewing on the leaves of a fern whilst riding a Boston Terrier would have been less of a shock. 

Brad is a leader and active member of the Boston chapter of the Hearing Loss Association of America (HLAA). He speaks so highly of the organization and his experiences as a member and engaged participant in their activities. 

I have joined the mailing list. I read the newsletter. 

I’m still not ready to move my feet forward to engage further with the HLAA but am hopeful to maybe try at some point soon, because maybe…just maybe…I could benefit from a community comprised of those that would understand completely, and without judgment, what I deal with on a daily basis – much like Brad does for me every day. 

We’ll see where I land.

But I’m still better than all of you…I am a BC Eagle, after all. 

If ever you see me looking up at you under heavily lidded eyes with my hand cradled against the left side of my temple, please know that you have earned The Look – which those of you that know me well can almost certainly picture from my above description. You are likely to receive The Look because you have said something with the best of intentions but completely devoid of any and all common sense – when it comes to my hearing loss. 

I have compiled a few of my absolute favorite summoners of The Look: 

Mom Found The Clear Masks

(Sorry, Mom, but had to bring this classic back from 2020)

My Mom was innocently scrolling Facebook at some inane hour of the morning desperate to fill the time between dusk and dawn during one of her sleepless nights.  She stumbled upon one of the first news articles describing the creation of “clear masks for the Deaf and Hard of Hearing”.  For those that were unfamiliar with this ingenious design, the panel that covers the mouth on a standard cloth or surgical mask were instead replaced with a clear panel which allowed the Deaf and Hard of Hearing to be able to lip read and view facial expressions to support understanding of spoken words – a complication that we were all up against with full coverage masks. Through the long night, my Mom retained this new factoid and was absolutely bubbling over to share this with me once the sun had risen to an acceptable height in the sky of a new day. 

The conversation is below: 

Mom: “JULIE! You’ll never GUESS what I saw on FACEBOOK!”

Me: (bracing myself for another video of a dog that talks) “What? What did you find this time?”

Mom: “CLEAR MASKS! I found CLEAR MASKS for the Deaf and Hard of Hearing!”

Me: (interest piqued, relieved that it’s not a talking dog) “No way! Tell me about them – “

Mom: (describes the masks in great detail, enthusiasm is evident) 

Me: “That is really a wonderful invention – wish I’d thought of it – but I wonder about the efficiency in protection -”

(I have now been caught off completely by my Mom as she is now bursting like a shaken bottle of champagne)

Mom: “YOU NEED ONE OF THESE!”

Me: “No, I really don’t….”

Mom: “YES! YOU NEED ONE! IT WILL HELP YOU!”

Me: “Mom…I don’t think you’re understanding this…”

Mom: “YOU NEED ONE – THEY’RE FOR THE DEAF AND HARD OF HEARING! IF YOU WEAR ONE IT WILL HELP YOU HEAR EVERYONE!”

Me: (Silence, measured breaths) “Mom…yes, I know they are for the Deaf and Hard of Hearing…but I’m not trying to read my own lips…My wearing one on MY face isn’t going to help…”

Mom: (long pause, like really long)  “OHHHHhhhh…”

The Sound Machine

I mentioned to a friend many years ago that I was having trouble quieting my brain at night and that even with reading before bed, I was having trouble slowing my racing thoughts.  I was met with this suggestion: “Have you thought about getting a sound machine? They are really soothing.”

For those that are not aware – my hearing aids come out of my ears at night. I do not sleep with them in. I cannot hear a thing with them out.

This was not a good suggestion.

Did You Hear That?

He is rarely mentioned, but it is time to bring Mark, my husband, into the limelight for this part of the post.  As we have aged, many things have slowly adjusted but one thing has remained constant – I still can’t hear. This fact, however, seems to continue to elude this saint of a man – because his favorite expression, usually uttered with urgency reserved for the ending of the world, “Did you HEAR that!?” – followed by a mad dash to locate the source of the offending sound. 

Nope. Didn’t hear it, Mark…not this time, not the last time, and certainly not the next time. 

A personal favorite was the purchase of the new(ish) washing machine. He came home and proudly declared that it is a quieter version so it will not be too loud. 

The end result? I have no idea when the wash is done.

Have You Thought About Being An Interpreter? 

And here we round out this list with one of my all-time favorite comments by a well intentioned coworker – who was gushing over my advocacy abilities for our most vulnerable students, and suggesting that I do more in the public arena for disability advocacy.  This poor soul suggested that I become an interpreter for the Deaf.

Let that sink in.

I will be sure to continue to update this list as we all continue on this journey of understanding together – because I am confident that The Look will make an appearance again in the very near future – 

A mutual side-eyed glance transitioned to us facing one another at nearly eye level for a change (due to me standing on a high bench) – both of us sodden, downtrodden, on sensory overload, and chilled to the bone. 

We had words. 

Julie: “Someday this will be funny…” (cautiously hopeful in tone while barely suppressing a complete meltdown)

Brad: “Someday…but today is not that day…” (even tempered, reasonable, encouraging and also barely suppressing a complete meltdown)

It was all my fault. 

As usual.

Our Misty Mountain Hop blog recounting was our first foray into the rain, and truly belongs in the collection housed at the “Things Julie Comes Up With and Things Brad Somehow Goes Along With Hall of Fame”. 

This latest experience out in the rain has earned the top spot. 

(As of this writing, I think we’re still speaking)

It started off – as most things do – with the absolute best of intentions. An invitation extended to attend a Boston College football game – the quintessential activity of a crisp New England afternoon. There were promises of beer, delicious food, gothic towers, fantastic company, and – of course – the excitement of watching BC trounce an opponent on the home field. All of the days leading up to game day were sunny, breezy, with a hint of the anticipated shift to “sweatshirt weather”. 

Naturally, in the days approaching game day, the skies had other plans – in the form of a torrential, unrelenting, deluge of rain. All day. All night. 

Did this deter your faithful writer of this blog? Of course not. 

Should it? Absolutely. 

Will she ever learn? Nope. 

For those that have been along on the blog journeys of “Hearing Things with Julie and Brad”- you may recall our rallying cry when it comes to water anywhere near our hearing aids: “WATER IS THE ENEMY!”.  

We were solidly in enemy territory. 

It started out with me working through the stages of grief as it relates to the weather – abject denial that it’s actually raining, transitioning to sadness that the sun is not coming out, followed up with irrational anger and raging at the sky and ending with acceptance that this has devolved into a living hell in the form of endless rain. 

Undeterred, we moved ahead and took in the sights of the always gorgeous Boston College campus no matter the weather, and landed at the Lane family tailgate site. We were relegated to wearing the hoods attached to our sweatshirt (Brad) and raincoat (Julie) to protect our “bionic ears”, to borrow a term from Brad – which, while absolutely necessary, were cumbersome, restricting and upsetting to our sensory systems. 

The hearing aid microphones are incredibly sensitive and the slightest bit of interference be it noises, dust or material coming close to the apparatus will set off screeching feedback at a pitch that I (unfortunately) can still hear. The wearing of a hood for extended periods – especially when you don’t have the option to remove it due to the very real possibility of damaging your hearing aids – is nearly intolerable in its feelings of claustrophobia. A hood minimizes my peripheral vision which adds another exhaustive level of already struggling to hear – I rely on my forward and peripheral vision to inform me of my environment. The removal of a skill set that is necessary to my overall functioning, safety and comfort level – especially in a crowded, public setting – added to an already increasing level of anxiety of how I was going to enjoy the tailgate and football game when I was put in an even more compromised situation than normal day-to-day life experiences. Add to this that I am 5’ 4” tall with a small head – which results in a gigantic hood that falls forward over my face, adding insult to injury. 

We continued on, determined to make the best of this situation (I plied Brad with Sam Adams Octoberfest to keep him sort-of on my side in this mess). 

Fortunately, there was a canopy set up at the tailgate site which gave us brief pauses from the rain and also allowed us to remove our hoods for a short period without fear of rain seeping into our “bionic ears”. The removal of the hood…to describe it to someone that has never experienced this whilst wearing hearing aids…is, simply put, euphoric. That first blast of cool air hitting the previously covered sides of your face, the world coming to life again in all of its cacophony of sounds – I finally felt like I could exhale. For a few brief moments, I was able to engage in conversation with friends and family and felt as close to “typical” as I ever will as a hearing aid user in the midst of an endless stream of rain. As the afternoon bore on, I started to take little risks with venturing out sans hood. As with most things in my life, I will push that envelope a little further each time – soon, I was trotting around for longer than I really should have with my hood off, reveling in the freedom I felt while rolling the figurative dice of my hearing aids sustaining significant and likely permanent damage. 

While I was frolicking in the rain, I had no idea that I was simultaneously giving Brad a small cardiac event each time he glimpsed my hood down. At one point, I went swirling by on my way to greet friends and was gently reminded to put my hood up. Ironically, I was spending a good portion of the afternoon in a mild panic about how Brad was going to stay dry during the game where there was no canopy and he was clad only in a sweatshirt that was somewhat water resistant without a raincoat. We reached a compromise – my hood stays up, he puts on a poncho with an extra hood just in case. 

Finally, reason ruled the day, and we retreated to the warm and dry confines of the truck while the game finished in our absence. The shelter provided the permanent removal of the hood for the evening – a return to the feeling of bliss, but the  side effect of having a hood on for an extended period, especially in a very loud environment like a football stadium, is that it creates a vibrating effect in my ears and my brain, which does not subside quickly.  For lack of a better descriptor, it feels like someone comes up behind me with cymbals, smashes them behind me, and the reverberations continue…and continue…and continue. Brad and I traded one relief of the burden of the hood for another burden of the ongoing reverberations and our brains feeling transformed to something akin to scrambled eggs. Our eyes were tired, our backs and feet weary, our senses were on high alert and we were the heady mix of being both hyper and exhausted at the same time. 

It was a lot. 

I am glad that we went to a BC football game, and that Brad got to see the love of my life (Boston College, obviously) in person. But next time? Even the faintest threat of rain will find us enjoying the game somewhere else, anywhere else, and definitely not outside! 

(And I know you’re wondering if I kept my hood on for the rest of the night and if Brad trusted me to keep up my end of the bargain – Well…Shortly after this picture was taken, the presence of two large hands behind me abruptly wrestling my sweatshirt hood and my rain coat hood on top of my head answers that question…) 

Back in 2019, I constantly encountered people in my age bracket who gleefully spewed out, “OH MY GOD! DID YOU HEAR THE NEWS!? NETFLIX IS RELEASING THE DARK CRYSTAL: THE SERIES!”  That very loud, animated, and overly excited share was met with silence from me…and The Look.  (Those of you that know me very well know exactly The Look I am talking about – that mix of disgust, disdain and judgment that I cannot hide, no matter how hard I try…That Look.) The Dark Crystal Crazies could not even begin to understand why I did not join in their confetti throwing and ribbon dancing – well, let me explain with a barely even, measured tone: I. Hate. The. Dark. Crystal. 

I have two of the most amazing, loving and adventurous parents ever – and they were constantly dreaming up new ways to keep us kids entertained while simultaneously providing different types of life experiences.  I am not clear as to how old I was, but I am guessing that I was somewhere around 7 years old.  My well-meaning parents decided one summer night while we were vacationing on Cape Cod to take us to the drive-in theater!  A totally awesome and novel throw-back to time gone by that was almost seductive in its smells of popcorn, cotton candy and car exhaust. All felt right with the world for an instant as I sat in the big blue van waiting for the movie to start…such glorious anticipation of seeing a story come to life on that giant white screen…and then The Muppets came.  

Those goddamn Muppets.  The speakers were crackly and old which was bad enough…but for a kid that requires support from lip reading to completely understand conversation and follow a storyline…THE GODDAMN MUPPETS DON’T HAVE LIPS! Ever try and lip-read puppets? It’s not pretty.  The addition of captions or assisted listening devices didn’t exist way back in the mid-80s.  Sadly, the options that are offered in today’s theaters are equally unreliable and inefficient, but that is another blog post (or book) on its own.  I was left with no options to enjoy this movie as my frustration level began to rise. I retreated to the back of the van with a book and a flashlight, feeling dejected and excluded, with hot tears pricking at the corner of my eyes.  It was a sad and blatant reminder of my ever present “otherness” – regardless of how much I pretended I was “just like everyone else except for my hearing aids”, it was far from the truth.  

The inclusion of captioning has now become more commonplace on television, Netflix, On-demand movies, YouTube videos…the options have increased, though it is not a perfect system.  

I was watching the news one day, and the reporter said, “The Dow dropped twelve points today”.  The caption that supported this on the bottom of the screen read, “The Dowser drot to elves too hayd.”  You can’t make this up.  Put on live television and select the caption option to see for yourself the absurdity that is being passed off as an acceptable accommodation. I am fortunate enough that I can hear enough of the words that the reporters or whomever is speaking is saying, which supports my ability to put together a clearer picture of what is happening, but my hearing is declining at a rapid rate and this luxury will not be available to me for much longer. 

The non-live options for television shows, movies and the like are also not super helpful to those of us that really cannot hear all that well, either.  For example, I was watching a television show and there were no words being spoken during a particular scene, but there was background music. The ever helpful caption stated, “light jazz melody”.  Thank you for the effort, but it would be better off to flash the message: “NOTHING IS HAPPENING NOW. GOOD TIME TO GO TO THE BATHROOM.”  I appreciate the attempt to offer some sense of a “playing peaceful melody” or “crashing of ocean waves”…but it is really not helpful if we have never heard those sounds.

And so I soldier on, hoping for continued awareness and improvement in assistive technology for the hearing impaired.  

And – for the record – I’m not watching “The Dark Crystal”, even with captions! 

As always, Brad had a few things to share about his experiences with the world of captions! Check it out here – https://wordpress.com/post/bradmckenna.wordpress.com/6629

Grandma had a direct line to the divine and was on a first name basis with every saint, angel, and the Holy Family themselves at all times of the day or night.  She was devoted but not pious or a “holier than thou” type because she possessed a passion for laughter and a sense of adventure not unsimilar to my own. Grandma’s reverence was evident during worship and prayer, as well as in her daily routines – particularly at 3:00 p.m. when “General Hospital” came on the television set.  I learned quickly as a child that unless the riveting storyline of Anna and Scorpio was rudely interrupted by a news report detailing the end of the world, I was on my own until the end of “her story”. Grandma was not to be deterred from prayer or “General Hospital” – both were sins in the eyes of those above.

Grandma was also a woman with ideas. Grandma had IDEAS with a CAPITAL “I”.  And when Grandma came across some trouble, she had a solution – because she had some IDEAS – and your best defense was to fall in line with her and go along for the ride, wherever it was going to take you.  And in the case of my hearing loss? Well – we were going to visit some healers.

I was very young – likely around 4 or 5 years old – Grandma drew upon her famous IDEAS and felt that placing me in situations where I was surrounded by prayer and faithful persons would help improve my situation. 

 (Now – before I continue, I want to point out that I am a person of strong faith and I do believe in the power of prayer – this story is what I remember vividly as a child and is not meant to be taken as a satire or sarcastic commentary on religion.)

Grandma swept me up, Grandchild #7, in a whirlwind of a ride that involved a lot of incense, old people, and handling of my ears.

It all started with Mass in the house.  The wine – I can still taste the bread soaked in that sour wine resting on my tongue all these years later.  That dark berry color that stains everything it touches remains vivid in my mind. I know in this recollection that we are at my Grandma’s house and in her dining room.  There are adults standing around me, and I am a little unsure of why everyone is paying attention to me when suddenly I feel my ears being cupped by very large and very warm hands.  No one offered any explanation about what this was and why it was happening…so I stood there, compliant as always and waited for an explanation that never came.

And such was my first healing experience – for Grandma had called upon the divine above to intercede.  And here I stood with stale bread that tastes vile and sour with a man’s hands cupping my ears. There was a reverence in the air, a hush of sorts – and I remember looking around thinking, “And…now what?”

Well. Guess what? Still Deaf after that little episode.

Grandma was not to be defeated because remember – she had IDEAS – and she demanded a return on her investment of her faith – so before I knew it, I was again off on another adventure with Grandma leading the charge and The Aunties bringing up the rear.

This time I was in a massive church with a domed roof – I remember looking up and thinking that I was actually inside a jelly roll dessert. I don’t remember if there was a service that day, but there was something else going on inside that building that was beyond the scope of what I could comprehend at my young age.  There was a lot of crying, wailing and shaking going on with the people that were at the front of the church.  

Once again, I had no explanation as to what was going to happen to me and I watched as everyone that went to the front began to cry, wail, shake and who knows what else.  I remember walking out of the pew and starting the march down the center aisle of the church. My Aunt Toots was in front leading the charge, Grandma next to me in the middle, and Aunt Toni the closing rank of this brigade.  The next thing I know, I am in front of a guy in a dress – which I realize sometime later was actually a priest – and now HIS hands are cupped again over my ears. His hands were not warm like the first Padre, but once again there were hands over my ears.  I stood there, compliantly, and..still can’t hear anything. There was no shaking or wailing from me that day at the front of the church – just standing their patiently waiting for the next bit of action to come on my adventure with Grandma and The Aunties.

I am confident that there were more attempts and visits to healers because Grandma was undeterred in her efforts, but these were the two that stood out to me in my memory that I could confidently bring to life on these pages.  

I had an epiphany of sorts back in 2016 after a particularly horrible hearing test when I learned that my hearing had plummeted significantly. I realized, with such clarity, that Grandma’s magnificent efforts and prayers actually worked, though not in the way that was immediately obvious.  My hearing loss is degenerative, but I have been blessed beyond measure to this point to have had so many years with such a great quality of life and access to the most up-to-date technologies to help sustain my connection to the world before it becomes permanently silent. That is the power of prayers at work, and I am forever grateful to Grandma for her sincere, determined and loving persistence – however off-beat at times – to ensure that I had every chance to be blessed.  I guess this was one of her famous ideas that worked out alright in the end.

In loving memory of my Grandma, Angelina Nigro DeMatteo

While I wish that Brad had known my Grandma, as I think they would have gotten along like a house on fire, he did dive into this topic with me this week a bit – his focuses on Intention – have a read here: https://bradmckenna.wordpress.com/?p=6604

This week we celebrate our 2 month anniversary of Hearing Things with Julie and Brad!

Read on for each of our takes on how things are going!

Julie’s Take

How Has It ONLY Been 2 Months?! 

When the clock clicked over from 6:59 p.m. to 7:00 p.m. on Wednesday, July 10th, 2024, a Zoom link opened and an exchange of ideas began between an extroverted teacher and an introverted librarian…the world’s most unlikely pairing, as you will be hard pressed to find two people who are complete opposites in just about every way imaginable, except for one fundamental similarity – the daily struggle of living with a hearing loss in a hearing world. 

It was during this first meeting that “Hearing Things With Julie and Brad” was officially launched into the stratosphere – in short, in honor of one of Julie’s favorite movies, “A Star was Born!” (All the versions, with special fondness for the Judy Garland rendition). 

I can’t remember a single thing about this first planning meeting – as pivotal as it would prove to be as it moved the needle forward for our development of a video series, blog posts, and creative content – I have no clue what we talked about, how we came up with any ideas, or what next steps we agreed to take. (I’m happy to report that since then, we keep notes of every meeting…). 

We made fast work of it all – considering that we had our first meaningful conversation just 6 days prior at a 4th of July BBQ. 

In the time since, we have gotten to know one another and amid a flurry of discovered commonalities and inexplicable coincidences we have learned one another’s workstyles – which, not surprisingly, are in complete opposition! 

A sampling of how we work: 

DAILY SCHEDULE 

Brad is a morning person, while Julie prefers to work late into the night – this results in Brad seeing emails when he wakes up in the morning and while Julie is stumbling to wake up and greet the day, Brad is firing back responses via text or emails leaving her to wonder how any sane person can have a coherent thought at 6:15 a.m.

IDEA GENERATION 

Julie’s brain works at the speed of a hovering hummingbird – and, similar to the hummingbird, doesn’t remain in place for very long because something else has drawn away her attention span resulting in quickly typed phrases that may or may not make sense and hastily scribbled notes in the now infamous Star Wars Notebook that must never be misplaced. Brad accepts the chaos and has admitted that he knows that if he waits a little longer, Julie will change her mind again or come up with some other insane or harebrained scheme that he will have to navigate. 

Brad’s approach resembles the famous “The Thinker” sculpture. He has the enviable ability to remain still with a quiet mind which allows for deep thoughts and analysis of an idea that he will turn over in his mind studying all angles, possibilities, probabilities, and theories. Then, when he has reached a satisfactory conclusion, will conjure up a book that he read about the topic or conduct in-depth research which then brings the whole process together.  Julie accepts the deliberate and thoughtful pace at which Brad works, and has learned that eventually she will get an answer to the near-daily question she poses with bubbling enthusiasm: “WELL!?!? What do you THINK!?”

WRITING PROCESS 

They both have to write most things down to process them before transferring them to typed up meeting notes and spreadsheets – especially when formulating ideas for blogs and episodes. 

Julie attacks the pages of her notebook with a variety of colored pens (the “good pens”, as she calls them – Pilot G-2 07), writing widely, loopily, and off of the lines of the paper. 

Brad prefers a simple black pen and will scratch out ideas a few lines at a time, neatly, on the lines, pausing between thoughts to contemplate and then return to the page. 

Julie writes and scribbles and doodles in the margins and comes up for air once she has exhausted all of it from her hurried mind.

Brad will return to the notebook several times over the coming days as his brain still works out ideas and thoughts – Julie is already on to the next 10 things that have come into her head. 

WORK ENVIRONMENT

Julie thrives on noise and music while she works, often texting, dancing, and chatting away while she goes along. 

Brad requires peace and quiet, often on his porch during pleasant weather. 

Needless to say, they do not write their blogs in a shared space. 

(and back to the first person narrative…) 

There is a story of a conversation we had a few weeks ago that makes me laugh when I think of it, that I think perfectly captures our personalities – 

I posed the question to Brad, “Where do you want Hearing Things to ultimately end up? What’s the end goal in your mind?” 

In typical reasonable, thoughtful, and compassionate Brad fashion – he said that he would like the conversation around hearing loss to continue without us having to be a part of it all 

the time. That our resource would be out there to educate others and hopefully be used as a reference. 

My response to the same question: “I want us to be on the Today show!” 

These past two months have flown by and have resulted in production of multiple recorded episodes, a list of 100+ potential topics, dual perspective blog posts, countless book recommendations, heated debates over pop culture phenomenon (Empire vs. Jedi, for example), and a complete nonsense shorthand that makes zero sense to anyone else but us (Boston Fern Time?). 

As we’ve said before, and we will say it over and over again – it shouldn’t work, but it does. 

And it works really, really well – 

Cheers to two months of an unexpected collaboration – and a big thank you to ALL of you for supporting acceptance, advocacy and education each time you view a video, read my blog, and share our work with others!  We appreciate you! 

Brad’s Take

Arguments.

Arguments with Julie are what I like best. 

Arguments with Julie are what I like best though I am afraid of conflict. 

I don’t have a lot of friends. Oh, don’t pity me, I’m as fine with that as I am a nice slice of blueberry pie. It’s a common thing for those of us of the introvert ilk. It takes a lot to make me feel comfortable with someone. It takes a lot for me to open up to someone new. That’s not to say I don’t have compassion for everyone (even the despicable ones). I do. But I don’t see the need to have compassion for only friends. If you meet me but once, you get my compassion. 

But my comfort? A view into the  inner workings of my rambling, my musing, my daydreaming about things fantastical, magical, or etymological mind? That leaves me vulnerable. Too vulnerable by far. That, dear reader, is a long road to travel.

Usually. 

It was damn near instantaneous with Julie.  If I were so inclined to believe in The Fates, The Weird Sisters,  or kismet I’d say it was meant to be. But I’ve worked with technology for too long (closing in on a quarter century) to be anything but analytical. At least at first. But with Julie, there were far too many coincidences, connections, and crap that I simply cannot logic away to not give me pause. She has a running list of the inexplicable. 

I can’t even say it’s the shared experience of hearing loss. I’ve gotten to know some pretty awesome people through my work with HLAA. We share that connection, that vulnerability that inevitably comes with acknowledging a disability. Even a shared one. And we enjoy spending time together as we work to raise awareness of hearing loss. Some are even well on their way to being called “friend”.  

But some mystical cosmic powers are at work within the Hearing Things partnership. 

At times, I will go out of my way, I will make 10x the work for myself, if it avoids a conflict. But with Julie, I had no problem saying the beach is dumb. But with Julie, I kept making my point when Julie said hearing buddies are dumb. We stumbled upon that rare connection that easily survives a disagreement. What’s more, it thrives on it. Because there’s a mutual respect, a mutual trust. And that respect, that trust, means we don’t have to always agree. We’ve talked (and written) about some heavy, painful, tear-jerking stuff. Some of it will one day make an appearance on the show. Some won’t. 

Which brings me, finally, to The Man-huh-tan Project. (Yes, she even puts up with my puns!).I’m so grateful to her for doing this with me. I don’t have the personality to go it alone. I’m more Robin than Batman. (Tim Drake is my favorite) And I’m fine with that. The world Batman. But so too, does it need Robin. 

Buddhism talks about something called Buddha Nature. Or, more poetically, The Indestructible Drop. It’s like the Christian concept of a soul. This drop is in every sentient being. Not just humans. (Anyone who’s ever seen a dog think they were a people wouldn’t be surprised by this!) And after this life all drops return to the same ocean. And how do you separate one drop in the ocean from another? This interconnectedness means Robin is just as important as Batman. (Yes I really did just connect Buddhism with Batman.) 

I wax philosophically to show how much this partnership means to me. I have my strengths and Julie has hers. There is some overlap but we complement one another so well. That’s why, in my humble opinion, the show works so well. I want to share my experience so you, dear reader, can share yours. That’s why, in my not-so-humble opinion, the show is going to go on to help a great deal of people. You know why I think this? Because I’ve already been helped immeasurably by my partnership with Julie. 

In a linear sense, it’s only been two months. In an unexplainable sense, it’s only been a lifetime. 

Time is weird. 

Like The Doctor said, time is a “big ball of wibbly wobbly timey wimey stuff.” And I’m excited to see where the big ball takes Hearing Things with Julie and Brad.

They just keep coming,

Holy connections, Batman!

Strange things are afoot. 

We split up…

…but just for this week! 

My blog covers the trials of hair styling as a hearing aid wearer, with Brad’s contribution in this post as well.

Be sure to check out Brad’s blog post this week as he is covering the upcoming HLAA Walk4Hearing happening on Sunday, October 6, 2024 in Boston, MA.! Please consider a donation to the cause – and read all about it here: https://bradmckenna.wordpress.com/2024/09/02/walk4hearing/

I have spent the majority of the summer months with my hair piled mostly on the top of my head, secured with an elastic, as the untameable curls and waves are no match for the humidity and sea air of a Maine summer season. A variety of baseball hats and sun hats were also drawn into service to manage the Medusa-inspired locks that tumble off the top of my head when the temperature climbs above 71 degrees. I did employ my beloved trove of hair products and my flat iron –  that thing climbs higher in temperature than what you would use to bake some cookies in your oven – on several occasions in an effort to “neaten up” a bit when friends came to visit or when a situation called for me to look like a functioning adult as opposed to a troll that lives under a bridge.

The arrival of the day after Labor Day heralds the start of my 29th school year as an educator – and while that holds its own excitement, the dread sets in as it is also the renewal of my having to do my hair. I have to wrangle the tresses into some working order to simultaneously appear professional and minimize terrifying the children. 

I am sure most of you are reading this and thinking, “Well..what’s the big deal? Most of us have to ‘do’ our hair daily?”

Let me break it down for you…

It all starts with the hair washing – shampoo, rinse, apply conditioner, wait a few minutes, rinse. Squeeze excess water out of the hair, then quickly grab a wide tooth comb and untangle the rising curls that have waged war on one another and do not want to come apart easily. Hair product comes next – squirt the goop into your hand, rub your palms together, distribute evenly from roots to ends (resume the battle of the curls which have now gone after one another with the ferocity of a bench clearing brawl during a Bruins game). 

Due to the texture of my hair, I am not able to dive right into heat styling as I have found that the unruly mop requires some air dry time to chill out for a bit before it is confronted by a hot brush and a flat iron (sometimes a few blasts of a hairdryer, depending). 

So I wait. And wait. And wait some more.

In complete silence. 

I cannot put my hearing aids in while my hair has any hint of dampness in it as we all know by now – everyone say it together – “Water is the enemy!” 

I wait a little longer, unable to hear anything – and then I start getting antsy and frustrated by all of the things that I cannot do while I am dealing with the “in between time” in the hair styling process: 

-watch TV

-listen to music

-have a conversation

-make necessary (and unnecessary) phone calls

-chat with family and friends on FaceTime (especially my littlest niece who is my best FaceTime buddy!) 

-go for a walk 

-play with Rocky in the yard

-drive my car

-shop outside of the home 

And the list goes on. I am literally stuck in time and place at the mercy of my hair and its needed air drying time. I try to use that interval between washing and styling to get something done around the house or some computer-based work that doesn’t require communication, but it is not always possible. 

It is so annoying. 

The moment arrives where my hair is blissfully damp enough to withstand heat styling and while there is a feeling of glee at the prospect of this laborious process coming to an end – My joy is tempered by the reminder that I still need to remain in silence for another stretch. 

Hearing aids, heat, and protectant sprays to prevent hair damage from heat styling do not get along, either. One slip of the wrist and the flat iron grazes the hearing aid tubing or the over the ear computer mechanism, and it is a world of damage that I shudder to even consider. If I miss my aim at my hair clusters with the misting protectant spray and land anywhere near the hearing aid microphones, then there is a risk of a short circuit and costly repairs. 

I remain annoyed. 

I start the ritual of prepping my hair for heat styling, heat up the tools, and begin working on my hair section by section, bending it to my will – all in silence. I have no option to pop on “Good Morning America” or a podcast or an audiobook or my beloved Frank Sinatra to distract me and move this process along. 

The annoyance is great. 

After about 30 minutes I am either: 

1. Satisfied with the results 
2. Have had enough of not being able to hear my world

Whichever the reason, all of the hot things are unplugged, the final goo is applied to hold the style in place, the hearing aids are popped back in, and the world comes back to life – I celebrate by turning up some ABBA and dancing my way down the hallway to the start of another day, while blocking out the necessity of having to do all of this again in another 24 hours. 

Brad’s Hair Care Routine

Cut it once a month himself with clippers he bought. 

Exit stage left. 

I’ve said it before and I’ll say it again, it’s infinitely easier being a guy. I used to get my hair cut at Great Cuts or Great Clips or Cut Clips or whatever they’re called these days. But I can’t do a damn thing with my hair; it grows up, not down. If I let it go, I’d have an afro. So I would just tell the stylist, “Sides with a #2 and as low as you can go with the scissors on the top.” Nothing fancy or even all that difficult. 

But they always tried small talk. 

Trouble was, I can’t have my bionic ears in whilst getting groomed. Remember, water is the enemy. And the spray bottle holds water. To say nothing of getting little hairs in there or the cacophony that is clippers next to my aids’ mics. I used to wait until they put the cape on and then ostentatiously remove my aids. Hoping this would clue them in and they would either speak up or shut up.  All too often they’d do neither.

With my aids out, even with them standing behind me, they wouldn’t speak loud enough for me to hear. With their head down, looking at what they were doing, they would obscure their lips so that I couldn’t read them in the mirror. It was nerve racking. But like most things in this world, as a guy, I had another option. 

I stopped going and started cutting. My own hair that is. 

I’m not great at it. Even with a triptych mirror, it’s hard to get the back of my head. Fortunately, I’m tall enough so it’s not all too apparent. Or if it is, I’m scary enough (LOL) that no one says anything. To my face at least. 

Once I’m groomed, the hair is short enough that I need neither goo nor comb. When I start to get the faux-hawk that Weezy gave me by licking my head so much he taught it to grow sideways, I know it’s time for another cut. 

The only whisper of hair-care troubles I have is my beard. 

I didn’t have to start shaving until my sophomore year…of college. And my attempts to grow a beard in my 20s and early 30s resulted in a briar’s patch of many colors; brown, blonde, a smattering of gray even that young, and red. I kid you not. It was hilarious. Then I tried again in my mid-30s and it came in fuller. The coloring is quickly evening out. To all gray. I just wish I didn’t have the philtrum gap in my mustache. 

I still only have to shave and trim every couple of days. When I do, I take extra care to keep my lips clear. In the DHH world, lip-reading is life-saving. I know this and make sure my mustache doesn’t get in the way. 

And that’s it. That’s my haircare routine. Oh, woe is me, right?

As a career educator, I have welcomed inquiries and observations from my students, the more unhinged and honest the better, truly, because they are not holding back an ounce. My personal favorite was many years ago when an early elementary student approached me, pointed to my hearing aids and went on to inform me: “I know why you have those things in your ears…when you were in your mother’s stomach, you were a BAD EGG!”  His confidence in his statement and his unbridled enthusiasm to share this theory was so refreshing – and still makes me smile all these years later, especially as he is currently at the age where he may well have children of his own. 

I wish I could tell you that this was the strangest thing that has ever happened to me as a hearing aid wearer – but if it was, I wouldn’t have a blog entry to write today…interestingly enough, two stories that are at the top of the bizarre list were perpetuated by adults…

I was in one of my past places of employment some years back, and a fellow colleague with whom I had a minimally familiar working relationship with walked up to me while I was seated at a table, leaned over, tapped her finger on the over-the-ear machine of the hearing aid, said “huh” to herself and walked away. I was in such a state of stunned silence that I could not even muster a reaction – either verbally or otherwise – to that encounter. I never addressed it with this individual because I was just so floored by the complete lack of awareness, respect and personal space. I still cannot believe that my autonomy and existence as a singular, independent entity was boldly breached. 

Oh, but there was one even stranger…

I was in an eclectic shop stuffed to the brim with all manner of artwork, collectibles and tchotchkes the other day. I was standing towards the front of the store examining a shelf of nautical decorations, when my left hearing aid decided to start screeching its high pitched squeal which I am sure caught the attention of every dog in a 5 mile radius. This wailing is usually set off by a myriad of occurrences including, but not limited to, the following: moisture in the plastic tubing, my hair has fallen over the microphone, a crack in the tubing, hearing aid batteries losing power…and a million other things. Fortunately, most of the time I can conduct a fast assessment and make a quick fix by adjusting my hair, the tubes or the mold inside my ears.

At this particular moment, I had tilted my head towards my left shoulder and was trying to move my hair away from the microphone to finally silence this siren song. I righted myself and resumed my browsing, but I was blissfully unaware that I was being observed by a sales associate. I jumped when I heard a scratchy clearing of a throat which caused me to turn towards the origin of the sound, where I was met by a woman staring at me quizzically with a puzzled look on her face. 

Once again, as happens a million times during the course of a day, I had a split second to make a decision about whether or not I was going to disclose my hearing loss and offer some feeble statement about what I was doing while I was paused in front of the merchandise or just smile and keep moving along (or out the door) through this store. I was mercifully (or so I thought) spared from the decision making process, as the employee offered this gem of a statement: 

“Oh! I thought you were a pirate with a parrot on your shoulder! The way you were tilting your head!” 

I stared at her blankly, doing a rapid self-assessment to make sure that I was indeed awake and functioning in reality and that I hadn’t taken any mind-altering substances causing a hallucinatory episode, as I literally could not believe my ears. 

The salesperson took my silence as my not hearing her, and ventured to repeat (louder, this time and with the enthusiasm one employs when speaking to a small child): 

“OH! I THOUGHT YOU WERE A PIRATE!  YOU LOOKED LIKE YOU HAD A PARROT ON YOUR SHOULDER! BECAUSE YOU WERE TILTING YOUR HEAD!” 

I have now determined that I have not consumed anything that would lead to an alternate reality, that I was out of my bed and this was not a bad dream, and that this woman was pushing me to my personal edge of reason and thus towards a disclosure that I was not in any mood to make in that moment – 

I responded patiently and calmly (for me, anyway) with, “Nope. No parrot. Just a hearing aid adjustment, thank you…”.  I let my voice trail off as I pivoted and walked on through the store. 

There are so many moments in my day where I have to make the fast decision over whether it is worth it or not to disclose my hearing loss – and each one is as exhausting as the one that came before it. I am constantly assessing if it is worth it or not to reveal the hearing loss as most of the time my hair is down over my ears, rendering my hearing aids nearly invisible. The vast majority of the time, I am in complete control over disclosing or not – but in this instance, I was encountered by such a bizarre interaction that I wasn’t really left with a choice partly because I needed to clarify for this person that I did not, indeed, have a parrot on my shoulder nor was I a customer that warranted further monitoring as I moved through the remainder of the shop. 

I never thought I would say this – but human interaction as a person with a hearing impairment is really starting to wear me down, and I am wondering if those that prefer solitude and books may be on to something…sometimes it is just too “peopley” out there in the world. 

Check out Brad’s experiences here: https://bradmckenna.wordpress.com/2024/08/26/stranger-things-too/