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.
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