Tag: hearing loss

Anticipation

Amy ClarkLeave a comment

Having dealt with chronic illness for the last 8 or 9 years, one of the messiest mental mud holes I needed to dig myself out from existed in a very simple sentence starter…which existed in variations of itself but always lead to the same deleterious effects. It always went  something like this: “Back when I  could…” or “The old me could have…” or “There was a time in my life when _____ was possible”. The trouble with these statements emanates from their constant glance backwards which blinded me to my current truth. And maybe that was my mind’s ulterior motive. If I was always idolizing and gazing back at the “old me”, then the current version of myself was only a temporary imposter. I didn’t have to accept this new human with her new limitations, in her new situation. She was a lesser version of old me and I didn’t really like her very much. Her life seemed less than the one I had been working so hard for so long to create. I wanted more. I wanted what I felt I deserved.  I looked to every outlet that might offer healing because this would not  (NOT) be what defined my existence for the rest of my life. This was a “right now” scenario and I would fix what people told me could not be fixed. I tried acupuncture,  chiropractors, physical  therapy,  vestibular  rehab, essential oils, neuro-otologists, audiologists, oral  surgeons, dentists (this list  goes on for a while, you get the picture). And while I might find relief, no one held the cure…the magic potion that would restore old me and extinguish new me. I felt I had tried everything to heal myself.

But sometimes…

…we have to look within first.

One day, in a moment of defensiveness, I told a friend,  “I have a neurological and inner ear disorder; I am hearing impaired. So what?!”  And it was one of the most freeing moments of my entire life.

I had said it.

Out loud.

In the world.

For someone else to hear.

I had spoken the truth that I had been working so furiously to deny and to walk away from. In that moment, I began to nurture acceptance rather than denial. In that moment, I began to slowly and steadfastly heal myself rather than futilely and frantically try to eradicate my disorder. The path toward acceptance possesses an inordinate number of thorns and there is no map to navigate it well. It requires resilience and dedication and also, as I came to learn, anticipation of who I was becoming rather than disappointment over who I had lost. I did not need to mourn that girl who could do some stupid number of burpees in two minutes…I did not need to mourn the adventures she would never seek (because let’s face it, “adventure” was never really my thing anyway)…I did not need to mourn any of it because she was still a part of me and together, we were becoming someone stronger, someone more beautiful, someone who despite limitations still had plenty to give to this world.

And so in anticipation of who I was becoming, I fought harder.

As 2020 wears on and I feel like so much in this world is changing and shifting, I once again find myself gazing backward. “Remember when we could…” “Remember when we didn’t have to…” “Remember the days before…” Of course we all remember all these things, they are a part of us and our stories. And for a substantial piece of our lives they dictated our narratives for us. They are not lost forever, though, just in a holding pattern of sorts…wrapped in bright paper waiting for us to unwrap them again when it is safe and maybe with the newfound gratitude we are all bound to feel for what was once just the everyday.

I  find myself making this note in my notebook at school regularly: “Anticipate who you are becoming in all of this”  It is a necessary reminder when the work of reimagining school on a regular basis grows exhausting and frustrating. It is a necessary reminder when I decide how I will  react or respond to those around me at work, at home, in my community. It is a necessary reminder that this is my story and I am not a static character. I am dynamic. I am changing. And I can shape that change and my attitude about it.

Opening my mind and my heart to accepting myself, presented some of the toughest work I’ve faced…and that work doesn’t end, maybe not ever. Some days issue considerable challenges while others tender feelings of accomplishment and joy. Regardless, all the days are situated in anticipation of who I will become on the other side of the struggle and what work I can do in the moment to make that person a better one than she is today.

Neither a neurological disorder nor pandemic can change that…unless I allow for it.

acceptance

Amy ClarkLeave a comment

For what seems like my entire adult life, careless eaters and their subsequent audible mouth noises have rendered me wretched. Crunching, smacking, squishing, gulping…all of it… every muscle within me would tense, while on the outside, I would futilely attempt to withhold visible reaction (though once my shiver pronounces it’s presence, it is hard to mask my irritation). I have no way of explaining the swift development of this distress in any given moment, other than to say it is intrinsic, instinctive. No frustrated thought process exacerbates my reaction and tolerance entirely eludes the grasp of my capabilities.

Despite this aversion in my adult years, I also possess vivid recollection of my mom having to correct me, repeatedly, for smacking when I was a kid. Looking back, I cannot fathom why it took me so long to learn that lesson. Obviously, my manners required refinement, but somehow the sound of my own chewing didn’t seem to deter me. I am not sure when the changeover occurred. I just know that in the same way that I suffer a full body reaction to cilantro when it evades my careful eye and ambushes my taste buds, mouth noises incur complete revulsion.

Despite years of living into this disgust to the point of it worsening, my life turned in a bit of a punishing direction. In the midst of the fury of my inner ear disorder, when it had reached the point of disability, I consented to a surgery that offered no guarantees but did generate hope for restoration. I knew going in that the surgery, whether successful or not, would result in muffled hearing in my left ear as it healed and as the packing inserted during surgery dissolved. I knew a tube would be inserted as well that would also complicate my hearing for a while, but given that my hearing was already complicated, this seemed like a small sacrifice.

A few months after surgery, the surgeon removed the tube and for about three days, my hearing returned to the quality it kept before I was sick…not just pre-surgery but pre-illness. Everything about my life seemed to hold greater clarity in those days-I heard my kids clearly without having to see their mouths moving to decipher their words, my thoughts were uninterrupted by tinnitus, and directionality of sound was restored. The smile on my face in those few days reflected the lightness and joy of my being.

And then the hole the tube tore closed up.

While my hearing remained improved, I quickly discovered that I was also hearing internal noises at a volume not conducive to calm and clarity of thought. Every beat of my heart sent a roar instead of a pulse. Every breath I took, a hurricane in my ear. Every turn of my head, yawn, and stretch accompanied by cracking and squishing–noises we aren’t intended to hear and remains sane. Every word I spoke echoed within.

And also…

Every bite of food I chewed, every sip I took played at full volume and there was no escape, no retreat. All of a sudden, the thing that drove me mad in others became a state of being and no amount of shivering in disgust would resolve the issue. If I wanted to eat and drink (you know, survive), I had to also find a way to manage my disdain for these internal noises. It was hard to explain this situation to others without being greeted with the attempted empathy of “oh yeah, I know what that’s like! Happened to me when I had a cold last year” Not the same. I’ve had colds before that elevated the volume of internal noise. I’ll say it again–not the same…at all.

I wish I could say this surgical consequence brought me new perspective on the patience I should show others before reacting, but it didn’t really. However, it did grant me a realization. Was this situation uncomfortable? Yep. Did it make eating disorienting and difficult? Definitely. But, here’s the thing, I wasn’t dizzy anymore. The tinnitus was gone. I finally functioned in the world, for the most part, like other healthy people (with a few restrictions). I was present with my family and friends. I had been given so much only to be annoyed by these noises that over time, I could learn to live with if I only tried to focus on the positive rather than on the grotesque.

100% effective? Let’s just say, I require reminders:) Just tonight, while attempting to enjoy a piece of pizza, I nearly quit the meal 4 times (literally)  because I just couldn’t take the eating noises anymore. Then I remembered there was a time that just chewing pizza held the potential to incite vertigo. I let my frustration go and I enjoyed the treat.

And I think that is the point. There are so many moments in this life to enjoy when we just step back, let go of the frustration, harness our gratitude and dive into the delight.

(Day 22:) Also, Orange team don’t be mad about the pizza! I promise I ran 4 miles today too!)

reminder

Amy ClarkLeave a comment

Since the surgery that mostly resolved my inner ear struggles, I have worked diligently to move beyond the trauma of the seven months of nearly constant hearing and balance issues. Trauma is a heavy word, one that implies lingering physical and mental damage. Anyone who has never spun with vertigo might think my use of “trauma” here is hyperbolic. Anyone, though, who has suffered even momentary vertigo can relate to the terror it invokes. It is hard to explain the confusion of not knowing up from down, the disorientation of constant movement despite sitting still, a statue frozen in time, the fear of not knowing…how long will this last? am I falling? how sick will I be? is this the rest of my life? It is hard to explain the heart racing, sweating, shivering, stomach twisting fury that a vertigo spell induces. No medicine can calm the spinning; it can only quell the nausea…and even that salve isn’t guaranteed. No medicine could promise me that I wouldn’t suddenly become dizzy in the middle of a day, in the middle of the grocery store, in the middle of playing with my kids.

That not knowing stalked me endlessly; I became guarded and began to withdraw. By May of last year, 6 months into this journey, I was nearly incapacitated and could no longer envision the possibility of a “normal” life. I questioned my every move, my every decision. I lost hope of ever being well. Honestly, before this moment, I don’t think I could have even written this much about how frightening the episodes during those months were (and there were more than I can count) in this kind of detail without inducing panic.

I have spent much of the seven months since the surgery unlearning all of that fear. I have spent much of that time working past episodes of absolute panic set off by a too vivid memory or by a simple trip to a movie theater. I have spent much of that time trying not to be in a constant state of waiting for my good health to disintegrate…for the surgery to fail…for the moment when once again I am fighting, clawing, scratching to maintain some sort of quality of life….for the smiles to once again be false and the moments to become hazy and vague.

I have done a great deal of really hard work moving on and I finally felt entirely successful there. So, why? Why when a colleague looks at me and says, “What are you going to do when your health fails again” am I suddenly thrown back into the shuddery shaky shroud of worry and concern. I am no closer to being unwell again just because she asked a question of me, yet my brain and my body now stand on guard…proving there is more work to be done than I realized.  Maybe I had only put a patch, a band aid on a wound that required more time, more cleaning, more attention and maybe some stitches? Maybe I let myself get comfortable and neglected completing the process of healing? Maybe I just wanted to be well so badly that I chose to ignore the depth of the concern in order to focus on life instead (though, is that really so bad?) Maybe this process will be a lot longer than I wanted it to be…maybe it’s forever?

But also, maybe it is a reminder of what it truly takes to be resilient. Maybe it is proof that even in the fear and concern, I still survive, thrive, live. Maybe revisiting my concern will simply grant me a gratitude I didn’t feel as deeply yesterday.  Maybe I am stronger than I realized and accepting that as my truth, even when I am tired of having to be so strong, defines and develops the steps I take into my future.

It’s all about the lens we choose to view the world through, I guess. And, truly, we are the ones who choose that lens. The work of that choice isn’t easy, but its significance hasn’t been lost on me today.

(Day 24…almost skipped today. A timely and unexpected power outage was going to be a great excuse to not write and to go to bed early. So glad the power came back in time for me to get this out. It was needed tonight!)