When everything's about to change
Bring on the robot GIFs.
Have you ever stood at the edge of a cliff and looked out into the abyss and just knew that if you moved an inch, your life might never be the same? I haven’t, because cliffs scare the shit out of me — the whole not having a vestibular system really egged on that fear — but I imagine this is what it feels like if you did.
I’m writing this essay in my car after my most recent pre-op appointment. (I do great thinking in my 2012 Escape. Sue me.) If you’re reading this on the day it’s published, that means tomorrow is my surgery to get a bone-anchored hearing aid (BAHA) placed — it’s basically a magnetic cochlear implant. And admittedly, of all the surgeries I’ve ever had (this will be whopping #17), this one is a lot less “scary” and more defined. It’s a precursor to the big one, in the hopes of some sooner-rather-than-later quality of life improvement, while my autoimmune chaos continues to get sorted and my team closely measures and monitors my ability to heal from such a voyage.
I’ve lived with hearing difficulties for my entire life. I had a hearing aid in high school and college (one of them was sparkly!), and while it was really helpful, I ultimately got too many infections for it to be a sustainable option in the long run. But my hearing loss, which took a definite hit after the major ear and skull reconstruction I had done in 2022, never really bothered me until the past few years. I always accommodated it by strategically positioning my body/head in conversations and by reading lips. But lately the inaccessibility has crushed me. I think my audiologist explained it best: Your brain has to work really, really hard when you’re not hearing at full capacity, which means you get tired far faster than the average full-hearing human. (This is where I enter today’s health fun fact that hearing loss and dementia have a very strong correlation.) And while for some people that level of cognitive fatigue isn’t as notable or damaging, I’m already up against a non-negotiable barrier that is my vision (in case you’re new here, I have a disorder called oscillopsia), so having two senses completely wrecked is literally stripping my soul like a plastic cup wallowing in paint thinner.
A lot of people in my circle are excited for me (my brother will literally not stop sending me robot GIFs and I’m here for it), and I think I’ll be able to wrap my head around that joy and join them soon. But first I need to get through the procedure, the hospital stay, the recovery, and the post-op appointments.
I don’t want to mince my words, though — I am excited for the outcome. It might mean I can’t religiously wear headbands like I have my entire life, or I have to part my hair a different way so the sound processor has less of a barrier between it and the magnet. But this summer I’ll be able to hear conversation in a room that I’m not in. I’ll be able to hear my dog lap up water while I’m perched cross-legged on the couch. All of those little life sounds I’ve been missing… I’m greedy for them. It’s the wildest, most base need I’ve experienced in a long time.
It’s funny because I have walked this road so many times, but it only gets harder. I’ve experienced post-op infections, facial paralysis, dangerous allergic reactions, slow-as-molasses recovery times. I’ve “celebrated” Christmas in the hospital, complete with hallway carolers, and spent New Year’s Eve by myself with nothing but a styrofoam cup of water with “Happy NYE” written on it. I’ve banshee screamed because of pain in the middle of the night, got my dad to smuggle in ice cream in a Yeti mug, and even asked every single person in the post-op recovery wing if they were happy (pretty sure everyone said yes, but I sure don’t remember).
Surgery has this wild hold on me to make me ponder my mortality. What if this is it? What if I don’t wake up? What if my surgeon gets in there, realizes I have a mass (been there) or a skull-eating bacteria (also done that), and the beacon of hope that is the future of my hearing is but a mere memory? Sounds dramatic, maybe. But every single time I’m asked for my advanced directive, I am gutted with fear. So here’s the point in this essay when I drip tears onto my steering wheel and expose my heart in earnest.
In a book I was reading the other day, one of the characters said the words, “You did so well” to her best friend who was dying. I wept, realizing my emotions went far beyond the confines of that novel… and then it hit me. I want that to be something someone can say to me before I die. That I did well. That I did everything I could to make sense of a life that wasn’t always fair, but was still full. I want another person to look back on everything I’ve gone through — like getting this big ‘ol magnet implanted in my skull — and let me know there was meaning to it. That I did the best I could in the shadow of big decisions and impossible circumstances. I don’t think that’s too much to ask for, do you?
So here’s to doing well, and hopefully hearing in technicolor one day very soon.* Oh, and hospital quesadillas. I can’t wait to order several of those bad boys bedside.
*Soon, as in like six weeks, because that ish needs to heal before I can gracefully slap the sound processor on. But “very soon” felt more poetic, ya know?
Appreciate this honesty and bravery—some pre-surgery feelings I've had before, some that are just good to hear from another human. Sending all the lucky charms ☘️🌈💖⭐️
Wow, good luck with your surgery! I hope everything goes better than you could have ever hoped with no unpleasant surprises!