I think I’m going to lose my ear this year
What an ironic thing it is to mourn something that’s caused me so much pain.
I’ve lived with chronic illness long enough to know there are things you see coming — a flare, a change in medication, the need for a second opinion — and then there are things you don’t. Those surprises hit you like a bottle rocket to the spine, all violence and steel. They jolt you to your core. They make you question literally everything, because, real-life example incoming: I think I’m going to lose my ear this year.
I wish I could say that was a groovy euphemism for something, but it’s a literal statement. And I feel at a total loss for how I’m supposed to move forward with that information flashing around like a neon sign inside my skull.
I’ve lived with chronic ear disease my entire life, and it’s actually the origin story for why I’m disabled. I’ve had 16 surgeries, the majority of them on my right ear and mastoid bone. That IV antibiotic I was poisoned by as a teen? That emergency reconstruction I had in 2022? That three-month stint with facial paralysis while freshly post-op? Ear, take a bow. We’ve been through a lot together, and it’s a part of my body that has caused an incredible amount of pain and grief for my entire life… so the possibility of a permanent breakup should feel freeing, right? RIGHT? Try again.
The context
In 2022, I had something called a canal-wall-down tympanomastoidectomy. In friendlier terms, it essentially means that my ear canal was widened and combined with my mastoid bone to make one gigantic cavity (think: a loft with an open floor plan). It’s not an easy operation to recover from, especially when you’ve amassed as much scar tissue as I have over the years, but it does give surgeons like mine a larger space to clean out — especially when you’re prone to things like cholesteatomas, which I am — without needing to be under anesthesia.
That whole first year, the surgery was a huge success. My surgeon was able to routinely clean the cavity and keep it dry, and infection was nowhere to be seen. We loved that for me! But then came the drainage, which has only gotten worse (my poor pillow), and my immune system’s inability to chill out. Now, the cavity has started closing on its own — and an expiration date looms near.
At my most recent appointment with my surgeon, I emotionally prepared myself to start talking through another reconstruction — opening the cavity up again, hoping to buy us more time as I try to get my lupus symptoms under control. But, apparently, I’m out of options and the clock is ticking. The only choice I have left is to lose everything that makes my ear, well, an ear.
The details
The surgery I’m up against is called a blind sac closure (I’ve also seen it referred to as an external auditory canal closure). It basically means removing everything on the inside of my right ear — my eardrum, my hearing bones, the eustachian tube — and then taking fat from my stomach to completely seal the canal up. I’d still have my earlobe, but that’s it.
So, if you’re following the anatomy of it all, your next question is probably, “But Kat, what about your hearing?” Well, in good news I suppose, I don’t have much of it left from an inner ear perspective. But I kept waiting for the canal to be completely dry so I could go back to wearing a hearing aid. However, with a blind sac closure, a hearing aid is obviously out of the picture. So, if I’m interested, I’m a candidate for something called a bone-anchored hearing aid, or BAHA. I still don’t fully understand the mechanics of it, but it would essentially mean getting an implant in my skull to restore some level of hearing through bone conduction.
Aside from the aesthetics or any other kind of complication, the real kicker of that particular piece of the puzzle is that that portion of my brain/skull where the implant sits would no longer be able to be visible on an MRI. For a lot of people, that’s an easy bet to take. For someone like me, who has very routine brain MRIs, it’s more of a gamble and something I really need to think through.
The decision
After writing all of that down, I realize I’m just delaying the inevitable. For the safety of my life, I’m going to need to move forward with the surgery. I’m out of hail marys. An ear can’t perpetually drain without eventually growing bacteria, and having an autoimmune disease means that my ability to fight infection is nonexistent. And while all of the logical dominos line up like little suburban matchstick homes… I’m still going to lose my ear at the end of all this — and I’m not handling it well, alright?
What an ironic thing it is to mourn something that’s caused you so much pain. I’ve heard the same can be said about people, so the personification of a body part makes sense (at least to me). I’m quickly learning that you can grieve something or someone that’s actively hurt you. The hurt is different, but it’s still there, poisoning the cracks like carbon monoxide.
It’s very purposeful why we don’t use words like “battle” or “fight” at Alive and (un)Well, but I’m going to break the editorial guidelines I helped set and say that I feel like I’m losing the war. At what point does my suffering become worth it? Is this decision a punishment or a gift? Where is the meaning in this? Why me? I’m so tired.
People always ask what they can do to help me in a particular moment, and oftentimes I’ve got nothing to request because my overarching circumstances can’t be changed. But today I’m going to ask you for one thing: Appreciate your body and what it’s been able to do for you lately. Even if it’s not working the way you need it to, even if you ache in more places than you feel good; try and savor the things that are in your favor. Because one day they might not be there. One day you might lose a part of you — something so fundamental to your being — and you’ll have to learn how to live a life without it. Just… do that for me, will you? I owe ya one.
I'm so sorry to hear that. The part about where you live with chronic illness long enough to know you dont see some things coming is so spot on. I've had two new diagnoses this year as well which will both need major surgery so I'm at a loss as to what to do or even how to cry for now. Sending my thoughts to you x
Wow, it's a lot. I'm not sure if you are looking for practical suggestions but we have a neighbor who has a "soft band BAHA" which is fully removable (he was born with only one ear). I don't know if this is an option for your situation, and it is very visible, but you might want to look into is since it won't make issues for MRIs. Good luck with all this and everything!