Boskone Recap: So You’re on 4 Panels and No One Knows You’re Going Deaf

Two weeks ago, I attended my first Boskone, and I had a great time. It was the best mix of fun and friends and panels – four of which I was on as an invited panelist – and there was really only one big “oh hell no” moment of the whole convention (more on that later). But before I can talk about the drive, the food, the hotel, the wonderful people, I have to talk about something I’ve been avoiding:

I’ve lost a lot of my hearing in the last few years and I can’t hide it anymore.

To begin with, I wasn’t purposefully hiding it. A few years ago I’d noticed that I wasn’t hearing as well as I thought I should, and had it checked out. After a hearing screen revealed a significant amount of loss, I had more tests, saw specialists, had an MRI, and was diagnosed with otosclerosis. I looked at the treatment options, which basically consisted of surgery, and decided that I could live with where I was. Rather than have someone stick a scalpel into my ear and wiggle it around, I’d just accept and adapt.

That worked fine for a while. I learned to take seats up front in class, make sure I was facing someone when they spoke to me, and got much better at reading lips. Compared to the disabilities many people have to live with every day, this seemed like an annoyance but not truly disabling. Except that otosclerosis doesn’t get better over time, or even level out. It gets worse, and mine got worse faster than I was hoping.

I’ve lost 70% of the hearing in my right ear and 40% in the left. I’ve lost mainly low tones – which cuts out people speaking, especially men. I’ve lost enough that I can’t play the violin anymore, and after it sitting in my closet for a year, I donated it last week. I can still hear my son speaking (his little kid’s voice is high-pitched still, and he tends toward being loud anyway) and music when loud enough or I’m wearing headphones to cut everything else out, but I get startled easily because my boss has walked up behind me and I didn’t hear it. I have to say, “I’m sorry, what?” or “Are you talking to me?” on a regular basis. I’m starting to speak too loudly or too quietly because I can’t tell the difference; in my head I’m still the same volume as before. It’s difficult for people to tell how much I can hear when they can see that I still notice higher pitch sounds coming from the other room, but don’t always understand what they’re saying to my face. In addition to all of this, I get intermittent ringing in my ears as I lose new tones, and the fuzzy white noise of my own blood moving through my head can be very loud at times, and sometimes I lose all sound/sense of space on my left entirely.

Having people assume you’re not bothering to pay attention is hard enough when it’s coworkers and friends. What about when it’s late at night and you have to ask someone sleepy to repeat what they just whispered, and what you missed was, “I love you”? My persistent (but totally unfounded, I know) worry is that someday they’ll get tired of saying it twice.

Boskone really brought the depth of this problem to the forefront. Being on panels meant I had to position myself at the far right of the table, so the other panelists would be on the side most likely to be audible, sometimes after other panelists had already taken their seats. (Everyone was very nice about moving once I explained.) I didn’t hear the entirety of the conversation up at the panelist table, and I didn’t hear almost any of the audience questions, because there wasn’t a mic for the audience members. I smiled at more than one person, when hanging out in a group of friends, hoping that was a suitable answer to what was probably a comment aimed at me. I participated in the Sunday morning flash challenge, but lost points when the judge on the end couldn’t hear my reading since I’d spoken too quietly without realizing it. A man standing next to me on an escalator said something I couldn’t hear, and when I said, “I’m sorry, what?” his response was “Don’t worry, it wasn’t sexist.”

He’d assumed I’d heard him and just didn’t like what he’d said. That happens a lot.

So. Now what?

I’ve told my work that I have this issue, and we’ll see if that helps there. I’ve started the process to schedule the surgery, which scares me but at the same time I no longer feel that I have a choice. The surgery isn’t guaranteed to fix my hearing, by the way. It doesn’t guarantee anything, but if it’s successful it will most likely only stop (for now) or slow the progress of my loss. I’ve started telling people what’s happening with me, so that at least I’m not offending people who don’t understand that no, really, I’m not ignoring you on purpose. (Those who know and choose to be jackasses are not my problem, but so far, that’s not been many.) I’ll continue to work to make it easier for me to understand others, including moving my work desk this week, making sure I’m facing people when they speak to me, and being honest about what I can hear and what I can’t.

What can you do?

If we’re at a convention and you’re on a panel with me, sit on my left. If you’re moderating the panel, please repeat an audience question before any of the panelists answer it (not just for me, but for the rest of the audience, too). If I’m speaking too loudly or too quietly compared to the rest of the people in the conversation, assume I don’t realize it and let me know. Move to where I can see your face if you’re speaking to me, or do something to make sure I know you’re speaking to me (instead of someone else in the group) before you address me. Saying my name works just fine, and so does tapping me on the shoulder or arm.* Know that listening to one person in a quiet room is vastly easier for me than listening to one person speaking as part of a group of five or twenty people speaking all at once, or in a crowded bar or hotel lobby. This means that you might not have to make any adjustments when we’re hanging out alone but suddenly have to be more conscious of how you speak to me in a restaurant.

Remember that I want to hear you, I don’t mean to be ignoring you, and I don’t mind putting effort into making our conversation easier, if you just let me know that you want to be heard.

I hate the idea that I’m making anyone go out of their way for me, and if it only impacted what I heard/understood, I wouldn’t be publicly saying this at all. Unfortunately, my hearing loss has started to affect what others think of my opinion about them, and I don’t ever want to make a fan or friend feel that I just didn’t bother to listen.

Thank you.

* I know this opens me up to being touched by strangers, which isn’t ideal at all, so please use your best judgement about whether tapping me on the arm is really the only way to get my attention at that moment. If it is, and you’re polite about it, I’ll understand.

Edited to add: Someone mentioned this on FB, and I agree. Please do not say, “Oh it wasn’t important,” when I ask you to repeat yourself. You’re assuming that I didn’t want to listen the first time, and you’re feeling slighted when in fact I just couldn’t hear you and actually want to know what you said. And then you’re making me do even more work to coax it out of you, because I don’t want you to feel slighted, and I do want to be a part of the conversation. Plus, refusing to repeat it means you’re excluding me from being able to continue as a part of the discussion, and deciding for me what is and isn’t important to me. You’re important to me, and I wouldn’t have asked you to repeat it unless I did really want to hear it the first time.

#SFWApro