Boskone Recap #1: 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.


Life isn’t always “bouncy, bouncy, fun, fun, fun!”

Hey kids, let’s talk about DEPRESSION. Gather round, get comfortable, and I’ll tell you a story.

I wish I’d grown up in a world where kid shows covered things like that. Where we got taught when we’re young how to recognize the signs and symptoms of depression, how to work through it, and how to be good to ourselves while we do it. I’ve realized in the last few days that I’d been depressed for a few weeks now, and have been thinking about how to get out of the place I’m in.

There’s a difference between being depressed because you have bad things going on in your life, which sucks, and can describe most of my 2012 …. and being depressed even though you have good things going on in your life. That’s the tougher one, because while people understand why you’re feeling down when the power’s shut off and your spouse leaves town without you, they’re less understanding when you have a job, and friends, and love, and all the things we generally consider to be signs of winning at life.

I am, in general, winning at life: I have an apartment I like that I can, at least for now, afford; my son is doing well in school; I am loved, and while the details of which are still not up for discussion, it’s going in the right direction. I’ve made new friends recently, including someone who makes me laugh even when he’s being (purposely) obnoxious, and who encourages me to draw … and I’ve gotten back into art and comics, including scoring a column where I get to write about indie comics and share the things I love with other people. I feel like, in that sense, I’ve reclaimed a part of myself that had been on hold for a while, and it feels good.

So, what’s wrong?

Well, notice what got left out of that list. Dagan Books. My own writing. I noticed how little energy I had for work after I had recovered from the flu enough to be able to work, but didn’t actually have the drive to get anything done. I have about 6 hours a days that I can, and should, be spending on editing and promoting for Dagan Books, and writing my own fiction and non-fiction, and in the last week I’ve done … nothing. I was tired, I thought. I was still recovering from being sick (I do have a little cough still, so that’s not completely an excuse), I told myself. People told me to rest more and I’d feel better soon. So I read. I rested. I watched tv.

And I didn’t feel better.

I knew I had things to do and I didn’t care.

I started to think about it and realized this was the same way I’d felt a few months ago, just before Cthulhurotica got noticed by the Vaginal Fantasy Book Club, and I had to put aside my thoughts and deal with the deadlines in front of me. That worked for a while, but eventually the fuss died down, the sales slowed, and the bad feelings came back. I needed to figure out what was wrong, and how to fix it.

The problem with my writing is that I haven’t done any in months. I’ve been so focused on building DB, trying to make it into a profitable day job, because shouldn’t I? that I haven’t been doing the thing that makes me feel like I’m not a waste of space. Writing is the art I spent time on (I love drawing and printmaking and painting and all of that, but for reasons we won’t discuss here I didn’t pursue it, and so I don’t have the 20 years of practice I have with writing). Writing is the thing I think I’m good at. Writing helps me to connect with people and makes me feel like I accomplished something.

And I haven’t been doing it.

And I haven’t been doing it because I was focusing on all of the little things it takes to run a company, and the disappointments that go with it (poor book sales on one title ate up the good book sales from another title, and buying expensive ad space didn’t help) and the angry, stupid, awful people that occasionally go with it. I’ve had enough of people accusing me of not working hard enough, wanting to know whey I rejected a story and then arguing with me, telling me to go fuck myself because I didn’t buy their work, and suggesting that I could be doing better if only I did things their way.

I hate that before every con I go to I have to have a conversation with my partner about which publishing “professional” has been making uncomfortably suggestive comments about my breasts so he can stand between us at the bar.

And, more than anything else, I hate that I’m behind on deadlines I set for myself, that I can’t afford to make books the way I want to, that I haven’t pursued publishing non-fiction like I’d always planned, and that I’ve accepted work/stories/projects I don’t love in an effort to grow my business faster.

Basically, I disappointed myself. Solution? Stop doing those things.

I admit that I thought about quitting all together – just getting out of publishing and going back to writing for myself all of the time – but I have never been a quitter. More than my desire to see this through to the end is the fact that I genuinely love publishing books, and have put out/am putting out some gorgeous work I’m glad to have my name attached to. What I need to do is stop forcing myself to work on someone else’s schedule, stop taking it so personally that I get accused of not being a “good friend” anymore because I only want to publish quality work (in other words, because I don’t want to publish theirs). I need to stop putting out filler projects that I think will get me noticed by this person or that will sell well in that market.

I need to make the books I want, in the way that I want. Period.

Yes, this will mean that I put out less, even though I’m working harder. It will mean sales increase more slowly, and it will take me longer to turn DB into a decent day job. I may have to get a job working for someone else in the meantime, to pay the bills. I’m okay with that. Because in the end I’ll be making beautiful books, I’ll be known for the quality of my work, and people who like my taste can rest assured that I’m giving them something they’ll at least like, if not love. I’d rather build my company that way.

I have to make some decisions about what I’m doing with this year’s books, and I have to get back on track with getting them out. I have writing deadlines too, and that has to happen. I think this is the first step, to say how I feel, to figure out what’s been wrong, and to make a plan for the future. I certainly feel better getting this out there. I know now that if I can take the next step forward, if I can just sit down and write something, get some fucking work done, then I’ll be moving forward again. I’ll get my momentum back.

Maybe tomorrow.

A Little Update About My Real Life

Sometimes I’m reminded that because I rarely talk about my personal life, not that many people know that things are actually pretty good right now. Tonight I was told by a friend that he hoped my life got better soon and I realized I’d never told him that it already had.

Yes, a lot of 2011 and the beginning of 2012 sucked, and thank you, if you’re one of those who was still concerned about me. I’m doing well. There’s been a lot to do, starting over in my new life, with a lot of changes, and so yes, I am still behind on projects and deadlines, and I don’t like that. But I have been writing more, submitting and selling more, working on edits for Dagan Books projects, and generally being on the path to being caught up, even if I’m not there yet. I’m still poor, and prone to not getting enough sleep, and there’s been some necessary adjustments to my plans, but overall I wake up happy and I go to bed happy.

My life … has potential. I really like where I am, and what I’m trying to do now, and where I think I will be soon. I’ve sorted it out so that I can start at a local community college in the fall, and work toward a degree that will help me get a better class of dayjob, in a subject that will surprise no one who knows me – computer science. I will always be a writer but I like the idea of having a stable job in a field I love, writing at night and on the weekends, and having those two lives to keep me from getting bored with either one.

Part of what’s so good about my life now is having gotten away from people who were making it bad. Not having to deal with drama and stress every day changes your whole life. I get to choose who I spend my time with now, and the people I get to call friends are people worth making time for.

Bear with me if it takes a little longer to get to everything I want to do, but I will get there. And thank you, for supporting me when I needed it.

Theory of Objects

I have a theory that the way people treat their belongings is the way they treat their relationships. I don’t just mean romantic ones, because a friend is someone you have a way of relating to, and so is a family member. I know people who hold on to all kinds of photos and memorabilia of people who are long gone and vacations they took and in the same way they hold on to people from childhood that they have nothing in common with anymore but, “Oh of course we’re friends, I’ve known her forever!” I know people who will live with a leaky faucet or a table that’s too large for a room or a pile of stuff in the corner that their partner says they’ll take care of but never does – and the same people settle for unhappiness in their relationships, learning to live with it, getting used to disappointment, instead of simply making it better or moving on.

I knew that when my relationship with my ex went bad it wouldn’t be repaired because he was the sort of person who “threw out and replaced” rather than fix anything. As far as he was concerned, he could always buy more. He was spoiled that way, and so when it came to his relationships, as it turned out, he only wanted things his way and left behind (“threw away”) anything that didn’t work for him.

Over time I’ve started paying more attention to the way that I treat objects, and the way my friends treat their belongings too.

I would rather have a few useful objects than a lot of pretty ones. I will buy one pair of shoes that is comfortable and looks good enough and then wear them almost every day. In the same way I have a small circle of very close friends that I could spend lots of time with (without hating them or wanting to run away) and I am more comfortable this way. I do not have (and do not want) a lot of acquaintances that I can go to a party with or talk to over dinner once every few months but don’t know well.

I don’t look at an empty room and feel the need to fill it with stuff. Empty is nice too. In the same way I am comfortable spending time alone, and I like quiet.

I will hold on to a few important objects which have sentimental, not practical, value but only a few. As long as I have the memories, I don’t need the stuff to remind me. I prefer gifts which are useful (like books!), and don’t own/wear much jewelry or have knickknacks. I don’t have many photographs on the walls. In the same way, I don’t surround myself with people who make me look good or compliment me or on some other way serve to make me feel special (but aren’t really my friends). I don’t talk to members of my family that I don’t have a good relationship with. I don’t hold on to friends simply because we used to be friends (but have nothing in common now).

I like things that make me smarter. I will fill a room with books, I subscribe to literary journals, I own documentaries on DVD. I like to know who people who teach me something whenever I’m around them, who make me want to be more intelligent or better read. I already know that I’m smart and I don’t need to surround myself with people a little less bright or a little less special in order to make me feel better about myself. I don’t need to be the center of attention. I do need to feel like I’m a better person because of the people I spend my time with.

I would rather fix something that’s broken than replace it, if it can be fixed. I will replace buttons, sew up holes, repaint/re-finish furniture; I will hold on to a relationship that is going through a rough patch far longer than most of my friends would recommend, as long as I can see it getting better eventually. 

I am willing to do the work. I don’t wait for someone else to fix something for me. I bought a new bookshelf, it needed to be assembled, so I assembled it. Done. I don’t expect the other person to fix the problems in our relationship either – if we don’t agree on an issue, we discuss it, and if I need to change something, then I do. Problem solved.

I would rather spend time than money. I don’t just throw things out because if I can take a day or a weekend or even a few weeks and repair it, then it’s still useful and functional and not sitting in a landfill. Then I didn’t spend the money on replacing it that I could have spent on something else. In the same way, I would rather spend time doing activities with my friends than sitting in a bar emptying my wallet into a bunch of drinks.

On the other hand, I’m willing to spend a lot of money on just the right thing. I love technology, and when I needed a new scanner, for example, I bought one without any stress or worry about cost. I knew I needed it, I knew the new one would be smaller, more efficient, use less energy (it runs of a USB port without needing to be plugged into a wall outlet), and because I don’t spend money recklessly I knew I could afford it. In the same way, if there’s an event that I want to go to which will involve friends and conversation and maybe be a once-in-a-lifetime event, then I’ll spend the money on it. It’s why I won’t go out every weekend but I will go to a couple of conventions a year, even though both (over a year) probably end up costing the same amount.

I like clean/organized, and I’m willing to spend the time to make it that way. I would rather fix a problem now than live with having to work around it. I will spend a day reorganizing my bookshelves if it means I can find everything I’m looking for afterward. I put up white boards and make lists, I keep my files organized (and will spend an afternoon updating them instead of looking at a pile of paperwork sitting, ignored, on my desk). I saw that the bathroom door was hitting the fridge when it opened all of the way and instead of ignoring it, I moved the fridge. Problem solved. In the same way if I have a relationship that isn’t working in some way, I’ll say so rather than suffering silently.

When I’m done with something, I’m done. If I can’t fix it, it’s taking up space without being useful, or I’m only holding onto it because I used to use it but haven’t in a long time, then I get rid of it. Trash, recycle, donate, whatever, but the thing is out of my house/life, and I don’t miss it. I will hold on and hold on and struggle to fix a relationship but there comes a moment that I’m over it and then, I don’t miss it anymore.

Tin House / Electric Literature Reading at Powerhouse Arena Bookstore – A Recap

Yesterday afternoon I saw a post by Small Beer Press (on Facebook) mentioning that Kelly Link would be reading at a bookstore in Brooklyn and right about there I decided that I wanted to go – no, NEEDED to go – and then suddenly had to figure out how I was going to do that.

I currently live in New Jersey, towards the middle, next to Trenton, which is just over the river from Philadelphia. The bookstore is in New York, the city (and the state) making it a whole other state away from me.

The problem is, though, that I had to go. Not only was it Kelly Link, whose work I adore, but Tin House and Electric Literature (warning, current cover art – posted on their home page – is NSFW), both great markets that are nearly impossible to get into, and it was a chance to adventure into Brooklyn, where I’d never been. It was also possible, thanks to a combination of trains and subway rides, and since I’m due to leave NJ for upstate NY in a few months (where there are no trains) it was a trip I won’t always be able to make. This particular event would never actually happen again. Add to that my feeling that as writers we’re not just supposed to write but also to read, to listen, and to learn from the writers we admire. To not attend these kinds of events is to sit alone in our apartments, only learning from ourselves. Continue reading