Can we talk a bit about chronic illness?

Specifically, acid reflux. I want to talk about my reflux.

I’ve been holding back so much from my public life. I’ve stopped blogging here almost completely because I always feel that any post here has to fit my “brand” — whatever my brand is. I think the problem became me trying to fit myself into some mold I’m not; trying to always be camera-ready, even in my writing.

When I first started blogging I talked about everything that was going on in my life. I didn’t hold back. Over time I decided there were some things I’d prefer to keep private, but generally I still blogged about my life. And then I became a writer, and suddenly I needed a writing blog.

I’m tired of this. I’m tired of feeling like every post here has to relate somehow to writing or reading or literature or just “My life as a writer” as if that is separate in any way from the rest of my life. I’m tired of feeling like there needs to be a theme for my blog. There is a theme: me. There is a brand: a genderqueer, disabled, chronically and mentally ill writer who tries to pen books when zie’s not feeling like absolute crap, and who has fucking had it with the stigma around talking about one’s illnesses.

So today I want to talk about reflux. Warning: this post will contain some graphic description of the effects of acid reflux. Not recommended for emetophobes.

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Wolffy and the Terrible, Horrible, Very Bad, No Good Birthday Week

With apologies to Judith Viorst.

Last night, after midnight so really this morning, I discovered something terrible.

There is malware on two of my sites. This malware redirects you to porn or something else if you try to visit the mobile version of the site. It has no affect on the desktop versions that I can see, but use an iPad or phone to access the website and you’re going to get porn. Or taxi services. Or something.

This site is not one of the affected sites. The affected sites are, of course, my mom’s site and my publishing site.

I stayed up most of the night trying to fix the problem. Today is mom’s birthday and I wanted it to be…well, malware-free at least.

At around 4 am I noticed there were buzzing insects in my room (which is also the library). A lot of them. A lot of black and yellow buzzing insects.

Fuck. Wasps. About 8 in the room and TEN ON THE WINDOW OUTSIDE, TRYING TO GET IN.


I tried to close the window but I’m not strong enough. I was talking with the fiance and he asked if there was anywhere else I could sleep. No, I said. There’s the bed in the library or the floor in the kitchen, the floor in the bathroom, or the unfinished floor in the living room. That’s it.

What about upstairs on the floor with your mom and the dog?

Then I’d wake her up, and how better to truly ruin her day?

I decided I’d sleep in the library and just pray to the gods I didn’t get stung. After I announced my plan to the Ogre, the wasps got angry. They heard what I’d said. They didn’t like my plan. They started divebombing the lamp, flying close to my face, buzzing with purpose.

I said a hurried goodbye to the Ogre, clicked off Skype, and grabbed my pillow and blanket and ran.

I slept on the bathroom floor. I figured, it’s heated and I can put towels and bathmats under me. Shouldn’t be too bad.

I was wrong.

Mom found me at 7am. She got me up and sent me upstairs to sleep on her bed and get an actual rest.

My back still has not forgiven me.

And then, as if sleeping on tile wasn’t enough for my poor body, at some point during my blissful sleep on mom’s bed I woke up and got up on one elbow, as if I were about to leave the bed. I then fell back asleep in that position and woke up a few hours later, still up on one elbow. My entire arm and left side had gone numb. I turned over onto my other side and the feeling started rushing back, undulating waves of numbness and tingling, dancing out blue and green in my brain.

I ended up getting up around 2pm. Mom was not in a good mood, but the wasps were gone from the library at least. The malware is still on the websites, and I am still trying to fix it.

But this story is a perfect example of how amazing my mom is. She woke up on her birthday to find me curled up on the bathroom floor because of a wasp infestation — another problem she has to deal with — when she’d gone to bed right after we discovered the malware problem. She went to bed with bad news and woke up to bad news, and you know what she did?

Sent me to have a good sleep in her bed.

Then she started baking koek.

With a still-broken foot.

And now we’re at Breakwater Books, where she plans on hosting the Live Poets’ meeting. (If anyone shows; summer fell on a Saturday this year so everyone is out enjoying the sun. If no one shows, then she and I get to sit and write and read for a bit, which is awesome.)

I’m fairly certain that, ’twere I in her shoes, I would have crawled into my closet, cried, and left the Ogre to deal with the mess in our lives.

I don’t know how my mom got so good at handling crises. But she’s fantastic and she keeps me going, even on a day that’s supposed to be for her.

And even on days when it gets to be too much, when she just has to have a good cry, she does so. She lets herself feel her emotions. And then she picks up the pieces and keeps going. She doesn’t let anything get her down for very long at all.

So. You may wonder: how do I write such resilient, persistent, strong and brilliant female characters in my stories?

I have one hell of a role model.


PS Mercury is retrograde right now. I’M JUST SAYIN’

The Joys of a Summer Birthday

When I turned 14, we tried to organize a party for me. My birthday is August 14th, and even though school started the last week of August in Hawaii, most people were still on vacation for my actual birthday.

Regardless, we kept trying, but every date fell apart. Every time mom put off the ordering of the cake, until finally in September, on the 25th, she came home with this gorgeous chocolate number with a marzipan lion on the top and said “Happy birthday.”

Best. dessert and breakfast. ever.

When I turned 15, my mom planned a surprise party for me.

I had no idea. She’d kept it a complete secret.

She’d invited my Aunty Marsha and my friend Noelle and, because she didn’t know people in the drama program at my high school very well, she’d asked a friend of mine there if he would invite the people there that he thought would want to come. She reserved a lunch-time table at Koho’s, which was the fancy restaurant for the middle class in Maui, and then kept completely silent until my birthday.

My birthday arrives, and after a really awesome wake-up that probably involved opening presents from her and having chocolate-chip pancakes I got dressed and we headed out to Koho’s.

We walked in to find a table with 16 empty spaces and Aunty Marsha and Noelle taking up the other two.

I was really surprised.

Apparently the above-unnamed friend in the drama program had totally bailed on inviting anyone to the party or even showing up himself, and hadn’t bothered to tell my mom. (That, or no one in the drama program wanted to come to my birthday — while either is likely, I’m betting on the first one. I did have some friends in high school.) Hence: a party with four people.

In the end it wasn’t bad. I honestly was just happy that two people had showed. We had a great lunch and afterwards Noelle and I got to be mall rats for a few hours — I bought the game Legend of Dragoon for the PlayStation One and maybe some other things, but Legend of Dragoon is what stands out in my memory. Then we decided to go to the top of Haleakala to watch the sunset. We got up there, saw the sunset, and then in the freezing cold that is 10,000 feet above sea level with the sun below the horizon, our car broke down.

We managed to catch a ride down the mountain with some nice dudes in a truck, and when we got back down we dropped Noelle off at her house, where her dog bit me.

At this point I had to start laughing, because the whole day had been such a comedy of errors.

When I turned 18 I had to work on my birthday. It was tech week for the show I was assistant-stage-managing, and we were doing a cue to cue and light refocusing.

I was determined to be optimistic about having to work on my birthday because I was turning 18 and could visit the porn shops and get a tattoo, both of which were really important things to me. I did actually end up getting that tattoo during my break — an Eye of Horus on my right inner wrist.

However, when I got back the director and the stage manager decided to have a screaming fight over half the theatre, the stage manager using the PA system (or “Voice of God”) to make his point. Shakily, upset by all the yelling, I went outside to stand with the actors having a smoke. Dale, that fabulous man, put his arm around me and said in his wonderfully scratchy voice, “Welcome to birthday hell, darlin.”

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