Narcolepsy

Warning: this post contains tangents and rambles.  It is a work in progress, but I”m impatient to get at least something out.

Somehow, I am due for several kinds of doctor visits all at the same time.  I don’t have a dentist, eye doctor, or primary care physician up here yet, despite having moved to the Boston area almost a year ago.  I’ve also been looking for a sleep specialist in the Boston area for the last few weeks, and have finally, finally managed to actually schedule an appointment. In addition to my own doctor search, my very best friends (and now roommates!) have been working tirelessly on a website that will (very soon) be a comprehensive guide to healthcare for trans/genderqueer people worldwide.  And, as everyone who is paying even the tiniest bit of attention to things that are happening in this country, healthcare is kind of the buzzword of the moment.

I have been thinking a lot about healthcare lately.

I have also been thinking a lot about narcolepsy.

Narcolepsy has been part of my life since I was fifteen.  That was the year I first started having symptoms, though it took me some time to connect the dots.  I was a sophomore in high school, the school year had just started, and I was suddenly very, very tired sometimes.  Overwhelmingly, must-put-down-what-I-am-doing-and-sleep-NOW tired, but only some of the time.  Which then became most of the time.  I started to fall asleep in class.  I managed to fall asleep onstage during a production of ‘A Midsummer Night’s Dream’.  I got pretty good at pretending to be awake while I was actually asleep (or at least I thought I was good at it).

After a few months of this, I went to a doctor.  He was an allergist/pulmonologist, not a sleep specialist, but I was referred to him because my PCP thought that maybe this was the result of an allergy to the cat my family had just gotten.  Maybe allergies kept me up at night, and therefore I was too exhausted to stay awake all day.  Except that the allergy tests that this new doctor ran concluded that I was not allergic to cats or anything else, except for mold, a little bit.  His solution was to suggest that I try to stay awake as late as possible each night, so that maybe I’d be tired enough to sleep through the night.

It didn’t work.  After about a week of sitting at the kitchen table after dinner and homework, playing game after game of Monopoly and Trivial Pursuit with my mom, until I started to beg her to let me go to bed, please, even for just a few minutes.  And so we gave up.  And the new doctor told us that if I wasn’t willing to try hard enough to stay awake, then he probably couldn’t help me.  And that sometimes problems like this turned out to be rooted in psychological issues.  So clearly, it was my fault that I couldn’t stay awake.

Anyway, long story short, the next six months were borderline hellish at times, and just ok the rest of the time.  Then, one day, I was on the internets (o internets), and a small box on msn.com’s home page caught my eye.  It was a quiz called ‘Could You Have a Sleep Disorder?’ So I took it.  And, lo and behold, I had all four of the most common symptoms of narcolepsey.  Hmm.  I mentioned this to my pediatricial at my next appointment, a few days later.  And she admitted that she knew next to nothing about narcolepsy (yay for doctors who will admit they don’t know!), but that a new sleep specialist had just opened up a practice in our area, and that she could refer me to him.  And she did.  And he (new specialist) did what someone should have done six months before; get me to a hospital and have a sleep study done. Duh. Conclusion: I have narcolepsy.  Not only am I narcoleptic, but I’m a rare narcoleptic: I have all four of the main symptoms of narcolepsy.  (They are, for those who are curious: excessive daytime sleepiness, cataplexy, sleep paralysis, and dreamlike hallucinations. And yes, I am somewhat proud of being rare).

So I was put on medication that helped me stay awake, and I kept seeing my sleep specialist, who is the most hilariously fabulous man ever, even after I moved to Massachusetts and had to travel in excess of four hours each way for my twenty minute visits with him.  Until now.  I haven’t seen him since April, and at each visit he can only prescribe three months’ worth of meds (because I take a controlled substance, and there are rules about such things), and so as of Tuesday, I have been off of my meds for a month.  This is longer than I have ever been drug-free before, and to be honest, it has been difficult.  I had gotten used to not having to worry about whether I’d feel too sleepy at work to do my job effecctively without caffeine.  I estimate that I have ingested more caffeine this past month than I had in my first ten years of life.  I have been grouchy and irritable and sleepy and narcoleptic all month long, and I am so ready for it to end.

(a note: I fell asleep at least six times while writing this post)

Published in: on August 7, 2009 at 12:55 am  Leave a Comment  

Naked Comedy

So last night I went to the Naked Comedy Showcase at Improv Boston.  It was…exactly what it sounds like: a bunch of naked people doing stand-up comedy, improv, spoken word, etc.  I had been talking about going to the showcase for awhile, but ended up going last night both because the founder, Andy Ofiesh, performed at Boiling Point Burlesque on Saturday night (more about that later) and he was pretty damn funny, and also because Honey Suckle Duvet, a burlesque dancer with the best stage name ever, was performing there for the very first time.  So after trivia night at a bar in Cambridge, which was lovely, I proceeded to the comedy show with two friends.

And it was good.  I had fun (yes, despite the very high penis:vagina ratio).  Honey Suckle was amazing, as always.  There was a particularly humorous bit about the difference between tapenade and chutney.  There were funny routines and…less funny ones.  And I thought about it the whole way home.  I kept chuckling at different funny things that had happened, kind of laugh-groaning at some of the less funny parts, and thinking about how it took some serious (pardon the expression) balls to do something like that.  Forget about the nudity thing, and these people are still getting up on stage in front of a bunch of strangers (and maybe some particularly supportive friends) and performing.  That, alone, is pretty fucking scary.  And then doing it naked? Terrifying.

Then I started thinking about how it’s kind of weird that I feel that way.  Because I love burlesque! I enjoy taking my clothes off onstage, in front of a lot of people! But there’s a huge psychological line between bra/bootyshorts and completely naked.  There’s even a huge line between pasties/thong and completely naked, and I’m not even ok with pasties yet!  Why is that?  Why is there such a big mental difference, even though it’s really only a few square inches of actual flesh (depending on your choices of pasties and underwear, I guess)?

I’m not really sure.  I guess right now, mostly unclothed is good enough for me.  Considering that two or three years ago I wouldn’t wear tank tops in the summer, or skirts, or shirts that showed anything past my collarbone, or shorts shorter than my knees, because I hated my body so much, the fact that I got up onstage in front of a bunch of people on Saturday night and danced half naked is a pretty big accomplishment.  The fact that I even considered wearing pasties? Mind-blowing.

So thumbs up to those who participated in the Naked Comedy Showcase last night…maybe in a year or two I’ll be up there with you.

Published in: on July 2, 2009 at 12:13 pm  Leave a Comment  

Something to Think About

A reminder to myself:

If you’re worried about being too inarticulate, too inexpert a speaker or writer, too much of an imperfect ambassador for fat, remember that some folks find it plenty subversive that you’re daring to speak at all. You don’t even have to talk about fat; just be a fat woman talking. That oughta get their goats.

said (very well) by fillyjonk in this post

Published in: on June 12, 2009 at 5:03 pm  Leave a Comment  

The Food Police

I am fat.

It has taken me a really long time to be able to say that out loud. It’s true, though. I’m fat.

I also work in a grocery store.  These two statements may seem unrelated, and maybe they are.  My body doesn’t interfere with the way I do my job.  Granted, if I were a little taller and my belly a little bigger, I might have to make sure my stomach didn’t skew the results when I weigh produce or food from the salad bar, but by and large (ha), besides distracting customers with my glorious cleavage, this body doesn’t get in my way at work.

My grocery store job (one of the two jobs I have at the moment), is not the stuff of my childhood dreams…I didn’t wake up one morning and realize that my life would be incomplete if I never memorized 64 produce codes. But it (mostly) pays the bills, and it’s certainly not the worst part-time job I’ve ever had (being drowned by a three-year-old in a YMCA pool comes to mind…). It’s also kind of fun. I really like a lot of the people I work with, I enjoy interacting with the customers, I save up a few good stories every day, and most of all, I get to talk about one of my favorite things in the whole world: food.

Just like one of my favorite things about working at a public library was getting to comment on the books people were checking out and recommending new books for them to read, I really like asking people about the food they’re buying. If it’s something that I’ve been curious about but haven’t gotten around to trying yet, I ask them if they like it. If it’s something that I love, I say so. It’s GREAT! It’s the most fun part of my job! More fun than flirting with my supervisor, way more fun than taking out the trash.

However.

I have noticed that some people seem to promote me in their minds when I start to talk about food. I am no longer Lowly Grocery Store Cashier. I am the FOOD POLICE. I am clearly judging them on the basis of what they are buying at the grocery store. I must think less of them for buying that delicious-looking salted caramel gelato. Or the (awesome) macaroni and cheese from the hot food bar. Or a big tub of guacamole. Forget that I am openly announcing how much I love each of these foods.  I must be judging them.  I’ve had customers smile guiltily, eyes downcast, when I commend them for buying a piece of tiramisu (which is truly glorious).  I have a couple of regular customers who proudly announced their plan to walk from home to the store every evening and only buy one vegetable, as a way to ‘eat better’ and thus, lose weight.  They had big grins on their faces as they gazed lovingly at their eggplant, looking up at me expectantly, waiting for me to congratulate them.  Because obviously, as a fellow fat person, I must want to lose weight too. Don’t fat people always want to lose weight?

Well, I don’t.  I have only recently begun to love this body, and I’m not willing to change anything about it right now. So, to my dear customers: eat what you want, and I’ll do the same.  And maybe if you’re nice, I’ll share.

note to someone who knows who they are: This blog is the best birthday present ever.  You are wonderful.

Published in: on June 10, 2009 at 7:06 pm  Comments (1)  

Happy Birthday!

Welcome, Gillis, to the blog of your dreams. We eagerly anticipate a torrent of sharp wit and insight, and hope that you will use this space well and will continue find your voice. We are so proud of you and love you very much.

Happy birthday, beautiful.

Love your homo husbands,

Ryan & Jordan

Published in: on May 25, 2009 at 4:14 pm  Comments (10)