Saturday, March 26, 2011

I Must Be Insane

Oh Wait! I AM!

Well, I've been thinking a lot about this idea for over a year. It may be some crazy dream that won't happen, or else maybe I can end up contributing to the world, I don't know. I don't pretend that this is going to necessarily work out. But it's something I feel that I have to do.

I'm tired of going into the health section of bookstores and finding nothing about Narcolepsy or what it's like to experience this illness. I'm tired of keeping my feelings and thoughts in a small corner of the internet where only a small audience can find them, afraid to give this link to too many people I actually know. I'm also tired of "not contributing financially" to my family and getting crap for it. And so, for better or worse, I'm going to attempt something outrageous. I'm going to write a book.

I'm under no illusions about instant fame (HA) or even my slim chances of ever finding someone to publish such a thing. I make no promises, except that I'm going to write this thing and if no one else will have it, at the very least I can put it online somewhere and link you, my mysteriously interested small audience.

I have hope that I can get something interesting down because this has been stewing in the back of my mind for a year, and suddenly it's taken a sort of feverish hold on me. So there it is: my new project. A book about Narcolepsy.

Who the heck knows why my brain has grabbed onto this. All I know is that I know better than to ask. I'll just go with it, and see what happens.

Thursday, March 24, 2011

The Gender Therapist Adventure

A couple of entries ago, I explained how my girlfriend discovered the root cause of her depression problems (being trans) and will now be referred to using male pronouns or the initial J. Well, we've talked about it a lot, thought a lot, discussed and considered what to do about it. The whole time, he's been experimenting with wearing male clothing when not at work and so far seems to be doing a lot better. We decided, having read a lot of advice online, that maybe we should look for a gender therapist.

Various trans-oriented resource sites stress the importance of getting a therapist who specifically specializes in gender issues. Apparently, if you get one who doesn't, they're a lot less likely to understand your life issues if you're a transperson. Depression and body issues for transpeople are very different than most therapists are trained to deal with. So after finding this type of advice all over the internet, we decided that if we wanted to work on J's depression with professional help, a gender therapist was the way to go.

So we searched and (unsurprisingly) found that there aren't any in Iowa and the closest one that looked promising is in the Twin Cities, three and a half hours away. And so we made an appointment two weeks ago, J took off work, and we figured that even if it was a disaster or unhelpful, at least we would be near the closest Whole Foods for an afternoon. Yesterday arrived and we threw the dogs in the car in the morning, made sure our cats had extra food, grabbed some Larabars and started driving.

The weather was pretty terrible. It was windy and snow-raining and foggy and the roads were really wet. As we got farther north, the mix turned into snow, which started to show up piled everywhere. Our appointment had been rescheduled for later in the day, 3 PM, and we were glad because it took awhile to get there and the roads in St. Paul were pretty bad. To top it off, we kept getting lost because our maps weren't as helpful as we had hoped. We ate at Whole Foods (sushi!) and rushed through the store to pick up a few things (gluten-free PIE!), running out of time.

We got lost again between Whole Foods and the therapist's office, but we made it there at exactly 3. We rushed upstairs. The office was dark- not a good sign. It was only then when we looked at our messages that we found out that the therapist had called us hours before to tell us she couldn't make it. She was snowed in at her house. We were both pretty frustrated and annoyed. I mean, if we could make it to her office from three hours away and navigate the snowy streets in my dinky little Saturn (which doesn't even have anti-lock brakes), surely she could get there that late in the day from half an hour away.

So we left her a message back and headed back to my car, feeling disappointed. J is probably going to have job interviews that will require him to take days off soon, so we can't really do it again. This therapist won't take appointments at all on the weekend, and we don't really want drive that far again anyway, especially when she already didn't show up once. To console ourselves, we backtracked to a Borders we saw while we were lost, which was plastered with Store Closing sale signs, and went on a cheap book spree. Then the dogs were looking bored, so we took them to a Petsmart and they thought that was pretty interesting. We were feeling like at least the trip hadn't been a total waste.

We had picked up a few fliers in the dark and empty (but mysteriously unlocked) therapist's office. One of them was advertising a trans support group that happened to be meeting on Wednesday evenings. We decided to go, since we had nothing to lose. I mean, our main objective in going to the therapist was to talk to somebody about this. Someone who knew about it, understood, and that was detached from our family, and might know more about it than we do now. We figured we should at least try it out.

After getting lost two more times, getting stuck in the snow and having my narcoleptic self at the wheel while we extracted our car, which resulted in me driving in deep and slushy snow for a few blocks around lots of stuck parked cars, we found the right building. There were only two other people there- apparently a slow night- but they were very friendly and sympathetic. We felt so much better after talking to them for awhile and we got tons of really good information. The best thing about it was just feeling less alone. Being trans and dealing with trans problems is so incredibly isolating. Even when people are supportive, they can't quite understand if they're too far removed from these experiences, and most of the people we know we're a bit afraid to tell because we don't know how they will react. We walked out of there feeling so much better, with lots of fliers and resources and access to an entire community of people in The Cities, and even a binder to try out. My fiance had the biggest smile on his face all the way home.

Night fell as we found our way back to 35. The drive home was long, but we spent the whole way talking and singing and laughing, with our dogs asleep in the back.

Friday, March 18, 2011

Bring On the Ice Cream

Okay, so I know there's some pretty weird stuff I've been blogging about lately, related to narcolepsy and not. But this latest suspicion of mine really takes the (GF and soy-free) cake.

So we all grew up knowing two things about ice cream: it's delicious, and it's bad for you. I mean, frozen cream with massive amounts of sugar in it seems to be, according to common sense, bad for you, right? I mean, it's basically sugary fat. Can you get more unhealthy, really? Or so I thought...

For four years or so I was quite underweight, thanks to Xyrem and a complete lack of interest in cooking (a killer when you're on a special diet). My lowest weight was 92 lbs, and though I am a small person, I was around 20 lbs too light. I could feel it. My bones were sticking out and I was cold all the time because I had no fat whatsoever. I felt physically weak. I had a hard time finding small enough bras for awhile, and I was wearing size 0 jeans (which were a little loose). Many people say they'd kill for that, but I felt horrible. I felt so unhealthy. I had no energy, which, when you already have narcolepsy to contend with, basically made life impossible. I felt like one of those skeletons that show up all the time in my dreams, crumpled up on the couch.

Finally I had a falling out with my neurologist because I was sick of being a stick figure, and the Xyrem had mostly stopped getting me sleep anyway. So I stopped taking it and slowly started to recover the weight I needed. I immediately felt better, learned how to cook (what a difference an appetite makes), and started eating a ton of really healthy, homemade food every day. I'm sure the story would have been different if I'd started eating junk food or even GF frozen dinners like I had before, but on all the veggies I gained weight back slowly and flesh started showing up in areas where it was needed. A year later, you couldn't see my hip bones anymore and I actually had curves again. Soon after, I leveled out at around 107 lbs and felt so much healthier and stronger. Even so, I felt cold a lot of the time and like I needed a little bit more meat on my bones. I mean, winter in Iowa really kind of requires extra padding.

Around that time I started noticing how often I was craving cheese. I've always really liked cheese, but I had started putting it on everything. My fiance didn't mind; he loves cheese too, the more the better. Since our diet contains mostly vegetables, fruit and occasionally fish or chicken, I kind of figured I was craving dairy since it's got a lot of protein in it. I didn't worry too much about it and kept piling on the cheese. And then I started craving cheese and ice cream. I hadn't had ice cream in over a year; I tend to avoid sugar products because once you stop eating them, small amounts make you anxious and kind of crazy. But this craving was pretty over the top. So I got a little carton of Haagen-Dazs to see how it went. I like that brand because it's pure ice cream, none of this modified-food-starch-whatever-chemicals nonsense, and you can tell because it tastes insanely good, like real food. Plus a lot of the flavors are gluten-free, and actually gluten-free- no contamination at all. The same goes for soy. Some flavors have it, but only where necessary, and as long as I read to label I haven't had a problem.

So I thought, okay, it's just for a treat this week. But the craving kept up, and suddenly I was gaining weight again. I went from 107 to 113 in a week and the only difference was the ice cream. Alarmed, I stopped buying it. I've heard it's easy to get overweight if you have narcolepsy, so I'm wary. After a week without any in the freezer, I dropped back down to 107, and realized I was suddenly cold all the time again. Okay... was my body telling me that ice cream is good for it? That it needed ice cream to round out my healthy diet? o.O To have enough body heat?

So this turns my idea of health food upside own. I find myself thinking, maybe it isn't that some foods are always bad or always good for you. Maybe being healthy is about paying attention to what your particular body needs, watching how you feel. Maybe it isn't all so clear-cut. The rest of life isn't, so why would food be? Our bodies are amazing, beautifully constructed, and complex. Maybe you can't just rely on other people's advice, even that of the experts. Maybe you have to listen. The more I listen to my body, the more interesting things I discover.

I don't know what's weirder- my body legitimately needing ice cream to maintain the proper weight or the irony of something cold ultimately making me warmer. Now I keep some in the freezer all the time and pay attention to my intuition. If my body says it wants ice cream, I eat some and feel better. If I feel I don't need it then I avoid it. Now that the weather is slowly warming up I've been needing it less. I don't have to think it through. I just have to pay attention.

Wednesday, March 9, 2011


I stopped writing, not because there hasn't been lot on my mind or because narcolepsy is leaving me alone, but rather because there's been a shift of my priorities for the last month or so. There's nothing like someone you love going through a lot to take you away from thinking about your own problems.

I'm not sure if I've mentioned on here that my girlfriend, who I'm going to refer to as J, has had depression problems for most of her life. Since I moved in with her a year ago I've been working on helping her figure out the root causes of it, since I've also had it most of my life and have found my own fairly effective ways of dealing with it. Basically I'm there for her to talk to about anything, and I bother J to talk and write through things she's feeling. So far it's seemed to open up a new world of thinking about herself for her and she's discovered many things about her identity since we started. The latest of these discoveries surprised us both and turned our mental worlds upside down, while at the same time not changing a single thing about J or our relationship.

It started a month ago when we had been talking about sexuality. It's a weird issue for both of us. On the surface we are defined as a lesbian couple, but neither of us feels comfortable calling us that. Our gender roles are very clear-cut- she brings home the bacon and I cook and clean. It's almost maniacally traditional, which seems weird because neither of us have very traditional value systems. We had been talking about it on the weekend, and then J took our big dog for a walk, and when she came back she had this sort of shell-shocked expression on her face. When I asked her what it was, she said simply, "I think... I'm a dude."

We stood there and looked at each other. I felt like I was seeing her for the first time as a whole cascade of ideas fell into place. The transformation in my head went something like this:

unfounded depression --> gender dysphoria
gay couple --> straight couple
masculine "quirks" --> male personality
weird about clothing --> accidentally cross-dressing
girlyness --> overcompensating
bisexual --> wants to have male body + is straight
uncomfortable at work --> forced to playact being a woman
hates her body for some unknown reason --> IN THE WRONG BODY
Does this change how I feel about her? --> NO.

And then I really looked at her face, imagined her with short hair and told her I thought that she could pass as male if she wanted to. And started laughing and gave her a hug. I was/am so proud of her for figuring out the missing piece. She says that the realization for her came with a massive sense of relief.

We were both brain-crashed for the next week processing this. It wasn't that anything was different between us, or even about J. We just kept thinking of more ways in which it explains everything that either of us have been wondering about her. We're still coming up with things and it's been a month.

We found a great transsexual resources forum, Laura's Playground, and it's been a really good source of information since neither of us knew much about being trans before this. We decided to go look for clothes and got a bunch of things from the men's department for J. I've gone shopping with her for women's clothing a lot, and she was always dissatisfied while trying things on. She might find one thing that she could stand (and that fit well) out of ten things. The first time J tried on a guy's flannel shirt, she was smiling, it fit her, and it seemed essentially her somehow. I also cut her very long hair into a short and fairly androngynous style and it looked and felt much better to her.

At this point I'm going to switch pronouns on you, because saying "she" and "her" is driving me nuts. But I wanted to make it clear that I'm still engaged to my soulmate, the same one as before, and that I haven't switched people on you, it's just that my "girl" became my "man". Though "became" isn't the right word at all.

J has a gender therapist appointment for two weeks from today, and I'm going with him to provide moral support. I've been his unofficial therapist over the last year, and I seem to have done a reasonable job, but transpeople have unique challenges to face internally and externally and I feel out of my depth. So we'll see how that goes. J says he doesn't plan to start hormone treatment or get surgery, but if he changes his mind I'm supportive. I figure it's my job as the woman here to make sure he's taken care of. :) I've been doing that all along anyway... I think J's hoping they'll scan his brain to see if it's structurally almost male.

So the whole thing adds a new dimension to the interestingness of our life together. At least I'm not the only unusual one anymore. I don't know if I'd call us even though. It's hard to beat me, the hallucinating sleep contradiction, even with a man's brain in a female body. XD I'll just call us odd instead.