Tomorrow is my cystoscopy. I'm terrified. Horror-movie terrified. I know I will be numbed up and that the procedure itself shouldn't hurt, but I'm still expecting pain afterwards. And I'm pretty sure (in that vulvodynia-erodes-optimism way) that it won't show anything abnormal, so I'm already frustrated on behalf of my future self, and I'm exhausted at having to show my poussie to people over and over again. And uhm, camera-up-urethra sounds way scarier than a spooky little girl. But maybe it's in the movie?
My mom's taking me, which will help a lot. It means I can space out if I need to. I'm also hoping maybe she'll make me a more sympathetic figure. Maybe I can get her to shed some tears. My doctor is a good listener, but I've only seen him once. Plenty of doctors have passed the first visit and then started sucking it up.
I've been mulling over this quote from Albert Camus's The Fall since I read it a few weeks ago:
I've heard of a man whose friend had been imprisoned and who slept on the floor of his room every night in order not to enjoy a comfort of which his friend had been deprived. Who, cher monsieur, will sleep on the floor for us? Whether I am capable of it myself?
After all this mulling I don't know where to start.
Really the quote says it all. Who will sleep on the floor for us? It's sort of absurd when applied to vulvodynia literally: who will wear a chip clip on their genitals for us? But a friend of mine has a pregnant sister who can't tolerate dairy or soy right now, and my friend is home this week avoiding both in order to experience what her sister is going through. In order to empathize through action.
When I go out with friends and they eat, they often say how guilty they feel eating in front of me. But only one of them -- the one in the above paragraph -- doesn't eat unless I also eat. And if you think about it, it is kind of funny: "I feel so bad eating in front of you!" ::munch munch munch::
But even though all these people claim to feel bad about eating in front of me, no one even flinches when they talk about sex in front of me. The food -- whatever. I didn't have a meal plan for some time in college and I'd sit in the dining hall without food (all honest and shit) as my friends ate. It's not like I can't eat at all; I'd just usually rather avoid the trouble of trying to eat at restaurants.
The sex, that really bothers me. I can't believe people talk about it so freely around me without any indication of remembering what I'm living with. The mere thought of vaginal sex freaks me out because it's so painful. I have to work hard to remember that it's an enjoyable thing when you're not in pain. Complaining about not having sex, saying how much they want to have sex, how they miss sex, how they have great sex, how they did it several times in a row, how they just have to have it -- what in the WORLD can I say in response to that? THERE IS NOTHING I can contribute about my own experience that wouldn't grind the conversation to a halt, so I sit there like an idiot and nod like I'm really happy or sad for them and wait for the subject to change.
As for the "sleeping on the floor" concept, no, I don't want my friends not to have sex. But you know, when you're smearing your gluteny food all over your face and guffawing about the sex you want or just had, you can't expect me to believe you when you say how much you care about my situation.
And I say I don't want anyone to sleep on the floor for me, but what I mean is I wouldn't want anyone to do it by my command. Really, OH I would dissolve into a Kubla Khan pleasure-dome river of tears if someone showed that kind of friendship to me. When my friend told me it was a given that she wouldn't eat without me (I hadn't figured it out yet), I was floored (haha) by her character. Whose discomfort have I ignored? When have I eaten when I shouldn't have?
It sicks me out to think that I might have done that to someone.
I will continue the passive-aggressive trail by writing about a friend who may or may not read this. He's historically one of my best friends but lately I've felt unsupported by him -- just with all the shit, I don't feel like he gets it. (I've already told him this so technically this isn't passive-aggression.) He told me how much he identifies with his penis -- in simpler, guy-like terms, but that's what he was saying. And I tried to explain to him that I'm basically living without a vagina/vulva (even clit), without all the sexuality I acquired as part of my identity, and he still insisted that his penis was the center of the universe and he'd rather die than lose it. More absent empathy. I just couldn't believe it.
And as I lie on my balcony drinking my abundance of hard cider, absorbing my abundance of sun, using my abundance of literateness, living my abundance of health (because it is an abundance), I am, despite the undertow, the picture of comfort. And knowing how I feel around people who don't get it, I don't want my abundances if others are living without. But what do I do, go homeless? Does the act of physical empathy matter if there are no witnesses?
I think my point is that almost no one will sleep on the floor for us because there is an extremely slim sliver of people capable of that kind of understanding AND that kind of discipline. Close friendship alone can't surmount the barrier. I just hope that after all my time with vulvodynia I get what it means to support someone and I never make anyone feel forgotten.