In the spirit of ‘picture worth a thousand words’, let me show you why I haven’t been typing anything longer than 140 characters this month.
It’s a form of excema called pompholyx or dishydrosis; it’s heat-triggered and has no cure. I’ve never had it this bad before. Please can I have autumn now?
(If you haven’t read part one, do that first.)
So by 2007 my base prescription had climbed to -14.50 in my left eye and -18 in my right. The best possible contact lens correction gave me roughly 20/40 vision in daylight, making me just barely eligible to drive.
A few years ago I had my own ‘you mean trees have leaves?!’ moment. Jak was thinking about LASIK surgery and I was researching potential side effects, one of which is that lights gain halos and a ‘starburst’ effect. And I’m reading these descriptions and thinking … yes? So? I started grilling Jak about exactly what lights-in-the-dark look like to him, and I eventually work out that oh, once again, I’M NOT NORMAL.
I’ve never liked driving at night, because I can’t read street signs in the dark. Which means I get lost a lot. Discovering that people with vision like mine are advised never to drive at night was alarming … and a problem in Seattle, where for about six weeks in midwinter the sun sets before 4:30p. This makes commuting without transit or carpool options rather dangerous for me between October and March.
As of yesterday my left eye measured -15.75, for a 1.25 diopter change in roughly two years. My right eye … well, you know those big ‘glasses’ on a metal arm that optometrists use to test different lens powers? I learned that they top out at -19 diopters. At -19 I was seeing a vague grey tint to the fuzzy white square, not even distinct blobs for the letters.
Let me pause for a moment and give all you non-pathological-myopes a bit of context. You know that big letter E on the eye chart? Without my contacts, not only can I not read the E, I can’t even tell that there’s anything on the screen. And that’s with my ‘good’ eye, the -15 one. If -10 diopters is ‘you mean trees have leaves?’ eyesight, -19 is more like ‘trees? what trees?’
Okay, I exaggerate a little. I can figure out if there’s a tree in front of me, as long as the trunk is a different color from its surroundings. Most of what I see, unaided, is color and motion; beyond that it’s all about extrapolating from prior experience.
Anyway, the next step was to put a contact lens of a known prescription — in this case -10 diopters — into my right eye and measure from that. Sounds simple, but. It’s a soft lens, and since I am not a soft-lens-wearer, the optometrist (not the same one as two years ago, but a younger woman with an office nearer my home) planned to handle the insertion and removal herself.
I’ve been sticking my own fingers in my eyes, like I said, since I was seven years old. No problem there. But other people’s fingers trigger my PTSD. I don’t really know why; it’s not like pokes in the eye were a particular component of my childhood trauma, but somehow, on a level I cannot control, ‘foreign-controlled object approaching my eye’ gets interpreted as ‘utmost threat to my safety’ and all bets are off.
This is only the second time I’ve had someone try to put a contact lens on me. The first time was around fifteen years ago, when I was much closer to the original trauma, and the optometrist was far less gentle. That time I blacked out for some unknown number of seconds; I remember actually backing away across the room, and a lot of uncontrolled bawling.
This time I at least knew what to expect, and I threw everything I had at controlling my reaction. Which meant I managed to stay in the chair, and not strike out at the nice doctor, and emit no more tears than could perhaps be physically explained.
I could not, no matter how hard I tried, keep from flinching away every time she got to my eye. I apologized and apologized and gripped the arms of the chair and clenched my jaw and … jerked my head. And apologized some more.
When she did eventually succeed, we ran into the next snag: with the lens in, my right eye tested out at about -14 diopters. Something was amiss. So now the contact had to come out again.
Same thing but worse, because taking a lens out requires a longer period of contact (not a pun!) with my eye than putting one in. She was as patient and kind as I can imagine anyone being, but I couldn’t help my flinching. After three or four quick successive attempts I’d have to ask her to back off for a minute while I closed my eyes and breathed, trying to shove the panic back down. Then I’d brace myself while she tried again.
If I’d been less panicked I would have been mortified; I babbled a constant stream of I’m-sorries as it was. This, too, was a little too much like my younger years for comfort.
Double-checking against the naked eye confirmed that I was well over the -19 diopter mark. The doctor explained that the layer of liquid between the lens and the eyeball can alter the refraction, though she was clearly surprised by how much of a difference it made. (Earlier I had noted her Doctor of Optometry certificate, dated 2005. Based on her reaction, I’m pretty sure this was the first time she’d had someone in the chair who surpassed the limits of the available equipment.)
Unfortunately, this meant we had to get the -10 lens back in. And out again. You can perhaps imagine my dismay.
This time around I convinced her to let me try. Though soft lenses are significantly bigger than the ones I’m used to, I was able to insert it on only the second pass. Getting it out was not so easy. At the moment, the nails on my right hand are about half a centimeter long, so my attempts at pinching the lens off left me scratching my own eyeball.
Note to self: in future, trim fingernails short before optometry appointments.
Before we were done her patience was visibly thinning and I had run out of creative ways to apologize. I’ll spare you the rest of the trauma and cut to the result: My right eye is now officially off the charts. The optometrist guesses it’s in the neighborhood of -20, but it’s impossible to measure with standard instruments.
Worse is that it’s deteriorated by at least 1.5 and perhaps 2.0 diopters in two years. Disturbingly, my actual contact lens prescription is holding more or less steady, not because my eyes aren’t getting worse, but because increasing the lens power doesn’t produce noticeably better vision. Following this logically suggests that my corrected sight can only get worse from here, not better.
On the up side, the doctor reports healthy eyes otherwise. I used to take this for granted; now that I understand how much my risk factor is increased above the norm (for things like cataracts, macular degeneration, and retinal detachment), I count it a specific blessing.
My eyes and my hands are the two things I don’t know how to live without. I’ve had a long glimpse of what it’s like to lose the use of my legs; it’s harsh but I think I could adapt, given time. Deafness would be half a blessing by comparison. But I need to see, I need it for everything I am that’s worth anything at all.
I would beg someone not to take that away from me, if I thought there were anyone to ask.
Today’s adventure was a trip to the optometrist. You may be tempted to snort, but trust me, it’s a great deal more harrowing than it sounds.
First, a bit of history:
I’ve known my eyes were unusually bad since I was seven years old. I got my first glasses in kindergarten, a social stigma that was seared into my five-year-old brain. I don’t remember anything in particular about the next couple of years, but the story my parents always told was that my eyes were changing too rapidly; I needed a new prescription every three months. When I was seven, the optometrist convinced my parents to put me into hard contact lenses (the original, non-permeable kind), on the theory that the rigid lens would help my eyeball hold its shape. It wouldn’t stop the development of myopia, but he said it would slow things down.
I don’t know how well this worked; I was only a kid, and not following the details closely or with much comprehension. I do know that it was always expected that my eyes would stop deteriorating when I ’stopped growing’. I suppose that’s how it happened with my parents, and how it works with most people.
My father was extremely myopic as well, though amazingly no one caught on to this until he was in high school. (I don’t know what age exactly, but I had two old photos of him; in the senior photo he had glasses but in the sophomore photo he did not.) I remember two stories he told about getting glasses. One was how he was surprised to discover that trees had leaves, ones that people could actually see! He’d thought everyone saw the same green blobs on brown sticks that he did.
The other was about playing tennis. He was on the tennis team at his high school, and I gather he was quite good at the game. However, once he got glasses he couldn’t hit the ball for anything … because he kept being distracted by being able to actually see it. Apparently up until that point he’d been reacting based on sound alone. He had to completely retrain himself to play tennis based on sight.
My father had glasses like the proverbial coke-bottle-bottoms. He had a deep permanent groove across the bridge of his nose from years of bearing the weight of them. His eyes were large and brown, but hardly ever visible — behind their lenses they were smaller than dried pinto beans.
Now, my father’s prescription topped out at around -10 diopters, where it stayed for his entire adult life until his forties, when presbyopia dropped him back into the -9s. I passed that mark — in high school, I think, or maybe college — and kept right on going.
All the way through my twenties I kept waiting for the promised plateau, where my prescription would level out. Didn’t happen. I started to wonder if maybe there was some predetermined level of myopia I was destined to reach, and wearing hard lenses all my life had slowed down the journey without changing the destination.
I tended to only go to the optometrist on the rare occasions when I had vision insurance to pick up part of the cost. So about two years ago, when I found a new doctor, it had been something like five or six years since my last exam. I had managed to maintain the same pair of contacts for all that time, without loss or breakage (though not, as it turns out, without a large number of scratches).
I picked an office near my then-job, based on a referral from my then-boss. This optometrist was an older guy, in the business 25 or 30 years (I forget), and he’d only seen a handful of people in all that time with myopia as bad as mine. ‘Pathological’ myopia, he called it, which I thought was darkly funny. That’s me all over, you know? I can’t just be plain old myopic, I have to be pathologically myopic.
But I brought that phrase home and presented it to the Internet, and a number of things became clear. Pathological or ‘degenerative myopia’ never stops. The eyes just get longer and more out-of-whack forever — or until the strain on the whole system causes the retina to detach altogether. Boom, just like that, you’re blind.
I’m a fucking graphic designer, I make my living with my sight. You can imagine how much this news thrilled me.
Having an unrestricted public venue for one’s personal thoughts is a dangerous thing, for so many reasons. Right now I’m in danger of whining about my many physical ailments like an old woman. Expansively, and at great length. And who wants to hear that?
Twitter is safer; 140 characters of whining is more forgivable.
I did not expect my appointment with the orthopedist today — my first in well over a year — to end in minor surgery, but I think I’m glad it did.
The tibial tubercal transfer surgery that I had in the fall of 2007 left me with two long titanium screws through my leg bone below the knee, one of which has been incrementally extracting itself right out the front of my leg. I haven’t been able to kneel since the surgery, which is frustrating on top of my other problems, and makes for some very dirty floors. Worse is the fact that even a minor tap against the skin-covered metal sends me into paroxysms of pain, and in my chronic clumsiness I usually manage to slam it into something two or three times a day.
Now that two-inch screw is sitting here in an envelope. Jak, whom I’d dragged with me to the doctor, made some joke about going out for coffee during the extraction so he didn’t have to hear me scream.
This, incidentally, was over a hastily-procured pomegranate martini at a nearby restaurant. We had just under an hour between my original appointment and the impromptu screw-removal — not enough time to fill a Vicodin prescription, so I opted for ‘vodkadin’ instead.
I glared at him for even joking about abandoning me, and insisted that I would not either scream. I’ve endured a great deal of pain in my life and had high confidence in my teeth-gritting abilities.
I was wrong. My shriek of “SHIT!” reverberated throughout the office, and I belatedly understood why they wanted this to be the last appointment of the day.
Still, it was over relatively quickly — perhaps five minutes, all told. The doctor estimated I’d just saved three thousand dollars over an operating room procedure with general anesthetic, so I figure it was worth it.
We’ll see how complacent I am later, when the local anesthetic wears off …
Chronicling an event as it happened is fairly straightforward. Explaining a concept — one incompletely understood by the writer and certainly guaranteed to be foreign to the readers — is another thing entirely. I put the blank entry up on the archive site six days ago as a spur to myself because I thought I was almost finished, but that turned out to be wildly optimistic. I have wrestled with this for over a week now, and it’s become one of the most difficult pieces I’ve ever written.
I always wanted to be easygoing about sex. Not wantonly promiscuous — sex with strangers holds no appeal for me. But I wanted to be the sort of person who could sleep with a good friend just for the fun of it, without a lot of angst and bother.
I tried hard to become that person. For eight years, I tried. I thought I’d made a lot of progress.
I was so wrong.
Sex hurts.
I expected it to, the first time; I gritted my teeth through the pain and endured. I just wanted to get the difficult part over with and move on to something better. The second time I approached it with eager happy anticipation.
It hurt even worse than the first time. I was shocked and then crushed; I couldn’t bear it, and I made him stop. I didn’t have sex again for more than two years. I wasn’t seeing anyone I was in love with (my first partner lived in another state and was just visiting), and it just wasn’t worth it for anything less.
During that time I took two different sexuality courses in college and did a lot of reading on my own. By the time I was ready to try again, I suspected that I must have a mild form of vaginismus — which is a psychological, rather than physical, condition. I say ‘mild’ because some women apparently can’t even insert a tampon without pain, and my difficulty did not extend so far. Only penis-sized objects caused me any problem: the larger the penis, the more it hurt. (Size does matter, but not in the way locker-room conversation would lead you to expect.)
So I taught myself how to consciously relax the vaginal muscles, which definitely lessened the pain. But even when I was at my most relaxed, it would still hurt. A gynecologist told me that I had a ‘tipped’ uterus, which essentially means it’s in there backwards, and that this might cause pain during intercourse. A couple of years ago I read some case studies on a medical web site that sounded like mine, corroborating my suspicion that my remaining difficulty was physical rather than mental.
Only once did I ever have penetrative sex without pain; I remember it clearly, because I was so astonished. This was something over five years ago; my sweetie at the time was a guy named S, and I loved him very much. We were also having a lot of sex. And once it simply … didn’t hurt. Nothing was obviously different about that occasion. I briefly hoped that maybe heavy repetition had stretched things out a bit, and it would be easier thereafter.
No such luck. The very next time (later that same day), it hurt just as much as ever. Painlessness appeared to be an unrepeatable fluke.
If sex hurts, why bother? Well, because I crave love and companionship and intimacy, and people who are offering those things generally want sex too. If I loved someone, I was generally willing to make that trade; after all, part of loving them was wanting to do things to make them happy.
There was a danger, though. I was never raped as a child, but the physical abuse was severe, and as a result I have real trouble with anything that involves having to remain still while someone deliberately hurts me. This makes both dental work and penetrative sex more than a little tricky. If I’m not in the right frame of mind and very good control … it can be a horrible experience.
So I was walking a fine line. Some days I just couldn’t take the pain. I was careful to always and only offer sex in a spirit of generosity, never when I would a) freak out or b) resent my partner for it later.
It was just my luck that I kept ending up with guys whose libidos were cranked up to eleven. I’ve gotten to be pretty good in bed, I think; my partners have invariably been enthusiastic about the quality of the sex, even though in every relationship that wasn’t long-distance I would eventually receive complaints about the quantity. I felt bad for denying them as much as I did, so very early in my sexual career I determined to overcome my distaste for fellatio. I turned out to have a talent for it, which helped — positive feedback is a good incentive. But I never learned to like it for my own sake.
I got used to it, though. I got used to everything. Knowing that this was as good as it was going to get, I tried to convince myself that I didn’t mind too much. I very nearly succeeded.
Some of you might guess that all this means that I never had an orgasm before, but you’d be wrong. It’s far more subtle than that. I’ve been having orgasms right along, both by myself and with other people. Not from penetration, either then or now — but oral sex has usually been pretty darn successful.
Nor have I slept with a lot of insensitive losers. I had penetrative sex with <counts on fingers> eight different men, prior to G. Those eight, with one short-lived exception, were all sensitive enough to care about both my pain and my pleasure in bed.
Thing is, I didn’t really care very much. Even when I had an orgasm, it was usually more for my partner’s benefit than my own. These sensitive men felt bad if I didn’t seem to get something out of sex, even when I told them I’d genuinely rather have a back massage.
It’s not that G is inherently better in bed than everyone else. It’s just that we happen to match.
Sex with G hurt too, but it was from the very beginning more fun. It’s difficult to quantify why, exactly, because the obvious details weren’t different.
It’s relatively easy to explain that you don’t like sex because it hurts. It’s the next part that causes me the most trouble: explaining that I don’t like sex because … I don’t like sex.
Over and above the pain, sex for me has always incorporated a persistent feeling of wrongness. Always and forever with everyone without fail, every sexual experience felt … wrong, in a way that I don’t know how to adequately describe. Unpleasant, even when I wasn’t actually hurting.
Well, it was fairly obvious that most people don’t feel that way about sex; clearly this was some problem of mine. Since the level of wrongness varied, I tried to compromise. When the feeling was very strong, I avoided becoming sexual with that person. When it was very mild, I would just do my best to ignore it and soldier on anyway, hoping that eventually it would get better.
It never did.
The wrongness was different with each person, always made up of a random assortment of things. For example, with a couple of people I found I couldn’t watch them have an orgasm, because they made faces that I actually found terrifying. Sometimes it was just something about them physically that I found less than attractive, which during sexual intimacy could expand into full-blown revulsion.
I said before that I wanted to be the sort of person who could sleep with a good friend just for the fun of it. Well, the corollary to that is that I wanted to be the sort of person who was attracted to people because they were good people rather than for superficial reasons of physical appearance.
I tried that, with the best of intentions, and discovered that sleeping with someone I found wholly unattractive physically didn’t work very well at all. So I fell back and regrouped, attempting to at least remain open to the broadest possible range of attractiveness in people. I picked people that I thought were physically attractive in some ways, as well as mentally and emotionally attractive, and tried to focus on those and ignore the unattractive parts.
I’ve never been thoroughly attracted to any of my lovers, before G. I didn’t even realize that I could be that attracted; I thought I was just fundamentally sort of asexual. But I guess it’s possible after all … just extraordinarily rare.
I’m ashamed of the fact that appearance matters so much. I don’t think I can help it, though. I’ve tried for years, and it hasn’t gotten me anywhere.
A friend of a friend (with whom I’ve corresponded but whom I’ve never met) came up with a metaphor that I liked enough to appropriate and adapt for my own use:
Imagine that you grew up in a room with walls so dirty they were grey. The entire sum of your experience with walls has been dreary and dark, yet all your life you’ve heard other people talk about white walls and how wonderful they were.
So when you get to be an adult, you start scrubbing away at your walls. It’s a lot of work, but slowly the grime begins to slough away. You scrub for years, exhausted but relentlessly determined, until one day you stand in the middle of your room and look around at your pretty, shining white walls and are proud.
A couple of years pass, and someone gives you a can of white paint. With the first stroke of the brush you see that what you’d been calling white was really just a dingy cream, that here is the real white — beautiful and compelling, stark and celebratory, sparkly and intense. And it’s wonderful.
Except now you know that all these years you’ve been missing out on the simple, profound experience of white. It’s painful enough to contemplate all those years of effort and understand that the best you could manage was dingy cream. But the true anguish comes when you realize that you do not have a limitless supply of this sparkly white paint; that when that one can runs out you will sit and stare at the otherwise dingy walls and feel like crying.
That’s what sex has been like for me. I know now what is possible; I can’t settle for less.
I’ve always hated chocolate. The mere smell of it often makes me nauseous. When I was in kindergarten, the other kids made fun of me for always getting white milk in the lunch line instead of chocolate. So one day, I decided I was going to get chocolate milk and drink it just like everyone else.
I swallowed maybe half the carton before I gagged and vomited all over the lunchroom table.
I’d dearly love to be able to point at something in my past and say there, that little bit of Clockwork Orange aversion therapy, that’s why sex is such a problem for me. The physical abuse of my childhood obviously plays a part, and some of the mental abuse was sexual in nature and has left its mark.
But that doesn’t account for all of it. The truth is that I don’t know why I’m this way, any more than I know why I don’t like chocolate. Which means that I can’t control it any better than that, either. I can’t truly change it.
Of course, when you’re grown up, nobody really cares whether you like chocolate or not. Sure, people tend to think it’s odd; I get teased a little, but it’s not such a big deal. But not liking sex? That’s serious; that makes me a real freak.
The difference is, no one will ever break up with me because I’m not eating enough chocolate.
Here’s the funny thing. Once, when I was a much older child, my parents took me to a party (probably some business thing of my father’s) where I wandered around by myself and ended up eating a piece of German chocolate cake. I can’t remember why I tried it — maybe I didn’t know that it was chocolate, or maybe I just felt embarrassed, or brave.
I liked it. It was really good.
I thought perhaps I’d start liking chocolate after that, but no, I hated it as much as ever. I’ve even tried other German chocolate cakes, and didn’t like them (although they do tend to be far less objectionable than darker, richer chocolates). I don’t know why that one was different. I’ve never been able to repeat the experience.
For whatever reason, G is my German chocolate cake. This is not a transferable phenomenon. I don’t suddenly like sex with anyone else better — on the contrary, the dislike and the wrongness that I’ve been suppressing all these years has come surging to the fore, demanding to be recognized.
It’s been almost exactly a year since G and I first slept together. I’ve attempted to be sexual with several people during that time, and failed miserably in each instance. (I did actually go ahead and have sex with B a couple of times while we were still living together, after G’s visit, but it made me literally nauseous. Since then I’ve backed off with everyone else before it got to the point of actual illness.)
The only person I know who hasn’t triggered my sense of wrongness to some degree is H. Whether that would continue to hold true if the relationship turned more than obliquely sexual, I don’t know; I haven’t had the opportunity to find out.
I confess that I am more and more tempted to hope lately that maybe I’m just much farther along the gay-straight continuum than I previously thought. I wouldn’t feel freakish about being attracted mostly to women rather than men. But honestly, I think that’s too easy an answer.
I think I’m just wired strangely, for reasons I may never know, or perhaps no reason at all. And — despite what it will cost me — I can’t pretend to be normal anymore.
