The end and also the beginning

I have more or less reached the end of Things What I Remember From High School.

To some extent that's not quite true.  I have scattered odd memories left, like the time a group of us avoided a pep rally in favor of a "club meeting" wherein we watched Dr. Who -- which I didn't know about at the time, but I remember The Scarf.  Or the time (technically junior high, and before my Star Trek obsession) a friend and I were teasing a mutual third friend about her devotion to The Hobbit and all things hobbity right down to their fuzzy feet, an incident I deeply regret -- not just because I came to adore hobbits myself, and all of Lord of the Rings, but because there is the sort of teasing that is friendly light-hearted poking between companions, and there is the sort of teasing that is mean-spirited and deeply painful, and we crossed from one to the other without noticing it.  To whatever credit it gives us, we did notice once we had pushed her to the point of crying, and we apologised desperately because we hadn't meant it to injure at all, and she did forgive us, but the harm had been done.

(If I knew whether or not she remembers this incident as much as I do -- or even at all -- I would write her an additional letter of apology, because I understand things so much better, and because I regret not just crossing the line but teasing her at all.  But I don't.)

I do also regret a moment when I could have stopped something that may have been more along the lines of mean-spirited teasing -- it was two fellow students at PROMYS teasing a third (possibly one of the counselors or junior counselors, so a few years older) about the sparseness of the beard that he was trying to grow.  I remember speaking up enough to say that that sort of mockery wasn't cool, but they said it was all in good fun and they were friends, and the boy agreed -- to my memory not the sort of enthusiastic agreement that would indicate that he truly didn't mind it, but the mumbled "yeah what they said" that he might have been using to avoid further retaliation from them --and I believed them (all of them, not just the possibly-victim) let it go.  But that is not as deep a regret as the first.

Luckily I do not remember being much in the way of a victim of any sort of bullying or harassment, beyond the junior high shenanigans I mentioned.  There may have been some that I was oblivious to, or have blocked out.  There definitely was earlier, in early elementary school -- I remember some name-based teasing, and some teasing based on how I responded to being teased, and I remember vividly that "Don't react and they'll get bored and move on" advice often given to the victims of such harassment is neither accurate -- bullies will as often escalate rather than finding a new target -- nor helpful, as it is extremely hard not to react emotionally.  And as you may notice, I have opinions on that subject.

But really, aside from the fact that I don't remember large chunks of it, my high school experience wasn't too bad.  I don't want to relive it, but it was survivable.

(Obviously)

The next phase of my life would be college -- kind of a default assumption for most of my life, especially given that both my parents had college degrees.  (It took me a very long time to realize there were people in the world, even in my community, that did not just automatically go to college right out of high school.)

I had my pick of a lot of places, but was limited to what had accessibility that I needed, given that I was planning on using a (motorised) wheelchair full time.  For example, most schools on the East Coast were a no-go; Princeton, for example, had a lot of old buildings with lots of steps and stairs, and while they would have been happy to provide me with accommodations, they couldn't really practically do very much, and large swaths of the campus would have been effectively off limits.  (Being me, I considered applying there just so I could turn them down, but then I got so annoyed with the application process that I didn't.)  Other places had decent physical accessibility but not much in the way of clueful/helpful administrative support for disabilities; still other places had good disability services but not so great campuses.

But I did pick a place -- Stanford, far enough from home that I wouldn't be constantly running into my mom's friends, close enough that I could come home for Thanksgiving and suchlike -- and started a new adventure.

But that's for next time.

(N.B. I don't know how much I will get written in the next week, but I will come back to -- and continue -- this blog, I promise.)

In which I talk about sex without talking about sex

Don't worry, there isn't any TMI here.  But this is a relevant part of my high school life.

Unlike the rest of the posts, it is built more on what I don't remember than on what I do.

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When I was very young, my understanding of sex and marriage and suchlike was this:

Girls grew up to marry boys (and at some point boys grew up enough that they didn't have icky boy cooties).  Boys grew up to marry girls.  Children happened somehow.  Kissing was what happened when your parents tucked you in at night or your grandmother came to visit, and was a peck on the cheek or forehead from a relative.

When I was a bit older, my understanding had evolved ... sort of.

Girls still grew up to marry boys.  Boys still grew up to marry girls.  There was a process called puberty that made the opposite sex attractive rather than cootie-ful.  People who were attracted to each other would kiss, often with open mouths (it did not occur to me that there was tongue involvement).  This was sometimes called "necking", which sounded more like something giraffes would do, and I would imagine people trying to twine their necks around each other.

(Did I mention the bit where, when I was very young, someone mentioned that if you had pierced ears, which I didn't, and then didn't wear earrings, "they would grow together" -- and that gave me a very odd visual of earlobes growing and extending to fuse together under the chin.  I partly blame the Girl Scout song "Do your ears hang low", which is of course a sanitized version of the probable original, but I also had a very weird concept sometimes of what bodies did or could do.)

I got the sex talk, but it confused me -- I didn't understand why anyone would have sex outside of marriage, because you needed to be married to have kids, and the purpose of sex was to make kids, so why would you even do it? and if you did it, why would a resulting pregnancy be a surprise?

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There are of course a few things missing from this worldview.  I was in some ways very sheltered, very naive.  It never occurred to me that sexual activity was pleasurable, and that there were reasons to do it that weren't limited to procreation.  And I didn't even have a concept of same-sex attraction, among other things, let alone a word for it.  (The not-fanfic I mentioned in my last entry was completely platonic.  And even when I did start writing sexually explicit fanfic and was writing sex between two males as often as sex between a male and a female, it took a long time to realize that the world in general differentiated between the two.)

During junior high and high school, I did notice that other students were putting a lot of focus on boyfriends or girlfriends (though again I didn't notice any same-sex pairing-offs that might have been happening), but I didn't feel the need for it myself.  At the time I assumed it was either the fact that I was too busy -- between the medical stuff going on, schoolwork that tended to be very rigorous since I had a lot of Advanced Placement classes (as well as college classes, math and physics, during my senior year), however much of swim team I was still involved in (I don't remember when I stopped), and so on, I just didn't have time for a relationship -- or the fact that I was younger than my peers by several years and therefore quite possibly a late bloomer.

But looking back, what I notice the most is that I had no interest in anything sexual.  Even kissing -- the sort that boyfriends and girlfriends did, not the sort that your grandmother gave you -- wasn't something I wanted.

Even in college, when surely I had made up any age gap from being a "late bloomer", I have no memories at all of sexual or physical attraction.  I did get crushes, yes; I did find myself in love; but more often than not, those were towards girls, not boys.  And it never had a physical component, being more about a fascination with the person than with their body.  In fact, the instances I can label as being in love?  All were with people I met online and had seen few if any pictures of.

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I have words now for the gaps in my experiences.  I have an understanding, as well as an acceptance -- that I am not broken, and that the "promises" I was given as a child (that I would grow up and find a man to marry) were just cultural norm and not absolute truth.

This is another time that I wish I had a time machine, or even just a way to talk to my younger self.  To enlighten her first of all that it is possible to be attracted to someone of the same sex (even if society doesn't always see it as normal or acceptable), because I think I might have had some crushes in high school that I was not aware of because I hadn't considered the possibility.  And to enlighten her second of all that asexuality is a thing, and that some people experience physical attraction and others do not.

(It is a little odd, even now, to be saying this.  I know that I identify as a pan-romantic asexual -- someone who does not experience much if any of a sex drive but can be romantically attracted to any gender -- but I do not often say it out loud.  This blog here is not quite out loud, but it is attached to my RL identity, and there are people who know me in person that might be reading it.  It is like I have two identities, my fannish online identity and my real life birth-name identity, and they overlap but are not the same.  My online identity is a lot freer about this sort of thing than my RL identity.)

(On the other hand, visibility is important.  And there may be someone who finds this blog one day and says: yes, that was also me, but I did not have a word for it and now I do.  Or someone who says: yes, that is me, and I always thought there was something wrong with me.)

(There is plenty that is "wrong" with me, but sexual identity is not one of those things.)

Fandom

Sometime in late Junior High or early High School, I discovered -- and fell deeply in love with -- Star Trek.  I was very much into science fiction in general, and also fantasy, especially when it came to books --

(and there was also a period where I got obsessed with Stephen King, which ended when I spent a few weeks being deeply terrified of my closet door being slightly open, and then six months terrified of random rabid dog attacks)

-- but TV-wise, Star Trek was my one true love.

At that point, there was only the original series (generally abbreviated TOS) and the next generation (generally abbreviated TNG), but I couldn't get enough of either.  TNG was easier to watch (and rewatch) because it was running on network tv every day; I remember that I wasn't allowed to watch it unless I had finished that day's homework, which made quite an incentive for finishing said homework.  (Some of those memories are particular to the year I took calculus.)  It got to the point where I had seen enough episodes enough times that, given a short clip -- sometimes as short as a single camera shot or a line of dialogue, sometimes a bit longer if it was just a stock shot of the Enterprise -- I could instantly name the title, season and episode number, and plot summary.  And could provide any two of those three pieces of information if given the third.

(I have since, quite recently in fact, rewatched TNG, and my knowledge has faded over time.  There were some episodes that I recognized, others that took a bit before it clicked, and still others that I don't remember having seen.  But it's been a while.)

I don't have memories of watching TOS episodes, but I must have, for two reasons.  One is that I had a strong obsession with Vulcans -- Spock in particular, and Saavik secondarily, though the Saavik of some of the book novelizations rather than the movies, but all things Vulcan -- and that would not have come from just TNG.  I apparently went through a phase where I claimed to be half-Vulcan; I remember wanting to be part Vulcan, but my mom remembers me being more adamant about it.  In retrospect, I think a lot of it was the emotional control.  High school is a turbulent time in general, physically and emotionally and socially, and beyond that I had medical uncertanties and tests and chemotherapy and then the diagnosis of a rare and untreatable condition, and I ... I don't remember being any more stressed than I would have considered normal, nor do I remember being depressed -- and in fact so many people kept asking me if I wanted to talk about what I was going through (no, not really) and reassuring me that it was all right to be angry (which I wasn't) or depressed (which I wasn't) that I sometimes felt like I was doing things wrong -- but I would not be surprised if the half-Vulcan thing was a way for me to escape some of the emotions that I wasn't aware I had and didn't really want to deal with.

Plus, they're just awesome.

The other reason is that ... well, let me back up, for the benefit of those reading this blog that are not in my head.  Within fandom (which is generally The Group Of People Who Like A Thing, and I will not at this time admit to the fact that it surprised me to realize that anybody else liked Star Trek at all, let alone enough for there to be a fandom purely devoted to Star Trek) there is the concept of fanfiction, or writing stories using the existing characters.  So, for example, one might write further adventures of the NCC-1701 crew, like another episode or one of the novelizations; or one might write about what Kirk and Spock do in their spare time; or whatever.  There are a lot of variations.

I was familiar with the novelizations, but the concept of fanfic had not occurred to me at all.  (I think partly because I didn't realize we were "allowed" to.  And there is a lot of legal kerfluffle over fanfic, especially when it comes to stuff involving money, but I won't get into that, and anyway, almost everyone agrees that writing fanfic is an acceptable pasttime.  And many people invent it on their own before they find fandom and find out that other people do it too.

I didn't write fanfic as such.  I wrote pseudo-fanfic.  It was sort of "fanfic with the serial numbers filed off", because it was basically fanfic with the names changed and a few odd details changed.  My Pern not-fanfic, for example, still involved dragonriders bonding to telepathic dragons, except the places they lived weren't called Weyrs and the characters were my own and the planet was not called Pern.  And I wrote a lot in that little universe, never full stories but kind of the word equivalent of doodles.  Same thing with the Redwall not-fanfic that I wrote, with their talking animals.

And one of the not-fanfic universes that I had was not only distinctly based off Star Trek, it was distinctly based off of TOS in particular.  Because there was a starship that went around exploring the galaxy and discovering new civilizations, and that starship always had a Kirk-equivalent captain who was handsome and charming and adventurous, and a Spock-equivalent first officer who was stoic and alien and generally dry and unemotional on the surface with deep reservoirs of stuff he never showed, and a Bones-equivalent doctor who was cranky and grouchy and gruffly protective of his crew, and the three were BFFs before BFF was a term.

The only difference was that in my version of the universe, the captain was disabled.

Not with what I had (although I do recall a story I wrote once where someone with my condition was applying to the not-Federation Academy), but with far better technology.  Because I figured that in a future where they can replicate food out of thin air and travel faster than light, they can damn well have better adaptive technology.  My favorite variations were a walking frame (with an exoskeleton that allowed the captain, in that version having a form of paralysis from an injury on an expedition, to walk perfectly normally, using a neural interface that bypassed the need for a joystick control, and without any awkward lurching) and a wheelchair that had both sit-to-stand capability (so that he could stand to greet alien dignitaries) and thruster technology (for going up stairs or across rocky terrain.)

The rant on Star Trek and disabilities will wait for another time, but I am in retrospect very proud of myself for having that variation, pleased that in my version of the universe it was possible to be both disabled and successful, and amused as all get-out at the implication that I saw Kirk and Spock and McCoy as an inseparable threesome (not in a sex sense, just in a friendship sense).

Late in high school I got access to email, and discovered Usenet and mailing lists.  The list I have the most memories of was vulcan-l, wherein I discovered I was not the only person thoroughly obsessed with Vulcans.  Usenet I remember less of, but again there was the feeling of "here are my people".  Because yes, my parents supported my interests, but I didn't really know anybody else that liked the same things, and all of a sudden there they were.

And then I went to college, and fandom stuff got even more fun and exciting.  (Plus, the internet became more internetty.)  But there are still a few more things left about high school.

I will, though, admit that while I don't know that I have my Spock shirt still (because it no longer fits, alas), I do still somewhere have the giant Spock clock that hung on my walls for several years.

And I still think Vulcans are awesome.

Pets

Growing up, I didn't have much in the way of pets.  We had parakeets (or maybe budgies, I don't quite remember) when I was very small, but nothing to replace them, and I don't really remember much about them aside from the annoyance of having to change out the newspaper at the bottom of the cage.

My sister ended up being allergic to pretty much anything with fur, hence the lack of pets.  There were probably other reasons too, but that was the biggest one.

I remember house-sitting for our neighbor across the street, who had four (or so) cats.  I would sometimes (with their permission) take a book over and just hang out over there, and one of the cats was this sweet snuggly little girl that liked to lie with me and purr.

I remember wanting to be a veterinarian when I grew up, so that I could have animal contact.  (The fact that for one thing, vets don't really get to cuddle with their patients, and for another, most animals at the vet are cranky and/or terrified at best, injured or sick or dying at worst, didn't seem to have occurred to me.)

I remember wanting to have a huge house when I was older, so that I could have all sorts of different animals -- cats and dogs and birds and rabbits and whatever else I could manage.  I had visions of one room for each set of animals, which in reality would work okay for things in cages, but have you ever tried keeping a cat in a single room?

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At some point in late junior high or early high school, I ended up getting some fish as a pet.  Not the "single goldfish in a tank" sort of thing, but a largeish aquarium with multiple kinds of fish living in it.  Most of the fish did't have names, but I remember naming one of the first ones I got -- Aras, because the turned-up nose reminded me a little of a rather annoying and snobbish Sara at school, but the fish was so much prettier.

An aquarium full of fish is quite attractive -- well, as long as it's maintained well and kept clean -- but I did discover one thing: fish are not particularly cuddly.  And so it didn't really help with the desire to have something I could cuddle with.

I sometimes wonder whether, if I had thought of the possibility, my parents would have let me have a snake as a pet.  Not a big snake of course, something like a corn snake or two, but snakes are a lot more interactive than fish.  They are not fluffy, but they can be held.  (I am, obviously, not the sort of person who is afraid of snakes.  I mean, I have a healthy respect for the venomous sort, but snakes in general are fascinating.  And not slimy, just cool and smooth.)

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I am going to temporarily fast forward out of this chapter of my life to cover the rest of pet-stuff.  I'm not quite done with high school (there are at least two, possibly three, more things left that I have to talk about from that era) but I might as well stick with the theme.

So.

College: I still had no pets.  Partly because they are discouraged in dorms, partly because when I was on break I was still living with my parents, who needed to keep the house fur-free for my sister.  However, I did at that time encounter the concept of a service dog -- not plausible for while I lived at home, but a possibility for once I moved out.

Shortly after college: I discovered the idea of a snake as a pet.  I had been able to handle some snakes at our local science center, one a corn snake and one a ball python, and I sort of fell in love.  Plus, they would not trigger my sister's allergies, so were a safe option, and I could take complete care of them.

I spent several years researching, and also trying to find a good source for just the right ones.  I had narrowed it down to those two types, leaning towards corn snakes because they were smaller and a little more adorable.  Except then I found a craigslist-type ad for someone looking to rehome a yearling ball python, and I arranged a visit to check it out.

I remember holding the snake, who -- true to its name -- was curled up in a tight ball.  And I just sat there and held it, not forcing anything from it, just holding and sort of stroking gently with my thumbs, as I talked to the owner, and slowly he uncurled and started exploring.  And I think that impressed the owner, because it showed that the snake was comfortable with me, and it also showed that I wasn't trying to wrestle him out of his comfort zone before he was ready.

We settled on a price, and I told her that I would think about it overnight to make sure and then call her the next day with my final decision.  And I thought about it, and thought hard, and had mostly decided that I would pass up the option in favor of waiting for a corn snake, but I decided to sleep on it.

That was September 10, 2001.

I ended up getting the snake, out of some weird need for ... I can't even explain it, sort of a confirmation of life?  I don't know.  I just remember that the events of September 11 turned my hesitation against getting that particular snake into a determination to need it.

He ended up not being the smartest of snakes, but very sweet, and I think my mom fell in love with him almost more than I did.  When I stopped being able to take care of him, he went to live with her.  (At that point I had aides helping me with personal and household tasks, but they generally were terrified of snakes, and didn't want to even see him in his tank, much less help with his care.

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There are more aspects of the pet saga in my life, but I will save those for another time.

Math

So I have pretty much always been a math geek.  That is the short version of this entry.

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I remember CAM(e)L, which I think stood for California Mathematics L*mumble* (League, maybe?) which was a totally optional after-school thing that was sort of mini math tests -- research tells me there were six over the course of a school year, but there were of course practice tests, possibly taken from previous years' real tests -- and I loved them.

I remember the Math Team, an after-school program that went to matches in the area and, er, took math tests, basically, as a competition between schools.  I don't remember details, but it was a combination of different sorts of math, and anyone who got a perfect score in that competition got an extra prize, which was generally math-related.  I managed it once -- not entirely legitimately, because there was a geometry problem that I couldn't figure out so I just eyeballed it and said "eh it looks approximately as long as x" and put that down as the answer and, despite the fact that drawings were generally not to scale (and so eyeballing was not reliable), that was correct.  I got a calculus textbook of my very own.  I loved it.

I remember doing ARML, the American Regional Mathematics League; we trained at Stanford on weekends, and then went to UNLV for the tournament.  It was more varied than the math team stuff, having individual components and group components and also relay components (where each person had a different problem, and the answer to the second person's problem depended on the answer from the first person's problem, and the answer to the third person's problem depended on the answer from the second person's problem, and so on, and if anyone in the chain couldn't finish or screwed up their calculations then no one got points).  I remember there were a lot of Asian males on our team, which didn't seem surprising.  I also remember being amused that the Las Vegas airport had slot machines in it, and none of us were legally old enough to gamble.

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In one of my math classes, the teacher -- a completely kick-ass woman who was a strict and rather formidable teacher but very awesome, especially when  it came to encouraging students (and girls in particular) in math -- told us about a summer program, PROMYS, that was a six-week summer camp in Boston entirely for math.

I, of course, begged my parents to let me go.  Which they did.

The six weeks were devoted to number theory; returning students could take additional seminars in other areas of mathematics, such as combinatorics or abstract algebra.

I remember learning about other number bases, and actually fully comprehending for the first time the base-10 number system we use.  I mean, I knew how to do base 10; you learn early, with blocks and such as physical representation of ones and tens and hundreds, and you know that ten ones make ten and ten tens make a hundred, and you know that if you subtract 75 from 93 you borrow a 1 from the second column to give you 13 in the first column that you can subtract 5 from, and I could do math but I didn't really understand it.  And then you get base 2 and base 8 and base 16, and suddenly the written representation "10" gets divorced from the number ten, because 10 in base 8 is eight, and ten in base 8 is 12, and it's no longer ones and tens and hundreds but ones (really the base number to the 0th power, but that's always one) and base and base-squared and base-cubed.  So 325 in base ten is five ones plus two tens plus three ten-squareds.  And it sounds dorky as a thing to get excited about but I loved it.

I remember writing out proofs of things like "a x 0 = 0 for any value of a" or "a x 1 = a for any value of a", things which are generally presented as basic axioms except that we were using more basic, more fundamental truths to prove them.  And I loved it.

I remember the joke about the horse with an infinite number of legs, done in proof form: A horse has four legs, which is an even number.  But a horse has two forelegs (four-legs) and two hind legs, making ten legs, which is an odd number of legs for a horse to have.  And the only "number" that is both even and odd is infinity.  Therefore, a horse has an infinite number of legs.

I remember the sky at night -- a sort of murky red haze, like living on another planet -- and I remember the thunderstorms and the rains.  Here, where I grew up and live now, we don't ever get summer rain, and the rain we get is icy cold and unpleasant.  There, summer rain was warm and delightful, and I remember going outside (I was using a manual wheelchair at that time, which wouldn't be damaged by getting wet) and spinning in circles and laughing because it felt so good.

I remember the Fourth of July, and the naive assumption that we could get a decent spot without camping out for three days prior.  Fireworks in Boston are a tad bit more crowded than they are here, and we ended up basically on the sidewalk of a city street, with the music from the Boston Pops orchestra piped in through loudspeakers, and we could only see the highest fireworks above the buildings around us.

I remember getting a flare-up of FOP in my right shoulder right around "midterms", leaving me unable to write and thus unable to take the test.  That frustrated me more than the flare-up itself.

I remember the flight home, where I got upgraded randomly to first class, but I was so sleep deprived from the camp that I slept through most of the flight, leaving sticky drool on my face and shirt.

I woke up in time to eat the chocolate chip cookie, though.

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One of the required classes in high school was physics, but the physics teacher at the time was, shall we say, undesirable.  He thought that women had no place in science; he thought that physics was something that no high school student would actually be interested in, and only ever took because they had to; and so on.  At least, that was his reputation, and it didn't sound fun.

But there was a way out.

This being a university town, we had an agreement with the local university: high school students could have the option of taking college classes (for credit!) as long as those classes weren't offered by the high school.  So one could not, for example, take first-year French at the university, because the high school offered that, but fifth-year French was not offered by the high school so could be taken by advanced French students.

More relevantly to this anecdote, one could not take ordinary physics, even if one did not like the attitudes of the only teacher available, but one could take calculus-based physics.

This required taking (and passing) calculus in one's junior year, which in turn required a summer of independent study, because the standard progression of math classes called for calculus in senior year at the earliest, and so in order to take calculus as a junior, one had to jump ahead.

So I did that.

There were several AP calculus classes offered at the high school.  This is partly because there are two AP calculus exams: calculus AB, which covers a set amount of material, and calculus BC, which covers that amount of material plus some extra, and therefore goes at a faster pace.  The class I was in -- calculus BC, taught by the awesome math teacher who introduced me to PROMYS, whom I still consider one of my favorite teachers -- was hard and fast-paced, and the school offered a calculus AB class in the same period that students could drop to if they were having trouble.  As a result, the class size dwindled over the academic year.

I loved it.  (Are we sensing a theme?)

I even remember one time when the teacher asked if anyone knew the answer to a problem, and my hand shot up -- I was so very much a Hermione, except that the Harry Potter books hadn't been written yet and so there was no such comparison to be made -- and she made a comment along the lines of yes, I know you know the answer; you may as well stop putting your hand up every time, and I'll call on you if no one else knows it.  Because, well, yes, I did always know the answer.  Because I loved math.

Now, taking calculus early was primarily for the purpose of taking the calculus-based physics.  (Which was a four-quarter series, so I took the first quarter over the summer, and kind of floundered at first because it was a university course and I was in high school and not used to that level of rigor; I flunked the first exam, though I am still a little resentful that the make-up exam offered didn't allow for partial credit, because one of the questions I had right until one of the last steps where I left off a square root sign, so it was mostly right but never mind that.  I pulled my grade up to a B, and got A's for the other three quarters.)

But it also allowed for taking post-calculus math at the university.  Linear algebra, differential equations, and vector analysis.  I had no explicit reason to take those, except that it was more math, more stuff to learn.

I remember one of these classes, where the instructor would write the top three scores (without names, just numbers) on the board, as well as some other information.  And there was one exam, dealing with matrices, that I found pretty straightforward: do A in X situation, do B in Y situation, just plug and play.  I got the exam back with a 98, and a smileyface, and I was pleased.

And then he went to the board to write the top three scores.

98.  78.  78.

I had literally scored far higher than anyone in the class.  And I was in high school, and young for my grade.

I practically floated out of the classroom that day.

(I also remember overhearing one student asking the professor in a worried voice whether the 98 would seriously affect the curve.  And I just floated, though I was also glad there weren't names attached, because I probably would have gotten beaten up for the grade I got.)

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So yeah.  I loved math.

And then I went to college, and during orientation I approached one of the math faculty and basically said "I've taken calculus and these other classes, what do you recommend I take next?"  And he said "Nothing," because of course AP classes and university classes meant I had fulfilled the math requirement, "and don't come after my job."  Which left me a little baffled, because I'd assumed that a math person would go "oh yay someone excited about math" rather than "stay away from me", but hey, at least I didn't have to take any classes from him.

But college is another chapter, and I'm not quite done with high school yet.

Academics

Some more academic memories from high school:

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Taking music theory as a sophomore (10th grader -- our school district divided things up so that Junior High was grades 7-9 and High School was 10-12) when everybody else in the class was a junior or senior.  I had a good reason fro doing it early, at least: the music teacher, who was awesome beyond belief, was retiring after that year.  I wanted to take the class from him because I didn't know who his replacement would be or how much they would know.

I remember doing a report on the violin, on its history and construction, for some sort of major research paper.

I remember a listening exercise where he had us right down what impressions we got from listening to a piece of music.  I was totally convinced I had recognized it as Tschaikovsky's Peter and the Wolf, so my descriptions were all related to that story.  Turned out to be Mussorgsky's Pictures at an Exhibition.  Luckily it wasn't a graded assignment, nor even one where we shared our impressions with the class, because I was quite proud at having "recognized" it.

I remember him asking if any of us had seen any operas performed live, and my hand went up -- Tosca, and La Traviata, "and Phantom of the Opera of course", to which he sort of flusteredly had to correct me on the difference between operas and musicals, and the fact that even though Phantom has parts of several (fake) operas within it it wasn't really an opera.

I remember the AP test -- because this was an Advanced Placement course -- and having to pick out and transcribe the bass line from a given clip of music.

I remember a composition assignment where I had written the melody on one piece of paper, and then was transcribing it to a different piece of paper (within the same notebook) as I came up with the melodies.  We could bring unfinished fragments to him to play on the piano to make sure they worked, and he gave me a very stern (or so it seemed) lecture about how I should do the melody first rather than just letting it happen, and I was very awkwardly embarrassed because I had, it just wasn't on that sheet of paper.

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I remember auditioning for the Madrigal Choir, and not getting in -- probably a good thing overall, since there was a regular choir to fall back to, and the Madrigals had extra engagements as well as having to make their own Renaissance-y costumes -- and having one of the auditioners earnestly explain to me that it wasn't at all because of my disability, it was just that my voice wasn't mature enough yet.

I have, for the record, never developed vibrato -- something I was always told would come when I matured, except it never did -- but I like to think my tone has gotten better.  Less breathy, anyway.

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I remember the person who was chosen to replace the awesome retiring music teacher, and my dislike for her.  She was a nice enough person, but very prim and proper -- there are conductors who use their whole body to conduct, and there are conductors who just sit cross-legged on their chair and make very dainty gestures, and she was one of the latter.  And she dissed "On My Own" from Les Mis, Because Eponine was being all whiny.

(I will admit to having a skewed version of Les Mis at that age -- it was a compete and epic tragedy that Marius didn't love Eponine back, for example, because obviously he should have, just by virtue of her loving him -- but no, you do not openly mock Les Mis.)

(She did, however, let us do the Phantom of the Opera overture in blacklight wearing white gloves, which was kind of awesome. so I forgive her.)

(Mostly.)

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I remember taking AP Politics, and the chance to do basically a student version of city council.  It was a volunteer thing, but I was fascinated to know how stuff worked, so I volunteered.  (Except I lied to my mom -- sorry, mom! I promise it wasn't a frequent thing! -- to the point of telling her it was required, because I was afraid she wouldn't let me do it.)

I remember that we got to choose what role we took, and I had treasurer as my first choice, because I loved math and that was the mathiest thing available; but I also remember that when it came time to shadow the person who did the real version of the job, he grumbled about how it was probably a last choice thing that I got stuck with, and I got all tongue tied trying to explain how I felt about math, even budgetary math.

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I remember the computer programming course I took, and I love the teacher I had because she treated it more like independent study, everyone at their own pace.  There was of course a minimum amount of progression required to pass, but what it meant for me was that I was able to tear through material as fast as I could understand it, without waiting for other people to catch up.

I remember one assignment that stymied me -- we had learned about if/then sequences, and also about for loops, separately, but there was an assignment to print out baseball inning sequences (which was mostly a for loop and printing "nth inning" but with "seventh inning stretch" added) with a single for loop.  At first the only way I could do it was to do two for loops: one for 1-7, break out to print about the stretch, and one for 7-end.  It took me a while, and a lot of prodding, to figure out that I could nest the two: have a single for loop iterating over all the innings, and then an if-then statement that only triggered on the seventh inning.

I remember tearing through Pascal, and moving on to C, and discovering that I loved programming.  I'd forgotten about turtle logo; I'd forgotten about the books I had that involved doing simple code bits in BASIC to solve puzzles that let you progress through the story; so it was more of a rediscovery than a first time, but it stayed with me.

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I remember AP English, where the teacher had us writing an essay every Friday during the class.  The topic was never given in advance; it was meant to prepare us for the AP test, where we would have a short amount of time to write an essay on a given topic.  And it was graded according to the AP scale: 0-5, which only the best essays got a 5.

The first Friday of the year was our first essay, and almost everyone got a 0.  We didn't know how to write essays, in my case really at all, let alone in the 50 minutes allotted to each class period.  But we learned, and we got better, and by the end of the year most of us were getting 5s.

It was the best English class I ever had, I think.

In which I discover musicals

Growing up, I was a pretty strange kid musicwise.  I didn't care about popular music, or even the music of my parents' generation.  My thing was classical music.  Mozart, Beethoven, Bach, Haydn, that sort of thing.  Mostly instrumental, mostly orchestral (or, because of my violin lessons, violin concertos).  This worked out pretty well for me, since CDs of classical music were on the cheap side.  Popular stuff could run $16 for a single; classical music was in the cheap bin, mostly $5 stuff.

(For the record, I still do like classical music a lot.  I just have a broader spectrum of stuff that I listened to.)

I should also point out that I wasn't too fond of opera.  The plots tended to be slow (seriously, do you really need a twenty minute aria about how you have been stabbed with a sword and are therefore dying?), and they were rarely in English, and while live opera did have subtitles, CDs didn't, and anyway operas were long.  I also wasn't fond of the large choral pieces like Handel's Messiah or similar, because they would say the same thing over and over again.  Literally.  It was like reading a book, except every sentence had to be said twenty times.

But somewhere along the line, I discovered Broadway musicals.

It might have been in London, where we saw a few (okay, it was technically West End, not Broadway, but the musicals were the same).  It might have been later.  I know there was one trip to Boston where we saw Phantom of the Opera -- I don't remember when, I just remember seeing it.  (And I remember my dad getting a bad case of food poisoning from some clams the night before.  But let's not go into that.)

My Phantom obsession started in Boston, I'm pretty sure.  I got a stereo at some point, and I remember testing it in the store using the Phantom overture (which is a good thing to test with because it's nice and loud, but I was all awkward and embarrassed because, goodness, people might find out I liked it!  Obviously I was the only person in the world who liked Phantom).  I remember playing the CDs over and over again.  I remember one summer when I was at camp and borrowed cassettes from a friend and practically wore them out over the six weeks.

And I found others.  Les Miserables, obviously.  (I started out with the Original London Cast recording, and there is one song -- "I Saw Him Once" that doesn't show up on other recordings that, now, always reminds me of physics homework done during the summer before senior year.)  My sister also introduced me to the Secret Garden musical, and to Chess, although the latter bothered me because -- gasp -- it used bad words.

(I was brought up with the understanding that one must never say the f-word or s-word or d-word, and I was very good about following that.  Partly because it was a Rule, and Rules must be followed; because if my mom heard something bad she would flick a finger against our lips, just barely hard enough to sting. I don't actually remember any time that happened, but I do remember one time I said something smart-mouthed and ducked out of the way of the finger-flick.  At any rate, I never used swear words until I got into college, to the point where I remember one of my friends at one of the language camps commenting on the fact that I used something as swear-ish-y as "pissed off".  So a musical that had lyrics like "Refugee, total shit--That is how I've always seen us." ... well, it was a tad shocking.  Though it did become one of my oft-listened-to favorites.)

It wasn't that I liked all musicals.  Brigadoon, which my high school put on and I was in the pit orchestra for, didn't stick; I mainly remember the stage fog (which, being heavier than air, liked to creep its way down into the pit) and the ew factor of the two main leads kissing (they were boyfriend and girlfriend in real life, so the kisses were not just stage kisses but full-on slobbery real kisses).  Bye Bye Birdie and Carousel, also high school productions but ones I wasn't involved with, also didn't stay with me, the first because it wasn't my sort of music and the second because it was too depressing.  Oklahoma was good but scared the crap out of me, so I didn't either watch or listen to it a lot.

But overall, as a genre, I loved musicals.  They were generally in English, they didn't have a lot of boring repetition, and they were fun to sing along to.  And the ones I really truly loved (Phantom, Les Mis, and Secret Garden,at least for high school; others came later, in college, but that's another chapter of this saga) I listened to over and over and over again.

I was probably pretty annoying about it, really.  But I had fun.

A quick diversion into religion

This is not going to turn into a religious blog, I promise.  But it's only appropriate that I mention it.

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As kids, my sister and I were raised with a sort of lax combination of Judaism and Christianity.  We didn't go to either church or temple (although I have vague memories of learning Hebrew, probably at the local synagogue), so it was mostly home-learnt stuff.  My father had been raised Jewish (via his father, so it doesn't count for orthodoxy -- Judaism is matrilineal, and my grandmother was not herself Jewish, so he didn't qualify, much less me and my sister), and my mother had been raised Christian (I can't remember whether it was Methodist or Lutheran), so we got a bit of each.

The biggest thing I remember from this is that we had twice as many holidays.

Christmas: yes, there were presents, and Santa, and all the (pseudo-)secular aspects of the holiday, but there was also baby Jesus and that whole story.

Hanukkah: more presents, or at least gelt (foil-covered chocolate coins), plus candles and singing and learning about the miracle of the eight days of burning oil.  I wasn't very fond of fire, which made lighting the first candle interesting, but the other candles were lit from the first, so that was fine.  My sister and I took turns each day, one picking the candles to be used and the other lighting them, and as they burned down we would choose one to "race" against the others, seeing which would last the longest.  Plus, we would usually get potato latkes at least once, eaten hot off the pan with plain yogurt and/or applesauce

Easter: Candy, but also learning about the whole crucifixion thing, which was not fun.  Also, Pontius Pilate had a funny name.

Passover: Food!  I mean, there was ritual seder stuff to be done first, though I was usually the youngest so got to ask the four questions, but even the seder involved food; and while I know that horseradish (maror, bitter herb) was supposed to recall the bitterness of slavery, and the parsley (I think representing spring) dipped in salt water (meant to represent the tears of said slaves while they were laboring in Egypt) was also supposed to reference slavery and therefore not fun times, I loved eating both.  Matzah with horseradish (I preferred slices of the actual root, not horseradish sauce) was awesome; matzah with horseradish and charoset (a mixture of apples, nuts, possibly honey I can't quite remember, and wine, meant to represent the mortar that the slaves used to build bricks, but very sweet and yummy) was even better; I was the sort of child who would eat parsley as a vegetable (not just in garnish quantities but in large amounts), so any excuse for that was welcome.

(Unrelated to religious stuff, I was also the sort of child who would eat vegetables by the bowlful; we grew cherry tomatoes, and my parents would put a large bowl of said tomatoes in front of me to "guard" from any miscreants who might sneak in and steal them, and of course the safest and most secure place for me to guard them from was inside my stomach.)

Passover also meant matzah ball soup, which is amazing and wonderful.  There were also other foods during the meal, but I remember the soup best.

Religion for me, as a kid, was not really religion in the spiritual sense.  It was ritual, like the holidays listed above, and it was history, particularly what happened in Biblical times, both Old Testament (especially the first five books) and New Testament (especially the gospels).  We did have family bible reading time, and discussion thereof, but I don't recall actually believing much in the way of religious faith.

(I do remember that my image of God as a child was basically the "old white dude with a beard" thing, basically Santa Claus without the suit, who lived in heaven which was above the clouds.  I was very disappointed when I was on a plane and we were well above the clouds and I couldn't see anything heavenish at all.)

Somewhere in junior high, though, I started attending one of the local churches.  I had friends that went there, which made it very easy to start without the isolation of being in a new place.  Plus, the choir director for the junior high choir was also the music director at that church, and a fair number of students in the choir were also in that church's youth choir, so while there was absolutely no outside pressure to do both, I felt like it was something I wanted to be a part of.

That the church was Presbyterian -- that it was Christian at all -- was really sort of coincidental.  It could as easily have been a Jewish synagogue, except that I had fewer friends who were Jewish (at least that I knew of) and there was significantly less visibility in my social circle.  But I do think that it's not a coincidence that this was around the time of my diagnosis and all that fun stuff, because I think I needed something external (internal? I'm not sure which.  Faithful, anyway) to hold on to.

Not, I must add, in the sense of "If you pray hard enough, Jesus will cure you" -- which is literally a sentiment I have heard expressed, that just rankles me to no end.  Yes, there are situations where someone has prayed and then gotten better, and I do think prayer has certain benefits in certain aspects of certain situations, but it's not directly causal, and it's not about praying hard enough.  Because there are so many people that get sick and/or die, and so many prayers surrounding them, that it's just not possible that Jesus will magically cure anyone who prays enough.  It's also victim blaming: if you're still sick, you just aren't good enough, or didn't try enough.  And I don't buy that.  Not for everyone.

But religious or spiritual connections can provide an anchor of sorts, and it also provides a community, and both of those are important when you're going through a lot of changes.  I was still more interested in the rituals (and the reasons behind the rituals) and the history and suchlike, but it was still a situation that worked out for me.

(I still go to that same church now; I don't agree with all of the tenets of the Presbyterian church, but my particular church is very ... I'm not sure what to call it, progressive? ... and very welcoming, and very music-oriented, and it is sort of a family to me.  And I do identify as Christian, but one with significant Jewish roots.)

In which I mention FOP.

You'll notice that a lot of these memories don't directly involve FOP.  And I think that had a lot to do with the fact that I wasn't really thinking about FOP much.  Yeah, the medical stuff I went through sucked like a really enthusiastic vacuum, but it was not really anything I cared about.

I also didn't really realize the scope of the condition.  This was the early 1990's, and while IFOPA -- the International FOP Association, created as a way for people with FOP and their families to connect with each other and with researchers doing work on the condition -- had been started by then, there wasn't a good way for continual contact, because the internet wasn't a big thing yet.  There definitely wasn't anything like Facebook or other social media that allow people to connect easily over shared interests.

There are two times that I can remember meeting, in person, someone else with the same condition.  One was a family living in Grass Valley, not too far away considering everything, with a girl about my age, and we went to visit, but it was ... sort of like walking into another world.  For starters, there were no books in their house, and the only printed material was a TV Guide.  (I grew up with practically a library in our house, and very active visits to the local library, and not much TV watching at all; it was a very long time before I realized that our television in fact got channels other than PBS and local news.)  For seconds, she and I had nothing in common except our approximate age and our medical condition.  (The fact that I liked school, liked learning, and liked books, was met with stunned and sort of baffled silence.)  And for thirds, we had very different attitudes towards how to deal with the disease: I erred more on the side of being careful, whereas she went for doing things while she could.  (And by "things" I mean such activities as riding her bike down a hill when she couldn't reach the handlebars, or rappelling down cliffs, or bungee jumping, a lot of physically risky activities done with the theory that "Jesus would protect her".)

The only advantage that meeting had was that it gave me some idea of how differently FOP could manifest in different people.  Hers had started young, and her arms were totally locked in position.  It isn't the sort of disease that follows any sort of predictable pattern.

The other was a ... basically, a convention for FOP people.  This was probably around 1994 or 95.  I don't remember much from that, except for a discussion on whether using wheelchairs to get around was a good thing (more independence, less risk of falling) or a bad thing (giving up on walking).  I remember a few people, other FOP sorts, but I was too shy to really talk with a lot of them, even the ones around my own age.  And I remember meeting Harry Eastlack, the FOP skeleton mentioned a few posts back, which was a rather impressive experience, because it was a way to see what was going on inside my own body.

But back to the whole scope thing: I remember one discussion (not at the convention) where one of my parents, I think my mom, was describing to someone else how FOP progressed, and mentioned that it could affect any and every joint in the body, leaving someone a literal statue, unable to move more than their fingers.  Overhearing that horrified me, except my mom pointed out that that was only the most extreme examples, and it doesn't go that far with everyone.

At the time, I basically shrugged it off with an "oh, okay" and figured: that isn't going to happen to me.  After all, my FOP manifested late, only becoming active in my early teens rather than in my infancy as with some patients.  Surely it wouldn't go that far.  I'd coped pretty well with the changes that had come, and I would continue to do so, and in retrospect that kind of optimism is both as adorable as a new puppy and something I wish I had a time machine for, to say: You don't have as much time as you think you do.  Focus on what you enjoy, live your life for what you want to do rather than for what you think society expects you to do, and please do a lot more cross-stitch because you will miss that when you're gone.

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But really, FOP doesn't figure in my memories much, at least not explicitly.  I remember making a joke to my 8th grade science teacher, during our unit on human anatomy, that while the human body has 270 bones (and we got to memorize all their names), I actually had 271 because of the added bone in my ilio-psoas area.  (My teacher didn't understand it, much less find it as funny as I did.)

I know that somewhere in junior high or high school, I stopped being able to raise my hands completely over my head.  There is a moment I remember, but can't tell you when it happened, where I tried to hang from the monkey bars on the play structure in our back yard, and couldn't, because my shoulder wouldn't rotate that far comfortably.  And in 11th grade, I got my hair cut -- it had always been long, often braided, but I was having more and more trouble taking care of long hair, and so haircut it was.  (I looked sort of like a clown.  That particular haircut makes me cringe when I see photos.)

I know that I got multiple flare-ups on my upper back and shoulders that made it painfully impossible to lie down.  The swollen and inflamed area of a flare-up is painful even at the best of times, but is very sensitive to touch, much less to the pressure of lying on it.  I had to sleep half sitting up in a beanbag chair, during those times, and I didn't sleep well because of pain and because I much prefer lying down for the whole sleep thing.

I know that I stopped being able to lie on my stomach, but I could still lie on my side, or do a weird sort of three-quarters position that was the closest I could get to being flat on my stomach.  (Much later I stopped even being able to do that, because my arms started getting in the way.)

I know that I could still walk, even if my left foot was on tiptoe and I sort of limped (I guess the possibility of building a platform sole on that side hadn't occurred to me), but by high school I started using a manual wheelchair to get around campus, because I could walk but not fast and I couldn't get from one end of the high school campus to the other in the time given between classes.  I couldn't do the normal sort of wheelchair movement, pushing with arms -- I couldn't lean forward, and I didn't really have the required range of motion in my shoulders -- so I got around using the same trick I'd used in junior high after the surgeries, where I used my feet to sort of pull the wheelchair along.  In my head I sometimes liked to imagine myself in a chariot pulled by horses, and my legs as the horses prancing along, although I never told anyone that because I knew it would generate at best mockery and laughter.

But at home I was still getting around by myself, with the aid of a cane for stability, and I could still do everything for myself that needed doing.

More memories, mostly junior high

A few more childhood memories:

Auditioning for a role in the local Children's Nutcracker, except I couldn't stop giggling because the person I was reading lines against (an adult, not another child) was using a voice that struck me as goofy.  I didn't get a speaking part.  I did, however, get to be one of the snowflakes.  (I remember the first rehearsal where we were told to line up, so my best friend at the time and I stood together, except then they paired off down the line -- one, two, one, two, etc. -- to make two equal lines, so we got split up.

Doing the Children's Nutcracker the last year I was eligible; I was one of the Russian dancers.

Doing Oliver as the school musical in England; the audition piece for the role of Oliver (which they were allowing any kid to do, not just boys) was a soft sad song, so I sang softly and wistfully, except then they said no because they couldn't really hear me.  I wanted to protest that I could sing louder, that it was an Artistic Choice rather than a lack of singing volume, but I was too shy and anyway no one got do-overs.

I did continue drama in junior high -- I was a flower in Alice in Wonderland (except that I was the only one with no ballet experience or ability, so I kind of stood out; I also was in a performance of A Christmas Carol, and I insisted on being Tiny Tim because he was so ~inspirational~, and the drama teacher wasn't happy with that because it felt like typecasting (because that was after the FOP had kicked in and so it was sort of "have the disabled kid play the disabled kid") but let me do it.  I do sort of wish that I had asked for a larger part, though.  I got bored to the point of being able to memorize everyone else's lines.

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At some point I joined the local kid's swim team, I think because water exercise is the best sort for people with FOP.  (It's low impact, and you aren't doing a lot of standing.)  The tryout for it had me swim two laps, across the pool and back, and by the time I was done my limbs felt like rubber.  I knew how to swim, but previous to that I tended to spend pool time goofing off rather than doing laps, plus I was trying very hard to impress the people in charge so they'd let me in.  (I also remember that we forgot a towel, so when I went to shower afterwards I had to drip dry before I could get dressed.)

I remember swimming in the rain, which was an oddly magical experience.  If there was any chance of lightning, of course, we had to get out of the pool and stand shivering where we wouldn't fry from a lightning strike; but without that chance, I loved swimming in the rain.

I remember swim meets, where I was pretty much always the slowest.  I got ribbons anyway, because they gave ribbons to everyone, but getting an "8th place" ribbon when there were only eight swimmers in the heat is a little ... discouraging.

I remember one practice where I got stung by a bee: I was doing an exercise meant to help with backstroke skills, where you swam next to one of the lane lines and pulled yourself with that hand.  There must have been a bee sitting on the lane line, and I must have smacked my hand right on it, because I felt a sharp pain.  I remember thinking "Oh, so that's what a bee sting feels like", and scratching out the stinger the way I remember being told to, and then going over to the instructor and ... er, waiting politely while she finished the instructions she was giving to a different group, before getting her attention when she was free (I was a very polite and shy kid) and saying "Uh, I think I got stung by a bee."  She told me that it would have been perfectly appropriate to tell someone immediately, and she made me get out of the water while they watched for any allergic reactions.  Luckily there weren't any.

I also remember that, for some reason that I absolutely cannot remember and cannot even come up with a plausible possibility, joined the water polo team.  I don't remember ever enjoying it; I remember being miserable, and dreading it.  I remember that I was absolutely thrilled with myself the first match (not just practice, actual match) that I made all the way through without once going to the side to hang on for a few minutes out of exhaustion.

(I kind of miss that sort of ... I don't know if you would call it optimism, but -- the state of mind where you judge yourself based on your own progress rather than comparisons to others.  I was honestly thrilled and proud for managing it.  These days, I would be more likely to rip myself to metaphorical shreds because, yes, sure, it was the first time I managed that, but it was something everyone else on the team managed every time without problem; it was a baseline minimum, not something worth celebrating.)

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There was one time in 8th grade history that the teacher offered to buy a milkshake for anyone who could answer his question.  I don't remember which direction the question went, but it had something to do with "Seward's Folly" being the term for the purchase of Alaska (since it seemed like a bad idea at the time).

Now, I must preface this by saying that the year we were in England, when I would have been in 5th grade, my sister would have been in 8th grade.  And 8th grade is when you take U.S. History, which for some odd reason isn't covered much in British schools, any more than the dates of kings and queens of England had been covered in ours.  So to make up for the missed class, my sister had to study on her own, which meant my parents had to drill her a lot.  And often this happened on car trips, where I -- as captive to the process as she was -- absorbed some of the information by necessity.

And three years later, I still remembered some of it.  Not everything.  But somehow Seward's Folly had stuck in my brain, and so when he asked the question -- which was either "What did 'Seward's Folly' refer to" or "What was the contemporary term for the purchase of Alaska", though probably the former -- even though we hadn't covered it at all, my hand shot up immediately and I gave the answer.

His expression turned from a smug "I bet none of you will get this" to a rather annoyed put-out sulk.  He did pay me a couple dollars though; I was just happy to have known it, and didn't care about the money, but he had promised payment in front of the class.

Harry Potter had not been written yet, but I was so totally a Hermione.

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The junior high had a magazine selling program going while I was there -- the sort where the kids went door to door trying to sell magazine subscriptions, and got points for each subscription sold.  You could 'buy' things with the points, plus the top sellers got special prizes at the end of the drive period.

Some of the prizes were useful: for some ridiculously large number of points, you could buy a camera.  I don't remember if it was a good camera, but it was at least something worth getting.

Some of the prizes were just cute: my favorites were these little critters, I don't even know what to call them.  They were sort of grown-up versions of the pom-pom creatures I made as a kid (wind yarn into a pompom, tie and trim as appropriate, then glue on googly eyes and felt feet), the same sort of "little ball of fluffiness with extras glued on", and they were freaking adorable.  They also came with an elastic loop that could fit around your wrist, or be used to hang them from things, or whatever.  They also were a lot cheaper pointswise.

There was one time that I decided to get a bunch of the little fuzzy critters.  I didn't get duplicates, but there were so many that I liked, and I just decided to get one of all of those.  I wore them around my wrist like a big fuzzy bracelet, and was super proud of them, and loved them, and cherished them.

Until I got home.

I remember my mom getting super upset at me for "wasting" the points like that.  Because it would have been so much better and more sensible to save up for something good like the camera.  Because the critters were cheap, and the company in charge of the prizes was trying their hardest to trick people into getting the cheap stuff rather than the sensible stuff that would have cost more.

I know now that she was just frustrated on my behalf at the company, but all I remember is the sick horrible feeling that I had done the wrong thing (and I was always very big on following the rules -- my mom has an anecdote of one time when I was in early elementary school and we were told to bring a brown bag lunch, and I threw a fit over taking a lunchbox because it wasn't a brown bag and that was breaking the rules and that was just inherently wrong -- so doing the wrong thing was sort of the worst thing ever), and I wasn't able to even look at any of the critters again without bursting into miserable tears.  Even by the end of high school, the sight of one of these guys would open a pit in my stomach.

There are a few things for which I wish I had a time machine so that I could go back and give my younger self a hug and say, "It's okay to love what you love."  This is one of them.

Jigsaw, teen edition

Some things I remember specifically from junior high, that have not already been mentioned:

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Music.  So much music.

Orchestra, putting my violin lessons to good use.  There were two junior highs in our town, and not enough students in either for a separate orchestra, so we met at the high school.  I don't remember much from junior high orchestra, except for one time when I did some sort of honors regional youth orchestra and I got placed way back in the first violin section and I was so embarrassed by being so far back (never mind that I had qualified at all) that I was trying hard not to cry.  Which led to staring at the ceiling, which led to being singled out and yelled at by the conductor for not watching.  (Technically I was watching, using peripheral vision, but they couldn't know that.)  That ... did not help the crying thing.

Choir, where I was classed as a soprano.  (Still am, for that matter.)  Only it got boring sometimes, especially the sorts of pieces that had multiple verses and sopranos had the melody (boring, boring, and always the same), so I begged to be allowed to switch to alto (which was more challenging, being not the melody and not the top part, and also tended to change more with different verses) but wasn't allowed.

Choir again, where we were singing a round, and we were told to sing four times through.  I counted very carefully and the fourth time I was the only one of my part singing, but I closed my eyes and hung on to all the courage I had and kept singing through the end of the verse.  I was proud of myself, and only realized way later that I had probably miscounted, and that the teacher's "Thank you, Miriam" at the end was probably sarcastic.

Choir yet again, at the memorial for our principal, who had died of lung cancer.  We sang "On Eagle's Wings", which to this day still brings me to tears, and there were several solos.  The director asked for volunteers, and my hand was the first to go up, because I didn't care if my voice was breathy and not well supported and really not suited to solos, I wanted to sing to express my love for the man, who had been my favorite principal ever.

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Other things:

The non-singing part of the memorial for said principal, where we were all gathered in the multipurpose room and I was in the back and I was trying not to cry but I still got dirty looks for my sniffles.

I also carried a lot of guilt about his death, because he had been in the hospital for a while because of the lung cancer (he was no smoker but cancer is not selective) and there was a school-wide "make cards for Mr. Reid" drive to show our support for him, and I meant to do one but hadn't gotten around to it.  When my mom told me that he had died, I just sat there in shock -- I did not have much experience with cancer, which is either ironically hilarious or perfectly understandable given my own experiences with "cancer" that turned out to be something else, so I had assumed he would get better, as with any illness, and come back to work.  My mom later told me that I had looked like I was on the verge of tears, which sort of relieved me because tears are the proper response to death, but what was really going through my head was the fact that I hadn't gotten the card made and maybe he had died because he didn't realize how much he was loved and that one card could have made the difference.

This is of course implausible, and it is also something I have never before admitted because I grew up with the belief that outside impressions were everything, and so if people thought that I had been on the verge of crying, that was better than admitting the guilt I felt.

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Somewhere in junior high or high school, but more probably junior high school, I got hooked on counted cross-stitch.

It was in some ways my sister's fault, indirectly.  We were in Iowa on vacation, and she stopped into a Ben Franklin's (which is, I don't remember exactly, sort of a five and dime store with among other things a craft section) to pick up some cross stitch supplies.  I was in a "do what my big sister does" phase, so I got my own fabric and my own embroidery thread and decided I would do one of the patterns from her book, which I think was a collection of assorted flowers.

I don't know that I ever actually finished the rose that was my first ever project, but it started an addiction that kept on at least through college and beyond, stopping only when it became physically impossible.

There was something almost meditative about cross-stitch, something very soothing about the physical act of drawing an embroidery-threaded needle through canvas, an act that repeated over and over again in an orderly way, creating a thing of beauty out of a collection of different colors of threads.

I tried other forms of needlework, including the non-counted form of cross-stitch (where the image is printed onto the fabric, and you follow that as a guide rather than counting the number of squares on the chart), but nothing held my interest quite the same way that cross-stitch did.

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And then there is language stuff.

I have a long history of languages.  Over the years, I've taken at least six languages -- Spanish, Hebrew, French, German, Latin, and Russian.  The Spanish was because my early elementary years were in a Spanish immersion class; I quit because I was frustrated with myself, and my inability to produce a rolled R.  (I even had trouble with a regular American R, for which I took speech therapy in junior high, and regularly had people asking if I was from Chicago.)  The Hebrew was some sort of childhood Sunday school at the local temple -- religion is a thing I will talk about in the next few days -- but I don't remember why I quit.  French was another sort of childhood thing that I don't remember why I started, but I quit because my sister (who was older and had taken more French) was better at it than I was.

Then came junior high, and we had to choose a language: French, German, or Spanish.  I had already tried two of those, so I went with German, and took German all through high school until I was close to fluent.  Unfortunately I stopped studying it or using it much during college, and it sort of deteriorated to the point where I can't use it any more, having neither the grammatical knowledge necessary nor the vocabulary, but I still retain the sort of subconscious feel for it, as well as pronunciation.

Russian was college, which is another chapter of this thing that is not really a book.

And Latin was a summer course that I took at a local community college, a six-week course that I left one week early for because of another commitment, but still passed the final exam with a decent grade.  I don't remember the Latin per se, but it helped so much with understanding English and the Latinate roots, just as learning the subjunctive in German helped me understand the (dying) form of subjunctive in English -- if I were a rich man, etc. -- that I knew because my mother had drilled it in to me but didn't really understand why.

The other commitment that cut my Latin short was a German language summer camp out in Minnesota: two weeks of sort-of-immersion, along with arts and crafts and similar.  The place that offered it has several different languages to choose from, but I wanted German, and it was in fact my second year there.  However in the second case, the back-to-back nature of the two languages (Latin and German) meant that I had some pronunciation difficulties: a German w is pronounced v, but a Latin v is pronounced (at least in the form the class used) w, which led to an interesting moment when I tried to say "Wien" (Vienna, the capital of Austria), which went through my German filter to get Veen as the pronunciation, and then the Latin filter to get Ween.

A little embarrassing, but not as bad as the co-campmate who had just come from the Russian language camp, who had a lot of problems because ya is I in Russian and yes in German, so used frequently in both places.

Unrelatedly: Minnesota has, for the record, very enthusiastic mosquitos.  Large ones, too.  There is in fact a running joke that the mosquito is the state bird of Minnesota. Not true (technically it's the common loon), but it might as well be.

I did, however, get very good at catching them out of the air even before they landed.

Getting back to the memories

The next series of posts will be disjointed memories from junior high and high school, written in no particular order.

But first, I have a few pre-diagnosis memories that have surfaced since I "closed" that chapter.

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Memory: Going to the Monterey Bay Aquarium, multiple times, and being super obsessed with sea otters.  They have since been eclipsed by penguins as my favorite animal, but they are still well up there, because they are just so adorable.  And fuzzy.  I like fuzzy.

Memory: Wanting to paint the walls of my room.  My sister got to do it, so I thought I should too.  (Well, not to do the actual painting myself, but to have the walls painted my favorite color.)  The problem was that my sister's favorite color was yellow, and so the walls were painted a pale subtle yellow, the sort of color suited to a wall.  My favorite color, on the other hand, was bright vivid red, the color of fresh blood.  And a pale pink wouldn't do, because while pale yellow is still yellow, pale red is not red.  And vivid colors like that do not make good room colors.  My parents eventually convinced me that instead of painting the walls, I could just do red accessories: red curtains, red bedspread, read desk with a red chair and red lamp, red bookshelves, etc.

Memory: Being obsessed with origami, to the point where one of my birthday presents (when I was maybe ten or eleven) was someone coming to my birthday party to teach us how to make origami unicorns.  For Christmas I would get origami paper from Santa, and I remember being amazed that he knew what I wanted.  I got to the point where I could make several things from memory -- my favorites were a flower, fairly simple as far as origami stuff goes but still effective, and a frog that was set up to be able to hop.

Memory: An extended family gathering in Florida, probably for Christmas.  I remember grapefruit, cut in half, with sugar on it.  I also remember trying to teach my cousin, who may have been five or so at the time, how to do simple origami (like cranes and the flower mentioned above), except she didn't quite have the dexterity to get the corners precisely lined up (which is vital in origami) and so nothing turned out the way it should have, and she got upset and I felt bad about not being able to teach better.

Memory: Tidepooling at Point Reyes, something that happened multiple times but I mainly remember one particular time where I stepped on a sea anemone (which for the record I always want to spell "anenome", probably because of the "with fronds like these, who needs anemones" joke) or something similar and it squirted up my leg.  Wet jeans are entirely unpleasant, and I think I turned into a whiny miserable uncooperative brat at that point.

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One thing I haven't yet mentioned is that, just before all the medical hijinks started, we spent a year in England.  My father, who worked at the university, was on sabbatical, and we all came along.  I was slightly too young -- it was what would have been my 5th grade year, although I was younger than that since I had started school early and then skipped a grade, so I think I was 8 turning 9 -- to fully appreciate it, though as things turned out it was the best possible time to go, given what happened later.

I don't remember nearly as much as I would like to, but I do have flash memories.

Going to York, probably in spring, because the hillside was covered in bright yellow daffodils.

Going to Cornwall, and the narrow roads that were basically one lane but did traffic both directions, with stone walls on either side; going to Land's End, where you can look west across the ocean and see nothing but water, even though you know that somewhere far away is America.

The awkwardness of being in school and not having the same background of knowing the Kings and Queens of England that all the other kids did.  Though I did get a Ruler Ruler, which was pretty awesome.

Breaking a mirror, and being worried that it would give me seven years of bad luck.  Which gave me a slight amount of guilt when medical wackiness did start up, because it was obviously my fault.

Fireworks the day after my birthday, because of Guy Fawkes' Day (remember, remember the fifth of November...), which was much more awesome than fireworks in July.

Expressing admiration about a birthday present one of my friends gave me by describing it as "neat", which confused her because back home that was a term equivalent to awesome, but over there it just meant tidy.

Going to Dartmoor, and accidentally stepping in a river deep enough that water got into my boot and proceeded to make squelching sounds for the next while.

Getting scarlet fever when we were staying at a bed and breakfast, and the landlady brought me some fresh berries (blackberries, maybe) from her garden, and at one point my dad had to threaten to tie me down on the bed to get me to rest.

A writing exercise in school where I misspelt "beginning" as "beggining" because I remembered that it had a doubled letter from the base of "begin" but couldn't remember which.

Scones with clotted cream, which are the best thing ever and hard to get properly in America.

Having dinner at one of the ubiquitous Indian restaurants in London, while my mom's parents were visiting, and having the lamp hanging over the table break its chain and drop into the curry with a splat.

Going to the Tower of London, and the ravens there, and taking a tour where the tour guide's description of beheadings (possibly via guillotine, I don't remember) were enough to make me throw up.

That is not all of what I can remember from England, but a lot of the memories feel like they're closed behind a door -- I don't know how much is because I was young and not really paying attention to stuff, and how much is because my mind has sort of overcompensated for the parts of my life I don't want to remember by closing off more than necessary.

Interlude

Sorry for the brief gap in posts -- and for the temporary detour into the present -- but life has sort of intervened.  My sister had her baby last night, and my mom and I were able to drive down today and visit them for a while.

I'm looking forward to being an aunt (if a little insecure about whether or not she will like me, especially since I'm not exactly normal), and I kind of look forward to the "spoil rotten and then give back to mom" role that both aunts and grandparents have, but it's also raising a lot of feelings.

Here's the thing: I am never going to have kids.  Pregnancy is awkward for people with FOP, and anyway I really don't want to pass on the condition. That in itself could be solved with surrogacy, or adoption. but I also would not make a good mother.  Physically -- I can't care for myself, let alone an infant -- or financially, or mentally for reasons I haven't yet explored on this blog.

To a certain extent that whole thing is part and parcel of "life hasn't turned out the way I thought it would when I was five".  I'm not married, don't have a house, don't have a job, don't have kids, and it's all different. (Plus I didn't really see the FOP coming.). And to a certain extent I would quite possibly have chosen to not have kids even if I has been more normal.

But watching my sister interact with her new daughter -- watching my mom do grandmotherly things -- getting to hold a nice warm sleepy burrito baby -- I just kind of find myself yearning.

Sigh.

A primer on FOP

Let me start this by mentioning two very normal processes that happen in perfectly normal people.  You'll see why in a minute.

First, there is the formation of the skeleton in a developing fetus, and the development that continues through childhood.  Out of a single cell come many other cells, each with their own tasks; some form organs, some form skin, some form muscle, some form bone.  The skeleton starts as cartilage, building a framework for the structure that will form, and then it is replaced by bone as the fetus grows.  But the process is not random.  There are blueprints of a sort, that allow the developing bone to know what shape to grow in, so that one doesn't end up with a thighbone for a ribcage or a skull at the bottom of the leg.  And even after birth as the child grows, there are blueprints still in effect, dictating where growth will happen and how far it will go before stopping.

Second, there is the healing reaction when someone breaks a bone.  The simplified version of this is that the body knows to build new bone to seal off the break and make it whole again.  The longer, but still fairly broad, version is that the body forms a matrix of collagen matrix around the break, which then calcifies into bone.  (And if you've ever watched "Bones", a forensic pathology crime-solving show, you will hear frequent references to remodeling; this process turns the newly laid bone into mature bone, and can be used as a way to determine whether a break is relatively new or has had time to heal.)

Now.

Imagine the first process -- fetal development of a skeletal frame -- but without an off switch.  The skeleton develops normally at first, but then bone keeps growing.  And the blueprints provided by nature have run out, so there's no specific structure to build.  So the bone just gets attached haphazardly, like the creation of someone who buys a table from IKEA that comes with extra parts, decides that said extra parts must be included, and ends up with this.  (Fair disclaimer: The person who built those did so deliberately, using several separate kits to make a unique creation.)

Imagine the second process -- healing of fractured bone -- but instead of being triggered by a break in the skeleton, gets triggered by anything.  A fall, a cut, a bruise, or just on a whim.  And instead of being localized to that injury, it happens pretty much anywhere.  It could be on bone, broken or not.  It could be on muscle.  It could be on a tendon.

Imagine those two things, imagine them running rampant, and that is Fibrodysplasia Ossificans Progressiva.

Okay, so I don't know that it's the most scientifically accurate explanation.  But it's close.  And the broken bone analogy has proven useful to me as an explanation.  Doctors understand phrases like "spontaneous heterotopic ossification of connective tissue", but most other people will just tilt their heads and look blank and go "well, I recognized the word 'of'..."

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FOP -- the short form of Fibrodysplasia Ossificans Progressiva -- is a genetic condition, in most cases caused by a spontaneous mutation (rather than being carried as a recessive trait and inherited from carrier parents; if someone with FOP chooses to have a child there is, I believe, a 50% chance that the child will also have FOP, but most cases have genetically normal parents and no incidence of FOP elsewhere in the family.)  It is not something that you "get", but something that you are born with.

If you remember, in one of the first posts I mentioned that I was born with an abnormality in my big toes, which were short and bent inwards.  This is one of the key indicators of FOP, and the only one that can be observed before the condition kicks into gear developing new bone.  Many patients with FOP are affected early on; my situation, of a relatively normal childhood for the first ten years, is not unique but is not common.

Then again, nothing about FOP is common.  It is a rare condition: there are less than 300 known cases in the United States, roughly 800 worldwide, though for obvious reasons this doesn't count people who have it but have not been diagnosed.  And that rarity makes it difficult to diagnose, and difficult to research.

My own experience of having a cancer misdiagnosis is unfortunately one of the more common misdiagnoses.  When FOP flares up -- the hot, flushed, painful swellings that I experienced, which often leave behind some amount of new bone when they recede -- the developing bone can look like tumors.

And my experience of surgery is also common (for someone that has symptoms but has not been correctly diagnosed).  It is only natural to see something that does not belong in the body, whether a tumor or an odd piece of bone, and want to remove it.  But this is also one of the worst things you can do.  FOP flare-ups happen randomly, but they also happen in response to trauma.  With very liberal definitions of trauma -- intramuscular injections can even trigger a reaction, including immunizations and novocaine injections for dental work -- so it is no surprise that surgery will cause problems.

My experience of a first major problem being in the hip is not as common: while there is no specific or predictable pattern to FOP bone growth, it typically starts in the shoulder and back, and only later moves to the extremities.  But I think the bike accident was the trigger for the hip problems, the body responding (with unnecessary vigor) to trauma, and only then did I start getting the normal pattern of problem locations.

(I also suspect that the bone spurs in my hips and knees as a child, may have actually been FOP-related calcification along the tendons.  But there is no way to prove that, and it hardly matters anyhow.)

It is not in itself fatal; organs are spared the ossification process, as are the diaphragm, tongue, eyes, and facial muscles (though the jaw can fuse in place).  However, falling is extremely dangerous -- there is often no way to break one's fall, no way to cushion it, no way to absorb the shock -- as well as a high likelihood event, since partial or complete fusion of joints can affect a person's balance.  Pneumonia (and other lung conditions) are also deadly -- the rib cage is often completely fused, and while the diaphragm serves to allow breathing, there is diminished lung capacity and less ability to cough.

If you would like more information about FOP, I suggest the website for the International FOP Association (IFOPA), in particular the page on FOP symptoms (which includes visuals of the toe malformation), the FOP FAQ, and the page on the FOP Skeleton (Harry Eastlack, who donated his skeleton to science for research into this condition).

And that's enough info-dumping for now.  Tomorrow I'll get back to the more personal stuff.

Diagnosis

You will notice, in most if not all of these posts, that phrases along the lines of "I don't remember" crop up quite frequently.  There are two reasons for this.  One is that I am basing what I write here purely on my own memories, and not doing any research that involves other people (such as my parents, who I'm sure remember more, or digging up medical history earlier than what's readily available online).

The other is that, well, I don't remember.  There are a lot of things I don't remember.

Some of that is time; it's been almost twenty years since I graduated high school, so it's not like these things happened yesterday.  But then again, a lot of people seem to remember a lot more about junior high and high school than I do.

Some of that, I'm sure, is my brain blocking out painful memories.  Because nothing about my medical adventures were particularly fun (except maybe the oreo cookies and milk that I got to have as dessert in the Children's Hospital).  And even when I wasn't actively dealing with medical issues, navigating junior high and high school while having ongoing medical crises that the doctors couldn't figure out?  The whole period of time was probably traumatic at best, and I can imagine my brain doing this whenever I try to think back on it.

And I'm sure there was also a lot of denial or lack of understanding at the time.  In some sense, wacky medical stuff was perfectly normal for me.  I didn't have any experience of doing junior high without it.  And in some sense, I didn't grok the full implications of what was going on.  And probably my brain was already doing the nopetopus dance about some of it.

So I apologise for the holes, and for the vagueness, and for any inaccuracies there might be.  Soon I will go back to the format of random memory fragments, another jigsaw puzzle for another era of my life.  But for now, I need to finish the wacky medical hijinks, or at least the diagnosis part, because that's sort of important.

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I can't quite remember (there's that phrase again!) exactly why we ended up going to Mayo Clinic.  I'm sure it was medical weirdness, but I can't quite remember.  I know at some point, subsequent to the hip release surgery, my left hip contracted back up again.  I know at some point it locked permanently in that position -- the one that sometimes shows up in posed photographs, where the person's weight is on one leg and their other leg is canted up and forwards with the foot on tiptoe -- because I remember working out a way to balance on my right leg and bend over, left leg extending behind me like a lever, so that I could still reach the floor, and I remember thinking "if this is as bad as it gets, it's not so bad, I can manage this fine."

(I was an optimistic little kid about this whole thing.  There was one time, I think in high school, that a teacher came up to me with tears in her eyes about how inspirational I was for what I was going through and for always being so cheerful about it all.  I felt awkward and embarrassed and didn't know what to say, in no large part because I wasn't choosing to be cheerful, nor was it a mask I was putting on for the benefit of other people; that's just how I was, how I felt.)

I know at some point, I started developing inexplicable swellings, mostly on my back and neck, hot and tight and painful and without obvious cause, that would then disappear with just as little cause.  I know at some point my spine and neck started stiffening up, so that it was harder for me to turn my head or raise it or exert the flexibility that vertebrae normally have.

I don't know which out of all these things happened before Mayo Clinic and which happened after.  I just know that there was some reason why the doctors said, essentially, "There is something weird going on here and we can't figure it out."

Mayo Clinic is where -- three or so years after the first contracture that started the whole process, after all the tests and MRIs and cat scans, after the biopsy to see what kind of cancer I had and the surgery and chemotherapy to treat what they thought it was -- they finally eventually were able to diagnose me correctly.

And it wasn't cancer at all.

It was something very different: Fibrodysplasia Ossificans Progressiva.