musings on change (and lack thereof)
Dec. 12th, 2010 04:45 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
ysobelWhen I was a kid, I was normal.
No, scratch that; I wasn't really. I loved books, I loved school, I loved math, I loved science, I loved languages, I loved fantasy. And I was far from the perfect kid; I was painfully shy and quiet, I was a complete and utter overachiever, I was resentful of my older sister for being allowed more freedom and more fun stuff, I was a brat at times, I had a messy room that I never managed to get fully organized ever ... but I was for the most part normal. Whatever 'normal' is.
And then came junior high, and high school. My memory of those times is pretty much nonexistant, which I suspect is a defense mechanism because a) JH and HS tend to suck, and b) that was when the physical shit kicked in; when my left leg contracted up, when I had a biopsy surgery and then later a second surgery to cut the problematic muscle, when it took them several years and several hospitals to figure out what was wrong, when I was dealing with junior high shit at the same time as I was /undergoing chemo/ for the cancer they thought I had...
I don't remember much. I remember my orthopedic surgeon; he was a nice man. I remember some of the classes I took. And I know, looking back on it now, that I was anything but normal. I didn't have the same sort of teenage rebellion that my sister did; I didn't have interest in boys (which was a combination of things, of being young and of having the medical stuff that was probably fucking with my hormones and of not being aware of the concept that girls could be attracted to girls) so was pretty much asexual, didn't have a social life... I got home from school, I did my homework quickly so I would be allowed to watch ST:TNG reruns when they came on at 5, I had dinner, I went to bed.
And from what I remember, I was -- coping, at least, and happy when I had the energy for it. There were people probing me to make sure I wasn't depressed, which I realize now is what they were doing, but then it was just baffling -- why would I be angry? it was so much easier to be cheerful. and what could I say to the people who told me I was an Inspiration, how I was dealing with all this? I wasn't doing anything special. I was just me.
And yeah, I had to use a wheelchair for high school because the campus was big enough that I couldn't walk from class to class in the time allotted between periods; yeah, I used a cane at home, because the way my left leg was (with increasing limitations on how much I could use it) I didn't have great balance because I couldn't put my foot flat on the floor.
But I remember thinking, at one point: this isn't too bad. Okay, I'm not going to be super flexible, and I'm always going to walk funny, and I'll only be able to bend over by having my left leg swing up behind me and rely on my right leg for balance, but that isn't too bad. (The times when I had hot swollen flare-ups in my upper back that couldn't stand to have anything touching them so I had to catch what sleep I could sitting up in a beanbag chair ... well, that wasn't fun, but those passed.)
I also remember hearing my mom tell someone about FOP, and about how people ended up unable to move anything except for their fingers; and I remember being utterly shocked; and I remember being reassured that that was only the extreme cases so I shouldn't worry about this.
(My parents have different memories from this period of my life. I can't speak for them, nor can I speak for the truth of what actually happened. I can only say what I remember.)
And I went to college, and I had a motorized wheelchair for the first time (I was given the choice between that and a scooter, and chose the wheelchair because it was cooler and less old-person-y), and I had increasing immobility but I could still do stuff. I could still write, I could still play the violin (and, when my sister got one for me for my birthday, harp), I could reach for things, I could dress myself, I could eat, I could go to the bathroom, I could manage a backpack full of books, I could do cross-stitch, I could knit, I could take notes during lecture, I could shower, I could walk a little bit with the little cane I had, I could even do something approximating dancing when I needed keep-myself-awake breaks during the occasional all-nighter ... I couldn't bend to touch the floor, but I had grabbers, and I was self-sufficient.
I don't remember an isolated incident of thinking "this is okay, I can live with this", but that's more or less what was going on. Yes, the wheelchair and the disability would cause some amount of problem in the workplace, but I was bright enough to make up for it.
But somewhere in there, things went wrong in my head. Flunking organic chem (or, rather, withdrawing at the last possible moment because I was getting 0's in everything and a W was better than an F on the transcript) didn't help; the general atmosphere of changing from high school to college (and not just any college, I had to go and overachieve again and go for a school where *everyone* was smart and most of them were smarter than I was) didn't help; the car accident (my parents and I were on our way back from seeing Shakespeare in Love and got t-boned by someone flying through a stop sign at ~30mph; van was totaled, none of us were seriously injured but somewhat shaken and hello whiplash) didn't help; the fact that the subset I had chosen for my major had classes that were basically graduate-level didn't help.
The fact that I really didn't deserve the degree I got, because the only reason I got through the (graduate-level) classes for my major was because of one of the faculty members in that department (who also happened to be the Resident Faculty in my dorm) knew about the car accident and took pity on me and talked some of his fellow professors into giving me a grade even though I hadn't done all of the work (even though the problem was my increasing depression, not anything from the car accident)? Also doesn't help.
Deserving or not, I graduated, and looked for a job, except I was looking to work in web development stuff where I didn't have a degree that was obviously related and I didn't have any experience and the job market had a glut of people who had been part of internet startups that collapsed (this was 1999 and onwards) and so here I was, young and female and disabled and inexperienced (both in the sense of not knowing what I was doing and in the sense of not having X years working in the field) and seriously clueless (not to mention shy and somewhat depressed), competing against able-bodied people with job experience and a lot more ego than I had.
That was eleven years ago.
I don't know how I got where I am now, but I know it was a long slow inevitable slide. Physically and mentally both, locking up bits at a time, decaying. Becoming who I am now.
I don't have a job. I probably won't ever have one -- for one thing, the benefits (including my dad's health insurance) that I qualify for are dependent on me not having a job or any serious income; for another, I am no more experienced than I was eleven years ago, I've had a decade of stagnation, and I have so many more physical limitations that would need accommodating.
I can't take care of myself. Some of this is mental: I forget to eat, or remember I need food but can't decide what to make so I end up with nothing. I forget appointments, and yes I know that a calendar would help but I either forget to put things on the calendar or forget to take it with me when I go out or forget to look at what I'm supposed to be doing. I forget ... I forget what all I forget.
And a lot of it is physical. I have what are essentially forks and spoons glued onto a long plastic bar, and I have long plastic straws, so I can eat and drink, more or less, but only if someone sets it up for me, and I can't prepare food, I can't even get things out of the fridge or off shelves, because I can't reach. I can't go to the bathroom on my own, which also means that my schedule is tied to the availability of other people, and their willingness, and their competence. (I've had aides say "I have a flat tire, I won't be there" and so I had to just metaphorically cross my legs for another three hours. I've had aides that I could not for the life of me get to wipe me clean enough, which means when they're on duty I can't have bowel movements until a decent competent aide is available.) I can't drive, any more (there are systems, but they are expensive, more so even than the minivans they get installed in, but I can't afford them, and I can't save up), which means if I want to go somewhere I have to arrange for a driver, or arrange for paratransit (and make sure I have money), or walk if the weather's okay enough. But I can't put on a coat or scarf or hat, I can't hold an umbrella, I can't even really put on my own gloves any more. I can't use a phone except for on speakerphone, which is bad sound quality and no privacy. I can't put on headphones myself, or take them off, which means I don't listen to music as often as I want to, and sleep with earbuds in because if I can't sleep I need music and it's not worth waking roommates up to put freaking earbuds in at 2am when I can't sleep. I can't ... I can't do /anything/.
(And the one thing I /can/ still physically do, namely writing? I've forgotten how to enjoy it. I've forgotten how to have fun. I can string together sentences perfectly fine, but I can't tell stories any more. I can't make up worlds. I try, and it falls apart, and I hate it, and I give up in despair.)
I will always be dependent on people for every fucking little thing in my life, and it will never get better.
And I think there has been a subconscious part of me that has been hoping, against all rationality, that it would. That if I just endured long enough, it would get better (maybe because that's what bodies do, right?).
It won't.
I won't ever get back what I lost. The time, or the mobility, or the coping.
Any of it.
It won't get better.
It won't ever get better.
Hope thrives on the possibility of better. If I don't have that, how can I have hope?
...about anything?
No, scratch that; I wasn't really. I loved books, I loved school, I loved math, I loved science, I loved languages, I loved fantasy. And I was far from the perfect kid; I was painfully shy and quiet, I was a complete and utter overachiever, I was resentful of my older sister for being allowed more freedom and more fun stuff, I was a brat at times, I had a messy room that I never managed to get fully organized ever ... but I was for the most part normal. Whatever 'normal' is.
And then came junior high, and high school. My memory of those times is pretty much nonexistant, which I suspect is a defense mechanism because a) JH and HS tend to suck, and b) that was when the physical shit kicked in; when my left leg contracted up, when I had a biopsy surgery and then later a second surgery to cut the problematic muscle, when it took them several years and several hospitals to figure out what was wrong, when I was dealing with junior high shit at the same time as I was /undergoing chemo/ for the cancer they thought I had...
I don't remember much. I remember my orthopedic surgeon; he was a nice man. I remember some of the classes I took. And I know, looking back on it now, that I was anything but normal. I didn't have the same sort of teenage rebellion that my sister did; I didn't have interest in boys (which was a combination of things, of being young and of having the medical stuff that was probably fucking with my hormones and of not being aware of the concept that girls could be attracted to girls) so was pretty much asexual, didn't have a social life... I got home from school, I did my homework quickly so I would be allowed to watch ST:TNG reruns when they came on at 5, I had dinner, I went to bed.
And from what I remember, I was -- coping, at least, and happy when I had the energy for it. There were people probing me to make sure I wasn't depressed, which I realize now is what they were doing, but then it was just baffling -- why would I be angry? it was so much easier to be cheerful. and what could I say to the people who told me I was an Inspiration, how I was dealing with all this? I wasn't doing anything special. I was just me.
And yeah, I had to use a wheelchair for high school because the campus was big enough that I couldn't walk from class to class in the time allotted between periods; yeah, I used a cane at home, because the way my left leg was (with increasing limitations on how much I could use it) I didn't have great balance because I couldn't put my foot flat on the floor.
But I remember thinking, at one point: this isn't too bad. Okay, I'm not going to be super flexible, and I'm always going to walk funny, and I'll only be able to bend over by having my left leg swing up behind me and rely on my right leg for balance, but that isn't too bad. (The times when I had hot swollen flare-ups in my upper back that couldn't stand to have anything touching them so I had to catch what sleep I could sitting up in a beanbag chair ... well, that wasn't fun, but those passed.)
I also remember hearing my mom tell someone about FOP, and about how people ended up unable to move anything except for their fingers; and I remember being utterly shocked; and I remember being reassured that that was only the extreme cases so I shouldn't worry about this.
(My parents have different memories from this period of my life. I can't speak for them, nor can I speak for the truth of what actually happened. I can only say what I remember.)
And I went to college, and I had a motorized wheelchair for the first time (I was given the choice between that and a scooter, and chose the wheelchair because it was cooler and less old-person-y), and I had increasing immobility but I could still do stuff. I could still write, I could still play the violin (and, when my sister got one for me for my birthday, harp), I could reach for things, I could dress myself, I could eat, I could go to the bathroom, I could manage a backpack full of books, I could do cross-stitch, I could knit, I could take notes during lecture, I could shower, I could walk a little bit with the little cane I had, I could even do something approximating dancing when I needed keep-myself-awake breaks during the occasional all-nighter ... I couldn't bend to touch the floor, but I had grabbers, and I was self-sufficient.
I don't remember an isolated incident of thinking "this is okay, I can live with this", but that's more or less what was going on. Yes, the wheelchair and the disability would cause some amount of problem in the workplace, but I was bright enough to make up for it.
But somewhere in there, things went wrong in my head. Flunking organic chem (or, rather, withdrawing at the last possible moment because I was getting 0's in everything and a W was better than an F on the transcript) didn't help; the general atmosphere of changing from high school to college (and not just any college, I had to go and overachieve again and go for a school where *everyone* was smart and most of them were smarter than I was) didn't help; the car accident (my parents and I were on our way back from seeing Shakespeare in Love and got t-boned by someone flying through a stop sign at ~30mph; van was totaled, none of us were seriously injured but somewhat shaken and hello whiplash) didn't help; the fact that the subset I had chosen for my major had classes that were basically graduate-level didn't help.
The fact that I really didn't deserve the degree I got, because the only reason I got through the (graduate-level) classes for my major was because of one of the faculty members in that department (who also happened to be the Resident Faculty in my dorm) knew about the car accident and took pity on me and talked some of his fellow professors into giving me a grade even though I hadn't done all of the work (even though the problem was my increasing depression, not anything from the car accident)? Also doesn't help.
Deserving or not, I graduated, and looked for a job, except I was looking to work in web development stuff where I didn't have a degree that was obviously related and I didn't have any experience and the job market had a glut of people who had been part of internet startups that collapsed (this was 1999 and onwards) and so here I was, young and female and disabled and inexperienced (both in the sense of not knowing what I was doing and in the sense of not having X years working in the field) and seriously clueless (not to mention shy and somewhat depressed), competing against able-bodied people with job experience and a lot more ego than I had.
That was eleven years ago.
I don't know how I got where I am now, but I know it was a long slow inevitable slide. Physically and mentally both, locking up bits at a time, decaying. Becoming who I am now.
I don't have a job. I probably won't ever have one -- for one thing, the benefits (including my dad's health insurance) that I qualify for are dependent on me not having a job or any serious income; for another, I am no more experienced than I was eleven years ago, I've had a decade of stagnation, and I have so many more physical limitations that would need accommodating.
I can't take care of myself. Some of this is mental: I forget to eat, or remember I need food but can't decide what to make so I end up with nothing. I forget appointments, and yes I know that a calendar would help but I either forget to put things on the calendar or forget to take it with me when I go out or forget to look at what I'm supposed to be doing. I forget ... I forget what all I forget.
And a lot of it is physical. I have what are essentially forks and spoons glued onto a long plastic bar, and I have long plastic straws, so I can eat and drink, more or less, but only if someone sets it up for me, and I can't prepare food, I can't even get things out of the fridge or off shelves, because I can't reach. I can't go to the bathroom on my own, which also means that my schedule is tied to the availability of other people, and their willingness, and their competence. (I've had aides say "I have a flat tire, I won't be there" and so I had to just metaphorically cross my legs for another three hours. I've had aides that I could not for the life of me get to wipe me clean enough, which means when they're on duty I can't have bowel movements until a decent competent aide is available.) I can't drive, any more (there are systems, but they are expensive, more so even than the minivans they get installed in, but I can't afford them, and I can't save up), which means if I want to go somewhere I have to arrange for a driver, or arrange for paratransit (and make sure I have money), or walk if the weather's okay enough. But I can't put on a coat or scarf or hat, I can't hold an umbrella, I can't even really put on my own gloves any more. I can't use a phone except for on speakerphone, which is bad sound quality and no privacy. I can't put on headphones myself, or take them off, which means I don't listen to music as often as I want to, and sleep with earbuds in because if I can't sleep I need music and it's not worth waking roommates up to put freaking earbuds in at 2am when I can't sleep. I can't ... I can't do /anything/.
(And the one thing I /can/ still physically do, namely writing? I've forgotten how to enjoy it. I've forgotten how to have fun. I can string together sentences perfectly fine, but I can't tell stories any more. I can't make up worlds. I try, and it falls apart, and I hate it, and I give up in despair.)
I will always be dependent on people for every fucking little thing in my life, and it will never get better.
And I think there has been a subconscious part of me that has been hoping, against all rationality, that it would. That if I just endured long enough, it would get better (maybe because that's what bodies do, right?).
It won't.
I won't ever get back what I lost. The time, or the mobility, or the coping.
Any of it.
It won't get better.
It won't ever get better.
Hope thrives on the possibility of better. If I don't have that, how can I have hope?
...about anything?
no subject
Date: 2010-12-13 12:58 am (UTC)no subject
Date: 2010-12-13 01:43 am (UTC)maybe look for contentment and joy instead of hope? i have different limitations that you; i can get around the house and make food and feed myself most of the time, but i can't go out but very rarely, can't be around people since the products most of them use trigger seizures, can't have friends over, etc.
so i get it. and yeah, there are no cures for mcs and cfids and all the autoimmune crap, so barring a miracle (which i *would* like oen of), there's no hope that i'll get physically better.
so i've learned to look for the things i can do when i can do them and to look for contentment (even if it's in small doses) and look for things that bring joy (watching the cats play, sitting in the sun, dong something that gives someone else joy), and those help me a lot.
it's far to easy for me to focus on what i can't do, which is most things, adn it's HARD to focus on the good, but it goes a long ways to helping me feel joyful and good insteadof deepressed and bad, too.
i hope you find a way that works for you. i <3 you.
no subject
Date: 2010-12-13 02:17 am (UTC)no subject
Date: 2010-12-13 02:28 am (UTC)no subject
Date: 2010-12-13 04:32 am (UTC)and if nothing else, consider yourself snuggled. you are extraordinary.
no subject
Date: 2010-12-13 03:25 pm (UTC)no subject
Date: 2010-12-14 02:23 pm (UTC)no subject
Date: 2010-12-23 04:42 am (UTC)Love you.
Glad to know you. Be a friend.
I wanted to say about hope though, this is how it is for me... my hope doesn't rely on physical health, my hope is that life will get better. Better is an emotional state - better is happier, happier could be caused by physical health but it can also happen just because things are better emotionally. For me, I based my hope on that. And I know you have mental health crap that I don't that you have to deal with, I'm not saying you should feel like me! I'm just saying how it is for me.
*more hugs*