i'm not saying i'm replacing love with some other words
For the past seven years I have been a medical experiment. That's what psychiatry is, if you're going to be technical about it. Sure, the DSM-IV gives guidelines, but most psychiatric patients aren't textbook models by any case (myself included). So you let the doctors flip the book open, jab their fingers into a diagnosis, and attempt to titrate you a solution. I've taken more pills in the last seven years than I did in the previous fifteen. I've been in and out of hospitals where they took my shoes, my music, my pens - everything I thought defined me.
Only to discover what I already knew was true - they cannot cure me. Everything is a stop-gap measure and I have to fight against time. At some point the high levels of anti-psychotics will probably break down my fine motor movements, at some point the current combination of meds will stop working, at some point someone is going to look at me and tell me they can't do any more.
Does it scare me? It scares the hell out of me. Even on the days I'm the happiest, when I'm writing my novel or reading for hours or just giggling like a maniac because someone mentioned Summer Glau, it's still there. It literally lives in my brain.
Truly enough, I have outlived my own expectations. I never expected to graduate from high school. Never in a million years did I expect that I would not only graduate, but go onto a great university, earn a degree, and fall in love several times over with "my kids." Somehow I've become a role model for my sister. Somehow I retained my love of words and music. Somehow I'm still able to drive a car, live on my own, and get mad when I realize they're showing reruns on TV. Somehow I dare to dream that someday I will have a meaningful job and a family.
All of which is more than most medical professionals dared to give me.
But psychiatric illness has taken so much away from me that it's enough to bring me to tears if I think about it for too long. I was a happy, carefree kid who loved other people and showing off... now I am a shy, easily-embarrassed adult who keeps her headphones on when possible to block out the noises of other people. I used to love learning - now it's just become difficult for me. As I've gotten older I've acquired shaky hands, a blank mind, the inability to sleep, bleeding lips, hundreds of scars, and countless tics and "stims." Mental illness made me question my faith, to the point where I'm not so sure where I stand anymore. Mental illness took away my hopes for several different careers - I wouldn't be able to get through the required courses.
Sometimes I wonder if it would be easier if I had a disease with specific symptoms. I want a name. They've given me a diagnosis but it doesn't mean anything to me, it doesn't help my pantheon of medical professionals treat me, and it doesn't give me any hope for a cure. But then again, nothing is easy.
The real point of this entry is this - I am jealous of the people around me, insanely jealous sometimes, so jealous that it repulses me sometimes. I am jealous of people who are better writers or musicians or artists than me, people who can put their feelings and thoughts down perfectly into songs or poems or stories or pictures, because I cannot do that. I write poems and stories but they're often not what I want to say. I hammer away at the piano but I'm just a mimic, spooling Bach or Mozart because I learned it rote.
Some of the people I'm jealous of make me feel ridiculous. C, whom I work for, who I count as a friend - I am jealous of her. She has a trach and is attached to a ventilator and uses a wheelchair and has to deal with a constant parade of nurses and aides hopping in and out of her life, plus about a million more things I probably have no idea about - but I am still jealous of her. I'm jealous of the easy way she has with people, the wonderful songs and poetry and stories she writes, the fact that she seems to make friends quickly, and the way she's so secure in her faith. Sometimes when I'm around her I feel like I'm the dumb cousin that someone accidentally invited to the party and no one wants to ask to leave because it would be embarrassing. I feel like everything I do is awful, that nothing I do will ever compare to the things I see and hear her accomplish.
My sister recently posted on her Facebook page that I am her inspiration, and it breaks my heart because I don't know what I've done to deserve it. From the time she's been able to she's adored me. She adored me through high school, when I was so bottomed out that everything took too much effort... she adored me through everything I've gone through in college. She begs me to write things for her, she listens to the same music I do, she's happiest if we're in the car going somewhere. And most of the time she's adored me I've been a complete bitch about it. I haven't known how to be grateful for the things I have, and for the things I've showed her. It makes my hands sweaty because I want to be the kind of person who's an inspiration but when I look at myself all I see is failure. She loves me so purely that it makes me embarrassed that I ever cut myself, that I ever thought about killing myself, that I ever yelled at her or pinched her or told her I was too busy.
The only time I'm not jealous of someone else, when I don't regret every single medical experiment leading up to the present, is when I'm loving "my kids." When I'm with Julia it doesn't matter what the doctors say, because she doesn't understand that. It doesn't matter that I have scars, because she can't see them. It doesn't matter that I can't write poetry or create songs, because if I know the words to "Jingle Bells" and am willing to tap out the beats on her back she'll laugh. It doesn't matter that I hate the way I look and the Aspie way I can't make friends and the way I'm so damn alone. Everything I do is perfect for her. And she loves me without question, without expecting anything in return. Without asking me for anything she makes me want to be a bigger person. People look at her and see so much imperfection, and yet she makes me feel beautiful.
I don't want to be someone I'm not. I just want to be the person I know I am all the time. I had to fight so hard to get here that I should never, ever question my motives or what I'm doing here, but just because I shouldn't doesn't mean I won't.
And now it's over. A wave of self-hatred and pity sweeps me from now and then, breaks me down, makes me cry, and I write and sob until I'm done - which is now. Now I'm clean. I'm going to get up and finish my book and take my meds, and for ten hours or so I'm going to be sleeping and dreaming, and when I wake up the things that are supposed to matter will have come back in focus, and maybe I'll laugh about something on my way to work or really find my words while writing fanfic... whatever it is, tomorrow will be a better day. Funny how that works.
And now I can even make a joke about it - my parents used to pay $76.41 for an hour of this... and yet when I'm alone it's free. Who needs therapy? (Well, obviously, me... but we won't get into that.) But here's one thing I did learn at my wasted therapy: positive reinforcements.
I am not perfect. I will never be perfect. I'll be lucky if I can come within a stone's throw of "pretty good." There's a lot wrong with me. But it would be such a waste if I did nothing with the everything that I fought so hard to get. And if I am an amazing person in my sister's eyes because I can drive a car or because I can program electronics or because I can make her laugh or just because I'm the one person in her life who doesn't judge her, who am I to turn that down? Some people live their whole lives without finding someone who adores them - I am blessed to have parents who love me, a sister who adores me, friends who think I'm funny, and a whole bunch of "kids" who make my life worth living.
And if the price I pay for that is 14 pills a day and a once-in-awhile sob-and-angry-write fest, then I'm a damn lucky girl.
Only to discover what I already knew was true - they cannot cure me. Everything is a stop-gap measure and I have to fight against time. At some point the high levels of anti-psychotics will probably break down my fine motor movements, at some point the current combination of meds will stop working, at some point someone is going to look at me and tell me they can't do any more.
Does it scare me? It scares the hell out of me. Even on the days I'm the happiest, when I'm writing my novel or reading for hours or just giggling like a maniac because someone mentioned Summer Glau, it's still there. It literally lives in my brain.
Truly enough, I have outlived my own expectations. I never expected to graduate from high school. Never in a million years did I expect that I would not only graduate, but go onto a great university, earn a degree, and fall in love several times over with "my kids." Somehow I've become a role model for my sister. Somehow I retained my love of words and music. Somehow I'm still able to drive a car, live on my own, and get mad when I realize they're showing reruns on TV. Somehow I dare to dream that someday I will have a meaningful job and a family.
All of which is more than most medical professionals dared to give me.
But psychiatric illness has taken so much away from me that it's enough to bring me to tears if I think about it for too long. I was a happy, carefree kid who loved other people and showing off... now I am a shy, easily-embarrassed adult who keeps her headphones on when possible to block out the noises of other people. I used to love learning - now it's just become difficult for me. As I've gotten older I've acquired shaky hands, a blank mind, the inability to sleep, bleeding lips, hundreds of scars, and countless tics and "stims." Mental illness made me question my faith, to the point where I'm not so sure where I stand anymore. Mental illness took away my hopes for several different careers - I wouldn't be able to get through the required courses.
Sometimes I wonder if it would be easier if I had a disease with specific symptoms. I want a name. They've given me a diagnosis but it doesn't mean anything to me, it doesn't help my pantheon of medical professionals treat me, and it doesn't give me any hope for a cure. But then again, nothing is easy.
The real point of this entry is this - I am jealous of the people around me, insanely jealous sometimes, so jealous that it repulses me sometimes. I am jealous of people who are better writers or musicians or artists than me, people who can put their feelings and thoughts down perfectly into songs or poems or stories or pictures, because I cannot do that. I write poems and stories but they're often not what I want to say. I hammer away at the piano but I'm just a mimic, spooling Bach or Mozart because I learned it rote.
Some of the people I'm jealous of make me feel ridiculous. C, whom I work for, who I count as a friend - I am jealous of her. She has a trach and is attached to a ventilator and uses a wheelchair and has to deal with a constant parade of nurses and aides hopping in and out of her life, plus about a million more things I probably have no idea about - but I am still jealous of her. I'm jealous of the easy way she has with people, the wonderful songs and poetry and stories she writes, the fact that she seems to make friends quickly, and the way she's so secure in her faith. Sometimes when I'm around her I feel like I'm the dumb cousin that someone accidentally invited to the party and no one wants to ask to leave because it would be embarrassing. I feel like everything I do is awful, that nothing I do will ever compare to the things I see and hear her accomplish.
My sister recently posted on her Facebook page that I am her inspiration, and it breaks my heart because I don't know what I've done to deserve it. From the time she's been able to she's adored me. She adored me through high school, when I was so bottomed out that everything took too much effort... she adored me through everything I've gone through in college. She begs me to write things for her, she listens to the same music I do, she's happiest if we're in the car going somewhere. And most of the time she's adored me I've been a complete bitch about it. I haven't known how to be grateful for the things I have, and for the things I've showed her. It makes my hands sweaty because I want to be the kind of person who's an inspiration but when I look at myself all I see is failure. She loves me so purely that it makes me embarrassed that I ever cut myself, that I ever thought about killing myself, that I ever yelled at her or pinched her or told her I was too busy.
The only time I'm not jealous of someone else, when I don't regret every single medical experiment leading up to the present, is when I'm loving "my kids." When I'm with Julia it doesn't matter what the doctors say, because she doesn't understand that. It doesn't matter that I have scars, because she can't see them. It doesn't matter that I can't write poetry or create songs, because if I know the words to "Jingle Bells" and am willing to tap out the beats on her back she'll laugh. It doesn't matter that I hate the way I look and the Aspie way I can't make friends and the way I'm so damn alone. Everything I do is perfect for her. And she loves me without question, without expecting anything in return. Without asking me for anything she makes me want to be a bigger person. People look at her and see so much imperfection, and yet she makes me feel beautiful.
I don't want to be someone I'm not. I just want to be the person I know I am all the time. I had to fight so hard to get here that I should never, ever question my motives or what I'm doing here, but just because I shouldn't doesn't mean I won't.
And now it's over. A wave of self-hatred and pity sweeps me from now and then, breaks me down, makes me cry, and I write and sob until I'm done - which is now. Now I'm clean. I'm going to get up and finish my book and take my meds, and for ten hours or so I'm going to be sleeping and dreaming, and when I wake up the things that are supposed to matter will have come back in focus, and maybe I'll laugh about something on my way to work or really find my words while writing fanfic... whatever it is, tomorrow will be a better day. Funny how that works.
And now I can even make a joke about it - my parents used to pay $76.41 for an hour of this... and yet when I'm alone it's free. Who needs therapy? (Well, obviously, me... but we won't get into that.) But here's one thing I did learn at my wasted therapy: positive reinforcements.
I am not perfect. I will never be perfect. I'll be lucky if I can come within a stone's throw of "pretty good." There's a lot wrong with me. But it would be such a waste if I did nothing with the everything that I fought so hard to get. And if I am an amazing person in my sister's eyes because I can drive a car or because I can program electronics or because I can make her laugh or just because I'm the one person in her life who doesn't judge her, who am I to turn that down? Some people live their whole lives without finding someone who adores them - I am blessed to have parents who love me, a sister who adores me, friends who think I'm funny, and a whole bunch of "kids" who make my life worth living.
And if the price I pay for that is 14 pills a day and a once-in-awhile sob-and-angry-write fest, then I'm a damn lucky girl.