First: Linda has written about my now being a patient of Seattle world health center here, Cheryl adds her view here of my medical progress. Linda adds another post to A Girl’s Gotta Fly, I haven’t read any of them, they asked me not to.
My turn:
Have you ever stood on a painted line while people picked teams, and known that you weren’t going to be picked, at least not until the very end when your lack of coordination would be publicly discussed?
“You take her and I’ll take the one with the squint.”
Yes, a life not so much chosen as what was negotiated as a consolation prize.
These days I have that feeling, where I used to go to libraries and coffee shops so people wouldn’t be able to see it so obviously. I was alone. I am alone. Not the solitude of needing “time alone” but the aching in the bones that whatever it was that drew people together, I didn’t have it. Or I had it in abundance but it didn't work for me. When people went for drinks for after work, I wasn’t invited; when my ‘friends’ who were in fact just the people who would talk to me, whom I had elevated to the idealist term of “friends” had a birthday party I wasn’t invited. There was something different about me.
I am sure being part of a culty religion didn’t help.
I used to hike between midnight and 4 am up in the San Gabriel Mountains, following the paths I knew with no light, no provisions, no need but to get above the city, and see it, those millions of souls. I was 17, 18, 19. I don’t think my parents cared where I was, in that as long I was properly dressed and the house was clean for Friday night, then what did it matter if I performed sleep deprivation experiments on myself in my bedroom or simply didn’t come in. They KNEW that I would not be at a party, not drinking. I used to walk at night past the houses, catching that second flash of people who seemed connected doing things.
I did things that no one had every done intellectually and instead of making me popular with anyone even teachers, I was isolated instead. I spent two years of high school largely by myself. Left in the morning to figure out Calculus by myself because I had passed the books and teaching the Teacher on loan from the university had. The afternoon I put out the school newpaper. Of course, we didn’t just break the record for putting out the paper, I broke it by 8 times more than on record.
I spent my time focused to the extent that many immigrants would understand, working till the minute I needed to leave and cycle to university. Or cycling from working at school right to work. At 18 and 19, I was the last to leave work, doing the regular work as well as the company bookkeeping. At my college after auditing the second year of English lit (in seven essay tests, taken over three nights), I took seven consecutive courses which started at 7:00 am in the morning and finished at 10:00 pm crammed into two days. I did my homework on my work lunch break. I had no friends. I had no one who would talk to me.
I’m not going blow by blow through my university education, but lets say that I was always accepted on my transcripts but once I appeared no one wanted to be my mentor, or teachers. At my masters, after one semester exposure to me they couldn’t find anyone INCLUDING the director of the program who would be my first advisor much less my second.
I had gone to the masters program from an isolated teaching practicum. It resulted in my mental breakdown, an “internal” investigation of hired but not monitored invigilator for the student teachers on the grounds of sexual and other misconduct which gave us that survived to the end, blank checks to do it anywhere we wanted free of change.
Most of my life, in one way or another, there has been a passive to outright aggression, simply because I exist. And this disease/disability has changed none of this. I found out today that the Beacon Nurse is telling new worker to ignore my directions and the care plan. Doctors have tried for months to say that somehow the fact that my nerves are dying or dead is my fault. First I was accused of drugging and doping, with one doctor almost refusing to treat me until I told her what performance enhancing drug I had taken for epee, and was doing this to me. Two others came up with interesting reasons why they weren’t going to treat someone of my ‘lifestyle.’
Ironically, all I have ever wanted is to fit in, to be friends like people I see acting friendly to each other. What I learned is that family is a word synonymous with “pain” and “hypocrite” – because there is something about me, something horrid, something monstrous; I know this because my parents told me; my aunts and uncles told me. Going to a Xmas party and having 70 percent of the people walk to the other room and turn their back on me, the one who would speak to me, accused me, due to my relationship with Linda, of being a predator to sexually abuse child. That was pretty much the end of those ‘Christians’ I dealt with. Don’t worry, there were more, and they decided to allow the opponents free forum to espouse why gays were going to hell as “anal fecal loving lovers of Sodom” I can joke, “Hey, I don’t do anal” but it was the same, to these people women didn’t even rate high enough on the human species to be hated to that level. We were denied from joining ‘our’ church’s ‘pride stand’ at the Pride event because we didn’t have the ‘right attitude.’ Or I didn’t. Linda they wanted. Me, not so much.
I wish I could lie down and let dunes of sand drift over me. I wish I could lie down, that God would give me peace. But I can’t, or when I do, the pain of laying is extreme. The one thing that has made me so despised is a very short list; I had probably the highest intellect of anyone on the continent, and combine that with a photographic memory and “freak” was the word most used to describe me by teachers. A few times, in innocence, I verbally replayed an entire conversation they had the previous year where I was sitting in the office waiting to see the principal for starting another math or chess club with appropriate permission. One teacher told me and everyone else that I was a sociopath. Oddly enough that was what my father often accused me of. Because I would eat or drink (something out of the fridge), or read (a magazine sitting on the couch that didn’t belong to me). See, I was an incurable thief, stealing what did not belong to me, and punished as such. And my thanking of the corporal punishment needed to be from the heart, I needed to BELIEVE that I was the equivalent to a murderer in the eyes of God.
Gee, wonder why I didn’t fit in. I found out later that God’s eyes are often kinder than my parents. I used to believe that there was something about me, some common factor that would explain why, did they all leave, did they pretend not to know me (that was a favorite trick of parents…and Grandparents, we are multigenerational fucked up). And now I know why. I am an object. I’m not human, but I’m not a human, and I’m not an un-human or “u-h” as I refer to it. I have a slang for it as at least once a week I get people in my living room or I go into many people’s offices who by the way they treat me, show they do not see me as an equal, so that they are the people who determine those who are “like them” or acceptable (human) and those who are not, and thus to be threatened or crushed because they don’t have the same feelings or same rights as the person (an un-human).
But I am lower than that, object. Did I mention the other thing that makes me so hated? I follow the instructions of my father and tell the truth, and keep to the right. When most people have a large amount of fantasy in their life, or revisionist history and they can see me, not even saying anything, dissecting them down to their premises, their core of modus operandi, then they call what they see monster.
My care agency has openly admitted that no one who feels uncomfortable around me need take care of me, and that those who do come don’t need to either. I told the social worker today that Beacon has a list of workers who won’t come, and the worker there, unasked, said it was true and they told her I had seizures and she could leave any time she felt uncomfortable. The social worker asked if the care agency did any seizure or epilepsy training. And she said no, but they told her I would have a poster on my wall on what to do in case of seizure and while she hasn’t looked at it yet, she will. She was more upset that people could not come if they didn’t like lesbians. I said, “well, I think training people to deal with epilepsy might be a bit easier, but yeah, why not train for that too.”
Sometimes when I feel low I refer to myself as “the body” because it seems that is what dictates everything, that I live only to keep “the body” going, or that is all people see of me: my disability, my body.
But now I know that I am lower than that. Those times when I was the victim of hate crime, “I” was not the target; they didn’t hate ME, they just hated, and I fit the category. The times I was sexually abused and raped, even as a child, it was never ME they wanted, I was merely an external object of pleasure, a doll to relieve themselves with. And when I was hurt, cut, threatened, physically abused, beaten, it wasn’t me, it was them. Did they even know my name or just that I was a thing which could cry. I was not abused because of me, at least not then, but because I was an object of convenience.
As an adult, then the social and psychological abuse wasn’t really because they hated me, well I mean they did hate me to the point of wishing I didn’t exist, that I never existed (at least that is what my mother said, but then she had lots of versions of history; histories where she had to be drunk and I was the product of spousal rape; or the one where the pain of having me as a child started so young that even from the first she didn’t want to touch me, it hurt to much to touch or even feed me; I was pain incarnate. But like I said there were many versions).
The skills I learned of how to survive, how to stand up for myself against those who want to crush you because you know what you want and are willing to sacrifice to achieve it, are leaving me. My body is leaving me. My mind a bit too. I am become dependant. I, the person who learned how to run away from home and stay away, and not eat and survive, the young girl who could always take more punishment because these people didn’t know what pain was. I was born into a world of death and torture, this I was told. I was made to perform feats that made me alien to adults. The only thing that hurt me when my father hit my face enough to spin my face was that he had hit my face. He too had rules, where one would be hit, and sometimes a limit on how much. The school I was sent to had no such limit. They used to hit you until you were reduced to tears. It is thanks to them that I learned that while your body can cry due to pain, it doesn’t have to stop your mind or body from acting is you disassociate. That got me another “sociopath label”, to be hit, be crying and calmly making an argument against the practice in theory is not something people are supposed to do.
A few people think I don’t know about disability. And I admit that I came out of the closet very late in life. Of course, growing up in a religion where acknowledging being sick or seeing a doctor is saying that you hate God and have no faith that God loves you did stint me a little there. But I knew all about pain; pain so bad I couldn’t sleep; and that wasn’t this month, this was went I was 16, 17 then I couldn’t walk, 18, and finally operations. I was told they were “irreversible” and that if anything else ever happened, I would never walk again. Oh. Well, that sounded more dramatic back then. Which is why I started training for the marathon, often in the middle of the night, sometimes naked, other times near naked. I got followed by a lot of police cars. Warned a lot. Heard a lot of coyotes.
Because let’s see, I had been used as a human shield before 10, been prepared for torture, been tortured repeatedly, been sexually abused and raped by five people so far (well one family member and four others), been hit or had other forms of corporal punishment every day for long as could remember. I could and was required to go 1 to 3 days without food or water on a monthly basis, was called every name conceivable, had a connective tissue disease which caused pain so bad I couldn’t stay still. I slept on the floor without covering so that nothing more could be taken from me in punishment. I regularly ran until I couldn’t breath or only vomit to “drive the devil’s thinking out of me” (lesbian thoughts). I had paid rent since 13, worked since 12. I ran without lights because I could travel over terrain full speed without them even cross country. I did not care if I lived or died and wished to God that he would make up his mind. So what was it those police wanted to protect me from again?
I thanked God I came from a perfect family, I just couldn’t figure out why I was so screwed up.
“From childhood's hour I have not been
As others were; I have not seen
As others saw
I guess I want to say that I don’t know why you feel alone or lonely, but most of my fight came about from determining that I was simply not going to lay down and die, or to no longer spend my energy doing what I HAD tried, fitting in and failing.
And all I loved, I loved alone…in the dawn
Of a most stormy life- was drawn
From every depth of good and ill
The mystery which binds me still.
So I understand when people have defenses and barriers. I try to have none, and every day, every single day I open my email I am hurt (you have no idea the amount of um, hate mail I receive). I was told today that Ginsing and Calcium would cure my blue fingers. And I just sort of smiled. The person hadn’t even asked what was wrong with me, didn’t care, just cared that they knew all the answers and I was lucky to have them. I can’t break through to that, just be hurt. In fact, there is little, if you read the bible as a template that kept people to Jesus. In fact at one point all the people who were his “friends” were reduced to a handful, who openly said “Um, quite honestly a lot of what you say is confusing at best and pretty horrifying at worst.” Jesus asked why they stayed and the most outspoken said, “Where else are we going to hear the rest?”
From the thunder and the storm,
And the cloud that took the form
(When the rest of Heaven was blue)
Of a demon in my view.
People matter. I don’t. You can attack me, you can’t attack someone on this blog who opens themselves up to comment. Don’t attack the person, but attack discrimination, the ideas that some humans are less than others. Bring people together, remind them that they are the most important. Each person, when I do my postcard is THE MOST IMPORTANT person for the time I do that postcard. You have, what few people have in this society, my full attention, my caring, my wanting what will make you happy, what will give you delight. The same when I send a package. Yes, I am stuck behind my filters (and the odd idea that odd and twisted Hello Kitty and Anime things are interesting to everyone). If you think you care, find me people to convince that they matter as people, let me send a postcard.
Children matter, people who are innocent matter; they are to be protected, whether 5 or 50. I have no hope: not for my future, nor my past, and if I wrote a bestseller right now, I would consider it a WASTE OF TIME compared to sending out 100 postcards. Why would I want to be remembered, why would I want fame? You know how normal parents or immigrant parents want their children to have a better life: I want my life to have meaning, which is that some people, somewhere have a bit of a better life because of it. That’s all.
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