However it is packaged, being cast-off, and being thrown into the margins hurts. ‘Sticks and stones may break my bones but words will always bruise me.’ I wonder why it is always easier to bruise than to heal. Everyone is fragile in some way. And so there are so many bruised people in the world. Sure, I am one of them, and I am articulate, but sometimes, the pain of isolation, of rejection, of broken hopes, of dreams whose wings were ripped off, that pain renders me into moans, keening and screams stifled by pillows or plushies. And I don’t think I am alone. Nor I am alone is being one of those who is silent when I should speak.
Thank you for reading this blog. I think you are a pretty interesting and cool person. That’s what I feel and that’s what I say. I am not alone in wanting to know that someone likes listening. I do. It takes courage to add a comment, to lay yourself out. It is easier to keep it private or send it private but to say what you feel regardless of who watches, that takes strength and courage.
After the abuse from the last year or so, the pain of the last several months what joke do I crack? I read from MSN’s live science that “There are many sicknesses doctors can cure with the swish of a pen across a prescription pad. But for all we understand now about some illnesses, there are even more that still stump the pros, confound the public and rage on uncontested.” These ailments which confound and at number five was Autoimmune Disorders: “A catch-all term for a host of afflictions including lupus and MS, autoimmune disorders treat the body's organs and normal functions as enemy invaders. They're usually chronic, always debilitating, and doctors can do little except ease their symptoms.” Geez now you tell me. If you had written that on a paper with, “The doctor doesn’t have a friggin clue!” for me to carry to each appointment maybe I would have so many cuts that are still bleeders inside me.
I liked buying the corsets and outfits and dressing up. I can’t tell whether they were me trying to put a face up for me or for you. I didn’t want to disappoint you. I didn’t want to disappoint me. I didn’t want to fail anyone. I was scared I would just disappear. I wanted to win.
I’ve run out of doctors and I don’t buy corsets anymore.
I have had to rest since Tuesday because my breathing wasn’t exactly 100% (not breathing even 1% of the day can be really bad!). Resting isn’t me. I DO. Well it turns out that sometimes I can’t do either as last night and this morning wasn’t good (you know those trips that after 100 miles and “I thought YOU had the map” just never seem to end – like that, but with pain, bruising and blood). So I am supposed to be resting.
And in all this resting and doing, in trying to figure out where here was and how I was going to live HERE.
I think I am supposed to slow down. To be in the now. To accept the little joys. The problem is that I know what makes me happy, and I don’t know how to do it from here. I’ve tried being a hausfrau (housewife) for Linda, I’ve tried being the one waiting to be rescued, I tried to be the one patiently waiting, but it is not where my joy is. Yes, I am happy when Linda is happy, and when Linda is challenged. But when I take a risk, like when I, or we opened the bookstore, that was risk, that was all out, that was something that made Linda proud of me. That is what makes me happy.
If being this ill has taught me anything it has shown me that I will do things most people don’t even want to imagine to achieve my objective. And that is to live. If I don’t live, Linda is unhappy. If I don’t live, I can’t find a way to make Linda proud of me. If I don’t live, Linda’s co-workers won’t come up and ask her, “I was reading about this, is this YOUR partner.” I want to be an asset to her. I want people to make her proud to be with me, not the opposite. So I am enduring pain, I am doing things so biological people go, “You put your hand where?” I watch horror shows and films going, “Did that! Did that! Oh, come on, I do that three times a week! Yeah, did that! Oh, I don’t think I did that….oh wait, yeah I did.” I’ve been dead, or as close as, and it is nice and it is peaceful. Does ‘nice and peaceful’ sound like ME?
Some are born and trained to lead, some are born and trained to heal. I am trained to struggle. Like Loki, my upbringing, often a type of cruelty, and things that should never ever happen (I am still waiting Mr. President for the Tsar on Abuse, since Presidential Tsars oversee threats to the USA) have chained me to suffering and struggle. And as soon as I think I am free of one set of chains, it turns out they are wrapped around another set. I never asked for some mystery illness, and I certainly never agreed that made me less of a person as the prime minster/president. Damn. Either we are equal or I AM sub-human, and if the treatment I have or have not received has to go to a judge then so be it (chained to struggle, why? Because no, I can’t let it go).
I grew up under several authorities that required perfection. Not your best: perfection. And perfection in every single thing done. The one time I did poorly in a placement test at school I was too ashamed to tell my parents. So I spent a week convincing the vice-principal to let me retake a similar test. I went to our cult’s school, like I went to the cult camp. Where I learned all the things a 12-13 needs: taking apart and assembling a rifle, shooting a rifle to high accuracy, a handgun, a shotgun, (making a bow for me), archery with three types of arrows, endurance training, compass orienteering in the wild, map reading, and eating off of the land (the older campers taught me about camouflage ). In fact to get the second to last level you had to pick and eat a meal off the land. The last level in training was an orienteering trip where you lived off the land. Cool for 16 and 17 year olds….maybe? 13 year olds?
I was free to run away. When I did a mock 'run away' at eight, no one came. Why would they? “If you don’t obey my law, you are free to leave.” I had been told over and over again. I stayed on rooftops, and traveled across them and abandoned buildings.
Due to, um, personal experiences, I learned and practiced for several years escaping out of being tied up, hands behind back, spread eagle, hog-tied (the trick is to adjust to losing sight due to restricted oxygen and accept the pain of a dislocated shoulder). Maybe my teachers should have noticed the burn marks around my wrists but they were into perfection as well. 75% was an Failure. If you wanted an A- you need 96%, an A was 98%. I never wanted to study hard enough to get straight A’s instead of A’s and a B or two. My report cards were the report cards of shame. I did not get a C. It was unimaginable, like speaking back to my father was unimaginable (I am not saying the earth would stop, but if the rest of the family was unable to eat because I had put out a dish with a slight stain and did not replace it fast enough with ‘an attitude of willingness to obey’ in my teens, then what would failure of perfection mean?).
So, I was trained in getting away from gangs, trained in moving along the rooftops, or breaking in through very small entrances like windows which were ‘too high and too small to fit through’, in guns, in knives, in escaping knots and in endurance training. Now what kind of career does that train a person for?
And that’s how I escaped. I trained. I did the LA marathon the day before leaving to check my endurance. Then I took a bus, went into the woods and disappeared. I walked the mountain tops, doing the equivilant of two marathons a day, and 20-21miles over hard terrain, walking 1,100 linear miles plus in three months before I stopped at Gettysburg, PA. After that, I went to University. I worked over 30 hours. The money went to tuition. My weekly food budget was $7. I gave 10% of that money to God…I mean the cult. I took six courses a day and ate four pieces of bread. I had little money for rent. I lived in drug houses, I lived in cellars, in places without heat, light or water, places I had to ride a bus 50 minutes and then walk a mile, lived in the woods, I had a new place to sleep every three weeks. Struggle. Because one day, I would stop hating myself, one day I would be proud.
The mountain tops hadn’t made me proud. The marathon hadn’t made me proud. I wasn’t proud.
And then I found Linda.
Linda was proud of me, and when she was, I felt it. It mattered.
I have always wanted to fit in. I have always wanted to be part of the crowd, to be accepted. I have not attended a university or college that has not had to change the handbook or make up new rules because I went there. I did not fit in. When you have to have the ombudsperson threaten your department with legal action to take a practicum; when you have every teacher fear you (not physically, just not want me), and so you go on, alone. Struggle. But she was proud of me.
In every job I worked the work of three people and refused to allow any boss to bully anyone...except me. It was beneath them and the ideals of the company. And I could not allow it. They would not fire me, they would try to break me. Sometimes they did for a while, but I always came back. Can you see why I did marathons?
Sometimes I came home and I couldn’t talk, I could just stare at Linda. I couldn’t talk because I did not want the filth that I had waded through, that I had poured upon me to touch her. We grew apart and I didn’t know how to stop it. I didn’t know how to make that something she could be proud of, I paid my tuition, I worked, and sometimes she would have to help me to bed and I would be saying, “I fulfilled every promise, I kept my promises.” Over and over and she would reassure me that I had done every single one.
Why can’t more people be nicer? If women were in charge, there would be a LOT more yarn in the world.
I stopped the worst of the jobs. I talked to Linda. We fought for ‘us’ and we kept it.
The question isn’t how to accept the now. There is no stable now for my condition. Instead how does a brain damaged, memory destroyed, nerves destroyed, wheelchair using, oxygen dependent become a type of sword maiden that Linda can be proud of. Because that look on her face is what living means to me. I just don’t know how: as it isn’t 100-1 it is 1,000-1 or 10,000-1. I don’t even live at the same speed as other people now; it takes me longer. There is only so far that my will and assimilation of information can bring me if a plan I make today I forget tomorrow. I wake every nap and morning not knowing where I am, what day it is, sometimes what the words are for things and I work from there.
I do not ask for ‘just one more time’ I want a way to BE, I want a way to be that person for Linda all the time. No, not as it was, but in some way where she is proud to see my weary face, is proud of my scars.
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