Tick Tock Tick Tock (trigger warning)

I feel time today, more so than other days. I am aware that I am up way too early and that my body will scream for sleep again before 4pm. Pain woke me and with every breath I could feel the tick tock of the clock. I only have digital clocks around because the actual ticking sounds tend to make me want to scream when I can’t sleep. Breathe in, breathe out. Inhale. Exhale. I wonder at time.

Time for me is such a disjointed creature, not just the fast and slow but the way that memories sprout up at the oddest times. Since watching that horrible movie this week I have had to face my dangerous side. I know I am a dangerous woman. I have skills that could be used to hurt a lot of people if I wanted. Yet, I don’t think this is what makes me dangerous. Do I know how to kill you with anything at hand? Sure! Will I? Only if you start it. Only if I have to defend myself. Even then I may just let my cat protect me and I doubt I will kill you.

I am left with the images of blood on my hands. That phrasing is wrong too. The blood I see on my hands never goes away. No amount of scrubbing or washing will remove the memory from my head, or the sickening sensation as metal penetrated flesh, the thud as metal hit bone. It’s there for me always. Between the seconds, in every spare moment there is a small reminder. I feel queasy thinking on this stuff but I can’t not so I try and go with the flow.

I am burning and I am freezing as a result. I see myself from outside, but this is not disassociation because I am still here. It is merely me watching who I have become. I know blood. I know how to make several times of incidiary device, most of them on timers, one with a deadman switch though I am sure if I wanted I could modify that to fit into any other device. It’s not that hard. Then the smells would bother me, but that is another reason that I wouldn’t use those skills.

I am dangerous, but not because of those things either. I am dangerous because I choose to not kill. I choose to not destroy. I am a builder. I am the Katalyst. Everything I do is for change, and it always has been. The choice is mine if it is a positive change or a negative change. When someone angers me and I want to stab their eyes out, I don’t. Instead I try to educate them so that the next person they meet who could be as dangerous as me or more so doesn’t actually stab their eyes out. I try and give them knowledge because knowledge is the biggest force of change.

I am not the monster my father tried to create. I am not my mother’s daughter, to be pitied and a victim. This also makes me dangerous. I went off of their maps and plans for me. I am a rogue agent in the cycle of abuse. Not only have I gone rogue but I have also taken others with me. I have spoken up when a mother slaps their child at Walmart. I have called Child Protective Services on my own friends’ parents. I have done things to protect other people. I have done things to change my community.

When I see wrong I don’t turn away. This makes me dangerous. I know that just existing has put me in danger and I find that my fear of being hurt again is less and less. I know that I can date successfully if I want because if a man or woman tries to hurt me, I can protect myself. I also know I make the conscious choice to not be an abuser as well. I don’t ever forget I can hurt them.

The ticking clock in my day whispers to me about how this is. I can envision outcomes. I can see the paths before me. Do I choose one? Never. I never choose the path. I choose to roll over the grasses and enjoy the flowers. I may like my structure, and I may have my habits but none of them are as life affirming as the mornings between the clock. I can feel the morphine entering my blood, it creates a path of  numbness up my back as the next minute turns over, in another half an hour it will actually hit my brain and I will feel my muscles relax, the pain pushed under a slight haze.

The haze doesn’t take away my edge though, it gives me a better one. I know I will never be able to go outside without being armed to the teeth with precautions for and against things. Mace is the least of a predators worries. I know that I cannot enter a building without knowing all the exists, the safe places to sit, and that you should never sit in a corner with your back to the door. Sometimes, I try and sit in those seats just because.

I wonder why I needed these skills. What did my father thing I was going to grow up to be? Him? These skills are useful for a small segment of the population, people on the run from the cops, the cops, soldiers, and other people who fight all the time. I know I fight constantly but I fight in new ways. The ways he taught me may be effective but they don’t make change happen. They cause fear.

I think of my sensei, and I think of his home. There was never a seat in a corner, and the seats always faced the door. I think he too knew of the ways to be dangerous. Okay I know flat out he did. I remember the way he watched me the first time I entered his house. There was no rushing, just watching. I think he knew in that moment just how wrong my life had the chance to be. I remember him crying, the tears are fragmented. He never hid them from me though.

I remember my sensei not being afraid of my father. I remember my sensei teaching me the ways of defense instead of offense. I remember him showing me how to laugh. Laughter makes me all the more dangerous. The danger is to those who want me in their construct. A woman like me is apparently rare. I think that a woman like me is not so rare. That implication is that I must be as strong as a man usually. I am stronger than any men I know. My sensei is my equal, that is something he always told me.

Physically, I am there to be underestimated. I like this. I may be a lot weaker than many people physically but I know how to use my body. I also know how to use my wheelchair for self defense. It’s a part of the training. It’s also a part of the Escrima classes I took to get over that fear of going outside. Instead of my knee being used which would damage me, there’s always the arm rest. Arm rest has metal. Face to arm rest. That should probably take care of it.

If my body is so weak and my mind is so strong then together they can balance out. I know this is why I managed to move here. I did not evade the concequences but I do not fear being trapped ever again. I know I have what it takes to live fully. This is again something that makes me dangerous.

You see, all it takes to be dangerous is to be a rebel. To be a rebel you must do as you see, try and change the world, and ignore the rules of man. I am just one of many dangerous people in this world. I make friends out of the dangerous people too. I am not a killer. I am not a machine. I am not evil. My danger lies in my want of good, equality and justice for all without equivocation. My danger lies in my ability to enforce changes that should’ve been made twenty or more years ago. My danger lies in my refusal to just die and go away so that people who fear difference get comfortable.

There is no threat that I will harm them, there is fear from them I will. There is no threat that I will infect them, because being like me isn’t contagious. There is fear that I will show them that they are wrong. That makes me the most dangerous woman alive between the seconds. (Also I should so make this into a movie. 24 movie has nothing on this post!)

Mourning

After writing my post earlier I left some voicemails with handy men, my friend M said he will pay for it so I can get my bed. I am tired, more so now but as I felt like I was going to scream and couldn’t find peace in my heart I needed to move. I felt pulled, and so remembering I had a ramp decided to risk the scooter breaking down leaving me out in the world. I took my cellphone, my keys, and left the cat at home. I went the way of the pulling sensation, and wound up outside of a beautiful temple. This Buddhist temple is just a block from my apartment. I sat outside and looked at the Lotus blossoms and butterflies, and realized, I belonged. I find that Buddhism has helped me keep calm and not give in to the darkness that pain makes so tempting. Buddhism is not a religion but a path and a way of living, as I was taught. It is compatible with my beliefs.

I sat outside for a half an hour before I decided to go in, and the Abott himself greeted me. He asked me why my heart ached and we talked. I had secretly hoped he would give me permission to continue my relationship with my mother but, “The poison of the heart can poison the soul. Such a pain as you endure was preventable. The poison of the heart will spread. You must remember that your heart is yours.” It wasn’t a way of saying to reject her but a reminder that it is my life and I must come first. Something I knew all along.

I was asked to please come again, as often as I wish, and to bring the cat next time. I ventured out and found the peace that I couldn’t quite grasp. I charged the scooter again while we talked, and decided to risk Walmart. Walmart is a half an hour with these batteries and once there I had to park and charge again. I had another encouter with englightenment. A world war two veteran saw my unique chair and decided to ask if I knew how to get one. I could see his pain, he proudly told me he forgot how old he was and we laughed a bit. I gave him guidance on how to get his wheelchair, as for any of us to admit we need the help of a chair is hard. He told me I reminded him of someone he met long ago in the war. My face, my eyes, but he commented that she had red hair. I didn’t tell him my natural hair is red, and felt a longing for it again. This is twice that I have longed for my hair back at the vibrancy of it’s nature. The black lets me feel safe and I know I look beautiful either way. It is merely difficult. She was a nurse, and he was injured. She was injured as well but hid it so she could continue to serve, her time with him was spent building a trust and she taught him to understand that the enemy wasn’t seeing us as we saw ourselves. It was an interesting story, frightening in some ways but he found comfort in me, and I in him.

I did some shopping, I got a copy of the key to the gate so that my caregiver can actually get in (oops) and a pair of padlocks for my gate. My batteries held so I looked in a few stores and found many things I need, so I took pictures of them with their prices. I bought the nail trimmer that I desperately had to get William, and found two jacket style harnesses one pink and one black on clearance. I sprang for both, and they rang up even cheaper than they were marked. I also got a bit of halloween decore, a little sign that was three dollars and made my entire day. “Wicked Wanda’s Witch Shoppe.” It’s green and a light orange. I named the stuffed witch I got at the dollar store Wanda and she is also green and orange. It’s too perfect to deny. So far this is also my most expensive decoration!

I feel good, if sore. The side walk only has two in accessible areas, one on each side of the road between the shopping center with a grocery store that carries gluten free food, three discount stores, and has everything I could need or want accessibly. I even found the curtains I want for the price I can afford.

I did notice a difference in this neighborhood, normally when I go out I feel invisible and in danger. This time drivers made sure that I knew they were there, and that they saw me. One man stopped when the scooter almost died on the way home and asked if I was alright, since it was going so darned slow. He watched me to the gate of the complex so that I could get home. Normally I wouldn’t want that but I cut it close because I had to backtrack for the gatekeys. Oh I also got some gummy bears. I just needed a small treat and my entire day became such.

Thank you all for supporting me, it gives me strength I cannot find with in myself. I may fear, I may mourn, but I will never surrender. This neighborhood seems very much handicapped friendly, as I found special access points for wheelchairs in areas where it may be more dangerous for a chair to be in the street or normal foot traffic. I’ve never even heard of these things! I dreamed of them. I know better ways around some of the rough spots for next time, though I will wait until the scooter is repaired, I shouldn’t have pushed it. It was stupid, and a mistake. I also feel way better for it. It seems doing what I want is a rarity, and that must change.

Spiderweb has no Spider

March is Brain Injury Awareness month. I have brain damage in my fine little skull, all from untreated concussions, working through the pain, toughing it out and yet, I am never certain what issues spring from what challenges. Since I have autism and brain damage, as well as visual and hearing ailments, what causes what?

Too, when I sit out in the sun for five minutes and note my pustules later, reacting to the presence of the very thing that makes food grow and light fill our world, I have to guess, is this exact blister from Hidradenitis Supprativa, a side effect of Ehlers-Danlos Syndrome, an actual pimple, sun poiosning as my mother calls it or is it still something else.

Then, with the issues with walking. It could be a side effect of the Ehlers-Danlos Syndrome, the Spinal Cord Injury, or just a minor pelvic dislocation, but is it something else? Did falling through that chair do more damage elsewhere that no one can see?

Multiple disabilities are a huge challenge. When i thought I had a single disability, I had unanswered questions. When I thought I had two, I thought the world was ending. Then with three, it all began to feel alright, but with four I was once more mourning, and with five I became angry. With six, I felt as if i should just die. With seven, I just stopped caring about how many I had, and began to fight to thrive. With eight, I found it status quo, with Nine, Ten, Eleven, I began to count it all over again.

I am a spider’s web, everything is connect, everything has always been here it just has a label. The labels are flies, sticking in my webiness, wiggling and shaking things up. So far, the labels have done very little to better my life. Usually they complicate it. If I tell a doctor about more than one disability, they usually give up on me. What right does that give them to deny me a quality of life?

I want to see, I want to hear, I want to live in a world without fear, I want to dance, I want to be just me, yet me is not without disability. I no longer believe in a cure for any of my ailments, except the spinal cord injury. I do not want them. I fear the changes to personality that treatment could’ve brought. Sure, I might not have had it as hard as I have. I might have had more than just a single man to teach me how to be a person. I might have had friends.

Or I might have been worse off. I get tired of able bodied people, those in denial of disability, or those who think we are all cookie cutter identical creatures telling me what works for their disabilities.

I have tried experimental treatments, mostly for my PTSD and they made it worse every time. EMDR, I have no idea what the letters mean but I remember the treatment. It worked for every other patient, so I was just a failure for not becoming magically better. Penicillin allergy even has an example, a doctor wanting to see just how allergic I was, because of course it costs more money to have another medication and money has more value than the patient.

When I was younger, long before my autism diagnosis I had an Occupational Therapist funded by the school. She did teach some neat things, we worked on my fine motor skills, which still suffer, and made earrings. We did all types of activities, molding things in clay, dancing. This was what I did for recess, another bit of isolation granted by my abnormalities. I was lonely, until this program came forth however. There I met the other kids who were a little like me. This woman decided to have my mother take a rubber brush to rub all over me, to try and desensitize me to the world. She did not ask me, she just called my mother in and during school one day she grabbed my arm, while talking to my mother and began to scrub my flesh.

This worked on the other children, so it had to work on me. I started screaming. It felt as if she was pealing off my skin, I screamed, and screamed. She told me to shut up, it would all get better. My mother took the brush out of her hands and asked why she would do that, when I was sobbing. I don’t know the end result of the conversation, but we took that brush home. It was just like the ones sold to wash dishes with, and that is what my mother did with it. I think she chose to lie to this therapist. I do not remember because I went into my head, flashing back to times when my father did try and peal away my flesh.

The sensory overload pains me to ever remember, it wasn’t just a sensory overload it was a flash back and a denial of my right to unique treatment. I never accepted the treatment of this OT again, I went, but I became surly because she wanted me to be like the others. She wanted to scrub me, until I just didn’t care. It did not matter to her that it hurt. I still have nightmares from her scrubbing.

I wish I could say it never happened again, but, she would scrub me herself, at times using this as a punishment. Too often the medical community does this, forgetting that each body has a unique chemistry, each brain a unique perspective. Now I fire doctors who do not listen, they get one shot and that is it with me. I have to be harsh like that to survive.

My cat William, the one with brain damage, has a similar problem. Touching his paws hurts him. He has dangerously sharp claws, cutting me when he doesn’t mean to, but to trim them means to cause him that same sort of pain. I figured this out after I had used our PetoFiler nail trimmer on him, it vibrates, rotates and basically sands down the nails. Sprite loves it. William was in pain for days and I barely tipped the claws off.

Each method for a traditional manicure fails him, I have yet to find out how to protect us both, but knowing what it is like to be tortured by someone thinking they know what is best, I back off. I would rather have cuts than send him into a world of pain. If you are a doctor, reading this, try and remember your patient might feel pain differently than you do. Sometimes I have to go naked because the pain from cloth rubbing against my flesh is as potent as that scrubbing brush.

It was yellow, it was multi-textured, and it is one of my worst nightmares. Those moments are on par with time spent in the care of a diagnosed psychopath. Do not traumatize your patients by thinking you know it all, or that every treatment should work for them. Humanity is full of individual people, not a bunch of identical organisms.

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