Flame On! (Trigger and Mushiness warning)

Last night I had a meltdown. I haven’t lost control of my emotions or had no logical response in a very long time. A decade? Maybe more. Last night, my nightmares came true. This happens rather often, I presume it is because my fears are actually reasonable. The place I live had a fire. My home was on fire. I am still shaking as a result, but my mind is clear.

A man i had never seen before came to my home, pounded on the door, and told me there was fire and to get out. I turned and grabbed Sprite, and we went outside. My panic was instant. Where do I go? Is it close enough I can go? How far can I make it? Where is the fire? I had no answers, and no shoes. Sprite had no harness or leash and nestled on my shoulders to balance me. This is how I get things done in the house, so this wasn’t out of the norm.

I moved for the office, while calling the apartment manager. I could hear the fire engines coming, someone else had called in. I did consider it but, I had to work on the presumption that my being notified to get out meant they were coming. It was the lat bit of logic I had for a while. I made it rather far, I used the fence and held myself up creeping along. I was the only one outside when the fire went from small to OH MAH FRIGGING GODS THERE IS A GIANT FIRE OH GOD.

I saw it, in a washing machine in the laundry room. There are apartments all around this room, of course. The door was closed, the fire department had to smash it to get into it. They weren’t there yet though, and as the flames went Fwoosh and started eating the building, not just the laundry, I began to cry. The tears were wet, and painful because of my allergy to water. My reaction ranges from full body pain (minimal( to blisters. It was just pain. I back tracked away from the flames and was stuck. I couldn’t be sure home was safe, a sensation that made my panic worse, and I couldn’t get people to answer. I stopped calling folks because I was having trouble breathing. Athsma + Smoke * tears= Cough cough cough.

This is when things get interesting. My neighbors all respect me, every time there is a need they perceive this is shown. There is a strong sense of community with in the hallowed complex. There is also a fear of outsiders, but if you pay rent you are automatically accepted. As people arrived, I did my best to retain the little shred of calm that I thought I had, it was not there. I still suggested that they wake up the manager, it was about eight at night. A lot of people go to bed around then.

The fire department stayed near the fire, and I stayed on the fence. Literally. I watched as they quickly contained the fire, then got it out. The flames were no longer visible by the time we got the manager up. The fire department was more than efficient. In movies and TV they are never that quick and to the point. I know that is to play out the drama but, it really doesn’t credit the fire fighters.

Sprite only tried to escape once, and it was the moment I wanted to. It’s natural to go away from fire. When the fire doubled in size in that split second, she started to bolt. Started. She stopped herself. I want to give her an award, a medal, a treat, and a golden kitty bed that she would never ever use because she was quiet, composed, and she did her job when the other service animals in the complex could not.

A part of my melt down was the pain level I was facing. Standing for more than thirty seconds has me on the edge of my pain tolerance. Past that and we’re entering territory where my systems stop functioning bodily. Circulation cuts down enough that I was blue again. My hands are still a bit oddly colored, it will take time for my body to catch up to itself. The second issue is breathing. The injury to my back spasms and it can paralyze my diaphragm. This is scary when I am not facing fire.

A secondary part was the sounds. Fire is loud, the fire department HAS to be loud. Sirens alone make me want to scream and cry. Even the far away ones. There was banging, hissing, shattering, smashing wooshing sounds. There was also a high level of fear, and fear can be contagious.

My neighbors supported me, for a few moments literally, and then once we could go inside I had help so that if I fell it wasn’t as bad. Then, for the next few hours until the fire department went away, I was checked on by every single person who could do so. Further more, the person alerting people to fire was making certain to tell the people who would be slowest to get out first. It was an act that put him in potential danger and was unselfish even if my not knowing him scared me.

There are rumors of arson today, but I am hoping for either an electrical cause or a cigarette butt left smouldering. a lot of people smoke here, and an electrical issue means that no one purposefully set the building on fire. I don’t want to suspect my neighbors of wickedness, when every single one of them is wonderful. I like them all. Not everyone here gets along with one another but I can talk to every single one of them.

Everyone in my complex has a form of disability, from mobility on to cognitive challenges. Everyone has a different way of speaking and yet everyone here is supportive. I know if I need help, I can ask. I can just scream out for it really, and they will come to my aid. I am left to think on the times when danger came hunting me, and danger did not find me because of my neighbors.

I am safe here, the fire is out and it’s ashes are quickly being covered in snow. I admit I want to see the destruction. I admit my fear of fire is not less but a bit greater. I did not have dreams last night. I was so tired, as I hadn’t slept for a day, that it was beyond me. I am aware that Sprite has not left my side since. She even held it until I was upright this morning, then bolted for the litterbox only to check and see I was following. The cut on my hand (I think it is from the fence, and so did the police) is a little infected but with my immune system that’s fairly normal. If it didn’t get a little pussy I’d worry. It’s not as bad as I expected and my costco gallon of peroxide (it was two bucks!) will get plenty of use.

Sprite and I are fine, no one was hurt. No one lost their shelter or home. I faced my horrid nightmares in reality. Facing fear sucks.

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.

  • Polls

  • Ye Olde Archives of Fury

  • Top Rated

  • Top Clicks