Walmart

I had a strangeness at Walmart today. It was a myriad of experiences with a temporary worker, who challenges my brain function in a negative way. Otherwise she is a good carer. She asks questions we just are not quite compatible as my brain cannot function around her constant babble. First I learned that you can in fact make them go get more gluten free things, and while I waited for someone to do that I noticed the symbol of a purple heart on a hat. I turned to do my habitual thanking and spoke with the man for a moment. He was surprised and then smiled at me and said he had not expected thanks and it has been seventy years just about since he enlisted, to fight Hitler. He was proud of his service and he is in fact proud of what the people of this country have become, over all. Not our politicians but I have yet to meet even a politician who likes politicians. It was a surreal moment as I realized that he fought in a war so long ago that I only know one person who was alive then. His happiness with my gratidude and the smile were well worth my nervousness in pointing out I saw it. The purple-heart meaning he was injured meant it was more important that I thank him.

In my shopping I always cross paths with strange characters or people who just jump out at me visually. A woman in a beautiful sparkling sweater with a Hajib looked over the meats at the same moment. I complimented her sweater, her daughter translated and I thanked her daughter for that. They were surprised by this. I thought that this post would only entail at that moment my little moment of wonder at our aging warriors, as my brain tumbled over my wanting to share that I met a real hero. I was almost finished with my shopping, hunting down an elusive cheese (which I never did find) when the woman and her daughter returned and flagged me and my tempcarer down. They were in a panic because her ride home had vanished, they had only EBT and they were stranded. They needed help and this is where the Government housed them, as refugees from the Iraq war.

I had no expectation of this adventure and my tempcarer was surprised when I stopped to help them. They asked for a ride home which was impossible and a terrifying concept to me not because I am such a quarrelsome creature or my allergies but because this is something they have done before. So we made calls. We tried every option before calling of all places the Mormons that had given them their book. I even had to call the police. I felt terrible doing this. Then the girl mentioned her mother has qualified for a carer. I wrote down resources, and then we had to finish our shopping.

I felt guilt I could not help them and their relief that I helped was amazing. The gratitude. I talked to them both a while and they wanted to hug me, which I could not do for them but in the end they got a ride. Still it made me wonder how they got here, how they will adapt. What resources do people have. I literally just got home and am writing this and I do not know, but I wonder. I find it a horrifying thing they have no transport and I cannot imagine the fear they feel. What it must take to leave your entire culture behind. I found them brave, and yet desperate. It is their desperation that leaves me hoping I meet them again.

Walmart is always an adventure for me, I get overloaded between false alarm fire alarms, the people and shopping and yet this was more an adventure than the norm. I did get a bit of an allergic reaction but it was worth stopping my day to help people. My tempcarer is rushing right now to put all the things I got away. No toys even, I just stocked up on food. I feel a strange sorrow that I cannot do more, that I cannot know them more intimately but it is not an option at this time. So I will wonder and I can hope that we meet again. I gave them resources they did not know, and I see a young girl with many burdens and I wonder who she will become.

Normally I expect to bring home food, not questions about the shape of the universe and the scheme of things. Quite the load of shopping today!

Advocacy: Lets Help Amanda Baggs

Long ago when I first started this blog I received comments from several people. It startled me. THe idea people would read this blog. Then I had to put it away and found out people didn’t quit following. So with that in mind I am writing the first advocacy post in two years. A great deal of what I learned about advocacy I learned from Amanda Baggs. She was kind enough to email with me for a short period when I had just survived my exhusband and I found comfort in her words. I was able to keep going because I did not feel alone. I didn’t feel trapped by all the things in my mind or the way I see and think anymore. Amanda is one of the most powerful advocates I have met, not in the sense others see power but in her effect that I can see.

These links are PTSD trigger alerts. Simply put, Amanda has been tortured by the hospital that should have helped her and is being bullied into a dangerous and potentially deadly situation. Here are the links and they do include how you can help. Sharing this post or these links will also help.

http://paulacdurbinwestbyautisticblog.blogspot.com/2013/04/no-anesthesia-for-disabled-woman.html

http://webmuskie.tumblr.com/ This tumblr has an entire series of documentation posts about the event. This is the first hand source of the info.

Please do what you can to help Amanda get her needs met and not be punished for the malpractice of her medical team. I am going to go curse into a corner and figure out how to make the calls around my brain tomorrow.

Update: I redid the links to the blogs, they should both be working now. I am not sure why they weren’t since the links are the exact same. If issues persist please let me know.

 

What the Hell! (Trigger Warning)

Today’s trigger warning is brought to you by abusive caregivers! Today I did not want to wake up. Sprite insisted, and in her special way got me upright, into pre-shower jammies. I always put on clean pajamas before I shower, so that I can then put on clean clothes. It feels good this way. So I put on my red satin jammies. I feel like a movie star with this on. I did the morning ritual, pee, meds, considering food, rejecting that idea because it’s too early. I curled up and watched a cartoon on my computer.

It was so late and my internal clock went “Ding, caregiver is late.” I looked at the clock, she wasn’t just a little late. She was a half an hour late. So I called the office. They normally call if someone calls in, and I requested that they make sure she knows, she calls them BEFORE she is late. They called me back, they gave her a formal warning. This is your job on the line, if you don’t call in next time you get fired.

I don’t have to hear the excuses for why people are late now. I try to not be late, it makes me panic to be late. I do not hold others to the same terror of lateness that I experience. I opened the blanket so I could watch the sky, still planning to shower. This would be three whole days not a week… twice in a row! Improvement. The office and I were on the phone when she walked up, so I told them she was here. Simple. Easy.

She starts giving me the excuses and I cut her off. “I don’t want to hear them. I don’t need to either. Lets just get the work done.” Maybe I said it wrong? I know better than that but she argued about feeding the cat, about feeding me. I pointed out she was over an hour and a half late, and since she never called I couldn’t compensate for that. I have to know she is going to be that late when I am in motion or it’s too late. I save moving sometimes or will save movement energy if I need to. I also tell her that we will be mopping tomorrow…

She storms off, then I hear crashing. I smell bad fumes. I was eating. We don’t clean when I eat because the smells can make me queasy even on the approved stuff. I choke down my food, more crashing. She’s throwing things. I hear water splashing on the floor. She never went out for a broom. My questing mind won’t let it go. I am afraid. Sprite is afraid., Sprite.. afraid? My indicator of when I should be afraid is screaming in terror and is trying to find a safe place to hide.

I stopped doubting myself, and considering my options. I had to look to see what was going on. I used movement energy, I got upright and moved to my room, I paused in the door way, my knees were dislocating so I relocated them. The cracking made her look up. My bathroom was thrashed. No amount of cleaning makes THAT kind of mess. I grabbed my ebook reader, and then went outside. My energy is spent, I am afraid. How do I keep going? My brain stalls a moment. What do I do?

I lean on my fence, letting it hold me up. Today was thankfully good on the ability. So rare are these days when I can move this far without falling. I did not fall. I creep out of my gate when I realize she could see me. I hold my mace at the ready. I am vulnerable, the sun is burning my skin. My neighbors look up. They are gathered as they tend to be and they notice me. I rarely commune with them, but when I do go out I am never in disarray. My hair is always brushed, my feet always shoed. Shoed is a word? If not it is now. I am never in my pajamas. I am never without my scooter.

The agency and I talk, I explain what is happening. I am put on hold and transferred to the man who runs the agency. Robert is a tall black man, he used to play football, and he has always felt safe to me. He has a nice smile, and always seems to understand, even when my brain is tied between pain and panick. I get the words out, “I need you to come remove my caregiver, and get the keys. She can’t be here now.” I explain what I saw and that Sprite is also afraid. I also tell him I am pretending to call my mother, she has no idea I have done this because I am afraid.

He got here in five minutes. I had just made it in, the door left unlocked. The window is still open. Jo has moved to the kitchen, supposedly the bathroom is fixed. I haven’t looked yet. She is smearing the broom around in soapy water. No mop. She doesn’t grab the mop until Robert is here. My knight in shining armor. Damned damsel in distress. I hate needing a rescue. I signal for him to enter when I see him. He steps over the puddle that is my entry way, and her mood shifts. She stops glaring at me when she sees him there, and grabs the mop. We let her finish “mopping” though my floor has brown streaks in it now. It’s dirtier. Cat poop litter streaks? That’s the level of ick that is in the bathroom. That is why I keep the germs seperate. Different broom, different mop. My kitchen floor is coated in grime. It scares me.

He didn’t tell her I called. I didn’t have to talk until I was ready. Robert noted Sprite, still screaming. She calmed some when he entered. Sprite likes him too. She moves and sits beside him. She keeps growling and muttering at Jo. I get the keys back. Robert and I talk. “You should never be afraid of your caregiver. You did the right thing.” I explain, sometimes I am afraid of everything and everyone and I can’t always tell if it is reasonable fear. Sprite tells me. He points out that Sprite calmed down the moment the door closed behind her.

Sprite is asleep. I have been calling people. I was on the phone with someone, I also got a few calls while in the moment of mess. I also texted two people before I realized it wasn’t PTSD and autistic overload. My body hurts. My body doesn’t just hurt but my mind too. The switch between calm and rage was so sudden. I flashed back. My terror was real for the moment. It wasn’t too much it just was. The agency respects me as a person and knew.

I called my mother, and told her that I had to use her as an excuse. She pointed out people DO argue with their parents, so it was a good excuse and to use it again if I have to. We talked. There was no anger. There was no fear. I talked to My Beth, my sweet sister. She asked why I was so out of it. I told her, we talked about the mundane. My Beth is almost an adult now. I know I should not call her mine but she is mine in a way. My memories. My sister. My Beth. She was tired, and yet she made sure to talk to me a bit. We didn’t talk too long, they are moving cars today so she had to go help winch something. My mom called back after they were done winching. She was glad I trusted her enough to use the excuse.

The reason that is trust is, my caregivers before who were not giving care but abuse have called to verify my excuses. I am also afraid of using an excuse with someone who could be hurt. It takes trust to let someone be your excuse. It takes trust. I am trying. She is trying.

Still… what the hell happened? I can’t follow the line in mind. A half an hour of abuse happened. The why escapes me as it always does. I can handle the cursing, I can handle someone being mad. I cannot handle the flinging of things. I have to pee now so I will see how bad the bathroom is. The floors should be dry now. It’s been an hour. Right now Jo is finding out she no longer works for the agency.

I am always afraid that I will be told I cannot have a caregiver again when this happens. I already know I have a temporary person coming in and that the agency doesn’t hold this against me. They hold this sort of action against the caregiver. I am known to be a rather laid back person (on the outside, my head is not so laid back as you my readers know). I tend to roll with the little challenges, I try to work things out.

“You should never be afraid of your caregiver.” I am going to try and remember that. My little fear and trepidation, I will try to let them go. I am not afraid of anyone at the agency, my neighbors, and I am working on my fear of my mother. I felt safer outside of my house today. Maybe this is in and of itself a form of progress?

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