Ramblings of the Midnight Mind

I am starting this post at exactly midnight. I am still sick and in pain, nothing is better somethings are worse physically. First I want to update you all on some very impressive progress. Self advocacy has never been my strong suit because for some reason I am just better and fixing things for other people, but I did it. I have an appointment before September for the bleeding issue. Next week is the soonest that can happen and I have to say how I got this appointment both amuses and depresses me. I called the health department as I mentioned before, and I am writing up a claim without my epic sarcasm. I am also working with the hospitals internal affairs people who are dismayed that I have had to call them but both organizations have treated me as a person despite their staff’s mayhem, and once I got through to a real person past Dr.receptionist I was treated as a person by the Gynecology office. The health department officials called the hospital on my behalf because this is apparently something they can do. I was not aware of that I thought they would just protect someone from deadly mold and the Nurse Nasty. So between the IA and the Health officials I will be seen on Tuesday, and I swore if I couldn’t pee by tomorrow morning I would go in and if the bleeding got worse or I faint from the pain I will go in. I haven’t fainted from the pain yet, which I suspect is only because I had upped the pain meds just before all this happened.

I spent two days calling people, and I recorded every phone call. In my state this is legal as long as at least one party is aware, but each of their offices make the same claim so I have my recordings incase theirs don’t exist or if I do have to sue. I prefer to settle this matter through proper legal channels, a lawsuit is my last resort but I am still gathering evidence while trying to stay moderately not dead. That’s not up to my usual standards of yay functional but it is far from some of the lows I have reached before.

There was a caveat with my getting an appointment but one that I am fine with. The doctor seeing me, who agreed as soon as she heard and interrupted a phone call (that was very cool. “Wait what did you just say? Give me the phone.”) She’s allergic to cats. Anaphalactic allergic. Sprite will not be coming with me, though she doesn’t handle the gynecologist stuff very well anyway. She doesn’t handle me having sex well either.

I feel hopeful, partly because I am having more clots than blood, though everything else is still in a nose dive. My blood tests also say I am not anemic, though I think this is because of the fact I eat mostly meat and high iron proteins. Still I have barely been able to eat anything for almost a week so subsisting on high protein fruit smoothies is unpleasant. I am trying to eat but I don’t put much of a dent into my food before I cannot take the pain. It’s far less than a normal serving, and my normal servings are small.

So that’s the update, at least for now. The fact that this is all happening confluent with the ADA’s 20th anniversary has me thinking. A lot. I haven to say I didn’t expect much because I was five when the ADA was signed, nearly six. I don’t even remember it being mentioned in my house. I brought it up once when I was ten as I had learned about it from one of those beautiful people that gave me what it took to become a real person and not a shell of destruction, I think that this teacher was trying to help me in some way but the memory is vague. My parents and step parents reacted as if I had spilled poison on their supper by asking what they thought of the ADA and if it was at all like what happened in the sixties. I know this memory is here because I am triggered and my triggers follow the line of where my thoughts would be anyway, so it is the taint of blood added there. I smell the violence more than feel it, but my PTSD is a lot rougher than I want going into what I know is a long term battle for care.

I am suspicious of every doctor, I can’t seem to open up to the idea of trusting them and this is very bad. I know that this doctor fought for me today and yet I still am seeing her as the enemy. The medical establishment has betrayed my female body by these specialists of women’s medicine throwing the idea of birth control as the only treatment. Yasmine, Yaz et al is the latest Birth Control that came out that I know of and I have tried all that came before and that one with the same reaction. Something is very wrong in my body, something outside of the “normal” wrongs for me and it is making me sick. I can’t even hold Sprite because her weight adds to the very bad pain.

Then my mind turns left at Albuquerque and wonders why I am supposed to cry with this pain to make it real. I wonder at the Neurotypical or socialogical predisposition towards tears meaning something when to me they are meaningless. They make me uncomfortable and I want to hit when people cry. You can cry around me, I will not hit you now but myself? If I cry mentally it is a battle to not give in to a spiralling decay of self hatred. I am so well trained that my tears are savage monsters to me. I am wondering if this is why I cannot cry without pain, it’s really hatred. Logic tells me that the pain is my allergy to my own tears, since they do burn and blister me. Logic tells me a lot of things that the part of my brain that is incharge right now, also known as Empiriatum PTSD Land, it’s a free ride but it leads to the Hotel California without the nifty music…. well this part of my brain is a shapeless void of shadows and screams that echo in outerspace but no one in the atmosphere can hear. I spent most of my time doing the opposite of what it wants. Don’t eat, eating hurts. Okay but I need nurishment if I want to not go back to the ER of Doom. I have to argue with myself for every bite. It takes five hours to drink a smoothie that way.

All the wrong is still not winning though. It feels that way because I am more vulnerable than I feel safe with. In reality I am always quite vulnerable. I am very strong in ways but physically there is little I could do to stop more than one person intent on harm. Right now I am already incapacitated. I couldn’t stop one person. This has me wondering why I am not always so afraid but rather feel excited by the world. I know that feeling will return once I work out the knots of PTSD, where being outside and exploring even what I know makes me feel free.

In the mean time I am staring at the butterflies coating my walls, and the icons of strong women to remind myself that if I were a super hero in the comic books I would make Superman cry like …well a Kryptonian who got his balls kicked. I know some of you really like Superman but that is so the first thing I would do with a superpower. Comic book powers seem almost always to me to be allegory for the what ifs of disability. I know it is ableism and does detriment to me socially but the psychological twist is, Superman wouldn’t handle much pain because it is unfamiliar to him. I breathe pain and bear it and work through it. I fight through it and try to evoke changes to limit the pain of others. Therefore, he could hurt me maybe, but I would win because all it would take was the first taste of pain and he would melt. Kryptonite cripples him but pain would destroy him.

Not sure if that is logical and yet that is what makes me feel stronger. I don’t feel strong right now. When I close my eyes I see myself sitting on a ledge above the ocean. I am watching the moon in the water and I know that I have nowhere I can go. It is cold there in this dreamspace, and all I wish for is the sun. The moon is beautiful but it does not nourish the land in the same way. Night may give rest but there, when I end up on the ledge the sun has never risen there and the land is drier and hungrier than the New Mexico desert.

My mind jumps again, over the train tracks to the comic book store I frequent. I have tried several in this city, and yet every single time I go to the comic book store I feel welcome. This last time the store was not up to it’s usual standards because they were checking inventory, and instead of acting like I was an imposition when things had to be moved the store owner said, even as my mind did the usual apologies and I almost said them, “Sorry about the mess let me move this table, let me know if we’re in your way at all.” Simple words, but they always leave me wondering there why they do such a great job. The outside of the store is owned by another person whose idea of a ramp is so narrow my manual chair won’t go up it, my electric? Okay yes but that’s something I have control over. The ramp has no room for mechanical or human error or you are in very dangerous position. The comic store owner even commented that he knows for years I have tried to fix this, and I told him I still call once a month and complain.

The issue here is choosing my battles, I have always had a bigger battle than this ramp. My battles touch Washington. My battles do far reaching things. Sometimes I am unaware of that but eventually I find out. I wonder at that, that something I say or do here can reach so far or something I tell someone to support them, a signature I sign, that it can do so much in this world. I wonder at that indeed.

I received another email on the form for this blog and I was left staring into another universe for a moment. Someone I know in real life has been reading my blog, which is fine I suspect a lot of people i know do. However this person took action too, their first taste of advocacy. They saw a something bad and they made their employer fix it. The employer said no one with a disability came to their store, so why bother fixing the inaccessable areas. My friend pointed out that if we can’t get through of course we cannot shop. There was also mention of the fact that lawsuits happen.

Another segway, well my version which I think is sometimes a cliff diving experience. The Chipotle lawsuit has effected M, my dearest of friends. He saw priviledge and fought it today and I know the fighting bruised him. I know it hurt him to have people spew nonsense in regards to access, these able bodied people who are allowed dogs at work and other things that confound me because of the implications about his work. For me they are quite negative. He fought today and doesn’t know he won a battle, not with the people he tried to educate but himself. When he told me that he had that voice that tells him to shut up and didn’t I felt so honored that he would fight. He is learning and he is growing. Every time we talk even if it is silly stuff I feel good. Every time he tries to address his priviledge I feel beyond honored. So I guess this is here because I am proud of him. I don’t know if he knows it but his words have far reach too, because sometimes I would give up if not for him. I also would be dead a few times just as with Sprite having saved me so my words are effected by his effect on me. I wonder if this is how the true chain of reality is built, though I know reality is subjective to the perspective of the mind.

So I am not good but I am not going to die, I got what I need and I am still fighting to effect change. I dislike that I feel advocacy is always required most when I am at my least favorable for the fight. I will not stop however, I don’t think I know how. Just as I do not know how to relax, I don’t know how to lose either.


1 Comment

  1. Keep heart Kat. I’m thinking about you and sending all forms of good vibes I can. And don’t worry about the e-mails at all.

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