2017, huh? Sucks.
My first post on this blog was my birthday this year and I did my best to do a quick summary of how I got to where I was at that point. Like simple mall map instructions to which level in Dante’s Inferno I’m in. Well, things went from bad to worse to FUCK so read the back story here and get a load of this shit… And remember this was all in the last four months.
TBH, I’m exhausted and would rather not write this but after the ADAPT protests began last week I remembered why I bother to write about this anyway, a lot of disabled people don’t and the ones that do get ignored so the least I can do is help elevate the general comprehension of how disabled people live their lives. I don’t have to do a good job, I just need by making the good disability blocks have to do less work. If people like myself shared what it was like for us there wouldn’t be as much work to be done to gain civil rights.
This is a premature digression but I had a phone conversation today that I think encapsulates all of what I’ll be writing about so you could just stop here if you want to.
- I called Verizon to cancel my cell phone.
- Ms. Verizon on the phone with me asked why.
- I said that I was disabled and wasn’t able to use the cell phone anymore.
- Ms. Verizon suggested that I rethink my decision and she could make the deal much sweeter if I used Verizon for my landline.
- I thanked her for the offer but I said I would prefer if I didn’t have to talk about my disabilities just then.
- Ms. Verizon reacted like a white baby boomer accused of racism.
- She told me this is a deal I couldn’t afford to pass up. They had things that people like me use like headphones.
- I said “I understand this is your job but,” and she started talking over me and I continued on, “if you asked me to explain why I can’t use a cell phone I’m going to have to do explain my disabilities to you and I really don’t feel like doing that right now.”
- There was a long silence, some typing, and then she said, “okay, your canceled.”
- That isn’t a typo. I could actually hear her spell it in her head, “your”
Remember I had a caretaker who stole some things and money. Where did that go? Practically nowhere. That’s when my auntie started to fuck me.
At the time auntie L was doing almost everything for me as she had been for the last few years. There were so many little obstacles to get through, like my not being competent under the eyes of the law. Auntie L really busted her ass picking up the slack that my mom’s family had just left on my lap and given how physically and legally disabled I am it would’ve been impossible to do on my own.
I wouldn’t be here for her to play with if it wasn’t for her.
Put on some 80s montage music for the next part.
I have a new caretaker: Zari, the same one I wrote about four months ago who had just arrived. She does more than she’s required and she’s here more than her hours are allotted for, she genuinely seems to care about my well-being. That’s new. I quickly got involved in her their family drama as Zari regards me as she would a niece and I genuinely like and care for her family. I became acquaintances with her son. I say acquaintance because most times we talk it’s when he is out of town and calling me drunk. When he’s in town he drinks disgusting protein shakes, I’m not sure which is worse.
I have another caretaker who helps me at night: Savage (a nickname, yes, but not at all ironic.) Savage and I are almost the same age which I realized might not be a good thing but we got on immediately and she is down to help me with anything. She stays until about 1 o’clock in the morning so it’s become a little bit of a sorority house over here in the evenings. If a sorority house was immaculate and consisted of two salty girls who religiously watch WWE.
The caretaker that stole my money? She got away with it because my auntie L didn’t submit the final time with the state. It was then that I noticed she was not only more frustrated but short with me so I tried to bother her with as little as possible, that apparently was the wrong thing to do.
Finally when I asked why she didn’t file she said that it was a lost cause so there was no reason to bother. I always plan for the worst case scenario so okay fine whatever but I kept asking her if IHSS was doing an investigation on her because I wanted to make sure she didn’t go on to do this to someone else. Auntie L was unintentionally offensive because she was annoyed with my badgering her, she said it didn’t matter and that wasn’t our problem. Her insistence that we just let it go put ice in my veins. I wasn’t going to sit by and let this happen to someone else if I could prevent it, at least that way it be worth going through what I went through because obviously I survived it and others may not. (Don’t worry, I took care of it on my own with IHSS)
Auntie L insisted that I am never make any calls and told everyone for my social worker on not to take calls from my caretakers. Despite the fact that I was still considered incompetent under the eyes of the law, mom didn’t file when I was 18 because she didn’t think I was going to live very much longer anyway. I can’t even speak to my social worker because I recently found out auntie L told her not to speak to me at all and so she won’t answer my calls or return them…
I’m now legally competent. Legally competent but crippled is written all over any records of me and that’s all people care about.
My Social Security was cut $200 each month in exchange for my having caretakers and that disqualifies me from Meals on Wheels. Apparently human contact is an acceptable substitute for food.
Mom got worse very quickly. She became incontinent, she lost the ability to bathe or eat, she was more violent, she was having near consistent panic attacks, and would hallucinate that there was a murderer in the house. She tried to escape many times but couldn’t figure out how to work the handle. The sadness I have over this and my inability to do anything feels like dying and I have almost died a few times only to get resuscitated in the final seconds so I know what that feels like. I can now understand how if you have nothing to fight for you can die of heartbreak.
I felt guilty that mom’s family didn’t know anything that was going on so despite none of them reaching out I put some updates in the family chat on Facebook and a few of my cousins actually reached out. There is nothing they can do, of course, neither live near me so there’s nothing they could do. It meant a lot. knowing that one of them actually cared brought me to tears and I was really proud that they were from my generation. Our parents fucked up but we don’t have to. My cousins children can live in a world where this family can actually be a family.
Mom got into the highest-rated Golden Living facility in the big city. I met with the director Armand who was incredibly nice and personable, the place was small with a large staff and nice amenities like a rather large garden, best of all is that they specialize in Alzheimer’s patients.
As soon as mom left I went full tilt and getting the house in order. Fixing everything that was broken, going through the literal garbage that mom collected, going through her files which included every receipt she had ever received since about 1994. That isn’t sarcastic. I think the oldest bunch was 1992 or 1994.
And that’s when auntie L lost it.
It annoys auntie L that I speak to her so formally, that I thank her too much because it comes off as condescending I suppose, that instead of saying I need help I ask for help saying things like “if you have time” or “feel free to say no” which sound sarcastic in text and is annoying in person because it suggested that she wouldn’t help me if I needed it. She didn’t like the walls I put up and it personally insulted her that I couldn’t let my guard down with her. Most of all, the thing she hates the most, is being pacified.
Guilty, your honor.
I did everything I absolutely could to pacify her. She’s definitely got me there. I think I can at least intellectualize why it was so offensive to her. We only saw each other sporadically throughout my life but we were warm to one another and our two households made it clear that they were always there for the other. That’s part of the reason I had my guard up. I know that my auntie L feels indebted to my dad and since she had said numerous times she wasn’t even my real family; I assume she was helping me to pay off the debt to my dad. The context is that she said it when she was complaining about my mother’s family leaving it to her to do everything when she’s not even our real family since she divorced my uncle. It wasn’t intended to be hurtful and I always knew that but it’s hard not to have a physiological reaction to things like that especially because the estrangement from my mother’s family comes from my mother always telling me that they were her family and not mine.
I get it. I have baggage.
I have trust issues and abandonment issues and issues about issues.
There is no personality trait that can’t be as beneficial as it is self-destructive.
I admit that I am insufferable at best. I’m guarded, I’m suspicious, I’m untrusting, I’m anal, I’m condescending, I’m pretentious, I’m hyperbolic, I’m pretentious enough to say I’m hyperbolic, I’m prideful, I’m petty, I’m unforgiving, I’m relentless, I’m impulsive, I’m too analytical but also too eccentric, I easily disregard people I don’t like, I’m manipulative, I have no mercy, I’m independent, I’m a burden, I’m everything you could hate. And thank God for that.
I will always be a terrible person. Trying to fight that is an unending battle and can leave you in arrested development. As annoying as it is, and I know that it’s annoying, I believe your faults are the reason you are living your current life. You’ve been incarnated specifically to deal with those faults and the reason it takes reincarnation is because the education isn’t about petty things like owing someone money or someone insulting you on the Internet. It’s a collective education because karma belongs to all of us. Learning to allow free will, learning to integrate, learning to move forward. These are things I’m striving toward, above all else, and in my attempts I am often condescending and distant and resentful.
That being said, auntie L now regards me as a terrible person and I don’t necessarily blame her.
I don’t lie but it’s not exactly to keep me out of Hell™ because I’m pagan and I don’t believe in Hell™.
Never lying is an incredible manipulation tool for someone who is powerless. Your story is consistent, it quickly reveals other people’s lies, all you have to do is say what is true, and you get to choose how much of that truth you share. Not lying also allows you to not correct anyone else’s lies.
So this is the current kerfuffle:
Auntie L told me I need to get a renter into the master bedroom and suggested free rent if they get the utilities. My caretakers and their friends and family and my friends rushed to get the house in order and when it was relatively decent auntie L told me she posted my room for rent on Craigslist and there were a lot of responders but there were two guys in particular she thought might work and was going to contact them when she got time.
I’m not one of those people who is scared of Craigslist so auntie L asked me why I looked reluctant. Specifically, she asked me if the problem was that they were men and reminded me that I said I didn’t care about gender.
I pandered: I was concerned about someone moving in that I hadn’t met.
What I actually thought was: What the fuck? Why would she post a listing about renting a room in my house and not even send me a link to it or let me be the one to speak to potential renters. Also, Savage had emphatically told me that auntie L was up to something because I could rent that room for at least $600 a month. I said I was fine with anything I got as long as it helped me pay off the two credit cards I maxed out trying to survive with mom these last six or seven years while Social Security and IHSS. I could have called a phone sex line and they would’ve said “I have a headache.”
Savage said she would kill me if I didn’t charge at least $600 a month and my auntie L was planning something.
When she kept avoiding sending me the link I put a listing for myself to see what responses I got and I said I wanted $600. I got tons of responses and I settled on this one guy because he was living in some southern state and he said he was getting transferred here and needed a place ASAP and I felt really sorry for him because who wants to live in the South?
When we first talked he said “I’m going to be up front about this and if it’s a problem say so: I’m gay and black.” I said, “that’s cool and now I don’t need to apologize after I tell you that I’m crippled and you should also say something if you have a problem with that.” He was a pretty cool guy but he had to wait until they actually filed the transfer and he wasn’t exactly sure when it would be.
I told auntie L and she seemed put upon but after her misstep I thought this was a quick solution and it would take something off her plate so I didn’t have to rent my room through her. She was pretty disbelieving that I got someone to pay $600 and said we would have to see if he would actually pay me.
She also suggested I get a lock on the front door that’s code activated since she always lost every key I gave her and I tried to be noncommittal because that’s not a good idea and I wouldn’t even be able to use it on my own but the next day she had it and told me I didn’t have to pay her back. Everyone told me it was a bad idea and I said that I knew but I wanted to appease auntie L because when she gets mad she loses her fucking mind and I just don’t have the energy for it.
Savage told me that auntie L sounded like a conniving bitch.
Meanwhile, two of my ceiling fans weren’t working and logistics suggested I have an electrician come out to make sure everything was fine. Both fans are in the same electrical row and years ago an electrician told her that we had a wiring problem since some of the outlets in the kitchen stopped working but I wasn’t sure if he was just saying that. I live alone and I can’t open the door.
So I decided $90 for peace of mind was better than burning alive. Auntie L happened to show up when the electrician was there and she lectured me very loudly in front of her granddaughter that she had brought, my caretaker, and said electrician who was waiting for someone to tell him where to go. She was appalled that I would spend money on an electrician when obviously all I needed to do was replace the fans. How could I have the audacity to spend that type of money when I constantly say I have none?
…I did say I was broke quite a few times. I never asked for money. I was mimicking the Basic Bitch™ conversation starters that people like my auntie L uses. It’s either about the weather or about how they are broke so I thought I responded accordingly, “yeah, the weather is crazy” and “I hear you, I’m already broke this month too.”
(＾A＾) ̿ ̿’̿’\̵͇̿̿\з
What did she want me to say?
Every someone says that every Gods damn month. We are all broke. Always. Capitalism is killing us. There are two types of people in this world: people who complain about not having money and people who quote Marx at dinner parties.
This is when she told me that she hated how I kept myself at a distance, how I always placated everyone, I don’t know how to be a part of a real family. She said that family doesn’t ask each other for help, they just help each other. Family doesn’t thank each other, they already know they are appreciated.
Does that make any fucking sense at all?
First of all, unless you asked for help how would someone know you needed help and second of all, it’s fucking rude not to thank someone.
A few people have complained to me about my insistent apologies for being a burden and over–thanking people. I get it, no one actually wants to have that conversation and we want to shed our Protestant roots by letting go and being a little less polite and a little more awkward conversation. I am actually working on that.
Auntie L apparently has the complete opposite problem. I told her frankly that I couldn’t stop speaking formally like that entirely because she is my aunt and also I was always going to have abandonment issues no matter how hard I worked on it. She said no and that I needed to correct this behavior.
I promised to try and in exchange asked that she try to control her anger.
She said no again, she said that’s just who she was and everyone knew that when she was mad she says nasty things that she doesn’t actually mean so I need to do shrug it off and wait until she cools off.
She then attempted to go for the jugular; she told me I don’t know how to love and that I am nothing like my father. I love my dad, I take after my dad in just about every way, and I lost him at the inconvenient age of 12 and also 13 since all the memorial because I had my birthday that week. People have always complemented me or insulted me by telling me that I’m just like my father. I didn’t appreciate it until I was older and all the things he used to say started to resonate with me like “never speak to the police.”
This insult didn’t hurt my feelings thanks to my big guard that was up but I don’t know that it would’ve hurt anyway because after I accidentally laughed out loud I felt really bad for auntie L because what she was trying to do was cruel so obviously she was overstressed because she was behaving erratically.
Savage dared me to mark her words, that woman is plotting.
She had worked at places like that before and she was telling me the exact same things that my friend, Star, in another state who works in a similar facility was telling me.
Mom went into Golden Living and I was really nervous because I couldn’t go. To use the public transit going out of town requires an in person interview to verify your crippledness and they couldn’t get me in for another few months even though I had just been approved and awarded with the cripple bus pass for my city.
I laid down after mom had left to get a nap…I was home alone when auntie L let herself in, stood at the edge of my bed, and woke me up with a loud lecture about how I pacify people. She was really doubling down on that word and I admit it is a spot on adjective for my behavior. After she was done with her lecture she turned around and walked back out of the house. I could do nothing but lay there and wait for when my caretaker would come back to help me out of bed.
There are two things that made me admit Savage was onto something:
1. Just like my uncle she wanted to see my see my financials. Ironic that she called his actions deplorable.
2. Auntie L busting into my home to waking me up by harassing me was the “other shoe to drop,” as they say.
She did something similar when she was angry that May called my doctor’s office to ask if one of my prescriptions was being processed. I specifically asked her to do that because I was laid up in bed with my ankles and knees and wrist broken and couldn’t do it.
This was about three years ago, I think? Auntie L tore into May for overstepping her bounds and then she let herself into my house, stood at the edge of the bed, tossed all of my medical cards she was using onto my desk and said that she was done with me. If I wanted to do so much on my own then I should go ahead and do it, she wasn’t going to stop me. May could take care of it all. May thought she knew everything anyway.
I was with May when she was on the phone being rented at by auntie L and she emphatically apologized for any misunderstanding and tried to de-escalate everything by making self-deprecating jokes. It was demeaning, it was something I do every day many times, but it was demeaning and May kept with it despite my insistence that she stop. The situation in no way shape or form should have led to an argument let alone disowning family.
The only reason I forgave her is because May insisted, because if auntie L left I would have no one to help me and she asked that I not give her the guilt of feeling responsible… It was a very good argument. I played along and said things to placate auntie L but they were all true.
“I’m sorry about this.”
“I feel horrible.”
“I just want to get past this the best way possible.”
“I understand what you’re telling me.”
“Let’s just say that everyone is sorry and forgiven and move on.”
And I did forgive.
I didn’t forget.
At this moment:
Everyone that went to visit mom said she was great and was actually okay with being there because she thought she was working there or that she was on vacation but almost immediately auntie L texted me that I had to cancel my renter because my mother was being sent home. It was Thursday night.
I called Golden Living Friday morning and said that this is not a safe place to come home to because it’s only me and I can do nothing for her. I asked if there was any way we could transfer her to a different facility. Auntie L had no contact with me but called May’s mother and cried to her about how…
I don’t know. Neither May nor her mother could decipher what her actual problem was because she was bawling inconsolably. May’s mother suggested she, auntie L, and myself get together on Monday since my mother’s discharge was moved to Tuesday and I said I was up for it.
I asked May’s mother what I should do and she said, “I have no idea.”
She said that I know how auntie L is and all I could do is tell her what she wants to hear. I argued that would be pandering, the exact thing auntie L said she didn’t want me to do. May’s mother told me to give up and then we had the meeting…
Yet another discussion about how I never put my guard down and how I wasn’t trying to be warmer so I said to hell with it and decided to put my cards on the table. In a nice way. I decided to tell them both the thing I wanted them to understand the most because this might be my only opportunity.
I tried to explain that her coming into my house triggers my PTSD and I asked that I not have to go into detail about why that is.
I tried to explain spoon theory.
I didn’t: spoon theory by name because I offered it to everyone many times and very few people read it, even fewer treated it like it wasn’t a complete joke.
I tried to explain that finding out on Friday mom was coming home and the fact I didn’t hear from auntie L all weekend but Sunday I found out that she was crying about something I had done, and then on Monday we had to have these West Bank negotiations while my mom was leaving the next day when I was going to be gone at an appointment and I had a second appointment the following day. I didn’t know if I could physically bear it and I wanted to use that Monday to sleep so I could make it.
Needless to say I ran out of “spoons” after that week. I kept blacking out, I was sleeping a lot and I didn’t eat, my judgment became impaired, I had consistent diarrhea, I was doing whatever it is I do in my sleep when I have a lot of anxiety that makes people come in my room while I’m sleeping and ask why I’m crying.
Auntie L went on vacation out of state for two weeks, magically Golden Living was able to keep mom until auntie L got back where it is up until then it was a dire emergency that she come home immediately. She didn’t leave before telling the staff at Golden Living and my own social worker not to speak to me because I’m a liar.
I called Golden Living Tuesday morning and I spoke to Nicole,
Nicole refused to let me talk to Arman who is in charge and kept insisting that “he isn’t here anymore” even though she admitted that he’s going to be there on Thursday.
I agreed to talk to her for now and that I know she couldn’t disclose anything personal to me because I’m not on my mother’s contact list but I’d like to know if my mom would be able to be transferred somewhere else and Nicole responded by telling me that I was lucky that auntie L was helping me because the rest of my family abandoned me.
“your family abandoned you.”
Auntie L put May’s mother as the emergency contact without asking her or telling her about it. I was talking to Nicole yet again on speakerphone and she told me that I was wrong, that May’s mother had been there with auntie L and she said she would be the emergency contact. I had no idea that May’s mother had come into the house and was listening at the door but at that moment she was suddenly leaning into me and telling Nicole that what she just said was a lie.
She pulled a total Batman.
I busted my ass to get all my documents in order and protect mom is much as possible and auntie L is due to be home in a few days and she’s been texting everyone
I know I’m petty but she doesn’t know that May’s mother was with me listening to the conversation and she can verify I didn’t yell or curse and that just makes me so happy… But,
What the fuck do I do?
I have no idea when my mother is coming home or what state she’ll be in, if there is anything being scheduled with a doctor, she needs to be comfortable while she is here but all I have time to do right now is gather some things she likes around her bed, she gets so scared at night and she hasn’t been here in a month so I’m afraid that when she hallucinates she might hurt herself again and auntie L said (and Savage and my other friend verified that) I have to take her to the ER and tell them I’m not capable of taking care of my mother then leaving her there.
No one ever says that the reason having a relative with dementia is so difficult because the state makes it that way. Imagine how much money, time, and resources they would save if everything was done efficiently.
Dumb sons of bitches.
But auntie L said if we do this mom will “belong to the state” and “they will have to take care of her.”
I had a movie montage flashback to all the times someone had said that I belonged to the county while I was growing up.
It occurred to me then that a lot of the problem is that they are entering my world, the world of disability. Mom is joining the community and the rest are dropping by but they can’t comprehend anything they see because they are so sheltered. They had no idea what it was like to degrade yourself many times daily just to survive. That these statistics of murder and rape were real when they had never heard it being reported on. That instead of getting ready to go out by fixing your hair and makeup you have to take painkillers and lay down for as long as possible.
Auntie L then informed me that I had to keep mom at the house for at least a week and couldn’t call 911 if anything happened because then they would take her to the ER and then she would get sent back to Golden Living who would have to send them back to us.
I mentioned that she was already choking me before she had even left and she literally told me to “try to survive for at least five days.”