I guess it’s been exactly a year since I started blogging. I started writing with the intention of gaining some perspective in my life and it totally worked. I’m right and everyone is terrible.
At the start of the year I had my trusty neuromuscular disease which makes it impossible for me to physically care for myself, my mother’s Alzheimer’s had gotten to the point where she could no longer physically or mentally care for herself, auntie had been in my life for a few years helping me try to get her medical help and deal with the endless paperwork x2 that comes with disability. She was the only family member that even pretended to make an effort in my life, but the stress of it was obviously getting to her.
And I was losing my god damn mind so I started this blog.
The major thing I realized is something I already thought I knew; being disabled is like being in a completely different reality that normal people only have some vague sense of, like gravity but really can’t comprehend. What I specifically learned throughout this year, though, is that they willfully remain ignorant because of their narcissism.
That sounds incredibly rude but in some cases I mean it in the nicest way. Some able-bodied people simply never learned that TV isn’t real. When they hear anything about the reality of living a disabled life and how it has nothing to do with your health but everything to do with violent bigotry they try to convince you that any bad situation is an outlier. ABs refuse to acknowledge disability to avoid feeling guilty; those people legitimately don’t know how common and easy it is to step over a dying body while complaining about the smell.
There are some people who genuinely don’t know better and so they are eager to help, impatient for the praise. It’ll get them praise, but they can’t handle it for long.
For my Mormon uncle it was the very minute that I called him to let him know that his sister was sick that he became overwhelmed and he insisted we both be sent to homes. He had no idea why I was so opposed to the suggestion because it wasn’t as if anyone would want to rape me or anything.
I know I heard that clearly because he was screaming it through the telephone.
Auntie pressured me into putting mom into a home and then to make sure I can make no decisions she told them I was mentally ill and all around general liar so I wasn’t allowed to have contact with my mother. After mom got kicked out after week for unruly behavior I found out from the carefully worded discharge papers that she had been raped in the shower. Whether Auntie knew that are not I don’t know but it was the last time I ever saw her.
Up until then, though, Auntie worked incredibly hard to help us but the weight of sainthood became too much. There were multiple times where she would throw my medical cards at me from the end of my bed while yelling at me for not knowing how to love correctly. To her credit, she wasn’t completely wrong.
She said I was being condescending when I constantly apologized for being a burden and then I halted every conversation with the incessant need to thank everyone for just being there. True. It took me being forced into a role-play game before I really understood that.
I like helping people out. I like seeing people relieved and happy when I can unexpectedly provide a solution. I like feeling that I can have at least a slight impact on other people that isn’t horrible.
What I don’t like is people making it weird by being awkward, thanking and apologizing to me every few seconds. When they insist on thanking me it hurts my feelings because it seems like they’re surprised I would do something nice. When people won’t stop thanking me it’s alienating. When someone puts you on a pedestal is not only objectifying but lonely because you’re no longer equal.
What I still don’t understand is what the hell I’m supposed to do.
When I go somewhere I have to get their permission to go. When I do something I have to get their permission to do it. When I eat I have to have proven that I’m worth the waste and produce.
How can I not thank them?
How can I take the risk of not thanking them?
It used to infuriate me and people told me I had no idea what the “real world” was like when the only world they know is Pollyanna’s but now I can’t help but agree. In the real world you don’t have to pretend not to know your friends in public. In the real world you go to the police for help instead of avoiding them. In the real world you don’t apologize to other people when they hit you. In the real world strangers don’t tell you that your God’s punishment on humanity. In the real world you check the mailbox for bills, paperwork to fill out for permission to live for another month.
In the real world a real person wouldn’t have their healthcare taken away for having an extra $100 in the bank, a real person would be allowed to have more than $2,000. Especially if everything was as expensive in the real world as it is here.
Even after a year finally coming to terms with never getting the promotion to human I’m happier than I’ve ever been in my life.
Although I have to fight for it every day I’m still living in my home, unlike my ancestors. Even if I’m not allowed to own it.
Also unlike my ancestors I’m trapped inside my bedroom but I have the technology to talk to people all over the world. Not people from the real world but people like myself who are going through the same things that I am. I never know how long I have them but thanks to the sheer number of us I’m never alone. More and more of them grow exhausted and are forced to commit suicide but it’s a less lonely than it would’ve been even just over a decade ago.
We have the ability to communicate and create things as long as it’s not in exchange for currency and because of that and realizing that there are people in the real world who do care about what’s going on in the outskirts of The Real World™; AB and NT people my age, millennial’s who have helped me survive with much more dignity than any other American generation has before them.
I’ve proofread homework in exchange for dinner. I’ve written essays on Deadpool in exchange for toilet paper. I’ve reviewed movies for hair dye.
I have no hope for society itself but I have hope for humanity now that I know that there are people unlike my family but things haven’t changed enough for me to even have a conclusion to this post. Still, I have the ability to make this post and as pathetic as it is I’m thankful for that.
1. Able-bodied man gets disabled doing sports or during military service, he is paralyzed from the waist down. Able-bodied woman loves him because he’s nice unlike like other guys. He is bitter, she is inspires him. Able-bodied woman knows more about the disabled man’s disability than he does.
2. An able-bodied woman working in healthcare, usually physical therapy, falls in love with a disabled man who has been paralyzed from the waist down due to sports or military. He is bitter, she is inspires him.
3. Single able-bodied mom falls in love with a man paralyzed from the waist down because of sports or the military because he is a nice guy who let’s children ride the wheelchair in his lap.
4. Able-bodied woman reconnects with a man, previously knowing him as able-bodied, but she is paralyzed from the waist down due to sports or military.
5. Able-bodied woman falls in love with a man paralyzed from the waist down due to sports or military despite his disability but then he gets better.
Bonus tropes: the disabled hero is left by his fiancée when he becomes disabled and doesn’t want to fall in love again, the able-bodied heroine is recovering from an abusive relationship
The characters have a romantic and sexual chemistry, if you don’t feel that I don’t know that you really feel what makes it horror. Sang Woo is intentionally handsome, in the most conventional ways just like Bum is even intentionally physically weak from the start.
If there isn’t something between them that you can actually feel the story doesn’t work IMO.
Sang Woo is given a lot of redeemable qualities and what some might justify as “good reasons” for at least some things he’s done in the past. Not only does this make him a three-dimensional character it also makes you empathize with him which is why when Bum thinks that he loves him you believe him. Not that it’s what love should be but that what he feels is real.
You can’t victim blame.
When he reaches a door and hesitates a good writer and artist will keep his perspective squarely in view even without dialogue. Just the shot of him at the door makes your chest tighten and your heart speed up because you feel the emotional context whereas someone who isn’t reading can see the panel and not find it disturbing.
That’s a beauty of horror. It’s subversive in a specific way that makes violence, blood, gore, etc. the least off putting things in the story which is why horror movies are so over the top with all of it or don’t show it at all as in the early Hollywood films. Horror makes you afraid of mundane things, that’s why it works.
This shot from Scream is pretty innocent but it’s an iconic image from the movie. It’s a meme people use to represent the movie in its entirety. No one is being murdered or harmed or even scared. Yet. You can see this in a G rated movie.
That’s horror. That’s why some people are fans of the genre.
So, am I okay with shipping them by putting them in fanfiction that derives from canon, whether it’s an AU or not?
Sang Woo is scary because the audience can’t help but love him on some level, even if just in empathy for Bum’s feelings.
If you are a writer, even a fanfict writer, it’s agonizing to not stop the script and end it the best way possible.
If you are a good writer, you wouldn’t be adverse to writing something hard enough to make a happy ending believable.
And if your readers finish your story and feel safe, or calm or happy then you were successful because you were able to subvert the subversive canon by manipulating their emotions so drastically.
It helps that fans love him, even as just as a brilliantly written character, but therein lies the challenge of fanfiction. Can your fix–it actually fix–it better than someone else’s?
It’s a game that people have been playing for centuries and is the reason for most Western canon.
David was discovered trapped in a concrete box and once he escaped he was transported forward in time where Bishop resided. It was a dystopian future and David was immediately captured and put into slavery.
Before we begin let me preemptively respond to your complaint: I talk about neurological divergence because, guess what? Some cripples are mentally ill, Becky.
FX aired a new show called Legion this year based off of the character Legion from X-Men. The show exists in the XMCU which means he lives on Earth-10005 or Earth-TRN414 (it involves time travel and everyone has their own opinion) so it’s the “real world” except mutants exist and therefore so do the X-Men. The MCU with the Avengers and such have absolutely no relation outside Easter egg jokes.
I’m going to give you a summary of Legion’s canonical history that the show Legion was based off of. Legion from FX diverts from the source canon but constantly makes callbacks to it which takes it from and incomprehensible show to just pretty confusing.
I don’t feel like I’m selling this as I intended… The show is the most amazing thing ever made and despite my affinity for comic David I actually like it more than the comics. That’s a big deal. If I had said that in certain circles I would be killed on sight.
Legion is a Jewish kid named David Haller and the the son of the most iconic disabled superhero, Charles Xavier. David Haller was never more than part of a secondary cast until a few years ago when Simon Spurrier took over X-Men Legacy and made David the star.
Legion’s real name is David Charles Haller, a Jewish man from Haifa Israel who canonically can’t grow his hair into anything but a gigantic mohawk, and he is an omega level mutant which means he has practically God–like powers.
His father is Charles Xavier, Proffessor X himself, but his mother, Gabrielle Haller, kept that a secret for a very long time. Gabrielle met Charles at a hospital where he was using his psychic abilities to alleviate trauma of the Holocaust survivors. They had a short fling in which David was conceived but Gabrielle, suspicious of his psychic abilities, kept David a secret and David’s godfather, Daniel Shomron, stepped in to help raise him.
When Gabrielle entered the Israeli Diplomatic Service she and her family were attacked by a Palestinian terrorist cell. Gabrielle and David survived, but Daniel used his body to shield David from the bullets and was killed. The trauma activated David’s mutant genes early (he was 10 years old and they don’t usually manifest until puberty) and as his psychic abilities turned on he killed all of the terrorists. David went comatose and absorbed the psyche of one of the terrorists who took control of his body, still comatose, and fought the growing alter egos forming in David’s Mindscape due to his DID
Gabrielle turned to the renowned geneticist Moira MacTaggert, coincidentally another one of Charles Xavier’s ex girlfriends, who insisted Charles come to treat him personally. Charles found that David had very similar mutant abilities to his own, only much stronger, then found out he was his father.
By joining the war in David’s Mindscape Charles was able to wake David back up and most of the alter egos were destroyed but they continued to develop unchecked.
Legion/David gained and lost control of himself many times, hurting many people even murdering Destiny, Mystique’s wife, when she tried to intervene with him and he saw through her precognitive abilities how devastating his future would become.
David decided he would realize his father’s dream of mutants and humans coexisting and to do that he traveled back in time to his own conception to kill Magneto who Charles was also with at the time.
Time travel shenanigans ensue and Bishop ends it by showing David what future he is actually creating. David was ashamed and in the reconstructed timeline he was thought to be dead, his mother even questioned his conception.
Years later David was discovered trapped in a concrete box and once he escaped he was transported forward in time where Bishop resided. It was a dystopian future and David was immediately captured and put into slavery. He got out of it somehow, these sort of things happen quite a bit to him. The X-Men finally took him in and Karma and Magik began working with him to get better but he still had major reality twisting hiccups while he was trying to be good but his ever increasing alter egos keep taking over. Meanwhile his relationship with his father continued to be estranged; Charles seemed to think he was too dangerous unless he wanted to utilize his powers or alternate personalities. Magick is the only one that seems to consistently try to help him but sometimes with ulterior motives
Now for the really good part. X-Men Legacy: Legion written by Simon Spurrier.
Up until this point Legion was very inconsistently written because he had been a very minor character but in Spurrier’s Legion series the loose ends of the story are tightened and we actually see David as David. Before he only momentarily surfaced to find that he had caused a disaster and everyone was debating on whether or not he should be put down.
Charles had sent David to a secluded place for rehabilitation and never came back, as is his pattern with David. After the event of Avengers vs X-Men where Charles dies David finally had to face the fact that his father was never going to come for him, he was never going to publicly acknowledge him, and he never planned to let David return to the real world.
When he felt his father pass away David’s power surged and he wiped out the community he was living in, before his Guru died he told David to wait for the X-Men to come to relocate him again but David left, deciding he finally needed to change the pattern of his life, get a grip on himself, and find a way to see his father’s dream of coexistence come true. He does this by making himself somewhat of an invisible mercenary, trying to save mutants the X-Men hadn’t gotten.
David turns his Mindscape into a prison to keep all of the alter egos contained which worked relatively well, all things considered
Blindfold, a mutant nearly as powerful and ostracized as he is, seems to have an instinctual connection to him.
She takes refuge in the X-Men mansion/school but the way she speaks, looks, and is unable to restrain herself from reading everyone’s minds makes her a social outcast
The X-Men eventually track David down with the help of Ruth’s powers
And David isn’t having it
The X-Men try to keep Ruth from him but through their mysterious connection Ruth easily enters David’s Mindscape where she is partially able to speak normally, depending on her mood
She is able to get through to him until one of his altars breaks out and attacks her, knocking her out.
David lets the X-Men take the mutant children he had found and secretly follows them back to watch over Ruth who is now comatose. He enters her subconscious and sees her whole life, specifically her bullies
He brings her back to consciousness and they meet briefly as he escapes
She keeps track of him by following him in her astral body, not understanding quite how powerful he is and that he always knows where she is
He tracks down the radical group her brother had joined and sets out to destroy them and her brother. She “reveals” herself to him telling him to knock it the fuck off.
She makes him promise not to hurt them so he sort of complies by messing with their minds so they will no longer be a threat. David continues on his mission to save mutants and impress Ruth and she continues to be his conscious while they secretly meet on the astral plane
As this is all going on David is trying to deal with what looks like his father’s consciousness personified in his Mindscape jail. The entity does claim to be Charles Xavier and it continually terrorizes all of the alter egos and mocks David, among other things…
The golden pervert, David and Ruth’s inherent connection, and because it’s X-Men everything is leading to a future dystopia where David loses control again but this time destroys everything. Ruth will have to kill him because she’s the only one strong enough and deeply embedded in him to destroy all of the alternate personalities along with David
but David insists that he can change fate. He’s powerful enough and with Ruth as his one that gives him “purpose” he’s pretty sure he can pull it off
But he’s going to do it by changing the will of people that will influence the dystopian future. Ruth argues that it’s immoral, especially to punish people for things they haven’t done yet. It was against Charles Xavier’s dream to force people into anything (although he often did it, unbeknownst to them) but David isn’t empathetic, in fact he already took out Aarkus before asking her permission. Ruth was mad but soon thereafter she sought him out again by using Cerebra
But he had already made a deal with the golden pervert in his brain that in exchange for checking on the future again the pervert could have controlled his body for one minute. (Each of David’s altars personify one of his thousands of powers.) David sees the apocalyptic future he creates and runs off to an ideological facility that “cure” mutants by giving them medication that will give them brain damage, blocking their ability to use their powers. Ruth goes to her peers and the X-Men asking for help to get David out of this but it takes a lot of convincing
David he realizes that although the patients seem to be well their minds are shattered but another apparition of his father appears, reminding him of his failures and making him feel guilty for denying his heritage but David blocks amount and decides to go through with the cure anyway
The operator of the facility reveals himself to be the Red Skull and the one that caused him to see his father because he had implanted Charles Xavier’s brain into himself, hoping the shame of giving up would make David want to fight but David still doesn’t want to
He is given the medication and they air his conversion live on TV
Ruth appears with X-Men she had convinced to come help her save him which is what the Red Skull had apparently been aiming for and the X-Men are live on TV appearing suddenly in what appears to be a peaceful facility to stop a man who admits to being a monster from “rehabilitation” but David had planned on him planning this and uses that moment to bring in a young mutant he had saved earlier. The boy’s ability was that everyone immediately believes anything he says, practically giving him the ability to change reality. Through live TV he convinced everyone watching that the mutants weren’t their enemy. He tries to evoke empathy but that doesn’t work as well
Of course a battle with Red Skull ensues which is when the golden pervert who looks like Charles Xavier comes to take his one minute with complete control of David’s body. He wants Xavier’s brain for himself.
Ruth fights to get the minute to run out so David can take control of his body again and then we have this really funny moment
When I first got that call from Nice Guy everyone was so excited but I kept telling them not to get their hopes up and lookie lookie here, I was right. It wasn’t just pessimism. But pessimism had a lot to do with it.
In our last episode I said I was done. Well, I’m even more doner now.
After all this time it seems that auntie and I finally have something in common; we’re both done. But our “done”s are pretty different.
Remember Auntie said she was going to take mom to lunch? Of course you don’t. No one is reading this shit. Well guess what, when I asked her what time she went on radio silence.
Then I tried to explain the spoon thing again despite the fact I know it throws her into a rage. She literally disowned me the first and only time I gave it a subtle shot.
Did that sound condescending?
I really tried my hardest. This is the first text I sent her without running it by anyone to proofread for anything that could be construed as insulting. I just went with how I write formal emails. Unless she wants me to speak in AAVE I have no other options.
And it would just be my luck that she would trick me into something racist like that.
She recently texted me asking for the infamous door alarm.
That, apparently, was the wrong thing to say because then no one heard from her and like three days later her daughter, whose name I censored first, showed up one afternoon for it but said she couldn’t stay because her kids were in the car. It really made mom depressed because she was so excited to see her. It’s heart wrenching.
So, I guess when auntie said that she was done what she meant was done sticking the knife in but not twisting it.
I’m fucking done.
Like I said, I don’t think about my auntie unless someone brings her up but that void was quickly filled with IHSS.
And now I’m done with them.
I still have not heard from my caseworker/social worker. Let’s call her Amy Hoe. The one time she talked to me all she did was whine about how hard she used to work before she “got burned too many times.”
She did call once but I was here alone with mom and couldn’t get the phone. I then left multiple messages, all sugary and sweet like last time, apologizing for missing the call and I left my phone number, my address, and my email address. Each week. I left messages in every department, trying to find someone who will least call me back about how to get more hours my caretakers. No one called.
It’s been a month.
11 days ago someone from payroll accidentally picked up and told me to call Amy Hoe. I know better than to talk shit so I told her that Amy Hoe said she would be “out on the field” for three months. She insisted and I hesitantly, and awkwardly, said, “um she said she was going to be busy and I haven’t gotten her to call me back so I was wondering who I can speak to instead in the time being?” No dice. “I really do think she was serious about being out of contact. She seemed pretty stressed. I know it’s hard; social work is horrible. She just said she was little burnt out by going out of her way for people.”
Dice on fire.
How is that insulting? I was obviously choosing my words carefully (badly) but the chick isn’t responsible for going out of her way so long as she acknowledges that it was her choice. Bad things always happen to good people.
I’m not dumb, I know this sounded insulting but she was trying to hang up and this is the first I had spoken to anyone in a month and all that happened then was a promise to call me back.
Apparently they are BFF because she immediately shouted, “she would never say something like that!”
I said, “well she did.” She tried to bite her tongue and said “that doesn’t sound like something she’d say.” And immediately transferred me to someone’s voicemail.
Idea for a movie: IHSS is actually a secret government agency that gas lights the most impoverished citizens as a way for the Illuminati to make turn America into inspirational porn to broadcast to the aliens.
I hired that caretaker I was going to interview. Let’s call her Princess. She’s in her mid-20s and she acts like it. Savage rightfully pointed out that she was both unaware and reckless with her white privilege by saying, “she’s white.”
She really is a nice girl but she actually told me she misses high school.
What do you say to that?
All I could come up with at the time was, “ew.”
So what did that payroll lady do? She connected me to some guy’s office whom, she made sure to point out, wasn’t there so I would have to leave a message. It turned out to be a supervisor who called me back pretty quickly and was very apologetic. He seemed nice but I’m smart enough not to trust anyone. Ever. About anything. Ever again. He helpfully told me things that I should ask Amy Hoe about when she does a home visit, which would be soon or he would do it himself or… Oh, Amy Hoe never came out and never spoke to me other than that one phone call in and entire year? Then he looked at my file to see who had come out and it was that guy.
That guy, that superduper supervisor everyone at IHSS stands on their desks and recites O Captain! my Captain! to was the one that came out. The one that told me that IHSS would give me back pay and lost me thousands of dollars which, of course, is on one of my maxed out credit cards. He laughingly suggested that that guy should be the one to come out again.
I emphatically asked him not to reprimand Amy Hoe, twice. I’m not trying to start any trouble. I’ll do whatever. I’d suck a dick for some basic human rights.
Yesterday the was Friday before Labor Day weekend and I was over with the world. This is always a hard three day weekend for me and not just because of the labor irony, this is the weekend they used to play the MDA marathon but thank God this year Jerry Lewis is dead.
I meant to be facetious, the only time I ever knew it was Labor Day weekend was if someone told me directly but this year it was different. Maybe because everyone left so this was the first weekend in a long time that it was just me and my broken wheelchair.
Did I mention my wheelchair is broken? It’s been broken since before I even started this blog and I’m still fighting with insurance. I’m extra crippled so I use this electric chair and now it only holds a charge for about an hour or two of actual movement; this is a big reason I only eat once a day and even then sometimes I don’t bother. BTW, this is why you should be kicked in the kidneys if you’ve ever used the phrase “wheelchair-bound.
Did I check the battery? Of course I fucking did. That’s as stupid as asking someone if they restarted their computer. I’m a professional cripple™ so I think I know what I’m doing.
Except that I rolled the dice and put out for a new battery on my credit card when the insurance wasn’t going to do anything, then it turned out to be the actual wheelchair that had finally died.
My wheelchair is over 10 years old.
You are supposed to get a new one more often than that but the last time I needed to replace this wheelchair this mother fucker the salesman did exactly what I knew he would, exactly what all of those people do, fucked me because he was on commission. He ordered the most expensive thing and added everything he could despite my specifically saying not to put anything on the order after it was out of my sight. I couldn’t even sit in the thing because as soon as I did I would slide out. There was so much machinery around me that I couldn’t have driven it if I wanted to. I insisted he take it back with him. I had to yell at him before he took it. He told me I couldn’t get another one and he was right.
They told me I had to wait five more years and here I am.
Here I am…
I called This Dude at 3 o’clock Friday morning, spit out all the serial numbers stamped on me, and explained why I was up at 3 o’clock in the morning. My caretakers have too little hours. My mom is getting worse. I’m getting worse. I have to stay up all night to keep mom from leaving the house even though all I can do is sit in front of the door. With no assistance I hadn’t been able to go to the bathroom in 12 hours.
Then my voice broke so if I had pulled off sounding like I wasn’t crying it was game over. I quickly asked him to call me back and got off the phone.
This “nice guy” never called me back, of course. No one did. It’s been a little over a week.
When I first got that call from Nice Guy everyone was so excited but I kept telling them not to get their hopes up and lookie lookie here, I was right. It wasn’t just pessimism. But pessimism had a lot to do with it.
PS. Because of some paperwork auntie took from me back in what they tell me was May I owe Social Security $800 for the error and my disability is still $3.
Seeing someone in pain usually triggers empathy and so you would assume friends and family naturally join the in as allies but it depends on what a person internalizes within those 30 days.
I was on Facebook (it’s the cheapest form of assisted social suicide) and I saw this really interesting comment. These sentiments aren’t exactly unique but I think it’s really well put so I got there permission to share
There is actually a pretty good reason for this 30 day grace period. If you want to lose a habit or gain one a fundamental way to do that is to stick with that behavior for 30 days. All behaviors and thoughts have specific neurological signals and the more you use them the stronger they get, at about the end of 30 days these neurological signals can become compulsive and not necessarily need to trigger.
Seeing someone in pain usually triggers empathy and so you would assume friends and family naturally join the in as allies but it depends on what a person internalizes within those 30 days.
People are socially pressured into carrying about people they actually don’t. It may not be malicious, but many people will be there because it’s just the right thing to do, not because they love you. They love themselves and they love their social standing. The reason the social grace time and the neurological capabilities in NTs last only about 30 days is because of that old pagan saying “as above, so below”; we create social models based off of our neurological capabilities.
To stay beside someone who is disabled you have to have a special abilities. Essentially, you have to be neurologically divergent, mentally ill, to be able to love. It’s reasons like these that people who aren’t disabled have so many special needs.
This is why the greatest strides in our civil rights were made once we were allowed to interact with each other outside of barred hospitals.
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.
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.”