I hate memoirs. If you live a life worth being studied someone will inevitably do a biography on you so stop being so presumptuous. When I started writing (publicly?) people always assumed I was writing my memoir because they say you write what you know and people assume that if you’re in a wheelchair all you know is about extended sitting. When I said no, I hadn’t written my memoir, people encouraged me to try. I have funny stories. I have scary stories. I’m vaguely personable. Obviously everyone would love to read about my life.
What would really annoy me is that I knew they wanted me to give them some Secret Garden shit. No one really wants to know about disabled people’s lives. I spend 90% of my time and energy trying to keep able-bodied people sheltered from disability. All disabled people do. Well, unless you’re one of those douche bag guys that fell down while bicycling and now tours elementary schools to tell kids that you’re still a person.
My opinion changed when I suddenly became an adult one day. I saw young teenage girl on tumblr complaining about a specific type of oppression in schools of disabled kids that I had also gone through and at first I was so excited, I so rarely see people who had childhoods anything like mine. But then I realize that she was a child, that she was going through the very thing I had gone through nearly a decade earlier and I felt responsible. I know about the horrible things that are going on and I know that children out there are suffering these things right now, and they have no idea what’s coming next, but I do.
But my life is a shit show, what can I do? I live in abject poverty. I have a terminal chronic illness. I have no resources beyond what Google offers. But I started posting little anecdotes about myself and what it was like growing up disabled and I was overwhelmed with how relieved disabled people were to see something relatable, as I had been, and the able-bodied people were aghast.
This micro concern, to me, came at a time in my life where the world had come to an end again.
My mother and I never got along, my father raised me and I was very close to him but a week before I turned 13 he was killed in an automobile accident. At that same time my mother got laid off and my father’s parents had just died so what little glue that did hold the family together was now completely gone so we were left pretty helpless. Of course, that’s when I get informed that my spinal atrophy had caused me to have scoliosis so bad that my spine was bent over and was crushing one of my lungs. I either had to go in for multiple, extensive, dangerous surgery or I could wait about a year and slowly suffocate to death.
That was the beginning of my first rock-bottom.
My second rock-bottom was right out of high school when I started to get stomach pains. Excruciatingly long story short, I had a bacterial imbalance from some bad food but the wrong dosage of medication was given to me at the hospital and in a Rube Goldberg style medical care in attempts to cover up mistakes that led me to be on my deathbed. My intestines had been all but eaten away in my stomach was destroyed. Blood was coming from my nose, mouth, and anus. I had a hard time staying conscious.
The third, and most recent, time was when the water and electricity got shut off.
Mom had obviously been developing dementia for years but she refused to the doctor, she said it was simply “old age” which I tried to explain was not a legitimate diagnosis but she felt ashamed and frustrated given how bad our lives had been up until then. The only actual friend I had was May and it wasn’t like she could persuade my mom to do anything. My fraternal family is all local but we had completely split apart after that rash of deaths, I kept in sporadic contact with my auntie L but she was a single mother with three children and I myself was a child for most of my childhood so it’s not like we were really going to hang out or anything. My maternal family, which I never considered my own family because I grew up with my mom explicitly telling me that my dad’s family were losers and I belong to the family, her family was her own. They are a big extended Mormon family and as my generation had reached adulthood everyone was scattered across the country.
One day the water and electricity got shut off and I found a word of unpaid bills for three months that mom had just dumped. When I confronted her she was completely apathetic and said she just didn’t care anymore. Mom was always theatrical and constantly bemoaning her fate so that wasn’t anything new but the apathy was, my mom only had two emotions: anger and suspicion. Apathy meant some major neurological revisions.
Mom had racked up about $20,000 in credit card debt. It’s not like she bought anything extravagant, she just never worked after dad died. She had us both living off of my disability and credit cards. Mom had also bought a used van because I need one that has wheelchair accessible and the old one had broke but this one constantly broke as well. Mom tried to return it but she was under a bad contract and every year we ended up spending a couple thousand dollars to fix something on the car that never seemed to work. So, it’s not like that money went anything fun.
I took over everything and I covered for mom who was still refusing to see a doctor. At that point she admitted that something was wrong but argued that if she went to the doctor and they diagnosed her as having dementia my social worker would probably take me out of the house and put me in a home because my mom was my primary caretaker. I made it for a while but eventually I was only allowing myself to eat once every three days and it was always pizza because I’m too disabled to cook and they are all we had near at the time. When things got too smelly I would order us new pairs of pajama pants to wear off of Amazon because neither of us could do the laundry.
Yada yada, I made very thorough suicide plans. It wasn’t a dramatic thing. I just worked out what I thought I could do over the next two years to get mom insurance and everything else she would need and then to put all of the affairs in order since mom wouldn’t be able to do that on her own and then I was going to kill myself because I wasn’t going to permanently move into a home. Fate worse than death. I shared my plans with May and she insisted that calling my auntie L and asking for help should at least be on my list before suicide and auntie L decided to step in and help me. She has been the only one. Initially my grandfather paid off one of my mom’s credit cards saying that would count as her inheritance which was incredibly generous and I appreciated that he attempted to help with money since he couldn’t help physically but after that whenever I spoke to him he informed me that I needed to just give up and move both my mom and myself into a home.
He also called on my 30th birthday, my landmark birthday of living with a terminal illness my whole life, and told me how much he loved me and how fervently he and my grandmother pray for my death each night so I’ll be able to “run in heaven”
I would rather sit in hell.
Luckily for me, I just had to fill a friend in about all of this so here is the email I sent him:
I don’t know what you know and what you don’t know. I don’t know all of what anyone knows which makes every “how have things been” very tedious. Forgive me if any of this is old news or if I just start being absolutely confusing because my memory and cognitive abilities have taken a nose dive from all the stress.
Mom has Alzheimer’s and refused to go in for treatment. I was told growing up that mom’s family is not my own so I didn’t go to them for help and my dad’s family who haven’t sent out their cease-and-desist letters yet are just my auntie, her three children that are about my age and their very young children. All of them have extremely busy lives, intense careers and children to prioritize. If I went to any of them for help I would never be able to repay them and it would take time and money away from my cousin’s children. I figured it also didn’t really matter because I was nearing 30 and the doctors had promised me I wouldn’t make it past that so I was trying to bide my time and take over mom’s finances so one of her family members could easily transition into helping her when I died.
Things were beginning to become unbearable. At some point I couldn’t get either mom nor myself to any doctors appointments because the car completely died, we would eat about once every couple days and that tended to be whatever could be delivered to the house. Also, neither of us could do laundry so everything was dirty and so I bought a cheap pairs of pants on Amazon each month. The house was always tidy but if anyone looked close it was obvious that it was dirty and we started getting a bunch of ants. Mom, of course, became more violent than usual and she had already hit the ceiling on verbal and emotional abuse so that stayed about the same. The whole thing sounds crazy but I suppose the situation was a lot like with those women who stay with her abusive husband’s. I literally had nowhere I could go, so literally I couldn’t even leave the house since I can’t get the door open on my own. My mom has been extremely abusive my whole life so I was already used to this sort of thing.
The only person in my life I could actually go to was May but years before when she was going to therapy her therapist advised her to not be a part of my life. People like me always have horrendously depressing lives and May should stop seeing me so she would be less stressed. Without knowing that’s what her therapist said her whole family came to the same conclusion. Of course I won’t tell you why she was going to therapy but it was for something extremely serious and instead of addressing that she was counseled to take me out of her life, although I was totally unrelated and since her family assumed the reason she was going to therapy was because of me, because being friends with a disabled person literally drives you crazy, they were giving her the same advice the therapist was somewhat coincidentally. May went with it, and I don’t blame her because telling her family what had happened just wasn’t an option for her. I feel guilty but there were a few times I regretted forcing her to see a therapist but it’s not like I’m a saint. May took the therapist’s advice and started to distance herself from me, trying to join the circle of friends her siblings belong to whose problems were a lot easier to deal with because they were all healthy and had a lot of money, mostly family money. Then mom kept getting more violent and one day shoved me out of my wheelchair breaking both my ankles, my knees, my wrists, and my nose.
So at that point the cat was out of the bag and everyone had some idea that things weren’t going well here, at least that mom had Alzheimer’s and I let her tell everyone that I had simply fallen. My auntie, who is a good person, forced mom to go to the doctor and tried to start the paperwork having an in-home aid while I was living in a home for a while which was a complete nightmare. I’m lucky nothing too bad happened to me because about 90% of women get raped in homes and while I was there it happened to another resident. I didn’t get out of all the statistics, though, because the staff was pretty bad. My casts were removed because they were put on badly so on top of the excruciating pain of all of those injuries and the fact that I was always given my medication late my legs were constantly being messed with. If I couldn’t keep from crying when I was doing something like changing clothes the nurses would yank on one of my broken legs to “give me something to cry about” and one time a nurse then had me down against the bed and asked me if I was calling for my mommy and telling me how pathetic I was for crying all the time.
It didn’t really brother me because I knew that she could never trade places with me, she wouldn’t last a second, but I learned my lesson and never complained about anything and cried as quietly as possible. I also got in trouble because my roommate was supposed to lose weight as part of her rehab but she would steal my meals and I didn’t say anything. Obviously I didn’t want to complain but I also didn’t care because I was so used to not eating and so incredibly sick from the stress anxiety and depression that when I tried to eat I would just throw up. I felt a little bad that I was ruining her rehabilitation but I figure she was an adult woman and can make her own choices. If she wanted more food she should be allowed to have more food.
My mom’s family was informed about the situation and my grandfather said “you both need to just move into homes” aunt ML said “she’s just getting old, it’s not Alzheimer’s and it was just an accident” and aunt K said, “that’s too bad.”
Did you know the thing about aunt K? My father and both his parents died around the same time so my mom got my inheritance pretty much on my 13th birthday. K immediately asked for $10,000 to buy a new car because hers was broken and mom actually gave it to her saying “it’s not a problem because I know if I ever need help you’ll be there for me” when actually she was doing it because she wanted to impress her mother who she believed hated her but when grandma found out she wasn’t happy and said that K was a narcissist and would never pay it back. Before my accident when I was trying to get mom’s affairs in order and pay off these two credit cards she had maxed I had no idea about I got so frustrated that I called K and explained we were in a bad spot, my mom’s credit card debt was ironically $10,000. I asked if she could begin to pay it back, even if that just meant a few dollars a month. She was immediately furious and said that that it was a gift and I was completely out of line; I’m a very petty person so I couldn’t stop myself from saying “Grandma was right about you, she begged mom not to give you the money because she knew you’d never return it” K went into hysterics and refused to speak to me but mom refused to speak to her because she was so embarrassed to be asking for money but we arranged for K to send $50 a month to pay for half of mom’s medication at the time.
This is all relevant later, I wasn’t going on a tangent.
I wasn’t well enough to leave the home but they evicted me because I was there for “rehabilitation” and as I am disabled and will never be “rehabilitated” it didn’t count and my insurance wasn’t paying for it anymore.
Torturous months go by that I won’t give you the details to but eventually I’m well enough to be back in my wheelchair and after a few months of that I was strong enough to do more than just sit or fall out of it so I tried getting back to my attempt at putting affairs in order meanwhile my auntie L was still trying to get any type of help, even Meals on Wheels but when they say you have to spend a few years waiting they actually mean it. Nearly on the very anniversary of my first fall mom knocked me out of my wheelchair again. This time it was an accident because she was having a confused episode. Once again I broke both of my ankles, my knees, my wrists, my nose, and this time I bruised my ribs, had my front teeth broken out, and had the skin scraped off of half of my face. Did I mention at this time I fell out of the car? That’s probably why it was worse. Apparently it looked pretty bad too because there were a few people who saw me even after I was all mended and cleaned up and just burst into tears. I think that’s a bit dramatic, my heart goes out to the Elephant Man.
I get sent directly home because the insurance isn’t falling for it twice and it takes me about half a year until I can get my wheelchair again, auntie L spent the whole time trying to get anything accomplished and nothing ever did. It again takes me a long time to get enough strength to even drive my chair and of course mom had just been steadily declining and she started losing the ability to cover up any type of violence. Super long story short, my aunt found someone who did caretaking under the table for a friends family member and so I hired her. Auntie L had figured out that as long as we have documentation of her pay and her hours that once the government did approve getting some in-home assistance the government would reimburse me. So, I have no money whatsoever but I do have a credit card and PayPal so for about a year I use my credit card to give her $350 a month. She is a nice woman, I understand she was never trained in anything and being thrown into the deep end like that would have been terrifying, so I let her come and go whenever she liked as long as she made sure mom ate every day and did the laundry. We were having no improvement with IHSS, auntie L finally broke down and went to their office in the capital and threw a fit, threatening to sue so they expedited my case. That was a few months ago and for me to be reimbursed my caretaker had to be verified by the government which means she had to have her fingerprints taken and go to a two hour long seminar which apparently cost her $100. It took a couple weeks to get her to finally do all that. The next few weeks we kept waiting and urging her to feel out the time cards so I could get reimbursed, meanwhile I was still paying her through PayPal because she had to send in paperwork she hadn’t yet for her to get her check from the state. She kept making excuses and the thing was she didn’t want to account for the money because she was afraid of what it might do to her Social Security and was afraid of paying taxes.
My mom’s family never came to visit and for some reason think I’m lying that mom has Alzheimers because until recently she could hold a very short phone conversation that they could justify as her just being slow and forgetful because she was getting older. Mom stopped being able to speak on the phone at all about a month ago but her older brother Cox started calling and I ignored it because, like I said, they aren’t my family and I had constantly been reaching out to them these past few years to at least come visit mom while they still can. Also, Cox has never spoken to me let alone looked me in the eye. I don’t know if he is grossed out by me or if it’s some social status thing because he got in on IBM in the beginning and is extremely wealthy and fucking pretentious. Grandma and grandpa got us all out to dinner one time years ago and it was a little bit fancier than an Olive Garden and mom commented on how good the food tasted and I swear to God, he scoffed and said, “I’ve dined at the finest restaurants all over the world, anything I get here will won’t impress me.” Mom was actually in awe, I wanted to punch him in the face.
Anyway, Cox had been calling at first it just went unanswered and at the time I decided I was going to try to put my feelings aside and advocate for my mother since she couldn’t and I knew that she would have wanted to talk to him. So, I called him and I vaguely explained where her health was at, when and what her next appointments were for, and that we were in debt but on the waiting list for caretakers but we were trying to get expedited. He asked a lot of invasive questions like “well, what are you wasting your money on?” and informed me that I would be sending him my financial records and he would tell me what I needed to cut. I sent him the information because I am very very petty and I wanted him to see proof of all the money I receive each month and that only expense that wasn’t “necessary” was cable but I was keeping it because it was packaged with the house phone and our Internet and was actually the cheaper option. Before he argued that I didn’t need the Internet, I let him know that I physically can’t pick up the phone anymore so I use Skype to make all my phone calls and therefore need the Internet. While I was sending him all that he called the house and because of my luck my mom picked up and he told her that I was telling the whole family that she had Alzheimer’s so I could steal her money (the only money she’s ever had was my inheritance which she gave to K and any thing left over was she spent on redecorating the kitchen right after dad died) she was obviously confused and terrified because I had been trying to get her to believe that everything was relatively normal and he literally screamed over the phone that she need to sell the house and put me in a home immediately. I had to call my auntie over to calm her down and I called him back again and was condescendingly nice and pretended I thought maybe there had been a misunderstanding and he hadn’t heard me correctly but then he literally started screaming at me. That I was a liar and that he knew about K so I was obviously trying to “extort” money out of the family, the only reason I called him was to try to get money at him. To spite him I stayed calm and spoke in a normal tone so he had to stop screaming I told him that the arrangement with K was with mom and each month the $50 went into helping pay for medication. I said that going into a home again wasn’t an option, that they were very dangerous places. He cut me off screaming again saying that i was lying and assuring me that I was completely unrapeable which is kind of a weird complement in a way. I said, “if you’re going to continue to yell this conversation is over” and he screamed, “I’m not going to stop yelling” so I said “this conversation is over” and hung up and haven’t heard from any of the family since. The next day the $50 check came from K so I mailed it back with a note thanking her for the help and apologizing if there is any misunderstanding or she felt coerced into sending money because I told her what grandma said about her which I acknowledge was not the proper thing to do given that she had just died. I also apologized if she felt I was “extorting” money out of her. I was hoping the quotes around extorting made it clear that I was referring to what I assumed were conversations between her and Cox.
At this point, mom is really bad and can’t take me to the bathroom or get me up and I sleep with this really old cell phone in case of emergencies but I’ve gotten so weak that I can’t push the buttons so I was stranded in bed the whole day but luckily May stopped by that night because she was coming over to do something.
So now I’m completely back to where I was before she started working here and although I can now hire someone from the state to come to my house it’s going to take a couple weeks and there’s a very good likelihood that I will never get reimbursed for anything because she refuses to send in the timecards. Things aren’t so bad as before because coincidentally last week I finally got approved for Meals on Wheels but those are TV dinners which neither my mom nor I can even warm-up. And I finally got approved for using handicap transit. Public buses aren’t accessible but if you can verify that you are disabled which I could (but it took weeks of suspicion so I can’t imagine what it’s like for people who aren’t so extremely gimpy) which means I can finally go to a doctor. Maybe a dentist so I can get some front teeth. Certainly my GP who I have to somehow get to this week or he’s not going to fill my medication anymore and if I go even a day off my medication I can have a heart attack and die. I had planned on the caretaker being here because someone needs to stay with mom and I need someone to go with me but I wasn’t completely concerned because I was sure I could find even one person who could free up the morning but now I need two people and May is working, her mom is taking care of the grandchildren, and my auntie will be taking some of her grandchildren to school out of town.
We are trying so hard to find a place for mom but no one is taking new residents. We have a little help now because since my dad was in Vietnam the Veterans Association might pay for her to go to a private home. I really need someone to live here but I definitely wouldn’t put anyone through that until she is gone. Even so, that doesn’t seem likely. I’m only asking that they pay for their own food and utilities and their chores. No one likes the offer.
May explained that it was because no matter what a person would still be signing on to a life that included disability and for obvious reasons no one wants anything to do with that.
I know I’m just going to have to find someone on Craigslist or something which is perfectly normal and I shouldn’t be scared but I’m absolutely terrified. I’m an only child and all my life I either only lived with my father or my mother so this is going to be really foreign to me. I’m also just scared, I only know relationships where you bide your time until you get so hurt you have to break ties and I’m not sure what sort of hurt I should expect with a complete stranger I’m living with; it could very well be a type of hurt that I haven’t experienced before and have no coping mechanisms for.
I think I kind of just snapped this weekend. I don’t want to sugarcoat things for anyone anymore and even though every time I’ve asked someone for help who has insisted that they would be there if I ever needed anything they immediately peace out. I’m just gonna take every offer given, I give up all pride or shame. I lost contact with a lot of friends like you because I don’t want to be a burden, I wanted to fix things and hit everyone back up when things back to normal but I know that’s not possible.
That first caretaker finally turned in all the paperwork she needed to and then was going to be paid by IHSS after receiving her timecard. I knew the check would probably be late and that this woman didn’t have a lot of money either so I paid her with my credit card for that week and then the next she texted me asking me to send her money.
What I didn’t tell my friend was that when the caretaker didn’t arrive it was at the worst possible time. May was out of town, auntie L was out of state, mom couldn’t even use the phone anymore, and I’m not strong enough to work the buttons on my cell phone so I spent the day in bed unable to move or go to the bathroom but luckily May came home early and checked in on me.
The thing about the money gets even more complicated. The reimbursement won’t be sent out for what I paid the caretaker until the time sheets are signed by either me or my auntie but regardless of what happens the reimbursement will be sent to the caretaker. The one who abandoned me and has been dodging us. Do you think she will come over and give me those thousands of dollars I gave her? It doesn’t seem likely so I haven’t done anything but now it looks like the reimbursement might go through without my signature so she might be getting the money anyway.
Thank God a couple weeks after that IHSS finally came through with a new caretaker. She is loud as a motherfucker, manic as hell, and tries to multitask too much. Mom hates her. Every day they scream at each other. Mom sincerely and the caretaker in a kind of condescending joking manner.
She may be condescending, but she doesn’t belittle mom and she actually has experience with dementia. She is an amazing cook, this is the first time I’ve ever had a home-cooked meal that wasn’t like hot dogs at May’s parent’s place. She has torn the house apart deep cleaning everything because even though the place is tidy it’s dirty and it was beginning to smell. She cares about the well-being of mom even when mom is at her worst and has used her personal time to contact different government agencies to try to get more of our paperwork in order.
We still have no one to work nights which is why I’m here now. I usually don’t go to bed till around three but the last couple days it was like 7 o’clock in the morning when I went to bed. All the screaming kept me from sleeping in too late, though.
Oh, and look what the first caretaker sent me recently
I literally have said nothing to her since my text back to her that I wasn’t paying her. I’m still not going to answer, let IHSS work it out.
She is upset because IHSS knows what she did and now they obviously won’t hire her. And the rest of this is kind of sad… The holiday food? Apparently her daughter had told her she was a narcissist and stood her up for Christmas so I invited her over even though I really didn’t plan on celebrating it (not in a bitter way, but a “not having Christmas is my Christmas gift” way) and she did bring something she had already cooked but everything else was provided by my mom’s church or me.
She told me that I needed new bed sheets so the next day she came in with sheets she said she got at Goodwill for $1. In return, she borrowed three of my shirts and obviously hasn’t returned them. It seems there are a few other things missing but that could just be mom throwing things out when no one’s looking.
She came in one night to help me into bed, I guess that’s what she’s referring to with the emergency help thing. She also came in at least an hour late every day and left at least a half-hour late every day.
She did bring in a few cartons of milk over that I’m surprised she didn’t mention but I guess she wasn’t going to try that seeing as how every day she ate two meals and snacks throughout the day all week long on my dime.
I’m really not even mad, I’m just exasperated.
This woman is self-destructing and the countdown seems to be going faster the more I ignore her messages. I just pity her, she keeps digging herself holes when she totally didn’t have to. If she had responded to me that night and said that she needed the money then I would have sent it to her, I would have borrowed it from May and sent it to her right then. Even after she left I left it up to IHSS and she was so suspicious of what I might do (maybe someone informed her how serious charges could be filed against her) that she would call and say things that would of course not get verified by me or any documentation and now she’s under all the scrutiny.