#postapril24

[missriyochuchi]

Mom and I have less than $200 between us and need a little more to keep us afloat with bills and medical supplies while we wait for Dad’s pension to start disbursing. Please help us keep our lights and heating on!

[missriyochuchi]

Since my first post lost momentum, I set up a GoFundMe. Mom and I now have less than $500 between us and are still waiting on a decision from our mortgage company about our application for hardship assistance. Neither of us are able to work right now, so we’re appealing to the same kindness and generosity y’all showed us in 2019 when my dad passed away and my mom became quadriplegic. Any little bit helps for bills, groceries, and medical supplies 🙏🏽 PayPal / Venmo

[missriyochuchi]

Last Wednesday, the town took down the tree in front of our house, and it was noisy and messy af (there’s still some sawdust on the road that didn’t wash away with the weekend rain), they took up the whole block for 4 hours in the morning, but I didn’t think much of it because they’d marked it with an X this past November after some guys climbed it, so I figured they were taking down a dying tree before it caused any damage (the bark on its trunk split at least a decade ago and branches would fall every other storm, it had to go), but then today, someone who I thought was a land surveyor looked at the road in front of our house and left two sets of parallel lines, which I thought looked weird when I took a closer look tonight until I realized they’re BLUE GUYS I THINK THE TOWN TOOK MY LONG ASS EMAIL FOR A HANDICAP PARKING SPOT SERIOUSLY 🙌🏽🙌🏽🙌🏽

[missriyochuchi]

Am I crazy for getting ABSOLUTELY FUCKING FURIOUS that our neighbors keep parking in front of our house and forcing the accessible buses to double park and block the road? My mom keeps telling me to calm down and that I can’t control it, but I also can’t control the large fucking puddles at the end of our driveway that are too wide and deep for her wheelchair to cross, and she shouldn’t have to create and navigate dangerous road conditions just because our neighbors couldn’t be bothered to park anywhere fucking else in the world like THIS IS A DISABILITY RIGHTS ISSUE SHE SHOULD HAVE UNIMPEDED ACCESS TO HER OWN FUCKING HOUSE WTF 😤

[missriyochuchi]

When it rains, it pours: Mom’s wheelchair battery can’t keep a charge, she has a doctor’s appointment on Tuesday, and I can’t reach the distributor for a repair 😭 I had to leave a message, and they don’t open until 8am Monday, so it’s not likely this’ll be fixed in time to renew her prescriptions before she runs out 😭😭 I just hope her doc understands and lets her do telehealth; if not for the bloodwork, I’d have insisted on it earlier.

[missriyochuchi]

Ableism isn’t just using designated handicapped spaces while able-bodied, it’s ignoring disabled people’s requests for space and assuming that if it’s not a problem now for an able-bodied person, then it won’t be a problem later for a disabled person. If a disabled person speaks up to ask for accommodations that aren’t immediately available, it’s because they absolutely fucking need it now and in the future! Ableism is assuming that providing space only when it’s immediately needed is fair and not alienating and derogatory and dismissive. Disability justice requires equity, not equality, at all times, not just when it’s convenient for able-bodied people.

[missriyochuchi]

One of the first pieces of advice I got from a nurse, when Mom was still in rehab and I was learning how to take care of her, was “Don’t make your life all about this.” Don’t spend all your hours taking care of your mom, don’t forget to go out and have a life outside of this.

At the time, I thought, “Easy for you to say, you think I’ve got help at home, but I don’t, so I have no choice but to spend every waking hour taking care of Mom. She needs it. And I’m a fairly obsessive person, the focus won’t hurt me, I’m sure I’ll be fine.” And I was okay or at least functional for the first year or two when I was still finding my feet and the world was united through COVID.

It’s been five years. I wish I had taken her advice more to heart. Now I can’t carve out time for myself without feeling guilty or cutting into my sleep. And it’s starting to affect my health, or at least enough that I can no longer ignore my constant tiredness and anxiety and lingering irritability. Most days, I can put on a smile and laugh and be in the moment, but sometimes, more times than may seem acceptable, I really need some fucking help.

[missriyochuchi]

Learning to channel my anger at my ableist neighbors, trying not to let my fury eat me alive and remembering that if they’re still parked too close to our driveway and blocking the accessible buses, I can absolutely justifiably go apeshit on their asses 😌 literally point to the vehicles and the problem and cuss them tf out 😚

[missriyochuchi]

Guess who’s back in the hospital with her Mama 🙋🏻‍♀️🤦🏻‍♀️

[missriyochuchi]

Mama’s urologist was totally checking me out while trying to be professional 🤭 dripping in Gucci and taking longer to explain things and get out 😉

Anyway, I feel really bad for Mama’s roommate, not just because she’s in a lot of pain but because Mama is by the window and she’s really popular lol Wound care team, hospitalist, dietician, cardiologists, a lady who deals with discharge, urologist, even her PCP dropped by because she works at the hospital outside her private practice 😅 they all have to pass by the poor girl who doesn’t get seen much ☹️ I’ll say this about my parents (Dad was similar but in his own quiet way): they know how to talk to people and charm them for their advantage. Wish I could say the same for myself lol but I’m learning.

Temp and blood work are back to normal. I think they’re keeping her for her heart (cardiologists want to do an echo) and her butt (the wound care team is worried she’s developing new pressure ulcers). They’re aiming to discharge tomorrow or Friday 🤞🏽🤞🏽

[missriyochuchi]

Neighbor parked across from our ramp this morning. I put my coat on and waited by our door for as long as I could before Mama needed me. Luckily, I caught the driver come back during some down time, so I put my coat back on and walked out to talk to them. We made eye contact, we waved at each other, I started making the roll-down-your-window motion, and she rolled her eyes and drove off 👁️👄👁️

The notes weren’t cutting it for this neighbor in particular; they wrote us back to reject our request, in true condescending asshole fashion. I really thought if we could talk in person like civilized people, we could at least come to an understanding. No go 🤦🏻‍♀️ Was it my mask? Was she avoiding me? Either way, what a fucking asshole! Wtf is it gonna take!!! 😡😡😡

I got no email back from the disability office, but a town truck did drop by on Tuesday. They looked at our driveway and the curb next to it and even knocked on our door, but my hands were busy with Mom and I couldn’t get my mask on fast enough before they left. I really hope they come back or I get an email update because I am well and truly fed the fuck up with our neighbors. I tried being nice, I tried not to get in their way, but now I’m ready to be fucking annoying 😈

[missriyochuchi]

Mom finally got a room a little after 12 when they delivered her lunch. It was a bit of a show because she’d been waiting for over 12 hours and had ended up squished/buried between newer patients with bigger and louder entourages lol A whole lotta movement for a little old lady… whom the nurses didn’t even know was quadriplegic 🤦🏻‍♀️

After settling her down, I took an Uber home to clean house; take in all the deliveries that I, of course, had scheduled specifically for today; shower and eat for the first time in over two days ☠️ I am also in desperate need of sleep.

Some nurses are masked, but the ones that are aren’t really into it. Baggy, under the chin, not a respirator in sight. However, I do appreciate Mama’s nurse who doubles up his surgical masks; I see you and love you 😚😷

Mama’s other day nurse talked the charge nurse into letting me stay overnight (“she’s nice, she helps, she won’t get in the way” 😇🥰), so I’m nestled in a recliner trying not to wake Mama’s roommate. Idk if the other nurses got the memo, though, because they all keep eyeing me suspiciously lol Wtf am I gonna do, empty everyone’s foley bags without their knowing 😱😆 which btw is a no-no, don’t do that, even if you’re trying to be helpful, because they’re supposed to measure and record that lol

[missriyochuchi]

Guy next to Mom in ER is saying that his chest “is on fire” and that he has chills and a stomachache 💀 and they just took a chest X-ray with absolutely no fucking mention of COVID ITS THE CLASSIC SYMPTOMS OMG

[missriyochuchi]

It was a matter of time before one of our neighbors pushed back. On the left is the note I leave on cars parked next to our driveway, and on the right is a note written on the back of one of my notes and left in our mailbox today.

I’m literally sick to my stomach. I absolutely do not like the idea of being on bad terms with any of our neighbors when we are so outnumbered (us 2 Asian ladies against 4 offending households) and vulnerable (1 of us is disabled). This neighbor in particular scares me the most because I’ve seen their preteen daughter in a thin blue line sweater 😱🤮 and so can only assume that they lean right wing and are not friendly to brown and/or disabled people (which I know is a problematic assumption but it is a red county). Not to mention their note mirrors mine not just in structure - they signed with their address like I did - but tone, a little anger under the surface. They left their number but not their names.

Mom is ready to throw hands 💀 I passed anger quickly and am now stewing in the deep end of fear and anxiety. The safest route is to ignore the note; assume ignorance, not malice; and stop putting notes on cars lol I started doing it for a few reasons: (1) Idk how long cars parked next to our driveway will be there, and Mom’s schedule changes constantly; (2) I can’t assume cars parked next to our driveway are even from our block (I had to knock on every door once and it was not pretty); and (3) I can’t wait around to talk to each offending driver in person when it happens at all hours of the day, especially at night. I get it, it’s a public road where anyone can legally park anywhere, but that’s exactly why I ask(ed)! The best I could get out of our town’s traffic safety committee was the yellow handicap signs at both ends of our block, but it’s not sufficient.

Was I out of line? Am I wrong to ask for space just in case? Never mind the giant puddle that forms at the end of our driveway whenever it rains and that’s too wide and deep for Mom’s wheelchair to cross. Even on dry days, a double parked bus will, has, and does block traffic. Is it wrong to try to avoid that scenario? We could call them, explain that “as long as no one blocks (y)our driveway” is not sufficient when one is in a wheelchair and will always need to access a ramp to travel, but we’ve clearly passed the preventative stage and seem to be welcome only when the problem is already happening. Maybe I should re-up the blue handicap sign discussion with the traffic safety committee. What’s the path of least violence?

[missriyochuchi]

Mom thinks we’re “making enemies” because I keep putting notes on cars parked next to our driveway asking them not to park there so she can access her buses without blocking traffic.

Sorry not sorry, but if asking for accommodations pisses off our neighbors, then they’re bad fucking neighbors. It is not unreasonable to ensure space for a disabled person to leave their fucking house in the only mode of transportation capable of handling their wheelchair.

Maybe I’m not handling it right, maybe I should be speaking to each driver in person. But not at fucking midnight! I can’t assume whoever parks in front of our house at night will know to leave before sunrise; I can’t possibly know how long they’ll be there, especially since it’s none of my fucking business. I have to assume their ignorance and prepare accordingly without waiting for them like a stalker.

One of my neighbors had the gall to give us their number and tell us to call if they need to move their car, and I’ve been livid about it since. There are no time limits to handicapped parking spots - why should there be for our house? Just because we couldn’t secure a blue handicap parking sign doesn’t mean we don’t need the space; the 10-foot metal ramp in front of our house is a clear sign that a disabled person lives here. Why should my mother need permission to leave her house? Why should she divulge her contact information and no one else on the block? It’s grossly patronizing.

Mom needs to stop thinking of herself as an inconvenience and that any help offered should be paid back. What’s gratitude to a disabled person with no other options? Accommodations aren’t helpful conveniences - they’re rights to be demanded and wrested out of the ignorance of an able-bodied world.

[missriyochuchi]

One of our neighbors parked a gigantic fucking truck in front of our house and a little too close to our driveway at 11 fucking 30 at night, so ofc I'm up way past my bedtime, sick to my stomach and anxious that the bus picking up Mom in a few fucking hours won't have room to pull up and drop the ramp close enough without double parking and blocking our small street I HATE OUR FUCKING NEIGHBORS SO MUCH

I know for a goddamn fact that every single neighbor on our block has seen my mother in her wheelchair and the bus she uses to get around. I've left countless notes on countless cars that went to every single house on our block about leaving space for us. AND STILL!?!?! It doesn't matter if they leave before we do - SHE DOESN'T STOP BEING DISABLED WHEN WE'RE ASLEEP.

I'm listening to a podcast to calm down, but I can't help going through every single possible iteration of the conversation I'll have to have if/when they don't move before our appointment window. Mom said she'll take care of it, and so far, people have been polite to her face, but I know I have to be prepared for the worst-case scenario, which I always assume is the one that will play out. I mean, if they're inconsiderate enough to pull this shit after 3 fucking years, why should I give them the benefit of the doubt? They're dicks, so I must prepare accordingly, which is keeping me up and upset and UGHHHHHH

Sometimes I hate being a caregiver.