We're Drowning.

A Wordy Life Update (Non Music)

I was sitting in the car with Vale, outside of the hospital while Nikki went in for radiation two Fridays ago (last Friday? Fuck, it’s Monday. Two Fridays ago, then) listening to the same two songs on Spotify for her amusement (which is the only reason I even use the app anymore, and most of the shit for kids on their is poison, which I’ll eventually write about) when a nurse came up to the window. I thought it was because I was parked in the oncology but it was late in the day on a Friday and there were plenty of spots. I rolled down the window and she told me Nikki had fallen and they were taking her to the ER for scans. Nikki has cancer in her bones, so this already was a shit situation.

We waited a few hours in the car, because Vale is both autistic and 5, which is not the sort of calming presence they need in the ER, though she’s pretty well behaved outside of the house. Maybe I’m not the calming presence. Eventually she tried to call, but the reception was dogshit. What I got out of it was she broke her hip and they were keeping her overnight. Over the next 48 hours we texted when she was awake and I learned they were doing a hip replacement, a major surgery for healthy people, so for her this was going to be even more difficult.

She would end up staying at the hospital almost a week, which was my first time fully running the house with the kid. The first two or three days was pretty bad. Since she was an infant, Vale has struggled with sleep. She would wake constantly, which I think got worse when the ceiling in our apartment bathroom (and part of her room) collapsed and our landlord took months (and a lawsuit) in fix it. We couldn’t fit her crib anywhere else, so she would end up sleeping in our bed and this wasn’t the cozy fix it sounds like. Eventually, we moved into our house (which shortly started having problems all to itself, including a drunk woman who ran into our driveway wall which is estimated at $5k to fix but the police, being awesome, never gave me her information to send to insurance) and she would still wake up frequently, to the point where I would have to hold her in a cheap rocking chair all night for her to sleep. We got her a toddler bed, in hopes that this would somehow help, but she would wake up and walk out into the rest of the house, generally inconsolable. I talked to her pediatrician and they claimed it was just sleep regressions, the dreaded two words all parents despise, and maybe I could get her to a sleep therapist. Like all other therapists, the wait is massive and insurance? Might not take it. So, for the last few years I’ve had to sleep in that fucking rocking chair and if I leave it, even if she’s in bed snoring? Within five minutes she’s out, calling for me. I’m 47 with the back of a 74 year old.

So, recently Vale’s life has had a bunch of changes which even neurotypical adults would have difficulty navigating, and this has caused a new pattern: I can get her to sleep around 630-730 but she’ll wake up around 11 or midnight (with the last two days being at 10) and she won’t go back to sleep until 4 or 5. A fully awake child vs a barely alive old man fucking sucks. She’s in three different therapies (well 2, with the third still going through evaluations) and everyone has said the same thing: a shrug of the hands, albeit a professional shrug. So, I’m with Vale between 20 (on good days) and 23.5 hours a day.

Nikki came home Thursday. Before I picked her up I had to try to rearrange a few different rooms so she could have a quiet place to recover without a feral child and three cats who don’t understand personal space-all four of them not feeling the rule of “inside voice” applies to them. Since then she has been confined to bed (well, a converted couch that can be reconfigured) and has to rely on me for everything. If you’ve ever known me more than just tangentially you already know I am incapable of taking care of myself, so I’m fucking this up left and right despite my best intentions. She still has more radiation to go through and the chemo they initially were treating her with isn’t working, so they’re going to go with a more aggressive one starting…sometime? The joys of the American health system means that no one can communicate properly with anyone and the administrators generally have the empathy of a thrown brick, leaving Nikki -while both suffering from cancer and recovering from a hip replacement, to do all sorts of planning, communicating and coordinating-all jobs she isn’t paid for but others, somehow, are. I do my best to help with this since communicating is part of being a “writer”, which I guess I sort of am, but this is infuriating for her because she’s dealing with two children in the house (five if you count the cats) and an inept system that seems to, by design, exist to weaken the spirit until patients just give up. I know my shortcomings very well, I just don’t know what to do about them.

We’ll shift to my favorite topic, me, for a second. Last year I lost my job because I applied for a higher position and my boss told me she didn’t like that and then myseriously a few days later “cuts have to be made” which happened right after multiple emergencies in the house drained our savings entirely, with creditors starting lawsuits. Thanks to everyone’s generosity we were able to handle that but it took me a long time to find a new job, which paid substantially less than I was making. I had our mortgage put on forebearance but when that was over, the bank decided to take the money I was making and apply that to other debts than the mortgage. You can figure out what happens next.

I also had the brilliant idea that, since I had no insurance, to cut my SSRI. Big mistake. I’ve been out of migraine meds for months now because while I was working my insurance denied all of them. Without insurance the cost for these three yearly would be over $40k. My neurologist would not write a prior authorization because he needed an appointment, which with my insurance then would have cost over $350-$500 as well as having a fucking six month wait. American health system, again. I now have two or three migraines a week, some lasting only a few hours if I can get down enough ibuprofren (well over the safe limit) and days if not. These include vomiting, aura…the whole package, plus excruiating pain that has no relief. When these would happen before I was able to fuck off to a dark room for a bit, but when you’re responsible for five living beings? Couple that with withdrawal from Sertraline and, yeah, its been a blast. I was able to refill my SSRI but only thirty days because my doctor also wants a visit.

Since I was younger I’ve had difficulty with executive function, coupled with rejection sensitive dysphoria and diagnosed PTSD (as well as probably ADHD but my psych wouldn’t sign a referall for a diagnosis because she thought Wellbutrin could handle it. Fun fact: no) and all around avoidant personality disorder. These all mean I know what to do but cannot physically bring myself to do it. Phone calls, emails etc. These are all incredibly difficult tasks and cause a lot of what has fucked my life up over the years. My last therapist told me to “eat atomic fire ball candy” because that would make me uncomfortable and I could do difficult things because the discomfort from the candy would trick my brain.

Also: no.

Since February I’ve been out of work in order to take care of my family, but things keep piling up and getting worse. I launched our Gofundme in March and almost instantly after receiving payment our HVAC died and, if you’re keeping score, the parts for it were no longer being made. So that was about half of what we got. Now the bank wants the house which will take everything else and then some. The goal for fundraising was to have enough money to make it as long as we could without me working, now it’s basically gone and I have other creditors threatening action, including a summons for court in ten days on a credit card debt. I’ve been selling off chunks of my record collection as well as books, memorabilia, household items etc as fast as I can, as well as writing whenever possible but even that is a challenge because Vale doesn’t understand Daddy is working and needs something every few minutes. We don’t even need to go into the price of groceries because, no matter what your socio-economic status, everyone is feeling the pinch there, which means less sales across all industries. I’m now digging into selling the things I didn’t want to get rid of, that I’ll probably never be able to get back if the dust ever settles. Selling off pieces of your life, your history, in order to help your family and still not making ends meet is dehumanizing, especially when coupled with my poor mental health. By the time I’m able to respond to my family or friends messages I’m generally so burnt out and on edge waiting for Vale to wake up that I just sit and stare into nothing. Every day brings new difficulty (garbage disposal needs replacing now, house needs sealing from mice) new administrative bullshit trying to figure out appointments for everyone and, most importantly, trying (and failing) to be a source of support and comfort for my family. I just do not think I can do it.

One thing that doesn’t help is the vultures who constantly circle when someone is in need. For the last year and a half I’ve received no less than 5 calls a day (with the record approaching fifty) from scam loan companies and people offering to buy my house for less than half of what I still owe for it. It’s gotten to the point where if I hear voices or cars outside, or even a noise (no matter what time of day) my nervous system ignites. It’s going to take years of work to get my mental state somewhere approaching baseline “normal” which has always been a struggle for me since my mother died.

There are some silver linings, however, that keep me from finding a thick rope and sturdy beam: the radiation has been doing it’s job and is shrinking the tumors in Nikki’s bone and, with her hips being the worst of her pain, having one new one will hopefully help that-after weeks of pain I can’t imagine and upcoming physical therapy. Vale is thriving in her speech therapy. A year ago she could barely string together two words, now she never stops talking or singing. Her therapist tells me that she’s made unbelieable progress that kids twice her age don’t normally make. When she starts her ABA therapy it’ll be getting her out of the house several hours a day, which will be great for her development and mental health, and good for me because she is very sensitive to sound so things like vacuuming and cutting the grass will no longer be nuclear events. It will also give me quiet time to work on certifications that will (hopefully) help me find a better job when the time comes. Writing, when I can, has helped keep me grounded in some kind of reality that isn’t all suffering, though I can only do it in ten-fifteen minute spurts before I have a child crawling all over me.

The kid shows her mother’s resiliency and her parents shared interest in music and art. She’s going to be ok.

So, if you’re still reading (because this was long, sorry) we still need help. A lot of it. And I hate to conintually ask, but there’s nothing else I can do besides what I’m already doing. I’ve long given up the idea of having too much pride to ask and already my appreciation for what the community has come together to do, especially considering times right now are incredibly difficult for everyone I know. When I’m able I will do my best to repay such generosity in however I can.

Here’s how to donate:

Venmo: blackhouseindustries

eBay: noiseinfection (will have auctions up throughout the week)

dePop: noiseinfection

Paypal: noiseinfection

Everything helps. Even if it’s just sharing the fundraiser or this piece for visibility. The algorithim does it’s best to hide this sort of thing. Orders will go out a little slower than I’d like, but they will go out. My deepest thanks. Here’s a picture of a cat: