Don’t forget we moved!
https://brandmu.day/
Real Life Struggles/Support/Vent
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@Solstice - I’m putting this under a spoiler tag, because I hope maybe talking through similar things will provide some assurance and support. But. I also don’t want to trigger those fears further, or make things worse. So. If you don’t want to read it, PLEASE don’t. Either way. I’m so sorry you experienced that. I’m glad you came out ok on the other side. And I hope your mind gets gentler and kinder about how stressful drastic illnesses can be - even after they’ve physically healed.
Commentary re: unpromised time and having to come to terms with the impossible beneath the tag.
I don’t know if I should write this or not. But I’m going to, in hopes that maybe it will help ease some of your burden. If it makes things worse, I’m really, really sorry.I disappeared from the internet earlier this year as summer faded into fall. I got devastating medical news. It’s going to lead to an absolute horror-show ending that I am to my core terrified of experiencing and have NO IDEA what to do long-term about figuring out how to maybe cope with it.
If I’m lucky, I’ll have time to maybe make coping progress. If I’m not… Well. I won’t have to cope after, either way.
But the part that actually seems impossible… I know the whats. They are indisputable and not changeable at all. But. NO ONE knows the whens. Tomorrow? Next week? A random Tuesday a year and a half from now? A couple decades? There is zero timeline predictability from ANY of the specialists, despite the definite knowledge of how it ends.
I spent a few months honestly just crying for a lot of it, and telling people how much I loved them in between. I spent a lot of time broken-hearted at all the things I might end up missing out on doing before it comes. I grieved the loss that hasn’t come yet, but that will.
But the longer I grieved and the more I waited… The less patience I had for it. Some of the bucket list won’t ever happen, because my body isn’t capable. But. There are still plenty of things that I still may well have time to surprise myself with.
I baked and cooked for those I love, their favorites, even if I couldn’t eat with them. The joy as they ate was more than enough. I went on long drives with loud music and windows down and good coffee talking about everything and nothing with my spouse. I watched bad movies with my partner. I spent as much time telling my bestie how perfect she is as I could. I veg’ed with friends and gave my mom extra hugs. I still cried a lot. I will probably still cry a lot always - even if it does end up being decades.
I read books that have been on my to-read list for ages. I read old favorites from when I was super young. I bought tickets to every play and musical that came through our town, even if I did have to miss about a third of them because day of my body couldn’t. But I also saw a University production of my all time favorite musical that I thought legit did it better than when I saw it on Broadway.
And each day where the awful didn’t come… Each day made me just a little braver in regards to my capacity to deal with the bad one, when it gets here. And eventually, coping skills and therapy made progress. I /probably/ know how. I’ll never know when until it’s done. But like. The SCARY part of that is true for everyone. None of us know when.
And fuck. Maybe even I don’t know the how. Maybe a plane falls out of the sky on top of me, or I’m bitten trying to pet a rabid raccoon, or I get a Covid or flu or strep or other infection my compromised immune system can’t handle and the end comes without reaching the certain moment of awful after all.
When it comes down to it… Every single minute is an un-promised gift. Try to enjoy as many of them as you can. Give yourself compassion and grace on the ones that are harder or scarier. Tell the folks you love how much you love them. Pet any fuzzy thing that crosses your path. Spend more on dinner than you can maybe afford that week, and make up for that favorite special meal with a few weeks of instant ramen to fund it.
And just be as kind to yourself as you can manage. Because death is really scary. And there are no promises. But. Right now? In this moment, we’re all here, and trying, and doing our best. And that’s just as beautiful as it is terrifying.
I’m not going to posit any of what may or may not come next. I don’t know for sure what I think about that even for myself, much less for what it could be with anyone else. But. I believe in every fiber that makes me that love is forever, and that spark will get passed on long after those who love me are gone, because it will show in how they love others, and how those others love others, and on and on and on.
And when I forget how to grieve and mourn with joy and gratitude, and need a cathartic sob before carrying on… Andrea Gibson’s poetry has been unspeakably useful - to me. Her book ‘You Better Be Lightning’ is both heartbreaking and heartbuilding in all of the best and worst ways possible.
I’m rooting for you over here. I’m rooting for us all.
We're all mad here.
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@Jenn Quite the opposite of making it worse - this resonated really well with the sort of feelings I’ve been having, and I’m not even going to pretend that you didn’t make me have a good, productive cry.
Thanks so much for sharing your experience. You laid it all out so beautifully.
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@Solstice I’m really, really sorry that it resonates. But I’m really grateful it could help.
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2023 is going out with a literal bang for our family:
Spoilers for gun violence content.
(All immediate family is ok, but uncle in law is not.)Mother in laws little brother got shot in the chest and is still in critical condition, can’t breathe on his own.And while she was up at the hospital she got a call that she’s got some sort of skin cancer they need her to have surgery to remove.
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@Cobalt Jesus. All the best to your family. I wish I could think of something more useful to say.
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Oh my God my aunt is insane. I just need her to calm the fuck down.
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As a teacher it is physically impossible to make sure everyone has their coat and water bottles.
- There are 24+ of them and 1 of me.
- Not all of them CAME with coats. For some kids they refuse to wear a coat and only come with a hoodie (or two). Keeping track of which kids have coats and which have just not gonna happen.
- Same for water bottles. Some kids bring two. Some bring none. Often two of them look exactly the same!
- Your kid DOES go to other classes during the day. This room is not the only one which means there are MULTIPLE places the coat and/or water bottle can be.
- Don’t get me started on hats and gloves.
To the adult that ranted at us to be “adults” and “take care of it” because her grandson can’t remember where he left his coat? Yeah. No. That isn’t on us, sorry.
This class especially because they are a sad train wreck that gets physically violent with one another any time the teacher turns her back.
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@junipersky Don’t you know you’re required to stop each student as they enter the class, take a complete written inventory of their personal possessions, and then stop each student as they leave the class while ticking off each item on the inventory? How can you expect a student to do a thing like “remember to wear a coat home in winter,” you heartless monster?
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I’m collecting phobias like they’re pokémon, and I would like to fucking release a few into the wild, thanks.
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Randomly this made me remember:
The Jedi Survivor PS5 game has an arachnophobia mode that will make all the spiders not spiders.
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@junipersky said in Real Life Struggles/Support/Vent:
The Jedi Survivor PS5 game has an arachnophobia mode that will make all the spiders not spiders.
Grounded has that too, which I appreciate. (Though they’re still all named spiders so it’s of middling benefit.)
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Just pretend they’re all Spider Robinson clones.
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Came home, water dripping from what we have since is learned is called a scuttlehole.
Hoping it is a roof leak because the HOA is in charge of paying that. If it is a pipe we are fucked. X.x
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I’m too young to get disability according to my doctor, but too broken to work according to my employer so fuck me I guess.
Cobalt@Under the Stars
cob.alt@Discord
Cobalt#[email protected] -
@Cobalt Do you have resources to access a different doctor? It’s hard as hell in the US if you’re under 55. It took 4 years and two attorneys, but I qualified at thirty. If there’s anything I can do to help or support you while you try to navigate a walking talking nightmare designed to make everyone fail, I’ll do my best. I’m so, so sorry you’re stuck in that loop. It’s awful.
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Disability is hard in the US to get. A lot of people get denied and then have to get a disability lawyer. You can sometimes get help at legal aid. Sometimes.
I’m more curious - how does your work determine you are too broken? They can’t/don’t want to make accommodations?
Mind you, this is all your private information so you don’t have to share, I’m just curious.
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@Cobalt said in Real Life Struggles/Support/Vent:
I’m too young to get disability according to my doctor
I don’t know your specific situation, but this smells fishy. Even children can receive disability benefits in certain situations, and anyone over 18 can qualify (though as others have said, it is tougher when you’re younger). If a lawyer is not an option, there are disability advocacy organizations that can offer advice/support. Good luck!
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@Jenn you’re a doll. Right now I’m in the first stages of applying, so I’ll reach out.
@RightMeow My job wouldn’t give me disability accommodations until after I passed a mandatory 5-week training, despite passing twice the necessary testing with flying colors (like top 1% scores) and having 100% metrics in customer service. And cut me because the first time through training a medical procedure (nerve block on my spine) had me in agony for a week, and then the second time I got bronchitis but that’s “temporary” so they won’t cover that time. I can’t go back to my usual fall back of pizza delivery because I can’t stand, walk, bend, or lift enough to be able to function and do the job. But I also can’t find a work at home or desk job that will accommodate the autoimmune arthritis and degenerative disc on my back flare ups.
@Faraday My rheumatologist told me I was “too young” and basically accused me of trying to get onto disability so I could use it as early retirement. That she saw people who were supposed to be housebound but would be out going on vacations and stuff.
This was said directly in front of my mother in law who was furious about it.
Cobalt@Under the Stars
cob.alt@Discord
Cobalt#[email protected]
