Just sharing a peeve
Jan. 19th, 2025 09:33 amOkay, time to share one of my personal peeves in fictional media, specifically in the realm of media that has actors doing things.
And, before I say it, I want to be clear that I understand BOTH the Watsonian AND Doylist reasons for this peeve of mine consistently and continuously occurring. I know why it happens! Still bothers me!!
Do these motherfuckers understand how much small injuries affect human performance?????
Small cuts and scrapes hurt! Moreover, they impede use of limbs and such because the human body will automatically flinch back from pain! With enough pain, muscles spasm open, joints fail and collapse! Like, yeah, you absolutely COULD hold that sword, but your hand it going to flex and twitch on the hilt, loosening your grip! I mean, try walking on a stab would to the bottom of your foot! Caltrops were invented for REASONS. Have you, dear reader, ever got a piece of glass stuck in your foot? And tried to run on it? Half the time your knee buckles under you!
And yes, please, I *know* the explanations and reasons. Protagonist powers, activate! It still irritates the ever-loving snot out of me. As a person with chronic pain who moves through the world in varying degrees of pain, I am intimately aware that the human body, despite all effort of will to ignore pain and set it aside, the human body will in fact go on strike if it is in enough pain.
NB: Horror media usually gets this correct, up until the protagonist/final-girl.
And, before I say it, I want to be clear that I understand BOTH the Watsonian AND Doylist reasons for this peeve of mine consistently and continuously occurring. I know why it happens! Still bothers me!!
Do these motherfuckers understand how much small injuries affect human performance?????
Small cuts and scrapes hurt! Moreover, they impede use of limbs and such because the human body will automatically flinch back from pain! With enough pain, muscles spasm open, joints fail and collapse! Like, yeah, you absolutely COULD hold that sword, but your hand it going to flex and twitch on the hilt, loosening your grip! I mean, try walking on a stab would to the bottom of your foot! Caltrops were invented for REASONS. Have you, dear reader, ever got a piece of glass stuck in your foot? And tried to run on it? Half the time your knee buckles under you!
And yes, please, I *know* the explanations and reasons. Protagonist powers, activate! It still irritates the ever-loving snot out of me. As a person with chronic pain who moves through the world in varying degrees of pain, I am intimately aware that the human body, despite all effort of will to ignore pain and set it aside, the human body will in fact go on strike if it is in enough pain.
NB: Horror media usually gets this correct, up until the protagonist/final-girl.
Affirmations, please
Jan. 15th, 2025 02:22 pmI would like affirmations, please.
I made an individual therapy appointment a few weeks ago, I just went to it, and I talked about the parts of the Unmasking Workbook for Autistic Adults that have made me cry.
Up to page 27, because that's as far as I've gotten. Because I keep stopping to cry.
I was very brave, please tell me I did good.
I made an individual therapy appointment a few weeks ago, I just went to it, and I talked about the parts of the Unmasking Workbook for Autistic Adults that have made me cry.
Up to page 27, because that's as far as I've gotten. Because I keep stopping to cry.
I was very brave, please tell me I did good.
CW: Gaiman
Jan. 14th, 2025 10:22 amI have been in fandom in the Twin Cities since the 90s. One of my dear friends was a friend of his. He was at all the local conventions. I've been to his house. I've been to his Guy Fawkes' party.
We didn't know. Not this.
We absolutely knew he was a wee bit of a slut, we knew he slept around, we ABSOLUTELY knew folks who desperately wanted to sleep with him! It all looked consensual! If grown-ass adults want to fuck him and he wants to fuck, it's all good!
None of us knew this. We didn't know.
He was kind and considerate and funny and brilliant, and he curated dozens of well-respected men and women who VOUCHED for him. How the hell do you think I got a tour of his study? It wasn't on my own damn merits, I assure you.
If Mike Ford were still alive he would be so, so, SO very furious right now. Incandescent.
We were all of us, betrayed.
We didn't know. Not this.
We absolutely knew he was a wee bit of a slut, we knew he slept around, we ABSOLUTELY knew folks who desperately wanted to sleep with him! It all looked consensual! If grown-ass adults want to fuck him and he wants to fuck, it's all good!
None of us knew this. We didn't know.
He was kind and considerate and funny and brilliant, and he curated dozens of well-respected men and women who VOUCHED for him. How the hell do you think I got a tour of his study? It wasn't on my own damn merits, I assure you.
If Mike Ford were still alive he would be so, so, SO very furious right now. Incandescent.
We were all of us, betrayed.
This has not been the worst year of my life. I'm pretty sure that was 2021, tbh. 2021, then this year, then 2022, 2020, 2023, 2016 ... I lose track after that.
My health is improving! Or at least headed towards a stalemate. I am now on two immunosuppressants, methotrexate and embrel. The embrel is of the new class, the biologics, it is a TNF inhibitor, and I have no fucking idea what any of that actually means! Or how it works! But it does work. One month after I started the embrel my throat stopped growing shut.
Okay, it didn't completely stop! But I had a balloon dilation in April and the next one in December, and that is miraculous. Recall, if you will, that I was requiring throat dilation surgery every six weeks for all of 2022 just to remain alive.
Six weeks to six months. Embrel is a literal, no hyperbole, life-saver.
My spouse's health continues to be a living nightmare. It's hers to tell, not mine, but it is an unending stream of pain, anxiety, logistical complexity, financial uncertainty, emotional fragility, and no-holds-barred disability that is untreated and unrecognized by insurance or the state.
She has a back injury. Yep. The most common complaint for disability and the most universally denied.
The longest night; I write this on the shortest day of the longest night.
My kids are both 21 year old, at least until Oldest's birthday in a few months. They are young adults, with all the uncertainty, drama, heartbreak, hope, failure, and searching for meaning that that entails. I love them both more than I love anything or anyone. My more reasonable, rational, adult self freely declaims that they are why I continue to strive for a better world. My atavistic antisocial self would commit any number and manner of crimes to protect those two humans.
I began this year embarking on a project of knowing myself. A life of autistic masking really did a number on my self-knowledge and I wanted to rectify that. What I have found is a lifetime of unacknowledged and unaddressed pain, grief, hurt, rage, anger, loss, and shame. I regularly, regularly, bitterly castigate myself for opening the feelings oubliette in the first fucking place - it's an oubliette for a REASON. But I've opened it, and after a year of growth and discovery I am grimly acknowledging that perhaps I might need to talk to a therapist about the possibility of a wee touch of C-PTSD. (PTSD and C-PTSD occur in autistic and ADHD folks at rates comparable to folks serving in active combat.)
I failed at a lot in 2024. I started out volunteering for Wiscon, something I always planned to do after retirement. I had to withdraw. I have experienced autistic meltdowns for the first time since high school. I didn't enter anything in the MN State Fair. My spouse and I briefly separated (I spent three days in a shitty AirBnB) over a conflict that was entirely my fault and had been my fault for the past five years. (We managed to salvage our marriage and are still together, as the previous paragraphs in this fucked-up Holiday Letter already show.) I didn't sign up for Yuletide. I stopped Duolingo after a 1500-day streak. I have 10 days before I've defaulted on my FTH fic exchange. After a year of trying to know more about myself, I still can't tell you what I want or who I am.
The job of repair is to make strength out of the broken places.
My personal solstice tradition is to read John M. Ford's poem, "Winter Solstice, Camelot Station." Every year I find some new meaning in it, which I think is a pretty dang good indication of a good poem! This year my mind is drawn to the Orkney boys, striving with all their might to meet some intangible goal of success, of approval, trying to reach a line beyond which they know they have done well.
That has been me, my whole life. Trying to unlock the secret code for being a person, the code that would let me be successful at humaning.
There is no secret code.
I am a human. Not a bad one, or an incompetent one. I'm a human.
And so are you.
Be at peace with that, this brief day and longest night. Be at peace with your mammalian self. Hold fast in your shelter, bring your loved ones near to you, light candles and fires, drink and eat and sing against the dark.
The light always returns.
My health is improving! Or at least headed towards a stalemate. I am now on two immunosuppressants, methotrexate and embrel. The embrel is of the new class, the biologics, it is a TNF inhibitor, and I have no fucking idea what any of that actually means! Or how it works! But it does work. One month after I started the embrel my throat stopped growing shut.
Okay, it didn't completely stop! But I had a balloon dilation in April and the next one in December, and that is miraculous. Recall, if you will, that I was requiring throat dilation surgery every six weeks for all of 2022 just to remain alive.
Six weeks to six months. Embrel is a literal, no hyperbole, life-saver.
My spouse's health continues to be a living nightmare. It's hers to tell, not mine, but it is an unending stream of pain, anxiety, logistical complexity, financial uncertainty, emotional fragility, and no-holds-barred disability that is untreated and unrecognized by insurance or the state.
She has a back injury. Yep. The most common complaint for disability and the most universally denied.
The longest night; I write this on the shortest day of the longest night.
My kids are both 21 year old, at least until Oldest's birthday in a few months. They are young adults, with all the uncertainty, drama, heartbreak, hope, failure, and searching for meaning that that entails. I love them both more than I love anything or anyone. My more reasonable, rational, adult self freely declaims that they are why I continue to strive for a better world. My atavistic antisocial self would commit any number and manner of crimes to protect those two humans.
I began this year embarking on a project of knowing myself. A life of autistic masking really did a number on my self-knowledge and I wanted to rectify that. What I have found is a lifetime of unacknowledged and unaddressed pain, grief, hurt, rage, anger, loss, and shame. I regularly, regularly, bitterly castigate myself for opening the feelings oubliette in the first fucking place - it's an oubliette for a REASON. But I've opened it, and after a year of growth and discovery I am grimly acknowledging that perhaps I might need to talk to a therapist about the possibility of a wee touch of C-PTSD. (PTSD and C-PTSD occur in autistic and ADHD folks at rates comparable to folks serving in active combat.)
I failed at a lot in 2024. I started out volunteering for Wiscon, something I always planned to do after retirement. I had to withdraw. I have experienced autistic meltdowns for the first time since high school. I didn't enter anything in the MN State Fair. My spouse and I briefly separated (I spent three days in a shitty AirBnB) over a conflict that was entirely my fault and had been my fault for the past five years. (We managed to salvage our marriage and are still together, as the previous paragraphs in this fucked-up Holiday Letter already show.) I didn't sign up for Yuletide. I stopped Duolingo after a 1500-day streak. I have 10 days before I've defaulted on my FTH fic exchange. After a year of trying to know more about myself, I still can't tell you what I want or who I am.
The job of repair is to make strength out of the broken places.
My personal solstice tradition is to read John M. Ford's poem, "Winter Solstice, Camelot Station." Every year I find some new meaning in it, which I think is a pretty dang good indication of a good poem! This year my mind is drawn to the Orkney boys, striving with all their might to meet some intangible goal of success, of approval, trying to reach a line beyond which they know they have done well.
That has been me, my whole life. Trying to unlock the secret code for being a person, the code that would let me be successful at humaning.
There is no secret code.
I am a human. Not a bad one, or an incompetent one. I'm a human.
And so are you.
Be at peace with that, this brief day and longest night. Be at peace with your mammalian self. Hold fast in your shelter, bring your loved ones near to you, light candles and fires, drink and eat and sing against the dark.
The light always returns.
I am in my 50s.
I do not have very strong feelings. I do not identify them well.
I do not identify strong negative emotions in other people well AT ALL. I mistake fear and sadness for anger pretty consistently.
Last night I had some sort of unpleasant emotion, very VERY strongly, enough that it shitsprayed all over my wife and adult son, and I don't know what it was.
My son, who is also autistic, patted my arm consolingly and told me I was "shmad." Sad/Hurt/Mad.
Shmad.
I was shmad.
I do not have very strong feelings. I do not identify them well.
I do not identify strong negative emotions in other people well AT ALL. I mistake fear and sadness for anger pretty consistently.
Last night I had some sort of unpleasant emotion, very VERY strongly, enough that it shitsprayed all over my wife and adult son, and I don't know what it was.
My son, who is also autistic, patted my arm consolingly and told me I was "shmad." Sad/Hurt/Mad.
Shmad.
I was shmad.
Let's go fuckers
Nov. 5th, 2024 12:46 pm“People speak of hope as if it is this delicate, ephemeral thing made of whispers and spider’s webs. It’s not. Hope has dirt on her face, blood on her knuckles, the grit of the cobblestones in her hair, and just spat out a tooth as she rises for another go.”
Matthew (![[profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
crowsfault) on Twitter, 2022
Matthew (
crowsfault) on Twitter, 2022I'm glad I am feeling better --
Oct. 25th, 2024 06:58 pmToday I:
Went to my first hand OT appointment. I really liked the therapist! She has EDS and has had THREE reconstructive surgeries on her joints because her connective tissue is dogshit, so she absolutely understood - for the first time I have ever experienced with ANY physical therapist!! - my concerns and problems with PT and OT in the past. I have a massage ball, some gentle exercises, and optimism about the future of this process.
Came home and immediately went mattress shopping. Affordable Mattress, on Rice St. in St. Paul, is exactly what it says on the tin. Affordable. Mattresses.
Purchased a mattress, box spring and cheap metal frame for eldest child, whose ex is keeping their bed, and arranged for it to be delivered on her move-in day. Purchased a mattress for younger child, who informed us that there was an actual spring sticking loose in his and he's been sleeping around it for a while now. Purchased a memory foam mattress for spouse and I. Arranged for delivery of the latter two mattresses to our house, today.
Delivery was, very clearly, CURBSIDE. And since this is Affordable Mattress and not fancy-ass mattress, there is no 'mattress disposal' in this situation.
Accepted delivery. Moved old king mattress to temporary location blocking entire front window. Spouse put an ad up on Craigslist. (If you are in the Twin Cities and want a used flippable king mattress, about four years old, LET ME KNOW.) Wrestled memory foam king mattress through our very small, crowded house to bedroom. (All on one floor, thank goodness.) Memory foam collapses and does not steer through hallways very well. Son cleared his old mattress out of his loft frame and hauled his twin mattress down. I help very mildly in the making of the bed. (New mattress is about 4" taller than old one, and he will have to re-learn to not smash his head on the joists and pipes above his loft.)
Cleaned up everything we had moved out of the way for the shenanigans.
At this point the various exertions caught up with me. I took my prescribed pain medication, THC, and spent about three hours vaguely not-watching a movie while resting my eyes.
And then, about twenty minutes ago, I spilled a bowl of boiling water on my hand. Whee.
It has been a DAY.
Went to my first hand OT appointment. I really liked the therapist! She has EDS and has had THREE reconstructive surgeries on her joints because her connective tissue is dogshit, so she absolutely understood - for the first time I have ever experienced with ANY physical therapist!! - my concerns and problems with PT and OT in the past. I have a massage ball, some gentle exercises, and optimism about the future of this process.
Came home and immediately went mattress shopping. Affordable Mattress, on Rice St. in St. Paul, is exactly what it says on the tin. Affordable. Mattresses.
Purchased a mattress, box spring and cheap metal frame for eldest child, whose ex is keeping their bed, and arranged for it to be delivered on her move-in day. Purchased a mattress for younger child, who informed us that there was an actual spring sticking loose in his and he's been sleeping around it for a while now. Purchased a memory foam mattress for spouse and I. Arranged for delivery of the latter two mattresses to our house, today.
Delivery was, very clearly, CURBSIDE. And since this is Affordable Mattress and not fancy-ass mattress, there is no 'mattress disposal' in this situation.
Accepted delivery. Moved old king mattress to temporary location blocking entire front window. Spouse put an ad up on Craigslist. (If you are in the Twin Cities and want a used flippable king mattress, about four years old, LET ME KNOW.) Wrestled memory foam king mattress through our very small, crowded house to bedroom. (All on one floor, thank goodness.) Memory foam collapses and does not steer through hallways very well. Son cleared his old mattress out of his loft frame and hauled his twin mattress down. I help very mildly in the making of the bed. (New mattress is about 4" taller than old one, and he will have to re-learn to not smash his head on the joists and pipes above his loft.)
Cleaned up everything we had moved out of the way for the shenanigans.
At this point the various exertions caught up with me. I took my prescribed pain medication, THC, and spent about three hours vaguely not-watching a movie while resting my eyes.
And then, about twenty minutes ago, I spilled a bowl of boiling water on my hand. Whee.
It has been a DAY.
Over the course of 2-3 hours, drink three mugs of warm-to-hot green tea with honey, then one mug of broth. Repeat.
(Green tea and honey both have antioxidants that *might* give a boost to immune response; warm beverages help loosen congestion especially if you hold the steaming mug under your face; honey is a very mild antibacterial; the 3-1 ratio of sugar to salt is very approximately the proportion for rehydration drinks; the steady mild influx of calories can help moderate blood sugar levels a bit while one is uninterested in or unable to eat more food.)
I am not a doctor, ymmv, obviously make whatever substitutions work for you, this works best if you have an electric kettle, this is an extremely general recommendation, you do you.
Why, yes, I am sick, and I am incredibly whiny about it.
(Green tea and honey both have antioxidants that *might* give a boost to immune response; warm beverages help loosen congestion especially if you hold the steaming mug under your face; honey is a very mild antibacterial; the 3-1 ratio of sugar to salt is very approximately the proportion for rehydration drinks; the steady mild influx of calories can help moderate blood sugar levels a bit while one is uninterested in or unable to eat more food.)
I am not a doctor, ymmv, obviously make whatever substitutions work for you, this works best if you have an electric kettle, this is an extremely general recommendation, you do you.
Why, yes, I am sick, and I am incredibly whiny about it.
I would thrive in a doomed narrative
Oct. 19th, 2024 06:22 pm1. I was nineteen when I realized that, in any Heinlein story, I would be one of the millions, billions, left behind to die on Earth. It was my first understanding that I am not a protagonist. I am too fat, slow, and sickly to be a protagonist.
2. When I was ten I realized that I would not live to see my thirtieth birthday. That the world would end in nuclear conflagration before then. We had just moved to the Chicago metro area, and I was grateful because it meant my family and I would be killed in the first waves. Every day the bombs didn't fall, I was glad to be alive.
3. On a family vacation when I was fourteen I had a dream of the end of the world. It was crystal-clear, incredibly detailed, and it said I died, along with everyone and everything else, the summer after my twenty-ninth birthday. I woke in tears, sobbing silently on the couch in the basement rec room where we were staying. Anything I wanted to get done would have to be done before then.
4. When I was twelve I discover the Uncanny X-Men and New Mutants comics. As I devoured these stories through junior high and high school, I internalized what I believed was the primary message of those comics -- Everyone will hate you no matter what you do. The world will try to kill you, over and over again, simply for what you are. You are going to die; what matters is how you go. Go fighting. Always make them work for your death.
5. When I turned thirty I realized I wasn't dead. So, now what?
Every day past my thirtieth birthday has been a gift. Every day has been another opportunity to spit in the face of those who hate me, fear me, would see me dead. Every day I am alive is at the caprice of an uncaring universe; I dare not waste them. Every day I yet live is a twisting thorn in the side, a sliver in the foot, a papercut between the fingers of small-minded apocalypse-humping unloved unwanted kleptocratic wannabe feudal lickspittles.
I'm not afraid to die.
I was, when my kids were little, because I wanted to see them grown. But now they are adults, and I'm back to being unafraid. I mean, I don't WANT to die, there's so much left to learn, to see, to do, to know! Existence is friggin' AMAZING and I am in no rush to stop enjoying it. But I'm not afraid of death. It might hurt, sure, but so does healing surgical laser burns in my throat. So does walking. I'm not afraid of pain. I dislike it enormously! But I'm not afraid.
I hesitate to tell people that I am largely an optimistic person because I'm ready to die at any moment, that I'm not afraid because then at least there will be no more "I" to feel "pain," that I have had twenty-one years of days I never expected, days that contained my partner, our kids, decades of friends, multiple accomplishments of which I am proud --
-- I just, I --
If this narrative is doomed, well, no, it's not. Humanity has been doomed multiple times. And I mean, DOOMED at least once. Will the world as I know it last? Well, that's a different question. Worlds end all the time. Ask the fucking Lakota. Ask Gazans. People die, and humanity goes on.
If this narrative is doomed, so what? Our world might end, and us with it. If you're dead, if I'm dead, there won't be a "we" to form an opinion about it. And if the world ends and we live? Ask Ashville. Ask Ukraine. Ask the Lakota.
However doomed I may be by the narrative, it doesn't matter. Every day past age thirty is a gift.
Being a part of the narrative, however fucking doomed, is a gift.
2. When I was ten I realized that I would not live to see my thirtieth birthday. That the world would end in nuclear conflagration before then. We had just moved to the Chicago metro area, and I was grateful because it meant my family and I would be killed in the first waves. Every day the bombs didn't fall, I was glad to be alive.
3. On a family vacation when I was fourteen I had a dream of the end of the world. It was crystal-clear, incredibly detailed, and it said I died, along with everyone and everything else, the summer after my twenty-ninth birthday. I woke in tears, sobbing silently on the couch in the basement rec room where we were staying. Anything I wanted to get done would have to be done before then.
4. When I was twelve I discover the Uncanny X-Men and New Mutants comics. As I devoured these stories through junior high and high school, I internalized what I believed was the primary message of those comics -- Everyone will hate you no matter what you do. The world will try to kill you, over and over again, simply for what you are. You are going to die; what matters is how you go. Go fighting. Always make them work for your death.
5. When I turned thirty I realized I wasn't dead. So, now what?
Every day past my thirtieth birthday has been a gift. Every day has been another opportunity to spit in the face of those who hate me, fear me, would see me dead. Every day I am alive is at the caprice of an uncaring universe; I dare not waste them. Every day I yet live is a twisting thorn in the side, a sliver in the foot, a papercut between the fingers of small-minded apocalypse-humping unloved unwanted kleptocratic wannabe feudal lickspittles.
I'm not afraid to die.
I was, when my kids were little, because I wanted to see them grown. But now they are adults, and I'm back to being unafraid. I mean, I don't WANT to die, there's so much left to learn, to see, to do, to know! Existence is friggin' AMAZING and I am in no rush to stop enjoying it. But I'm not afraid of death. It might hurt, sure, but so does healing surgical laser burns in my throat. So does walking. I'm not afraid of pain. I dislike it enormously! But I'm not afraid.
I hesitate to tell people that I am largely an optimistic person because I'm ready to die at any moment, that I'm not afraid because then at least there will be no more "I" to feel "pain," that I have had twenty-one years of days I never expected, days that contained my partner, our kids, decades of friends, multiple accomplishments of which I am proud --
-- I just, I --
If this narrative is doomed, well, no, it's not. Humanity has been doomed multiple times. And I mean, DOOMED at least once. Will the world as I know it last? Well, that's a different question. Worlds end all the time. Ask the fucking Lakota. Ask Gazans. People die, and humanity goes on.
If this narrative is doomed, so what? Our world might end, and us with it. If you're dead, if I'm dead, there won't be a "we" to form an opinion about it. And if the world ends and we live? Ask Ashville. Ask Ukraine. Ask the Lakota.
However doomed I may be by the narrative, it doesn't matter. Every day past age thirty is a gift.
Being a part of the narrative, however fucking doomed, is a gift.
I think I'm skipping Yuletide this year
Oct. 16th, 2024 10:57 pmI'm a pretty cheerful person. I perpetually, some might say obnoxiously, see the upside or humor of any given circumstance or event. But the last few years have really been kind of a shitshow.
I'm not doing Yuletide this year. I think it's my first skip in over a decade? Maybe?
Because, and here's the thing. The thing is, there are always different ways to narrate any sequence of events. You could say, oh my god, my day has been nothing but awful, I ran late because my kid hid my work bag, and then I got into a car accident on the way here! Or you could say, I feel so lucky, my kid made a card for me and snuck it into my work bag, and one the way here a car ran a red light and hit me, but it just took of my bumper and no one was hurt! Both are true.
I am incredibly fortunate. I have a home I love, a spouse and kids who love me and who are present in my life, I had a great career and retired early, I have friends and extended family, hobbies and interests, I live in community and I even like the weather here! All of those things are true.
I also wake up every day and assess how much I hurt. On low pain days I make a plan to get as much done as I need to as early as possible, and take pain meds as soon as I can. On high pain days I delegate or skip as many tasks as I can and just take the meds. All of the meds I currently have access to make me loopy, get me high, make me stoned - at least for a few hours. Which is lovely in that I don't care about the pain for a bit, but shitty in that I can't function. I can't drive, I should NOT make important decisions or have emotionally complex conversation. I can't mask my autism very well, I get confused by what people say and I can't mirror their emotional state. I have trouble forming complicated sentences and thinking of the right word. I can't track people's conversation for more than a couple sentences. I forget everything. I forget everything.
I had hopes for my retirement. I imagined travel, going to SF/F cons around the country. I imagined spending time with friends in other cities, people I've barely met but know way too much about. :grins: Instead I have chronic illness and disability, my immune system is three badgers in a minivan and there are a number of raging pandemics all of which are far far worse for the immunnosuppressed, my spouse has chronic illness and disability, our kids are tentative young adults who occasionally crash and ask for some help, and the national and global news is in year eight of the sort of nightmare I used to read about in the science fiction section of the library.
I am on so many drugs. I need so much infrastructure to travel. (Though I am so goddamn grateful I no longer have a tracheostomy!!) My spouse's illness means I often am needed at home. I am so helplessly angry about how she has been treated by the medical establishment that I daydream about that Denzel Washington movie where he holds a hospital hostage to get medical care for his son. I am depressed, even through the med I'm on. I am slowly trying to recover from autistic burnout, from masking without letup since I was fifteen years old, from knowing that everything about me was wrong and that I was a horrible person who did nothing but hurt the people I cared about unless I was eternally vigilant and never ever let them know who I really was. I am trying to learn what "feelings" are, trying to learn what I want in the absence of shaping myself to fit a hole in the life of someone I loved. On a good pain day my feet hurt, and my ankles, and it gets in my knees a bit. On a medium day it's the feet, ankles, calves, shins, knees, hips, and the bit of sciatica that the nerve ablation didn't quite catch. On a bad day it's in my shoulders, elbows, and hands, on top of everything else it's in my hands, hot sand grinding inside all the small joints of my fingers, a deep ache in everything until I move and then a sharp whufff of inhale as I unfocus my eyes and wait for the fucking knives to pull themselves out.
This isn't what I'd hoped. In so many ways.
And even now, depressed and stoned (but not so stoned that my feet stop hurting, no,) I think, but I can breathe and let me wish this for you, Gentle Reader, let me wish my wish for you that you never spend a night half-awake in the Emergency Department hallway wondering if the next time your twisted stump of epiglottis falls into your trachea and throttles you, will you be able to cough it out or will you need another tracheostomy in order to live, will you make it through the night until surgery in the morning or will the overnight surgeon have to save your life in the hallway -- may you, Kind Reader, never experience that. This is my wish for you.
But, I can breathe. I have a pension and savings and investments, I do not currently worry about money. I have a home I cherish. I have family and friends who care for me and I for them. I have good doctors and great insurance. I can breathe. I have a diagnosis. And I can breathe.
I am deeply fortunate, and deeply grateful. And I am depressed, burned out, and in ever-present pain.
There's always more than one way to narrate a series of events and circumstances. Always more than one opinion to hold, point of view to have.
At any rate, I think I'll be skipping Yuletide this year.
I'm not doing Yuletide this year. I think it's my first skip in over a decade? Maybe?
Because, and here's the thing. The thing is, there are always different ways to narrate any sequence of events. You could say, oh my god, my day has been nothing but awful, I ran late because my kid hid my work bag, and then I got into a car accident on the way here! Or you could say, I feel so lucky, my kid made a card for me and snuck it into my work bag, and one the way here a car ran a red light and hit me, but it just took of my bumper and no one was hurt! Both are true.
I am incredibly fortunate. I have a home I love, a spouse and kids who love me and who are present in my life, I had a great career and retired early, I have friends and extended family, hobbies and interests, I live in community and I even like the weather here! All of those things are true.
I also wake up every day and assess how much I hurt. On low pain days I make a plan to get as much done as I need to as early as possible, and take pain meds as soon as I can. On high pain days I delegate or skip as many tasks as I can and just take the meds. All of the meds I currently have access to make me loopy, get me high, make me stoned - at least for a few hours. Which is lovely in that I don't care about the pain for a bit, but shitty in that I can't function. I can't drive, I should NOT make important decisions or have emotionally complex conversation. I can't mask my autism very well, I get confused by what people say and I can't mirror their emotional state. I have trouble forming complicated sentences and thinking of the right word. I can't track people's conversation for more than a couple sentences. I forget everything. I forget everything.
I had hopes for my retirement. I imagined travel, going to SF/F cons around the country. I imagined spending time with friends in other cities, people I've barely met but know way too much about. :grins: Instead I have chronic illness and disability, my immune system is three badgers in a minivan and there are a number of raging pandemics all of which are far far worse for the immunnosuppressed, my spouse has chronic illness and disability, our kids are tentative young adults who occasionally crash and ask for some help, and the national and global news is in year eight of the sort of nightmare I used to read about in the science fiction section of the library.
I am on so many drugs. I need so much infrastructure to travel. (Though I am so goddamn grateful I no longer have a tracheostomy!!) My spouse's illness means I often am needed at home. I am so helplessly angry about how she has been treated by the medical establishment that I daydream about that Denzel Washington movie where he holds a hospital hostage to get medical care for his son. I am depressed, even through the med I'm on. I am slowly trying to recover from autistic burnout, from masking without letup since I was fifteen years old, from knowing that everything about me was wrong and that I was a horrible person who did nothing but hurt the people I cared about unless I was eternally vigilant and never ever let them know who I really was. I am trying to learn what "feelings" are, trying to learn what I want in the absence of shaping myself to fit a hole in the life of someone I loved. On a good pain day my feet hurt, and my ankles, and it gets in my knees a bit. On a medium day it's the feet, ankles, calves, shins, knees, hips, and the bit of sciatica that the nerve ablation didn't quite catch. On a bad day it's in my shoulders, elbows, and hands, on top of everything else it's in my hands, hot sand grinding inside all the small joints of my fingers, a deep ache in everything until I move and then a sharp whufff of inhale as I unfocus my eyes and wait for the fucking knives to pull themselves out.
This isn't what I'd hoped. In so many ways.
And even now, depressed and stoned (but not so stoned that my feet stop hurting, no,) I think, but I can breathe and let me wish this for you, Gentle Reader, let me wish my wish for you that you never spend a night half-awake in the Emergency Department hallway wondering if the next time your twisted stump of epiglottis falls into your trachea and throttles you, will you be able to cough it out or will you need another tracheostomy in order to live, will you make it through the night until surgery in the morning or will the overnight surgeon have to save your life in the hallway -- may you, Kind Reader, never experience that. This is my wish for you.
But, I can breathe. I have a pension and savings and investments, I do not currently worry about money. I have a home I cherish. I have family and friends who care for me and I for them. I have good doctors and great insurance. I can breathe. I have a diagnosis. And I can breathe.
I am deeply fortunate, and deeply grateful. And I am depressed, burned out, and in ever-present pain.
There's always more than one way to narrate a series of events and circumstances. Always more than one opinion to hold, point of view to have.
At any rate, I think I'll be skipping Yuletide this year.
JFC it was the 'TISM
Oct. 16th, 2024 10:53 pmOne of the main skills I had in college was Being Sober when we were all drunk, stoned, or tripping if someone had to talk to An Authority Person for any reason. Ranging from, you know, buying cigarettes at the gas station to explaining to the security guards why we were up a five story fire escaping at 11:00 at night.
I now think that this is because I'm fucking AUTISTIC and was just masking all the time ANYWAY.
I now think that this is because I'm fucking AUTISTIC and was just masking all the time ANYWAY.
Just Trying to Unlock the Quest
Oct. 16th, 2024 10:51 pm-- see, no, it's not that I don't want to start that treatment,it's that I haven't unlocked the questline yet!
When I started, I was really glad that my character RNG'd an actual DIAGNOSIS, right? Like, I feel really, *really* bad for the folks playing characters without even a diagnosis! That whole starting area just sucks. I got to skip the I'm Not Crazy, I'm Sick quest. Thank fucking goodness.
So, anyway, I began the main quest-line in the zone, Find Care Providers. I got the Rheumatologist right away! I did slack off a bit at that point, and didn't do the Interventional Pain Management quest until a lot later. And I really really WANTED to do the Medical Cannabis quest, but it was faction-locked for me for a while. (My starting faction had Gold-Tier Health Insurance, but was locked to an employer who monitored my healthcare and didn't allow some things. I mean, it was a tradeoff, and I knew that from the start, and I don't regret my choice - EVERY faction has its ads and its disads, right - but it did faction-lock some stuff.)
After I completed Rheumatologist, it was time to grind faction with him and my PCP (primary care provider.) I got ultrasounds, MRIs, and CTs. I had labs taken. After all of those, I got the Immunosuppressor buff! It gave me a +1 to Stamina and a +1 to Range.
My Rheum had also given me the prompt for the next area, Podiatry. I struggled with the first quest, Find a Podiatrist. In my character creation, the RNG gave me Fat, which I really like but I understand it's not for everyone. What I hadn't realized, though, is that in the game it's a fucking debuff!! The first two Podiatrists I tried to faction were very hostile to my Fat. I eventually found a Podiatrist who was neutral to Fat. After I completed the fetch quests - X-Ray, MRI - she sent me on the Orthotics quest. That was actually pretty decent. I did the mainline quest, but I liked the buff I got from the reward, so I did the extra level. And??? The item and the buff are AMAZING. I got AFOs, which in addition to a massive range buff (and +1 STA) gave me a +2 to armor!! I spent some Development points and taught myself to knit socks, so now I have over a dozen pairs of knit socks that fit under the AFO and protect my skin from chafing. It's fantastic.
At this point my faction had shifted enough that I could finally to the Medical Cannabis quest!
***
dangitall, y'all, now I want this to actually be a video game.
When I started, I was really glad that my character RNG'd an actual DIAGNOSIS, right? Like, I feel really, *really* bad for the folks playing characters without even a diagnosis! That whole starting area just sucks. I got to skip the I'm Not Crazy, I'm Sick quest. Thank fucking goodness.
So, anyway, I began the main quest-line in the zone, Find Care Providers. I got the Rheumatologist right away! I did slack off a bit at that point, and didn't do the Interventional Pain Management quest until a lot later. And I really really WANTED to do the Medical Cannabis quest, but it was faction-locked for me for a while. (My starting faction had Gold-Tier Health Insurance, but was locked to an employer who monitored my healthcare and didn't allow some things. I mean, it was a tradeoff, and I knew that from the start, and I don't regret my choice - EVERY faction has its ads and its disads, right - but it did faction-lock some stuff.)
After I completed Rheumatologist, it was time to grind faction with him and my PCP (primary care provider.) I got ultrasounds, MRIs, and CTs. I had labs taken. After all of those, I got the Immunosuppressor buff! It gave me a +1 to Stamina and a +1 to Range.
My Rheum had also given me the prompt for the next area, Podiatry. I struggled with the first quest, Find a Podiatrist. In my character creation, the RNG gave me Fat, which I really like but I understand it's not for everyone. What I hadn't realized, though, is that in the game it's a fucking debuff!! The first two Podiatrists I tried to faction were very hostile to my Fat. I eventually found a Podiatrist who was neutral to Fat. After I completed the fetch quests - X-Ray, MRI - she sent me on the Orthotics quest. That was actually pretty decent. I did the mainline quest, but I liked the buff I got from the reward, so I did the extra level. And??? The item and the buff are AMAZING. I got AFOs, which in addition to a massive range buff (and +1 STA) gave me a +2 to armor!! I spent some Development points and taught myself to knit socks, so now I have over a dozen pairs of knit socks that fit under the AFO and protect my skin from chafing. It's fantastic.
At this point my faction had shifted enough that I could finally to the Medical Cannabis quest!
***
dangitall, y'all, now I want this to actually be a video game.
Go Become an Air Traffic Controller
Oct. 10th, 2024 12:40 pmFolks, tell your teen and 20-something friends to try to become air traffic controllers.
I made a lot of smart choices and had a lot of luck.
However.
I made six figures for the last few years of my career, I retired at age 49 1/2, have my house paid off, have no debts, and get about 65% of my former take-home pay as my retirement pension.
Like.
My dudes.
Fuckin' go be air traffic controllers.
(You can't be diagnosed with ADHD or other neurodivergence, must be under the age of 30 to apply, and must be in good health. This strikes out nearly every single person I know, but SPREAD THE WORD.)
https://www.faa.gov/be-atc
I made a lot of smart choices and had a lot of luck.
However.
I made six figures for the last few years of my career, I retired at age 49 1/2, have my house paid off, have no debts, and get about 65% of my former take-home pay as my retirement pension.
Like.
My dudes.
Fuckin' go be air traffic controllers.
(You can't be diagnosed with ADHD or other neurodivergence, must be under the age of 30 to apply, and must be in good health. This strikes out nearly every single person I know, but SPREAD THE WORD.)
https://www.faa.gov/be-atc
Things I am enjoying:
Oct. 3rd, 2024 01:06 pm1. Agatha All Along
2. The movie and tv works of Mike Flanagan
3. Civ 6
4. Our household pets; they are all very good
5. Autumn weather
6. Spooky season
7. THC
8. Did I mention Agatha All Along????
2. The movie and tv works of Mike Flanagan
3. Civ 6
4. Our household pets; they are all very good
5. Autumn weather
6. Spooky season
7. THC
8. Did I mention Agatha All Along????
minor obsessions
Sep. 26th, 2024 03:59 pmI am currently reveling in obsession with the following things:
1. Lego, of the Thai Pop group LYKN, performed as his solo during their concert, the Bollywood - Thai hit song "Dhoom Dhoom"
subclause: this led me into an internet rabbithole about kathoey, or ladyboys, and their place in Thai culture and society.
2. The tv show From. The set-up is simple. People are driving somewhere. And they find a huge dead tree blocking the road, with a murder of crows circling above it. After that it is too late. The people can't leave the small town they find themselves in. They are trapped, along with everyone else this has happened to. And at night, monsters come.
I am mesmerized by this show! The acting is great. The writing is good. Some of the folks making it are veterans of Lost and other shows of that ilk. The big questions of what is going on and how will these people get home are good, not too distracting. What I love, though, the part I am FASCINATED with, is every scene when a new car rolls into town, and the people who are already there have to, to convince the newcomers (who truly believe that they are just turned around and need directions back to the highway) to leave their vehicle and come hide in a diner or post office because there are monsters in the dark.
I mean, I just -- it's great fun!
Now, I am halfway through season 2, and typically shows like this bog down in their lore and cleverness-attempts. We shall see how this one fares!
1. Lego, of the Thai Pop group LYKN, performed as his solo during their concert, the Bollywood - Thai hit song "Dhoom Dhoom"
subclause: this led me into an internet rabbithole about kathoey, or ladyboys, and their place in Thai culture and society.
2. The tv show From. The set-up is simple. People are driving somewhere. And they find a huge dead tree blocking the road, with a murder of crows circling above it. After that it is too late. The people can't leave the small town they find themselves in. They are trapped, along with everyone else this has happened to. And at night, monsters come.
I am mesmerized by this show! The acting is great. The writing is good. Some of the folks making it are veterans of Lost and other shows of that ilk. The big questions of what is going on and how will these people get home are good, not too distracting. What I love, though, the part I am FASCINATED with, is every scene when a new car rolls into town, and the people who are already there have to, to convince the newcomers (who truly believe that they are just turned around and need directions back to the highway) to leave their vehicle and come hide in a diner or post office because there are monsters in the dark.
I mean, I just -- it's great fun!
Now, I am halfway through season 2, and typically shows like this bog down in their lore and cleverness-attempts. We shall see how this one fares!
Some mornings are like that
Sep. 24th, 2024 10:20 am1. Recovery from surgery is going great. It's great! It's far, far better than I feared. It hurt like absolute heckin' heck for a couple weeks, that's for sure, but now I am simply pleased.
2. At 7:39 this morning our neighbor said that their garage, in which our adult son had been storing his $3000 ebike while our garage is torn down and rebuilt, was broken into last night and said ebike was stolen.
3. Our eldest has broken up with their partner of three and a half years, and we are heavily enmeshed in what the next step of her housing is going to be. I.e., are we cosigning a mortgage with her. This is still is process/flux/chaos, tbd.
4. The garage and ADU build moves along in fits and starts due to the vagaries of the inspection schedule.
Lot of moving parts, is all I'm saying.
2. At 7:39 this morning our neighbor said that their garage, in which our adult son had been storing his $3000 ebike while our garage is torn down and rebuilt, was broken into last night and said ebike was stolen.
3. Our eldest has broken up with their partner of three and a half years, and we are heavily enmeshed in what the next step of her housing is going to be. I.e., are we cosigning a mortgage with her. This is still is process/flux/chaos, tbd.
4. The garage and ADU build moves along in fits and starts due to the vagaries of the inspection schedule.
Lot of moving parts, is all I'm saying.
Recovery is as recovery does
Sep. 13th, 2024 10:39 amOne week after my palate reconstruction, and things are looking good:
1. I have been cleared to carefully attempt eating very soft solid foods. Yay!
2. I can expect another three weeks of pain and discomfort. Ooof. My doc did say that this is one of the most painful throat surgeries to have done.
3. I keep taking pictures of the inside of my mouth because I find wounds and healing to be VERY COOL.
4. No, I will not share them here because they are very phobia-triggering in addition to being very ... goopey.
5. I am spending my days getting minor tasks done around my narcotics schedule. Ooof.
Onwards and upwards.
1. I have been cleared to carefully attempt eating very soft solid foods. Yay!
2. I can expect another three weeks of pain and discomfort. Ooof. My doc did say that this is one of the most painful throat surgeries to have done.
3. I keep taking pictures of the inside of my mouth because I find wounds and healing to be VERY COOL.
4. No, I will not share them here because they are very phobia-triggering in addition to being very ... goopey.
5. I am spending my days getting minor tasks done around my narcotics schedule. Ooof.
Onwards and upwards.
Surgery went well!
Sep. 6th, 2024 08:50 pmI am home, surgery went really well. My hospital experience was a good one. I am in a lot of pain, which will last about three weeks. I have only ejected gatorade from my nostrils ONCE, which is great. I can breathe through my nose!!!!!!
I have the really good drugs and keep nodding off. This is good.
I have the really good drugs and keep nodding off. This is good.
A new and different throat surgery!
Sep. 1st, 2024 08:22 pmOn Thursday the 5th I have a new and different throat surgery scheduled! I am genuinely excited about this because
1) my larynx is visible! My supraglottic area is OPEN! The Enbrel appears to be working as intended!!
2) At some point in the last two and a half years my soft palate was permanently damaged. I have both nerve (sensor and motor) damage as well as muscle damage. The practical effect is that I cannot breathe properly through my nose.
The solution to this is what I am calling a palate reconstruction. (I do not remember the specific name for exactly what he is doing.) It will be painful, the recovery will be longer and more painful than I am used to, and the risks of post-surgical swelling are high enough that this will be an inpatient surgery and I will be spending the night. Also, there is a real risk that the reconstruction will lead to a lifelong difficulty with food and liquids going up my nose when I attempt to swallow.
I accept these risks. The breathing thing is just a problem for me.
Anyway, this is all progress, this is good news, and I hope my recovery sucks as little as is possible.
1) my larynx is visible! My supraglottic area is OPEN! The Enbrel appears to be working as intended!!
2) At some point in the last two and a half years my soft palate was permanently damaged. I have both nerve (sensor and motor) damage as well as muscle damage. The practical effect is that I cannot breathe properly through my nose.
The solution to this is what I am calling a palate reconstruction. (I do not remember the specific name for exactly what he is doing.) It will be painful, the recovery will be longer and more painful than I am used to, and the risks of post-surgical swelling are high enough that this will be an inpatient surgery and I will be spending the night. Also, there is a real risk that the reconstruction will lead to a lifelong difficulty with food and liquids going up my nose when I attempt to swallow.
I accept these risks. The breathing thing is just a problem for me.
Anyway, this is all progress, this is good news, and I hope my recovery sucks as little as is possible.
