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resoluteThis 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.
no subject
Date: 2024-12-21 06:54 pm (UTC)no subject
Date: 2024-12-23 01:47 am (UTC)no subject
Date: 2024-12-21 10:07 pm (UTC)♥♥♥♥♥♥♥♥
no subject
Date: 2024-12-23 01:48 am (UTC)I am sorry.
no subject
Date: 2024-12-23 03:22 am (UTC)It’s truly fine. Shit happens, as the poet says.
I’m sure there will be a time when writing is again a joy.
no subject
Date: 2024-12-21 11:30 pm (UTC)no subject
Date: 2024-12-23 01:50 am (UTC)It's funny; if you ask me how I am, I say fine. Because, ultimately? I am fine. In the grand scheme? I'm fine.
Not GOOD, no, I'm a long way from good. But there's a lot of individual things that are good.
So I'm fine, and heading towards slightly better.
Thank you.
:fistbump:
no subject
Date: 2024-12-23 09:08 pm (UTC)no subject
Date: 2024-12-24 05:15 am (UTC)no subject
Date: 2024-12-24 05:43 am (UTC)Your paragraph about autistic masking & self-knowledge, etc, etc, is a description of what has been going on with me. Thank you for that. I've finally got a therapist so I'm hoping for safe and honest discussions about it all.
no subject
Date: 2024-12-27 05:50 am (UTC)