resolute: (Default)
[personal profile] resolute
This isn't coherent, more of a list. Also, I know it's only November.

1. I spent January to almost October with a tracheostomy. This was to keep me alive during the many, many surgeries I needed and continue to need in order to keep me alive. My throat continues to try to grow closed, albeit at a slower rate. (The goal is to keep re-opening it until it learns to heal in the OPEN position.)

All the throat stuff has had a number of add-on effects. I no longer have an epiglottis, so swallowing is something that requires careful action, concentration, and holding my head/neck in the right positions. Something in the surgery/medication/??? has caused me to lose my sense of smell and hence taste. It is difficult to want to eat when nothing is rewarding.

2. I finally, finally received my official autism diagnosis. This is a relief! While I have known I am autistic for almost two years, some part of me felt like an imposter. That I was, I don't know, jumping on some sort of autism bandwagon? Maybe? But now I have my paperwork.

3. I think -- and it's always difficult to tell when one is in the middle of a thing -- I think I had (or still have) burnout from 2017 onwards. I lost the ability to read books, except for a bare handful of authors. I had trouble reading articles or posts. I couldn't listen to podcasts anymore, of any type. Music became irritating. I didn't sleep well. I couldn't write. I scrolled and scrolled and scrolled Twitter. In 2020 I stayed home from work while my kids did remote school. Both my kids graduated high school since then, with a very stressful amount of uncertainty as to whether or not this would happen. In 2021 I went back to work. In 2022 I took an enormous amount of leave in order to have surgery after surgery. In September 2022 I retired from my career as an air traffic controller.

In the past month, I have been able to read a couple books.

And I have managed to get some writing done.

4. I have stopped endlessly scrolling social media. In fact, I catch up on Tumblr two or three times a day, I check Bluesky once or twice, Mastodon the same. I don't backscroll, I don't catch everything. I grieve the loss of Twitter, but I also think it's been very, very good for me to just chill the fuck out and step back. This summer I disengaged further, and reduced time spent on Slack and Discord. I am trying to ground myself in here and now, and that means actually being HERE. Not everywhere in the world, all at once, invested in problems I have zero power to solve or influence.

5. This year I loved my yard. I loved the seasons, even when I was so, so painfully tired of winter. I loved the juncos and cardinals that came to the front shrubbery looking for the popcorn I put out a few times a week. We had a Yard Rabbit, and we named it Peter. Peter eventually invited Petrova, and then we had many baby rabbits. (All managed to survive the pack of terriers in our house, thank goodness.) The devouring rabbit hoard wrought devastation in our spring seedlings, but we found ways to protect the plants we cared about the most, and we put seedlings that bunnies do not prefer in. (Yes, this means we have put mint in the ground. God help us all.) We have another yard rabbit this fall, and she looks big and plump and muscled and ready for winter. We are calling her Peter as well. Is she the same rabbit? One of this spring's litter? Who knows, but she is Peter and she is welcome. (We put a 1-meter-tall cage around the new cherry tree, to protect it from hungry rabbits.)

6. Parenting young adult kids is challenging. Not in the way that previous parent stages were, because, of course not. Finding the line between respecting boundaries and giving space, vs. maintaining connection and being available for support, well, this is tricky. And I expect it's tricky from the other side, too. It is challenging, particularly in regards to financial support, because I do not always approve or previous money-decisions a kid has made with their own money. I have this feeling of "but if you made different decisions before you would not be in this pickle now!" But the past is in the past, and I think that, overall, my kids are trying to make good choices. They are young, and their priorities are not the same as mine, and they are still learning and growing and making starter-adult mistakes. But we are in relation with both kids, and providing support where we can, and things are cautiously decent.

7. Christmas of 2021 my spouse contracted a virus, and two weeks later she had Chronic Fatigue Syndrome. It has been nightmarish. There were times when it was difficult to look ahead and see a life worth living. HOWEVER. Some physicians who are pursuing the endemic enterovirus theory have an experimental program treating CFS with an antiviral nutritional supplement. My spouse, in conjunction with her doctor, has been following this program since this summer with nigh-fucking-miraculous results. Yes, she still has CFS, but she is back up to about 80% original functionality. I am still wary of having hope, just because the first 18 months of this horrible condition were so life-destroying. But things are looking good enough that it makes me want to cry on a regular basis.

8. We are in discussion with an architectural firm to replace our garage and add in a dedicated workshop, intentional storage, and an Accessory Dwelling Unit, or ADU, often referred to in the past as a mother-in-law-apartment. This is for a few reasons. One, our housemate is slightly too tall for the upstairs rooms he lives in. While this has been manageable, it's never been ideal, and as we all get older it gets less sustainable for him. Two, the garage will need fixing in the next 5-20 years, and it will not get EASIER to do as we get older. Three, we have a commitment to using and sharing space responsibly, with an eye towards increased flexibility of use. Our friends are getting older, our kids are young adults and may need to bounce back to our place from time to time, and we will just enjoy having some more space for things like crafting and a guest room. And ADU is a very, very expensive means of accomplishing these goals! We are still looking and planning. If we go ahead, we will break ground next year in the spring.

In conclusion, this has been a year of transitions in my life. Living with a trach and now without. Getting my autism diagnosis. Spouse's health improving. Some stuff with our kids. Talking about the ADU. Slowly resting my way past burnout. My extended family is having some changes. I've pulled back enormously from online social things. I've managed to start reading and writing again.

I hope that 2024 continues to improve.

What a difficult and wonderful year

Date: 2023-11-11 10:31 pm (UTC)
jesse_the_k: White woman riding black Quantum 4400 powerchair off the right edge, chased by the word "powertool" (JK 56 powertool)
From: [personal profile] jesse_the_k

I'm sorry for all the health crap you've had to handle.

Congrats on your autism diagnosis!

By your thorough documentation of #5, you've helped me understand why people love to garden.

I am thrilled re: your partner's CFS treatment.

Since I was diagnosed in 1991, I've watched from the sidelines while medical theories have come and gone. It's exciting to see multiple publications on the enterovirus theory of disease etiology in ME/CFS. Just yesterday I read about Tony Fauci's thoughts on post-viral illnesses. One tiny positive from the COVID pandemic could be understanding their mechanism.

Date: 2023-11-13 01:32 pm (UTC)
jesse_the_k: text: Be kinder than need be: everyone is fighting some kind of battle (Default)
From: [personal profile] jesse_the_k

Thanks for the drug name.

Date: 2023-11-12 02:35 am (UTC)
likeadeuce: (Default)
From: [personal profile] likeadeuce
Thank you for sharing all of this, it is good to keep up with you. I'm very glad to hear that J's health has improved, and I hope things continue to go better for her. Rooting for your throat to figure things out, too!

I occasionally feel bad that I don't really systematically update stuff about my life anymore (here or anywhere really) because there isn't a common place to communicate with the same people reliably, particularly not one with the kind of privacy protections I want. So I've kind of lost that reliable social proprioception we used to talk about and I'm still in touch with most of the people that I've gotten to know well, virtually, over the years, but it's not the same.

But things change, and I still have the capacity to check in with people, and I have a reliable group of local friends that I didn't have 10 or even five years ago.

Profile

resolute: (Default)
resolute

April 2025

S M T W T F S
  123 45
67891011 12
13141516171819
2021222324 2526
27282930   

Style Credit

Expand Cut Tags

No cut tags
Page generated Jul. 22nd, 2025 05:14 am
Powered by Dreamwidth Studios