This winter really kicked my arse. I had colds and flu three times (April, July, and August). And generally struggled with energy and motivation.
As of today I am taking a week of annual leave, and the only thing I need to do today is be awake and at home during the hour my groceries are scheduled to get delivered. This is a good amount of responsibility to have.
Over the next 9 days I want to do the following 3 things:
1. Take laptop in for repairs
2. Book and have an appointment with osteopath
3. Spend a night at my dad's.
Also do some chores around the house, but not to spend more than 2 hours a day on them.
Also finish The Stone Sky and start on The Shepard's Crown.
Also some Ingressing if the weather is nice.
Also lots of naps.
Maybe he would be diluted in a larger group? There were only four of us. And neither I nor the other two guys, whom I know from SF book group, are very good at grabbing the talking stick. Still Cameron seemed weirdly controlling. I think more than half the time was just Cameron talking, and he didn't leave spaces where other people could start talking if they wanted to; he'd call on us, like, "What did you think of it? Was there anything else that you liked?" And whenever anyone spoke up without being called on he'd say something like, "Yes, go ahead." He'd actually interrupt a person who was speaking in order to give them permission to speak. When he said he was a history teacher I thought, that explains it.
( spoilers )
On September 5th, I received my last loading dose of Spinraza (Huzzah!). After six tries and four successful injections, it seems that I have learned how to advocate the best circumstances for success. Pain meds help in allowing me to stay on the table longer and the longer I can stay there, the more chances for a successful lumbar puncture. The pain meds also help with recovery. The first few times we tried an LP, successful or not, it took several days for me to stop feeling sore. I also make sure I’m not put on the table until the radiologist and doctor are ready to go. That way they have the most time to get the needle where it’s supposed to go with as little pain as possible. So although the last loading dose took a couple hours before it was successful. It was successful!
Most of the staff were new to me. I started explaining what needed to be done and the staff were paying attention. After a bit my morning worker started taking over just by saying things like, “Wasn’t Guy’s wheelchair parked over there and you brought the lift over here?” Basically, asking questions that clarified my instructions. After a bit it was fascinating to watch. She knew me and she has been through this dance with me several times now. She knew what had worked. So I let her take over the logistics. As usual, the staff followed directions and were concerned with my comfort.
I have been paying attention to any physical changes since the treatments began. I didn’t feel much at first. Except that my breathing is easier. I’m worried that the improvement is just a placebo effect. I want to feel like all this effort amounts to something. Seems like the beneficial effects of the treatment are so subtle. loracs and I will be the only ones to notice.
I’m really looking forward to the next pulmonologist appointment. Then I will have some objective evidence that I’m actually improving. Until then I keep racking up observations. Along with stronger lungs, loracs has noticed the grip strength in my left hand is stronger. I feel some strength in my arms, but it’s not like I can suddenly raise my arm above my head. It seems like I can gesture a little more. I think I have a little bit more motion in my right hand when I use my trackball. Nothing I couldn’t do before, but it seems like I can do it longer and with less fatigue.
After the third dose, I noticed that my neck seems to be stronger. Driving in the car is always a bit of a roller coaster ride for me. I can’t hold my head very well, so it flops around a bit. I try to ride in the car in a reclined position, but that cuts into the sightseeing. I usually alternate between reclining and sitting straight up. Still, my head flops around more than I like. I’m noticing now that I can keep my head up most of the time. I also noticed that I can lift my head off the bed if it is at a little angle. I can’t lift it from completely prone. I don’t think I could lift it at all before the Spinraza.
On the possible negative side, I’ve noticed some tension headaches since the fourth dose. They don’t last long and they could just be hay-fever. The pain is similar, but I notice it when I’m being impatient or a little pissed. I am not at all sure if this is related to the drug. That’s about all I’ve noticed at this point. I think I’ll be getting a follow-up appointment in the future. So they can see where I’m at and decide what to do. I may get some physical therapy. (So I can look buff.)
On the reimbursement front, I received one of those “this is not a bill” statements from Medicare. It seems to say that all the hospital stuff is covered, but it doesn’t specifically say anything about whether the Spinraza has been covered. It even says that Connie’s services are covered but nothing about the drug. Connie seems optimistic they will get reimbursed. I’m disconcerted, but I’ll cope. Thanks everyone. I’ll keep you in the loop.
I could certainly style myself as a radical copyeditor, but somehow until recently I had missed the existence of The Radical Copyeditor, Alex Kapitan, a genderqueer copyeditor who blogs in the intersection between copyediting and politics, and also sells copyediting services. Believe me, I’ll be taking a deep dive soon. Kapitan says:
I believe that language matters, and that those of us who are working to manifest a better, more just world have a responsibility to use language in ways that describe the world we are working to create, rather than unconsciously perpetuating bias and prejudice.
Meanwhile, however, I wanted to introduce our readers to the very comprehensive The Radical Copyeditor’s Style Guide for Writing about Transgender People. You get a hint in the illustration above. Like all good manifestos, it comes with appropriate disclaimers:
A style guide for writing about transgender people is practically an oxymoron. Style guides are designed to create absolutes—bringing rules and order to a meandering and contradictory patchwork quilt of a language. Yet there are no absolutes when it comes to gender. …
There are profound reasons for why the language that trans people use to describe ourselves and our communities changes and evolves so quickly. In Western culture, non-trans people have for centuries created the language that describes us, and this language has long labeled us as deviant, criminal, pathological, unwell, and/or unreal.
… Just as there is no monolithic transgender community, there is also no one “correct” way to speak or write about trans people.
Then there’s How to use this guide and (perhaps more important) How not to use this guide. The how not to section includes links to some fine articles:
“words don’t kill people, people kill words”and the glossary introduction “there is no perfect word,” both by Julia Serano. The second link also takes you to Serano’s glossary of trans, gender, sexuality, and activism terminology
“I Was Recently Informed I’m Not a Transsexual,” by Riki Wilchins.
Then we get into the main course of the style guide, which is broken into three sections. I’m limiting myself to one example of each.
1.3. Transition is the correct word for the social and/or medical process of publicly living into one’s true gender.
Use: Chris transitioned at age 32; the transition process
Avoid: Chris is transgendering; Chris had a sex change; Chris had “the surgery”; Chris became a woman
Bias-free and respectful language:
2.4.3. Pronouns are simply pronouns. They aren’t “preferred” and they aren’t inherently tied to gender identity or biology.
Use: pronouns; personal pronouns; she/her/hers; he/him/his; they/them/theirs; ze/zir/zirs; Sam/Sam/Sam (and any other pronoun or combination)
Avoid: preferred pronouns; masculine pronouns; feminine pronouns; male pronouns; female pronouns
As J. Mase III once succinctly put it, “my pronouns aren’t preferred; they’re required.” A person’s correct pronouns are not a preference; neither are pronouns inherently masculine, feminine, male, or female: for example, a masculine person could use she/her/hers pronouns and a female person could use they/them/theirs pronouns.
Sensitive and inclusive broader language:
3.2. Do not use LGBTQ or its many variants (LGBT, LGBTQIA+, etc.) as a synonym for gay.
Use: LGBTQ people versus non-LGBTQ people
Avoid: LGBTQ people versus straight people
If you’re using an acronym that includes transgender people, it’s important to actually include trans people in the context of what you are writing about. For example, if you’re only writing about people in same-sex relationships, or if you’re trying to refer to everyone with a marginalized sexuality, don’t use LGBTQ. Some transgender people (15%) identify as straight.* LGBTQ and straight/heterosexual are not, therefore, opposites, and should never be treated as such.
As you can imagine from these tidbits, there is much more. The guide is thoughtful, careful, respectful, comprehensive, informative and — if you’re a copyediting nerd like me — well-written and entertaining.
If you write anything at all relating to these topics, bookmark it and refer to it regularly. I will.
Your response should be exactly 100 words long. You do not have to include the prompt in your response -- it is meant as a starting place only. Please use the appropriate prompt tag with your prompt response.
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If you are a member of AO3 there is a 100 Words Collection!
The prompts are:
57: The End
56: Song Titles II: Beatles Song Titles
55: Slow Burn
51: Shakespeare II: "For which of my bad parts didst thou first fall in love with me?"
45: Family of Choice
( The rest of the prompts )
Fandom: Harry Potter
Notes: For 100words prompt #59, Comfort and draco100 prompt #27, Hogwarts.
Flames dance in the fireplace, seasoned cherry logs scenting the air. Hermione leans against Draco. She cradles her tea in both hands and takes a deep breath, letting it out with a sigh.
"Tough day, Professor?"
Hermione hums. "First month of school is always rough. Teaching everyone to find their way around Hogwarts. Three firsties in tears this week." She tilts her head back to smile at him. "A nice fire and hot tea ready makes it better, though."
"Glad to hear it." Draco pulls a blanket from the back of the sofa. "Curl up and relax. You've earned it."