Category: Stream of Consciousness Saturday

SoCS: typos

I don’t like having AI butting in with suggestions while I’m typing and I really don’t want to waste the energy it takes to run it, so I disable it as much as possible.

I disabled Gemini from my main Gmail inbox. A casualty of that is that I also lost spell check.

Mind you, spell check was there long before AI started butting in, but now it appears that you can only have spell check if Gemini is turned on.

While I try my best, I’m afraid that some typos have snuck into my emails.

I hope that people forgive them in exchange for my authentic voice, unaltered by AI.
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Linda’s prompt for Stream of Consciousness Saturday this week is “typo.” Join us! Find out more here: https://lindaghill.com/2026/09/18/the-friday-reminder-and-prompt-for-socs-september-19-2026/

SoCS: the reason

The reason I haven’t been posting much lately is that I am getting ready to have surgery for Chiari malformation in late October. There is a lot to do to get prepared, including a bunch of tests, which, along with the rest of my medical team visits has been taking up a lot of time and my limited brainpower.

I also was trying to keep some fraction of my volunteering and online advocacy going but now push has come to shove, as they say, and I am setting almost everything aside for now to concentrate on my health. I need to rest more and not tax my already over-taxed brain.

My poor brain has been spending the last 2 1/2 years without the right amount of cerebrospinal fluid and my symptoms seem to be intensifying a bit, so I need to acknowledge that. I knew I’d need to be on a long hiatus after the surgery, so I’m practicing now.

That being said, there are a few commitments that I plan to keep, the Boiler House Poets Collective residency at the Studios at MASS MoCA and the sing-along hosted by the Madrigal Choir of Binghamton. I may not be much help for either of them but it’s important for me to be there.

I’m giving myself permission to stop trying to keep up with all the causes that I usually do, so I’m up-to-date to do comments or letters to elected officials and government agencies or just contribute to conversation. I will try to read just my favorite writers and columns. I need to get used to deleting things without opening them.

Ironically, I may post here a bit more during the weeks remaining before surgery. If there is less to keep up with, I might be able to reserve some time and brainpower to post.

If I don’t manage it, you’ll know the reason.
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Linda’s prompt for Stream of Consciousness Saturday this week is “reason.” Join us! Find out more here: https://lindaghill.com/2026/09/11/the-friday-reminder-and-prompt-for-socs-september-12-2026/

SoCS: sleep problems

I have quite a few problems involving sleep – or the lack thereof.

I often have trouble getting to sleep, staying asleep, waking up early and not being able to get back to sleep, not feeling rested after sleep. I’ve tried various things to help, all the sleep hygiene sorts of things, physician directed melatonin and medications, etc. but nothing seems to work long-term.

It seems, now that we know about my hEDS, cervical instability, Chiari, and a few more diagnoses, my sleep problems at least make sense.

One thing in particular may be due to a specific diagnosis. I developed sleep apnea a couple of years ago, although I score low on the Epworth scale. I’ve been treating it with an autoPAP, so I am breathing adequately while I sleep, which is, of course, a good thing.

One thing I wonder, though, is if I developed apnea at this time due to my Chiari malformation. One of the things that Chiari can cause is sleep apnea, so I’m wondering if, after my surgery, my sleep apnea may improve or even disappear. Sleep apnea can be caused by hEDS, though, so maybe not. It just seems odd to me because I’ve had the hEDS forever, even though it wasn’t diagnosed until this year. On the other hand, the apnea doesn’t seem to have started until the Chiari developed, obstentisibly in March ’24 when this big batch of troublesome symptoms started.

So, this post reveals one of the dangers of stream of consciousness – that the brain runs off using background info that the reader can’t follow. I’ll try to go back and put in some links that may help this make a little more sense.

It’d probably turn out better if I slept on it, but there isn’t time for that…
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Linda’s prompt for Stream of Consciousness Saturday this week is “sleep.” Join us! Find out more here: https://lindaghill.com/2026/08/28/the-friday-reminder-and-prompt-for-socs-august-29-2026/

SoCS: baldness

When I was a child, my dad was bald. I didn’t think anything of it. It was just Dad – or as his first grandchild named him, Paco, which is how he is known here at Top of JC’s Mind.

Tucked in a corner of the large mirror over the dresser in my parents’ room was a card that read, “God made just so many perfect heads. The rest He covered with hair.”

When I was in my thirties, a friend was being treated for breast cancer. We were speaking on the phone one day when she told me that so much of her hair had fallen out that her husband was going to shave the remaining strands off later in the day.

I told her about my dad’s card and she laughed about revealing her perfect or maybe not-so-perfect head.

Later that week, she posted a photo of herself, bald with temporary tattoos of butterflies scattered across her scalp.

There was also a saying, “Bald is beautiful.”

She certainly was.
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The prompt for Stream of Concsiousness Saturday this week is “bald, balled, bawled.” Join us! Find out more here: https://lindaghill.com/2026/08/14/the-friday-reminder-and-prompt-for-socs-august-15-2026/

SoCS: travel

When B retired, we had planned to travel more.

More trips to London to see the UK branch of the family.

More mid-week getaways to the Finger Lakes or New England, avoiding the busier weekends and high seasons, now that B didn’t have to work Monday through Friday. Visits to friends and relatives.

We have been doing more travelling, but not in the way we had anticipated.

Instead, we have been doing a lot of medical travelling. A couple of trips to NYC to see the interventional radiologist and do some specialized testing. A trip to Providence, RI at the end of last month to meet with a specialized neurosurgeon. We will return there this fall for surgery. I might need to find an out-of-town nephrologist…

We are hoping that, by next spring, I may be recovered enough to travel for fun again.

It will give me something to dream about as I’m recovering…
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Linda’s prompt for Stream of Concsiousness Saturday this week is “travel.” Join us! Find out more here: https://lindaghill.com/2026/08/07/the-friday-reminder-and-prompt-for-socs-august-8-2026/

SoCS: tornado?

I live in the Southern Tier of New York State and, like many places on earth, we’ve had weather weirding going on as a result of climate change, caused primarily by the burning of fossil fuels. (Yes, even in Stream of Consciousness, I need to make sure I am clear on the science I present on my blog!)

This summer, we’ve had lots of big temperature swings. We’ve had lines of thunderstorms that have had high winds. That isn’t unusual for us but what is unusual is the level of damage we are seeing.

Sometimes, it is straight line winds but this year we have had an unusual number of tornados. On the weather report on television a few days, if I’m remembering correctly, we had had 12 confirmed tornados in the state so far this year, well above our average of 5. (I’m not sure if those are the correct figures as I may have misremembered, so don’t quote me on them without checking first.)

Fortunately, the tornados near us have been small and on the weaker side of the F scale they use to grade tornados. Still, they have broken trees and damaged buildings in their path.

There have been some other areas where there was similar damage but caused by straight line winds. The chief meteoraligist from channel 12 was able to go out with the National Weather Service personnel on investigation of a possible tornado. They were explaining how they tell the difference between tornados and straight line winds by looking at the debris pattern. With a tornado, the trees will fall in different directions, whereas with straight line winds the trees will fall in the same direction. I’m sure there are other factors that they observe to make their determinations, especially the radar signatures during the storm, but they always look at the debris patterns before making a final determination.

There are so many people in the US and around the world suffering from weather-related disasters these days. I’m living in a place that has been luck this year compared to so many other places. For me, all these weather events are reminders that we need to move as quickly as possible away from fossil fuels to try to keep further increases of these disasters at bay.

Let’s go!
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Linda’s prompt for Stream of Consciosness Saturday this week is “wind.” Join us! Find out more here: https://lindaghill.com/2026/07/24/the-friday-reminder-and-prompt-for-socs-july-25-2026/

SoCS: in a brain fog

Sometimes, I remember what I used to know and be able to do.

Sometimes, I can’t.

The brain fog from the cerebellar ectopia is perhaps being made worse by my decline in kidney function.

Or maybe by the summer weather.

Hard to say.

It’s scary, though, especially because it’s been going on for over two years now. There is hope for untangling all the underlying factors and treating them – or, at least, some of them – but probably no guarantee of getting back all my lost functionality.

Sometimes, I manage to be hopeful in a realistic sort of way.

Sometimes, not so much.

Today, not so much.
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Linda’s prompt for Stream of Consciosness Saturday this week is to begin the post with “Sometimes.” Join us! Find out more here: https://lindaghill.com/2026/07/17/the-friday-reminder-and-prompt-for-socs-july-18-2026/

SoCS: writing

I miss writing.

Because of the brain fog and fatigue I’ve had over the last couple of years as a result of my extra-stetchy connective tissue from my hEDS, I can’t spend as much time writing as I would like.

Some kinds of writing, like poetry, have become almost non-existent in my life. I feel like the creative side of my brain isn’t operational the vast majority of the time – and the more analytic side is only at half-capacity, at best. Heck, I have difficulty reading literature of any kind these days. I can sometimes manage to grasp poems, if it’s in the morning and they aren’t too long. I can’t read novels because I can’t get plots and characters to stick in my head over days. I can’t even manage non-fiction books because the brain fog is too thick to remember topics over the course of days and the fatigue level is such that I can’t read very long at a sitting. I’ve been trying to keep up by reading news and commentary articles and newsletters but have been so tired lately that my inbox is overflowing with unread material.

There has been so much happening here in the US that I’ve wanted to write posts about but haven’t been able to manage, which makes me sad. I keep thinking that the next specialist visit will give us something actionable to improve my condition but, instead, it usually means more tests are needed, which means waiting for the tests to be scheduled, doing them, waiting for them to be interpreted, waiting for the specialist to see the results and interpret them – which often yields a different result than the radiology reports that land in my health portal – and get back to me with what they think is going on. Then, maybe, we get to trying a treatment that may or may not work and then onto the next option or the next specialist.

I’m grateful, though, that this year I have a specialist who was finally able to diagnose my hEDS and cerebellar ectopia and that I finally have specialists who know what to try with patients like me. Unfortunately, I might need some pretty scary treatments, like brain surgery.

So, I’m grateful and scared and exhausted and anxious and tired of all the waiting and struggling and symptoms and uncertainty.

And I miss writing and being able to make it through a day without having to spend a good chunk of it lying down and being able to take walks without having someone with me in case I lose my ability to keep my balance and going to visit family and friends and being able to concentrate and speaking without having to search for the right word in some kind of frantic brain race.

I miss the life of the mind that I took for granted as part of my identity.

And here you have an illustration of why stream of consciousness writing is so dangerous to put out there, because this is a way darker post than I thought I was going to be writing when I started out with Linda’s prompt of the word miss and decided to write about missing writing.

It is, though, on brand with Top to JC’s Mind where I usually write honestly about whatever is top of mind for me, even when that mind is more scattered and glitchy and exhausted than it used to be.

There are two big imaging studies coming up for me this week and a hugely important appointment with a specialized neurosurgeon at the end of July. Meanwhile, I’m hoping against hope to get a few significant posts written here, as opposed to the last month which has not been very substantive.

Sigh.

I miss writing.
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Join us for Linda’s Stream of Consciousness Saturday! Find out more here: https://lindaghill.com/2026/06/19/the-friday-reminder-and-prompt-for-socs-june-20-2026/

SoCS: houseguests

It’s fairly unusual for use to have houseguests but we did this week.

B’s brother and spouse stayed with us overnight as they headed to a family vacation in Maine.

Now, it looks like we may have guests again in a couple of weeks when B’s college roommate heads through on the way to a vacation spot with his spouse.

Sometimes, it’s handy to be located near the intersection of three major interstate routes!
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Linda’s prompt for Stream of Consciousness Saturday this week is “guest.” Join us! Find out more here: https://lindaghill.com/2026/06/12/the-friday-reminder-and-prompt-for-socs-june-13-2026/

SoCS: sweet taste

My favorite foods are sweet.

I know that humans’ first taste preference is for sweetness. It’s why breast milk is so sweet.

Most people, though, go on to develop preferences for additional flavors. I, though, am not very tolerant of foods that are sour or bitter. Strong flavors are often physically painful for me and I’ve learned that something that most people perceive as mild are often overwhelming for me. This is especially true for hot/spicy foods, like peppers. I also don’t drink coffee or tea, which are just too bitter for me.

I wonder if this taste preference for sweet and intolerance for sour and bitter is a natural defense. One of the conditions that I have is interstitial cystitis, also known as painful bladder syndrome. (It’s probably also related to my hEDS and mast cell activation disorder, but I digress.) One of the ways to help reduce IC flares is to reduce acidic foods as much as possible. Most sour or bitter foods are also high in acid, so maybe my intolerance of those flavors is a self-defense mechanism.

By the way, salty foods are also bad for people with IC so I eat low-salt, as well. I don’t find salty foods physically painful, though, unless it is really, really, really salty, which feels like burning in my mouth.

I’m such a delicate flower!

And sweet! 😉
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Linda’s prompt for Stream of Consciousness Saturday this week is “sweet.” Join us! Find out more here: https://lindaghill.com/2026/05/15/the-friday-reminder-and-prompt-for-socs-may-16-2026/