Category: musings

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.
*****
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/

One-Liner Wednesday: Gloria Steinem on storytelling

“Please tell your own story. This is the most important thing we can do for each other: to know each other through stories, and I hope so much that whoever you are, listening right now, you are able to do what you love, to be also the unique person you are.”
~~~ Gloria Steinem, from an interview for Netflix’s Famous Last Words, released after her death was announced last week

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2026/09/09/one-liner-wednesday-not-a-clue/

One-Liner Wednesday: Dolly Parton’s goal in life

When Dolly Parton was asked about her ultimate goal in life, she answered:
“Just to be happy, to be as productive as I can be, make as many people happy as I can, make as much money as I can, so I can do for more people. And I just want the freedom to work, and everybody else can have the money.”

Mission accomplished, Dolly. Rest in peace. The good you have done in the world will live on for generations.

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2026/09/02/one-liner-wednesday-getting-old/

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…
*****
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/

One-Liner Wednesday: Midnight Mousers released!

Midnight Mousers, an anthology of noir stories featuring cats, including one from my writer-friend Devon Ellington, is now available through Amazon and coming soon from bookshop.org.

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2026/08/26/one-liner-wednesday-ive-been-abandoned/

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.
*****
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/

One-Liner Wednesday: another example of the climate crisis

The drought in London, England is so severe that there was a dust devil over the weekend in Greenwich Park in an area that is usually covered in grass.

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2026/08/12/one-liner-wednesday-just-me-2/

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…
*****
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/

One-Liner Wednesday: Chiari

When I saw the specialized neurosurgeon last week, after posting here for positive vibes, they asked what my three most troublesome symptoms are and I answered, “Brain fog, fatigue, and balance problems;” they told me that surgery for Chiari malformation should help all three, so I will have that, probably in late October.

This update is brought to you as part of Linda’s One-Liner Wednesdays series. Join us! Find out more here: https://lindaghill.com/2026/08/05/one-liner-wednesday-the-kicker/

One-Liner Wednesday: good vibe request

Tomorrow (Thursday), I will have an initial consultation with a specialized neurosurgeon in Rhode Island who may be able to address some of my health issues and would appreciate any prayers or good vibes you feel moved to offer. ❤

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2026/07/29/one-liner-wednesday-nothing/