Category: musings

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.
*****
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!
*****
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/

One-Liner Wednesday: more fatigue

I’ve had a major uptick in my fatigue level so I haven’t been able to manage writing the couple dozen of posts that I wish I had over the last few weeks, but my health care team is working on a new batch of tests, a med change, and probably an additional diagnosis that may eventually lead to improvement, so stay tuned…

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2026/06/10/one-liner-wednesday-you-know-youre-tired/

One-Liner Wednesday: ditto

My reaction to Linda’s One-Liner Wednesday post today is “ditto.”

Bolt 70,000

Our 2017 Chevy Bolt just passed 70,000 miles (about 113,000 kilometers). We still love driving it and hope to keep it for years to come.

With gas prices as expensive as they are these days, it’s especially nice to be driving an electric vehicle. Bonus: we own solar panels in a community solar farm, so charging at home is very inexpensive.

I’m just hoping that, when we do decide to replace our Bolt, we will have lots of EVs from which to choose. EVs are winning increasing market share in most of the rest of the world, so the United States will be playing catch-up after the damage the Trump administration has done to the EV industry.

Smith blackout poetry ’26

For the past several years, the Boutelle-Day Poetry Center at my alma mater, Smith College, has offered a Blackout Poetry Project to the Smith community, including alums. In the blackout poetry style, one takes a page of pre-existing text and crosses out words or letters to create a poem. The pages are then sometimes embellished with color or other visual art elements. I have participated in prior years, such as the year when the theme was Emily Dashes, using the poems of Emily Dickinson.

This year’s theme is Monster Mash, creating blackout poetry using pages from Mary Wollstonecraft Shelley’s Frankenstein. As you can imagine, the work is quite dark in tone, so I decided to take page 22, which was sent to me from the Center, and transform it into a brighter message.

As it may be difficult to read from the photo, the words I chose to highlight are:
arouse a multitude
excite good people
restore life
a new promise

My visual artist friends will, I’m sure, forgive my rudimentary collage but I felt that we are all in need of a bit of sunshine today.

Write Out Loud ’26 recording!

As I wrote here, I was unable to attend the Write Out Loud ’26 event at the Fenimore Art Museum near Cooperstown, NY, last month, but I’m happy to share the newly released recording.


My poem “Nor’easter Numbers” is first on the program, read wonderfully by the fabulous Sharon Rankins-Burd. If you watch the video on YouTube and click on “more,” you can see the program and timings laid out so you can easily navigate to particular pieces. Enjoy! As always, feel free to comment.

Globe Trotter!

WordPress has informed me that I’ve unlocked a new achievement, Globe Trotter. It means that I have received views from 50+ countries.

Okay, it’s taken 12 years but still cool!

One-Liner Wednesday: EDS shirt

May is Awareness Month for Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder so I got a shirt!

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2026/05/20/one-liner-wednesday-summer/

The Colbert Questionert

My family and I have been recording and watching Stephen Colbert for years, beginning with his years as a correspondent on The Daily Show, followed by his entire run on The Colbert Report and his current gig as host of The Late Show, which is having its final shows this week. While CBS said that it was for financial reasons, the perception is that it was really the result of Stephen’s jokes about Trump, especially as CBS’s parent company was negotiating a sale that needed administration approval.

My occasional blog series, JC’s Confessions, was inspired by Stephen’s Midnight Confessions from his early years at The Late Show, which was followed by a book.

Another long-running feature was Stephen asking his famous guests to answer the Colbert Questionert, which was supposed to reveal their inner selves and be “fully known.” In homage to Stephen and his talented writing team, I, a distinctly non-famous person, will share and answer the Colbert Questionert.

1. What’s the best sandwich?
Grilled cheese, made with Cabot cheddar cheese (which is white, not the bizarre orange that some cheddars are) on homemade white bread
2. What’s one thing you own that you really should throw out?
Deteriorating sheet music that I inherited from a friend of my family when I was a child
3. What is the scariest animal?
A violent person with a gun
4. Apples or oranges?
Apples, because, as Stephen often notes, you can’t put peanut butter on an orange. Also, for me and my delicate constitution, oranges are too acidic.
5. Have you ever asked someone for their autograph?
Lots of someones, as I often ask poets to sign their books for me
6. What do you think happens when we die?
I think that our soul, which can also be understood as our consciousness, continues to exist as energy. This allows us to reunite with loved ones who have passed away and to live eternally within Divine Love, which is my interpretation of heaven.
7. Favorite action movie? The Incredibles, because it gives action without blood and gore.
8. Favorite smell?
fresh-baked bread
9. Least favorite smell?
ammonia
10. Window or aisle?
I like to sit in a window seat because I loved studying geology in college. I like to see the landforms and the clouds.
11. What is your earliest memory? I remember playing outdoors with my older sister and neighbors at the house we lived in when I was three.
12. Cats or dogs?
Dogs, although we only have people in our household due to allergies (and the fact that there is enough to do just taking care of each other)
13. You get one song to listen to for the rest of your life: what is it?
“Ich bin der Welt abhanden gekommen” from Mahler’s Rückert Lieder with mezzo-soprano Janet Baker.
14. What number am I thinking of?
Of course, I can’t answer this in Stephen’s absence, but my choice would, of course, be wrong.
15. Describe the rest of your life in 5 words.
Family – Love – Creativity – Service – Thinking

I don’t know if anyone will think that my answers make me “fully known” or not, but I do love that phrase because it appears in one of my favorite Bible passages, 1 Corinithians 13. Like Stephen, I am a Catholic and I wonder if that passage was in his mind when they decided to use that term in the Colbert Questionert. I find it a comforting concept because so many problems in life seem to stem from misunderstanding among individuals and groups.

I know that Stephen is not retiring so we will hear more from him in whatever creative vehicles he chooses. I will miss, though, hearing from him on a regular basis.

Thank you, Stephen, for all the years of laughter and insight. I hope you get a chance to rest and rejuvenate and spend more time with family after all your hard work.

And, maybe, you should answer your own questionnaire, so you, too, are “fully known.”

Postscript: On the next-to-last episode, Stephen did take the Colbert Questionert himself, asked by a parade of celebrities. I came back to edit this post to reflect the questions asked that night, but I wanted to still include these questions from earlier iterations.
A. Exercise: worth it?
Personally, no, except for physical therapy. One of the things that I’ve learned about my brain and body is that I don’t really get endorphin rush from exercise. I just get even more tired and, if I push too hard, will wind up needing a day or more of minimal activity or even bedrest to recover. My version of dealing with the chronic fatigue that can come with hEDS.
B. Flat or sparkling?
Flat, because my system doesn’t do well with bubbles.
C. Most used app on your phone?
Text. I use my phone as little as possible.