Category: poetry

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/

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.

National Poetry Month ’26

Here in the United States, April is observed as National Poetry Month. While my writing and activities are constrained by my health, it was my privilege to be involved with a couple of poetry events this month.

I was able to read a couple of my poems as part of the Tioga Arts Council‘s Poetry Out Loud event. Area poets gathered to read poems, their own or others’. I especially loved hearing from some of my friends of the Grapevine Poets and from Dante Di Stefano, whose spouse is director of the Tioga Arts Council. The amazing thing about the reading was that there were a number of participants who had never before done a reading or even attended one. We also had a wide range of work read, including a poem in Bengali which was a combination of singing and speaking.

For the third consecutive year, one of my poems was accepted to the Write Out Loud event at the Fenimore Art Museum near Cooperstown, NY. The performance was the evening before the Madrigal Choir of Binghamton’s spring concert and I knew I would not have energy to sing dress rehearsal, scoot to Cooperstown for the evening, and sing an afternoon concert the next day, so I happily ceded reading duties to Sharon Rankins-Burd, who read my poem “The Bridge” so admirably last year. This year, my poem “Nor’Easter Numbers” was the first poem on the program. I’m looking forward to the recording of the reading becoming available. I’ll post when it is! Update: the recording is now available here.

How did you celebrate poetry this month?

Baltic concert

Last Sunday, I sang a concert of music from the Baltic region with the Madrigal Choir of Binghamton under the direction of John M. Vaida.

It was a great experience for us and for our audience. We got to perform pieces by composers that were new to most of us. I added languages to my personal list of sung texts, Swedish and Estonian. We also welcomed the Fair Winds Quintet as our guests, made possible by a grant from the United Cultural Fund of the Broome County Arts Council. They played a set before the sung concert and another to begin the second half of the program after intermission. It was wonderful to have these talented local artists join us for the concert.

One of my favorite pieces on the program was “Cantate Domino”, a setting of part of Psalm 98 by the Lithunian composer Vytautas Miškinis. Another highlight was Sergei Rachmaninoff’s “Bogoroditse Devo” from his All-Night Vigil. I had first sung this under the direction of Dr. Bruce Borton with the University Chorus. Bruce had prepared a new edition of the Vigil for us to use and we later sang this movement in later programs, so it always reminds me of him. Bruce also became the second artistic director of the Madrigal Choir a few years before his retirement from Binghamton University. After the pandemic shutdown and the end of University Chorus, Bruce welcomed me to Madrigal Choir. Shortly after I joined, Bruce fell ill. I wrote about the last concert he conducted with Madrigal Choir here and about singing at his funeral and Madrigal Choir tribute here. This Rachmoninoff piece was part of a concert dedicated to Bruce at the University. I was grateful for the opportunity to sing it again, especially at Trinity Episcopal Church where Bruce had sung and volunteered for many years as a congregant.

I particularly loved the final piece of the program, a newly written hymn by Carolyn Winfrey Gillette, set to the tune “Finlandia” by Jean Sibelius. Rev. Gillette is a local Presbyterian pastor and hymnist with over 500 hymns to her credit. This poem, “O God of Love, This Is a Time of Turning”, was written in January, 2026, after speaking with a seminary friend serving in Minneapolis. We printed the words in the program and invited the audience to join us in singing – and they did!

We sang, “May we stand firm for truth and peace and justice;
May we leave fear and hatred far behind.”

May it be so.

SoCS: JC’s Confessions #35

reading difficulties

While this post will be stream of consciousness for Linda’s Stream of Consciousness Saturday on the prompt “easy/hard,” it is also part of my occasional series JC’s Confessions, so I will open with the usual non-SoC opening for that series.

In the first few seasons of The Late Show, Stephen Colbert did a recurring skit, then a best-selling book, called Midnight Confessions, in which he “confesses” to his audience with the disclaimer that he isn’t sure these things are really sins but that he does “feel bad about them.” While Stephen and his writers are famously funny, I am not, so my JC’s Confessions will be somewhat more serious reflections, but they will be things that I feel bad about. Stephen’s audience always forgives him at the end of the segment; I’m not expecting that – and these aren’t really sins – but comments are always welcome.

Reading, which is something that was usually easy for me, is now often hard to do.

As someone who loves reading and who is trying to be a writer and poet, that’s a hard thing to admit.

This change is mostly related to what has recently been diagnosed as hypermobile Ehlers-Danlos syndrome (hEDS), an inherited connective tissue disorder that affects collagen. Because we have connective tissue throughout our bodies, many different body parts and systems are affected and the symptoms and their locations vary over time.

For these last couple of years, I’ve been having a lot of problems with my brain and with fatigue.

I often have brain fog, which makes it difficult to concentrate. This makes it hard to read anything that is long, like books. I do better with short things, so I do a lot of my reading these days in the forms of emails, so, given what is going on, I read commentary on political topics and environmental problems and some Catholic church/social justice news that lands in my inbox.

You would think that poems would be perfect for my length limitations, but, sadly, this isn’t the case. I’ve largely lost contact with the creative side of my thinking, making it hard for me to read poetry most of the time, as I am not able to really appreciate the art of the poet. I hadn’t realized how much of my own creativity is wrapped up in reading someone else’s work. I do still manage to do a bit of reading of poems, especially my poet-friends’ work, but it’s frustrating and sad for me, knowing that I can’t fully appreciate their artistry.

I also have severe limits on how long I can read, write, or concentrate. I’m writing this in the morning and hope to draft one other practical letter I need to write, but that will probably be about it for the day because I will be very tired afterward. In order to have energy to go to vigil mass at 4:00, I’ll most likely spend the early afternoon lying down and resting.

It’s really hard to deal with these limitations on my brain power and energy.

There are also some other problems caused by my hEDS that interfere with my reading. I’m having a couple of problems with my eyes. I have some level of visual disturbance going on, especially with my left eye, which causes some blurring that isn’t able to be corrected with glasses. The problem isn’t with the eye itself but with the brain in processing it – at least that is the current theory. It may be related to dysautonomia, where the regulation of all those things that our bodies ordinarily do without our thinking about them goes a bit haywire. On rare occasions, I can concentrate hard enough on what I am looking at that I can get the blurriness to clear, although only for a short amount of time and at risk of ramping up the fatigue.

The other connective tissue-related eye problem is dry eye, which I treat with prescription drops, artificial tears, and taking flaxseed oil. These help but don’t eliminate the problem, which, on top of everything else, makes reading, especially onscreen, more tiring.

Now that we know about the hEDS, we may be better able to address some of the problems underlying this struggle I’m having with reading.

Or not.

I have a bunch of referrals to new specialists pending. I’m most anxious to find help for the brain fog/fatigue symptoms so that I can think and feel like myself again.

Meanwhile, I feel sad – and, sometimes, guilty – that I can’t manage to read my friends’ work or keep up with the torrent of news and commentary that I would like to do.

I try to give myself grace, but it’s hard.

*****
You are invited to join us for Linda’s Stream of Consciousness Saturdays. Find out more here: https://lindaghill.com/2026/03/20/the-friday-reminder-and-prompt-for-socs-march-21-2026/

several things…

By rights, there are several posts I should write but I don’t have the brain to do it so this post will be short takes on different topics glommed together. Sorry about that.

I am horrified by the US and Israel attack on Iran which included the assassination of many of their leaders, including the Grand Aytollah. I am also horrified by the couterattacks of Iran against many of their Middle East neighbors. None of this had to happen. In his first term, Trump walked out on a multi-country agreement that was keeping Iran from developing a nuclear weapon. If he had left it in place, there would not have been the pretense for these attacks now. I hope that Congress finds the courage to vote that this is not a valid use of presidential power; the US Constitution makes clear that only Congress has the power to declare war. Still, with the war underway, it will be difficult to stop it. I do think, though, that this constitutes grounds for impeachment. Unauthorized war certainly seems to fit the definition of a “high crime.”

If you need a brief break from the horror, you can visit my new (five-line) poem with Silver Birch Press. My blog post about it is here.

Yesterday, I got a COVID vaccine. Now that I am 65, I can choose to renew my protection more frequently. My last dose was in late August so that I had my strongest immunity for the Boiler House Poets Collective 10th anniversary residency several weeks later. Like all my other COVID vaccines, this was from Pfizer, which is fitting because B, T, and I all participated in the Phase III trial that led to its emergency authorization in the US in December, 2020. To my knowledge, T and I have never contracted COVID and I’d like to keep it that way, if I can. It is likely that I will be needing to travel to major medical centers in the coming months, so I thought it was prudent to re-up my resistance to COVID. While many people ignore the existence of COVID at this point, it is still out there infecting, sickening, and sometimes killing people, especially in the older demographic. I want to do everything I can to not be one of them, especially with so much else going on with my health.

While I can still get some reaction from the vaccine, it’s much milder than it was initially. I chose to have the shot in my right arm, which is already pretty severely affected by what appears to be thoracic outlet syndrome, so my right arm is very sore today. I’m also fatigued, but it’s hard to tell if the shot is contributing to that or not, as that has also been part of my hEDS symptoms for a couple years now.

There’s a lot more to say, but I don’t have the energy and focus to write more now. Wishing you as much peace and equanimity as you can find in the midst of all of this.

new poem on Silver Birch Press

Silver Birch Press has just published my tanka, “Natives“, as part of their BUGS & INSECTS series! Many thanks to Melanie and SBP for including me in this months-long series!

I really appreciate that SBP includes author notes. Here, it’s a chance to talk a bit about native plants and pollinators.

Please feel free to comment here or on the post itself, if you are so moved. Also, you can click around and read some of the diverse work centered around bugs and insects in this series or re-visit past series. I’ve loved participating in a number of Silver Birch Press prompt series over the past several years and hope to submit to more in the future.

SoCS: Be prepared

I grew up with the motto, Be Prepared.

This was very useful because we lived in a rural setting with no houses nearby so you couldn’t go to the neighbors’ house to borrow a needed tool or recipe ingredient. The grocery store was 20 miles away so it wasn’t easy to pick up bread or milk or whatever you might have run out of, so we kept a well-stocked pantry and freezer.

Even though I live in a neighborhood now – and have for years – I still tended to keep extra supplies on hand, in order to be prepared for a change in plans or an unexpected circumstances.

Still, though, despite preparations, there are some things for which we are never quite prepared.

Recently, I’ve had some instances of re-visiting my poetry chapbook, Hearts. The poems center on my mother, especially her final years when she was living with heart failure. We knew that she was slowly dying and tried to prepare but, when the time came, it was still somewhat of a shock. I know from discussions I’ve had with others that our preparations for loss are seldom adequate.

For me, there is, though, a certain comfort in trying to prepare, even when my preparations aren’t sufficient.

I’ll keep trying…
*****
Linda’s prompt for Stream of Concsiousness Saturday this week is to base your post on a word the starts with “pre.” Join us! Find out more here: https://lindaghill.com/2026/02/20/the-friday-reminder-and-prompt-for-socs-feb-21-2026/

SoCS: life chapters

I often think of my life in chapters.

They aren’t sequential or in blocks of time, though.

It’s more that they are organized topically.

For example, in my volunteer life, there are chapters around church, social justice advocacy, environmental causes, and school curriculum and committees when I was a parent.

In music, there is the church music and organ chapter, composition, and choral music, starting in high school, then Smith College both as a student and alum, decades with University Chorus at SUNY-Binghamton, and now with the Madrigal Choir of Binghamton.

In my personal life, the chapters are very long. Some as a daughter, granddaughter, and sister are life-long. Even though my parents and grandparents have all passed away, being a daughter and granddaughter is forever, as is being a sister.

Another long chapter which is ongoing is with my spouse B, who I met early in high school. We will celebrate our 44th anniversary later this year. I think that part of the reason we are who we are at this point is that we were able to grow and change together over all this time.

And then, there is my writing life, with chapters for school, what I think of as utilitarian writing like doing commentary, blogging, and poetry.

Two chapters that remain close to my heart are as a mom and, for the last 8 and a half years, a grandmother. Those chapters are the most forward-looking. I don’t think of my daughters’ and granddaughters’ stories as sequels to mine because they are their own authors but I am honored to be a chapter in their own books of life.
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “chapter.” Join us! Find out more here: https://lindaghill.com/2026/02/06/the-friday-reminder-and-prompt-for-socs-feb-7-2026/