Tag: reading

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/

BCAC reading!

Just proving that I made it through the reading event at the Broome County (NY) Arts Council last night.

Things went well with poems, a short story in translation, music, paintings, and a film, all represented.

Thanks to Connie, Ann, and all the BCAC staff for making the America 250 exhibition and event possible. Thanks also to fellow poet Samantha Terrell who sent me this photo that her husband took while I was reading.

One-Liner Wednesday: BCAC America 250 reading tomorrow!

Binghamton NY area folks are invited to an event celebrating the Broome County Arts Council’s America 250 project tomorrow, July 16, at 6:30 PM, in which I will be participating.

This friendly invitation is part of Linda’s One-Liner Wednesdays series. Join us! Find out more here: https://lindaghill.com/2026/07/15/one-liner-wednesday-hey-dilly-dilly/

BCAC America 250 Project opening

Folks in the Binghamton, New York area can visit a special exhibition at the Broome County Arts Council, beginning today, July 3rd, and continuing throughout the month of July.

The official opening is tonight from 6-9 PM for First Friday. There will be visual and literary arts on display around the theme of our personal American heritage.

I am happy to announce that my poem, “Giovanni”, about my Italian-speaking, immigrant grandfather will be part of the exhibition.

On Thursday, July 16th at 6:30 PM, there will be a reading event in conjunction with the exhibition which will include the authors presenting their poems and personal recollections.

Please, join us, if you are able!

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/

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?

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/

Reblog: Carol Mikoda’s Outside of Time now available!

Originally published on the Boiler House Poets Collective site here: https://boilerhousepc.wordpress.com/2025/11/26/carol-mikodas-outside-of-time-now-available/

Photo caption: Carol Mikoda reading from Outside of Time at the North Adams Public Library (photo by Mary Beth Hines)

When Kelsay Books published Carol Mikoda’s Outside of Time in October, she celebrated with a reading at the North Adams Public Library. Carol was in residence at the Studios at MASS MoCA (Massachusetts Museum of Contemporary Art) as a member of the Boiler House Poets Collective. Participating in the reading marking the tenth anniversary of the Boiler House Poets were fellow Kelsay authors Joanne Corey (Hearts), Jessica Dubay (All Those Years Underwater), and Mary Beth Hines (Winter at a Summer House), along with Merrill Oliver Douglas, Judith Hoyer, Kyle Laws, Deborah Marshall, Eva Schegulla, and Wendy Stewart.

You can read and hear more of Carol Mikoda’s work on her Substack, The Yellow Table.

A birthday poetry reading

As I wrote about here, I am in North Adams for the 10th anniversary residency with my beloved Boiler House Poets Collective.

It is unusually warm for early October this year, which is, unfortunately, riling up some of my health issues, but I did manage to spend some time in the buildings at MASS MoCA (Massachusetts Museum of Contemporary Art) yesterday. Although I wasn’t putting pressure on myself to write, I was so moved by the Ohan Breiding Belly of a Glacier exhibit that I sat in the gallery and drafted a poem about it. Bonus: the centerpiece of the exhibit is a film and then I was able to sit in the related exhibit room to write so I got to rest and not have to worry about keeping my balance for a long bit.

Ohan Breiding – Even the stones are alive (a letter to the future), 2024


I was able to participate in workshopping with the poets before spouse B came to pick me up for dinner and the evening with one of your high school friends who still lives in the North Adams area. B and daughter T came into town to be able to attend the special Boiler House Poets Collective 10th anniversary reading on Saturday.

I was a bit nervous about reading, as my health has kept me from doing it much over these last couple of years, so I practiced a bit more beforehand than usual. We were thrilled to be reading at the North Adams Public Library in their third floor community space, which is part of the original mansion that became the library in 1898.

Through the wonders of alphabetical order, I introduced the group with a brief history and then read the two North Adams-themed poems I had chosen. It was very cool that the podium we were using was a gift to the library in honor of a local poet, artist, and teacher, D. Patrice Bolgen, who passed away in 2021.


The reading was fantastic! It was so great to hear a sampling of work from all ten of us: Joanne Corey, Merrill Douglas, Jessica Dubey, Mary Beth Hines, Judith Hoyer, Kyle Laws, Deborah Marshall, Carol Mikoda, Eva Schegulla, and Wendy Stewart. It meant a lot to me to have B and T there for the reading. My poet-friends surprised me with a card and birthday flowers – along with the traditional singing of “Happy Birthday to You” – after the reading.


We were also thrilled to be able to present our gift to North Adams for ten years of hospitality to the Boiler House Poets Collective, a collaborative poem that you can read at the beginning of the post. Wendy Stewart read it as part of the thank yous at the reading and we gave it to people who were at the reading. A larger broadside version is our gift to the library, The Studios staff, and other officials who make our time here so joyous.

A collaborative poem is one that a group of poets write together. For this poem, each of us contributed several lines on the theme of praising North Adams which a smaller group assembled into the poem. We were happy to be able to craft a special gift to North Adams in honor of our tenth anniversary in residence with The Studios at MASS MoCA.

After lunch, I was able to do a revision of the poem I had drafted in the Breiding exhibit on Friday in time to bring it to our workshopping session. I was glad to have something to bring as I had thought I might not manage it until Sunday or Monday. Of course, that means I don’t have anything prepared for today yet, so I think it’d better close this post and get over to the Museum or my studio and work on something.

Or take a deep breath and remind myself that there is no pressure to bring something to workshop today. I am among trusted friends who will understand if today is not my day to share.