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/

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Author: Joanne Corey

Please come visit my eclectic blog, Top of JC's Mind. You can never be sure what you'll find!

13 thoughts on “SoCS: writing”

  1. I’m sorry you have to go through all this and thankful you have a few people on your team who are really trying to help. You inspire me to be assertive regarding the maddening itch I’ve had for at least three months. It seems to be related to my brachial nerve sending mixed signals to my arms, neck and back. But I don’t know for sure, and I’m going to continue to ask for help. My fall a couple weeks ago was humbling, and, as my issues are relatively small, I can understand a small portion of your grief and continue to admire your persistence. I’m glad you were able to write this post and wonder if you could write some stream of consciousness poetry. It would be different from what you’re used to, but who knows? Prayers are on the way for you to have moments of peace and joy.

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    1. JoAnna, I’m sorry you are having some hard-to-pin-down medical issues these days. It’s hard to know sometimes where to turn for help when multiple body parts are involved. Theoretically, your primary care doctor should be able to get appropriate referrals in place but PCPs are often too flummoxed, and/or busy to give you the assistance you need and deserve. I hope that you will gain more clarity on underlying causes and therapies soon. If nerve compression is involved, it can be tricky to find a knowledgeable practitioner but I hope relief will be possible soon.

      I appreciate your prayers on my behalf. Stream of consciousness poetry would be very different because poetry relies so much on concision, precise word choices, and editing, none of which are features of SoC. Sometimes, writers will do a stream of consciousness session to generate ideas for poems. When my creative brain is working, I don’t usually do that kind of thing because ideas will appear spontaneously but I know a number of poets who do find that technique useful.

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      1. Thank you so much for your support, Joanne. Yes, I’ve noticed that PCPs are often flummoxed and busy which means we have to guide them sometimes. I’ve got acupuncture and chiropractic lined up, too.

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  2. i’m sorry to read that you still are searching for more answers and hope the upcoming appointments yield an understanding of what is needed to support you and help you recover. it must be so frustrating, i’ll be sending good thoughts your way –

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    1. Thank you, Thomas. The irony is that it took 65 years for my hEDS to be diagnosed, even though, as an inherited disorder, it had always been there. Knowing about the hEDS has helped my health care team identify some of the other disorders present, like the cerebellar ectopic.

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        1. Thanks, Thomas. There are going to be new diagnostic criteria published in Dec. with updated treatment protocols to follow in spring ’27. There will be a major educational push for health professionals so that they recognize hEDS/HSD sooner. I think they will find that it is much more common than its current designation as “rare” because it has been missed so often, as my case illustrates. Research continues to find a diagnostic blood test and to figure out the genetic underpinnings. All the other forms of EDS have a single defective gene but hEDS is a more complicated picture.

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  4. I’m so sorry, Joanne. And I completely understand not wanting to write something dark, but know there are people out here who care, who appreciate your honest posts.
    All the hugs and all the love to you as you hopefully get closer to getting better.
    P.S. I’m with JoAnna – you should try writing stream of consciousness poetry. There’s nothing that matches the healing power of having a creative outlet, even when what you produce isn’t your greatest work. And who knows? With practice, you may end up with something wonderful. 🙂

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    1. Thank you so much, Linda. I appreciate the support of you and our blogging family. I also appreciate those who say that my story helps them to advocate for themselves with the medical community. I also like raising awareness about EDS/HSD. I think we are close to a turn that will make it easier to be diagnosed – and will reveal that these disorders are more prevalent than is currently believed.

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