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/
Sometimes, I remember what I used to know and be able to do.
Sometimes, I can’t.
The brain fog from the cerebellar ectopia is perhaps being made worse by my decline in kidney function.
Or maybe by the summer weather.
Hard to say.
It’s scary, though, especially because it’s been going on for over two years now. There is hope for untangling all the underlying factors and treating them – or, at least, some of them – but probably no guarantee of getting back all my lost functionality.
Sometimes, I manage to be hopeful in a realistic sort of way.
Sometimes, not so much.
Today, not so much.
*****
Linda’s prompt for Stream of Consciosness Saturday this week is to begin the post with “Sometimes.” Join us! Find out more here: https://lindaghill.com/2026/07/17/the-friday-reminder-and-prompt-for-socs-july-18-2026/
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/
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.
On April 6, 2025, Pope Francis appeared in public for the first time after returning home from his long hospitalization. It was at the end of a special Jubilee liturgy for the sick and health care workers and others who care for them. He had written the homily and a special blessing for the mass, although they were read by others. Francis wrote:
In this moment of my life I share a lot: the experience of infirmity, feeling weak, depending on the others for many things, needing support. It is not easy, but it is a school in which we learn every day to love and to let ourselves be loved, without demanding and without rejecting, without regretting, without despairing, grateful to God and to our brothers for the good that we receieve, trusting for what is still to come.
I am currently entering the second year of dealing with a complex medical situation that has not yet been fully diagnosed. I don’t know if I will be able to be adequately treated or if I will continue to see progression in my symptoms.
It’s hard.
I confess that I am not always gracious in this situation. I manage to let others do things for me and to ask for accommodations if I need them, but I find it difficult to set aside regret and to trust in the future.
This is especially hard for me in regard to my future as a poet. I don’t know if I will regain the creativity I’ve lost to brain fog and fatigue. I’m even losing the concentration and attention to detail needed to do submissions for my already existing poems and manuscripts.
I’m trying not to get to the point of despair.
These next few weeks are important in that I have a new batch of tests and specialist visits coming up.
Maybe having some more information about what is happening will help me to be better with being sick.
Maybe not.
I’ll try.
(I realized when I went back in my blog to find the number confession this was that this confession is, in a way, a continuation of #30.)
I remember reading Linda’s prompt for Stream of Consciousness Saturday yesterday and thinking that I would pass this week because absolutely nothing came into my head, but, this morning, as I lay crumpled on my bed because taking a shower was too tiring and I’m trying to rest so I can participate in a poetry reading this afternoon, I thought I should post because I thought the prompt word was crumple but it was actually crackle, so never mind.
Yeah.
Brain fog.
*****
Please join us for Linda’s Stream of Consciousness Saturday! Details at the link above.
My year has been a mess.
(It’s probably dangerous to write about it in stream of consciousness but here goes…)
2024 has been largely spent trying to untangle personal and family health situations. In March, I developed a constellation of symptoms, including left side tinnitus and visual blurring, left side neck pain and stiffness, numbness/tingling most prominently on the left side of my head, balance problems, and brain fog and fatigue.
There has followed a bunch of tests, specialists, and physical therapy – with weeks and months of waiting – and a lot of ruling out of diagnoses, but no answers yet.
Given family history and my own research and trying to pull together all the scraps of information I get from my care team, I think I have a decent guess on diagnosis but it doesn’t really matter unless I can find a doctor willing to look at the whole situation instead of their own specialized body part.
Meanwhile, I’ve lost almost a whole year of poetry work. My creative brain isn’t functioning most days. Sometimes, I get a window first thing in the morning but often not. I’m spending most afternoons in bed because of the fatigue and because it is difficult to hold my head up without support for extended periods. If I push through and do too much on a day, I’m likely to pay for it by being largely non-functional for a day or two or three or a week afterward.
I’m also lacking in my ability to remember and keep track of things. My critical thinking skills are slowed down, too. I try to do tasks that involve a lot of thought early in the day to have the best chance of remembering and piecing things together.
It’s sad and terrifying and frustrating.
I feel like a lot of who I know myself to be is missing and I don’t know if or when it will be back.
A recent test seems to show poor blood flow in one of the arteries that supplies my brain. I’m hoping that this might give us a treatable thing to work on but I’m currently waiting for the appointment with the specialist who can interpret the test. There will probably be more tests before we get to the diagnosis/treatment part.
I don’t know if 2025 will bring my brain back or if I will be facing further deterioration.
I’ll try to let you know…
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “my year.” Join us! Find out more here: https://lindaghill.com/2024/12/27/the-friday-reminder-and-prompt-for-socs-dec-28-2024/
I don’t remember if I had a security blanket when I was little but I could sure use one now…
Linda’s prompt for Stream of Consciousness Saturday this week is “blanket.” Join us! Find out more here: https://lindaghill.com/2024/11/15/the-friday-reminder-and-prompt-for-socs-nov-16-2024/ (Admittedly, this is a very brief excursion in stream of consciousness, but I am really struggling with brain fog and fatigue lately and I figured a short post was better than no post.)
I thought I’d do a brief update on my health status, despite still being in the middle of the diagnostic swamp.
When I wrote my last update, I had not yet started vestibular therapy or had my hearing test. The hearing test ruled out hearing loss as a cause for the tinnitus. I’ve been making progress with vestibular therapy and my balance is improving, although fatigue or being out in the summer weather aggravates things considerably.
It’s looking increasingly like the basic problem may be in my neck, so I have just begun physical therapy on my neck and we are looking into referrals to specialists who might be able to arrive at a diagnosis.
Meanwhile, I’m continuing to operate at diminished capacity. The tinnitus remains constant. There is still a lot of fatigue and brain fog and some periods of fuzzy vision. The neck pain, headache, and tingling come and go. I have to be careful not to do too much on any particular day and sometimes need naps. I am cutting back on my responsibilities and activities, which is frustrating.
Stay tuned…
Joanne Corey 