Following up from yesterday’s post, my specialist appointment is resulting in an order for the next step toward diagnosis, an angiogram to evaluate the blood vessels in my neck.
I’m not sure how long it will take to get on the schedule but I’ll let you know when I have more information.
*****
Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2025/01/03/daily-prompt-jusjojan-the-3rd-2025/
So, despite all odds, I’m making another run at posting every day in January, courtesy of Linda’s Just Jot It January or #JusJoJan.
This is the 11th year Linda has hosted this initiative. I participated for the first time in 2015. While it’s not required to post every day, I usually manage it.
I admit that I try to stash away a few posts to throw in when I don’t have time and/or brain on a given day.
I have an appointment with a vascular neurologist later today, which may or may not help with the brain part of the equation.
Linda does offer prompts for the day on her blog, which many people find useful. I tend to do my own thing, other than her continuing One-Liner Wednesday and Stream of Consciousness Saturday series.
Please join us, once, twice, or up to 31 times!
*****
To join Just Jot It January, visit here: https://lindaghill.com/2025/01/02/daily-prompt-jusjojan-the-2nd-2025/
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/
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.
I try to take mental notes as I go through life in order to give myself guideposts for the future, to give myself advice as needed.
I have watched, sadly, some instances when, as people struggled with medical conditions, they stopped doing things because they were embarrassed to be seen needing assistance or having to do things differently.
As I’ve been dealing with my still undiagnosed health problems since March, I’ve tried to keep some of my commitments going, even though that has meant making major accomodations. For example, I’ve sung the last two Madrigal Choir concerts seated because my balance problems have made standing without support to sing impossible. I also only made it through our afternoon rehearsals by lying down before rehearsal and during our break because it’s difficult to hold my head up unsupported as the day goes on.
I’ve put other commitments on hold totally, even though I get “can’t you just?” comments. The truth is that whatever I do comes at a cost. If I push too hard, I pay for it with a surge of symptoms and fatigue that can go on for days. I choose to do that for a limited number of things but I can’t do it for everything or I literally would not be able to get out of the house – or even out of bed.
We may be close to getting, at least, a partial diagnosis and some treatment, if I’m lucky. I’m alternating between hope and despondency. I don’t know how much longer I can keep this unsatisfying balancing act going.
Do I have the humility to keep asking for the accomodations I need to keep a few of my activities going or do I give up and wait to see if I can get back to doing all the things I want in the way I’m accustomed?
It’s difficult, because I’ve seen too many people lose some joy and time with friends waiting to get better when they never did. With my limited energy and brainpower, I’m fighting to keep some things going, when the alternative would seem to be losing them totally and, perhaps, irrevocably.
So, what am I confessing?
I know my health condition is not a sin. Or what I’m doing to try to cope. Or not being able to power through these situations.
But I do feel guilty for letting people down and not being able to do what I want and not having my accustomed creative and critical thinking skills.
Maybe not for much longer.
Maybe permanently.
I just finished writing up some notes on a problem I had at physical therapy yesterday.
We were trying to tape my upper back/shoulders and inadvertently caused symptoms in my neck and made my tinnitus louder.
We immediately removed the tape but I’m still having some aftereffects today.
We are still looking for a diagnosis that explains all my medical weirdness but we aren’t there yet.
Meanwhile, I appreciate everyone’s graciousness and patience in waiting for my posts to appear. It’s been an intense few weeks, as you might have guessed in that I still haven’t done a post-election entry. I’ll get there eventually.
I’m trying to extend the grace and patience people are showing me to myself. Sometimes, I even manage it…
*****
Linda’s prompt for Stream of Consciousness Saturday this week is to use the word “just” in the first sentence. Join us! Find out more here: https://lindaghill.com/2024/11/22/the-friday-reminder-and-prompt-for-socs-nov-23-2024/
I had thought I’d write another post in my Vote for Democracy ’24 series on Wednesday.
Or Thursday.
Or today, but I’m not ready yet.
I’m usually decent at writing in close proximity to events, but not now. As it happens, we’ve had some major developments on the family health scene and most of my limited brainpower has been going there.
I’m grateful for the many people who have been writing compassionate, reflective, supportive pieces about the election results and the path forward. I appreciate the show of love and community.
I’ll join in when I’m able.
Peace,
JC
The Boiler House Poets Collective after our reading at The Bear & Bee
When I last posted, I had intended to post again sooner, but I found that the BHPC reading had taken a lot more out of me than I had thought, so I concentrated the energy I had on writing new poems and actually making it to workshop sessions.
We also had our planning meeting for next year, which will mark the tenth anniversary of the formation of the Boiler House Poets Collective after the original members met at the first workshop-in-residence by the Studios at MASS MoCA in conjunction with Jeffrey Levine of Tupelo Press. No details available now but lots of fun ideas under consideration!
I am so grateful to be a part of BHPC and am particularly thankful that we have become a true collective, with everyone pitching in to make it all work. I love our creative, supportive, and affirming atmosphere. Given my current health limitations, I would not have been able to participate this year without everyone else’s generosity in lending me a hand – sometimes literally when my balance was off! I also love how our three new members this year brought creative, joyful energy along with them and all plan to return next year.
I came home to a week of medical appointments and tests and an unfortunate uptick in symptoms. We are still working on a diagnosis with more tests and specialists forthcoming. We’ve ruled out a lot of possibilities but I’m anxious to arrive at a diagnosis so that we have a shot at figuring out an effective treatment plan.
Meanwhile, we have less than three weeks until Election Day here in the US. I hope to get out another Vote for Democracy ’24 post out soon.
Deadlines…
Later today, I’ll be travelling to North Adams, Massachusetts to begin the 2024 Boiler House Poets Collective workshop-in-residence at The Studios at MASS MoCA (Massachusetts Museum of Contemporary Arts).
It’s been lovely seeing the enthusiasm among my fellow poets as we’ve been doing our final preparations. Unfortunately, due to my current health complications, I’ve mostly been feeling apprehensive.
I’m used to spending long days and evenings during residency writing, editing, visiting the museum, workshopping, and eating/socializing with my poet-friends, but this year I have scaled my plans back significantly in deference to my current struggles with tinnitus, blurred vision, neck pain and stiffness, balance problems, fatigue, and brain fog. I’ve planned to do creative work in the mornings when I’m most likely to have mental clarity, spend most of the afternoon resting, and re-join the group for the evening.
This plan might work – or it might not. I need to be careful to listen to what my body is able to do that day and adjust because, if I push too hard, I risk the next day being a total loss.
I am not putting pressure on myself to generate new work if I don’t have the mojo to do so. There are plenty of poems that I could work on revisions. There’s also a lot of submission work I could do, which isn’t especially creative but does involve careful attention to detail.
It’s not that I haven’t had life complications at past residencies. I’ve done them during the final years of my parents’ lives when I was involved with their care and after their deaths when I was in the early phases of grief.
This situation feels different, though. While my brain was working differently when I was highly stressed or grieving, I still recognized what was happening in my head. The brain fog is more difficult. I need to divert part of my attention to processing what I see and hear and to how I move in order to keep my balance. My thoughts are slowed down and I easily lose my train of thought. I’m accustomed to mulling poems in my head before I sit down to write but it’s rare now that my brain has the power to generate a creative seed and allow it to germinate.
I think part of me is afraid that this state is my “new normal.” Without a diagnosis, treatment is elusive. We are working on that but it’s frustrating that I don’t have my accustomed level of mental acuity to bring to the process.
I’m also sad that I haven’t been able to workshop poems for months here with the Grapevine Poets and that will continue this week with BHPC. I miss seeing others’ work in progress and hearing the discussion about possible revisions. It’s a reciprocal relationship among the poets and very valuable for someone like me who came to poetry later in life without formal training in craft. I miss being able to do it, even though I always feel that I get more than I’m able to give in feedback to others.
As you can see from the graphic on this post, we will be doing a public reading on Wednesday, October 9 at 7 PM at the Bear & Bee Bookshop. I am determined to do that as well as I can. I am reading first when I’m most likely to have the needed energy. I chose poems and wrote out the welcome remarks I need to make so that I don’t babble or forget what I need to say. I haven’t practiced as much as I probably ought to have but will make sure to do at least a couple of run-throughs before Wednesady evening.
You may be asking why on earth I am still trying to do the residency in my compromised state. I am committed to the Boiler House Poets Collective and my current role as liaison to The Studios. Still, I wouldn’t be able to do this were it not for my trust in the BHPC members. Last year, we planned for members to take on different aspects of organizing the residency and everyone has stepped up to do their part and more. I am able to carpool with my local BHPC members so I don’t have to drive. I know that any of them will be willing to give me a hand, perhaps literally if I need it to help with my balance. I absolutely could not do this without their support and I appreciate it.
I’ll try to get some posts in from the residency to let you know how things are going. Prose is generally easier for me to write than poetry so maybe that will work out. Maybe not.
I’ll try to listen to my body.
Wish me luck.
“Tick-tock. Time’s a-wasting.”
I remember that saying from when I was young, although I haven’t heard it for a long time now.
But, yeah, time is rushing by with so much pressure these days.
My inbox is filled with urgent messages about the upcoming election, the climate crisis, closing submission calls for poetry and manuscripts, important meetings and webinars, pleas for donations. (I probably should have said inboxes, as I have several email addresses that I have to maintain.)
And I have very limited energy to respond.
While we continue to rule out reasons for my health issues, we haven’t been able to track down the underlying cause. We are addressing the symptoms that we can but the most upsetting ones, the fatigue and brain fog, aren’t able to be improved at this point. I’m working around them as best I can by listening to my body and trying to be gentle with myself.
But, tick-tock, time is rushing by with all its demands and things that can’t/won’t wait.
And I’m only able to do a sliver of what I wish I could.
I do try to remind myself that I’m only a very, very, very tiny entity in this world and in all these efforts and that others are taking up the slack. It won’t be my fault if the election goes to the Republicans and they crash the country and trash the climate (except that I know I share the guilt of social sin, but I can’t stream-of-consciousness an explanation of Catholic social justice doctrine and our responsibilities to humanity and the world. And you’re welcome that I’m not trying to.)
The more personal side of dealing with my health right now is that I have a ton of work to do with my poetry and it is taking a loooong time to do it, if I can do it at all. There is also the sinking feeling that it isn’t as good as it could/should be. There is also the fear that I won’t be able to recover fully from this and will face yet another instance in my life where I set aside my own work to deal with other pressing concerns and then lost the ability to go back to it. I am content with those past choices I made and would not change them, but this feels different because it is my own health that is the obstacle this time.
The biggest regret, though, is that another family member is dealing with a bigger health issue and I’m not as able to help as I would like to be.
Tick-tock. Time’s a-wasting…
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “tack/tech/tick/tock/tuck.” Join us! Find out more here: https://lindaghill.com/2024/09/06/the-friday-reminder-and-prompt-for-socs-sept-7-2024/
(COVID Photo by Martin Sanchez on Unsplash)
It’s become more difficult to keep track of COVID-19 cases here in the United States, as less data is being collected and shared with the public.
We do know that this summer’s wave has been substantial, mostly due to the Omicron subvariants known as FLiRT. While death rates have been lower than in previous waves, they have still been ranging in the 400s-700s per week this summer, which is upsetting. These figures may also be lower than the actual count because reporting is less robust than it was under the public health emergency protocols.
Last week, the US Food and Drug Administration approved the Pfizer and Moderna vaccines based on the KP.2 variant, one of the FLiRT family. Doses are already available from some pharmacies and are recommended for everyone ages 6 months and older. While some people will choose to wait until later in the fall to have the strongest protection possible going into the expected winter wave, I will be getting mine in mid-September so that my immunity will be strong when I go to North Adams for the annual Boiler House Poets Collective residency at MASS MoCA (Massachusetts Museum of Contemporary Arts). It looks as though the vaccine will be a good match for the strains that will likely be dominant in the coming months.
The FDA is also expected to approve the Novavax vaccine in the coming weeks. It is a more traditional protein-based vaccine rather than an mRNA one. Some people prefer it because it can cause fewer side effects.
Many people are choosing to ignore any news about COVID and vaccines but it is still a serious problem, here in the US and around the world. This is a reminder that some people are still getting very sick and dying from the SARS-CoV-2 virus. Updated vaccines are known to reduce the risk of hospitalization and death, so please get one if they are available to you. (Contact your health care provider for any special recommendations that may apply.)
Other measures can also help reduce your chances of getting COVID. Wearing a high quality mask, especially in crowded, indoor areas, dramatically decreases the rate of infection. Increasing indoor ventilation and air filtration and holding events outdoors are helpful in preventing the spread of COVID and other viruses. If you are sick, stay home and take precautions against spreading your illness to others in your household. Get adequate rest and nutrition to keep your immune system strong.
COVID-19 has not settled into a pattern like we see with flu and is still much more serious in terms of hospitalizations and deaths. It also impacts more systems in the body and can cause symptoms over a longer period of time, such as we see in cases of long COVID. Some people are willing to risk their own health but please remember that you are also putting your family and vulnerable community members at risk if you spread the illness to them.
Wishing everyone good health in the coming months.
Joanne Corey 