“Always the hours…”

Posted byJennifer PatinoPosted inpersonalTags:, , , , , , , , , , , , , , , , ,




I’m floating on whirlwinds these days. I’m the cottonwood pollens drifting along the breeze, northern Michigan’s “springtime snow”. I haven’t been in erratic, rainy weather in quite some time so I’m being reminded how it affects my epilepsy. It’s not been easy, but I am managing. The anxiety that accompanies having so many seizures again is the worst thing. I no longer take my daily solo walks because I’m very afraid of having a seizure in public on my own. I was doing so well. I had a sense of freedom back & now I struggle to take those first steps outside unless my husband is with me. I don’t like it. I will work on it. Right now though, I’m just trying to work on what I need to work on writing-wise, even on the days my brain is only half coherent & I’m stuck in bed. There are good days, believe me. More good than bad. I’m just having a rough time.

I’ve been working on poetry every chance I get & hope to enter some contests this summer. Tonight, health & weather permitting, I hope to attend the Poets Meet Musicians gathering again. Jackson & I have another busy week ahead. Thursday night we’re planning on going Downtown so he can attend Art Night. Friday we’re going to ride our bikes there to go see a local musician play & have a nice write-up for The Jam Files. Then Saturday I’m going to a writing workshop at the library. It feels really good to be working so hard on writing projects & to be reading so much. I’m going through many different books at a time & I also have a couple more that came in for me to pick up at the library. I know it sounds overwhelming, but sometimes I’ll start reading something & my brain says “nope, I’m not grasping this one right now”, so I can pick up another one that is more its speed. I’m reading David Foster Wallace’s “Oblivion”, Thomas Pynchon’s “The Crying of Lot 49”, some Thom Gunn poetry, a biography of DFW & still using Patti Smith’s “A Book of Days” as a kind of morning “devotional” to possibly prompt some writing. I’m scouring Wallace’s work for “tech prophecies”. I’m not going to explain this. It’s showing up in my poetry so just wait & hopefully I’ll have something worth sharing about it soon. I penned a silly little piece last night I’m not sure what I’ll do with, but it made me giggle.

I’m watching some good movies too. Old favorites. “The Hours” in particular is one I’ve been thinking about a lot. Every time I watch it, it inspires a poem, & I hope to re-read the book again soon as well. I also keep thinking about the movie “Twister” & how there’s going to be a sequel soon. I’m listening to so much music. I find it helpful especially on days when my brain can’t handle much else. Joy Division (Ian Curtis & the whole epilepsy thing obviously speaks to me) on repeat & some indie stuff. Local music on the Sonic Coast app, & new vinyl records we’ve been collecting. I won Duke by Genesis for the Bring Your Own Vinyl Night at The Coin Slot last week. It’s a brilliant record & when I shared about it on Facebook there was much conversation surrounding it. I love people sharing memories about music & gushing about bands they like.

I’ve been battling again, but I’m okay. A rough day here & there (even a rough week) isn’t nearly as bad as a decade in bed. I’m experimenting with CBD oil levels to try to have some seizure control & so far I’ve been able to at least ease the postictal state. The real test will be later today with an approaching thunderstorm in the forecast.

When I do go outside, I’m dodging mosquitos & trying not to itch. My allergies could be worse though, I can tell you that. They have been. I love that it’s May & I can still wear a light coat some days. I also love that I spent a little time in the sun over the weekend & did not get a rash. I will have to test it with prolonged exposure but hopefully it won’t be as bad as last summer. I had some nerve pain flare up on me again & I noticed a rash on my face which might be another symptom pointing toward an autoimmune disease. I must say I’m tired of doctors asking me if I have it because for years I’ve been asking them if I do & when anomalies in blood work do show up, they disappear just as quickly. “Maybe you do”, doctors have said. “And does it really matter if you’re already disabled?” Kind of appalling, but honestly, no I suppose it doesn’t matter. I’m not interested in any of the treatments. I prefer what I’m doing already to manage everything. The less doctors for me, the better, believe me. I’m not interested in what little they have to offer me at this point. 

I’m so thankful for friends & family & for meeting some new people around town. I’m always so shy & awkward but once I get to know people I feel very happy to see them. It’s all been so very, very good for me being up here & every time my husband & I find a new place to gaze over the water or to watch birds from we look at each other & say “I can’t believe we live here!” I’m loving riding my bike again & I’m very excited for when it really gets warm so I can go swim in Lake Michigan again. I need to.

I believe it’ll be one month ‘til summer, & soon I’ll be turning 41. A lot is happening for me or at least I’m making attempts to make things happen so I will be sure to update accordingly. Peace, friends. Until next time.

Photo by Jackson Patino: Me at Hannah Park

Published by Jennifer Patino

Poet in Michigan.

36 thoughts on ““Always the hours…””

  3. Here’s hoping all your days are good ones. Have you seen “Control”, Anton Corbin’s film about Joy Division/Ian Curtis? I too am fascinated with that story and band. I guess I should just watch it, but movies are hard for me to get through these days. I much prefer watching concert movies. I did like The Hours and Virginia Woolf is one of my favorite authors, although Mrs. Dalloway is not my favorite work of hers-that would be “To the Lighthouse.” I am angry that her reputation has taken a hit, as so many have in our current culture. I feel that no one is inherently good or bad, rather everyone is shaped by the world around them and when we apply current mores to past lives we are missing some of the point. Thanks for sharing, Jennifer!

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    1. Thank you for reading!

      “To the Lighthouse” is my favorite of hers too! I rewatched “Control” a couple of weeks ago. I love it. I think it was a good decision to film it in black & white. I also watched “24 Hour Party People” & that was very entertaining.

      I agree. I don’t understand the “cancelling” business or the insistence on viewing past art through a “2020s lens”. Certainly times have changed & the dead can hardly defend themselves, nor should they when it comes to art in my opinion. To try to paint over any “bad” thing to hide it seems counterproductive as well. I don’t like playing judge in any circumstance & I’m really not for the idea of “morally policing” anything or anyone. I’ll have to look up what’s being said about Virginia Woolf because I am curious. I haven’t come across anything like that so at the risk of making myself angry, I’ll go take a look. 🙂

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  4. Great to hear the move from Nevada has turned out to be such a positive one, and on many levels at that. It is always a comfort to enjoy one’s surroundings. A great foundation for a great life.🙂

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  5. I wish you peace, strength, healing, and good luck with the following:

    “I’m experimenting with CBD oil levels to try to have some seizure control & so far I’ve been able to at least ease the postictal state. The real test will be later today with an approaching thunderstorm in the forecast.”

    I’m also sending big hugs your way, Jennifer! 🙏🏾💙

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  7. I appreciate the update, Jennifer. You know your body better than any doctor ever could. I avoid western medicine whenever possible. Happy you’ve been getting out and about and have immersed yourself in the arts. Such a cool pic of you inside the sculpture.

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    1. Thank you. I have too many issues with side effects of everything I’ve ever taken so I prefer my herbs & medicines. If “quality of life” is something I can obtain, I prefer the natural way. I’m doing better than I have in years despite the weather’s effect on me so I’m very happy.

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      2. I don’t know, I’ve never tried it. It’s the least of my worries right now though. I’m thankful the allergies are affecting me very mildly. The worst I ever experienced was when I lived in Florida. It’s worth trying though so thank you.

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  10. The ‘springtime snow’ here is so thick I have a layer of it on my desk where I’m writing by the window… I’m glad that you’re taking this adjustment at a thoughtful pace, and that it’s giving you at least a little space for that. Even a short respite is golden. By the way I think of you every time I pour myself some Couch Lock tea, which may not always work as well as, say, a Delta-9 gummy, but it makes me feel less helpless, and is much kinder to my brain. The right dosage/form of CBD is out there, I hope, and I wish you luck finding it! I’m still on that quest myself since THC made my cognitive problems worse. More on that in an email soon; in the meantime, you’re in my thoughts! 💜

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  11. I’m so glad to hear that you’re having more good than bad days, Jennifer. Praying you’ll reach a point of stability and healing, but until then it seems to me you’re keeping yourself cheerfully occupied. Thanks for sharing your journey, Jennifer, inspiring and courageous. Keep pressing on. 🙏❤️💐

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  12. 🕯️🕯️🕯️ I’ve been reading a lot about how the brain tricks us, especially during stressful times and fear…. It’s about retraining the brain, and it has helped me bunches. If interested, I’ll share what I’m reading.

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  14. Here’s hoping you feel better and June is a much better month for you. I subscribed to The Jam Files. I’m interested in local bands. I listen to a few in my region, but here it’s mostly metal (or it used to be). I prefer lighter indie or rock or pop. A lot of bands here tend to imitate Western bands and end up sounding weird lol. Having said that, there are a few good songs I’m sure. The rash on the face bit sounds a little scary. I hope it’s not a criss cross one because that’s usually indicative of Lupus. I don’t understand how the doctors can be so callous. Why not provide someone with a holistic treatment instead of just banishing them because they’re already suffering? It’s messed up. I read essays by David Foster Wallace recently. Into Anne Rice now with Interview with a vampire becoming a series and all. Stay strong. And I understand not wanting too many doctors. I have a few conditions and running from doctor to doctor is never fun.

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    1. Thanks, Nitin! They tested me again for Lupus & it was negative. I had indications of it show up a couple times on tests in the past. I have no idea really. I’m photosensitive & get that polymorphous light eruption rash but never on my face & I hadn’t been in the sun. By the time I get to a doctor it clears up so I give up honestly. No sense in chasing a diagnosis when I have so much going on already. Added a bum tear duct to my list of chronic ailments. I have to massage it four times a day now because it doesn’t drain properly on its own. Thankfully though, I make plenty of tears because that would be more of a pain to deal with. Spring has been hell on my allergies but I’ve still had a pretty good month. My birthday was Saturday & I had a great day. I’m just hanging in here, getting things done & having fun when I’m able. I prefer the natural & holistic medicines myself. They actually work for me better. Do you like the Interview With the Vampire series? I love it! It’s so good!

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      1. I’m sorry Spring has been hell. Happy birthday btw! I know I’m late but here’s wishing being 41 changes a lot of things for you, and you feel much better, more inspired and happier. I’m 5 years younger than you. I turned 36 in April. Feel old though lol. Lupus is a dreadful disease because it affects the internal organs eventually, and I’m glad you tested negative. I can only imagine how terrible having a tear duct that doesn’t function properly must be like. Such things really disturb you. I have a toothache because of cavities and I’m dreading seeing the dentist tomorrow. My teeth are weak because of neglect and smoking and I don’t want root canals and stitching and stuff. But a tear duct is way worse because we rely on our eyes so much, being writers. The only thing we can do when life gets hard is to move forward and enjoy it whenever we can, although that’s so much easier said than done. I’m glad you’re having fun when you’re able to. I started Interview with the Vampire three days ago, and then shifted to the book. I think I’ll read the book and watch the series at the same time. Both are amazing! Another series I liked was Under the bridge. A little dark but very absorbing. It’s very realistic though.

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      2. I really liked Under the Bridge too! I remember reading about that case before.

        I hope you feel better from your ailments too. Teeth are very important too & can affect other things. (I heard that anyway.)

        I agree. Moving forward seems the best option, but if I have to sit still & rest for a bit, I’ve learned to be okay with that too. Thank you for the birthday wishes. Happy belated to you.

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