Two or three weeks ago, I was really wanting to share a big and encouraging update full of information about my new, official epilepsy update!

Yeah, that’s not going to happen. Still no diagnosis for this shaky lady.

It’s not all bad news, and there is progress, but …sigh… I felt pretty low after my follow-up appointment.

So, what do I know? Basically, not much.

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​The ambulatory EEG didn’t pick up any epileptic activity while I was experiencing symptoms. This is very common during focal aware seizures, which is what I am most likely having. They can affect only a tiny part of the brain and that can be hard to catch. Additionally, my symptoms experienced during the study were fairly mild; I’ve had much stronger.

The next step is additional medication. It’s being added incrementally and should reduce seizure symptoms. So, if it does – yay! – focal aware seizures it is!!! If not, it looks like I may have developed some kind of headache disorder. Evidently there is a significant overlap on the Venn diagram comparing the two.  Migraines, or the like, are not a desired diagnosis as that just would be another thing to have to deal with. No thank you.
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Looking into a comparison of both, I am confident enough I’m experiencing focal aware seizures to tell people who ask that is what’s going on. It not being official is frustrating, but I understand why the neurologist can’t give me an official diagnosis yet. The data is too qualitative. They need to make sure they’ve verified everything. And I respect that.

Now that I’ve reached the end, what are focal aware seizures exactly? They are a form of partial seizure that affects, as the name implies, only part of the brain. The person also maintains a certain amount of awareness. The auras many people experience before a large seizure are a focal aware seizure that eventually expand to affect the whole brain. However, they don’t always do this.

The symptoms of a focal aware seizure vary with the person and with it’s focal point within the brain. Very often, it’s a strong feeling of déjà vu or jamais vu. I have this. It’s weird, disorienting and scary. If, as a child, you ever had a really high fever, and, that night, you had a hallucinating nightnmare about Mary Poppins , that's the kind of disorienting and scary I'm talking about.

Sometimes words get really hard. I can’t form them or find them. Picture a brain fart with constipation. Words can also suddenly change their meaning and spelling, so my sentences no longer make sense. Other symptoms include strange acts of clumsiness, absentmindedness, or feelings of numb tingles. 

In summary, brains are weird. It’s no wonder that it takes time to figure out what’s going on.

Years ago, in the early days of Facebook, I posted every day. At the time, it gave the prompt, “[Name] is…” and you would complete the sentence with whatever it is you be ising. I approached the prompt as a sort of word game and rather enjoyed the challenge of making my thoughts grammatically correct.

Then one day, I went on a hike along the bluffs of the Missouri River. I noticed that I had begun narrating my experience as Facebook updates. “Dorothy is hoping no one saw her trip on that rock,” or “Dorothy is looking down on the birds flying below.” At first I was excited to have so many post ideas, but as the day progressed, I became uncomfortable. Why couldn’t I simply be in the moment and enjoy it for myself?

After that, I stopped posting every day. I would occasionally try to be more intentional about posting for the community of it all, but I really don’t like how it takes over my thoughts. I had a similar but less intense experience with Instagram (which, to be honest, is more my style and I regret not joining earlier), but since it’s switched to emphasizing Reels, not posting pictures is easy.

I say all this, while at the same time, I am a person who really enjoys sharing what I notice with other people. I do this on the small scale with personal messages, and I would like to send more. I also see the appeal of making short videos and posts. I have ideas for things to write and create all of the time. But…I don’t like the social media atmosphere. I don’t want to be thinking about how people will respond before I even get started. It’s funny, in many ways, I’m unconcerned about what people think of me. And yet…
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In short, I’m someone who avoids attention, but gets discouraged by lack of acknowledgement. Add in wanting to avoid having posts and sharing take over my mental life, it makes sense that I’m not an active poster. 

I’ve been thinking about this a lot lately because I know I could benefit from the discipling of sharing regularly. On a personal level, I’ve been in a dysregulated tumult since mid-December (see previous post). Writing about my progress and setbacks would likely help me gain more stability. It might help others, too, but I’m not in a place where that should be my focus.

On a more universal level, there’s a lot of concerning and confusing things taking place right now. I’m in a unique position of having interacted with many of the conflicting groups. I think a lot about simply telling stories about the things I’ve learned and experienced. This feels heavier and more important than writing about my health. I feel a tension between wanting to do justice to the stories shared while being 100% okay if no one ever hears what I have to say.

To summarize, I am simultaneously holding the understanding that this will benefit me personally, concerns about presentation to an audience, apathy about an audience reaction, and feelings of pointlessness if no one sees it.
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Rather ironic to post all this on a blog that nobody reads. However, a routine posting schedule here is also the best place to start. So future person, how did I do?

Christmas was yesterday, and the day was lovely. Quiet and relaxed. December has been a challenging month, with several moments of loss, sadness, and disappointment. At the same time, right now, today, I feel like the optimism I described in my previous entry maybe wasn’t such a waste of energy after all. Nothing has actually happened yet, no visible fruit, but all the same, things free more on track than they have in ages.

First, at Cage Free Voices, concrete deals are solidifying. It’s still too early to announce all the details, but after a rather tumultuous year, there are strong indications of some steadiness. We have contracts with people who are willing and able to follow through with their promises. We will be busy, very busy, but will finally, hopefully, have the space to work on the projects we most want to pursue. As with many startups, we’ve been having to pour most of our time into all the things required for survival instead of the things we enjoy. There are still risks, nothing is ever guaranteed, but there is a rightness to the way things seem to be coming together that is very reassuring.

Second, two of my favorite people appear to be coming out of dark seasons. One experienced a huge blow last spring that completely undermined their confidence and led them to retreat from the world. In the past several weeks, they’ve started reentering life and interacting with others. It’s wonderful. The other had also withdrawn but for reasons related to medication that left them numb. Recently, a few changes were made that should help bring vitality back. It’s early days, too soon to know the true outcome, but signs are positive. I’m excited. I want this change for them. I’m also selfishly excited for myself. I have missed these guys.

Thirdly, lastly, and most weirdly, is my health. Since the episode back in September, I’ve been getting worse, and have an ambulatory EEG scheduled for the end of January. An AEEG is a 72-hour EEG you have at home, living your life. It’s been stressful because the mini events have been fairly predictable, but there weren’t available dates during the most likely windows. Then, a week ago today, I had full on seizure out of nowhere, going completely against the pattern of predictability. The episode is a story in and of itself. All I will say now is that I was about as safe as is possible, and that my brother was again the hero of the moment. The important thing for this entry is that all the worries about the timing of the test and whether or not I’ve been overreacting to feeling off have dissipated. I can’t control this thing, and it will be okay. Yes, there are some huge questions and concerns, but steps are already in place for me to get the right help. This is complicated enough without me adding extra problems. It will be okay.

So, yeah, I’m feeling optimistic. Judging from the addled state of my brain, this may be foolish, but I’ll take it!

This has been my unintentional theme for 2024. Lots of things to be optimistic about, but then…I don’t even know.

I really haven’t been feeling well since the seizure event that happened back in September. A couple other smaller ones have happened since then, and my doctor has scheduled a couple more tests. I feel optimistic about them because the style of test makes it more likely to capture what’s actually happening in my brain. At the same time, it scares me that I keep feeling worse. Some days, the symptoms remind me of how I felt during the first years after this started.

I want to go running and not worry about it.
I don’t want to have to keep starting over.

I am very, very fortunate and have an amazing support group, and this is exhausting. I’m tired of thinking about it, and I’m tired of feeling like I’m being lazy, when that’s often (but not always) not the case.
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Blerg. Time to talk about something else. Being ignored by crows is more fun.
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 Think about how strange it is to recall a dream. You have the ability to remember specific events and feeling, but they don’t quite connect. There are gaps in the logic. Now imagine you had access to someone who saw everything that happened in your dream and could fill in all the missing pieces.

That is what happened to me last week.

My younger brother and I were both climbing the walls a little, so this past Wednesday, I convinced him to go on a hike with me. It was a nice outing. We grabbed lunch beforehand and the hike itself was short and pleasant. Leaving the trail, the route home goes through downtown Hot Springs. While driving past all the tourist shops and bathhouses, I started feeling really weird and nauseated. I pulled over, and crouched behind the car. My brother turn on the hazard lights because we were in a no parking zone. I remember not wanting to get sick on my shoes or in my muffler.

After that, my recollections get really vague. For example, I remember cheerfully telling the stranger who offered me water, “No, thank you!” The stranger was my brother.

I also remember wanting my brother to look at the pattern in the pavement (there was a face in the white paint). He reports that I became fixated on all kinds of patterns, particularly the lights in the jewelry store and the dirt on my car window. I even wanted paper towels to clean it off. I don’t remember any of this.

I also don’t remember going into my trunk to get my sodium tablets out of my box of useful things. My brother says I first grabbed a travel bottle of contact lens solution and insisted it was sodium. He was smart enough to know that wasn’t correct and found the right bottle. I don’t remember getting into the passenger seat and fastening my own seat belt either. But I did.

My brother says the whole thing outside the car lasted maybe 10 minutes. I was cheerful and talking, but was clearly “circling Mars” until the drive home, when I fell asleep. I didn’t start regaining awareness until we arrived in Malvern. I slept for at least another hour once home. Since then, I have been extra tired and fuzzy, but otherwise fine. I’ve actually been a bit more productive.

So, what happened?

I think it was a TLE seizure, or a focal seizure that only affects the temporal lobe. Reading the description, and it sounds like what I experienced. My brother agrees that it fits what he saw on his end. My chattiness was a little strange, but not unheard of. There’s no way to officially confirm it without an EEG and/or having more, and nobody wants that. It most likely is because I’ve been having trouble with my medication. The kind I’m on has a side effect of lowering sodium. Late last spring, it was confirmed mine had become chronically low, so my dosage was reduced. Evidently, that solved one problem while creating another. I have some blood work scheduled for today. I’m 99.9% positive my medication will be changed.

Meanwhile, all is well. Honestly, the event itself is borderline hilarious. My brother was definitely concerned and handled it brilliantly, yes/and-ing me to safety. However, we both agree, all of the humor quickly disappears when thinking about what might’ve happened if he wasn’t there…

Moral of the Episode: Scary things become fun when my brother is around!

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Tuesday, June 11
I set the dish out before 8am. Around 10:30, I came out to check, and the crows were in that area. Wanting to give them space, I went around the long way. As I came around the house, they started cawing and flying around. I grabbed the dish (it was empty), and they were active the whole time.

Minutes later, I went to my brother’s apartment, and they were still noisily flying all over. I came back out with his dog, and they quieted down some, but still visible. I noticed that the peanuts I’d left on the bench yesterday were uneaten, so I decided to set them out in the dish.

Meanwhile, Sunday I reached out to my friend, Susie. She has LOADS of experience with birds, including crows, and has mad skills when it comes to animal behaviors. Yesterday, she got back to me. She confirmed my idea of using the dish. With any wild animal, especially ones as devious as crows (her words), it’s best to keep association with humans at a minimum. She had several other helpful tips for engaging with the birds while keeping their shenanigans in check.

The crows ate the second set of peanuts, too. Since Susie advised that restricting the amount of treats will prevent the size of the group, currently a negligent homicide, to growing into a full-on murder, this will be the last time I give them a bonus treat.


Wednesday, June 12
Made breakfast BEFORE setting dish out, so that I could keep watch from the screened in porch while eating. I had the dish out earlier than previous days (730 instead of 830). They were cawing when set it down.

I saw now crows while watching. I eventually left because the sun became too much. 30-45 minutes later, I went to check. There were several narrow paths leading to and from the now empty dish. They began cawing when the bowl was retrieved and were generally active overall.


Thursday, June 13 
Had the dish out by 830, again after prepping breakfast. I saw and heard a few while talking to my mom, who was weeding in a bed maybe 20m from the dish. Although walking around in the vicinity, no crows were seen approaching the dish. It was still untouched after leaving for a few hours before removing it at 12:30. Mom reports seeing crows in that area when going back out to the garden, but left.

That evening, saw two chilling in the bird bath.


Friday, June 14
AM: No crows sighted, no peanuts taken.
Saw two in a different part of the yard that evening. Took dish out, scared them off.


Saturday, June 15
First visual confirmation of a crow taking the peanuts!!!

Woke to a text from my brother reporting that he heard crows at around 6:30am. I set dish out by 730, placing it within clear view of the living room window, so I could watch from inside the house. After 15-20 minutes, spotted one crow eating worms and things in the grass near the bowl. It showed curiosity about the dish, eventually hoping on the rim, taking a single peanut, and eating it! After the one, it went back to picking critters from the yard.

I was unable to keep watching, but when I went out an hour later, the dish was empty. The shell from the peanut I’d seen eaten was where the crow had left it.

During the retrieval, two crows started talking to each other as I got closer. The first to start cawing was in a tree in front of me. The one replying was behind me and to the right, in the largest oak tree in the front yard. They were 75-100m apart. They kept conversing the whole time, and I’m fairly sure I heard a third one in a third tree join in as well.


Sunday, June 16
All but one peanut was taken after ~2 hours. For the first time, all shells were next to dish. Was this from the one crow I saw eating the day before?


Monday, June 17
The first cloudy morning since beginning this experiment. I checked the dish after 60-90 minutes and no peanuts were taken. Heard a few caws at that time, so left it. All 6 peanuts were still there another hour later, when the dish was removed due to rain.

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I read a few stories about people striking up a relationship with the crows near their home, and I rather like the idea. My parents’ have a large yard. Crows are present. I’m a nature nerd with a love of projects. Sounds like great idea to pursue!

I liked it mostly as a notion, a potential possibility, until I mentioned it to me not-so-wee nephew in the card I sent for his 9th birthday. He was all on board, and passed along the message that he will feed them when they come visit this summer. They are coming the only week I am out of town, and as someone who loves being an aunt but is currently unable to see any niblings, this timing is grating. No way am I going to pass up this chance to bond with a kid I adore.

When I originally thought to do this, I wanted to do it in a way that didn’t make the crows too territorial about the house. I’d heard they can become rather possessive, chasing away guests and the like. The obvious solution was to center the feeding near the pond. Not only is it a reasonable distance from the house, the crows might even chase off the Canada geese that regularly try to make themselves comfortable.

In order to keep other critters away, the best course of action appeared to be to start feeding them up near the house, where we see them most often. Over time, I could move slowly down the hill to the permanent snack-time location.

​I talked to my family, and they’re all on board. I got some raw, shelled peanuts and cayenne pepper to deter greedy mammals. Now to initiate contact!

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June 1 – Despite being in the yard quite often, this was the first evening we’d seen any for a while. I decided that the next morning would the day to begin.


June 2 – Put 6 peanuts in a jar, gave them a quick spritz of water, a dash of cayenne, and gave them a shake. I placed them on the ground near the old play fort. No crows were in sight, but they often hang in that area. Checking later, nothing had touched them aside for a few ants.

I mentioned to my fabulous brother that maybe I should put the peanuts on aluminum foil since crows do like shiny things. He suggested I use his dog’s shiny chrome water bowl he’d just replaced. That seemed like an even better idea, especially with the plan to move where they get the treats. It also addressed some worries I had about my not-so-wee nephew taking over. If the crows learn to love the bowl, they’ll hopefully not terrorize the person bringing it outside.

I also realized that it would be better to let the crows see me bring out the peanuts, so they know that they are for them.


June 3-7 – No crows were seen, and the peanuts near the play fort remained virtually untouched.


June 8 – Two crows seen in the early afternoon! Not wanting to waste this opportunity, I put 6 peanuts in the dish, skipping the cayenne. I walked out towards them. They flew off once I got within 15m, and I set the dish down close to where they’d been saying, “These are few you!” and walked away. I didn’t see any crows or anything else approach the dish.

I left for a few hours. When I returned home, I noticed a crow near the corner of the house. As I came closer, I saw it see me before it flew off, cawing. I went to check the dish and all the peanuts we gone without a trace! I couldn’t be 100% sure they were taken by the crows, but I felt encouraged.


June 9 – Not sure if I should wait until they see me or if consistent snack time was better, I set 6 more peanuts – with cayenne this time – out at around the same point in the afternoon as the previous day. No crows were seen, and when I retrieved the dish in the evening, only one peanut was taken.

This led to two thoughts.

Thought 1: Since only one peanut was taken, IF it was a squirrel or other mammal who took the previous day’s peanuts, then the cayenne worked to deter them today.

Thought 2: Especially since I’m still trying to initiate contact, setting the dish out when I wake up may be a better option since the crows are more active in the morning and evening.


June 10 – Set dish of 6 cayenne-seasoned peanuts further out into the yard around 8am. It was completely empty before 10am. Yay! No idea what took them.

Around 11 am, saw three crows. Quickly grabbed 5 peanuts (I miscounted) and walked towards them. Like before, they flew away before I got close. I placed it near, but not quite in, the area they’d been hanging. I got my computer and set myself on the porch to watch while I worked.

After a few minutes, they returned. One looked curious and slowly approached the dish. However, one it got with a meter, a mockingbird dove at it. The crow retreated. The trio nibbled their way across the yard, further from the dish. Wanting to communicate that the peanuts are for them, I moved them closer. Again they flew away.

I watched them for a while, as they made their way across the yard, increasing their distance from my offering. Looking for advice on the internet, I found a Reddit post from someone who also lives in rural Arkansas. Like me, there are crows around, but no clear roosting place. The general consensus was, as you’re casually walking your dog and living your life, toss a few peanuts their direction. They’ll catch on.

So, in one last effort for the day, I retrieved the peanuts and took them over to them. They took flight almost as soon as I came into sight. I gently tossed the peanuts as I watched their retreating backs fly across the pond. A few hours later, the peanuts were still in grass. Since I really don’t want any other critters to claim the treats before the crows, I picked them up.


Conclusion: The crows recognize me and do not trust me.

Blerg.

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