Back in March I talked a bit about my intention to complete a 50k. Well, that's officially happening the first Saturday in November at the Screaming Monkey 100 - 50k!

Yayyyy!!!!

The race is a little south of Shreveport and called the Screaming Monkey because the trails go past a chimpanzee sanctuary. Yes, chimps are apes, not monkeys, but my inner nerd get over that. Also, in past years, the route used to go through the grounds of an abandoned prison. I am sorry that is no longer the case. Ghosts of former inmates would be a good motivator...

My training plan is more-or-less what I outlined in that previous post, just a little more nailed down. One really helpful surprise was in an email from the race director. He recommended a trail system near where I live with a similar terrain as the route. I'd never heard of it, and it's not on Gaia GPS (my faithful trail app), so this was a boon. I checked it out with my brother earlier this week. I was thrilled to see that it's rugged enough to be interesting, but not nearly as steep, crumbly, or ankle-breaking as many of the trails in the Ouachitas and Ozarks. 

Yesterday I went on a 4.5 hour, 14.5 mile hike around Hot Springs National Park. I ran a bit, but most tried to keep up a fast walk. I had a couple moments of reflux and fuzziness, but recovered quick enough. The low point was when I thought I was almost done, only to find my way blocked and having to backtrack. Blerg. 

Aside from a bit of stiffness, I feel good today. This is exciting! I think I'm actually going to be able to do this!!

I spent June and July coordinating a theatre camp as part of my job with Cage Free Voices. Despite being a small camp, it was a really big deal.

To begin with, it was the first real leadership responsibility that my boss, Bathsheba, entrusted me with. The company is her baby, her vision. She's done all the foundational work. It was an honor to carry on that torch.

Secondly, this was the first project I've coordinated since leaving teaching. Yes, I participated in other projects, but not in this capacity, and not one with quite so many moving pieces. It's the kind of work I want to do and I am good at it. I'm ready to do more.

Since beginning May, this experience included a lot of firsts. First time conducting job interviews and hiring an instructor. First time talking logistics with an orginazation as renowned as the Kennedy Center. First time reaching out to friends I've haven't spoken to in decades in order to ask for help.  First time overseeing a final workshop that featured locals and internationals, in-person and virtual. First time taking a business trip.

I learned a lot.

The camp almost didn't happen. It was set to start July 11. On July 8, we had no campers. In all our recruiting conversations, we were met with a high degree of interest, and very low commitment. We understood. People are tired this summer and need to slow down. At the same time, I really wanted honor this opportunity.

Fortunately, after many pivots and creative adjustments, things came together. Our instructor, Amna, was amazingly understanding throughout all the ups, downs, and resulting changes. Unfailingly, Bathsheba would be struck with inspiration in the same moment that my ideas had run out. The Kennedy Center remained supportive; it seems everyone is experiencing a similar lethargy. 

The final preview looked nothing like the orginal vision, but quite a few people, both kids and adults, stretched themselves in unexpected ways. It was beautiful.
​
My greatest takeaway was seeing the good things that can happen when you are able to trust the people around you. When you can let go and make plans that allow room for life. Watching Amna apply her positive, theater-trained, "yes, and" attitude to our practical problems was everything I ever wanted from a colleague. I've worked in several toxic, rush-rush settings and it was encouraging to see a different environment. It felt good to know I played a role in creating it. 
​


​

STRE-TCH!​
Several years ago I joined some friends at a hotel for a conference. The first morning, while stretching on the floor, I muttered "Boy, I'm stiff." Overhearing me, one of my friends launched into a long explanation of how stretching works and that bodies are stiffer in the morning. There was no recognition of the fact I wasn't seeking advice, nor that I've been stretching regularly since age twelve. I was just surprised by an unexpected kink in my back caused by my seven hour drive the day before. A minor incident, but DAMN.

Pubescent Overload
One of the many things I did not anticipate when I became I middle school teacher was how often parents would explain puberty to my colleagues and myself during meetings. Eventually I realized that most parents were needing to say it out loud for themselves, as a way to anchor their emotions as they dealt with the changes in their child. But a small handful really seemed to believe that we were unacquainted with the trials and tribulations of adolescence and were in need of a detailed lesson. Most memorable was the time a mother tried to excuse her daughter's habit of stirring up drama by loudly declaring that her daughter, "has her period! She has hair on her va-GI-na!" My colleague, an older woman who is one of the most classy and sophisticated people I've ever known, had an expression on her face like no other. Priceless.

​

Spring of 2019, I overheard three women talking at an adjacent table. One was being rather bossy and talking over a lady who trying to tell a story about a problem at work. In an effort to curb her onslaught, the third women said, "Slow down, [Bossy]! You are totally mansplaining right now!" Bossy laughed it off, saying that wasn't possible because she is not a man. She then continued to spew her unneeded advice.

Listening to this lady's oblivious rudeness, led me think, not for the first time, that there needs to be broader term than "mansplaining."

Immediately, I texted my fabulous friend Susie for her thoughts on the matter. She agreed that while mansplaining is an excellent description of that particular brand of misogyny where a man feels like he needs to be the expert, women need to be held accountable, too.  Arguably "Karen" does this to some extent, but it's still describes a very specific type of person.

After tossing several ideas around, Susie suggested "misplainers". Misplainers are people who tend to "miss the point before they start 'splaining." In other words, misplainers tend to jump in with an explanation without first considering the perspective of the listener.

I like this term because Susie's sassy sense of humor is spot on. I decided to write a light-hearted blog post about it. However, as I started putting it together, I started thinking of other ways that people disregard another's experience. Just because a person doesn't interrupt doesn't mean they're taking other's seriously.

What had started as an amusing observation of an oblivious, conversation-dominating stranger became quite the train of thought. I settled on the term Experience Deniers. While misplaining has its place, Experience Denial includes every instance that a person undervalues of disregards that experience of another. Once I put a name to it, I started seeing it everywhere.

As you may have guessed, I never finished the original intended blog post. With the chaos of the pandemic, BLM protests, and everything else that's been stirred up in recent years, the implications Experience Denial became bigger than I'd expected It also became more personal. Being able to write out about this required - and still requires - a lot of thinking.

​So I'm starting small.

Experience Deniers exist. They can be extremely hurtful, even when well-intended. Since it is impossible to full understand another's perspective, everyone is guilty of denying another's experience at times. The important thing what you do when you realize the mistake.

Earlier this month, I had a six hour EEG. It didn't reveal much, which isn't a surprise. Neurology is tricky. Seizure activity can't really be disproved, only confirmed. Fortunately, my neuro continues to be supportive as I continue to learn how to live with myself.

So, while I learned little from the EEG itself, I learned quite a bit while preparing for it. 

In the days leading up to the test, I took steps to wear myself out. I ran and worked out more often, took fewer breaks. As my symptoms began to appear, I was glad to see them. This made the jitters and clumsiness a lot more bearable. In short, I learned I can tolerate a lot more when my attitude is more accepting.

One of the least pleasant parts of my dysregulated state is that I become irritable and emotional. It's the symptom I most try to avoid. Even with my better attitude, I had periods of being a cranky-ass bitch. However, I didn't get as caught up in the spirals of negative self-talk. I still felt shitty, but was less of a jerk about it. I was able to own the moodiness and send it on its way much sooner.

I could go on much longer in my abstract, rambling way, but I'll skip to the point: I've decided to run a 50k. Sometime between late October and early December next fall.

A 50k has been a goal of mine for a while, but I've viewed it as some sort of I-Am-Healthy-Now landmark. The fact it, my health right now is what my health is. Yes, it has it's limitations, but I can do a lot. If I'm going to be a symptomatic mess, it might as well be cause I'm working towards something I really want to do. Waiting for a big reveal about the working of my neural system to make sense is a waste of time at this point.

I haven't picked a race or talked to anyone about this in detail, but I have worked out a plan:

1. Start with running shorter distances more often. 30 minutes daily presents its own challenges.
2. Include more yoga and bodyweight exercises.
3. As the weather gets hotter, increase distance with longer hikes instead of longer runs. The goal is to increase ability to hydrate without upsetting my stomach (one of my more annoying issues).
4. Admire all dogs I meet along the way (see photo above).
5. Focus on increasing running distance as the weather cools. The conditioning will be there.
6. Choose a race with an interesting terrain, but where the terrain isn't the biggest challenge.
7. Right now, doing shorter races in the interim seems like a bad idea. It could be encouraging, but it could also be frustrating. 
8. Get advice from ultra friends.

The biggest thing I need to do is develop a workout routine. I've already started running more, but a schedule is a good idea. Some kind of structure without being anal.

It's early days and I feel good to have the decision made.
​

I recently started running and working out again after taking the month of January off. I didn't want to take January off, but series of illnesses passing through made taking long naps the more prudent church. It happens.

​Ironically, the day before the first sickness was pretty excellent. I went on a long and delightful trail run, feeling better than I had since the previous spring. Developing an achy fever 24 hours later has me shaking my head when I think about it. 

Two weeks later, the second sickness - this time Covid - cropped up the day after I did some light floor exercises. It was my first time doing any sort of workout since the fever. I wasn't nearly as wiped out this time around, but the irony wasn't wasted on me.

Like I said, it happens.

Running and other workouts are a tricky venture because exercise both alleviates and aggravates my chronic symptoms. When done right, getting up and moving improves my focus and reduces my symptoms. However, if I push myself a little too hard, the next several days are rough. Vertigo, hand tremors, stumbling speech, all sorts of clumsy, fuzzy goodness.

It's like my circuits get over loaded and they require reduced demands while they sort themselves out. There's nothing to do but wait a bit and try again.

Whether I take this in stride or have a raging temper tantrum about these setbacks depends upon the day. It is disheartening to delay or decline activities because my brain is too staticky to function that day. Fortunately, I've become pretty fluent in reading and managing my symptoms. I also keep reminding myself the goal is a good life. Bad days are allowed in a good life.

I am optimistic, but also aware that things could quite suddenly go very wrong.

This tricky balance has been on my mind lately because, in three weeks, I getting a 6 hour EEG. This test is long awaited and I am excited. My intent is to do what I can to ensure I have symptoms while in that room. Whatever the results are, I want the neuro team to see something. Worst case scenario would be having no visible symptoms AND no activity detected by the electrodes.

I know what I need to do to become symptomatic. A few limit-pushing runs in the week prior will take care of that. The tricky bit is that I have things to do! I want to go all-in and just wipe myself out. At the same time, I want my wits about me in order to take care of new work responsibilities and life in general.

Knowing that I'm about to cause myself to become a fuzzy-headed grump makes me cringe. It takes so long to get on solid ground again. At the same time, this is a big picture choice. Being a cranky mess for the month of March could very likely lead to some lifetime benefits.

At least that's what I keep telling myself.
​

Today I've been contemplating the nature of words, their meanings, and how people use them. Specifically, I'm thinking about the differences in how individuals interpret words, and the miscommunications (and manipulations) that result. Even more specifically, I'm wondering how to communicate with individuals who use language in a completely different way that I do.

One of the trickiest things about not having a diagnosis for my chronic illness is that it takes a long time to explain what I am experiencing. Every time I go to the doctor, it is a hit or miss description of symptoms that may or may not be related. If I get a clear diagnosis, I will still need to talk through my symptoms, but a diagnosis will set the context. It will, I hope, make for smoother communication. In the meantime, I keep working to improve my medical vocabulary.

​For example, not long after my first seizure, I started experiencing intense dizziness and disorientation. The feeling was very similar to still being drunk while also feeling the beginnings of a hangover. Diagnosed with vertigo, I went to vestibular therapy. My excellent physical therapist figured out that the root cause of my dizziness was an eye-brain communication issue, likely a consequence of the seizure. The therapy helped a lot, although bouts of vertigo still pop up every now and again.

In talking to new doctors (I had to switch because I moved cities), when I would speak of having vertigo or experiencing dizziness, the doctor would automatically want to recommend me to an ENT to have my ears checked out. I would explain, no, that's not my problem and tell them about the vestibular therapy. This conversation happened regularly, even with the same doctors. While I did in fact have vertigo and experience dizziness, it seemed these words meant something different to the doctors.

While venting my frustrations with a friend who is a PT with loads of neuro experience, she pointed out that for many, the word "dizzy" communicates and image of spinning rooms and terrible balance. My experience, however, is more like intense static that is hard to tolerate. I am disoriented, but my balance is fine. After talking with her, I've started using the words like "static" or "fuzzy" to describe the sensation. I am also more upfront about saying I've been cleared of any inner ear issue.

This made a huge difference this past fall when I moved yet again and started up with new doctors. Explaining my symptoms went so much smoother and, as a result, they were better able to help me move forward with testing and treatment. It was a lot of work to get to that point, but new that I needed to be understood in order have the right questions asked. Yes, the medical team play a part in this, but since the words I was using wasn't getting the result I wanted, I needed to change my words.

I bring all of this up because I want to figure out how to clearly communicate with people who are very emotional in their communication style. I'm talking about people who use lots of buzzwords, hyperbole, and highly emotive language. Being more measured in what I choose to say, I find this confusing and find myself becoming skeptical of everything they say. Sometimes I feel I'm being manipulated, like the speaker wants the audience to respond a specific way and is doing everything in their power to get that response. I want to shout, "Just tell your damn story! People will respond how people respond!"

An example of this is a woman I know who will spend paragraphs telling people how vulnerable she's about to be before writing a rather vague story. In my experience, anyone who can talk that long about how vulnerable they're being isn't being vulnerable. They're using that word as a shield, a way to increase encouragement and decrease pushback. In real vulnerability, the people involved are too much in the moment, too busy facing the risk and fear to think of anything else. Vulnerability is recognized after the fact, when one has had time to breath and reflect.

This woman is one of two individuals in my life that I need to talk to. Individuals who throw around words like "boundaries" and "honesty" all while avoiding truths they don't want to deal with. Neither have made a genuine effort to understand an experience outside their own. To be frank, I'd happily walk away from both these toxic people, but circumstances won't allow it. They are in my life for the long term. 

So, since they will make no effort to learn my vocabulary, I need to use theirs. 

​Blerg.