Scanning for Content

“So the first step of the strategy is “Preview”. That’s where you scan over the information you want to remember, and get an idea of what will be covered”. My new speech language pathologist points to the appropriate section in the instructions as she speaks.

I frown at her statement, uncertain. “When you say preview, what do you mean? What exactly do you want me to do? In truth, these days I mostly look at the pictures to find out what an article is about.”

“You’ll scan the information; just look through it briefly and get a general idea of the content.”

That’s when I realize the problem – something I have never put into words before, something that I haven’t even really been aware of until this moment. “I don’t scan through writing; I can’t scan anymore. It’s either a bunch of unreadable lines or I have to fully commit my attention and read it in detail.”

We talk on, but part of me stops there. Is that true? Is that really true? I can’t scan through writing anymore? Well, I don’t. I definitely don’t. I didn’t really realize it, but I don’t. No wonder letting any information in is so frikkin laborious. I have to commit all my attention to it. I can’t just casually scan through an article like I use to, deciding if it is worth my full attention. I have to commit. The reading switch is either on or off, there is no middle ground.

Did I do this to myself? Is this one of those moment when my compensatory strategy actually gets in the way of me functioning? I rigorously control what information I take in. I usually keep myself on a tight leash out in the world. I choose to see or not see. I choose to read or not read. I do this to avoid getting overwhelmed, which happens so easily now. I also do it to preserve my energy, my precious cognitive ability. But could I be undercutting another ability, that ability to scan, by my rigid on/off choices of processing information?

Later that night, I test myself. I challenge myself to scan through an article in the paper.

Damn. I sigh. It’s just letters before I choose to read it. I recognize it as writing, and individual letters, but not as individual words. And when I attempt to loosen my focus but not move to reading mode, it remains opaque and unknowable.

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Each letter is identifiable, but together they have no meaning until I choose to read with my full attention.

So I try for something less than reading, but more than scanning. My grade school teacher was very clear that the first sentence of every paragraph should summarize or highlight the main point of that paragraph. So how about I just read the first sentence of each paragraph?

And I do. And it goes like this. I find the first sentence of the article. Focus, open my mind, read it. I use the visual cue of the gap between the paragraphs to hook onto the first sentence of the second paragraph. While switching between the two paragraph, the words are a blur, unreadable. Then I focus, open my mind, commit my energy, and read the beginning of the second paragraph. After, I feel myself reigning my awareness back in, folding up my ability to read and switching to visual cue mode where I identify the beginning of the next paragraph. Focus, open, commit, read. And again, withdraw, close, switch modes to visual cue. Over and over again.

Weird. So Weird. And a hell of a lot of energy.

I know this is not how I use to do things, so rigidly, so regimented. This is definitely not scanning for content nor major themes. This is truncated reading, and not very pleasant. And – minor complaint here – the first sentence of these paragraphs do not convey the heart of the article, I expect. Or the article is so disjointed it makes no sense.

It is amazing, on some level, that I have gone 4 ½ years and not realized my ability to scan through writing has been missing. I suppose it is another one of those basic and fundamental skills that is so ingrained since childhood we aren’t even aware when we use them. It does makes sense of some of the struggles I have had since my first mTBI.

I use to love filling out forms. Now, hate forms. Light bulb moment – it’s because I can’t just glance over a form and figure out the important parts, or what it is about. I have to laboriously read it in it’s entirety instead.

I am also very limited on what I read on the internet, articles and such. Now I realize it might be partly because I have to commit to reading every article completely and seriously… and most internet articles just don’t deserve that level of attention. That cuts down on the number of topics I can casually check out, and also increases how much energy it takes me to engage with them. Wow.

And the paperwork in my life. I just recently gained Medicare coverage, and both the government and my new prescription plan sent me lots of papers. Lots of papers. I read the Welcome to Medicare pamphlet they sent from front to back. Every word. Not something I would have bothered to do in my previous life Then, I would have just glanced through it and left it at that, confident I got the important bits.

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They actually did a good job making this easy to read. Go Federal government!

My inability to scan the written word must contribute to why I feel insecure about official information I read. I assumed it was because of my now less-than-stellar memory, and my concern that my brain wasn’t processing the information correctly. Now, I realize part of it is also that I fear I’m missing something, something important, because I can’t scan all the information. If something isn’t in bold, highlighted, or written in some other way to make it stand out, I might miss it.

I wonder why I’m not able to scan right now, and if it will return. I expect it will. I vaguely remember scanning articles once or twice, on good days, sometime in the last year or so. Whether that’s true or not, I don’t know, but I feel like it is. That means it’s just a very peak ability for me right now, not lost. Probably, as my energy improves and my cognitive ability is on a more stable foundation, it will become part of my life again. That will be convenient, when (if?) it happens. A small tool, but a powerful one. Certainly one worth having in my toolbox.

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Why Oh Why?

Something is wrong, and I want to know why. I went out with a new friend for dinner tonight, and by the time I got home – now – something broke, something is no longer right with my brain. I have a pounding, full fledged headache, the type I manage to avoid most of the time. Fog, fatigue, and confusion have settled over me, stifling my evening conversation with Mary. I try to pass it off as a little thing, that I am just a bit out of it… but that isn’t true, and Mary knows it.

Mostly, it is my words giving me away. Or, more specifically, my stuttering. Stuttering has been one of those less than pleasant outcomes of experiencing a concussion. A problem that I never had before, but now seems to be here to stay. I can go days – weeks even – without stuttering once. Or, if I feel like I am going to stutter, I can pause and choose a different word. Something that doesn’t start with a “W” or a “C”. Something that still gets my point across.

But tonight, for whatever reason, it is bad. Worse than the fog and fatigue would imply. I have trouble speaking, repeatedly. I stutter even on the most routine phrases. Some words I am not able to get out at all, and it frustrates me. I heave a great sigh, then soldier on. It is what it is. I accept that whatever I will say tonight will be inelegant, choppy, and weird-sounding. After more unclear, disjointed words – sentences seem beyond me tonight – I give up. Nothing life-threatening needs to be conveyed at the moment… it can wait until I am more coherent. I’d rather listen to Mary’s stories of her day, anyway.

During these times of true fucked-up-dom, these times when my ability plummets and my symptoms are really bad, it only bothers me a bit. I mean, as long as I don’t have anything planned, or anything pressing that needs to be done. I just relax into the reality of my limitations, confident (hopeful? expectant?) that things will be better tomorrow, after a good night’s sleep. It is evening, now, and I have done all that I have planned for myself today. Nothing else is required of me. My brain melting into a puddle? Meh. Not great, but not the end of the world.

I know it upsets Mary much more than it does me. Usually she hides it, but this time she said it right out. “It upsets me when you do that” – that being stutter, saying unrelated words in an incoherent manner, and being unable to carry on a conversation. I wonder if it is her fear that these impairments will come back to stay, or if it is frustration at not having someone competent to come home to, or anger that I have these problems at all. I don’t know. In truth, it doesn’t matter how she feels. Tonight, there is nothing I can say to make it better, to make it different for her. Hell, there is nothing I can coherently say to comfort her.

My lady is a problem solver, though. And a damn good one. So, of course, we inevitably move on to sleuthing. Why? Why am I this way, tonight, right now?

These stupid symptom, these irritating impairments seem to have popped out of nowhere. And, they might have. But likely, there is a reason or reasons my abilities have fallen so abruptly to way below my new normal. Mary and I have been doing this a while, so we consider everything. What might have caused these symptoms?

  • Sugary desert? I had about four bites of a sugary treat at the end of dinner. I don’t usually eat a sugar bomb like that, and maybe that caused short-term inflammation in my brain and decreased my functioning.
  • Salty soup? I had some sort of egg drop soup for dinner, and it had a strong flavor. Perhaps it was full of salt and dehydrated me, causing the headache.
  • Doing too much? I was kind of tired today. Not deeply fatigued, but a more general overarching feeling of tiredness. Perhaps with that high baseline of fatigue already, I overdid it driving to and from btown in traffic and having dinner out. Maybe that pushed me over some invisible edge, and now I am descending into the darkness and pain of overdoing it.
  • Menstruating? I started menstruating today. That always gives me a day or two of noticeable low energy. Plus, I’m taking ibupropen for bad cramps, which has a history of dehydrating me, too.
  • Poor sleep? Is this just the outcome of a few days with only mediocre sleep? I keep waking up at night for some reason, and my sleep has not been as restful as usual. Perhaps this worsening of symptoms is from that.
  • Overstimulation? The place I went to eat had music in the background, just loud enough to be particularly annoying. Once other people started filling the restaurant, I was no longer able to hear my companion. Perhaps all of that stimulation pushed me over the edge of functioning?
  • Slouching? I slouched through dinner. The chairs were uncomfortable to lean back in and I was trying to engage my dinner guest, so I leaned forward onto the table. Perhaps an hour or so of that tightened my shoulder and neck muscles enough to give me the headache and the poor brain functioning.

It could be any of these things. It could be none of these things. It might be several of these things. Did I mention it might have been none of these things?

That is the frustration with brain injury symptoms. They come and go, and sometimes it seems completely random. They come and go, and somethings there is a reason or reasons that can be fixed. It is hard to know, in each situation, what is actually going on. Perhaps my headache is from the half moon shining tonight, and the brain fog is from eating swiss chard yesterday. Absurd, I know, but possible. It all feels absurd on some level – this injury, these symptoms, the long arch of my healing, the continued impairment. How fucking absurd.

Anyway, when it comes down to it, there are only a handful or so solutions to be implemented. There are only so many things we can do in the moment, and hope to make it better. Here is what I ended up doing tonight:

 

  • I rested in a darkened room with my eyes covered for quite a while,
  • I drank glass upon glass of water,
  • I did the stretch the PT recommended to help with my headaches, the one that relaxes my shoulder and neck muscles,
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Even when my brain is not working that well, I can manage laying on my back and stretching out my arms.

  • I took my first CBD pill to combat any potential brain inflammation and to combat tight muscles,
  • I chose an electronics fast – no tv, no phone, no computer, and
  • I went to bed an hour early.

I sleep well enough. I wake at 4 am feeling dry so I guzzle a pint of water. I wake at 8 am, and drink another pint as I am still thirsty. Thankfully, by this morning my headache is just a dull tension headache now. My mind is clear and my functioning within my current normal range. The crazy night of impairment has passed, with no lasting effects.

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What a relief the morning can be.

Why did it even happen? I have no idea. I will probably never know exactly what caused it. But with Mary’s encouragement I trotted out all my solutions, knowing one or more of them would help make things better. And look, here I am. Healed for now. Writing. Functioning. It is a good day.

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Staycation

The waves swish rhythmically against the shore, small and frequent. A steady breeze from the north keeps the bugs away – mostly – and the sun is blunted by layers of tree leaves. I sit here in my beach chair, writing this, as Mary bobs in the water near the shore. As I watch, she slowly travels down the coastline, becoming smaller and smaller. She motors away to explore new lands; her relentless sense of adventure has followed us into vacation.

Suddenly, a series of louder and bigger waves break against the shore. One, two, three, four and then the familiar rhythm returns. A thousand feet away or more, boats motor back and forth. Far enough away that the sound of their motors isn’t irritating, close enough to see all the different types of boats putting by. It is amazing to me that such a distant thing – a small boat traveling through the water – can have a specific and notable effect on the shore a third of a mile away. Thirty or forty seconds pass, maybe a minute, before each boat’s wake hits. The boat is gone before it’s waves wash against our shore.

Mary and I are experiencing an excellent staycation over this elongated Fourth of July weekend. We, who live year round in a summer destination, have made a point of enjoying the local beauty and beaches this year. It is in our budget, too, which helps this time feel relaxing.

Now I can barely see Mary, she is so far away. She stops periodically and waves to me, just so I know everything is okay. I wave back, to reassure her I see her and that all is well here, too.

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You can barely see Mary in this photo (black arrow), as she explores the next stretch of beach.

I could have joined her on her adventure, but in truth our water interests aren’t quite balanced. I can take her anywhere and if there is water to be swam in, sat by, or touched, she is happy. Me, I like water, I like swimming, but I like other things too. I can’t stay in the water all day bobbing around or poking along the shore as Mary can. So, instead, I sit in the shade and write this blog post.

I haven’t taken a vacation in a long time.

As I write the word vacation, part of me protests. Dude, you can’t take a vacation! You don’t work. Every day is a vacation for you! And really, if I am always doing less than average, less than a normal person, how can I take a vacation? I’m not meeting general life accomplishment goals, how can I stop when I’m failing and do even less?

As I catch that thought, those feelings, I stop them in their tracks. There is no room for that belief in my world. Disabled people – impaired people like me – deserve and need vacations too. Even though I am performing below cultural expectations, I need to stop trying to accomplish or succeed for a little while and just enjoy myself. I don’t have a boss telling me when I can or should take a break, so I have to tell myself, figure it out myself like so much of this healing journey.

To vacation, one must take time away from one’s daily activities. Period. If those daily activities are working for money, great. If those daily activities are feeding myself, weeding the garden a bit, and petting cats, great. The routine still needs to be broken. And desperately.

Last week, it was all write write write. I thought about writing, I read other people’s writing, I went to a writing group and talked about writing. Then I did more of my own writing – I was hoping to start building up a reserve of blog posts so that I can feel a little less pressure every week to produce. And you know what? Without even knowing it, without being aware of it, I overreached myself. I became tapped out, used up, out of ideas and passion. Done.

So it was time for a vacation. And, incidentally, Mary was off at the same time I realized I needed a break. She has an extended 6 day weekend, and we have been beaching and swimming it up every day.

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I still have a waterproof camera that works, and I still take about this same picture of myself at every swimming hole.

Vacation is a time to recharge. Nothing has to be accomplished. There is no intent, no focus required. The whole point is just to be, to relax, to think of nothing and just enjoy. And that is what I have been doing.

And so, I am on this beach, watching this woman, and enjoying our time.

True, since it is a staycation, we could do this beach stuff any old time. But here’s the thing – here’s the bonus of it all. Our area is in the middle of a heat wave – a really unpleasant one. High temperatures and high humidity make Charlie a tired, foggy, and grumpy girl – without swimming intervention anyway. No AC in our main living area. Sweltering.

Mary and I – both go getters, both task oriented – are so overheated and tired out from the heat that – ding – we aren’t doing anything. We are just relaxing. Sitting outside, staring into space. I’ve been watching my bees. Mary has been getting a lot of sun. Lots and lots and lots of swimming to keep cool and stay sane. So much heat, that I don’t even have the urge to do any tasks. It’s that hot. And so, for the first time in I don’t know how long, I am on vacation. Really. For sure.

And I’m loving it.

So adieu my friends. This is an extended status update. I am not allowing my vacation to be broken up by a task so heavy as finishing a blog post. So you’ll get this writing just as it is. Blessed be.

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Humanity

I return from my morning walk calm and centered. I am thinking of nothing, quite happily, as I begin my stretching regime. Francis joins me on the floor, purring for all he is worth, enjoying a human sharing his realm. After a bit of floor time, I wander into the kitchen to say hello to Mary as she makes breakfast.

I can tell from a glance that she is agitated; something is bothering her. My shields are down, I am relaxed and getting ready for the next step of my day. I don’t have any defenses against what she says next.

“I foolishly read the news last night before bed. I had a horrible time trying to fall asleep after that. Do you know what is going on?”

She doesn’t give me a chance to say anything, or to consent to the onslaught of national news. Instead, she immediately starts sharing the poison she has ingested online.

“Trump is separating children from parents. He’s taking away the children of people who come to the U.S. seeking asylum, or those illegally immigrating.” It is a new policy, and clearly meant to torment. She tells the story of a news reporter allowed into one of the facilities housing these children, the confusion and fear and pain. And specifically, she talks of a small child crying uncontrollably, and the staff standing by unable to do anything because they are not allowed to touch the children. Needless pain, needless suffering.

She comes to my arms and I hold her as she cries. Soon, my eyes tear up, too, and sorrow fills my entire being. I have no defenses to avoid this hurt.

After a time, I let her go and she continues to make her breakfast. I sigh, and refocus. In truth, I think of escape, escape from this knowledge and escape from this situation. I already feel the story leaching away my energy, my precious energy. Energy I already decided to use today on writing and gardening. I feel trapped and unable to breath, wanting to protect myself and protect my ability to function today, yet also not wanting to shut out the world completely.

She turns and starts to speak to me more about this new policy, and I flee. I say something – I’m not sure what – and hustle outside to finish my stretching. I push the knowledge she shared as far away from me as possible, staunching the flow of energy leaking from my psyche.

I finish stretching. I pet the cat, check my bees, and then pull a few weeds in the garden. I start to feel the first hints of calm. When I get hungry, I go back inside.

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My Italians bear watching

Mary is irritated and hurt, of course, from my abrupt departure and my refusal to listen to the issue she wants to discuss. I can see it in her face and her get-away-from-me energy. Sigh. I spend more energy, making peace with her. Not quite as much as the initial incident, but again energy I cannot recover. I do feel better once she decides to get along with me again. But still, that best energy of my day is spent. The creme de la creme of this day’s life wasted on something that did not move my life’s purpose forward nor make the world a better place.

But I am human. I retain my humanity regardless of how much or how little energy I have. I care, I do care, about the horrible and offensive actions the United State is propagating. I care, yet I do not know one thing I can do to make it different, to make it better.

Since my injury, I have stopped watching the news. I have stopped reading the news. I have stopped talking about the news. I wasn’t particularly a news hound before, but now I deliberately and aggressively shut it out. It simply isn’t in my energy budget. It is non-essential. It does not create anything in my world, nor does it fill my heart with life. It takes, and does not give.

I know what a privilege it is, that I can consider ignoring this and many other problems in our United States. That is the nature of privilege, that you don’t have to deal with something unless you choose to. But knowing that, and acknowledging my privilege, does not double my limited energy nor make my limited life more functional.

Since the last presidential election, I have felt helpless as change after change was implemented, then hopeless. It is both a blessing and a curse to live in a more liberal state. A blessing, in that I have rights and I am not harassed. A curse in this time when things are happening that I judge are wrong, and I have no one to harass. My state and federal representatives may not agree with me on all things, but I believe we have similar beliefs on human rights, basic human dignity and a respect for all people.

So there is no one to harass. And it seems like an exercise in futility to contact an administration who so clearly does not care what I think. So what to do?

Donate to an organization that makes a difference? Right now, I try to donate 1% of my income to make the world a better place. It isn’t much, but it is something.

Go to a protest? Maybe, but that is days of energy spent in a few hours. There is a protest this weekend, happening all across the country, and we are conveniently near a border.

Families Belong Together with Date Twitter

So maybe I will go. Maybe not. In truth, I question whether it makes any difference at all.

Write letters? To who, on what, and why would I believe that they would actually matter? That is another big chunk of my energy spent, and I want to know I’m going to get bang for my buck.

Talk to people with different views? I struggle daily to speak whole sentences, to appear socially normative. Dealing with conflict? Not my best skill before injury, and now definitely not something I do well. Nor do I have the filter, the shield needed to protect myself during conflict or around negative feelings. Vulnerable population, table for one please.

Perhaps this blog post is just an elaborate justification to myself about why I do nothing. If I were able-bodied, would I truly be doing anything more? Even then, I expect, I would struggle with how to make a real difference.

I just bumble along, doing the best I can. Yes, I run away, hide, from the truths of our time. I avoid and don’t think about it and try to talk of more pleasant things. Right or wrong, that is what I am doing. Damn if I am going to give up the life I can live, making the differences I can make, to wallow in a hell that I cannot change.

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Finding Food

I push the cart along, heading directly towards my next item. I have shopped at this grocery store for years – for years before my injury – so I know where everything can be found. I have picked up the salami and romano cheese; now it is time to get tuna and then some beans directly across the aisle. After that, I’ll grab some olives at the end of the row, then swing into the chips aisle to find something to go with my egg salad sandwiches this week.

I like the sense of mastery that comes from knowing where everything is in the store, the efficiency. I like having good food, and I like getting the brands I know I enjoy. What I don’t like, what I resent, is the energy expenditure. What a stupid, meaningless exercise to waste myself on. Regardless of what I get today, regardless of what I accomplish, in a month or two I’ll have to come back and do it all again.

I would rather be spending this time writing, or resting, or gardening in the sun outside. I would rather be talking to a friend, or in a coffee shop, or – no, actually no – not doing my bills. There are so many things I would rather be doing than food shopping. Says everyone, everywhere. It is not only the driving to and from the store (30 minutes each way) and the shopping (1 – 1.5 hours). It is the hauling it to the car, and then hauling it out again into the kitchen. Then, it is still not done. There is the unloading of the bags, and the finding space for every item so it can be found when needed. All told, for this task, I am easily looking at three and a half hours of my life, of my best energy spent. The best energy of the whole day, spent to shop for food.

What a waste.

There is no economical way around having to do it ourselves. Today, I am surprised by how much I resent this task, resent the hours and energy food shopping takes from the rest of my life. It burns in my gut. I’ve even been irritated enough to kvetch to Mary about it several times beforehand. Irritation. Frustration. A waste of my energy. So boring. This is a new thing, this irritation and boredom, something that has only manifested in the last six months or so.

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A well stocked pantry is key to a happy cook and easy meals.

In the years following my mTBI, food shopping has been a pleasure. Or a privilege. Rather, an opportunity at success. It was a big deal, for me to succeed at food shopping alone. It was miserable. It was clearly too much. It was a trial of my ability to focus, to drive a car, to find the needed items. It gave me a headache to load the items into my car, or even push a full shopping cart around the store. It was insanity.

But still, it had to be done. And I was determined to do it. Why? Because I needed to succeed. Succeed at least at one thing, even if I couldn’t succeed at much else. I needed validation of my existence, I needed to feel even a hint of independence. I needed to cling to the idea that I could contribute to my household, that I was an adult.

All those feelings, all wrapped up into such a mundane task. And it was a battle, for months, for years, to do it. A battle with myself to find the items on my list, to tolerate the fluorescent lighting, to deal with the noise of carts and people. A battle with my limitations, with my world.

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The inside of one grocery store looks much like another… but alas it is not.

The trick, in the grocery store, is not to see anything. Really. Trying to see items on a shelf is a quick way to become overstimulated, which quickly leads to overwhelmed, which almost invariably leads to anger, tears, and leaving the store. So, it is best not to see.

Obviously, I don’t wander around with my eyes closed. What I mean by not seeing is not allowing my brain to process my surroundings. I have become adept, over the years, at the soft focus. Enough awareness of my surrounding that I don’t run into anything. Not enough awareness of my surrounding to waste energy processing information that I don’t need to know.

And it is amazing, really, how little I need to know to accomplish the task of shopping. I don’t need to know the year, I don’t need to know where I am, and I don’t need to know how many types of balsamic vinegar the store caries. I just need to be able to spot the one I want, once I am standing directly in front of it. That exactness is made possible by me knowing – truly – precisely where everything we buy is located in the store.

Most of the world, certainly most of the store, I simply don’t see. It doesn’t exist. It doesn’t need to exist, for my purposes.

The worst – both now, and earlier in my recovery – is when I am sent to find a new item. So much processing, for such a small thing. So many questions, so many choices. What section will the item be located in? What sort of item is it – something in a bag, a bottle, a box? Do I need to get a particular brand? If so, what are the colors on the bottle, the markings?

And then the scanning must commence. Scanning in a grocery store feels like giving blood, it feels like my life is flowing out of me as I stand there in the fluorescent lighted aisle, looking… looking… looking. Certainly my best mental energy is being spent, trying to make my eyes see something new and unknown. Sometimes I have to stop before I find it and then quickly leave the store because it all becomes overwhelming. Sometimes I am able to narrow it down to a segment of shelf. Then, there are more choices. Which one do I want? If they don’t have the exact brand requested, which one should I choose? Low sodium? That’s good, too much salt is bad for us. But it’s tamari sauce, and the main taste is saltiness. Regular, or organic? The one made in the U.S., or the one clearly from an Asian country? What are the ingredient? Does this one have additives, this one not? Decisions decisions decisions.

All that struggle, just because Mary wanted me to pick up something new at the grocery store. All that struggle, for something most people can do on a whim. But, alas, in this, I am not like most people.

I am glad I have graduated from struggling and pain, although I regret losing that sense of success at a task well done. I much prefer to be on this side of my healing process. Doing a mundane task and feeling resentment and irritation, but underneath those feelings is mastery of the task and a basic competence and wholeness of soul. I appreciate, now more than ever, what a gift it is to be competent. Even for such a small thing. Even in such a small way.

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Two Year No-Work Anniversary

This year’s no-work anniversary was barely a blimp on my radar. I forgot about it completely. If Mary hadn’t reminded me that the date had come and gone, this particular blog post would never have been written.

It has been two years now since I have worked as an Environmental Scientist for a State agency. Two years. That is such a long time. Yet, it feels like no time at all. Work, it was so hard to leave you, but I am endlessly grateful that we broke up.

I remember when I stopped working, and I assumed that I’d be back at work within a year. Maybe even within six months. Certainly anything can be fixed with a year of rest, right? I wasn’t aware, then, how deeply I had depleted my body and soul and what the ultimate cost of that would be. I was still caught up in my old life and old realities, where broken things healed quickly and with just a bit of rest and love. I wasn’t aware, then, that an overworked and overused brain doesn’t heal quickly. Not quickly at all. And sometimes, it doesn’t heal.

When I look around at my life now, everything has changed. I have changed. I am very far from the person I was when I last worked. Instead of the worn down, exhausted, trapped, cranky, confused, hopeless person with my world aggressively limited to a few tiny inches, I am rested, calm, happy, and slowly building a stable foundation for my new life. I am starting to develop a circle of friends. I have new interests, new hobbies. My world is slowly expanding.

I very much prefer my current reality. If that means not working right now, so be it.

I haven’t been thinking about work, or this no-work anniversary, or employment at all. I have been thinking about which days this week I need to write, to get my blog post done on time. How to manage my week so that I have only one real thing I need to do a day (“real” here means something that requires my highest functioning and clearest mind). And of course, now, my bees. Bees bees bees. I love my bees.

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Me and 10,000 of my closest bee friends. Photo by Rob Swanson

Do you know the most surprising thing? It doesn’t bother me that I am not working. Not even a little bit. Me, who clung so desperately to my job, feels absolutely no lack in my life now. It was a damn hard adjustment, but it was a necessary one. What a gift to wake up every day and have the world’s expectations of me – my expectations of me – fit with what I have to offer. Thank you Goddess.

Is it a crime, as an adult, to not want to work for money? Not legally, no. Culturally, though, saying such things is an easy way to be branded as a grifter, or as someone who is lazy. I am hesitant to say such a thing in public. Perhaps that is my own judgment – left over from my able-bodied previous life – of people who don’t work as hard as possible, as much as possible. Yah, that’s probably what that is.

The truth is that I work all the time, every day. My nature is such that it is impossible for me not to be working. But I am working for myself, at my own pace, for my own purposes. There aren’t productivity quotas, except maybe getting up every day and making breakfast. My life is full of small things, small goals. Make dinner. Call a friend. Drive to town and back. Small tasks to fit my small energy.

Keeping my energy for my own goals is necessary for healing. Required. When I don’t have enough energy to even sustain myself, how can I sustain other people, other organizations? Short answer, I can’t. Being honest with myself about my limitations, and saying no to things that I cannot do allows me to say yes to my healing. And since I’m not working, I damn well better be saying yes to my healing.

I have found that if an activity doesn’t sound appealing, it means I don’t have the energy for it. I really really wanted to return to roller derby after I was injured. But my body knew (even if my ego didn’t) that I wasn’t up for it. My ego was saying yes, but my body was like ~meh~. Even with all my internal cajoling, pleading, hoping, demanding, my body was still ~meh~. And that was my answer. I wasn’t ready.

On the flip side, when I am ready, an activity starts to sound good. Like going out in the evening for a monthly potluck. Overwhelming, stressful, too much, stop trying to force me to socialize! That was my response a year ago. Then, some healing, and now it sounds like a fun possibility. Things within my energy budget sound good. That makes decisions easier to make – convenient, that.

But on point – working outside the home for money, even volunteering with an organization don’t sound appealing. So, it’s not time yet. When it is time, I’ll start feeling restless, confined, bored. I’ll have a little extra energy in my pocket, and I’ll start looking around for something to spend it on. And that will turn into my first volunteer gig. But that time is definitely not now.

Definitely not now. Stop trying to force me to do more than I am able! Hah. I know you aren’t. It feels so overwhelming, though, thinking about returning to the workforce right now.

So, my second no-work anniversary. I expect there will be several more before this chapter of my life is complete.

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Cotton is the traditional second year anniversary gift. Can’t wait until next year – that’s leather!

I am content with my life. I have a place to live, a partner who loves me, and I am able to pay my own way. There isn’t a lot of extra, but there is enough. That’s heaven in some places. Sure, I’d love to be healed and jump to the next phase of my life… but I’m not there yet. I don’t know when I’ll be there… hell, if I’ll ever get there. And for the first time in my life, I’m just enjoying the journey. I’m not worrying about the past and things I can’t change. I’m not worrying about the future and what might or might not happen. I’m just living my life, one day at a time. Filling my time with small, attainable goals. Trying to slowly improve my health and my abilities. I’m not working for money, but that is just fine by me. Blessed be.

 

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Lucky 13

Thirteen is an excellent number. Not only is it a prime number – a number that can only be divided by itself and one – it is also the number of weeks in a season. Astronomically, I should say, it is the number of weeks in a season. Clearly, in Vermont, winter lasts more than 13 weeks.

Regardless, today is a special 13 day for me. Today, I publish my 13th weekly blog post in a row. Success.

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My posting activity over the past year. Note the sudden weekly posting starting in March. Go me!

To appreciate my success, you need to understand that I have wanted to publish a blog post weekly since I started writing my blog in October 2014 – more than 3 ½ years ago. All this time, I have ached, longed, desired to write a blog post every week. But I just couldn’t. I certainly tried, but it was really and truly out of my reach. Not only didn’t I have the energy for all the writing and editing involved, I simply didn’t have the mental clarity needed, regularly enough, to make it happen.

Thankfully, things change.

What changed? Increased thyroid supplementation. That is the core of it, that was when the extra writing naturally became possible. Before that, though, there were years of foundation-building healing that have allowed me to progress to where I am now. Resting, supplements, stopping work, adjusting my life and expectations to my current reality, daily hyperbaric oxygen therapy – all of these have helped improve my life and made my energy uptick with armour thyroid possible.

It is also a question of priorities. In order to say yes to something – like my writing – I have to say no to other activities, sometimes very fun and fulfilling activities. But, as anyone with post concussion syndrome (PCS) will tell you, there just isn’t enough of me to go around. I simply can’t do it all. So, with these 7 spoons of energy, what will I accomplish this day?

Write, write and write.

It probably isn’t obvious, but each of these blog posts takes me hours. Hours of my day. Hours of several days, actually. Usually, I spend about three days of my best energy writing each blog post. All that effort, to put out 1200 or so words out into the universe each week. Kinda crazy when I consider my limited energy and cognitive ability. But, I accept that I am not fast nor efficient anymore, and if I want to create something it is going to take some time.

There is something magnetic, something fulfilling, about being able to say I write a weekly blog post. It feels different than simply saying I write a blog. It conveys stability, reliability – like I’m doing something real, something that matters. It means writing is an active part of my reality. I am not just talking vaguely about something I think about doing, or do once in a while. I am actively a writer who writes. I am a verb, not a noun.

Like everything I do successfully, I have a routine. Tuesday is my drop dead blog post day. Saturday I spend writing away from home. Monday is when I have to have a solid draft done, in order to meet my self-imposed deadline. After 13 posts in a row, I feel confident that I can write a weekly blog post from now until forever. Actually, a few weeks beyond forever, since it usually takes me a bit to notice something has changed.

Now that this is part of my routine, and so set in stone, I realize I have just a smidgen of extra energy left over. Enough energy to poke my head up from my grindstone and look around for other possibilities in the world. What is my next step? What do I want to do? What are the possibilities?

I suppose I haven’t written it down or told y’all, but my intention has always been to write a book. Not a collection of short essays (because I never read those). Rather, my goal is to write a book that tells my story and shares the concrete reality of how mTBI and PCS impact my life. Many of my posts accurately capture the experience of recovering from an mTBI, living with post concussion syndrome, navigating the world with memory problems, and struggling to find fulfillment in a body and mind limited by chronic fatigue. I want to translate my blog into something accessible to more people – a book – that will also help the greater world to understand what it is like to live impaired.

That is my long term goal.

Here’s the thing. I don’t know how to make it happen. Not really. I’m having trouble grasping the steps to get from here to there, plus conceiving of the energy needed to make it happen. The reality is I am mentally impaired, and I have trouble with big level thinking now. I have trouble even articulating what I need. I know I need help. I need help framing the book, figuring out the story line, editing, organizing. I can’t do it alone. Those words are hard to write – I can’t do it alone.

But, I want to move forward. That desire battles with another truth – right now, I don’t have the energy for a big project like a book. Not really. So, even if I did find the help I need, I don’t have the energy to really jump on the task. I have a teaspoon of energy to share right now, and that would call for several gallons, clearly. Or, put another way, book writing is Champion Level 10, and with the armour thyroid I just progressed to Champion Level 3. I have a lot more leveling up to do, before I make it to book writing land.

So, what is my next step?

As with any task, I look to break it into something smaller, more manageable with my limited energy. Several times, I have been invited to submit a particular blog post to a publication or book, but I haven’t followed through. I both haven’t had the energy to do the editing, nor had the energy to get a clear idea of what editing I need to do in order to translate my blog post to a publishable item. No clear idea at all.

Last week, Mary reminded me of the local, very active writer’s group in the area. At her prompting (see Mary, I gave you credit!), I perused their website and found they have just the thing for me. Creative Non-Fiction, meeting twice a month at 10:30 am. Perfect.

Like, really perfect. Creative Non-Fiction means anything that isn’t technical writing (ex. textbooks, scientific articles). What I am doing is creative non-fiction. Twice a month – that’s an easy start. That fits my energy budget. And, miracles of miracles – it’s happening in the morning, during my best, most energetic part of the day. Yes.

It is on a Tuesday. You may or may not have noticed, but Tuesday has been my blog post publishing day these past 13 weeks. Experience has taught me that I cannot reliably do more than one thing at a time. So, I can’t expect to post to my blog on a Tuesday and regularly attend a Tuesday event. Therefore, I am letting you and the Universe know I am moving my line in the sand. Going forward, from now on, I will publish my weekly blog on Thursday instead of Tuesday. A simple change, making room for a new possibility.

Attending this writer’s group is my next right step. I will meet other writers and read, edit and discuss their work. I will learn things. Eventually, I will have them read and edit my work. Progress, mTBI style. A baby step at a time.

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