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.

IMG_3754

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.

IMG_3744

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.

Advertisements
Posted in Uncategorized | 3 Comments

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.

34394805_10156349459003563_3534094430556389376_n

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.

1200px-CottonPlant

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.

 

Posted in Uncategorized | Leave a comment

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.

Postingforpastyear_June2018

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.

Posted in Uncategorized | 2 Comments

Caffeinated

“Give it a try. Start slow at first and see how it effects you. It might really help.” she says.

I balk. I don’t want to take more drugs. Every day, I already take drugs to make me functional. I don’t want to take any more. In my heart, I am still a straight edge kid from the 80s.

I express my concerns, and she counters. She has some good points, reasonable points. Some of her words flash me back to Nancy Reagan’s “Just Say No” anti-drug campaign.  Some of what she is saying sounds suspiciously like “everyone is doing it” and “it isn’t a big deal”. Many a classroom discussion and poster taught me what that sort of talk is called – peer pressure.

4043107382_a3200acba7_b (3)

Even my favorite candy had Nancy’s message!

But she is not my peer, she is my doctor. And she isn’t asking me to use drugs recreationally. Well, actually, I guess she is. But it’s legal drugs. So that’s okay, right?

I’ve always considered caffeine addictive and a bit dangerous. And – really – just because everyone else finds it normal and acceptable, that doesn’t mean I need to do it, too. It wasn’t so many decades ago that benzedrine (benny) – an amphetamine – was considered a nice, casual pick-me-up.

I do use caffeine occasionally, and I have for years. I use it for a specific purpose, not as a daily crutch. When I did roller derby, I used it to boost my energy for practice after an 8 hour work day. It’d just be 30 mg or so, equivalent to about a 1/3 of a cup of coffee. Nothing drastic. Now, I use it for social events, about a quarter tab of excedrin, 15 mg. That little bit of up helps me drive safely to and from an activity, and leaves me enough pep to have a conversation or two. Occasional use for a specific purpose makes sense to me – it is a tool. Daily use, though? I don’t want that. I don’t want to be beholden to a drug to make my world go ’round.

Of course, that’s the funny thing. Because I do need that, every day. I’m on two, daily, life-altering medications. One, from before my mTBI, is for depression (Wellbutrin). It works damn well for me, took away the gray, didn’t dim my sex life, and gave me an extra push of energy to go live my life. The second, which became necessary since my injury, I’ve already written about. Armour thyroid. A life changer. I’d say in the last four months, my energy has doubled. That doesn’t mean I’m able to start working even a few hours a week, but it has made a world of difference for my daily functioning and life quality. Thank you armour thyroid.

But caffeine has always felt much more dangerous than either of those drugs, to me. Funny, cuz both of those are regulated – the wellbutrin so regulated my naturopath can’t prescribe it for me – and caffeine is not. But all this time, I’ve been afraid of caffeine.

Huh.

To be fair, I have had negative effects from caffeine since my injury. I’d use it, and then be down for the count for anywhere from a day to a week. Hours and days in a dull, energy-less cloud is no fun at all.

Since my energy has improved from the thyroid supplement, I’ve tried caffeine a few times. Something has shifted for me. I haven’t noticed a nosedive after using, at least in the same way. I mean, I’m tired the next day, but nothing like I was earlier in my recovery. I now theorize that it wasn’t caffeine, per se, that was causing me to crash. Rather, caffeine allowed me to do more than my depleted body and mind could handle, and then I had to pay the piper. There is an unpleasant price to scraping the very bottom of one’s cisterns of energy.

Since caffeine seems to offer some potential benefits to me now, I did some research. Before I allow myself to ride the caffeine roller coaster of sin, I want to know more. How does it work? What does it do to the body? How addictive is it? I found out some interesting stuff.

First, it is considered only minorly addictive. Withdrawal symptoms last for 7-12 days, then you are free to go. Not back, right?

Second, caffeine isn’t a stimulant. Surprise! I always thought it was. In reality, it is considered a stimulant enabler – a substance that allows the natural stimulants your body produces to run unchecked.

How does it work? Caffeine is both water and fat soluble, so it passes through the blood/brain barrier and enters the brain. Structurally, it closely resembles adenosine, a product of cellular respiration. It is so similar that it fills the brain cell’s receptor sites for adenosine, effectively blocking them. Normally, as adenosine locks into those receptors over time, it produces a feeling of tiredness. Since those receptors are blocked, you get a few extra hours without feeling tired.

As a bonus, some of the brain’s own natural stimulants – including dopamine – work more effectively when adenosine receptors are blocked. Plus, having all that adenosine floating around in the brain cues the adrenal glands to start producing adrenoline, another stimulant. Kind of a neat effect. Not adding any stimulants to the body, but simply deregulating our body’s ability to manage our natural stimulants.

HowCaffeineWorks

A pamphlet I found online, for those of you who like information explained with pictures. xox

Just because I have been cautious of caffeine doesn’t mean I don’t like it’s effects. Caffeine is a delicious drug which I very much enjoy, especially since my mTBI. It doesn’t make me feel like a God. No, even better – it makes me feel normal. Like I’m a normal person, who can do normal things, and function at a normal level. At least for a while.

It doesn’t make me smarter, but it makes me more able to follow a conversation in a crowded room. It doesn’t help my memory, but it makes me more tolerant of noise and light. It doesn’t solve my stuttering or word loss, but it lets me show up at social events feeling amicable, friendly and outgoing. It’s like visiting heaven, briefly. Daily worries and pain drops away, and I just get to experience the world. Beautiful.

My research also shows that caffeine offers some healthy benefits. Over the past decade, studies have shown caffeine helps seniors improve muscle strength, delays the onset of Alzheimer’s, and reduces the risk of skin cancer .

So. Caffeine, my frienemy. How about we explore friendship?

I’m starting slowly, with green tea. Not even particularly powerful green tea. I sometimes remember to drink it in the afternoon, when I feel the physical and mental weight of fatigue settling over me. Effects so far? I haven’t noticed much of anything. I think one afternoon it might have improved my mood, but otherwise crickets.

Caffeine. So pleasant, it seems almost inappropriate for everyday use. Perhaps that is my straight edge past, or my puritanical roots, or simply my unwillingness to change. I’m not sure. But what I do know is I’m going to slowly, slooowly, ease into making this not-so-scary drug a part of my life. How much a part of my life? I don’t know. I’m going to dabble for a bit, and then I’ll let you know.

Posted in Uncategorized | Leave a comment

Bee Prep

I lever the cement block into place with a thunk. It sits securely in the grass, and I stand on top of it for good measure. Beehives can reach upwards of 200 pounds in the fall, so the weight of one human offers some indication of how steady the block will be under a heavy hive.

I am completely focused on my task. I have been working on it for hours. I want it to be just right before my bees arrive at the end of the week.

Mary calls out to me periodically.

“I’m planting the eggplant and peppers!” she informs me.

Later, “I’m planting the arugula and scallions!”

Later still – “Do you mind if I plant these cosmos you bought by the tomatoes?”

Each is an invitation to participate. Each is a small hook for my attention. But I don’t dare let myself get distracted. As my energy flags, I know if I stop I won’t be able to return. If I don’t stay on task now, the task will not be done today.

What am I doing? I am leveling the supports for my three beehives.

Each hive must be level side to side. I give my bees foundationless frames to draw comb in. Without a foundation sheet as guide, they draw comb based on gravity. If my hive is cockeyed, their comb will be a mess – from the beekeeper’s desire for removable frames perspective, not from the bee’s perspective.

I am also leveling the hives from front to back. The back needs to be just a bit higher than the front. Over the winter, the slightly higher back combined with a properly positioned inner cover allows moisture to escape from the hive efficiently, keeping my bees dry. Bees can make their own heat in the winter, they can withstand temperatures below 0 degrees Fahrenheit. But. Bees wet from hive condensation cannot stay warm and will freeze into a giant, bee-flavored icicle.

IMG_3323

Stella approves of my work! Shown with just the bottom board and outer cover of each hive.

I started the task full of determination to get the supports just so, to have them be precisely level, precisely correct. That has lasted until halfway through the second hive. As my energy flags, so does my level of caring. I go from a desire and drive for excellence, to… well… good enough. Mostly level. Adequate.

The unusual thing, for me, is that brief period of expecting excellence, of demanding precision and accuracy from myself. I haven’t felt that in a long time. Years. My current life, my post-mTBI life, is about “good enough”. Good enough, actually, is the high point of what I expect. Adequate. Not a complete mess. Acceptable. These are the watchwords I live my life by.

Now, briefly, I brush against my old self, my old drive for excellence. Briefly, I live in a world where I can make exactly what I want happen. It is a foreign feeling, but also a deeply familiar one. I guess I haven’t lost that part of myself. I had thought it was gone. No, clearly it is just sleeping. Waiting until I have enough energy to live that life again.

But today, now – the only reason I am able to set up my bee hive supports at all is because of accommodations I have made for my limitations. So many accommodations. The biggest one is stretching out a task over days, weeks.

I can’t life the cement blocks – too heavy. I mean, physically I can lift them, but that is a quick trip to a painful headache that will last for days and the immediate fogging of my mind. So, I can’t pick them up. I used a cardboard box as a sled to drag them to the site a few weeks ago. A few days later, I found the energy to roll them, side over side, from where I offloaded them. It was damn slow, but it let me do the task without help. And that, my friends, is totally worth the tediousness of it all.

A week ago, I placed them in what I considered their final positions. Over the last handful of days, Mary and I have discussed their final location. This morning, I moved one of the hives to the west to reduce the chance of any interference with gardening. And that left only one task – leveling the hives – to do this afternoon.

One small job at a time, leading me to success.

It has taken me a long time to get comfortable with the small job mentality. It is not my natural track. My natural, or at least years-developed behavior, was to focus, push, and get a task done as quickly and efficiently as possible. Post mTBI, that wasn’t possible. Doing anything in one go wasn’t possible. Efficiency wasn’t possible. No, that was when breaking everything into small jobs became what worked.

The biggest, most difficult part of the change was accepting my limitations, accepting that my abilities had changed. Since I have accepted the reality that if I want to get anything done, it needs to be in little bits, I have developed the patience to let things unfold as they will. To see the long arch of a project, to accept that something I might have done over a weekend may now take me months. If I can do the task at all. It just is.

Once I accepted that, it became easier to see each step towards completion of a project as worthy of pride. Easier to celebrate my accomplishments instead of blowing them off as “nothing”. Cuz, friends, anything I spend my energy on now might be small, but it isn’t nothing.

I find satisfaction, now, in going out to the garage and pounding one hive body box together. Even though there are five to do, it’s fine if I just do the one. Sometimes I can do a second one, sometimes I can’t. I let my deeper self tell me in the moment what is best. I know that tomorrow, or maybe next week, I’ll come back again and construct another box for the bees. And another.

IMG_3348too

These boxes eventually got built and painted, as I had hoped. The box on the bottom left is a deep hive body that I won’t be using because of it’s excessive weight when full.

I still get things done. Just in smaller bits, on a stretched out timeline. I think my small job self-management is here to stay. As I improve, what I expect will change is the size of my “bits”. As my energy increases, the amount of a task I can do increases. For example, six months ago, I would have only been able to level one of my hives on a good day. Now, today, I managed all three. It was a bit too much, a stretch, but it happened.

Beekeeping lends itself to small jobs. Each colony is an independent universe. Three or four boxes make up the hive. In each box, eight removable frames holds the honey, pollen, and brood. Bees only need to be visited a few times a month, and none at all over the winter. I’ve found it to be a good hobby for someone like me who experiences chronic fatigue. I can do as much or as little as I want. Have as many hives or as few as I want. And put together the equipment a bit at a time, on my schedule, when I have the energy.

Plus the bees. Wow, the bees. They are fascinating creatures. They are fun to watch, adaptable, and unpredictable enough that I will be entertained for years to come.

IMG_1332

My colony last year, busy on a nice day in July. It died over the winter, unfortunately. I hope this year’s colonies make it through.

Posted in Uncategorized | Leave a comment

Certainty and Hope

“That is never coming back.” my neurologist says.

“What!?”

“You are never going to regain your sense of smell.”

“What? Why?”

She goes on to explain that the nerves that run between the nose and brain run through a small hole in a bone in the skull. Sometimes, head injury can cause those nerves to sheer. That causes some immediate loss of the sense of smell which worsens as the sheered nerves atrophy and die back. They never regrow.

Damn.

This is the first time that a doctor has told me with certainty that I am not going to regain a skill, a sense, a capacity. Always, they are vague. No one knows what I may or may not recover. I don’t know. They don’t know. But this, she seems extremely sure about.

Double damn. Because it isn’t just my sense of smell that I’ve lost, it is my sense of taste, too. The two senses interweave, intertwine like mating snakes, and it is unclear where one sense ends and the other begins.

To illustrate my point, here is a video of garter snakes mating I took a few weeks ago. A good visual representation of how smell and taste are intertwined.  /:-D

Now, to be clear, I do have some sense of smell, some sense of taste. My experience of those senses has changed, though. I have gone from a full piano of scent to 6 or 7 keys. I shifted from experiencing complex melodies, subtleties, layer upon layer of nuance with my sense of smell and taste… to twinkle twinkle little star. Only a few notes ring where dozens existed before. A complex weave to a blunted, basic tune. Music still happens, but so so much less. Dulled. Blunted. Gone.

I hate it.

The funny thing is that it took me a while to realize that something had changed – for all that my sense of smell was at the core of my self, my sexuality, my interactions with the world. SO many other things were vying for my attention after my mTBI – pain pain PAIN of constant headaches, work demands I could no longer meet and I didn’t know why, financial stresses, and a deep confusion that nothing seemed to fix.

My sense of taste and smell didn’t get me paid, get me approval, or get the pain to stop. And for months, hell – years – there was no bandwidth to consider anything but the screaming problems of the moment. I first noticed something was off about six months after my injury, when Mary kept complaining about unpleasant smells (catbox, trash, etc) that I didn’t notice. After another year or so, I had enough mental energy to feel semi-confident that I had lost taste and smell. But was it related to mTBI? It must be, but no one ever talked about it. I didn’t talk about it. And, for whatever reason – my limited processing ability most likely – it never occurred to me to ask a doctor about it.

Until two months ago – more than four years since my first mTBI – when I finally ask someone who might help me. And she says there is nothing that can be done.

5_čutovtoo

There is bitterness, knowing something loved and valued is not coming back. Sadness. Loss. Depression haunted me for more than a month. And now, I’m not really over it – I expect I won’t ever get over it – but I don’t think about it most of the time. Until I do. It comes upon me when I’m holding Mary in my arms and I realize I can’t catch her scent. Or sniffing a beautifully bubbling sauce and getting… nothing. Doing my best to taste a well made meal, focusing with all my mind, and knowing I would have tasted so many more notes a decade ago. There is nothing that is going to make that okay.

It’s strange what a difference it makes to me, knowing something is gone for good versus having hope it will return. I mean, functionally, in reality, it’s all still gone. I am impaired. I have lacks. My memory is “severely impaired” per the latest neuropsych testing. I still need help figuring out my meals for the week. I have no tolerance for stress or difficult emotions. That has been true for more than four years now. Yet I hope, I expect it will get better.

And things do improve just a bit, just often enough for me to believe that they can still be different, can still improve. But, apparently, those improvements will never include my sense of smell or taste.

This experience got me to thinking – how much have I truly, irrevocably lost from this injury? What can I say – FOR SURE – I can’t or won’t be able to do? What am I confident has been eliminated from my life for good?

After considering it a while, I realized – what I have permanently lost is a very short list.

  • Time. I can’t get back these years I’m spending on healing. The time I am spending limited and impaired, just able to eek out a life for myself, isn’t coming back. It can’t be regained or re-spent later. It is gone, forever.
  • Roller derby. Also, any contact sport. It’s just not worth the risk.
  • Smell and Taste. I was just told this is gone for good, but I’m not 100% sure of the declaration. I’d like to investigate, read scientific papers, see an ear-nose-throat specialist, discover if I can make it different. My old self would have had plenty of energy for such investigations, but I don’t. So, I’ll stick with the assumption my neurologist is correct.

A pretty short list, considering the amount my life has changed from mTBI and Post Concussion Syndrome.

Since my injury, I have also experienced a seemingly endless stream of difficult emotions, pain, and devastating blows to my ego and pride. I have not included these above because – news flash – they can heal. In fact, they will heal as long as I keep living. Self worth, self esteem, goals, dreams – these are all renewable resources.

Everything else not on the list above, I still hope will return. As time goes on and they haven’t, it becomes much less likely they will return. But it is possible.

It is possible I will work for money again. Hell, that I’ll even work full time as an Environmental Scientist, that I will continue on my career path.

It is possible I will someday handle conflict, stress, and ambiguity with ease. Not crumple into a heap. Not get overwhelmed. I’ll just be able to deal, like adults deal. Perhaps better than some adults deal. Casually. Like it was normal.

It is possible my memory will return and that my energy will skyrocket to previous levels. It is possible some day I’ll be able to make goals, to aim high, and actually succeed. It is possible I will no longer get overstimulated, and be able to deal with fluorescent lights and computer screens with equal casual ease.

Yes, it could happen. I have hope that it will happen. And no doctor has ever – EVER – told me it won’t. So I continue to have hope as the years pass.

How many years will pass before I give up hoping these abilities, these skills will return? An endless number, the rest of my life. I don’t ever intend to stop expecting my abilities to improve.

Yet, at the same time, I am not in denial about my life. I have this small portion of energy, I have this much money, and time stretches endlessly before me (except when it seems to disappear in a rush). I live within my means – my energy means, my mental means, my financial means. And I accept I am where I am. So, having hope hasn’t made me delude myself about my now.

Hope just allows me to delude myself about my future. Not in making choices about my immediate future, or my soon future. No. But it allows me to delude myself about the ultimate trajectory of my life. It keeps that small possibility alive that somehow, some day, something inside me that was broken might heal, life will shift, and I will be able to continue on my way. Just another person. Healed. Able. Whole.

Posted in Uncategorized | 1 Comment

Helmeted

I bought a new helmet three months before I was injured. I’m glad I did. I never particularly liked that new helmet, but the purchase saved me having to wonder – did my concussion and subsequent post concussion syndrome happen because I was wearing a five year old helmet? One less thing to second guess myself about, one less thing to wonder.

As the months and years have passed, though, I do sometimes question that decision. I skated and played roller derby for five years. I had one probable concussion early in my career. It happened in my second bout ever (note to self: don’t let an experienced competitor goad me into doing anything rash again). The result? Basically, I had a bad headache for three weeks. That’s it. No impairment, no problem, and the headache went away completely. That one head injury happened early on. The rest of the time, all those years, I was fine. All the bouts, all the practices, all the scrimmages… and I didn’t hurt my brain.

I was hit a lot. I fell a lot. I bounced my head on the concrete a number of times. I was hit in the head occasionally – head butts, an accidental fist to the eye, a skate knocking against my helmet in a pileup. It is simply part of the game. All of that, and no concussions.

Roller derby. A sport that deserves a really good helmet.

During almost all of my roller derby tenure, I wore a Triple 8 Sweatsaver helmet. This is the classic roller derby helmet, the round ball dome helmet that is iconic to the sport. It has a hard smooth exterior, and an interior padded with about an inch of absorbent cushioning material. It lasted. I replaced the lining completely twice, washed the inside padding regularly, and decorated it like most skaters decorated their helmet at that time. With stickers. Lots of stickers.

32231_404053150674_3355440_n.jpg

Me and my helmet in my first year.

When I finally decided to buy a new helmet, I looked around at my options. In truth, vanity guided me somewhat. I didn’t like how hockey helmets looked – nor their price point – so I wanted to stick with the traditional derby helmet look. I knew I wanted to get a quality helmet, though, one that would protect me. At that time, about five years ago, the Triple 8 Dual Certified helmet had just come on the market and I snatched that up. I figured more certifications equaled more safety. Yay, right?

I was sad to see my Sweatsaver helmet go. One, I don’t like change. Two, in the name of safety, the new helmet was hard inside. I mean, there was a thin layer of padding – maybe 1/4” – to help with the comfort, but it was nothing like the plush hilton of comfort I was use to from my Sweatsaver helmet.

Another unexpected effect of the helmet change was sweat. An uncomfortable, inconvenient amount of sweat. Sweat in my eyes, running down my face, dripping off my nose. Ugh. My previous helmet was called Sweatsaver for a reason, and I very much missed it’s absorbent properties. With some tolerance and a month or two, I finally adjusted. It’s safer, right? Worth the inconvenience.

That’s the thing that gets me, now. I thought it was safer. It definitely had more certifications. It was definitely newer, and therefore less likely to be compromised in some small unnoticeable way. It looked normal, too, like my previous helmet, and I covered it with a whole new theme of stickers quite happliy.

dykot(2)

My helmet had a little more bling the second time around. That’s me in the green mohawk.

But the truth is, the reality is, that damn helmet didn’t protect me from concussion. Not at all.

It wasn’t until after I was injured, way after I was injured – and so actually really cared – that I learned that no helmet has been proven to help prevent concussion. The purpose of a helmet is not to prevent concussion. Not at all. Not even a little bit. The purpose of a helmet is to keep your head from breaking open like a raw egg dropped on the sidewalk. It is to prevent skull fractures and severe trauma (read, squishing) to the brain. It does not prevent the brain from being shaken a bit.

And here’s the thing. I think my new, pretty, dual certified helmet might be why I got my concussion. That hard shelled, unpadded thing might be why that time, the first time I got a really good knock on the head in my new helmet, I got a concussion. Because there was no longer an inch of foam padding around my head like there had been the first 5 years of skating. Perhaps that foam padding would have slowed the impact of my skull against the side of helmet just a tad, just enough, to keep me from concussion. Instead, all my head had to knock against was the inside of that barely-padded hard shelled helmet as I hit against a hard concrete surface.

I wonder. I really wonder if I had kept my old helmet, I would have had such a serious concussion. I wonder if instead of a life-changing injury, perhaps I would have just had a headache for a few weeks, or perhaps even nothing. Instead of my derby career ending, maybe I would have jumped up from that hit, like I had jumped up hundreds and thousands of times before, and just kept skating.

I wonder.

Can’t know. I will never know. Heck, if my old helmet would have really protected me better I never would have noticed. That is the funny thing about safety equipment. The whole point is to avoid the negative, to keep the bad thing from happening. We don’t notice when safety equipment works. And it is working all the time. We only notice when safety equipment doesn’t work.

I second guess myself a bit – mostly about the helmet. A bit about whether I should have gone to the scrimmage or not. Mary and I had just gotten back from a quick trip to Conneticut the day before for a funeral, so I was dog tired. Maybe that effected my reflexes. I also wonder whether my tumultuous conflicts with Mary over the previous several months – because we had just moved in together, and it was a rough transition – might have effected my mental flexibility and recovery. But that’s about it. That’s all the wondering I have.

Really, at the end of the day, it doesn’t matter. I am injured. I am impaired. What am I going to do now, today, to manage that? What am I going to do this week, this month, to help make it different? That’s all that really matters. Now.

Posted in Uncategorized | 1 Comment