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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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Tardy

As I sit at the stop light, I check the time and calculate exactly how late I will be. Probably around 3 minutes, definitely less than 5. In the past, I would have be wound tight as a drum because I hated being late. Loathed. Deeply disliked. Pre-injury, I found it embarrassing to my core. I found it rude and a personal insult to the people I was meeting. Being late broke a boundary of basic decency that I moved heaven and earth to respect.

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That didn’t mean I had to be early. No. It was simply vital I not be late. Arriving a few minutes before the appointed time was enough to maintain my dignity. I have never had the dedication of my friend Blazey, who without fail will arrive at least 10 minutes before the agreed upon meeting time. She, my fellow Virgo, understands the importance of being punctual.

In the past if I realized I was going to be late, I tried to make it better. I’d quickly find the person’s number and call or text them. I’d speed. I’d hurry. I’d cut out as many non-essential actions as possible, just to narrow or eliminate the margin of my lateness. Every moment from the time I realized I would be late to when I arrived at my destination, I would be full of anxiety, my body tight, my mind obsessed with my lateness.

All that angst changed when I was injured. Actually, no, it didn’t changed. My ability to track time and meet deadlines and show up reliably changed. I continued to feel horrible about being late. I tormented myself with recriminations about not following through, about canceling plans, about not showing up when and where I said I would. Gods that was hard on my soul. Tardiness and unreliability undercut my basic pride in who I was and how I functioned.

This was yet another instance where mTBI changed something that I thought was unchangeable. That first injury in 2014 changed something that was at the foundation of “who I am” or, rather, “who I think I am”. I really, truly and completely thought my timeliness was at the foundation of my soul, a virtue that I had been imbued with at the time my spirit was created.

Turns out, it was actually a set of brain functions that worked particularly well. A tendency perhaps, a predilection that I had fostered into a strength. A concrete infrastructure in my brain that was not and is not the same as my soul. And, as a concrete set of structures, something that could be broken. Who knew… who knew I could be broken in that way.

Finally accepting my altered time management abilities has been a hard transition. After months and years of tormenting myself, cursing and berating myself, and generally feeling like shit, I started to accept that this was the new me. What else could I do? It sure the hell wasn’t a consensual change, but evidence kept mounting that being on time was no longer a natural skill. Eventually I had to acknowledge this new embarrassing habit of tardiness wasn’t going to go away, and accept that wanting it to be different wasn’t going to make it different.

After my second mTBI in 2016… well, I just kinda gave up on expecting it to be different. There was no more guessing what I was going to be able to do. There was no more being that reliable person, the steady one who could be counted on to always follow through. No, that was no longer me.

So, today, as I run a little late and face the fact I will be late, giant anxiety no longer twists my insides. I’m a bit irritated. A little frustrated. But I don’t take it personally. As I hope all those people I am a bit late in meeting don’t take it personally. Being tardy no longer defines me, my sense of self, nor my day.

And I want you to know – I have implemented strategies to help with my tardiness. Writing things down. Planning an extra 15 minutes to get anywhere. Doing my best to keep on track, to not get distracted or lost in another project when I have to be somewhere during the same half of the day. But even with that deliberate effort, even with that extra 15 minutes of transportation time… I still end up running out the door 5 minutes late. I’m not sure why. I really am just not sure why.

And once I arrive I need recovery time, let’s not forget that. The recoup time I need after driving adds to my tardiness. I arrived 10 minutes late to the Pride Center potluck last week (not sure why). After I parked, I needed to rest. I wasn’t particularly tired (thanks caffeine), but I’ve learned to wait until my head stops buzzing before moving on to the next task. It also takes some time – sometimes a few minutes, sometimes 20 minutes – for my brain to catch up to the fact that I’m switching activities. To realize that I am no longer driving, and that my intent is to socialize… preferably well. I need a minute. My brain needs a minute. Or, in the case of that night, 10 minutes before I was ready to speak to another human being. Another variable, another unpredictable requirement thanks to brain injury.

Maybe I need to start adding 30 extra minutes to my drive time.

I use to have a precise and detailed sense of time, and now I simply don’t. There aren’t enough spoons (of energy) available for me to be aware of every moment passing. My brain doesn’t have the energy to keep track of time AND take care of my basic daily functioning. That is the best explanation I can give as to why time seems like an amorphous and unreliable thing to me now, passing in fits and starts, jumping about without me noticing.

These days, I have accepted my periodic tardiness. Once I took off my blinders of only-timeliness-is-possible and looked around, I realized I was not alone. Many people struggle to be on time. Some do not. And the great thing is there is space in the world for everyone – from those that tend to be a little late, people who strive to be right on time, the chronically late, and those individuals who find peace in arriving 15 minutes early. I have realized that this is just one more way that brain injury have taken me from one extreme (very timely) and plopped me down somewhere in the middle of humanity (generally timely with a struggle). So be it. Most people will understand.

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The Hottest Day of the Year

The wind gently brushes against my cheek as I walk along the edge of the road. It doesn’t scour, it doesn’t numb, it doesn’t hurt. Instead of wearing a coat, scarf and stocking cap, I stroll along in a ball cap and thermal top. The silence that I had grown use to over the past six months is broken now by birdsong. At least three different types of birds are singing their hearts out nearby. I walk along comfortably, thoughtlessly,  not needing to check every step for traction and safety.

Spring is here. It arrived three days ago precisely. Really. One day, it was in the low 30s, gray and sunless, and mini snowballs fell from the sky. The next day, the sky was clear, the sun was shining strongly, and it reached a balmy 45 degrees Fahrenheit. The next two days have only made it warmer, yesterday reaching 55F, today reaching 65F, and all of it crazily sunny and clear. I can say, with confidence, that today is the hottest day of the year… so far.

Now that spring has so clearly arrived, I would like to take a moment to thank winter for all it has given me. I need winter. I need long, solid, winter-like winters. At least I did this year. Those of you who live where the snow doesn’t fall can’t understand the peace, the restfulness, that comes with knowing it is time to slow down and simply be for a while. That just as the natural world beds down and goes to sleep for weeks and months, so too it is time to rest and dream new dreams. To turn introspective, to re-imagine what is possible, and plan and re-plan what the spring and summer and fall will hold.

So restful. And so peaceful, for me. I really needed that. Thank you winter.

Today, on the hottest day of the year, Mary and I planted the first quadrant of our garden.

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A good beginning this spring – the first part of the garden, planted. Photo courtesy of Mary Zompetti

Mary did most of the bed preparation, I added the compost, and it was her idea to add the pleasing rock design. I had planted the peas at the edge of the quadrant a week earlier.  It is a healthy, vibrant, nutrient-rich garden now. Looking at it today reminds me of how it was created.

I dug that garden shovelful by shovelful, alone, the fall that we first moved into our house. It was not a sane undertaking. It was not a good idea. But I was being torn apart inside by my failure, my failure to recover from my brain injury (less than a year old, at that time), my failure to meet my work’s expectations, my failure to remember what someone said a moment ago. Failure. So I dug a garden. I started in the center, and I spiraled outward. Each shovelful, I removed the grass and shook the soil from the roots. I dug out big stones and small stone and medium stones – Vermont has a LOT of stones. I turned the soil over, and then I moved on to the next shovelful. Through September and October, day after day, and until the end of a very cold and wet November, I dug.

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A small portion of the many large rocks I should not have been moving while recovering from an mTBI

And somehow, we ended up with a circular garden that is 25 feet in diameter, and we’ve been enjoying it ever since. I succeeded, there. In truth, until today, I hadn’t really thought much about it since I finished that project. I guess I’m not surprised. Life is so moment to moment after mTBI. There aren’t enough mental resources to go around, so everything that isn’t this exact moment has to be let go of in order to function in this moment. The successfully dug garden just floated out of my mind, probably within a few days, maybe within hours, to make space for the next thought, the next struggle, the next moment in my life.

If I didn’t have this garden, this physical reminder of that project, I doubt I would have remembered it at all. Sigh.

Anyway, back to the hottest day of the year! It’s early in the season, so it is all about the greens. I planted peas last week, and today we decided where the broccoli starts would go, and we planted seeds of kale, swiss chard, and mescalin mix. Yum.

It was a lot of work. I hauled four wheelbarrow loads of compost, with appropriate breaks in between each trip. I did a bit of hoeing, and I sat down and drank water regularly. Regardless, I reached zombie-hood by 3 pm. Not a shock anymore, but damn irritating. In contrast to past recovery time frames, today I was able to rest for an hour and return to the task at hand. During the rest, I couldn’t do much more than stare blankly and try to stay awake (it was too late for a nap), but slowly some clarity and thought returned. After my rest, we were able to return to the garden and plant the rest of the seeds, finishing the day’s tasks. So – success. A slow process, irritating, definitely not going to impress anyone with my speed – but I accomplished my goal, with Mary’s enthusiastic and energetic participation.

It’s funny. Three and a half years ago, in the throws of unbearable headaches, continuous fog and confusion, and rampant over-stimulation, I dug a giant garden. It’s beautiful, and I’m glad I did, but damn I wouldn’t do that today. At least, not under the conditions I was experiencing then. I was in a hellish place, where every moment of life hurt, both physically and emotionally. Since just existing hurt and was overwhelming – because my expectations and the demands in my life hadn’t adjusted to my new level of ability – there was no reason to avoid straining myself. I would be just as miserable either way, so why not, right? Since I was so chronically overdrawn, had no hope of finding a way to make the pain stop, why not add $50,000 to a $1,000,000 debt? I don’t expect it did me too much lasting harm (when compared to other giant energy drains) and it is probably one of the reasons I managed to survive that dark time. And look, I have something good to show for it.

Contrary to what made sense in that time, such an over-expenditure of energy in my current life makes no sense. Now, living does not mean being in pain. My headache that lasted 1 1/2 years isn’t a daily thing anymore, and it is usually muted and manageable when it revisits. I am not chronically overdrawn. The world’s expectations of me, and my abilities, usually align. I have hit bottom, and I am slowly, slowly floating back to the surface. After messing up so many times, setting myself back in so many ways, aggravating the misery of my mTBI — I’m not doing that again. At least, not for anything less than life and death circumstances. The pain, the lost time, the recovery curve is just not worth it to me. It really isn’t. Pain is something I can avoid, now… so I do, as any being would given the choice.

So, today, I worked with Mary to plant a quarter of the garden. If I was able bodied, we probably would have prepared half the garden, and done other outside tasks, too. Mary had the energy and motivation for it. But, I’m not, and I didn’t. I am grateful for the quarter garden planted without much aggravation of symptoms or being set back. I am grateful for what I can do. The small pieces I can accomplish. The life I can lead. And, I am grateful I am not in pain anymore, that every moment of my awareness isn’t flooded with pain and confusion. I am grateful to be alive, to see this beautiful spring before me. Thank you Goddess, for helping me make it through.

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Finding the Sweet Spot of Functioning [TBI Rockstars VIDEO]

The TBI Rockstars strike again! Brie and I tackle the challenges of finding the sweet spot of functioning while recovering from an mTBI.

Everyone I know with an mTBI struggles to find this balance. Doing enough to stay sane, but not doing so much that you increase your impairment and crash your life plans. I have struggled finding this delicate balance for the past four years. Some days I win, some days I lose, and some days I’m not quite sure what happened. After overestimating my ability over and over again for years, I have finally found a relatively pleasant, relatively stable place to live. It is a good balance for me, of doing and not doing.

Is there some magical solution? No. There is no one answer for everyone. Brain injury is too individual, too non-linear for one thing to be the answer. Brie and I, however, do offer some excellent suggestions in this video. Suggestions grounded in years of struggling, years of trying to live our lives while also allowing space for our new limitations.

Check out our latest video here:

If, for some reason, the image of Brie and I doesn’t appear in your browser, follow this link to get to our video: https://www.youtube.com/watch?v=7k9aNFjiA54

Note for noise sensitive people: This video has background traffic noise. Brie and I enjoyed a brief sunny moment outside, but I’m near a major road. Don’t use earbuds to listen, as that just emphasizes the traffic sounds. Thanks for watching!

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The Little Things

I fear there is a simple solution, some tiny thing that I am overlooking. I fear that I am suffering needlessly, that there is an answer just a step away. I fear to spend years and years impaired, and then have someone point out one little thing I could have done differently to make it all better. What am I missing? Is it true that if I just did X, took Y, and acted Z, the magic bullet could be administered and I could just go on my merry way?

My hope nags me sometimes, in the background. It taps at the edges of my mind telling me to find it, find the answer. That this complex, difficult problem might actually have a solution.

Because all of us have heard stories of people finding “the answer” – sometimes directly from the person themselves. I did it, and now I’m better! This is it, this is the treatment to do! If you just do X, you won’t have those problems anymore!

And it’s hard not to get caught up in their belief and hope, especially when I want it so much to be true. Yet, with brain injury particularly, I have found that improvement has a price tag, and usually a hefty one. Should I throw my money at the “brain injury problem”? Or should I ignore what the person is saying because they are selling a product?

My desire to protect myself means that I err on the side of no, of not spending the money. A sea of possible treatments – none approved by the FDA or covered by insurance – float before my eyes. Brain mapping. Low Energy Neurofeedback (LENS). Brain balancing. Homeopathy. BEMER products. Precision chiropractic. Pulsed electromagnetic fields. Lasers. No longer eating certain things. Definitely eating certain things. This pill. That pill.  All the pills!

Since my brain injury, I have only added one prescription medication to my daily regime – thyroid replacement. Before my mTBIs, no issue. After the head bonk, I developed a deficiency. It was all worked out several years ago, my numbers brought within the norms, and I haven’t thought much about it since. This past February, I got my blood tested as part of my annual exam – cholesterol (hello 40s!), blood sugar, and thyroid. Results came back showing low thyroid levels, so my doctor increased my dose by 50%.

Will you look at that. Small thing… life changing… missed it. Huh.

Within a week or so of the new dose, I started experiencing subtle effects. Improvements. More energy, mostly. I have been able to socialize longer. Go more places. Do more things. Think more thoughts. I still hit a wall, get overwhelmed or confused, but it takes longer. And my recovery time has become shorter.

It is almost unnoticeable when life becomes easier. It’s subtle. Life simply flows along the same path as before, but just without the constant impediments of brain injury. Six months ago, as I walked through my day, I’d run into one roadblock after another – a brick wall, a dense thicket of brush, a cliff – all of which required attention, all of which required conquering, finding a way around it, or giving up. An extremely draining reality.

I no longer have to compensate every moment for my impairments. Or, maybe that’s not right. I still need to compensate, big picture, but the little daily continuous compensations are more muted. For example, every time I use the computer, I don’t need to immediately switch the white and black settings. I can handle just looking at a regular computer screen, at least for a short while. It no longer feels like a monster trying to melt my brain.

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My usual computer screen these last four years. If you find computer use draining, try switching the black and white on your computer – so much less stimulating. For PCs, look in the ease of access section under high contrast. I switch between normal and high contrast using shift-alt-print screen.

Just one less thing I need to constantly be on guard for. The evil florescent lights still bother me, and the aggressive casual noise around me… but again, their attacks are blunted, their intrusion more like a rude stranger than a serial killer.

This past week, another blood test. My numbers haven’t budged. Now I’m on a 100% dose increase from a few months ago.

A small change, a simple pill a day, and I am experiencing improvements in my life. There was no way, six months ago, I could have survived last week. Passover, then a two day trip with museum and socializing. Return home to spend a day intensely focused on writing, and actually succeeding in choosing a topic, writing, editing, posting and advertising a blog post all in one day. A few days later, socialize with a friend for 1 1/2 hours, then go out that evening to an (admittedly very mellow) comedy show and not have the driving to and from be “too much”. Who the fuck is this? Who the hell is it that can do all of these things?

Apparently, me, Charlie. Apparently I can.

All because of a small pill. How weird is that?

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My smallest daily pill. Seen here with my other supplements – fish oil, flax seed oil, multivitamin, thyroid replacement, and phosphatidyl choline

Thyroid regulation is a basic and not very expensive fix. One of the few basic and inexpensive fixes out there for mTBI recovery. If you don’t monitor your thyroid levels regularly, my mTBI friends, I suggest you start. I will not make that mistake again.

This little discovery has also motivated me to finally call about a sleep study. Since my first mTBI, sleep is no longer easy and reliable. I was once one of those (in retrospect very annoying) people who slept easily, deeply, and for however long I wanted. Not anymore. Now, any noise, any light or slight movement can wake me up at any time. I have used sleep hygiene techniques, melatonin, and herbal tea to bring myself back to a consistently good night’s sleep. However, my neurologist tells me that “sleep disordered breathing may be an issue after TBI that can contribute to cognitive problems”. Well, I’m going to check that shit out and fix it if it’s true. Wouldn’t it be wonderful/ironic/horrible if a lot of my cognitive deficiencies are just from a sleep issue?

I continue to welcome the Universe to make my life better.

So here I am putting along, just a bit more functional now, a bit less impaired. I have learned from my mistakes. I won’t let the little things, the easy fixes, sneak by me again. I might not be willing to spend thousands of dollars on an unproven treatment, but I will definitely take care of what is in my control. Checking my thyroid. Getting the sleep study.  My nature is to focus on the basics, the routines, the slow and long-term solutions. Does that mean I might miss some answer, some solution to my mTBI recovery problems? Yes. But it also means that I know – I know – I am giving everything I possibly can to this moment, this day, this life.

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