The Addiction of Success

I sigh in satisfaction at the tiny grass shoots emerging from the soil. I planted those. I added the compost and mixed it with the existing soil. I bought the bag of four types of grass seed that would survive regular foot traffic. I hand seeded the area, laying down a thick layer of seed, and then tamped it down to improve soil contact and secure the seed to the site. I watered it, carefully, completely, soaking the little seeds so they would germinate. And now, I have the beginning, the very beginning, of a new grassy area.

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Me, I did that. And, if all goes well, by the fall the grassy area will be established and survive the winter. By next year, I hope to have an area of lawn I don’t have to think about, and that is simply part of our entry path. Another problem solved.

Satisfaction. I feel satisfaction from this success. Many steps taken. Lots of patience. Consistent attention. And I did it all, by myself. A project identified by me, planned by me, and accomplished by me.

Concrete tasks, like this grass growing project, are one of my favorite types of activity.  I can do it myself, at my own speed, and it creates a real, physical change in the world that I can observe.  Knowing I changed the world, even in such a small way, helps me know I am here, that I exist and that I matter. In the winter, I proved my worth to myself every day by crocheting and making a blanket (check out my blog about it here: My Granny Square Journey). Now, as my abilities increase and summer has arrived, I do small projects around my home.

Success. Completion. Competence.  Feeling independent and “able”, when so little in my life makes me feel that way anymore.  How priceless.  And, how addictive.  We humans have an ingrained tendency to pursue pleasure and avoid pain. It’s natural. It is, really, what any living being does.  And, I have recently found myself pursing the pleasure of task completion to the exclusion of almost everything else in my life.

Tasks are so concrete, so real, with a beginning and an end.  I find that concrete things, physical actions, are the easiest thing for me to hold on to since my mTBI.  They stick in my brain better.  While ideas or feelings or relationships change with every passing moment, and my ability to grasp and remember those things change with every hour – physical things stay physical things.  Wash the dishes.  Plant seeds.  Get the mail.  Those are simple, concrete tasks that make sense regardless of my mental acuity.  Dishes are always dishes.  The mail is always in the same place.  Seeds always need to be put in the ground to grow.  These concrete things don’t change.  When so much of my perception of the world around me changes without warning, concrete actions provide a certain comfort and security.

I have struggled with tasks since my first mTBI in January 2014.  Deeply, horribly, continually struggled.  Fatigue and mental impairment meant I was unable to keep functioning in my life as a normal, independent adult.  One that works for money, that manages her own affairs.  Heck, one that can reliably drive a car.  I tried to keep being that person, to push through – for years – and I very much failed, over and over again.

So it’s no wonder I feel so great when I succeed, when I complete a task now.  And when accomplishing something concrete is such a challenge, and it is such a momentus occasion worthy of celebration when it happens, why wouldn’t I spend all my energy on making concrete things happen? I like to succeed as much as anyone. When there are so few ways I can make my mark on the world from this small fish bowl of post-mTBI life, why wouldn’t I make as many marks as possible?

Well, one reason is this – I have only so much energy, so each “spoon” of energy I spend on concrete tasks is a spoon of energy I don’t have for other things (for more on energy allocation, check out my post and video here:  Energy Limitations from Chronic Fatigue – Explaining Brain Injury (VIDEO)). By choosing to tend a small patch of grass on our front walk, I choose not to spend that energy in other ways. Other ways that would fulfill me, that would help my loneliness and isolation, such as reaching out to other people. Socializing. Making friends. Connecting more deeply with friends I already have. Creating a community. Hooking into community that already exists. Basically, doing anything that involves another person in my life in a meaningful way, that is not Mary.

I am lonely, make no mistake.  Deeply lonely.  And, for whatever reason, texting or email just doesn’t hit the mark.  They don’t help.  Those things don’t feed that part of me that needs feeding.  I’m not sure if that is my age or my post-mTBI non-electronic lifestyle, but there it is.  So I need to talk to people to feel connected, in person or on the phone.

But that’s hard. That was hard for me before I was injured. Now, it’s triple hard. My abilities have changed. Things I was amazing or exceptional at before – such as concrete tasks that require consistent, independent work – I’m adequate and sometimes good at. Things that were a struggle for me or that I was just starting to master – such as making friends, connecting with other people, creating community – I slipped from adequate to abismal and incompetent.

To be fair to myself, it has only been in the last few months that I have been able to consistently follow conversations. Being mentally present takes a lot of energy. Earlier in my healing process, I was done in 5 minutes. Now, I can – sometimes – have a 30 minute conversation. On really good days, when I prepare and rest, I can chat for 45 minutes or an hour. Like, participate, stay present, really connect.  All those things most people take for granted. I loved intimate, deep, long engaging conversations before I was injured.  Now, I’m just happy to chat for 20 minutes.  Imagine not being able to carry on a proper conversation for 3 1/2 years. Imagine how deeply lonely and isolated you’d be. Yah. That’s me.

Welcome to my life.

Yet, I take responsibility for it. I’m old enough to understand that some of it is self-imposed. Yes, my brain injury has made things more difficult.  Impaired mental clarity, struggles with shifting my attention from one topic to another, inability to “hear” someone in a crowded room, fatigue that makes it all fuzz out – those realities make it more challenging. Yet, also, my pre-injury hangups are still there. My awkwardness, loner tendencies, shyness, and old instinctual patterns of mistrust and suspicion all make it hard for me to connect.  Somehow, after all these years, I still don’t have a feel for what normal friendship looks like or how to make friends.  I guess I missed those lessons in school, or deliberately skipped them.

So, it is much easier for my brain to groove alone the same paths it has for the last several mTBI years, and for years before that – focus on this task, and the next task, and the next.  But, I know that isn’t good for me, or I guess I could say I am re-remembering that it isn’t good for me.  Before I was injured, I had just started challenging myself to make friends, to evolve and grow in that direction.  Brain injury nipped that activity in the bud, but I guess 3 1/2 years later it’s time to start giving it a real try again.

Even if I do tasks all the time, forever, there will always be more tasks. Always one more widget to tend to.  Even when I had all the energy in the world, it was easy to find a reason this thing or that thing needed to be done before I could do x, y, z.  My base tendency is to miss the forest of my life by focusing on the trees.  It’s time to stop doing that.  What is important – what makes a difference in the world – is connecting, writing, reaching out, and being part of something. I want to be part of something. A community. Of interesting people, who live interesting lives. That’s what I want. At least I have that clear in my mind now. With time, I will bring that reality into existence for myself. Somehow. Someway.

 

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Appreciating Cognitive Improvement after mTBI (The Swiss Chard Affair)

Summer has finally arrived in Vermont!  The sun is shining, temperatures are regularly in the 70s and above, and green is bursting from ever corner of the land.  Happily, gardening is in full swing, too.  Our tomatoes, squash, and cucumbers are all growing strongly, and I harvested my first swiss chard this past weekend.

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One of two basketfuls of chard this weekend.  My favorite green – Yum!

Chard is one of my favorite crops.  Not only is it tasty and good for me, it reminds me of my childhood.  My mom is a gardener, too.  And while spinach didn’t grow well where I grew up, swiss chard grew quickly and produced enough to feed our family of five on a regular basis.

Last year, Mary and I tried something new.  We bought a small, used freezer off Front Porch Forum for $50, and began putting aside our extra garden produce to enjoy in the winter. Winter is long here – a solid 6 months – and having a small taste of summer each week helps keeps our spirits up.

Freezing is so much easier than canning.  SO MUCH easier.  There is a minimal amount of processing beforehand to stop the aging process, then you pop stuff into a container and freeze it.  Done.  It is also a great way to preserve prepared items like pesto or tomato sauce.  Instead of dealing with the boil bath canning process, just pop it in a quart jar, put the lid on, and freeze it.  Brilliant.  Perfect for a household where one person is chronically overextended and the other is chronically fatigued.

Last year, I managed to put aside 14 squares of chard.  Each square is made from a gallon-sized ziploc bag full of chard that is blanched and frozen.  The square conveniently fit into our steamer, and is enough for four servings.

In 2016, putting aside chard was one of the things I “did”.  It was one of those big tasks that I centered my day around, that I had to set aside everything else to make happen.  I  could count on being exhausted and foggy afterwards.  I remember the blanching process being hectic – multiple things going on at once, and not being able to keep up.  I remember feeling overwhelmed.  I remember the multiple burns and scalds.  I remember, in short, that it was quite challenging.

Incidently, I always processed the chard when I was home alone (I don’t remember this, Mary told me).  That meant Mary didn’t see how I struggled.  And I didn’t talk about it.  For me, having to tell someone about my difficulties often feels worse than having the difficulty in the first place.  And, honestly, I couldn’t explain why prepping the chard was so difficult.  I couldn’t point to a single action that was a problem, or a particular issue I was having.  I didn’t understand myself why it was so difficult – how could I explain it to someone else?

That’s the brain injury challenge, isn’t it?  Explaining why something doesn’t make sense, or is difficult, when I myself don’t know why it is that way.  There is no reason, there is nothing wrong – my brain just doesn’t frikkin work.  The only way the problem can be solved is if you use your healthy brain, determine the logical steps necessary, and tell me.  Then write them down.  Then help me step by step through the process.  About thirty times.  Then I’ll probably be okay to do it on my own.  But maybe not.  You’ll need to check on me regularly to make sure I haven’t forgotten, lost the list, or otherwise gone off track.

But I digress.

Luckily, things change.  A year stands between who I am now and who I was last year, freezing chard.  I often only realize how impaired I am after the moment has passed, after some time has allowed me to heal, and then I return to the same task again.

My improvement shone clearly this past weekend as I prepped chard for freezing.  The plants had been generous, and I had five gallon-sized bags full of chard.  Mary and I would only eat one this week, so I decided to freeze the other four.

Here I will step in with one of the benefits of brain injury.  I remember, and also don’t remember, how I do something.  Although I remember the general sense of how to blanch and freeze chard, I don’t have the process I used last year enblazened on my brain as “the only right and logical way to do things”.  In fact, when I do a task, it feels like the first time.  That’s part of why it takes me a bit longer – I have to decide how I will do something each time I do it, it isn’t immediately available from my memory.

So, the 2017 swiss chard prep and freezing.  The process is simple, really.  Chop the chard, put it in a cloth bag.  Place that bag in boiling water for 1-3 minutes (this is what blanching means).  Remove from the hot water, cool quickly.  Squeeze out excess water, place in a container and freeze. Done.

What a difference a year makes. What a difference.

Last year, I decided it would be most efficient to use two cloth bags.  I’d planned to prepare one while the other was boiling, then place that one in to boil while I cooled the first.  So efficient, so multitasky.  So completely, utterly impossible with a brain injury.

Clearly, in 2016 I was still making plans based on who I use to be.  I was making plans based on an efficiency and attention to detail that I haven’t had for about 3 1/2 years now.  How ridiculous.  I can’t keep track of two things at once.  Period.  And I definitely definitely can’t keep track of two things when there is pressure or a timeline.  That just isn’t possible for me.

Still, after a year, it isn’t possible for me.  But I know that now, and that makes all the difference.  I change my expectations.  I make different choices.  Instead of somehow trying to be efficient by moving two bags through a process synchonically, I only process one bag.  I can only keep track of one thing at a time, so I only try to do one thing at a time.  The end.

And it works.  The process went smoothly and efficiently.  Maybe it took me 30 minutes or so to process the four bags of chard.  Most importantly, I felt in control during the whole process.  By reducing what I was trying to keep track of to one item, I was able to keep track of said item and succeed.  Setting yourself up for success.  I recommend it.

As part of my expectation of efficiency last year, I also kept two pots of water boiling at the same time.  Why?  I’m not really sure.  That doesn’t make a lot of sense.  But that’s what I did.  Another reality of brain injury – doing things in a way that don’t make that much sense to a logical or mentally whole person.  This year, I realized I only needed one pot of boiling water, so that’s what I prepared.

Another reason I felt so rushed last year is the pressure I felt to get chard into the boiling water.  Ahhhh – the water is boiling!  I need to get something into it!  Immediately!

But, again, looking at it with the mental capacity I have now… that makes no sense.  I am in control of the pot of boiling water.  It is not in control of me.  After I remove the bag of blanched chard to cool, I can turn off the burner and shift the pot off the burner, so it stops boiling.  In five minutes, when I want it boiling again, I can just put it back on the burner and turn it on.  Simple.

But, of course, it isn’t with a brain injury.  I wasn’t able to mentally assess the situation and problem solve that little issue.  It was simply outside my ability to figure out I could turn off the burner if it bothered me that it was at a rolling boil.  Outside of my cognitive ability one year ago.  Possible, now.  Yay me.

One other minor adjustment had to be made.  I ran out of the container I usually use to freeze the chard to form – I only had two instead of four.  Last year, that would have been a serious road block.  My solution might have been I could only process two blocks of chard at a time.  Now, with my improved mental capacity, it only took me a few minutes of staring at our other plastic containers to figure out I could use another container and get the same result.  Again, duh.  And, again, impossible when impaired.

This year’s Swiss Chard Affair is a clear sign of my continuing healing.  That feels good.  At the same time, it is rather appalling to realized how impaired I was.  I expect I will be as appalled next year about how I do some task this year.  I can only hope to continue to heal.

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The Queendom freezer is already filling with 2017 goodies.  Top shelf is garlic scape pesto, basil pesto, and some chopped scapes.  Middle shelf is my four containers of chard.  Yay!

 

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No-Work Anniversary

I wake to the sound of rain pattering on the roof.  I just lay there a minute, savoring the feel of waking up in a warm comfortable bed.  Unhurried, I rise and dress.  Speaking to no one but the cats, I put on my reflective vest and amble along the road.  I walk comfortably – not rushing, not running.  Some days slower, some days faster.  I walk not because I have somewhere I need to be, or some fitness goal I’m trying to meet, but simply to get my body and mind up and going for the day.

After my daily exercise, I eat a breakfast of oatmeal with raisins and nuts.  As I eat, I flip through the local paper until I get to the jobs section.

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Employment opportunities in Vermont

I can’t seem to keep myself from scanning each employment opportunity, looking for one that fits my skills.  Usually, I don’t find anything.  Not even one thing that would use my education, or would play to my professional strengths.

Every week that I read through the 7 Days job section I realize how sweet my past job was, how specifically tailered it was to my strengths.  Highly technical, analytical, using a precise application of the law.  Independent.  Changable – something different every day – yet consistent in the scope of work required.  Minimal interactions with other people.  A combination of paperwork and hands-on activity.  My own office with a window.  Good pay for Vermont.  A state job and all that implies – stable, consistent raises, health insurance.

And a year ago today, that all ended.  June 6, 2016 was the last day I worked for money.  It has been a year since I had the job of a Military Environmental Analyst II.  An entire 365 days.  Funny how life works out sometimes.

Very funny.

I destroyed myself trying to keep that job.  From the moment of my first head injury, I pushed and stretched and struggled to keep that job and the identity that went with it.  And, heck, let’s be truthful – the independence and financial security that went with it, too.  I spent every scrap of energy trying to keep doing my job for 2 1/2 years, becoming less and less of who I was because my daily output of energy exceeded my daily input of energy.  So where did that energy come from to keep going?  My soul.  My spirit.  My life force.  I have no doubt that I shortened the years of my life spending myself so recklessly.  No doubt at all.

And, look, I ended up not being able to keep the job anyway, in the end.  I just stretched out and prolonged the inevitable change necessary to bring my life back into balance.  That change was to stop working.  Simple as that.  I just didn’t – and don’t – have the energy to work.  At least right now.

I still have the hope that I will work again, someday.  Some day is the foggy, distant future.  I know it won’t be in the next year, based on my slow recovery rate.  The year after that?  Or 2020?  I want to be realitic, yet hopeful.  That’s a hard balance to maintain.  I don’t want to fool myself, set unrealitic expectations and try to make myself be something I no longer am.  At the same time, I hope the future holds financial independence and – heck – even affluence.  I hope the future includes me having the energy and mental stamina to work 40 hours a week.  Or, even 30 hours.  Would I be okay with 20 hours?  Is 10 hours a week more realitic?  Can’t know.

How do I know I can’t work right now?  Well, let’s look at what consistutes a big day for me – say, like what I did yesterday.

I drove into town for a chiropractic appointment.  I had an hour appointment that included chatting with my provider.  I walked across the street afterwards and picked up three things at the store.  I drove a few blocks and returned some library books and picked some new ones.  And then drove home.  That was the meat of my day.  Later, after resting and HBOT, I made a simple dinner (from instructions) – tacos!  And that was all I had energy for yesterday.  Definitely no energy available for even an hour of working for money.

After fighting so hard to keep my job, it amazes me that I don’t miss it. I just don’t.  Working was so far outside my physical and mental ability for so long that when the responsibility of my job ended, it felt like a giant weight lifted from me.  I finally had the opportunity to create a life where I could be successful.  Where what I expected of myself, and what other people required of me, could balance with what I actually had to give.  Two and a half years after I was injured, I finally could reconstruct my life in a way that made sense and was realitic.  Thank the Gods.

Of course, it was a rough transition.  Hours of crying.  Fits of anger.  Depression.  Hopelessness.  Frustration.  Loss of self esteem.  Wandering the house alone every day, wondering what came next.

Eventually I figured it out.  Eventually I developed new routines, new rhythms for my life.  I found the balance that I had needed so long.  The space to rest and recover and actually, truly, heal.

And things finally started getting better, instead of continually getting worse as they had the previous 2 1/2 years.  Over the past year, I have slowly been healing.  Slowly.  Slooooowly.  But really healing.  I have developed a stable foundation for my life that will allow me to rebuild myself, and my abilities in a secure and real way.  I know my limits and live within them.  Until those limits change, and suddenly I can add one more thing to my routine, or handle a little bit more complex thinking, or drive just a little bit further.

I am improving.  All that is required now is patience.  And acceptance.  And not using a previous life’s standard to beat myself up or undermine my sense of accomplishment.

Most days, I can do it.  Most days, I’m fine.  Every once in a while, I remember that I was once a person who could work 40 hours a week, play roller derby, stay up late and get up early, and generally do whatever the heck I wanted to when I wanted to.  I think about that person sometimes, the person I was, and I miss her.  She’s still inside me, but that life is over for me.  Just like my last job of nine years is over for me.  I can’t go back.  There is no going back.  There is only going forward.

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How To Start A Hobby or, Executive Dysfunction

“You aren’t going to meet a stranger from craigslist at his house.  You aren’t.  It’s not safe.”  Mary tone is firm and insistent.  She has her serious expression on.  I can tell her sense of threat has been triggered and she won’t let this go until she feels everyone in the homepod is safe again (i.e. until I do what she wants).

I, for my part, have already made my decision.  I feel myself settle deeper into my choice.  I’m not available for negotiation.  I am an unmoveable rock, rooted firmly in the earth and mud.  “It’s not like that.  I’m just going over to look at his lot of leatherworking supplies.  He’s volunteered to show me how some of the handtools work.  The guy seems fine via email.  I’ll give you the address and contact you before and after.”

I know at this point it doesn’t matter what I say.  Mary has detected a threat, and she will pursue the matter until her sense of threat has been resolved.

“Why can’t he just haul it in his car and meet you at the park and ride like a normal person?”

“It’s too big to be hauling around casually.  The workspace is set up in his basement and I want to have a chunk of time to really look through the supplies without pressure.  There’s a lot there.”

“It’s in his basement?  Really?  You definitely aren’t going.”

“Yes, I am.  I already made the appointment.  End of discussion.”

It goes on from there.  This conflict isn’t because of my brain injury.  In fact, it’s possible because I am slowly healing and becoming more like myself.  I am (sometimes) able to remember and hold on to my own opinions, even in the face of anger or pressure.  That is a gift.

For most of the past three years I haven’t had the energy or will to fight.  Or we’d start fighting and I’d get confused and I wouldn’t remember what we were fighting about.  Not fun.  Sometime, having Mary angry or even unhappy felt so deeply threatening in my core, so wounding, that I would do anything to avoid it – including give in, give up, or let go of my own perspective and needs.  As my brain heals, as my spirit and sense of self heal, I am sometimes able to stand up for myself and my perspective again.  That feels good.

Yes, as Mary points out later in the argument, I would never meet a date for the first time at their house.  That’d just be stupid.  But, in very rare circumstances, I will meet someone from craigslist at their home.  Sometimes alone.  And that choice is not due to brain injury impairment, but my belief in my freedom.

Actually, freedom of movement is very important to me. I refuse to limit my movements just because I am female and a woman.  I refuse to live in a prison of “safety”, when we all know that women are in much more danger from people they know than from strangers.  I could go on about this a while, but it isn’t the purpose of my story.  Just accept that my decision to meet the craigslist guy alone and go to his basement is completely me, and not my brain injury.

That said, I am aware I am much weaker, more vulnerable, more easily confused than I have ever been, because of my mTBIs.  My focus, my awareness of things around me are spotty at best.  My ability to anticipate others actions and perceive their intent has suffered.  My physical strength has been undermined, and my aggressive spirit dimmed.  So I understand Mary’s concern.  And, I feel like I am together enough, at this moment in time, to be able to sense the guy’s energy and intent before entering his house.  That I can trust my judgement and perceptions.  That I can trust myself.

That’s another good feeling.  The feeling of being able to trust myself.  That is something that is slowly returning, too, as I heal.

But back to my story.  The fight continued along a predictable path.  I’m not budging.  Mary’s not budging.  But then she switches tactics.  Instead of pushing the safety button, she started to poke the money button.

“Why spend so much money on a hobby you haven’t even tried?  Doesn’t it make more sense to get cheap tools and supplies and try it before making such a big investment?” She says as she puruses the craigslist ad I had answered.

“I hate buying crappy tools.  What they make now are cheap compared to the tools made 50 years ago.  This guy is a lifetime leatherworker, so his tools are pretty amazing quality.”  I say with conviction.  I do hate wasting money on crappy tools; poor quality tools seem like a crime against nature.

Mary continues along the money vein for bit, and I listen.  Why do I want to make a big investment in a hobby I haven’t even tried?  I don’t have much money to spare.  Spending it on one thing, that I might not even like, doesn’t make any sense.

And then I consider the last few weeks, since I got the leatherworking bug.  My search for a local store, and then a search of books at the library.  Craigslist, then amazon and ebay.  So many choices.  Everyone online has an opinion about what I should get, what I need.  Dozens of tools for one simple craft.

Confusion quickly builds into being overwhelmed.  What do I need again?  Where’s the best place to buy? How much easier it is if I just get it all in one place, from someone who knows what they’re talking about.  Only one decision instead of dozens or hundreds of decisions. One guy’s collection, ready to go.

And that’s how I made the decision to pursue a several hundred dollar craigslist ad.  But really, as I reconsider it with Mary’s prompting, things came into a different focus.  When I look at the bigger picture, the purchase doesn’t make any sense. It just doesn’t.  So how about I don’t do it.

Mary seals the deal when she pulls up a leatherworking kit on ebay for $40.  Yes, it seems to have most of what I need.  Yah, the tool quality looks pretty sketchy, but they will work for a bit.  How about I just do that, see if I like leatherworking, and go from there.

And that’s what I do.  Thanks Mary.

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My new $40 leatherworking kit from ebay.  Can’t wait to try it out!

It is so frustrating.  To be so sure of something, and then realize my choice is full of holes.  To find the foundation of my decision collapses at the first real challenge of logic.  It is not the first time this has happened since my brain injury.  Nor the 100th.  And each time it is disheartening, each time it undermines my trust of myself.

At Mary’s prompting, I email the craigslist guy and cancelled my appointment.  Not because I was nervous to see him alone.  No.  But because it made no frikkin sense for me to spend a bunch of money when I haven’t even tried the hobby.  Word.

So, friends, I’m going to explore leatherworking.  I’ll let you know how it goes.  The last few weeks, I have felt compelled to make something tangible, something real.  My hands ache to create, literally.  I’ve spent months crocheting, and now it’s time for me to try something new.

And on I go. Learning. Making. Creating a whole new life for myself, one step at a time.

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My Granny Square Journey

Yarn over, insert hook into stitch, pull up a loop (3 loops on hook), *yarn over, pull through 2 loops on hook, repeat from * once more.

The classic double crochet.  I started with one, added about 25,000 more, and now I have a blanket.  It took me 10 months, from beginning to end.

I started crocheting because I was bored.  Or, more accurately, because I was frustrated.  I was angry and frustrated by my limitations and by all the can’t-dos in my life.  Can’t drive, can’t exercise, can’t read.  Can’t use the computer, can’t watch tv, can’t interact with my smart phone.  Can’t go to a restaurant, can’t call a friend, can’t take a trip.  May 2016 was particularly full of “can’t”s.  Achingly full of can’ts.

In truth, I’m a good sport.  I try hard.  I push through difficult times.  Making granny squares, finding just one small “can” in my life… that made all the difference in the world.  That helped me stay on this earth.  That made it possible for me to face another day full of a million can’ts, and one can.  And another day.  And yet another.

When I started crocheting, I started small.  I made just a few squares.

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But that felt good, so I kept making them.

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Then they started piling up…

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One thing I quickly missed from work was the discrete nature of my tasks.  I would update the hazardous waste inventory for the site, and have a final product in 30 minutes.  I would write a letter to the State Historic Preservation Officer, and be done in a few hours.  I would do a stormwater inspection, and have the report filled out by the end of the day.  My work hours were full of tasks that had a beginning and an end.  When my job ended, so did that easy, daily, sense of accomplishment.

Step in granny squares.  Each granny square is a small distinct task in and of itself, with a clear beginning and a clear end.  Even with my limited energy, I could complete one or more granny squares a day.  Afterwards, I’d have that final product – a completed square – to touch and feel and remind myself that I had accomplished something that day.  Making a granny square was physical proof that today is different than yesterday, and tomorrow will be different than today.  That was and is important to me and my sanity.

Once my granny squares started piling up, Mary quickly suggested I make a blanket with them.  At first I baulked.  I needed what I was doing to be as easy and stress free as possible, and setting expectations about an end product felt like pressure.  After a few weeks, turning it over in the back of my brain while I crocheted, I warmed to the idea.  It also gave me something productive-sounding to tell people – I was making a blanket, versus I was repetitively crocheting small squares for no particular purpose.

Having a goal also provided a way for friends to help me.  Money was particularly tight last summer – some of you might remember my youcaring campaign to meet my basic expenses – so there wasn’t a lot of free dollars available to buy interesting yarn.  Many friends dug through their yarn collections and passed some of it on to me.  The varieties of yarns, the different colors, the different textures and weights, made the repetitive process of making granny squares so much more fun and interesting.  I am very thankful for each of people:

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Mary

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Brie

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Xena

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Quil

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Jill

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Jorie

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Annie

 

 

My pictures aren’t the best, but you can see the wonderful variety of color these women gave to my creation.

Even though I had decided on a blanket being my end product, I wasn’t in any rush.   No rush at all.  As those recovering from an mTBI know, it is almost impossible to rush. Rushing just makes me fumble, get confused, fogs my brain.  So I kept it simple, kept it relaxed.  There were no deadlines.  No goals.  No expectations.  Just a fun, pressure-free activity that was slowly drifting towards something bigger.  One day at a time.

Eventually, though, I had to take the next step.  Eventually, even I started to get tired of making granny squares.  At that point, I decided to start sewing the squares together into blocks of 9-16 that would be easier to manage during blanket assembly (versus +/- 300 loose squares).

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Sewing blocks became another small task that provided the quick daily satisfaction of completion.  It also gave me the opportunity to put colors together in new ways.  Some blocks had themes – all solid squares of about the same size.  Some didn’t.  Some were harmoneous, some not.  My only nod to future plans was an attempt to make at least one side of the block of squares even, for easier joining with other blocks in the future.

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Still, gaps happened.  Things didn’t quite line up.  Some squares I just couldn’t seem to make straight.  Striving for perfection was waaay outside my pay scale, so I just didn’t worry about it.  The wonky blocks of squares simply reflected my life – nothing was quite right, but I pieced it together anyway.

Every once in a while, by this point, I’d have the mental energy to try out a new granny square pattern.  Some were pleasing, some not.  Some I was able to figure out… some, I just wasn’t.  But in the end, I did end up with a few to add spice to my final product.

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This flower probably one of my favorite ones.  Unfortunately, it doesn’t lend itself to usefulness in a blanket – too many gaps for fingers and toes to get stuck in.  But, I put it in anyway.  Just like any life, my blanket deserved to have a few interesting twists and unusual patterns to add to its complexity and richness.

Time passed, and eventually I had 20 or so blocks of squares sewn together and I was ready to take the next step.

That’s where my mental ability met a brick wall.  Thinking about how the blocks would fit together felt overwhelming.  What size would the blanket be?  How would I connect the blocks?  Decisions needed to be made, but my ability to make those decisions was lacking.  I would tried to grasp a problem, but instead would run into an amorphous cloud of gray confusion.  Over and over and over again.

Classic yea olde executive function impairment.  Ugh.  Since my brain injury, running up against this brick wall has been the end to many a story.  And it would have been the end of this one, too.  Really.  I wouldn’t have eventually figured it out; I would have been left with a bunch of blocks of granny squares and no final product.  That is because the smallest roadblock is insurmountable when your executive functioning doesn’t work.

After three years with this impairment, I’ve figured out a work around.  Or, I should say, sometimes I remember a solution.  This time it took me a few weeks, but then I had an idea – I could ask for help!

Asking for help wasn’t even on my radar before I was injured.  It certainly wasn’t a natural solution for me post brain injury.  But it works, almost every time.  Personal growth moment, everyone.

I asked Mary for help, and she helped me.  Simple as that.  Incidently, as an art professor and as the director of photography at a local arts organization, she is an expert at helping others figure out how to create.  Her extensive problem solving abilities have helped countless people figure out how to birth their vision into reality.  And I got the benefit of that expertise.  Plus, an unimpaired brain can often make the most overwhelming problem solvable.

She helped me decide the limits of my blanket (use another blanket as a template).  She helped me decide how I would connect them (sewing invisibly instead of crocheting a visible connection).  And then, she helped me fit all my jigsaw puzzle pieces of crochet together.

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Even better, she took a picture of the arrangement and printed it on 2 ft x 3 ft cardstock paper, so I would have the visual reminder while I worked.  Invaluable assistance.

Once all that was decided, I got to work.  I started with granny squares, then I made blocks, and now I was joining the blocks together.  For the first time, I could actually imagine that I might have a blanket in the end.

As I joined one block to another, there were gaps.  Large gaps, small gaps.  Square gaps, rectangle gaps.  Narrow gaps, wide gaps.  The price of not planning.  But, really, I didn’t mind.  I took those opportunities to add a bit more color to the blanket.

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For example, above – the dark green, the purple, the rainbow colors are all yarns I crocheted in to fill the gaps between blocks; they weren’t part of any granny square, but something extra to make it all fit together.

In other situations, normal sized (3 round) granny squares were just too big, so I made one and two round granny squares to fit the holes.

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As I sewed all of these mismatched pieces together, I couldn’t help but think about my life post mTBI.  My injuries left a lot of holes in my life, a lot of gaps.  At first I tried to fill them with my old solutions, my old behaviors – but I just wasn’t able to.  Instead, I have had to grow and change and cultivate new parts of myself to fill those gaps.  I have had to be flexible and open and accepting.  And, in the end, I have had to just keep plugging along, moving forward.

As I neared blanket completion, one thing became clear.  There is a “right” side

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and a “wrong” side.

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Or, less judgementally, there is a visually perfect(ish) side, and a side where all the ends of yarn show and each stitch I used to join one square to another shines clear.

For a little while, I struggled with whether I should add some sort of fabric backing to the blanket, to hide the raw side from view.  I decided no, definitely no.  I decided that the part of the blanket that passes for normal is just as valid and valuable as the part of the blanket that shows the thousands of tiny efforts needed to make it whole.

Rather like those of us recovering from an mTBI.  While with most aquaintenaces and strangers I pass as normal, there is also very much the side of me that shows all the planning and compensation and support that makes that passing possible.  I am not ashamed of that part of me.  It is as real, as true, as the shiny part that smiles easily and likes to laugh and can interact appropriately with a cashier at the store.

Once all the granny squares were sewn together, and each loose thread was sewn in, the blanekt still didn’t feel finished.  I wasn’t ready to declare it done. Part of that was dread at finishing my project, at giving up such a known and reliable comfort after so many months… when I really didn’t know what might fill that hole.  Part of it was I felt that with all the cacophany of color and varying square size, the blanket needed a unifying element.

In the end, I decided to add a single crochet border.  The first reason was to visually create a border, a limit to the project.  Secondly, to provide stability.  Each yarn was different, and each stretched at a different rate.  Providing a solid border gave consistent strength to the blanket and protect all those parts that were most vulnerable.  With the border, no part of the blanket would have to take more stress than it could handle.  It was protection and support and, yes, a shield from the stresses of the world around it.

So, after all of that, here she is in all her glory – my finished blanket.

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A warm, useful granny square blanket that I will enjoy the rest of my life.  That is functional.  That has a use.  And that can be a reminder of a time in my life when I felt so trapped and hopeless and lost, yet found one small thing I could do.  Over and over again.  Until I ended up with something beautiful and permanent.

Plus the cats like it.

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When you look at my blanket, it isn’t obvious the days and weeks and months that it took me to complete it.  You can’t see all my trial and error, my ripping out and starting over, my creating new pieces to fit precisely in a gap.  From beginning to end, I did this.  I made this blanket.  I crocheted it, I sewed it, I put it all together into a beautiful whole.  Instead of fighting against what I couldn’t do, instead of wallowing in my limitations, I focused on what I could do.  No, it wasn’t fast, it wasn’t efficient, it wasn’t perfect.  But I created it.  A little bit at a time.  A piece a day.

Me. I did that.  Kim.

In any dark time, when life feels full of can’ts, I hope you too are able to find one small thing that is a can, a yes, an able to do.  Just one small thing to hold on to.  That really can make all the difference.  It did for me.

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Energy Limitations from Chronic Fatigue – Explaining Brain Injury (VIDEO)

Fatigue that is chronic.  I wouldn’t wish it on my worst enemy.  Of all the mundane and weird ways that brain injury has effected my life – this is the way that is most crippling.

It gets to me.  The grind of day after day coming up short.  Of wanting to do something fun and not being able to.  Of wanting to do something useful and running up against the brick wall of fatigue.  I could tolerate a week, or maybe a month of it… but more than three years?  Gods, what a loss.  So much time lost because I didn’t have the energy to live my life.  And no end in sight.  That makes it doubly hard.  No end in sight.

I’ve been thinking about the Spoon Theory recently.  It’s a way to explain the effects of chronic fatigue to other people.  I liked it enough that I decided to make a video talking about it.  Give it a watch!

In case the youtube box doesn’t magically appear on your screen, the direct link to the video is: https://www.youtube.com/watch?v=UIRQevZhVMo

 

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HBOT Evaluated

Hyperbaric Oxygen Therapy (HBOT) is the most recent experimental treatment I’ve tried to help with my Post Concussion Syndrome (PCS) and mild Traumatic Brain Injury (mTBI).

After 65 “dives”, here is what I’ve learned.

Is it a miracle cure?  No.

Is it a solution to all my limitations and problems?  No.

Does it help?  Yes.  Definitely, it helps.

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Hanging out for another hour in the hyperbaric chamber with my oxygen mask and ear plugs.

Some people I’ve talked to who have tried HBOT have had immediate, amazing results.  Some just knew right away, during their first treatment, that it was going to help.  That wasn’t me.

For me, the improvements I’ve experienced are more subtle, more delicate.  Just like I have trouble describing exactly how my brain injury limits me in a million ways, I have trouble describing exactly how HBOT is helping.  But it is.  I was cautious coming to that conclusion – I’ve been disappointed again and again.  But, after the first 25 treatments I couldn’t deny it anymore.  HBOT is making a real and significant difference in my life.

For more details about my experience being inside a hyperbaric chamber, read my first HBOT post here:  Hyperbaric Oxygen Therapy (HBOT)

So let’s talk concrete impacts.  How does HBOT help?

Improves Mood

    If I’m down, I shift to neutral.  If I’m neutral, I shift to feeling positive.  On the surface, that seems like a little thing – why should it matter how I feel?  But, it does.  It is a big thing to feel good about my day, about what I’m able to do, about my future.  Not only does it make my life more pleasant, but stacking one day of positivity and hope on top of another, day after day, helps me heal and become who I want to be.

Increases Energy

    I have more energy.  Sometimes, I’ll roll out of the tube and feel energized.  I’ll feel energy running through my body and pushing me forward to do, act, live.  That makes me so hopeful.  Also,  instead of having to nap every single day for 1-2 hours, I nap once or twice a week when I’m doing HBOT.  I have the energy to do more things, think more thoughts, and more fully live my life.  Subtly, the additional energy helps me create and hold on to my sense of self, which in turn makes me feel more confident and sure of my perceptions and decisions.

Perks Up Appetite

    Some might say – hey, that’s not a benefit!  But to me, it is.  A healthy animal has a healthy appetite.  The end.  My appetite dropped significantly since my head injuries, when my sense of taste and smell decreased.  Now, I’m glad to feel hungry and desire food.  After almost every HBOT session, I’m hungry.  Eating is life-affirming and nourishing.

I’ve also noticed that the increase in my energy allows me to experience clarity two times a day, instead of one.  Since my injury, I am clearest mentally when I get up in the morning.  By the afternoon, all hard thinking for the day needs to be done.  Now, I find that I have a second wave of clarity around 4-6 pm, where I can do things I didn’t do earlier – manage the bills, write, make decisions.  Having that extra bit of time has made managing my life so much more doable.

Like everything with this brain injury, though, healing is slow.  Painfully slow sometimes.  Part of the challenge during the entire healing process has been to accept that it is a rollercoaster – you go up, but then you go down.  You go left and right and diagonal and all sorts of directions, with the hope and desire to slowly, slowly move forward.  What HBOT offers is to redirect me, on a daily basis, forward.  Maybe just a few inches forward, but forward none-the-less.  And that is what is so valuable, that it helps me consistently move forward, one day on top of another, to eventually… eventually, get me to full function and health.  Don’t get me wrong, I still have ups and downs.  I still have bad days and days where fog fills my head.  I still overdo it and set myself back.  But HBOT helps a little bit, every day, to push me in the direction I want to go.

How does it do that?  I don’t know.  There are all sorts of theories out there, and a little bit of scientific study, and much more to learn.  A nurse friend of mine thinks it makes sense that increasing the oxygen in my brain and my bloodstream helps me heal.  He sees oxygen used every day to help patients at the hospital.  So, there’s that.  In the end, though, I don’t really care why.  I just care that it works for me.

All of the improvements I’ve experienced have allowed me to be more social.  Not only to have the energy to go out a bit more often, but more importantly – it has allowed me to carry on a conversation in a competent and skilled manner.  It has allowed me to be more than a fogged-brained zombie who can only manage to show up for the gathering.  Now, I’m am someone who can contribute and be part of the gathering.

The improvement was obvious at our Solstice Party in December.  We had friends over, some new and some well known.  I spent two hours chatting.  Continually.  Not passively sitting, listening to someone who loves the sound of their own voice.  No.  Having conversations.  Engaging.  Responding.  Starting conversations.  Bringing up topics.  Framing my response within the context of my experience (e.g. remembering the game Smear the Queer I played as a child and how that relates to one friend’s experience teaching young people).  Basically, acting like a normal person.  Talking like a normal person, with enough of my mental faculties to enjoy the conversation and be part of it, instead of struggling to push through a fog trying to grasp what people are talking about.  A nice change, I have to tell you.  A real nice fucking change.

So, in conclusion, does HBOT help me heal?  Yes.  It has helped me enough that I have taken action.  With the assistance of a medical equipment loan and the generosity of a loving friend, I have purchased my own hyperbaric chamber.  Here it is:

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A work in progress

Well, actually, those are the boxes it is in.  I hope, soon, to have it put together and running.  Maybe in the next week?  You can’t tell, but it’s the smallest (and cheapest) available on the market from a reputable manufacturer.  Once I have it all put together, it will look something like this:

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The Shallow Dive – 26″ diameter hyperbaric chamber by Summit to Sea

I am still waiting for a refurbished oxygen concentrator to round out the equipment needed for hyperbaric oxygen therapy.  Hopefully that will arrive in the next week or two.  The extra bit of wait is worth saving $500.

So there it is.  I believe in HBOT enough to spend more than $5000 to buy my own.  I believe in it enough that it will be my main medical treatment for the next year or two.  I really, really, hope my financial investment pays off.

I’ll keep you posted on my experience.  I’ll also let you know once I have my HBOT system set up and my new daily routine established.  Wish me luck!

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