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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Professionally Disabled

“So, Kim, what do you do for a living?”

Such a simple question.   Steve, my new acquaintance, isn’t trying to stump me.  He isn’t trying to trick me or make me uncomfortable.  But I do feel uncomfortable, because I just don’t know what to say.

What do I do for a living?

Fuck if I know.

Should I answer literally?

“Well Steve, mostly I spend my time doing as little as possible while doing enough that I don’t go completely crazy from loneliness and lack of meaning in my life.”

or, how about this

“I spend my day doing mundane, easy tasks that you don’t even count as work.  If I have a day where I shower AND make dinner… that’s a busy day.”

or, how about bitter

“I’m that lazy, worthless grifter sucking money out of the system, using your hard-earned tax dollars to pay my rent.  Oh, you didn’t expect me to be well educated and white?  Well, welcome to the real world where shitty things can happen to everyone.”

Thoughts flicker through my mind slowly, at the speed of a plodding workhorse.  In the conversation there is a pause as he waits for my answer.  I’m notably flustered, lost.  My eyes dart around the room, hoping for some inspiration.  My brain flails around trying to find something appropriate to say.  As the seconds tick by, it becomes more and more awkward as my conversation mate waits for me to throw the conversation ball back.

Finally, I just pretend that I am still working where I have been for the last nine years.

“I’m an Environmental Scientist.  I work for the Vermont Army National Guard.  Most people don’t realize it, but the Guard has an amazing recycling program.  We recycle our motor oil, our antifreeze, and have a 50% diversion rate for our trash…”

There.  I’ve answered.  Done.

Steve’s eyes deaden, his smile becomes forced.  He shifts around, clearly he doesn’t want to talk to me anymore.  That’s fine.  It’s not because I’m disabled or I’ve stopped passing, it’s just because of my old employer.  At this art opening, with this about 60 year old white man who clearly has hippy roots, the military is the enemy and by extension so am I.  Whatever.  It’s normal, I’ve passed. That’s all I was really worried about.

Sometimes I don’t.  Sometimes, I try to tell the truth.  The whole truth.  And nothing but the truth.  Truth has always been easier for me than any polite lie.  But, yea old brain processing is impaired, and my ability to summarize is impaired too.

“I’m currently disabled.  I hit my head playing roller derby several years ago, and never completely recovered.  I managed to hold on to my job by the skin of my teeth, making myself completely miserable every single day.  I was a shit to be around too.  Unable to regulate.  The littlest decision felt overwhelming.  Well, that actually still happens.  But since I’m not working the pressure isn’t as heavy so it really only happens when I’m tired now.  But I’m tired pretty much all the time.  And sad.  It sucks not being able to do anything…”

You get the picture.  As I talk, people’s eyes glaze over and it starts to feel awkward.  And I don’t know when to stop.  Summarizing and concluding take the ability to hold the intent of my words in mind… and often that just isn’t available.  So I provide waaay too much information.  To strangers. Social fail!

Sometimes, when I know I’m going to meet people and I have the energy think ahead, I prepare a one or two sentence statement that is the condensed truth without getting into my personal business.

“I’ve recently taken a break from work to focus on recovering from a brain injury.”

Bam.  Short, simple, sweet.  And mostly true.  Is eight months really, truly, “recently”?

Or how about something even more generic and blasé.  I mean, do strangers really need to know about my brain injury?  No.

“I’m not working right now while I focus on some medical issues.”

Both of these responses requires a follow up.  Such a quick deflecting sentence means I need to promptly ask about their job and act fascinated by what they do, since that’s the only topic of casual conversation available.  Because I don’t want to talk about my brain injury or my crap-shoot of a life.  No, I’d really prefer not.  It isn’t polite nor neat nor easy, so let’s not try to tackle that as new acquaintances, okay?  Let’s talk about your work.  Explain exactly what you do again?

I find these conversations stressful.  I won’t lie.  I find it frustrating and difficult that people keep asking me over and over again what I do for a living.  It feels like an attack I have no answer for.  What am I suppose to say? I’m professionally disabled?  Cuz, kinda, I am.  Social Security sends me money every month.

Imagine saying that at a mixer.

“So, Kim, what do you do for a living?”

“Oh, I’m professionally disabled.  I’m paid to go to medical appointments and rest and heal. How about you?”

Kinda fun answer, actually.  Unfortunately, that would probably push me into the category of a little socially off and weird.  And then we’d talk about my disability… which I don’t really want to do.

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As professionally disabled, I need to dress up for my job.

What do disabled peeps who can’t work say they do for a living?  What solutions have all of you come up with out there?  Let me know in the comments – I’m really curious. I know I am not the only one struggling with this issue.

I’m tired of struggling.  I’m tired of not knowing what to say.  I need to take action.  I need to plan what I’m going to say before this issue pops up again.  There is no reason to be caught flat footed.  I can prepare.  Because, I assure you, this question will be asked again.

Let’s think about this.  What is the purpose of someone asking me what I do for a living?  It’s a conversation starter.  That’s it.  It’s an attempt to find points of shared interest and connection, that can then be talked about further.

Solution:

Settle on a one or two sentence response that feels honest but not too personal.

Then – here’s the exciting part! – I need to throw the conversation ball back.  I need to plan how I will throw my conversation-mate a bone. Since the purpose of asking what I do for a living is an attempt to find points of shared interest and connection, I need to throw back something personal about myself that we can then talk about.

That has been the missing link.  I’ve just focused on what is being asked.  I’ve floundered with a thousand different answers.  But this whole time, I haven’t addressed the underlying issue, the underlying intent of the person who is asking the question.  They want to get to know me, at least for a minute, superficially.  For them to do that, I have to tell them something about myself.

What do I want to share about myself?  What do I want to tell a friendly stranger about my life?

….?

I don’t know.

Hmmm… okay, what about my life is conversation ready?  What is something someone in the world might relate to.  What am I doing?

I’ve been doing Hyperbaric Oxygen Therapy (HBOT).  That’s been taking up a lot of my time for the past three months.  65 sessions in.

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Hanging out in the tube…

But I don’t really want to talk about a medical treatment.  No, not really.

I just learned how to play Mah Jong and I plan to start playing weekly at a nearby library.  I’m excited about that.  There are daytime games, so I’ll have the energy to attend.  Yes, I’ll probably be playing exclusively with people over 60, but they are the best conversationalists.

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American Mah Jong

It’s kinda weird to talk about playing a game when asked about my job.  No, that doesn’t seem to be a good fit.

I’m painting the kitchen cabinets.  Or, correction (sorry Mary), I was painting the kitchen cabinets three months ago until I started HBOT.  I’d really like to finish that project.  That’s something important to me.

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I will finish this project!

But no.  If I can paint kitchen cabinets, the easy question is why am I not out there working.  Sure, I can only work on the project an hour a few days a week… but I don’t want to emphasize my inability or my limitations.  I’d rather talk about something I can do.

How about this – I write.  I’ve been writing this blog for over two years now.  It’s been one consistent mode of expression and communication.  At first, I wasn’t impressed with trading physical activity and aggressive full-contact gameplay with writing.  But, it’s grown on me.  It’s something I can share, too.  It’s a creative, productive sort of thing to talk about.

So that’s my answer.  Writing is one aspect of my life that other people can relate to – people want to write, have written, have thought about writing.  People understand it as a real “thing” that grownup people do.  A valid productive pastime.  Or not.  But of those who don’t think it’s a valid thing to do, there is that predictable stereotypical response of good-old-boy-do-some-real-work sort of thing I grew up with.  Familiar and easy to deal with.

Let’s put it all together.

“So, Kim, what do you do for a living?”

“I’m currently not working so I can focus on some health issues.  However, for the last two years I’ve been writing a blog.”

Quick response – check.  Deflect from head injury – check.  Throw the conversation ball back – check.

Maybe add in something about what I use to be, because being an environmental scientist has been a big part of my identity

“I’ve worked as an Environmental Scientist for 15 years.  More recently, I have stopped working to focus on some health issues.  On the plus side, that has allowed me to start writing.”

Perfect.  I’ve sandwiched the socially difficult truth between two conversational opportunities.  They can ask me about being an Environmental Scientist, or about writing.

These few sentences, with practice, can flow easily off my tongue, ushering the gears of polite conversation forward.  If I want to be really prepared, I could brainstorm a few responses to further questions or inquiries.  But, I’ll leave that for another day.

This is my new default response.  I feel relieved.  I feel successful.  Thank the Gods.

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Three Years Down

I was so excited for the 2014 Roller Derby season.  So many of my dreams were coming true.  I had been elected as Captain of my league’s B Team and had spent hours pouring over leadership manuals to figure out what I needed to do.  I had also decided to try a new aspect of roller derby – Jamming.  Hitting women on skates had always been my favorite thing about roller derby, my strength.  But, after five years, I decided it was time to try something new and put the star on my head instead of always reaching for the pivot panty.

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One of many moments yelling on the track.  Photo by Mark Eley (markeleyphotography.com)

Before the day that changed my life, my team had only met once.  I was so nervous – being a leader wasn’t natural for me.   I have always preferred to go my own way and only be responsible for myself.  But I was excited and newly read up on all things team captaining, so I shared some ideas I’d come up with.  I still remember that meeting with The Silencer on one side of me and Savage Patch Kid on the other.  I struggled to convey my concepts… with limited success.  Communicating in person, with words, was not my strong suit then, much like it isn’t my strong suit now.  But I try.  I tried then, too.

I figured as the year went on, I’d get better.  I’d learn and grow and help my team to win.  I knew I’d do well as Captain.  My derby strengths could only help the team – aggression, steadiness, confidence.  An unwillingness to ever give up.  And a fundamental understanding of what it means to be part of a team.  I wasn’t the best skater in my league, or the worst for that matter, but I was a veteran who had seen many things and been around many years.  It was clear I wasn’t going anywhere.  They would be able to rely on me.

Until they couldn’t.  Until that fucked up day on January 25, 2014 when I hit my head, got a concussion, and never recovered.

Never recovered.

As I struggled with my new limitations, I chose the practical route of trying with all my might to hold on to my job.  Skating and the game were things I desperately ached for, but I needed money to pay for new knee pads and a home to store my derby gear in.  Plus, you know, food and stuff.

More time passed, and I just kept on not getting better.  And I kept not being able to return to derby, or the many years of connections I had there.  I disappeared off the face of the earth as I struggled to keep my job.  One year past, then two.  I still struggled.  The people I had known moved on, had all sorts of new experiences and whole new lives… while I continued to struggle with the same stupid limitations, the same stupid stuff.  So deeply lonely most of the time I couldn’t even let myself know it, and missing the connections I had had with my teammates but without the social skills or energy to reach out.  More time passed.  I was injured a second time – this time by a can of Hunt’s tomato sauce falling on my head.  In response, my life had the grace to finish falling apart.  And now I’m here.  Three years later.  The entire last three years of my life a story of struggle and failure and trying to accept my new self.  Fuck.

To give all of you derby peeps an idea of how long it has been since I skated, three new sets of WFTDA rules have come out.  When I skated, there were still minors.  And one minute penalty box times.  The game keeps changing, evolving.  Roller derby is like a freight train hurtling forward at top speed; nothing can stop it.  People fall off, but the sport keeps going.  I am glad I was a part of roller derby.  That, I will never regret.

As part of my annual reflections, I have taken the time to figure the amount of work income I have lost due to this injury.  After one year, I had lost $24,000 in income (my one year blog here: A Year Later).  After two years, I had lost $39,000 in work income (my two year blog is here: I’m Turning 2).

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Drum roll please…

After three years of this injury and losing my job, I now have lost $95,000 in work income.

I think I’m going to stop counting.  It’s just getting too depressing.  And really, does it matter anymore?  My job is gone.  I’m unemployed and disabled.  What could have been, that lifetime, is so far gone from where I am now and I’m ready to let it go.  It doesn’t matter anymore.

What is more important to me, now, is how has this injury qualitatively effected my life.  Here are the highlights of what I have lost in the past three years:

  • My Job
  • My Intellect
  • My Freedom

What more is there to say?  It sucks.

To balance that, here are some things I have gained:

  • Increased understanding and acceptance of myself as an imperfect, needing, fragile being
  • Greater compassion for myself and others
  • Knowledge that I am loved for something other than what I can do for other people

Pretty good stuff, I have to say.  It has been a long, difficult road to gain these greater understandings.  But… at least I got something for showing up.

Looking towards my future, here is what I know.  I might get better.  I might not.  I have little control of what might or might not happen.  I will do my best to create an environment supportive of healing, but even if I do everything perfectly I might improve to a certain point and not beyond.  While on one hand that is shitty, on the other hand it has given me the freedom to let go in a way I never have before.  Let go of expectations.  Let go of future plans.  Let go of the stories I told myself for the first 38 years of my life.

With every ending comes a beginning.  I  am finally past the ending part, thank the Goddess.  It was a long and fucking rocky road.  Every thing I had, every concept of myself I possessed was broken.  Now, I heal.  Now – right now – I am laying the foundation of my new life based on what I can do, based on who I am now.  That is something to be thankful for.

Blessed be

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Goodbye 2016

I’m glad 2016 is gone.  Not for any dramatic reason, although there are plenty of those.  For one simple reason – I’m tired of not knowing the year.

It doesn’t often come up in polite conversation.  No one is like, “Hey, Kim, what year is it?”.  Because people with normal functioning brains know, automatically and without a shadow of a doubt, what year it is.  Even people with brains that are only limping along know what year it is.  For me, however… knowing the year has been a serious challenge since my original head injury in January 2014.

2016 has been a particularly challenging.  I don’t know why.  It might have been the second bump on the head, the resulting crash and burn of my functioning on all levels, losing my job and the confusion of a new non-working identity.  Or, it might just be chance, random brain injury weirdness.  And really, in the end, does it matter why?  No, it doesn’t.  Not really.  It just matters what is.  And along with all the other strange little shortcomings and weird limitations, one of my things is I don’t remember the year.

Particularly 2016.  Did I mention that?  Ah yes, re-reading the above paragraphs, I did mention that.  So, for all of 2016, my baseline response when I queried my brain on the year was “2015”.  For at least the first half of the year, my brain was confident.  2015.  Duh.  As time passed, and more experiences piled up to separate me from my last proper 2015 year experience, my brain still offered that it was 2015, but was less sure, less positive.  It was more like, “2015?”.

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When that happened, some consideration was necessary.  Hmmm, what year is it?  Because one thing I’ve realized through this whole process of compensating for my limitations and trying to pass as normal… people get kinda freaked out if you don’t know the proper year.  This is different for a few days before or after a new year… but by February, boy, you better be on the correct page or people will unconsciously label you as a bit looney.

As I said before, the saving grace is that people don’t ask the year.  They just don’t; it’d be weird to ask someone what year it is.  What people will ask is, “Do you know the date?”.  And it’s competely fine if you don’t know it, because normal people wander around not knowing the date all the the time.  So it’s fine not to know that.  Ironically, since I keep a daily journal and because numbers are generally my friends, I often do know the date… plus or minus a few days.  With a little bit of effort, I’m usually correct.  It’s stored in my head as a number, almost a random number, floating in space “12/13” “1/9” “7/31”.  I make a point to mention that it’s stored as a number because if you ask me the month, I don’t necessarily know that either.

These lacks don’t bother me.  Not really.  I’m often a very practical individual, and as problems go, not knowing the year barely impacts my life.  It only bothers me because it is a sign of how far my brain still has to heal.  And.  It bothers me because I don’t want other people to worry, particularly Mary.

It’s only come up a few times with Mary.  Perhaps once when I was joking about not knowing what year it is, or a day I was having particular trouble recalling the month.  Mary would ask me in a falsely casual way, “Kim, what year is it?”.  Her eyes would be worried, her face pulled into a slight frown.  She tried to convey my answer didn’t matter to her, but the energy radiating from her body made it clear it did.

As I struggled to figure out the year – I’d take extra time to make sure I got it right – her face would get more and more grave.  Tick tick tick.  Her waiting, me struggling.  Eventually, with enough time, I’d remember something significant that happened relatively recently – losing my job, getting approved for Disability – and know those things happened in 2016, so I’d get to the right answer.  I’d say just as casually, “2016 of course” and leave it there.  But we both know I failed on some level, because it took me too long, waaay to long, to come up with that answer.  One second, five seconds to answer is normal.  A good 45 seconds or a minute, my eyes looking back and forth as I shuffle through my mind trying to find the right answer… that is not.

I took the extra time because I knew the wrong answer would really worry her.  I am confidently that my difficultly remembering the year doesn’t limit me from safely drive a car, weeding the garden unsupervised, and paying my bills.  Really.  But other people, healthy people, can’t know that.  Before my injury, if someone told me they had trouble remembering the year but everything else was fine… well, I’d put an asterick next to their name in my head and add a note to my judgement of them *may not be mentally stable, or perhaps *not entirely here, or maybe *impaired, don’t trust.  I’d still happily be friends with them, but perhaps I’d hesitate to lend them money or let them organize a trip.

If remembering the year is difficult, why does it matter that 2016 is gone?  Good question. I told you that all of 2016 my brain defaulted to 2015.  What I didn’t mention was that as the year wore on, and my brain got less sure of what year it was, there’d be some reasoning before coming to a final answer.  The reasoning during the second half of 2016 went something like this:

  • What year is it?  2015?
  • No, that can’t be right… it’s later than that.
  • Are you sure?  Yes, definitely it’s later than 2015.
  • What year is it?
  • Blankness.  I query my brain about the year and all I get is blankness, a foggy nothingness, a wall that doesn’t budge when I push against it.  No help, no input, no answer.
  • Reasoning steps in.  Okay, it feels like a lot of time has passed.  It definitely isn’t 2015.  Well, I’ve been having this trouble for a while, and I don’t want to look like a fool and underestimate… so it must be 2017!
  • Yes, 2017, that seems right.  It’s 2017.

And so that is how my almost-immediate second default answer during 2016 became 2017.  Because a lot of time has passed, so it must be 2017 by now, right?

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And look at that, now it is!  How great is that!  All year, I’m going to be right.  Every time I write something down, 2017 easily flows from my pen.  Because my brain knew all along, it’s 2017.  And now the world has aligned to make it true.  For a year, anyway.  Maybe by 2018, my brain will reestablish my internal clock and I will regularly know the correct year, without effort.  Or then again, maybe not.  Either way, I’ll keep sashaying down my path of healing.  That is, really, all any of us can do.

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