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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TBI Rockstars – Doing What We Can (Video)

Good news!  Brie and I have created the next installment of the TBI Rockstars.  This time we talk about how hard it is to be consistent and productive while recovering from a brain injury — as demonstrated by the big time gap since our last video.

The take away message?  Don’t let what you can’t do stop you from doing what you can do.  We can’t do everything we want because of our limitations, but we are going to bring you videos to help you live your life of brain recovery a little more gracefully.  Check out our newest video below!  You’ll be glad you did.

For those who don’t have a giant youtube video box appearing above, here is the direct link – please cut and paste!  https://www.youtube.com/watch?v=1obyVhu1Xmo

The videos Brie and I share might be a bit rough around the edges for a while, but that’s okay.  As all of you recovering from a brain injury understand, we’ll do the best we can with what we have.  The most important thing – the vitally important thing – is to speak and be heard however you can.

If you like our videos, be sure to subscribe to our channel on YouTube.  We’re the TBI Rockstars!

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The Gift

I ordered Mary’s Winter Solstice gift two weeks ago.  It arrived last Monday.  I checked it over and it looked good – quality – exactly what I wanted it to be.  Winter Solstice wasn’t until Wednesday, so I put it in my room to wrap later.

And forgot about it.

Monday evening, I see the box in my room but make no connection with needing to do anything with it.

Tuesday passes, and the same thing happens.  I have Mary’s gift!  To my mind, that is a task completed.

Wednesday arrives, and it is Winter Solstice.  All day.  We spend all evening together.  No present thoughts cross my mind. Mary and I don’t have gift requirements in our relationship (except for her birthday – never forget it!).  Certainly not for the longest night of the year, when one should be snuggling down under blankets and lighting candles to symbolize the returning of the light.

It isn’t until late that Wednesday night that I remember the gift, again.  Mary already went to bed, so I guess she won’t be getting the present on Winter Solstice.  Damn.

But, for the moment, I do remember the present and I realize it needs to be wrapped.  That’s when I run into a roadblock.  Because, unusually, this year we sent out a few gifts.  Wrapped gifts.  That used up the last of the wrapping paper I bought… three or four years ago?  And the last of Mary’s stash of tissue paper.  And still I had to wrap my father’s gift in newspaper (he’s not the type to mind).

Through this whole wrapping process, at no time did it cross my mind that it might be a problem for me since – duh – I had a present to wrap too.  Not one moment of concern.  Now, Wednesday evening, I was faced with the reality of that lack of wrapping resources.

I could put it in the box it came from.  Naah.  Not pretty enough.  Or I could wrap it with newspaper.  Too much like my father.  It’s too late to pop out to the store and get new wrapping paper.  And if I wait until tomorrow, I might forget about the present again.  Hmmm…  I scour the house.  No, no paper bags.  Hmmm… a cherrio box!  I start bending it into a kind of wrapping situation… wait, how is this better than a cardboard box?  It isn’t.  Hmmmm…

Finally, I hit upon a solution.  Earlier that day, I had emptied a 5 lb bag of flour into a plastic container.  That might work.  I dig through the recycling bin and find the wrapper, and turn it inside out.  Excellent!  The paper is white and thick enough that you can’t see the King Arther Flour markings.  Good enough in a pinch… at least not visually offensive.

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A paper flour bag comes through for me in a pinch.

I quickly wrap my gift.  I debate briefly about putting it out for Mary to find Thursday, but it isn’t a nice enough wrapping job for her to dwell on it, so I place it back in my room to grab at the right moment.  And forget about it.  All Thursday passes, all evening together, and not one moment where I remember the gift I want to give her.  When I go into my room to do puzzles before bed, I discover it waiting for me.  Dammit.  Will I ever give Mary this gift!?!

Finally, I wake with the dawn Friday morning – two days after solstice – and remember the gift by some miracle.  Should I go downstairs as she gets ready in the morning and give it to her?  It is a risk.  Usually, she likes space in the morning as she gets ready and gets extremely cranky when she doesn’t get it.  On the other hand, I do have a present to give her which likely will put her in a positive space.  I decide to live dangerously and roll myself down the stairs.

I grab the gift from my room and give it to her.  The flour bag wrapping passes muster.  Good.  She opens it, and sees the two-cup stainless steel stovetop espresso maker I got her.

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A cute little piece of equipment, if I do say so myself.

She likes it… and doesn’t like it.  I can tell. It’s a combination of her facial expression not being quite full of joy, and a feeling of her energy staying flat instead of surging.  If I was a bit more oblivious as a person, or if I had been socialized as a man, it would have been easy to miss.  But I’m not, and I wasn’t… so there it is.

Damn.

Four years ago, pre-injury, I would have been hurt, deeply wounded that she didn’t like my gift.  Maybe for months.  Any time I thought about her not liking the gift, I’d feel bruised again.

A few years ago, post-injury, I would of felt hopeless, sad, and worthless.  My fragile ego would have crumbled, I would have quickly devolved into tears and felt like the world was ending.

Now, my response is different… because I have evolved and healed.  During these last six months off, full of rest and healthy choices, my base identity has stabilized and become stronger than it has been in a long time.  I am more centered in myself.

This stability has allowed me to regain that essential ability for dealing honestly with other people – not to take things personally.  Mary is being honest, not attacking or insulting.  My understanding of the world has grown so that my partner not liking a gift I give her is not a rejection of me as a person.

Our years together have also taught me that Mary and I are very different.  How we experience the world is very different.  So, instead of jumping to the idea that she doesn’t like my gift, there is room in my reality to know that something might be off about the gift that isn’t immediately apparent to me.

Conversation ensues.  Like a good gift-receiver, she insists she’s happy with the gift.  That she will like using it.  That I don’t need to do anything.  I push, because I do want to get her something she wants to use every day.  Eventually, we get down to the truth.

It’s the shape.  Really.  That is what is the matter.  It is not as pleasing as the traditional Italian espresso maker shape.

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Her current espresso maker

Why am I getting her an espresso maker when she already has one, you ask?  Having her boil an acidic liquid in a $5 aluminum alloy pot on a daily basis doesn’t suit my sense of safety.  I picked her out a similar sized stainless steel pot so she can have her coffee but not expose herself to aluminum flakes in each cup.

Years ago, I would have been angered by her placing so much value on how something looks.  It makes absolutely no sense to me based on my worldview.  Now, I can just accept that she’s different, and move one.  Accepting Mary, different perceptions and all, is part of loving her.

My brain injury has been very similar.   I use to rage against it, to be angry at it.  Push it to be something other than what it is.  And now I don’t.  I just accept it, and move on.  In both cases, acceptance has made my life a lot more peaceful and allowed space for love.

What, accept your brain injury?  Isn’t that the same as giving up?  No.  Not really.  Although my brain injury at one point might have been something that happened to me or that was caused by a particular action, now it’s just me.  It is just part of who I am.  Getting upset or angry at my limitations is the same as getting angry at myself for being who I am.  It doesn’t make sense.  Why not just provide myself the same acceptance that I extend to the woman I love?  Why not just say – hey, I don’t understand these parts of me all the time, but I accept them.  They are part of who I am.

The eventual outcome of my gift has yet to be determined.  I researched those little espresso pots online and they aren’t made in stainless steel in the traditional shape.  I offered to pack it away and give it as an (excellent) gift to someone else.  Then Mary decided to gave it a try and it warped on the stove… only to unwarp when it cooled.  She compared the size of the coffee compartments, and the new one is much smaller.  We decided to donate it to the Syrian refugees coming to Rutland, VT in the next few weeks, so I cleaned it up properly and reboxed it.  Then she said she wanted to poke at it some more and experiment.  Regardless of the eventual home of my gift, I know it will be used and useful.  Rather like me.  What more could a item want?

 

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