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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Damn Clinical Trial

A few weeks… no – a few days after I was approved for SSDI, I heard about a new clinical trial for people with mTBIs.  The trial tests a neurofeedback device that, in combination with a rigorous physical therapy program, can help people with an mTBI significantly improve their balance.  The study is looking for volunteers near Montreal to help with the trial, and I meet the criteria.

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Good info about the study is available at braininjurytrial.com

It caught my attention, to say the least.  Coming on the heels of my SSDI approval, I couldn’t help but know I didn’t have any other meaningful or productive work to do.  What does one do when not working?  I still hadn’t figured that out, then.  Plus, the tantalizing possibility of compensation for my time.  Extra money for more not-covered-by-insurance medical treatments!

It became an obsession.

Clinical trial.  I tried to find a way to make it work within the context of my life.  Clinical trial.  Hours and hours of thought.  Clinical trial.  Denial and hope all mixed up inside of me.

Because, dude.  Really, this project is outside of my ability.  Or, it was outside my ability when I first starting considering it several months ago. Really, a clinical trial?  Something new, something extra, when I don’t have the energy to wash dishes or drive to burlington?

Mary was quick to try to squash the idea.  She’s a very practical woman, and much more aware of her limitations than I am aware of mine.  When I mentioned it with the gleam of obsession in my eye a week after the SSDI approval, her first response was –  No!   She had a valid point – we just went through a nine month epic process of me leaving my job and getting approved for SSDI… can we just take a minute and rest?  Like, how about not adding anything until things have had a chance to settle for a few months?

Reasonable.  And every ounce of myself strained against her words.  The conversation confirmed what I already knew – if I wanted it to happen, I’d have to do it on my own. Unlike every other time she’s had a strong “No” over the past year, I didn’t immediate accept her judgement of the situation as correct, I didn’t immediately let it go.

No, I definitely didn’t let it go.

I searched on the internet for requirements, qualifications.  Yup, I can meet the criteria.  I called the 800 number, and did the pre-interview.  A week later I got a letter in the mail with contact information for the Montreal site, and reassurance that they’d call me within a week.

They didn’t call me.  Damn.  But I didn’t let that stop me.  Another week passed, no call.  With a few days of planning and intent, I was able to gather the energy to call them and initiate a conversation.  Success!  I talked with one of the organizers and learned what exactly the study involves.

Yup, it’s a serious shit ton of work.  Yeow.  And the compensation isn’t much in comparison.  Here’s the highlights:

  • Study runs 5 weeks.  Two weeks on-site in Montreal, three weeks at home.
  • Six days a week, I’d be doing a 1.5 hour exercise program twice a day (for a total of 3 hours a day).
  • Lots of trips to/from Montreal – a 2 hour drive each way.  About 3-4 trips before the study even starts, then a trip to go to Monreal for two weeks, then a weekly trip during the home portion of the study
  • Its a double blind sham study.  Only half the participants receive the treatment.

Oh, and I’d need to get a treadmill at home.

Some of the major stumbling blocks of the project include:

  • I don’t know if I’d be physically or mentally able to do anything focused for three hours a day, six days a week.  If I am able, every single routine and healthy behavior I’ve put together over the last six months is in danger of being thrown out the window to give all my energy to the clinical trial.
  • I can’t drive to Montreal.  I can drive consistently, now, about 30 minutes one way, but that leaves me 1.5 hours away from Montreal.  So I’d have to get a ride.  Every single time.  A four hour round trip ride… definitely not a casual bit of help.  All of the study is done during the work week, and my friends work during the week.  There is a local transportation organization for the elderly and disabled, but they reimburse their volunteers about 50 cents per mile – that would be a pricey bit of service to make this happen for me.  A definite roadblock to my conscience.
  • My current trip to Dartmouth Hitchcock – a two hour drive one way – leaves me nauseous and fuzzy and with a bad headache.  Even if I can get to Montreal, how the hell could I represent myself and/or participate?  I’d have to go the day before, so I’d have the evening to recover.  Each time.  An even bigger time and energy commitment.
  • Dude, only a 50% chance of receiving the treatment.  After all that work!

A reasonable person would have left it there and moved on.  I, apparently, am not a reasonable person.

What is it about everything saying no that makes me want to look at it further and figure out a way to make it work?  Why can’t I just accept a “no” from the universe and move on? Part of it might be that in the past, I used my will, my stubbornness, and my consistent neverending energy to bull through any obstacle between me and something I wanted.  Does the piece not fit?  Force it until it does.  Push push push and everything will be okay.  It’s this tendency that landed me with a long arc of recovery in the first place.

So, what should have been eliminated in the first few days of September, dragged into October.  In October, I got more information and still didn’t stop.  Early November, I decide to take the issue to my counselor.

Sometimes it is helpful to have someone who is unbiased and not brain injured to talk things through with.  Before my injury, I wouldn’t have considered myself needing help, but now I know I’m a few cards short of a full deck and I welcome the help to implement logical decisionmaking.

She suggests we do a weighted pros and cons list, and we do.  For a weighted list, not only do you list all the positives and negatives associated with an action, you also put a number – a percentage, or a number from 1 to 10 – about how important each factor is to you or how much of an effect it will have.  Here’s my pro/con list from that meeting.

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Pros and Cons list for considering whether to participate in the mTBI Balance Clinical Trial, 2016

I’ve changed the percentages a few times since that meeting, as my feelings evolved.  However, consistently, the Cons outweight the Pros.  But it’s close – most recent count says 360% Pro and 400% Con.  No wonder I’ve been going back and forth about this for months.

And still, I don’t let it go.  I get a surprise call from the TBI trial during a tired moment, and find myself scheduling a January 12th appointment with them. Huh.  More time passes.  I ask more friends for feedback.

I submit a medical records request in November to get my physical therapy records from 2014, needed for the clinical trial.  The records arrived this Monday, mid December.  And now they are sitting on my desk, waiting to be scanned and emailed to the study for review.

But I haven’t done that.  Also on Monday, I got a massage.  During said massage, I talked with my massage therapist about potentially participating in the trial.  As we discussed it, the holes in the logic of me participating made it ridiculous to even continue the conversation… because it was so obvious that it didn’t make sense for me to participate.

Huh.  But I still haven’t let it go.  Still…Have…Not…Let…It…Go.

I decided to check in with Mary about whether she would enjoy having the last two weeks of January home alone.  Since my injury, I’ve been home basically every evening – so she never gets time home alone.  I thought she’d be delighted about the chance to have me out of the house for a few weeks.

Her response?  “What are you talking about?  I thought we decided not to do the clinical trial.”

My internal response – Bullshit.  I will not be bullied.  You deciding that I’m not doing the clinical trial is not me deciding it.  I am an autonomous individual.  Instinct is to dig in my heels and do it just because she says I shouldn’t or can’t.  Luckily, I am aware of this internal dialogue and tendency, and instead say mildly “No, I haven’t decided whether or not I’m going to do the trial.”  As I see her anger rising, I divert “Let’s not talk about it now.”

I know it doesn’t make sense to do the clinical trial.  Really, I know.  I think my conversation with my massage therapist was the final straw.  But, still, I haven’t called to cancel my appointment, I haven’t emailed to gracefully step out of the program.  Why?  Why am I hanging on?

I have enough little gray cells today to consider some possibilities.

I like to contribute.  I like to be useful.  Losing my job was devistating.  Participating in a clinical trial would give some …?  public acknoweldgement of my contribution.  Something like that.  It would be a thing.  I was doing.  That made a difference.  Not much I do these days makes a difference to anyone except myself or Mary.  I am tired of living in such a small small world.

Boredom during winter is damaging and destructive.  I have been scared of the approaching winter, with no work or other overcommitted activities to distract me.  It would be so easy to fall into a pit of dispair and depression.  In reality, now that winter has arrived (as the snow storm outside my window confirms), things are going fine.  I’m fine.  I have plenty to do, and I have not been tempted to dive into any rabbit holes of negative thought.

Money.  Money money money.  Not being able to work = no possibility of extra income.  Being on SSDI is wonderful, and part of me struggles with the idea of being on a fixed income.  A fixed income, relying on someone else to pay my bills, sounds unsafe.  It is not my own work, my own effort, but another entity deciding whether I can afford something or not.  Maybe this is the biggest thing, the reason why I haven’t been able to let it go – it is something I can do, something I can control and make happen to bring me money.  Money for more alternative medical treatments that might help me heal.  A way for me to be in control of my life.

Then, there is the “what if” factor.  What if this is the thing, the treatment, that will make all the difference in the world?  What if this reconnecting of my brain to my body will lead to amazing leaps forward in my healing?  What if this treatment is what I have been waiting for and I didn’t even realize it.  What if this is the answer?

I like my life.  I like what I’m doing right now.  Is it everything I want?  Hell no.  But it is pleasant, and I am healing.  Doing this trial could destroy all that I have built.  My life balances on such a small fulcrum, one little new weight – or in this case a big weight – and the whole mechanism gets thrown out of wack.  The clinical trial could set me back months and months of healing, it could send me into a spiraling depression, it could do so so much harm.

So, friends, I’m not going to do it.  I am not.  I’m going to let the damn thing go.  Finally.  Looking at the things that have held me back from letting it go, I consider:  yes, I can let go of a feeling of being useful to the world at large.  Yes, the winter seems to be okay and I don’t need to add anything to it.  Yes, money is okay and if I don’t get the extra bit of cash my world will still turn just fine.

It is the last reason, that last possibility that burns in the pit of my belly.  What if this treatment would have made the difference?  What if it would have catapulted my healing to a whole new level?  What if?

what-if

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Unsolicited Assistance

I feel a rush of excitement when the mail arrives, that breathless moment while I sort through the stack and see if I have received anything.  Meaning me, like, as a person.  Not me the consumer, not me the potential money-maker,  not me the health care patient, but me – Kim.  And there it is, an envelope addressed to me that I don’t recognize.  Hey, I got mail!

I open it and read:

The U.S. Department of Education has received documentation from the Social Security Administration (SSA) showing that you may be eligible for a Total and Permanent Disability (TPD) discharge of your federal student loans.  TPD discharge means that the remaining balance of your loans would be forgiven and you would not be required to make further payments.

My responses include:

#1 Screw you! I don’t need any help.  I’m fine!

#2 So close!  I am so damn close to paying off my student loans!  Arrrrggg.

#3 Practical self – hmmm, I need to open-mindedly consider this opportunity.  Anything that can free up funds to pay for uncovered mTBI medical treatments is worth pursuing.

I am surprised and not surprised to hear from the Department of Education.  I had heard there was some program out there that could discharge my student loan debt.  I’ve had my student loans in forebearance for the last several years because of my injury, but as debts go they don’t loom over me or cause me to lose any sleep at night.  After several decades of paying on my student loans, here is what I have left to pay:

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$1800.  That’s it.  1800 frikkin dollars.  That I have been so so SO looking forward to paying off completely. Because I am so close.  And it would offer such deep and wonderful personal satisfaction to finish paying off my student loans, 23 years after I began college.  An action worthy of pride.

And it would have already happened if I hadn’t been injured.  I had planned to have them paid off completely by the time I was 40 (a year ago).  My mTBI said no!  My practicality (and perhaps my pragmatic partner) said if I don’t have enough money to pay my mortgage or my heat, now is not the time to pay a non-essential bill.  So, I haven’t and I still have student loans.

And now this opportunity.

As I read further, I find out why they contacted me.

Two months ago, when I received my Social Security Award notice, at the very end of the letter there was a section titled “Things to Remember for the Future”. That’s where they told me when they would next review my case.

Referring to the helpful pamphlet provided by SSA for those receiving SSDI, the review times are such:

  • Medical improvement expected – if your condition is expected to improve within a specific time, your first review will be six to 18 months after you started getting disability benefits
  • Improvement possible – if improvement in your medical condition is possible, your case will be reviewed about every three years
  • Improvement not expected – if your medical condition is unlikely to improve, your case will be reviewed only about once every five or seven years.

Guess what mine said?

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Of course, at that time, I had my usual responses to a suggestion that I am actually disabled and might be for a long time.

#1 This is bullshit – I’m fine!

#2 I’ll be back at work soon (next month, in six months, in a year).

Note here that reality has made me realize… yah, it’s going to be a long while before I can work full time again… if I ever can.

#3 Practical self – this is great.  Now I can really focus on my healing and not have to worry about government beaurocracy for a while.

But back to our story.  So, apparently, one way to qualify for a Total and Permanent Disability (TPD) discharge of my student loans is to get a letter from the SSA that – because they think I’m so fucked up and so unfuckinglikely to recover – they’ll review my case in 5-7 years.  Look at that.  I got one of those.  And I didn’t even have to try.

Fuck you world.

I’d like to reject the offer outright, but the universe dropped this opportunity into my lap and waved a sign – pay attention!  So I do.  Should I pursue discharging my loans?  It seems kind of foolish to go through such a process for $1800… but that’s the cost of one new type of non-FDA-approved mTBI treatment. Generally you need $1500-$2000 to even start the conversation on that front.  So, really, should I give myself one more opportunity to find some miracle cure that probably doesn’t exist?  Or, I suppose, one more opportunity to try a new treatment that could change my life and perhaps create some improvement, even though I likely won’t ever be my old self?

My pride says no.  But, it is a quiet no.  After three years of failing, of having to ask for help, of now being on a government program to financially survive… my pride is use to being set aside in the face of other realities.  Sigh.  I am deeply, truly blessed.  And sometimes I’d just like to again be that physically competent person with a good paying job and the option to do pretty much whatever I want because I have almost-endless personal energy resources… and where my pride gets to be a main part of my personality, helping but not needing help, giving but not needing gifts.  Oh well.  I suppose that is why I am classifying this whole injury as a personal growth opportunity.  An opportunity to live outside my comfort zone, to accept all assistance offered, to not do it all on my own.  A new chapter of my life that I expect will have as many new benefits as new limitations.

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Stella helps me consider my options

So, yes, I’m going to apply.  It’s a good energy day, so I read through the program requirements.  Seven pages of fine print later, I see the good and the bad of the program.

  1.  The Department of Education can discharge my loans, but first they will monitor my earned income for the next three years.  I need to make sure it doesn’t go above federal poverty level for a household of two (regardless of # of people in the household…weird).  That is about $1300 a month.  Pretty sure that will be fine, no worries there.  And as a taxpayer (ex-taxpayer?), I appreciate this assurance of an applicant’s need.
  2. Discharged federal loans are considered income.  In three years when the $1800 is discharged, it will be considered taxable income for that year.  Fine for me, a blip.  For someone with $60K in loans… devestating.
  3. If I apply for any student loan during the next three years, or if I make more than the cutoff amount, the discharge process will stop and I will again be completely responsible for paying off all of my student loans.  Reasonable.
  4. If after three years the sun comes out and I want to apply for a new student loan, I have to see a doctor, get a form filled out saying I’m able to work enough to make money, and agree that I won’t try to discharge the new loans under the same injury or illness that disabled me the first time.

A pretty reasonable program, all things considered.  I filled out the one page form, signed it, and mailed it out.  I didn’t even have to provide documentation, because they already received it from Social Security.

If all goes well, at the tale end of 2019 my student loans will be discharged and that responsibility will be done.  Strange to plan to still be so limited from an mTBI in 2019.  Very strange.  At the same time, after denying how damn long it will take for me to heal and return to work over these past three years, I’m ready to consider another three years might be needed before I can jump forward into a financially independent life.  I fully and completely welcome to universe to prove me wrong and allow me to recover fully over the next year.  Really, I dare yah.  Pragmatically, however, and as a scientist, I need to plan the future based on what the data says.  And right now, the data says – Kim, it’s going to be a while.

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