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?

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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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Hyperbaric Oxygen Therapy (HBOT)

The weight of the plastic chamber rests on my shoulder as I strain to get the inside zipper completely closed.  After a moment, success.  I quickly roll onto my back and wait for the tube to inflate.  Slowly, the plastic structure that was a formless, empty sock when I crawled into it becomes a firm sausage of air.  I shift carefully on the padding, wanting to end up in a level state once the chamber completely inflates.  The chamber creaks around me as it moves from flat to cylindrical.  Shifting my hips, I remember the tubing for the oxygen being delivered to the mask I’m wearing.  90%-95% pure oxygen for my healing pleasure.  I realize that the tubing curled under my thigh as I rolled into the structure, and quickly adjust it so oxygen can flow freely.  The steady, pleasant flow of oxygen against my nose says all is well.

Once the tube fully inflates, the real action begins.  Pressure starts to build in the chamber, heading towards 1.3 atmospheres.  I can feel the increase in my ears.  An exaggerated yawn relieves the building pressure, like when I’m in an airliner gaining altitude.  My ears pop but pressure quickly builds again.  I grab my earlobes and pull down, then out until the next layer of pressure is released.  When that doesn’t work, I pull the top of my ears up, away, front, then back, until my body fully adjusted to the higher pressure.   Conveniently, I can control the rate that the pressure builds in the tube.  But, since my first few sessions where me and my body got to know the routine, I now let the tube pressure build as quickly as possible.  Efficiency and all.

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My first HBOT experience, in a larger chamber that I sit up in.

I know the appropriate pressure has been reached because the mild blow-in from the compressor creating the pressure within the chamber is drowned out by the moderately loud whistle of the pressure relief valve.  Strangely, exactly how much the pressure relief valve sound bothers me seems to vary.  I’m not sure if the noise level actually varies, or if it is simply my sensitivity that varies – but some days I barely notice it, some days I need ear plugs to keep from going crazy.

Size-wise, the chamber is comfortable for me.  I can’t sit up in it, but I can lay on my side if I choose.  Most important for my sense of freedom, I can bend my knees comfortably.  In fact, if I am careful I can pull my knees all the way up to my chest.  At 5’3″ tall, a smaller-sized hyperbaric chamber is completely reasonable.

While lying on my back for an hour, there are a limited number of activities available to me.  I can read.  But it’s reading on my back when I have to hold the weight of the book above me at all times (although I guess I could lie on my side… hadn’t thought of that).  I can play on my phone, or more specifically check my email and message people back who have messaged me, or see what the weather will be for the next few days.  Screens are overstimulating, but for half an hour or so I’m good.  Most often, I rest with earplugs and eye covering and give myself Reiki.

That has been one unexpected perk of this chamber.  I’m stuck there, in one place, for an hour.  Usually, any time I have any hint of energy, I’m doing a task – fixing something, making phone calls, writing, gardening.  During HBOT, I can’t.  I might have energy, but there is no place to go.  So, why not do something helpful and healing during that time?  It’s not like I can do anything else.  That’s why I tend to give myself Reiki on a daily basis now, as I pass the time until I am free of the chamber.

Or, sometimes, I make videos of myself like here:

I’ve noticed that people who get my blog via email don’t get the youtube link, so here it is directly for your clicking pleasure:  https://youtu.be/7860uP-9bjQ

When I decided to giving HBOT a try, I made a commitment to being open.  Being open means not just being physically open or financially open to trying a new treatment, it also means being energetically open.  Being energetically open isn’t just a state of mind involving my brain, it is an energy, an attitude involving my whole self, my whole spirit.  And, as I said in my sleep blog here The Beauty of Sleep, this brain injury has made it important for me to communicate directly and repeatedly with my “self” – mind, body, spirit – in order to get a message across.  Every time I get into the hyperbaric chamber, I remind myself that I am open and that I want to experience the maximum benefits possible from each treatment.  That messaging is an important part of the healing process, because, for me, fatigue and impairment makes it easy for my mind/body/spirit to miss stuff on all sorts of levels.  And I definitely don’t want to miss any benefits of this therapy.  So I remind myself of my intent – to heal completely and to thrive.

So far, I’ve had 13 treatments.  The wisdom I’ve heard is that I’ll need 20-40 treatments to notice significant improvement.  A 2011 U.S. military study found positive results in veterans who had experienced blast-induced mTBI after a month of treatment, either once or twice a day.  Success stories I’ve read have similar veterans getting anywhere from 80 to hundreds of sessions and having benefits.  So, I need to be patient.  I’ve been at it two weeks.  I will reevaluate at the end of the year, and see if there are notable changes.

To help me remember how I feel each day, I have started a daily HBOT log, noting any large or small differences I noticed before and after treatment.

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The importance of a daily journal for peeps recovering from mTBI cannot be overstated — I have four different daily ones going now.  Anything I want to remember, I write down.

So far, I have observed a few effects of HBOT on my body and my functioning:

  • The HBOT makes me hungry.  I need to eat at least a few bites of granola bar right after a treatment, even if I had a big meal before.  Then I need to have a substantial meal within a few hours.  If I don’t, I’ll have a meltdown just like I would if I didn’t eat all day.
  • I’ll get a headache if I decrease the pressure of the tube too quickly, if I don’t wear earplugs during said depressurization, or if I don’t allow transition time between crawling out of the chamber and driving.
  • Being in HBOT for an hour replaces my need for an afternoon nap.  I finish a session positive and energized instead of waking from a nap grumpy and sluggish.  A very fine thing.

Other benefits?  Cognitive benefits?  I haven’t noticed any, yet. I remain hopeful and open.  Energy increase?  Maybe… slightly… it is notable that I no longer need an afternoon nap (although I rest for an hour during HBOT) and that I’m able to drive an hour round trip every day.  As I’ve been told, effects are cumulative.  I expect as I get into the 20s, 30s, 40s in my number of treatments, changes will become more obvious.

When doing a new treatment, more than one thing changes.  I keep that in mind as I evaluate the effectiveness of HBOT.  Am I feeling more energetic because I am giving myself reiki every day, or because of the treatment?  Am I feeling so positive because I am excited about a new treatment, or is it the treatment itself?  I don’t know.  Really, I can’t know at this stage.  As I evaluate HBOT, I maintain awareness of all of the changes in my behavior, not just the addition of HBOT.  And I remain cautious classifying improvement as real, after so many months and years of being on a blind rollercoaster of recovery.

So, for another month or so, I’ll be giving HBOT a try.  I’ll report back on my experience, let you know if it changes my life.  I am happy, I feel blessed, that I have had the opportunity to try this therapy, one that seemed so out of reach to me even six months ago.  To have the universe align and provide an HBOT site within my driving ability (30 minutes) and that won’t absolutely decimate my ability to pay my bills ($100/wk) … that is amazing.  A blessing.  A wonderful thing.  I thank the universe, the Goddess, and all the wonderful people who have made it possible for me to receive HBOT in a condensed and focused way these last few weeks, and in the coming months.

May you all have a similar experience of being blessed in your healing.

Que nunca tengas hambre.  Que nunca tengas sed.

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The Beauty of Sleep

I sleep well, almost every night.

Let me give you a moment to process that and really appreciate how amazing, powerful, and life-changing that is.

I sleep well almost every night.

Ever since I hit my head in January of 2014, I have struggled with sleep.  Usually it goes in cycles – months where I can’t get to sleep, or can’t stay asleep, mixed with weeks were it all goes well and life proceeds normally.  For the past few months, though, I have been consistently sleeping… through the night… most nights.

I’ve written so much about this challenge, over and over again, in draft blogs I (apparently) never finish.  The irony being that since I’m not sleeping well, I don’t have the energy to write a complete blog about not being able to sleep well.  And so a review of my recent blog posts show that I haven’t published anything about my sleep difficulties.

Sleep comes up again and again in my (draft) writing, because it is so miserable when I can’t sleep.  It’d be miserable for anyone, true.  For someone recovering from an mTBI, it’s something more.  One night of poor sleep, and I don’t have the energy to garden.  Two nights of meager sleep, and the next day I can’t drive three miles to the store for some milk.  A week of waking up repeatedly and not getting back to sleep, means I am irritable and liable to explode at Mary for no real reason.  A month of crappy sleep, and my life just keeps getting smaller and smaller.  I’m certainly not improving, my intellect is not returning, life feels overwhelming, and the slightest problem can have me yelling, desperately wanting to throw or crush things, and crying as though my heart is breaking in the space of three minutes.

So, FYI.  Sleep is important to me.  Extremely important.

Pre-injury, sleep wasn’t a “thing”.  It wasn’t a problem or an issue or even worth talking about.  I’d go to bed, close my eyes, and fall asleep within 20 minutes.  I’d sleep through the night and wake up at around 530 am ready to jump out of bed and enjoy the day.  There would be times, maybe three or four times a year, where I couldn’t get my brain to slow down or I was really upset or worried about something and couldn’t sleep.  But, as I said – 3 or 4 times a year.  Whatever.

Post injury, there are some sad truths that Mary and I have had to accept and adapt to.

Any movement in bed or nearby can wake me up, so sleeping with someone through the night just doesn’t happen.

I toss and turn and twitch a lot in my sleep now, per Mary’s report, so it’s hard for her to sleep next to me.

Any noise, any light, any strange ache or pain can be just enough to keep me from being able to sleep.  So I close the windows to decrease the traffic noise. I close the shades to keep out the light.   I have an eye cover for when I want to sleep past 4 am in the summer or 7 am in the winter.  I take ibuprofen when I have an achy hip or sore shoulder, to give myself one more chance at good sleep.

Adapt, adapt, adapt.  That’s what you have to do when circumstances change, right?  When my needs, reactions, reality changed, Mary and I have both had to adapt. Eventually, we had to acknowledge that this isn’t going to change soon… so Mary bought a proper bed of her own and we sleep apart every night.  Every night.   Maybe it will be this way for another year.  Maybe for five.  Maybe forever.  Can’t know.

But, back to the good stuff.  I’m sleeping through the night now,  and it is a wonderful thing.  It feels good to wake up in the morning having enough energy to be excited about the day.  Waking after a good night of sleep, I feel a little internal lift when I think about the future, about life, about the first few steps of my day.

I have tried a number of things over the years.  Some worked.  Some didn’t.  I haven’t taken any prescription medication, though, nor any sleep aids.  Sleep aids don’t allow you to have a natural cycle of sleep… and the natural cycle is important for healing, particularly the first hour when all the brain repair happens.  The prescription medication offered was a daily, low-dose SSDI depression medication that just wasn’t a path I wanted to walk down. Neither of those options seemed like long-term, healthy, winning ideas to me.

So here is what I do instead:

  1. Proper Prior Planning

    Eliminate stimulates and reduce stimulation before bed.  No chocolate or other caffeine after 4 pm.  Really.  No sugary goodness after about 7 pm – it usually makes me feel crappy anyway.  Stop any videos, tv watching, phone use, computer use at least two hours before when I want to sleep.

  2. Tea

    I’ve been drinking tea to help me sleep for the past five or six months.  I use a variety of nervine herbs.  Nervines are herbs that specifically support the nervous system, often as a tonic to improve overall health or as a mild sedative to decrease stress and anxiety.  Like most natural remedies, it isn’t a direct – drink it and *bam* be asleep in 20 minutes.  It works more systemically, holistically, gently.  In the short term, the tea makes me feel pleasantly tired, more aware of my tiredness and how nice it would be to lay down in a warm bed.  In the long term, these herbal allies have gotten me to where I am now – able to sleep well, most nights.

    • My tea blend includes:
      • Chamomile – a classic
      • Lemon Balm
      • Any of a number of other mild nervines, as they are available, including oat tops, linden, passionflower, lavender, and catnip.  I have found stronger nervines like valerian root and skullcap are simply too strong for me and leave me feeling tired the next day.

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        My beautiful tea mix.

    • Boil water, steep for at least 7 minutes, then drink slowly as you relax for the evening.

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      Here’s the type of container I brew my tea in every night.

    • Be aware of where your herbs come from – quality is important.  I’ve been lucky enough to grow most of mine.  Your local Coop or Mountain Rose Herbs are excellent alternatives.
  3. Soothing activity 

    I like to do a little something before I go to bed, to relax my mind and fill it with something other than the worries of my day.  My current soothing activity is filling out numbergrids from printable-puzzles.com.  Numbergrids have no words to deal with, and no math is required.    I, of course, print the puzzles, settle down with my tea – alone – and relax before bed.

  4. Melatonin

    After tea and puzzle, I take one 5 mg, extended release melatonin pill every night right before I lay down.  I feel it’s nudge towards sleep about 20 minutes later.  Again, a gentle nudge, not an aggressive push.p1130418

  5. Direct messaging

    Ever since my injury, I find that it takes longer for my body or my mind to catch on to a change, and to adjust.  I have to clearly, bluntly, directly signal my body and my mind, repeatedly, that it is time to go to sleep.  I do this through the routines I follow – brush my teeth, make tea, drink it while I do my puzzle alone, make a hot water bottle if needed, then bed.  Once I’m in bed, I take the time to tell my brain what I want it to do.  Instead of crawling into bed being enough to signal to myself that it is time to sleep, I prompt myself directly.

It goes something like this.  As I lay in bed, comfortable and warm, I imaging a large chalk board in my mind and I write the word “SLEEP” on it.  At the same time, I tell myself to sleep.

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Yup, something like that.  Sometimes I write additional suggestions – like “rest” or “dream”

Every time I realize I’m still awake and thinking about something, I take myself back to that mental chalkboard, draw the word “Sleep” again, and tell myself it is time for me to sleep and relax.  Then I deliberately take three deep, slow breaths to stop any stress response in my body, and then think about the chalkboard again.  Sleep.  SLEEP.  sleep.

My philosophy is that my body and mind want to help, they want to do the right thing.  However, the messaging centers between my parts has been damaged so it takes longer for different aspects of myself to realize what is going on.  Whether it’s time to drive, or write, or go to bed – I need to tell myself multiple times and allow space and time for that to sink in and for my spirit to fall into alignment with my intentions.  Eventually it works.  And I wake up to either the sun rising or to my alarm.

So, for now, I have a stable foundation to build the rest of my day.  With my body getting the regular rest it needs, I am slowly feeling better and finding that I have more energy in the morning and after my nap in the afternoon.  Instead of clarity being the sole province of the early morning hours, I sometimes have a second round  of clarity in the late afternoon and early evening.  Another gift.

For all of those recovering from an mTBI who experience sleep problems, give some of my ideas a try. If trouble sleeping is a regular affair, talk with a doctor.  They can help you identify any holes in your sleep hygiene, and help identify if something else might be going on, like sleep apnea.  I am not a medical professional.  This advice is based on my experience and may not work for you.  Always consult a medical professional before starting any herbs or other supplements.

So, friends, celebrate with me.  Right now, and hopefully for the coming years, I have found a complex and involved dance that gets me what I truly want – a good night’s sleep.  I hope as time goes on and I continue to heal, I won’t need to be quite so careful in preparing for bed.  Perhaps, someday in the future, I’ll be able to lay down with impunity, with the woman I love, and sleep easily through the night.  That, my friends, is where I plan to be before the end.

Blessed be.

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