Dancing Upside Down

Who Do I See I Am?

When I started writing here again I thought I would not be writing much related to having had a TBI.  I think I thought I was "through with that", moving on or moved on past adjustments due to the TBI.  I truly didn't think I would have much else to say.

Boy! Was I ever wrong!

It is not that I set out to write blog posts about the TBI.  I am simply writing the thoughts and experiences I am having.  However, those thoughts and experiences do reflect and relate to the changes.  I am still in a period of adjustment to the new me.

I keep expecting myself to be the old me.  I keep feeling like I am brought up short when I am hit again and again with a change (aka a brain hole). 

My TBI is mild.  If you were to meet me you would never know I had had a TBI unless I told you.  I seem very normal. And I am very normal - to a point.  Even as I am "struggling" with things, if you were to observe me you would just think it is how I am and never dream there has ever been a big change. 

The funny thing is, that very "normalness" is what catches me up.  I talk, move, and seem so normal - I mean even to me.  I seem like the me I have always been so it is sort of a surprise when I step into a hole; when things don't work the way they used to.

It is hard to put into words all the things that are different; largely because the changes are subtle.  The obvious ones to me are things like realizing that I have to write everything down.  I call my day planner book "My Pet Brain".  I can laugh about that.  But I do notice how I have to write everything down about my computer clients.  Otherwise I get one client's computer issue confused with the next, or what I have done on one and not the other, etc.  I cannot count on my brain remembering details like those and keeping them straight.  The silver lining of this is that I am more organized than ever.  Organization truly does make life easier!

Other obvious ones are things like needing to do a "complete stop" and rest a couple of times a day.  Then there are the problematic items like going through periods of not being able to sleep or sleeping at odd times.  (Many of these blog posts have late night time stamps due to the insomnia.  I would prefer to write in the morning.)  And related is the extreme exhaustion if I over tax myself and the headaches if I try to think too hard - seriously!

You know, it strikes me that there are two things going on here.  I haven't yet really accepted the new me.  For one thing, I am still finding out who I am.  But the other part is that I don't want the new me!  When I am tired and therefore can't find words or keep my train of thought on a track people assume it is just the way I am.  I want to scream "This is not me!"  Now mind you, people do not seem to be overly concerned about these things when I do them.  And I understand that because those are the types of things everyone does . . . I just do it so much more!  But only I know that.

It is interesting to see what does and does not bother me.  I have a great deal of trouble keeping the days of the week straight - I mean remembering what day it is.  This week I scheduled two clients for Tuesday but in talking with them on Sunday evening I must have said something about seeing them "tomorrow".  I had firmly blocked out my Monday for other work and had no plans of going over to anyone's house.  I realized it late Monday.  One person was fine about it.  The other person was quite miffed and told me she hired someone else.  I just shrugged my shoulders at that one.  I know that days and time are a big hole for me and I am compassionate that I am doing the best that I can with that one.

However then I did a bunch of little goofs on not noticing the time and just some other very small glitches with a couple of clients and that I got upset about!  I can handle the big goofs but these small ones that just keep happening add up.  This is not like me - the me that I was!  And more than that; In my book that sort of behavior, ditziness and sloppiness, is unprofessional.  Its letting details slide.  I am a detail person by nature so that is really hard on me.

This blog is a little over a year old.  I started it a year ago December just as I was getting officially diagnosed with the TBI.  The first couple of months worth of posts were about coming to grips with the reality and all that the correct diagnosis finally explained.  Then there were the intensive months of therapy at CORP-TBI at Harborview Medical Center in Seattle.  I wish I had written more during that time but I was semi swallowed by the program, then getting ready to leave Washington for this 6 month stint of living with my mom.  (CORP-TBI is Comprehensive Outpatient Rehabilitation Program for Traumatic Brain Injury.  GREAT program!!)

Now I am in a brand new chapter of "Life After TBI".  I am reentering the work force.  I am away from the CORP support system but I am now in the semi-safety net of having a place to live for a few months while I explore this new me. 

Not sure what else to say so I am going to end this here.  I am not happy with this post but want to have it out there and done with.  However, I am sure this is not the end of the subject.

In my Face . . . and my Heart

One of the remaining effects from the TBI is that I have "no filter". I cry at commercials.  I tear up when any strong emotion is felt.  If anyone else around me is feeling a strong emotion or crying, I cry too.  I can't hold it back. 

When there is discord and tension in a TV show it is so unbearable that I leave the room.  I feel it as if I was there - as if I were the characters or as if I was an invisible person standing between them and absorbing the tension from each side. 

Some filtering mechanism is broken and not yet repaired or rerouted.  I don't know if I will get that back.  I may not. 

There are some beneficial results from the lack of filter.  I am sure that it is what helps me to be more vulnerable, more real, more present.  I used to try to "keep it together" at all times.  Now I can't.

But on the negative side it puts everything in my face . . . and in my heart. 

With the horrors of the Haitian earthquake that is not a small thing.  I have been feeling very down for the past few days and I truly think it is because of what has happened and is happening in Haiti.

How do I separate from that?  I don't know.  The filter is broken.  I can try to "think my way out" but that has no effect because what is happening is on the feeling level.

This is no small thing.  I have been showing some of the signs of depression again.  I cannot slide into depression every time there is a catastrophe in the world.  I suppose I could go out and take a walk when Mom watches the news but that feels like I am burying my head in the sand.

I wish there was something I could do to help the situation in Haiti.  But I do not possess a magic wand . . . and a magic wand is about the only thing that could change that huge of a disaster. 

So what can I do?  For Haiti - not much other than donate some money  which I have already done. 

I think the Haitian earthquake was just a final straw to a lot of downward feelings I have been having.  Hmmm . . . as I write this I realize that most of the things I am feeling down about are "current affairs" from the news.  Maybe I really do need to stop watching it.  But the items that I am feeling down about are also real and a part of this country and this world I live in.

I started to write about some of the things:  The economic downturn, the greed of upper management of the major banks, the willingness to make money off of people - which is very different from making money by being of service to people, how broken this whole economic system is, how broken our government is, how much power the conservatives have (that is frightening), all the lying that is going on in the political arena, etc.  But I decided not to write about them.  I feel all the big stuff is truly hopelessly screwed up.  Writing about it only upsets me and makes me feel even more hopeless.

There is a similarity here.  In all of the above the issues are way beyond me, way beyond anything that I can fix or even impact.  Maybe that is part of the filtering that is broken.  The ability to put things in their proper place, proper distance is missing so all of it feels close; right on top of me.

I know that I am not alone in feeling impacted by the Haiti disaster.  I just have no measuring stick for how what I am experiencing compares to others. 

Interestingly, just now when I checked my Inbox there was an email from a Biznik member George Haung.  This Saturday, January 15th, from 9:30-10:15 am PST, he will be hosting a discussion group (which people call into) that will participate in a brainstorming session about what we can as group of "generous entrepreneurs" might be able to do to help turn this situation into something that elevates the economy and confidence of Haitians and creates a ripple effect across the globe for collaboration and connection at a heart-centered level.

George is encouraging people to pass the word on to other like-minded entrepreneurs.  The call is free, but you'll need to register to receive the dial-in information: www.freedompreneur.com/consciousleaderpreneurship

I am going to call in and give a listen. Maybe it will help me deal with the feelings a little more.  I think writing in here has helped some.  At least I am clearer on how this lack of filter is affecting me.

The thing is, not everything is bad in MY life at all.  In fact things are quite good.  A little scary at times, but over all things are going well.  I have started doing some paid work.  I am enjoying being in Florida a great deal.  My Mom and I are getting along amazingly well.  (I am living with her this winter season since she had a fairly rough year in relation to her health.) 

I don't understand why this lack of filter can cause such an imbalance.  The sadness was really taking me over. 

One of the reasons I wanted to write here tonight was to see if I could turn things around.  I am going out to coffee with a Match.com guy tomorrow.  I would like to be more upbeat than I was feeling earlier tonight. 

You know, the thing is, I have gotten out of touch with my connection to a higher power.  I guess in some ways that is hard to square with the suffering going on in Haiti.  But that is not mine to judge.  I firmly believe there is some force that helps me out in my life.  I need to look to that to keep me more in balance.  The thing that is difficult for me is that I feel guilty having a good life when others are suffering so.  But again, that is not mine to judge.  If I was supposed to suffer like that I would be there I guess. 

So, on that note I think I am going to say some prayers of thanksgiving and go to sleep.

Headaches!

I am on day 5 or 6 of a head ache that will just not go away!  So this morning when I was skating around on the web (because I was feeling too lousy to really concentrate on anything) I came across a new sketch by Jeff Gregory at Jagged Smile. It seemed to fit!

And then one day it happened. In a single instant, all the doctors’ theories about the cause of Mel’s headaches were proven wrong.

Footnotes:

1. The is cartoon entitled "Blaah"  by Jeff Gregory of Jagged Smileand is used with permission.  I love his blog and his cartoons! He continue to amaze me with what can be done with a ball point pen!

TBIQ

This post was actually part of the post: High IQ is Overrated! I started writing about High IQ out of my own frustration in trying to deal with this fricking brain injury. One of the big drawbacks of being "gifted" is that the brain injury was missed.

On my first appointment at CORP-TBI the doc told me that they frequently see people like me: someone who has a brain injury but it was missed for a long while because we "present well".  She went on to say that she thinks people with high IQs sometimes suffer the most because they feel the gaping hole of the injury more than someone with a more normal IQ:  The holes simply can go deeper in someone with a high IQ because there is more "space" to fall through.  Therefore, the holes may be more noticeable and more painful to the patient. 

However, even though the caregivers at CORP TBI understand on many levels, I still had the experience yesterday of testing in the high normal level on a few tests that I know I did not do as well on as I would have pre-injury.  I feel the frustration of that even if the cognitive therapist was impressed with the results.  

I do not know how to suddenly go from operating at a high level to a normal level. My normal was not normal so normal is foreign and feels less than.  I am someone who has always striven for perfection (which happens to be one of the traits of high IQ) so to do less than perfect or less than some high standard feels like failure or at least poor and lacking.  

The big thing for me is that I distrust myself.  I no longer have the brain stamina to operate at a highly functional level.  Though I can perform well in some areas I burn out easily. 

Burning out can have catastrophic results.  I rear-ended someone last week which is the first time I have ever caused an accident.  And I know it was because I had done too much that week so that my brain was fatigued.  Therefore I could not stay on task and pay attention to the traffic.  I am now terrified to drive in the city - not because the traffic scares me but because I distrust myself.  I had a brain lapse and I fear it can and will happen again.  If I had caused the accident by getting distracted by something legitimate; something that was truly distracting I might not be as upset.  But I simply looked away.  I think it was just that my brain was too tired to stay focused.

The other thing for me with now having a brain injury is that all my life I have sort of "winged it".  I have relied on my ability to quickly come up to speed on anything and everything.  I have jumped careers, jumped industries, (jumped freights too, but that's another story) and worked in many jobs that required a degree that I did not have (like RN or an engineering degree).  I never obtained a label; some kind of handle that people could grab onto and know what it means; something I could grab onto to hold me steady or bring me back to myself.  Now I am paying a price for that.  It would be far easier if I had a degree, job title, or identity that I could fall back on; some place to start.

In relation to my brain injury, having a high IQ is a mixed blessing.  It contributed to the situation of the correct diagnosis being missed for a long time.  It accentuates the sense of what has been lost.  However, it also enables me to develop successful compensatory behaviors with some modicum of ease and it allows me to "appear normal" or in the doctor's words "present well".

The Unbroken

There is a brokenness
Out of which comes the unbroken,
A shatteredness out
Of which blooms the unshatterable,
There is a sorrow
Beyond all grief which leads to joy
And a fragility
Out of whose depths emerges strength.

There is a hollow space
Too vast for words
Through which we pass with each loss,
Out of whose darkness
We are sanctioned into being.

There is a cry deeper than all sound
Whose serrated edges cut the heart
As we break open
To the place inside which is unbreakable
And whole,
While learning to sing.

                                        -Rashani

This Too Shall Pass

I feel so very confused as to who I am, who I am not, and who I should be, and who I can be.  I want to know where the brain holes are so I can avoid them.  I want something like a map to a mine field.  I want to know exactly what is not working.  I want to know exactly what I need to avoid.  I want to know what I can do, and do well.

In reality that is what this time period is about: finding the holes, labeling them clearly so I can avoid them and mapping out new routes to still get to the desired destinations.  The thing is I want this time period to be over!  I want to be on the other side of it.  

It is a painful place to be because it is scary, frightening, and also fairly lonely.  I know friends are very tired of hearing me talk about trying to figure the MTBI out.  I apologize to all and any of you about that.  (I do not apologize for writing about it because this is what the blog is about and it is your choice to be reading this!)

I look normal.  I seem normal.  Not only to my friends but to me too!  I keep expecting myself to be normal just as they do.  The confusing thing is that often I am "normal" and sometimes I am not. 

The inconsistency is part of the difficulty.  It is confusing to me as well as to everyone else.  And for those who do not know much about MTBIs I think it may even look like I am pretending to have difficulties or maybe exagerating them to get attention or that I am faking it.  But that may also just be my critical internal voices being noisy.

To give an example of the inconsistency, I have been part of a seven member steering committee for over a year.  I think in that time I only missed one meeting due to forgetting it and even in that instance I came late.  This past Monday we went out for a celebratory dinner.  I almost missed it.  I have had the dinner plans on my calendar and looked forward to it for a couple of weeks.  But I was having a bad brain day and completely forgot about it and I forgot to check my calendar.  At the end of the day I went uptown for two things: pick up a prescription and some printing.   just as I was leaving the pharmacy one of the other steering committee members walked up to the counter, saw me and said "I'll be right there."  I looked at her blankly for a picosecond and then remembered our dinner date.  I hightailed it over to the restaurant and had a great time with everyone. 

Can you see how strange it seemed to them that I almost missed it.  "Why didn't you check your calendar?" I forgot.  "Well why don't you just check it every morning?"  Right!  I can't explain to myself why I can stay organized enough to check my calendar some days and not others. I sure as heck can't explain it to someone else.

This has turned out to be an entirely bad brain week.  On Wednesday I was supposed to pick someone up at the ferry in the late evening.  I had thought about it and remembered it all day.  But by late evening I was tired.  I was on the phone long distance with a friend when my cell phone rang.  I missed the call just because I did not get to my cell phone fast enough but then I looked at the number, saw it was local and decided not to call the number back.  Of course, it was the person I was supposed to pick up trying to reach me.  (Luckily that all worked out because she was actually calling me to let me know that she had decided to stay overnight at her daughters since her plane had been so late.) 

The inconsistencies are not all about memory!  I can sit down on Tuesday and write proposed bylaws for an education foundation.  I can put out a good product.  I can then attend two involved meetings the next day and perform well. 

But then Thursday morning when my truck is dinging because the keys are in the ignition I can get totally confused.  It is like my brain suddenly starts thinking thru mud or thick insulation.  First I have to register that there is a dinging sound.  The initial response is confusion.  Then I figure out the dinging is coming from somewhere in my truck.  (Mind you, I am still in the driver seat with the door open while this is going on.)  Then I realize it is coming from the truck itself up around the dash.  Finally I realize that the dinging is coming from the truck because the keys are still in the ignition and I pull them out.

Now in reality that thought train still took probably under a minute.  And the friend who was with me at the time probably did not notice any hesitation.  However, it is exhausting when I have a day like that where every single thought has to be laboriously thought out instead of being automatic. 

Another thing that is frightening or confusing to me about all of this is that I TRULY do not know what I can do and what I can't.  Now as I am learning more about TBIs I am also seeing how many compensatory techniques I have already developed.  The compensatory techniques are a good thing.  I am not knocking them.  They are also part of the silver lining that I have talked about in previous posts.  But all the compensatory techniques I am now identifying are also pointing to the number and depth of holes that currently exist.  What I need to do is develop more compensatory techniques but first, as I explained above, I have to find and define the holes.

An example of a comensatory technique is that for years now I have put all written matter into columns.  I go to a lot of extra work to copy and paste long documents from the web into Word so that I can then put it into columns.  I know that columns are easier for everyone to read; that is why magazines and newspapers use them.  But I have been going to extremes; way beyond the extra mile without ever questioning why I was doing it.  I even journal by drawing a line down the middle of each page and write in two narrow columns.  The reason of course turns out to be that with a shorter return distance I can land on the correct line each time I complete reading one line and move my eyes over to the left to start reading the next line.  If I do not have things in short columns I need to use my finger to read.

People knowledgeable about brain injuries are sort of being my life-ring right now.  I recently have picked up a few books on the subject too.  All of that is helpful.  But I still feel pretty lost . . . well not lost actually; that is not the right word.

It is sort of like I am in this very long hallway.  I am in between the me that I have been and the me that I will be.  Yes!  That is silly to say because that is true for every person and every second.  What makes this different is the very long hallway.  There really is no way out till I reach the very end.  There are no other options here.  I have to go through this process of figuring me out.  I have to go through the process of finding out what I can do consistently for work now.  (That is hard enough for anyone in this economy but even harder when one has not worked for a long while and is approaching the whole thing with a different brain than before.)

I know I will get through this. I know that I will figure this all out.

I know that it is just a matter of time. And I know there is nothing I can really do to speed it up. Or, at least I am already doing everything I can think of to speed it up.

I know that not only is there an end to the tunnel, but that end opens up to a whole new chapter of my life. I truly think it will be a good chapter. I am get to bring a lot of good things into that life. I just wish I could be there now!

Uneasy Acceptance

It just occurred to me that all this may be permanent. 

That sounds very silly because Dr. Winslow and others have repeatedly told me that this may be all the brain healing I am going to achieve. 

Of course my response to Dr. Winslow and the others is sort of a quiet rebellion and determination; much like my response back in 1979 when Doctors told me I was going to lose 75% of the use of my hand.  I was not willing to accept that prognosis and fought like hell to get the use of my hand back.  Anyone who knows me now would never even be able to guess which of my two hands/wrists was injured severely.

I have not given up hope.  I still think that I can achieve a lot more improvement.  I am still working doggedly on getting the referrals to the help I need.  I have an appointment to be evaluated at CORP TBI group at Harborview in mid May (the soonest I could g.et in).  CORP TBI stands for Comprehensive Outpatient Rehabilitation Program [for] Traumatic Brain Injury.

But this realization is different from being told something by doctors or other health care practitioners.  It’s like on some deeper level I suddenly got it that this really may be as good as it gets.  I may forever be stuck with this sort of mental deadness at certain times of the day as well as some of the other disconcerting attributes.  If I have seen about as much improvement as I am going to get that is sobering.

In the previous post below I mentioned that I had gone looking for a quote in the Traumatic Brain Injury Survival Guide which then led to me reading the guide.  Well this current post was why I was looking for the quote in the first place.  Here it is:

The next phase is what I call uneasy acceptance.  This is when head-injured people learn where they stand and what their limits are.  They've learned after many failings and many times of paying for it, that they can only handle a limited number of hours of work or play.  They've learned to keep a consistent schedule and will stick to that schedule.  For example, they can work six hours a day, but realize that 8 hours is too much.  They've learned to say, "I have to deal with this head injury."  Does this mean they like it?  NO.  They're not happy about it, but they've learned to accept it.  Often individuals in this phase begin to use words like the "old" me and the "new" me.  Many of their old friends are no longer with them, but they've found new friends.  They've moved on to new relationships, maybe even new work, and they've basically said, "People have to like me for what I am."  That's "uneasy acceptance".²

Hope and "Uneasy Acceptance" are sort of coexisting in me; not at war with each other or vying for attention.  If anything the "Uneasy Acceptance" is jumping around in the stands rooting Hope and Hard Work on to greater and greater improvements and achievements.  It is like Hope and "Uneasy Acceptance" have become allies. 

With the possible beginnings of "Uneasy Acceptance" I find myself searching for the "Delicate Balance".I guess it is sort of along the lines of the well known Serenity Prayer:

God grant me the serenity

To accept the things I cannot change;

Courage to change the things I can;

And wisdom to know the difference.

When I wrote the words "Delicate Balance" I went looking for Tom Dundee's lyrics to the song by that title - which is why I had put it in quotes in the first place.  I am going to put the lyrics in right here because they turned out to be even more fitting than I had realized.Therefore, I am putting in a short YouTube of Tom Dundee singing the song as well as adding the lyrics.

Deep within there is a vision
That time is nothing but space,
And between every minute
and mile that is in it
Somehow there is a beautiful place.

And its all such a delicate balance
That the sport of infinity gives,
Expectations we have
can lead down the path
Where that devil discouragement lives.

I dreamed I was barer than naked
And it scared me so bad that I called,
"Help me back to the prison,
with the chains of the living"
Although nothing had hurt me at all.

And its all such a delicate balance
As it turns through the circles of air,
To worry does nothing but steals from the loving
And robs from the pleasure that's there.

Deep within there is a feeling
That love and understanding's the door,
And honesty is the key that was given to you and me
To open it and so many more.

And its all such a delicate balance
Takes away just as much as it gives,
To live it is real, to love it is to feel
You're a part of what everything is.

Footnotes:

1. The wonderful cartoon "Tis better to have loved and lost your mind" at the start of this entry is by Jeff Gregory of Jagged Smileand is used with permission.  I love his blog and his cartoons!
2. Glen Johnson PhD, Traumatic Brain Injury Survival Guide, p. 67 (approximately) 
3. The Serenity Prayer is most often attributed to Reinhold Niebuhr. 
4. "A Delicate Balance" is by Tom Dundee. Tom died April 18,2006 from brain injuries he sustained in a motorcycle accident he was in coming home from a gig. Tom, we miss you.  "A Delicate Balance" is available on multiple CDs that can be purchased on Tom's page at CD Baby.
   

The beginnings of "Enlightenment"

These past few days have been very eye opening in regards to this MTBI (Mild Traumatic Brain Injury). 

On Sunday I went to retrieve a quote that I knew was in the downloadable Traumatic Brain Injury Survival Guide by Glen Johnson, PhD.  I had not yet read the Guide so I decided to kick back and read a bit of it.

Wow!  I was not expecting to be so impacted by that simple book.  It was enlightening on one hand and jarring on another. 

You see, until very recently I have not had anyone helping me through this MTBI maze.  I present well and I did not have words to explain what was wrong so I was missed.  I am only now slowly getting to the right specialists.  Slowly because I am getting governmental help and the wheels do turn slowly! 

As I go along I have been trying to glean information about what is wrong and what I can do about it.  The Neuropsych exam was tremendously helpful in diagnosing the specific impairments.  The two appointments with the rehabilitation psychiatrist (over a 5 month period!) have also been helpful.  I am now waiting for an appointment later in May at the CORP TBI clinic at Harborview.  (CORP stands for Comprehensive Outpatient Rehabilitation Program.)

So what is the Wow!?  A lot of the Wow! was that so many things finally fell into place.  Johnson described so many of the things that are going on for me; and have been for years.

I will intersperse quotes from the TBI Survival Guide with the impact it has had on me. 

“In head injury, individuals with frontal lobe impairment seem to lack motivation and have difficulty doing any task that requires multiple steps (e.g., fixing a car or planning a meal).  They have problems with planning.”

That quote nabbed me because it explains a lot of what goes on for me.  I am definitely having trouble with lack of motivation, ambition, drive, etc.  And that is so unlike me!

Now people who know me and know how doggedly I am pursuing getting help for this old brain may laugh at me saying I am lacking motivation, ambition, and drive.  But the reality is I would almost be happy sitting on the couch and staring out the window all day.

The thing is, until I read about that on Sunday, I had not been able to put words to it other than to call it brain fog. 

The other thing that impacted me is I very clearly remember after the 2002 car accident that I could sit and do nothing for hours.  At the time I was just amazed at how calm and peaceful I felt.  I had recently left an organization that involved a lot of meditation and personal growth work.  So I interpreted the change through the lens of that teaching.  It never occurred to me to tie this change in my behavior to the car accident. Or to realize that calm and peaceful also included lack of drive,  motivation, and ambition, and lack of being able to plan – which planning is necessary for there to be drive, ambition, and motivation.

In fact, Johnson goes on to give an example a little later  “I've had some family members say "You know, the head injury actually improved him, he's not such a hot-head anymore."  If you listen very carefully, you're also going to hear "he's not as motivated anymore."  Remember, the frontal lobe plans activities as well as controls emotions.”

The worst thing about having a brain injury is having a brain injury!  Obviously, I am saying that tongue in cheek, but it is also true.  When I look back at all the things that I was doing to try to cope I am amazed that I did not know something was very wrong.  But the brain has to be working right in order to make an assessment like that. 

“The frontal lobe is also involved in organizing.  For a lot of activities, we need to do step A, then step B, then step C.  We have to do things in order.  That's what the frontal lobes help us do.  When the frontal lobe is injured, there is a breakdown in the ability to sequence and organize.  A common example is people who cook and leave out a step in the sequence.  They forget to add an important ingredient or they don't turn the stove off.”

Here I was rewriting recipes and highlighting the steps so I could follow them correctly; taking any kind of multi-step instructions and having to break them down into the smallest increments and then cross them off as I did them and refer back to the instructions over and over and over . . . but I never told anyone that that was how I was coping.  It just never occurred to me!  That seems so silly now.

Another interesting quote is “After you get a head injury, short-term memory isn't working, so information has a hard time getting to long-term memory. …People with head injuries have also told me "you know, time just seems to fly by."  The little events of the day are sometimes forgotten, making life "fly by" when you look back at events that have happened since the injury.”

I have lived back here in Washington for 6 years now.  Where did they go?  My experience is not exactly like the above description.  It is more like it takes extra mental effort to make sense of time.  Otherwise my time sense is somewhat jumbled.  For instance I have to logically think through year by year to have it make sense that a child who was in elementary school when I arrived here in Washington is now in high school.

I am getting short-term memory into long-term memory but not easily laid out chronologically.  I have to use chronological landmarks – like something obvious that happened in a specific year – then I can put things in their proper perspective.

I stopped reading the TBI Survival Guide at that poin because I had taken in about as much as I could handle in one sitting.  I just ordered a book called Brainlash: Maximize Your Recovery from Mild Brain Injury so there will probably be more posts about "Enlightenment" to come.  

Footnotes:

I do not have time right now to do the footnotes right so this is going to be quick!!

1. The wonderful pictures on this post are cards by Susan Mrosek. Check out Susan's whole line of cards at PonderingPool.com. The cards are used with permission. (Thanks again, Susan!) 
2. The TBI Survival Guide is linked above (and will be here too soon.)
3. Brainlash is linked above. Please note that I have not even looked at this book yet. A friend told me about it. I just ordered it from Amazon.

A "Bad Brain Day"

This is a good day to try to write about this'ol brain of mine and what is currently going on.

First off, my brain injury is mild (Thank Goodness!)  Most of the things that I have trouble with are things that happen to anyone some of the time. 

We all have "bad brain days" where we never quite seem to wake up and do silly things.  The thing for me is that when I have a bad brain day the fog is just a little thicker and it lasts a lot longer. 

For instance today I had a "bad brain day".  I had to go to Seattle for some appointments. I drove the usual route: West Seattle bridge to I-5 North, then I exit off onto a collector/distributor exit from which I take the James Street exit and go on up to Harborview Medical Center.  Now I have driven that specific route, taken that specific exit more times that I can count.  But today, due to my brain fog, I got confused by the signs and almost missed the exit. 

I made it up to Harborview and found parking right off. When I got on the elevator at the medical center I noted that there were 2 other people in the elevator and two floors were already selected; including mine which was the higher number.  But when the elevator stopped at the first stop I just automatically walked out.  I immediately realized I was in the wrong place and had gotten off at the wrong floor.  I turned around and got back on the elevator.  Most of my day continued like that!  None of what happened was extreme but it does get to be annoying.

On days like this it is like part of my brain is turned off.  The reason I almost missed the exit is that the automatic memory on the known route was simply not firing.  I was looking for the exit as if it was for the first time. 

I find it so strange that that happens on some days whereas most of the time I can remember fine. It makes no sense, especially in regards to the current research involving memory and learning. 

Richard Roche is a neuroscientist at the National University of Ireland who specializes in the neurocognitive mechanisms underlying memory consolidation.  He explains memory as  "The principle is that, every time a person encounters new information ... the information activates a neural circuit in the brain called a memory trace.  The repetition of this information reactivates the memory trace.  Each time it is repeated the trace is thought to grow stronger." ² 

I know that I know the route to Harborview well.  The memory trace is well established.  Most of the time the it functions fine and taking the right exit is practically automatic.  Why does it not fire at other times?  Why suddenly do I need to read the signs and look for the exit.  Additionally, why did the lack of memory traces firing last most of the day?

The brain fog finally lifted when I started crunching numbers working on a complicated tax filing.  (Not mine.  Mine was sadly simple but I am helping someone else who filed an extension and needed a fairly close estimate on the taxes they owe.)  The fog did not descend again for the rest of the evening.  I don't know if it was the focused concentration or if it was the type of concentration I was doing that flipped the switch but something did.

It is interesting that I can do complicated accounting extremely well and that the fog evaporated as soon as I engaged that part of my brain.  It is also interesting that I can do complicated accounting yet I cannot remember my multiplication table! 

The latter thing of not being able to do simple addition, subtraction, multiplication, or division feels very strange.  I understand that it is just a small spot in my brain that got dinged and needs to be rebuilt.  It is actually a fairly common symptom of brain injuries.  I can intellectually grasp that but the sensation is bizarre.  Something that I counted on is just . . . missing!

It is hard to describe what I mean.  So I will use a metaphor:

It is like I am walking across my yard at home. I have lived there for many years and know my own front yard well.  I’m just walking along and suddenly my right foot steps on what looks like normal solid ground but it crashes through the surface. 

What looked like solid ground was really only a thin crust of grass and dirt;  there is nothing else there – the ground gives way and my whole leg goes in up to my hip.  I hang there with the rest of me still on the solid ground and the landscape looking like it usually does but my one leg is dangling in nothingness; hanging in a gaping void where solid ground used to be. 

Now what makes the whole thing feel even weirder is that unless someone catches me right when I step on a gap no one really notices that anything is wrong.  I mean that figuratively in regards to this metaphor but also in reality.  For the most part most people would never guess that I am healing my noggin.

I am very, very thankful that I appear normal and fine; that I do not appear to have a brain injury. It is one less hurdle to get over. But this thing of appearing so normal and yet struggling at times does make me feel like I am I am multiple people. (No worries! I have not developed multiple personalities!)

Again, today was a good example of what I mean.  Here I am going around having to figure out all each of the locations today as if I had never been to any of them before; getting off the elevator on the wrong floor, forgetting to ask the doctor key questions (today it was the foot clinic - not neurology); having to ask directions to my new favorite coffee shop - Watertown Coffee . . . yet a short while later after the flip switched I am sitting in Watertown Coffee chatting with the owner about marketing strategies, doing someone's complicated taxes, and helping someone with a small computer glitch!  I know the owner of Watertown Coffee would never dream that I have a brain injury.

On another day and another post I will probably write more about that strangeness but I am way too tired to write more.  And you, the reader may be tired of reading too!

Just quickly, the sketch at the beginning of this post is by Linda Silvestri of SketchedOut.

Footnotes:

1. The wonderful cartoon Empty Head at the start of this entry is by Linda Silvestri of Sketched Out.  It is used with permission.  Thank you Linda!
2. Richard Roche as quoted by Scott P. Edwards in "Intuition, Memory Help Us Keep Track of Numbers" BrainWork Vol.18, No.5  November 01, 2008 
3. The last photograph is from an article about a sinkhole that appeared in a Fairmont, WV yard.  Amanda Pavlik "Sinkhole in Fairmont Yard", WDTV News, May 27, 2008.  

A Piece of My Mind

I recently met with the Neuropsychologist to receive there results of my Neuropsych Evaluation.  (As mentioned in an earlier post a neurological evaluation is the administration of neuropsychological tests for the formal assessment of cognitive functioning. Aspects of cognitive functioning that are assessed typically include orientation, new-learning/memory, intelligence, language, visuoperception, and executive-functioning."¹) 

Getting the results was a Good News/Bad News scenario.

The Good News was that they  identified parts of my brain that are not functioning well.  The Bad News is that they identified parts of my brain that are not functioning well!

I mean, being told how my brain is currently operating at a suboptimal level is no fun - thus the bad news.  But it is a huge relief to finally KNOW!  To finally have a qualitative and even quantitative assessment; to have some solid information on not only what is not working but also some guidance on what I need to do to work around the weak areas.  Already I can see an improvement because of the knowledge I gained. 

"So, what isn't working as well as before?" you ask. 

I vowed when I started this blog that I was not going to hold back and worry about what people think so even though this is hard I am going to write about it.  In fact, I am going to quote some of the report:

Current neuropsychological assessment indicates that Jane has a number of areas of significant weakness in the  presence of very high intellectual functioning.  These deficits include initial verbal learning (though with repetition, her memory function is quite good), attention, speeded visual spatial tracking, facile shifting of rules, inhibition of well learned responses and working memory.  However, several more areas of functioning were performed much more poorly than would be expected.  These included visual spatial memory, problem solving, and [on the spot] generation of ideas. 

...Jane's pattern of neuropsychological functioning is entirely consistent with multiple head injuries.  It is not uncommon for cognitive deficits to persist for many years after an injury.  Therefore it is likely that Jane will continue to show improvement in functioning.

The doc went on to talk about what I will need, at the moment, in a work environment . . . but sadly, I have run out of time!  I will come back to this topic when I can!

FOOTNOTES:

1. http://en.wikipedia.org/wiki/Neuropsychological_assessment