Brain Injury Awarness Month

I am a brain injury survivor.  It has changed my entire life.  

Many brain injuries are avoidable with precautions.  The severity of injury can also be reduced.

Every brain injury damages the brain.  Most people recover fully but many are left with long term, possibibly life long, disability,   ranging from mild to severe.  I experience speech aphasia, difficulties filtering sensory input, seizures, loss of endurance, depression, and anxiety.  They cost me my career and many of my hobbies. I still work on rehabilitation and hope to return to work in the future.

To learn more, visit Brain Injury Association of America

Sometimes it’s Not Screaming

Sometimes  they’re silent

Voices silenced by pain and

Suffering.  Scream out!

Hear the loud silence

The voices of the damned to

Loneliness and pain.
It can be too much

Dreaming of never ending sleep

But staying awake

A Glimmer of Gold or a Fool?

This week I had yet another round of tests for the brain injury.  Again.  More tests.  I am a freaking lab rat.  Tested and tested.  It seemed not a lot of imformation came from all those tests.   That’s the thing about brain injury.  Every one is different and it is a challenge to figure out what is going on.  For me, it means frustration followed by more tests.

It’s crazy.  You start doubting if it’s for real or are you just messed up mentally and emotionally?  Maybe all three? Since my injury, I had doctors tell me it was nothing but the pain medication (while I had unequal pupils).  Two neuropsychs: one stating I’m depressed and scoring low because of it; the other diagnosing ADD and slightly lower mental functioning than baseline.  Right.  I scored an IQ of 90. My pre injury IQ was 140.  Then, there was one who thought I was malingering.  Others who just had no idea what was going on.

And tests kept coming back normal.  A CT scan, two MRIs, a normal EEG and an unusual EEG.  But, it was inconclusive on what it meant. (I was eventually diagnosed with a seizure disorder)

So, treat the symptoms.  I had so much physical, vestibular, speech therapy. And an employer who told me that I can do my job if I just tried harder.  I worked  my ass off in therapies, on my own, at work and felt like crap and totally exhausted all of the time.  I hit the ceiling of improvement and was just trying to hold on.

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I kept thinking it was just in my head and was getting more and more frustrated, angry, anxious, afraid that I just couldn’t be like I was before.  I was crazy. I could be normal again if I really wanted it.

Im lucky to have a good friend who knows something about brain injury who advocated for me.  I also have a great neuorologist who referred for the bemoaned testing to try to get a handle on what was happening.  And a primary care doctor who knew something was wrong.

Last year, my neurologist ordered- you guessed it- tests and referred me to see a neuorologist in Spokane specializing in seizures and migraines. As part of that round of testing, I had another sleep deprived EEG, one of the two neuropsychs, and a weighted MRI.  At this point, I figured nothing would show up because, with the exception of the unusual EEG, nothing ever did.

It was a twisted sort of relief that the weighted MRI showed areas of damage.  It bloody is in my brain!  I have brain damage! Uh, that isn’t a good thing….. But, it was something I could see.   And the specialist confirmed the diagnosis of complex partial and absence seizures.  Those weren’t in my head either.

This year, my neurologist found out about a program in Portland specializing in brain injury rehabilitation.  Oh, fuck! Another round of testing- again.  Every time one is ordered, my anxiety goes up.  I still question if my symptoms are real or I’m just not trying hard enough.  Or they are in my head.  I really didn’t want this but was pushed into it.

the testing was brutal.  It was a bit different this time.  They weren’t trying to diagnose anything in a way.  It was a given that there was actually a brain injury.  This was about identifying problem areas to work on an what strengths I have already.

Head Pain concept

Head Pain concept

We did my staffing today. I was scared shitless.  It’s frightening not knowing.  Do I want to know?  I was so scared they wouldn’t find anything.  That would mean it’s in my head.   It was a strange experience to have a group of professionals outside my neurologist recognizing the ongoing issues.  There are issues.  I like what they have to say. I was really worried that it would come back that all my issues were mental: depression and anxiety.  They’re normal and not what is causing my issues.

Heres the stupid thing.  A few years ago, I would have been all over this program.  Now, I’m not sure. Why bother?  I’ve already lost almost everything that I loved to do.  My best effort for four years didn’t fix it.  What’s going to be different now?  I’ll never get thosr things back. Theyre gone. I’m finally comfortable and feeling safe in my routine and home.  My cat, my ferrets….  I don’t want to feel unsafe again.   I don’t like being outside my comfort zone.   How do I keep myself safe surrounded by strangers away from the town I know?

not to mention: what do I do with Brigid and Kaliyah?

Nope.  I just don’t really see the point.  Too late.

Is it a chance for gold?  Or just another fool attempt?

would I be a fool for going?  Or for staying away?  I’d be a fool to hope.

 

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Word of the day Two

Humility: the quality or state of not thinking you are better than other people : the quality or state of being humble.

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For me, humilty is treating someone with respect, no matter their job, religion, or other factors.  I still struggle with this concept, especially around issues of religion.  It’s fine to disagree but remain respectful.  My beliefs are not superior to anyone.  What abilities I have don’t make me better than anyone.  I might run faster than other people but that doesn’t give me the right to critize someone who is overweight or not in shape.  My education doesn’t make me better than the person working in fast food.

Everything we have, we can lose.  All that remains are ethics and morals.

What is humility for you?

Two Dollars and 26 Cents

We all take things for granted.  Things like basic life skills: washing,  getting dressed, eating, walking,  etc.  After brain injuries, many people struggle with Post Concussive Syndrome.  The after effects of our brain injuries stay around.  Sort of like the smell of my running shoes in the summer.

Some  TBI survivors never function the same post-injury.  They need help with basic things. There is such a variety of how much people heal.  And it doesn’t matter if it was a “mild” TBI or one “more serious.”  A mild TBI is like “slightly pregnant.”  You either have one or you don’t.  The chances of after effects increases due the severity of the injury.


At times, it can be equally frustrating and funny what becomes a challenge.  Making change.  Really.  A skill I had in grade school.  I bought a snack and wanted to pay for it with some of the collection of change.  The amount? $2.26.  How many quarters?! What about these dimes, nickels, and pennies?!  Slowly I count it out.  Then again.  And again.  Totally confused.  Fortunately, the clerk knew me and gently helped me figure it out.  🤓  She is a psychology student.  It’s funny how the small things can be a challenge but other things still come easily.  I don’t think I’ll ever totally figure this out.

$2.26.

What do I do?

Before the brain injury I ran marathons. A frequent question was “What do you do on a long run to keep from getting bored?”  This was especially important when they found out I didn’t run with headphones. (I still don’t )

Running brought peace.  It was a time to get away from stress and problems. Quite frequently I found solutions to problems on the road.  My mind was freed from chewing over the issue and the sound of my heartbeat and the landing of my feet were calming and brought better focus. 

The scenery was also part of the enjoyment.  I live in a rural area.  Most of my runs were on less traveled roads going through farmlands.  The start of the Blue Mountains was always visible.  Even staying in town, I still saw the mountains.  I also did a lot of trail running.  That requires focus and good balance.  Trails are uneven.  You always have to pay attention to your footing.  One of the funniest things I did on a trail was a fall.  My foot slipped when  I was trying to avoid a huge middle puddle.  I ended up “swimming ” in it instead.  The trails also put me in nature.  I find connection to nature spiritually uplifting.  The scenery is golden.  A river, lots of trees, surrounded by hills.  At least it was like that where I ran often. 

  
I also thought of story ideas when I ran.  I usually didn’t write them down.  I forgot much of the story before I got home.  

Now, add in the challenge.  There was a lot of mental discipline to work out even when I didn’t want to.  There was a significant time commitment. It was challenging physically.  Running workouts and cross training pushed my body.  Then, racing not only against other people but also against myself and the time. This is more about why I enjoy running rather than how I amused myself, although there was a fair amount of planning for pace.

  
The “greatness ” is different things.  For some, it is starting to run or trying to become more healthy.  Or running a race no matter how slow or fast.  Greatness is overcoming the difficulties.

Today, my long runs aren’t nearly as far or long. But, even on shorter runs, I still need to be mentally active.  I do most of what I mentioned before but I can’t run trails anymore.  I added in a few different activities that target some of my weak areas in memory and flexibility.  I practice the multiplication tables.  Quite frequently, I have to “count ” to the next number because I don’t know it.  Another game I play is naming as many words as I can in different categories such as animals with the first letter of the name of the animals.  I also do animals in the same family. For example: ferrets, weasels, mink, and sea otters. Or breed of dogs and cats.  

Take time to do something you enjoy.  Don’t be afraid of trying something new or doing something you don’t do well.  The challenge is part of the fun.