Hope, Courage, Determination


Hope. Courage.  Determination.  Without these three qualities, I would have quit striving for healing and improvement.

Hope is elusive.  There are dark spots in life where it seems nothing will ever get better.  The road of brain injury recovery is filled with potholes and valleys.  Yet, there are also the mountain peaks, where I see how far I have come.  Hope allows me to see the possibilities I still have in life.  It allows me to dream of the future instead of only seeing my past and what I lost.

Courage is facing fear and adversity without retreating.  Fear:  constant anxiety that never quite leaves.     It’s a backpack of rocks, weighing me down, but it can’t be dropped or left behind.  I can only work to reduce how much it affects my life. If I want to continue to function and have any sort of meaningful life, I have to ignore or work through the anxiety of being. Just being is anxiety.  I face it every day.  Some days are harder than others and there are days I hunker down in my house most, or all, of the day because I just can’t face being outside.  Yet, I still run and complete life chores.  It’s exhausting but needed.

Determination.  When I was first injured, I faced a long and uncertain recovery.  No matter how much I wanted to quit, I kept moving forward.  I still move forward.  I don’t want to stay where I am right now.   Running marathons before I was injured developed a strong sense of determination.  There are times in training and the race that the body is spent.  What is left is determination to complete the run.  Now, it’s determination to live life to the fullest, not allowing fear or uncertainty to trap me in the quagmire of fear.

I may never improve beyond what I have now cognitively and physically.  Hope.  Courage. Determination.  I may come out the other side stronger and wiser than before.


Ferrets Go figure

I have been owned by ferrets since 1999.  They are strange critters.  We spend money on toys for their enjoyment.  And this is what happens:

They climb Christmas trees.

They play in the box

They play in inappropriate places

They explore strange places

They “help” with cleanup

They explore gravity

They steal things

There are some things even a ferret won’t steal

But they’re so cute we love them anyway

My ferrets have made me smile at times life was at it’s hardest and I wanted to quit.  It’s just not possible to feel sad when a ferret is around.

Relationships and TBI

TBI changes everything.  My old self died in the car accident that led to my TBI. I am walking wounded, the injury to mind and soul invisible.  

My relationships with others changed.  Some do not want to accept that I am not able to be who I was before.  I struggle with tasks that used to accomplish, I frustrate easily, I have to spend more time thinking about how to answer questions or solve problems.  For me, daily function depends a lot on routines.  Same tasks, same time, same order.  Change something and I don’t adapt. 

It is frustrating when people assume I have the same abilities as before.  It’s worse when they think I am unable to do anything correctly.  For example, my sister and I arrived late for an appointment.  She insisted we were on time.  I am still capable of reading a digital watch and analog clock.  Another appointment, I was to blame for being late because I “was upset and couldn’t communicate” when I told her we were walking the wrong way.   Both times, I “freaked out” on her. I admit that I was angry and losing my control over it with her verbally.   Her response was to walk away from me.  She expects me to be who I was before.  Or to be so broken I can’t do basic things.  We don’t connect anymore.   

It is hard on both sides. New relationships have to develop with a familiar stranger.  I’m not who I was, in intelligence, cognitive processing, energy, emotional  stability.  Friendships and professional relationships need to be formed by who I am now, not who I was before.  This is difficult for both sides.  It seems easier to connect with people I either knew for decades before or people I met after the injury. I understand .  There are times I don’t like myself (or how I act) either. I suppose it takes patient people to stay in relationship with someone radically different. It is so much easier to relate to my friends, past and present, on FaceBook.  They don’t see me day to day and have to endure my temper issues or other problems.  Interacting with my ferrets and cat is so rewarding.  They accept me just where I am and love me anyway.  They’re also easy for me to understand.  

This article explains some of the changes in relationships after brain injury.  I experience many of the emotions and changes.  

Brain Injury and Relationships

Another Round of Testing

I spent the last week (May 26-30) in a set of tests related to my TBI and seizures.  I still have problems with thinking ahead, language, and stress tolerance.  It takes a long time to totally come down when angry. Two days of neuropsych testing focused on finding out just how much my processing skills were impacted.  The third day was a repeat of an EEG and and a MRI with contrast.  I met with the epilepsy specialist on the last day.  

I survived two days of neuropsych testing.  I spent the most part of two days in a total state of pissed off.  It was a graphic illustration of what I can’t do anymore. It was incredibly frustrating as I remembered that I used to be able to do the tasks easily.  I muttered enough f-bombs to annihilate a couple churches, broke a pencil in half, totally destroyed my room key, and broke a pencil in half.  I also kicked a wall hard enough to bruise my foot during a break. I think the toenail is not long for the world.   At least I didn’t try to knock the tester across the room.  I really wanted to.  I totally withdrew from him.  I didn’t keep eye contact because I was so angry at him.  It’s easier not to engage much.  I’m worried about the report he is writing. 

On the third day, I had a sleep deprived EEG and a full contrast MRI. 

The EEG was sleep deprived because fatigue sometimes lowers the seizure threshold. I was hooked up to 12 probes, including a heart rate monitor.  The gunk that holds the probes in place really itched after a while.  First, lights are flashed at various speeds, brightness, and patterns.  Then, you’re told to go to sleep, on command.  Right.  I was awake the whole time.  The test was in a quiet room with soft music playing.  They try to make it as calm and relaxing as possible.  

The MRI uses magnetic fields to take “slices” of the brain.  The contrast helps make the pictures more clear. It is loud and you are held still by packing around your head and a piece that comes down over your chest, face, and head. Prior to the test, they screen you for any metal in or on your body.  The magnet in the machine is so strong that it can move metal fragments in your body, damage pacemakers, and other metal.  The tech asked about earrings but wasn’t specific about all jewelry.  Since I wear my religious symbol tucked in my shirt to prevent people from reacting negatively,  I forgot I was wearing one with a copper thing to hold one of the charms in place. I think very concretely. He didn’t ask about a necklace. The test started. About 15 minutes later,  we had to stop because it was warming up.  The stop happened at a bad time, in the middle of one of the testing runs.  They had to take me out and remove the necklace.    They found the offending charm and metal hook and removed it from where it was stuck on the side of the machine. Unfortunately, the test did not restart.  I broke an MRI.  Not really- they rebooted it.   Then, back in I went. A few minutes later, they pulled me out to put the contrast in through the IV port.   The  MRI is much louder and cramped.  I fell asleep in the MRI the last 20 minutes.  I think the slight pressure of things they use to keep your head from moving were comforting.  I felt safer and more relaxed. 

I was exhausted after these tests.  My sister and I stopped by Big 5 to look for a pair of shoes that she needed.  This Sogn does not read “Assorted Beanie Boobs..”  Fatigue does weird things or I just have a naturally dirty mind.

On the final day, I met with the epilepsy specialist to get results. My EEG was clean, a common finding even with seizure patients. They only pick up activity near the surface of the brain if there is a seizure happening or is about to happen.  Even then, if the focal point is deep in the brain, it won’t show.  For some patients, a multiple day EEG is done in the Hosptial to try to catch one. My MRI showed areas of scar tissue. They are too small to try to remove.  He thinks there may be damage deeper in the brain where our current MRIs can’t reach that may be causing some of the other problems. They aren’t something to be concerned about.

The neurologist conducted a physical exam of neurological function.   Even here, my literal mindedness showed up.  Just after we talked about how the injury impacted my running (lack of endurance and sensory tolerance) he mentioned something about it being all psychological.  Really?  He quickly explained that anyone who runs a marathon must have a psychological problem.  Then I understood the joke.  He took the time to identify how I functioned before the accident, what changed after, and how I was adapting (or not). He was really supportive and listened.  We talked at the end about the results of the tests and what other treatments are recommended.  He is satified with my treatment regime.  My dose of Lamotrigine can still be raised if needed.  

Overall, I think the tests went well.  My past MRIs were always read as “clear.” In an odd way, it felt good to have something actually show up indicating an injury.  Maybe they can find something to help.  

Life with TBI : Lost and Confused

In the days Before Injury (BI), my life was different.  I completed a Masters in Social Work and and a full time career.  I served both active duty and reserve in the military.  I was medically retired after 17 years because of the injury.  I organized complicated trainings and retreats.  I ran marathons.  I traveled alone and in groups.  I was part of the Criticsl Incident Response Team to the 2009 shootings at Ft. Hood.  In short, I managed stress, frustration, and change well.  

This is life after injury.  It is a direct quote from my Face Book status.  

“I am totally losing it. 

This is brain injury:

I had to go to my neurologist today in Kennewick.  Normally, a friend drives me to and from.  Today, she could get me to the appointment but not back.  She had another requirement she needed to attend.

So, I’m alone in Kennewick, waiting for the Grapeline shuttle to get me home. I don’t know kennewick.  I had looked up the bus routes to get me to the transit center to get the shuttle.  It’s one transfer.. But it gets me there 5 minutes before the bus and I have to figure out the right transfer at the first transfer point.  And deal with all the sensory stimulation.  I opted to call a cab for a pick up.  I could barely manage to communicate when I needed the ride, where Imwas, and where I was going.  The dispatcher had to tale me through it, several times. I promptly forgot what time the cab is picking me up and had to call her again.

It’s lunch time.  My friend suggested a Mexican place.  I went in… A few people.  But no sign telling me if I had to sit, wait to be seated, or order at the front.  I got so anxious, I left and went to a small bagel place down the street.  It’s quiet.  And the counter person is really nice.

I’ve taken lorazepam because I’m coming totally unhooked. 

Tell you what, if I didn’t have Riley, I’d be curled in the fetal position in an ER telling them I can’t get home.  Probably get a psych eval.  

And I still have to tolerate the hour shuttle ride home and still get to where it leaves.  

I function much better in familiar settings or with someone else.  Typical of some forms of brain damage.

There’s no one here and I’m scared out of my wits.”

The cab got me to the Grape Line and I made it home safely.  But, I just can’t function outside of routine and familiarity.  This should not have been hard.