What It’s Like

I wish I could send this post and article to my HR and coworkers.  

I fought as hard as I could in the years following the injury. I’m stuck. What I have now is what I have although I might improve slightly.

It was never easy. Even when I was doing hard things, they were an attempt to rehab.  
There are days I feel more energetic and can do more. I notice there is a pattern. If I do more one day, I’ll be more fatigued the next.  
That’s one of the major issues at work. Every day it’s a fight against overstimulation and fatigue. Every day is harder. I slept 12-13 hours a day so I could work part time. And I was always exhausted, stressed, and anxious. I never was “who I was before.” Most days, I hid it fairly well. My office is a cave. You’re right. I needed quiet, dim, non stimulating environment. Remember all the tears? And me walking away from meetings? Or getting so frustrated in meetings because I couldn’t keep up or express myself? Think it was easy to work? I couldn’t process the information. It was too much, too fast. Sometimes, I just zoned out. I needed to survive, I wasn’t trying to be rude or unprofessional.   

Too many coworkers either didn’t notice or excused it. I know some people were trying to help and didn’t know exactly what I needed. I didn’t know either. And if I’m emotionally, mentally, or physically flooded or exhausted, I won’t be able to tell you. I’ll walk away or break down. If I get there, take me somewhere quiet. And know if I’m emotionally melting down, “processing” won’t work. It’s more emotional stimulation. Just sit with me quietly or leave me alone. I figured that out with the help of my cognitive therapist. I won’t be able to ask at that point. You have to recognize it and help.

When I worked part time, I slept 12-13 hours a day. Think about it. What was my life? I never had the energy to cook. I lived off oatmeal, maltomeal, cereal, delivery, sandwiches, salads, or whatever microwaveable meals I had. I never had the brain energy to cook, either. It was too hard to manage anything involving multiple steps. I barely kept my house clean enough to be sanitary. My day: work, sleep, warm up dinner, take care of animals- let ferrets play, sleep. Repeat. Some days, I made myself get some exercise. Short runs, that people critize me taking. After all, if I can do that, I can work. It can’t be that bad. Running was sanity. Weekends, I slept and usually shopped and tried to do chores. Usually I got back enough energy to at least show up to work the following week.
Now add in seizures and migraines. And no longer being able to drive. Still think it’s easy? Still think I’m faking?  
Walk a week in my shoes.  Or even a day.  Deal with the sensory stimulation of normal life being like living in a rock concert 24/7.  Earplugs, sunglasses, hats can only do so much. Know why I cringe at a sudden noise or loud voice?  It physically hurts!  It confuses me!    

Since I’ve been off work, my diet has improved. Im still as disorganized as ever but my house is cleaner. I sleep only 10 hours a day. Maybe 11 if I was really busy. I can actually do the cognitive improvement exercises every day when before I might have managed them 2 days a week. Things are better.
I love working with veterans.  I wish I could do my job like before.  Or at least in some meaningful way that contributes.  I tried.  


Brain Injury Need to Know

Simple Gifts

The Shaker hymn, “Simple Gifts” (Joseph Brackett) is deceptively simple.  The melody and harmony lines are uncomplicated.  The verses are sweet but speak to deeper meanings.  The original and additional verses speak to my life over various times, especially post accident. 

The original version was written as a dancing song.  

‘Tis the gift to be simple, Tis the gift to be free.  ‘Tis the gift to come down where we ought to be.  And when we find ourselves in thr place just right,               ‘Twill be in the valley of love and delight.

When true simplicity is gained, to bow and to bend we shan’t be ashamed. To turn, turn, will be out delight. Until by turning, turning we come ’round right. 

After the accident, I gained confusion and fear not simplicity.  Life was complicated and I lost all sense of peace and freedom.  I was locked in a mind and body that just didn’t work right anymore.  In a job that didn’t fit and fighting to try to gain my life back.  I fought to hard to be the place I was before.  I missed the place “I ought to be.”  My life changed.  I needed to change with it.  As I find the simple gift of being free of trying to be who I am no longer, the gift to let go of fear, to be, I gain a larger gift of peace, love, and delight.  Such as the full moon, the stars, the winds, friends, family, running…just being who I am.  There is no shame in who I am now.  To lose much of my mental intelligence was humbling.  Being intelligent and talented was important before. I have to accept the changes and realize with humility, I am different, with different things I can do.  I have  To keep turning away from negativity and fear until I come ’round right.  Humility is something often seen as weakness.  It is truly seeing who you are, strengths and weaknesses and loving yourself anyway.  And being willing to change and grow.

We all have the moments of needing to be humble and turn our lives in a different direction.  Sometimes, it takes a thump on the head to get our attention.  I hope  you listen better than I did.

Simple Gifts on You Tube

One alternate version speaks of love and relationships.

‘Tis the gift to be loved and that love to return.  ‘Tis the gift to be taught and a richer gift to learn. And when we expect from others what we try to live each day, then we’ll all live together and all learn to say:

‘Tis the gift to have friends and true friend to be. ‘Tis the gift to think of others and not only think of “me.” And when we hear from others what they really think and really feel, then we’ll all live together with a love that is real.

Things we should have learned in grade school that would make the world and our lives much better: Learn, teach, listen, respect, honesty, putting others in front of yourself.  Friendship is a balance between give and receive.  Friends love and support each other.  One does not take more that you give back.  Balance.  Community and relationships are work.  We have to hear from others bravely, and they must speak truely and with respect.  Then, you can build on the foundation.

  Simplicity is hard, as challenging in some ways as our daily complicated, “meaningful” lives.

Love is found in simplicity.  There are two additional verses I’ll talk about later.


TBI and Cogintive Function

In May, I underwent a battery of tests in regards to the impact the TBI has on my brain.  The testing included an EEG, a contrast MRI, and neuropsychological testing.  I received a mix of good and bad news.  

The good news is that my EEG showed no seizure activity.  The epilepsy specialist did not recommend changes to my current treatment.  It appears that my seizures are controlled.  I might get my driving privileges reinstated in 4 more months.

The MRI (with contrast) showed changes in my brain indicative of brain injury.  Thanks, I knew that before.  On the other hand, I’m happy something finally showed up on my physical testing.  It was extremely frustrating to know things weren’t right but have no medical confirmation on testing.

The neuropsychological testing was brutal.  It consisted of 6 hours of testing over 2 days.  It was totally mentally exausting and aggravating.  It was designed to push me and it did.  The testing looked at overall intellectual functioning such as language usage and comprehension, memory, visual spatial function, problem solving, math, and reading.

  I did well on basic knowledge and vocabulary.  However, on the rest of the testing, I scored between the third and tenth grade level.  I have a Masters in Social Work.  This is a significant drop in function.  My IQ is now low average , close to below average.   It used to be much higher.  This result wasn’t unexpected but it was hard to hear.  I still haven’t really accepted it at all.

I also showed low levels of frustration and stress tolerance. I have no idea where that came from.  I only told the examiner to F off once.  And broke a pencil.  And was 15 minutes late coming back from lunch because I had no intention of continuting.  My sister managed to get me to return.  

It was noted that I cognitively fatigue and perform much worse in the afternoon.  I also have focus and attention problems.  And, gee, I have issues with depression and anxiety.  Go figure.

The overall recommendation was that I do not return to work at the VA in any capacity.  This is both good and bad for me.  I enjoy working with veterans and being a social worker. I want to return to work. On the other hand, work is extremely frustrating and I am unable to perform much of my job responsibilities.  It’s both sad and a relief.  My prognosis is that there will be no significant improvement at this point.

On the positive side, the information provides my cognitive therapist with target areas for treatment.  She thinks I can have a limited amount of improvement, enough for me to do some volunteer work in the future.  She also thinks it may be worthwhile to do vocational rehabition after I’ve done more cognitive therapy.  

The outcome of Traumatic Brain injury varies greatly between patients.    Some brain injury victims end up in vegetative states or have extreme difficulties in mobility and even basic functioning.  My outcome is much more hopeful.  There may be more optional for me in the future.

Be well, friends.  Take nothing for granted in your lives.  It can change in a second.


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.


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.