Resources & Inspiration for Life with Brain Injury

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Happy “New Year”

by Linda W. Arms, dated Jan. 15, 2014

Today is the 8 year anniversary of my brain injury.    I know many of you have the date of your event noted as a “special day”.    I understand that many military veterans injured in our recent wars, refer to it as “Alive Day”.    From some of you, I’ve heard it referred to as your re-birthday, or new birthday.   Some of you mourn and wear black.   Recently, Gabriella Giffords, shot in the head a few years ago and who lives with brain injury, went sky diving on the anniversary of her injury to celebrate life.   Her Facebook message on that day sounds familiar to so many of us with a brain injury, whatever its cause.    She wrote:  “I’ve overcome a lot.   Progress has come from working hard.   Today, I grieve, I remember, and I take another step.”

And that is where I am at today.   Ironically and without having planned this, I am staying a few days with my husband in the small Colorado ski town I was visiting at the time of my accident.    I have avoided this area for the last 8 years and have slowly made peace with returning.   We decided yesterday, at the spur of the moment to come up here, forgetting about my anniversary.   I was a little spooked once I remembered I would be up here in this same place on my “special” day but I decided I had to face it.    In fact, this morning, I returned to the mountain and just looked up the hill where “The Accident” occurred.    The morning was very much the same.    There was that fresh layer of snow that had that special, beautiful sparkle caused by the morning sun reflecting off the individual snowflakes.    I remembered that often after the accident and now I saw it again on the same day, around the same time.   I wanted to cry, I felt sad and still do but I will not dwell on this.    I have chosen to move forward and make the best of things as I’ve done for the last 8 years.    It is the best thing to do.    It is what it is and cannot be undone…  

“A bridge of silver wings stretches from the dead ashes of an unforgiving nightmare to the jeweled vision of a life started anew.”  –Aberjhani, The River of Winged Dreams

“Getting over a painful experience is much like crossing the monkey bars.   You have to let go at some point in order to move forward.”  –C.S. Lewis

“We acquire the strengths of that which we have overcome.”  –Ralph Waldo Emerson

I particularly like something that Lt. Brad Snyder had to say in an NBC news article a couple of years ago.   He said, “Choice – that word means a lot here.   Choice puts everything on a level playing field.   Each of us faces a plethora of daily choices – when to get up, what to eat for breakfast, what to say to your family before leaving for work.   You can choose to be positive.   Or you can choose to be a victim.   You can choose to move forward with grace.   Or you can choose to succumb to negativity.”

So as you begin your new year of 2014 and whenever the anniversary of your brain injury event arrives, remember that we have to move onward and be the best we can be.   It is often difficult.    We will have setbacks.   But as we all look back to where we came from since our injury, most of us can see that we are better.    The journey we’ve had has made us stronger in many ways.   I know when I look back and all I’ve been through, I realize how strong I’ve been.   I don’t want to forget that.    I want to remind myself about how far I’ve come.    Recognizing this strength helps me as I face new challenges in life.  

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths.   These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern.   Beautiful people do no just happen.”  — Elisabeth Kuebler-Ross

Happy “New Year” and now I will go out to enjoy the beautiful Colorado mountains by walking (or maybe snowshoeing) through the woods, enjoying life and continuing my journey to get even better.

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Don’t Talk About “Killing Time”

by Linda W. Arms

Since my brain injury I have become rather sensitive to healthy people complaining about being bored, not knowing what to do and are just “killing time”.      There are so many of us who have had an illness or injury where our options of doing anything are severely limited.   We struggle to get better.   We struggle to do the things we did before.   We struggle to do things like other people.     We are happy when we can do a simple thing without too many problems, even stirring a bowl of instant mashed potatoes!        There are people living with SEVERE handicaps and illnesses who appreciate the moments they are given and find joy in little things.    Killing time cannot be in your vocabulary whether you are healthy or struggling with an illness or injury.

I am fortunate in that my brain injury was not as devastating as those of some other people I have met.   It has also been over 7 years since my accident during which I worked hard to get better.  I tried doing things I did before and continued to do many of them even though it was very difficult.   I keep looking for new goals to increase my level of improvement.    I want to live life.   I want colorful, rich experiences.   In my journey back from the despairing first years after my injury, I feel I have reached the mainland of living where I can participate more fully.   I don’t want to kill time and I absolutely hate it when I hear other people who say that.   How sad!   Just think of the poor victims of the recent bombing in Boston or the shooting at the Aurora movie theater.   They lost their lives.   Their time is “killed”.    I’m sure they would like to have had the opportunity to trade places with some of the living that are “just killing time”.

A couple of summers ago I participated in a week-long camp for people with brain injuries.   I was a volunteer acting as a buddy to a camper who had a much worse brain injury than I did.   My buddy was injured decades ago at around the age of 19.   He was in a serious car accident that occurred because something in the car malfunctioned.   He was in a coma for several months.   Today he lives with a caretaker but he participates in life by going to camps and has other activities to stimulate him.   He has terrible memory problems and many other cognitive problems.   BUT HE LIVES LIFE with a smile.    He is not bored.   He does everything he can do with the cognitive capacity that he has.

Another camper I met who was truly an inspiration was another young man who received his brain injury when he was a toddler.   He was in a coma for 2 years.   Thirty-some years later, he is in a wheel chair, he cannot speak, his motor skills are very, very poor.   He has to be fed or food cut up for him.  He is always dependent on someone for everything.   When I first heard about him coming to the camp and then actually met him, I thought, oh my God!   How do you interact with someone who is so severely handicapped.   I felt so bad for him.   But you know what; he had so much joy in his beautiful eyes and in his face when he participated in all the camp activities.   He and I connected in the last couple days of the camp and I thought he was truly an inspiration to living a full life given whatever limitation life has given you.

So my point is – no matter where you are at with your brain injury – keep going.   Live life, enjoy life, try new things and don’t just sit around “killing time”.   Be happy you’re alive.   Be happy you have options in living a fulfilling life and finding joy even if you have limitations.

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Frightened by My Own Shadow – A Reminder from My Injured Brain

by Linda W. Arms

One evening recently I was walking through my house and was frightened by my own shadow.    It was a big reminder of my earlier years after my brain injury when I was often frightened by things.    Often I think I could not process things quickly enough to understand what it was I was seeing.    Part of it also was that I was often hyper-vigilant as a result of PTSD (post-traumatic stress syndrome).    Whatever the cause, these responses of fear are a bit unnerving and zap some energy from my brain.   It even affects my physical energy for a few moments; there is a wave of physical weakness.

In the last weeks I’ve had many things on my mind and I am less aware of my surroundings.   A few days ago, I walked around the back of my house and saw the reflection from the water in a tiny pond that’s been there for the last 20 years.   When I first saw the reflection I was frightened because I didn’t know what it was.   It didn’t fit in with the rest of what I saw like grass, trees, and plants.   I don’t think it was a PTSD thing this time.    I think my brain could not process the visual input fast enough to tell me “it’s OK, it’s just light reflecting on the water”.

How many of you have had these experiences after your brain injury?   I remember some of my rather strange reactions that now I can even laugh about.    A couple of years after my accident, I moved my car out of the garage and parked it in the driveway.   I wanted to sweep the garage.    After sweeping for a few minutes, I looked up and saw a car in the driveway.   It frightened me because I thought “who is parking there, what do they want?”    A few moments later I realized it was my car that I had moved out there less than 10 minutes ago.

Another time I was walking through a home goods store and I suddenly saw something that really scared me and I even made some sound.   Again, a few moments later, I recognized that it was steam coming from a room humidifier that was on display.    It sounds crazy and I felt embarrassed by my reaction since there were other people around.    The incident caused me to have more difficulties getting through the store.   The scare zapped that fragile brain energy.

I’m not sure what causes these responses; only the brain fairy knows for sure.    I think in the earlier years, PTSD played a role in my moments of being frightened by something.    Today I think it’s mostly that my brain still can’t attend to too many things at once.      If my brain is busy thinking about a problem then it can’t also be processing a lot of visual input or other things it should be doing.   I have to say I’m rather disappointed that I have had this response so frequently in the last weeks but I realize it will get better.    It makes me realize I have to be extra careful doing things that require a lot of attention.   I have to remind myself to stop thinking about the problems, put them aside, and focus on what I have to do at the moment.

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The Brain Fairy is Always Lurking

by Linda W. Arms

After a brain injury, every day brings constant reminders that our brain is not working well.    For many of us, everything becomes a challenge.    Every movement we make, speaking, seeing, reading, counting, driving, cooking, cleaning, walking, hearing, thinking and so much more becomes difficult.    Nothing  feels normal.   With these challenges, we become even more fatigued and less able to do the things we are trying to do.   It becomes a vicious cycle that we cannot move out of.    Slowly as we get better, we start experiencing a “new normal”.

I think our “new normal” is a combination of us forgetting how it used to be, and that we have actually gotten better.     We also adapt by changing things around us and how we do things.   We stop doing certain things because it just isn’t possible or isn’t that important for us to spend the energy on.    We become much more functional and after a while we don’t think about our brain injury every single day.     Sometimes it takes years to get to this point.

Many of us don’t want our brain injury to define us so it is important not to constantly think of ourselves as “damaged” or that we can’t do something.    Sometimes we have to redefine who we are and what our life is to be.   Maybe we can’t do that job we had before.    Maybe we can’t climb mountains.   But there are other new and different things we can do.

Living with our “new normal” is fine and works most of the time.    Sometimes, however, the brain fairy comes back for a visit.   The brain fairy that causes all that trouble but also heals things in our heads is always lurking in the background.    Sometimes that visit brings back many symptoms we thought we’ve overcome.      A frightening experience like two large dogs barking, running and jumping at you causes you to have that sense of visual discombobulation or you feel unbalanced; your mind goes blank and the fog returns or something else just isn’t feeling normal again.

Sometimes, the brain fairy returns for a longer visit such as when you are faced with big life disturbances such as family problems, money problems, illness or other things that weigh heavily on you.    The stress, the emotions, and the mental work required to deal with these things is more than your injured brain can deal with.   Symptoms return, fatigue sets in, everything becomes much more difficult.   It is a time to step back and take care of yourself.    It is time to ask for help.    Remember the early months or years after your brain injury when you did nothing much other than try to heal.   You rested more, people helped you more, you did less, you put less things on your “to do” list, you didn’t do some things you used to do.

For whatever reason the brain fairy returns to you, remember it will pass.   Sometimes it is a short visit.   Sometimes you don’t know when it will end.   But remember that eventually it will get better again.   Pace yourself.    Be patient and good to yourself in the meantime.

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