Notes on brain injury recovery from a brain injury survivor. I have over 25 years experience with brain injury issues and have written two books. My writing is in short essays each focused on one single topic. It is appropriate for caregivers and family as well as people with a brain injury.
an introduction on a series of three essays on self-improvement that I have
found worked for me. I am sharing my several years of experience post-TBI in the
hopes that others may find bits and pieces that facilitate their own personal
These are things that I wish someone
had told me during my first few years post-TBI. The words “years post-TBI” are
important for a couple of reasons. The word “years” is important because it
places a realistic time frame for growth. The words post-TBI are important because
I don’t like the word recovery. The word recovery is a palliative that obscures
the true nature of a brain injury. You are not who you were so there is nothing
to recover. You are a different person after a brain injury and trying to be
who you were is like trying to be someone you’re not and that is a prescription
for depression. To thine own self be true.
Being a new person means that who
you were is gone. This is called a loss of sense of self. Overcoming this loss
is hard enough, but to enjoy the fruits of growth post-TBI you must discard
your second identity. This is your “TBI survivor” identity. The most difficult
part of this is the voluntary aspect.
You have to decide that you want to be more than just a victim of brain trauma.
Let’s be realistic, it is a very
hard thing to see past your brain injury. No one can see it and you can see
little else. This is, in my opinion, one of the primary reasons for support
groups. Being among others who can understand your loss helps to validate your
feelings and this allows you to move on and heal.
Moving beyond my brain injury and
continuing to grow and develop as a person is the passion that fills my day. I
am not ashamed of my brain injury, I am proud of how far I’ve come. I don’t
advertise my brain injury, but I don’t hide it either. When you are ready to
start your life anew I hope the following articles can help.
Sense of Self and Sense of Accomplishment
What is this “sense of self” that
everyone is talking about? Your sense of self is that knowledge of what kind of
person you are, how you feel and act, how you have developed over time, the
roles you fill and the roles you play.
Your sense of self was turned off
like a light bulb when you had your accident, when the light was turned back on
the room had changed. It had become a shambles. It takes a long time to put it
in order and it will never look the same. Who you are is a dynamic process.
This sense, the personal experiences, are the sum of events over time. Permit yourself the time to become a whole
How many times have you heard the
phrase, “if I could do it all over again…” Well, now you can.
Brain injury is an opportunity to
design yourself all over again. When you do something or behave in a way that
is unsatisfactory you can tell yourself, “that wasn’t me, I’m better than
that.” Saying it makes it so.
One thing that makes for a
positive sense of self is a sense of accomplishment. Unlike many people, I get
a real sense of accomplishment just from tying my shoes. Twelve years ago I had
to learn how to do that. It was a lot of work, I still must work at it, but I’m
getting better all the time. Now I only look back to see how far I’ve come!
Post-TBI everything is hard, so
it makes little difference what I’m trying to do, whether it’s tying my shoes
or learning another language. I hone my
will on adversity. I started small and worked my way up. The nice thing
about having no short-term memory is that it rarely occurs to me how long I’ve
been working at something. I just put it into my routine and work at it every
day until I succeed.
believe you will find that success suits you.
Sense of Memory
an oft repeated axiom “Every brain injury is different every brain injury is
the same.” This is because if two people with TBI’s start comparing notes they
will find as many symptoms the same as different. One symptom that seems
universal is loss of memory.
Even the kinds of memory lost are
different. There are different degrees of long term memory loss, some don’t remember
certain places or events, and some don’t remember people or faces. There is
also short-term memory loss, the kinds of things that you can often compensate
for by writing notes and so forth. Sometimes it is not always practical to
write a note, or possible to anticipate everything you will need to write down,
or even if you will remember to look at your notes. However, I still find my
self more likely to recall something if I have made a note than most ordinary
people who try to “wing it” with just memory alone.
But what about recovering your
ability to remember? So much of life’s enjoyment is dependent on memory. The
rich tapestry of life is etched in our memories; things such as movies, books,
jokes, good times, and lessons learned.
I believe that people can improve
their memory. The brain responds to activity just like a muscle. Most of us
accepted having to go to physical therapy after our accidents. Many see brain
injury as something different and they wait for things to just improve, or they
tell themselves that they have a TBI and their memory is just bad – end of
story. I refused to accept that. I worked on improving my memory and my memory
I have friends who were theater
students in school. I asked them how they could memorize entire plays and they
told me that it just takes practice. They also could not memorize as well when
they started, but they found it got easier with practice. Now they just know
they can do it and it is relatively easy for them.
One of the biggest oceans to cross
is confidence. If you tell yourself you won’t remember, or believe that you
won’t remember, then “voila!” you won’t remember. To overcome this you need to
build your confidence. Start small, try memorizing a short quote, maybe just a
couple words, and work your way up from there. You are not competing with
anyone. The more successes you have the stronger your confidence will become.
If you have seen the movie “Pulp
Fiction” you may remember that at several times during the movie Samuel Jackson
repeats the verse Ezekiel 25:17. Last year I decided I would memorize that and
repeat it just the way he did in the show. It took me quite a while, I had it
posted in my work area and looked at it all day long and I would listen to it
on my computer at home. Now when I repeat it people just laugh and say that I
must be over my brain injury if I can remember all that. I smile and tell them
that I can do it in spite of my brain injury.
That last point is critical. A few
years ago when I was still trying to get everyone to acknowledge my brain
injury, a comment like that would have stung, it was as if they were denying
what I went through. Now that I have made TBI a part of me instead of all of me
I find it amusing, not hurtful.
One final note. Being able to memorize
movie lines might be a neat parlor trick, but it has a much more important
benefit. As my ability to memorize things improves, my ability to remember
things improves. One quick example is I rarely forget to turn my headlights off
when I park my car the way I always used to, this alone has already saved me
money and time. I can say that I have now improved my memory to a point that it
allows me a higher quality of life. Give yourself time and keep at it. The
thing you should never give up on is perseverance.
Sense of Compassion
the greatest gifts that I have realized with my brain injury is a deep sense of
compassion. I have felt pain and loss very deeply and it has improved my
Anger is a common reaction to TBI, but once you have
accepted your injury and are ready to move on that is where real growth and
real compassion begin. This point may take months or years to reach, but once
you are there you will find that the benefits will enrich you. Getting past
that anger is beyond the scope of this article, but knowing the benefits may
give you the added strength to transcend the anger.
A compassionate person is a loving person and a
loving person is a loved person. Everyone wants to be loved. TBI gives us a
bridge to compassion.
People are not drawn to you by your needs, if
anything a needy person pushes them away. We are drawn to people by their
compassion. You must be strong for someone else before they will be strong for
you. When you are strong for someone you will find it makes you stronger,
regardless of what they do or don’t do. It is like a confidence building
So many brain-injured people are lonely and that is
unfortunate. It is doubly unfortunate because they have been given a gift that
empowers them to draw others to them. When you develop that inner calm and
strength that comes from mastering a difficult situation like TBI you will draw
others to you.
Sympathy says, “I know how you feel.”
Empathy says, “How can I help.”
Volunteering is one way to demonstrate compassion.
Any one who has heard Craig Martinson, a survivor from Minnesota, speak about
volunteering knows the rewards that such compassion has to offer.
Compassion involves you immediately with others.
Thus, you cannot act compassionately and be alone at the same time. People will
see your compassion even if it’s not directed at them and be drawn towards you.
As the Hindus say, “The breath of the compassionate is never taken alone.”
I've decided to opt out of my relationship with Oxford Publishing as we were ultimately unable to agree on a working direction for the book. At this point in time I will begin posting essays from my first book "Meditations on Brain Injury" which is now out of publication.
I will be publishing my next book soon. Its working title is "Expanded Consciousness: more meditations on brain injury."