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Will I be able to read again?

When I left the hospital and knew that there was going to be a recovery period after my brain injury and I was so happy that maybe I would be able to catch up on my reading.  I had been working so hard in my business and being a mom of an 8 year old my reading consisted of children's books. 

So now I thought this was a blessing in disguise since I was recovering anyway I would be able to go to the library and catch up on the latest books.  However, soon I discovered that reading was about to become one of the most difficult things to relearn after my brain injury.  I was so disappointed the first time I sat down to read that I cried. 

The brain was processing every word that I was reading but the brain would not put the words all together.  None of the words would connect into one complete thought.  How frustrating is that? So now what? One of the things that helped me was I would ask my 8 year old son to read to me so that my brain would learn how to connect all the words together again.  So maybe the secret to retraining the brain is to have people read to brain injured people. 

During this time I was willing to try anything to retrain the brain so I could read.  When this skill is taken away from people it adds to the isolation that many brain injured people experience.  I have learned that my determination and my courage to force the brain the work again both worked for me and against me during my recovery. 

It seemed in the beginning that the “harder I pushed  the behinder I got” but now I know that “forcing the brain” to process information is a good thing however, I didn’t need to “force the brain” 24 hours a day – 7 days a week but I was so anxious to recover that I didn’t know that I needed to “rest the brain” sometimes and I soon learned in my recovery if I didn’t rest the brain the damaged part of the brain “forced” me to rest.

This may be the most frustrating part of recovery for many brain injured people because they have lost the ability to “know” when the “brain has had enough” and then we all seem to go to that “dark and lonely” place that “no words can explain” and “hurts the people we care about the most”.   

Why won't any physician answer my questions?

It is my belief that most physicians dealing with brain injuries do not know the answers because they do not have a brain injury.  Only people who have a brain injury can answer those questions.  I believe that science is now catching up with brain injuries and there is some exciting research into brain function and help for people with brain injuries.

Why are people asking me so many questions?

No matter how many times I have asked people not to ask me so many questions they just don't get it.  The reason they don't get it is because "they don't wait for my brain to process the question and wait for my brain to find the answer?  People are too impatient they do not realize that my brain does not process information as fast as it use too.  That blank look I get on my face isn't because I didn't hear it is because I am still processing the question.  So what do people do "They ask another question"   So now I have to process two questions and find the answer to two questions.  By that time my brain is too tired and the response is usually a very angry response.  So if you are dealing with a person with a brain injury "Ask the Question" but "Wait for the Answer"

How come going to the grocery store is so hard?

What is it about the grocery store that affects the brain injured person?  Walking in to a grocery store can stop you in your tracks and you want to walk right back out again. There are many aspects about the grocery store that leads to confusion and frustration for the brain injured person.  For me personally I believe that it was a combination of sounds and smells.  Once I realized that the “senses” seemed to be in “a competition” I learned compensate by “toning” down my senses and things got a little easier.  The only thing I know for sure is that grocery stores cause some problems and by exercising some “toning down exercises” it has made shopping a little easier.  Does it always work? No, but I just keep trying to find an easier way to make day to day tasks easier and keep on trying until it becomes a habit.  

What is this place where it seems that the brain has had enough?

After a brain injury the damaged part of the brain seems to be in charge.  When the brain gets overloaded and simply cannot take in anymore information it stops many brain injured people in their tracks and most times the physical reaction is to cry or a strong emotional reaction that comes on so fast that the brain injured person has no time to react to what is going on in the brain.   After the brain injury that it seems that “there is one big brain” and all the divisions in the brain that have been established through a lifetime have disappeared.  When information comes into the brain it takes the damaged brain a very long time to process the information because the brain has changed the way it processes information.  The brain injured person doesn’t seem to know when the brain has had enough and that’s what makes it so difficult.

Would I ever work again?

For many brain injured people becoming employed after the brain injury is a question that can only be answered with time.  Brain injured people have not lost their employable skills however many brain injured people struggle with processing information, short term memory and day to day fatigue so it seems that the ability find gainful employment and contribute leaves many brain injured people wondering if they will be able to provide an income for themselves after the brain injury.

Who is this person in the mirror?

Before the brain injury I was never too concerned with personal image, I was very confident that “beauty” was on the inside” and “I lived my life accordingly”. After the brain injury I was looking in the mirror one morning and I didn't recognize myself.  I never really knew if my image was “my brains perception of me” or “if that was how I really looked.  I remember thinking is “this what other people see?” Now I know that because my brain injury was in the form of a stroke that my facial muscles had changed because of nerve damage.  It seemed that I saw something in the mirror that was magnified because of the brain injury and that I was the only one who noticed.

What is this pain I have?

No matter how many physicians I went to and there were many nobody would address the pain that I had in the bottom of my feet.  From my point of view it felt like the nerve endings were just pulsating all the time.  Even today there are sometimes that I experience pain in my feet but thankfully that I have recovered to the point that it is not there all the time. Since my brain injury in 1997 science has proven that there is pain associated with brain injury.

How come I don't know my family?

Family gatherings became one of the most painful things that I experienced after the brain injury.  I knew exactly who all these people were, their names, who they were married too, who their kids were but the terrifying part is that I didn't seem to have any emotional contact with these people.  I did not know how these people connected with me emotionally.  I call this feeling “emotional detachment” because that is what it is. It feels that “I am on the outside of a glass dome” and “everyone else is inside the glass dome” and that “space in between” is where the “emotional connection is” but the damaged part of the brain will not let me “break through the dome” so it leaves the brain injured person “wondering who they are” and “where they fit”.  I know for sure during recovery that “in time” as the brain recovers that “breaking” through the dome becomes easier however the key is really to make “new memories” with the people you care about because “the past really doesn’t define who we are as people” only the “present” matters. This was not an easy process for me but with determination and “being open” to change the “emotional detachment” doesn’t play as an important role it did early in my recovery.  

What are these emotional outbursts?

Early in my recovery I realized that “my emotions” were all over the map. It seemed like I was living on the edge and simple things would “turn me into another person” a person who was now bothered by “the sounds of peoples voices” or “walking into a grocery store” or “trying to find my car in the parking lot”  Who was this person? How could I have such a “strong emotional reaction” over such simple daily activities?   With time I realized that it was simply a place where “the damaged brain has had enough”.  I learned that when the damaged part of the brain has had enough it simply will not process any more information and needs to react.  Many brain injured people and the people who care for them “struggle” with this part of recovery because it happens so “suddenly” and “powerfully” that there isn’t time to stop it.   With time the brain injured person learns “when the brain has had enough” and some people who care for brain injured people “knows when the brain has had enough” and then recovery takes a new turn. 

Where the Brain Has Had Enough?

  • The brain injured person knows that eventually the brain will have enough and when it does there will be a strong reaction.
  • The brain injured person knows they are going to hurt the people who work with them, live with them and care for them but it happens so quickly and strongly that the reaction is automatic.
  • The brain injured person knows that the place they are going when “the brain has had enough” is a dark and lonely place and there could be physical pain involved as well.
  • The brain injured person knows that the strong reactions will happen again until they can recognize what is causing the reaction and can verbalize to their caregivers what they need during that time.
  • The brain injured person can start to focus on their reactions to certain situations and it can become the focus of their relationships with people.
  • The brain injured person can spend a lot of time feeling guilty about disrupting the lives of the people around them.

It is important thing to realize that “these strong reactions” that the brain injured person has are only a “reactions”.  These reactions have nothing to do with them as people.  Sometimes during recovery the reactions become the focus of recovery instead of focusing on the person as a whole.   

How come when I get tired I don't talk right?

One of the areas of struggle for me was when I was really tired my speech was affected.  It was so frustrating that my brain was saying the right thing but the speech that was coming out of my mouth was different.  The most painful part was that when I asked people if I was saying things right they would shake their brains "yes" but their eyes told me that they had no idea what I was saying. 

How did the computer help?

Technology and the computer were a very important part of my recovery. The information on computers can provide a stable environment for the brain injured person.  Early in my recovery when I clicked on "Solitaire" it looked the same every day.  I used the computer at first to re-train my brain to learn processes again.  Example,  There are brain training sites, reading programs that help people read again and you can even listen to websites if reading is difficult. Electronic devices like Blackberries have made scheduling appointments and reminders for appointments better for people with brain injuries.   But, technology and computers are more than a training tool there are ways to become employed on the internet, you can work from home because when you are on the computer “nobody knows you have a brain injury unless you tell them” so it evens the playing field when it comes to employment.  And So Much more.....

Why can I do tasks one day and not the next?

One of the most frustrating things that can happen to a brain injured person is being able to do a task one day and not the next. Having reached a certain place in recovery and being able to look back at the recovery path it becomes apparent that when the brain is trying to learn a new skill and create new pathways in the brain it becomes tired and so when the new pathways are being developed it seems that recovery might be going backwards when what is actually happening is that the brain is resting from trying to learn a new skill.  So if you are finding that some tasks are harder to do on some days just take a minute and relax and celebrate what you can do today and the people who care for the brain injured encourage your brain injured person to celebrate the small improvements because recovery never stops.

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5 Answers to New Brain Living – The First Step to Learning to Live With Your New Brain

5 Answers to New Brain Living: Answers for Creating a Personal Recovery Path After a Brain Injury

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