Answers
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 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 a 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, the discovery that reading was about to become one of the most difficult things to regain after the head 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? My determined personality decided to keep at it. I tried to force my brain to put everything together. I practiced, and practiced, and practiced. However very soon I realized that the brain was in charge. The more I pushed the behinder I got. Still today there are days when I do not read. It is a choice not to read because I know that if I force the issue the brain will always win. So I have come to terms with my boundaries and carry on.
Why won't any physician answer my questions?
It is my belief that most physicians dealing with head injuries do not know the answers because they do not have a brain injury. Only people who have had a brain injury can answer those questions. I believe they do the best they can and that is the reason for this website. Hopefully I will gather enough information from people writing on my forums so I can present information to physicians so they can better serve their patients.
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. This is the one area that I think I have found the answer. I have come to the conclusion it is not what we see it's what we hear. I believe that there are just too many sounds in a grocery store to comprehend. I found this out when my husband got his hearing aids and he said that walking into the grocery store was quite overwhelming. I have no scientific proof but maybe I will do some research and see what I find out.
Am I ever going to make it through one day without crying?
The answer to this question is the easiest of all. Remember the brain is in charge. When the brain gets overloaded and simply cannot take in anymore information it stops us in our tracks and the physical reaction is to cry. The brain injury has take away the divisions in our brain that allow us to handle many things coming at us. This might be the sound of the television, or the sound of peoples voices So the process is because part of our is damaged we don't know when we have received enough stimulation. Therefore if we don't know where that line is we will not know when the brain has had enough so our reaction is to cry. That is our only outlet and be thankful that we have it because it is the brains way of saying "I have had enough" "It is time to rest"...and that means that we are recovering. In the eleven years since my brain injury I have learned to recognize when my brain is tired and now I hardly ever get to the point where I cry. However, that has taken time and early on it seemed like I was crying all the time because nobody would tell me why it was happening so I was left to my own coping strategies.
Would I ever work again?
This was a very important question for me. I was running a business and wondered if I would be able to return to that business. It soon became apparent that I would not return to that business. It was too busy, too much to remember, and for me it was a reminder of what I had lost. But, I had always had my own income. Would this mean that I would have to depend on someone else? These were questions that nagged at me. I certainly didn't have the physical strength to work full time. And I knew that I didn't have the short term memory to learn new skills. Over the last 13 years I have been employed in various positions, tried to open up a couple of businesses, but I have not been able to acquire full time employment because of the residual results of the brain injury. However there is hope.
Who is this person in the mirror?
Very early after the brain injury I was looking in the mirror one morning and I didn't recognize myself. I still don't know if it was the way the brain was perceiving me or if that was how I really looked. I remember crying because I never really thought of myself as all that attractive and now I knew I wasn't. It was too much to handle. I remember thinking is this what other people see? The mirror became my enemy. It didn't matter how much I curled my hair, how much make up I put on I knew that my facial features had changed.
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. It was amazing when I started to skate again the pain seem to diminish. 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.
How come I don't know my family?
Being with my family was one of the most painful things that I did 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 called it emotional detachment. I didn't share this information with any of my family because I didn't know what it was. Now I don't experience this anxiety anymore because I have new memories with all these people. The past doesn't matter and I found out that I feel the same way about these people as I did before the head injury. However, right after the head injury it wasn't so easy. Be patient and be thankful for today's memories.
What are these emotional outbursts?
Well here we are addressing these emotional outbursts that happen to every brain injured person. Sometimes it was in the form of crying, sometimes it was in the form of ranting and raving and the inability to let things go. It was like the brain locked on an issue and just wouldn't let it go. I believe that these outbursts are the most difficult on the people around the brain injured people because the brain injured person is in another place entirely. This is what I know for sure the brain injured person does not mean anything that is said during these outbursts and for me I didn't even remember what I had said. However the people around me did. So the people around the brain injured people need to know how to forget what is said. Also the people around the brain injured person needs to ask the brain injured person when they are having a good day what they want the people around them to do when they are in that "outburst state" for me I told my caregiver that I needed to be held and held until the bad feelings would go away. Incidentially, if the brain injured person is showing that side to you they are in a comfortable place because most of the time the brain injured person is holding it all together so that they will not be judged by themselves and by others.
The Journey to the Outburst State
This was would happen to me prior to that place of total outburst. For me I spent a lot of time just trying to hold things together knowing full well that the outburst day was going to come. So I spent lots time keeping my emotions in check. Doing the right thing when I was out in public but eventually I knew that the outburst day would arrive and usually without much notice. It was a physically feeling of "going down in the valley". It was like walking into a wall. So now I am down in the valley and it is a physical painful place to be and it is a emotional painful place to be. I used to sleep after the outburst day and depending how long I had held it together the amount of time to recover varied. After I have recovered physically and emotionally I had to crawl out of the valley and carry on with life. And the process started all over again. Holding it together.....Outburst.....Down in the Valley.....Physical and Emotional Recovery....Repairing the Damage with the people around me.....repeat process
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 heads "yes" but their eyes told me that they
had no idea what I was saying. I learned to read people very well.
How did the computer help?
The computer was a very important part of my recovery. It was the
same everyday. 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,
start......games......solitaire....play....Now 13 years later the computer
is much more than that. I have learned that there are ways to become
employed on the internet, you can work from home, there are reading programs
that can help people learn to read again, there are computers that talk to
you so if reading is difficult you can listen to your computer instead. And
So Much more.....
How long will it take before I feel better?
There is not answer to this question that suits everybody. At first I was thankful for so much and I lived minute to minute because there were so many changes. Over time that time has gotten bigger but more important I have gotten to place of acceptance. This was very hard for me. I wanted to be how I was, lots of energy, good memory, ability to communicate however I got to the point that I knew that some things were never going to be the same and at the end I am a better person because of this head injury. I have learned to be patient with myself. I speak more truthful than I did before. I concentrate on my physical and emotional health everyday and hopefully make a difference to the people I come in contact with everyday.