Emotional Instability

The first day back to school was already difficult as it was a new building and I was afraid how people would treat me. The thought of relearning how to use a locker combination, learning my class schedule and knowing what class I should be in was stressful. It was so overwhelming for me that I remember being in school and in tears my first day. However, the hardest part was finding out who my real friends were. I was lucky that I remembered one of my friends prior to my brain surgery and her name was Alexis. I was also fortunate to have a very understanding learning support teacher and other staff members who looked out for me.

My first day at school I went to Alexis’s lunch table she was sitting at to see if I could eat lunch with her. I remember her rejecting me and telling me that she did not think there was enough room for me to sit there so I ended up looking for another table to sit at. Did she feel uncomfortable with me because she knew I had brain surgery or epilepsy or was it the other people at the table who felt uncomfortable? Did the other people at her table not like me?  I eventually ended up finding another table to sit at and in the long run Alexis ended up at the lunch table I was at.

As Eighth grade started out rough by not only finding out who my real friends were, but dealing with unsupportive teachers. In eighth grade I had a new Learning Support teacher. Even though she might of known me from 6^th and 7^th grade, she never had to deal with me till then.

 In October of 1998 it was the first IEP (Individual Education Plan) meeting since my brain surgery. My parents wanted to let the teachers know what the surgery had done for me and what I would need to continue to work on to be successful.  However, during this meeting my new learning support teacher did not like the fact that I did not have any recollection of the summer reading assignment that I had read prior to brain surgery. My parents had explained that prior to surgery I had read the book, but because of having a cluster of seizures and having parts of my brain removed I had no memory of even reading the book. Instead of putting the summer reading to rest the learning support teacher continued to argue that I should have to reread it. In the mean time I was already trying to catch up on work I had missed for being out of school for 2 weeks already.  She then said I should at least write a paragraph about a part in the book or draw a picture. Luckily, my 7^th grade learning support teacher was at this meeting to support my parents and win that battle.

Throughout the year the learning support teacher continued to be unsupportive by not sharing my IEP with my classroom teachers and expecting me to know things when I would simply ask for help. She continued to build a feeling of animosity towards me as well as her friend who was a math teacher. They would tell me that I would not allowed to use any adaptations for a test when it was written specifically in my IEP and would tell me that I was not permitted to be in the classroom when using those accommodations and I was told I had to go to the learning support room. This would continue all through eighth grade.

As I continued to be seizure free I became aware of what teasing felt like. People would say in front of me to their friends “I wish Katrin had a seizure” and laugh. I would learn from my parents that being teased was nothing new. They explained to me that when I was having seizures in the seventh grade my mom told me that depending on the type of seizure I had it caused a major issue that they had to bring it to the principals’ attention. However, it did not stop others from making fun of me.

Being teased really bothered me that I would get upset, which made school very difficult. Not only did I have people surrounding me that made fun of me, but I had a lot on my mind about my past, present and future. At this point I was looking forward to going to high school and starting all over again. This would give me the opportunity to meet new friends and let them meet the person I was now, not the person I was with epilepsy.

When I entered high school it gave me a chance to show people who I was now and to make new friends. This time there were even more students in my grade and half of them would not know of my past history with epilepsy. Nevertheless, I was quiet and afraid to approach people and start a conversation with them. I felt comfortable going to the people who I already knew were my friends and the friends they made, I would talk too.

The beginning of high school did not start out to bad. I enjoyed the change from middle school to high school. However, as it got more into the school year learning new information and doing the homework became more difficult. Not only was learning new material a struggle, but also trying to fit in with my peers had become even more difficult. Most of my peers had there own clichés that they would hang out with and I was not part of one. Also, as they would do school activities after school all I cared about was getting home after a long day in school.

As I would sit in classes 7 hours a day, it made for a long day. All I could think about was what took place in the past when I was having seizures. How was I able to recall all the things I learned if I did not remember learning them? How did I interact with others or how did others interact/treat me? Was I talkative or quiet? The most difficult part was not knowing my sister. All I could think was what was it like when Kirsten was around. At this time I was not only grieving over my past that I did not remember, but the loss of my sister as well.  The long days at school did not make life easy.

Not only did coming to high school mean that I would meet new friends, but I would also meet a whole new group of teachers. As these teachers first met me they would look at me like I was any other student with a learning disability, but in reality it was more then just a learning disability.  Since they did not know me prior to my brain surgery they did not understand my learning difficulties and why learning new material was a struggle for me. Having the teachers understand my background would become a challenge, as they had never dealt with someone who had had brain surgery or an acquired brain injury (ABI). An acquired brain injury is defined as an injury to the brain, which is not hereditary, congenital, degenerative, or induced by birth trauma. An acquired brain injury is an injury to the brain that has occurred after birth. In my case I suffered an ABI from having brain surgery.

Going to school everyday made life hard. I started feeling depressed about life as for most days when I was in school I would be in tears. At this time I was trying to process the loss of my sister. This really had a big affect on me, as I could not recall much of our like together.

My parents had started noticing a difference in me that they talked to my current neurologist about the changes they had seen in me since my brain surgery.  Because I had been doing well with no seizures instead of driving all the way to Hershey Medical Center we would go to a neurologist near by. After further discussion they decided to put me on an anti-depressant to see if it would help. After being on one medication for some time they had not seen a difference in my mood so they thought that seeing a psychologist might help. However, after several attempts of seeing the psychologist my parents did not see any progress being made, as it did not seem like he understood how the brain surgery had an impact on my mood so I stopped seeing him. Nonetheless, my parents and the neurologist would continue to try different medications until they found something that would work.

At this time as I was heading into 10^th grade, the learning support teachers and general education teachers continued to not understand why I was so emotional at times and would need a break from class just to talk to someone. Not only did they not understand my emotional needs, but they still did not understand my needs for learning.  Although I looked like a normal student, inside I was different. Towards the end of 10^th grade my parents saw that my depression was continuing to worsen so I started seeing a psychologist again, but this time my parents found someone that specialized in working with patients with brain injuries.

As I was getting closer to turning 16 I was looking forward to getting my driver’s license because it would finally make me feel like a normal teenager, but because of having brain surgery I had to have a peripheral vision test done to see if it would pass the PA State law requirements. We had known that my brain surgery had given me a greater peripheral vision cut, but at 13 years old, neither my parents nor I thought about how it would affect me later in life.

According to the PA State Law your horizontal visual field must be at least 120 degrees (combined) in the horizontal meridian, excepting the normal blind spots. As I had the test done it showed that my peripheral vision was less then 5 degrees of a normal visual field to the right side, although I had 20/20 vision. If there was a binocular vision test (vision with both eyes), I might pass the test. However there is no equipment that allows binocular vision testing. As a person may be adequately sighted in one eye and still meet the requirements, the license would be restricted to vehicles with outside mirrors that provide a view of the highway for a distance of 200 feet to the rear.

As I was excited about getting my driver’s permit, in the end I did not meet the PA state law requirements. This did not make life easier for me. If anything it made matters worse. Not only was I dealing with the loss of my sister, my past, and be known as the girl that had seizures, but now I would never be able drive.

At this point I had so much to deal with that it almost became unbearable and I resorted to cutting. I hated my life so much that I thought about suicide. Why would it be worth living if I continued to get bad news?  I could not be like most teenagers who get their driver’s license and be independent, I couldn’t remember my childhood or Kirsten and fitting in was not easy, so why suffer. This would be an ongoing process as I had lots of problems that I was dealing with.

Mean while at school, teachers thought I was being over dramatic. When I would approach a teacher/guidance counselor to talk about an issue they would say to me “let it go.” So in order for them to understand me better my parents had my psychologist explain to the teachers how my brain surgery had an impact on me.  As the psychologist and my parents explained to my teachers that when the frontal lobe is removed there is no longer a mood regulator and when you remove a part of the parietal area you have what is called persistence of thought.  Nonetheless, this did not seem to help the teachers better understand me. It was almost like my disability was invisible. Nothing looked wrong with me from the outside, but on the inside is what they could not see.