Megan

Over the course of the first seventeen and a half years of my life I was never normal, but no doctor or psychologist could quite figure out exactly what was wrong with me until a life-changing surgery that I will never forget. At the age of four I began having laughing seizures and after an MRI my parents and I were told that there was "something" in my brain in or near the hypothalamus- the part of the brain that governs mood, cognition, and body temperature as well as many other vital things that affect a person's ability to function normally- but it was in too delicate of a place to biopsy so the doctors decided to "watch" it and see if it grew or changed over the years. We were all thankful that it was benign and it didn't seem to be affecting me very much so doctors began treating the seizures and the spot in my brain was monitored through a yearly MRI or EEG. Little did we know that this tumor was affecting and would continue to affect every physical, mental, and emotional aspect of my life.

Growing up I always felt there was something that set me apart from my peers, but I was told that many people often feel that way so I figured that my inability to comprehend basic mathematics and socialize well with others was just part of being me. I understood that everyone was unique and different and that the way I was feeling was "just part of growing up". Therefore I convinced myself that for me this was normal, but deep down I always knew that there was a difference between me and others around me that no one could understand. I couldn't even understand it myself.

In middle school and high school I struggled socially and emotionally like many other teens. Schoolwork was especially difficult for me, but lots of people had a tough time in that area. My parents and I didn't agree on anything, but my friends didn't agree with their parents on anything either so I thought that all I was going through was normal. I was sent to various therapists. but none of them seemed to have any answers that could help me. I was incapable of everyone's expectations and because no one knew the deeper issue I had, everyone thought I was just being difficult. I hated the person I had become and I wanted to be better. However, I couldn't and I didn't know why.

At the age of sixteen my high school guidance counselor suggested I be tested by Barbara Jones, the school's psychologist, to get into more assisted classes. As far as I'm concerned, Mrs. Jones is one of the people who saved my life. With my parents' permission she contacted my neurologist in Indianapolis and was able to search through my files. Mrs. Jones gave my parents the final results of the testing and in the report it stated that I had a Hypothalamic Hamartoma. My parents had never heard those two words together before. My mom immediately searched the Internet for information about Hypothalamic Hamartomas and found an online support group with extensive information about the rare tumor for families of children suffering from it. People who have this tumor suffer from gelastic, or "laughing" seizures that only occur with the tumor. I had been having gelastic seizures my whole life, but it was never diagnosed what type of seizures they were. Just a few years prior to our discovery of the tumor, a surgeon in Australia had perfected a way to successfully remove the tumor without permanently damaging the brain. The patients suffered from short-term memory loss for about a year after the surgery because the surgeons must pass through the short-term memory section of the brain to reach the tumor. Fortunately the effects were not permanent. The patients were seizure-free after the surgery and finally able to live a normal, independent life. At the time my parents found the support group a team of doctors at Barrow Neurological Institute in Phoenix, Arizona were also successfully performing the surgery taught to them by the doctors in Australia. My parents sent off all of my medical files from the past sixteen years of my life to BNI and I was approved as a candidate for the surgery. On November 19, 2003 my tumor was successfully removed and the moment I woke up from surgery I was a total and complete different person. Finally, I am the person I have wanted to be my entire life.

After surgery I lost all short-term memory. I could remember everything that happened before surgery, but nothing after that. Gradually my memory improved and at this point it is fairly normal. It has taken over a year and a half to progress to the recovery point I am at now. From two months after my surgery until my completion of high school in June of 2005 I was homebound taught by a teacher Bloomington North High School provided for me. I was not at all prepared to be in a classroom yet so I was able to do all of my work at home and receive full credit. My homebound teacher was amazing and all the counselors at BHSN were very accommodating to my situation. Thanks to all of their wonderful help, I am now able to attend college.

Since surgery many people asked me if I feel any different. I always tell them that it is easier for me to explain the things about myself that are the same than to count up all the things that are different because there is hardly a single aspect of my personality or life that is the same as before surgery. It's almost as if I've had a brain transplant because that is how different I am from before surgery. I feel as if I am a butterfly who can experience the world from a different perspective unlike the caterpillar I was before surgery that was limited to doing very little. Pre-surgery there was no hope of me ever being able to live a successful, independent life, but now I can finally spread my wings to go places and do things that before surgery would never have been possible. I owe all of my accomplishments to the wonderful doctors at Barrow Neurological Institute in Phoenix, Arizona, my teachers at Bloomington High School North, and the thoughts and prayers of my friends and family.

--Megan