Update to "my story" (and EVERYONE has one)

Well, my parents could not believe that I had been born with celebral palsy - they were told that I had surpassed all milestones as a newborn and toddler. In addition, I was an early reader and writer as well as a well coordinated athlete - I swam, played soccer, and took ballet classes. Was this a clouded assessment of adoring parents and had they missed some possible clues that something had gone wrong during my birth. My pediatrican reviewed my records and was incredulous - he was adamant that I did not have celebral palsy. What was going on??? I came home from the hospital after my first seizure in 1985 and returned to my kindergarten class. My teacher was very kind and patient with me but I was a handfull on the phenobarbital. Of course I had to be hyper active on it. My parents were still in shock from this first seizure but slowly getting back to "normal" - then - shortly before Thanksgiving another huge seizure knocked me off of my bed. My mother called 911 and an ambulance and many fire trucks raced to my house. Off to the local hospital where doctors and nurses crowded around me to figure out what was going on. After my grand mal seizure subsided, I was sent home on yet another anti-seizure drug. A few "quiet" seizure days passed but a new strangeness was about to begin. Normally right-handed, I found it difficult to write and eat with my right hand. Also, I began to trip and fall. My right foot would not move when I wanted it to - I started to use my left hand and began to walk with a slight limp. The seizures increased in quantity AND quality! My parents were frantic and insisted the neurologist admit me to the childrens' hospital for tests. They needed answers and were told that it was childhood epilepsy with no known cure. My only hope - the horrible anti seizure drugs which brought along nasty side effects of its own. Home again with more drugs. More drugs meant more trips to the hospital for blood work to be sure the drugs were not doing too much damage to my liver. I remember these trips - I hated them but my mom would try to make them bearable. She would put me in my best dresses in the hopes that those treating me would be kind and gentle. I developed a coping mechanism - one that I thought would make the doctors and nurses like me. I began to tell jokes. Knock-knock jokes were easy to remember and who can resist a kid saying "knock-knock"? I couldn't understand what was going on but knew that somehow I would get better. Christmas that year was a nightmare with my dad having to pull the car over several times because I was having a seizure. It was tradition that we visited our grandparents on Christmas Day and not wanting to change our routine we continued on our way. After Christmas I entered the hospital for another cat scan. My dad was in the midst of football recruiting for UConn and was out of state. My grandmother (dad's mom) went with my mom and me. After the scan, my mother was given the shocking news that whatever was going on in my brain was spreading. The scan showed more atrophy in my left hemisphere. A deathly black was in place of healthy gray matter. It was clear to my mom that something was eating away at my brain. She and my grandmother took me home and waited for my neurologist to call.

Inside Edition did not show my segment last night

Much to my dismay, I received a call from a producer of the show telling me that they couldn't fit the story on Friday night. My problem was that I told EVERYONE and I now had to tell EVERYONE that it was not going to be on - I didn't want anyone sitting in front of the tv waiting for me. My best friend, Jen, felt so sorry for me that she took me to a movie - we saw Seven Gifts with Will Smith - he was wonderful in the movie. He seems like a regular guy in real life as well - a few weeks ago, he walked into my brother's firehouse in Harlem just to say hi and to look around. He stayed about an hour and was a great guy. The firemen gave him some t-shirts which are really cool. It is snowing huge flakes tonight and it should continue until mid Sunday- I'm in!

Dr. Ben Carson - Gifted Hands

My neurosurgeon, Ben Carson, wrote a book about his life. He wrote about me! The website about the book can be found if you search - Gifted Hands Beth Usher

Also, my good friend Lary Bloom wrote a book about Connecticut characters and low and behold - I am a character - his book can be found on - larybloom.net/excerpts/Conn-ntbk.html

Yikes!!! I'm on Inside Edition tonight!!!

Well, tonight I will be on Inside Edition along with my parents and older brother, Brian. It was twenty years ago that I appeared on the very first show. You know how everyone wants their few minutes of fame? I felt so sorry for my brother - he really didn't want to be on TV but he did it for me. I now know that he truly does love me! My parents weren't sure if they wanted me to be on TV after twenty years but I was soooo excited. After all, if I can use my life's struggles to make even one person feel better about their struggles - then I am happy. The first show was nearly twenty minutes long but this one will only be about a minute. April Woodard was the interviewer, Paulie was the camera person, and Tony was the audio person. They were at my house for hours and they could not have been nicer! When I was seven years old I had a hemispherectomy - the only option (at that time) for a horrible disease called Rasmussen's Encephalitis. The disease reared it's ugly head when I was into my third week of kindergarten at the same school where I am now an assistant kindergarten teacher. I fell off of a seesaw. At that time everyone thought that the fall caused the seizure but we now think that the seizure may have caused the fall. In the school nurse's office, I had a grand mal seizure - I was aware and even reached my left arm out for my mom when she arrived. My mom took me to my doctor's office who immediately called an ambulance. Dr. Nelson Walker has been a long time family friend who is always there for me. After a day of tests which included a cat scan, blood work, and observations, my parents were told that I was born with cerebral palsy because of atrophy in the left side of my brain. They sent me home with a low dose of phenobarbital to control seizures but said that I may not have another seizure. (Well off to school - more later)