Monday, February 9, 2009

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.

2 comments:

  1. Hi Beth. I remember reading about you in the Baltimore Sun in about 1987 I think it was. I often wondered what ever happened to you. After googling several combinations of phrases I found this site. It makes me very happy to see that you are happy and still making a go of life. Good for you!!! I have had some tough patches in my life, so I can relate to you. Thanks for posting, and please keep posting!!!

    Bill Nestor

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  2. Beth, I'm not sure if you remember me (I hope you do), but I worked at the after school program when you were in middle school and you once came with me to one of my classes at Eastern. Also my Aunt Dot works in the library at an elementary school in Mansfield with you. Anyway, I've thought of you often, and have searched for you on facebook (couldn't find you), but I googled you today and found this. I know of a little girl (12 months old) near where I live in Florida who is currently undergoing a hemispherectomy. I also noticed that her mom (Jennifer) is following this blog. [You haven't updated in a long time!] Anyway, I hope you see this and that we can get in touch and also that I can put you in touch with Jennifer and her family because I know you will be a valuable resource to them. My email address is jmtscaringella@yahoo.com.

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