There is nothing like coming home from college and missing the Spring term your freshman year to have surgery on your ankle because you fell the very FIRST month of school and tore your ligaments in your right ankle! Is this fun? NOT! I was NOT in a good mood when this happenned that late Spring early Summer of 1989. I was 18 years and 10 month when I had ankle surgery on April 17th, 1989.
Mom and I found a Dr. Z in Irving, Texas to do the surgery and he ALMOST did not do it but he saw my films and saw the space between the bones in my right ankle and said, "Yes, I will go ahead and do the surgery." After surgery I was in a regular Plaster cast that weighed a TON it seemed! And I was on crutches which meant I was very wobbly at that point in time because I weighed so much! I was a very large person at that time. I weighed about 258 pounds. We made my upstairs bedroom moved down to the bottom floor after surgery.
My vision seemed to get funny about a month before surgery and a month after surgery it was doing the same thing. So,I told Mom and she said to drive to the Optical Clinic in Irving,Texas and have them look at my eyes. So, I drove my car over there with my left foot since my right foot was in a cast. They looked at my eyes and gave me a script for glasses. Well, a week later I was still seeing "things" so I went back and a DIFFERENT doctor was there. He took one look into my eyes and said I need to go STRAIT to the opthamologist office over the hill in Irving. I went to his office and he did some things to my eyes. Oh God how my eyes hurt! He then said my eyes were HORRIBLE and he was calling a specialist in Dallas, a neuro-opthamologist and I was to see him, THAT AFTERNOON! We had just enough time to drive over there and see him. He examined my eyes and said I was to have a CAT scan. His name was Dr. Peter Bringewald. I am telling you his name because he is the BEST DAMN DOCTOR for EYE PROBLEMS there is! He is in Dallas.
The CAT scan did not show anything, he said as he put up my films on the light board. So, He ordered an MRI of the brain. Afterwards, I calmy said, If there are no tumors, then WHAT is THAT? And I pointed directly at my tumor! His face drained of all color and he told me to go and have another MRI and then he told me he would call me in 2 days. He called me on May 8th, 1989 to say I had a tumor at the base of the brain, in my brainstem, and it was inoperable. It was a glioma he told my mother but he did not tell me that for about 5 years to come. He told my mother I had about 2-3 years at MOST to live and this was May 8th, 1989!Then, he told my Mom that the tumor blocked the flow of fluid and I needed a brain surgery right away.
He made an appointment for Mom and I to come in to his office the next day and talk to him. He explained the procedure to me. Let me explain what I have in my body for the rest of my natural life!I have what is called a shunt. It drains fluid from the ventricles of the brain, down outside the brain, underneath the skin, to the chest, or to the abdomen, or to the heart, or to the spine in rare cases but becoming more popular. Your brain has spaces in it called "ventricles" where it makes its own fluid where the brain bathes itself in this fluid it makes. When the brain has too much fluid in the ventricles, it is called, "Hydrocephalus". There is an Association for people with too much fluid, like me. We have an annual newsletter and much more!I have had a shunt originally put in the heart and now it was then put in the stomach and now it is in the chest and has been there for the past 5 years. That is the longest I have gone without a revision!After being diagnosed with this, I listened to the neruosurgeon who told me not to go back to school, and I got sicker. My vision got worse. I finally decided to FIRE that doctor and found myself a NEW neuro-surgeon! YEAH! I continued on with college, AWAY from home; which Mom hated but she knew she had to let me, and I graduated ON TIME with a 3.56/4.0 scale GPA and a 3.63/4.0scale in my major which was Computer Information Systems! I graduated on May 9th, 1992. I continued with college, even with having shunt revisions once a year. And a brainstem tumor which we later found out to be a lesion! I got a job in August of 1992 with the Missouri Highway and Transportation Department as a Computer Programmer. I made many lasting memories and friends at work there. I worked there for 2 years. I was on my deathbed when my Mom & my sister came up from Texas to come and get me to take me home. I was in such pain and agony.
I remember that I had bought a gun one day in Jefferson City, Missouri to kill myself with because I felt so bad and had so much pain. My counselor got the gun from me however. I thank god he did. When Mom came up to get me, SHE SAID, "My god Becky, If I was you, I would have put a bullet through my brain by now!"I will never ever forget that moment as long as I live. I told Mom that she did almost loose me and she was very lucky I was still here.
Since August of 1994 I have had many shunt revisions and 1 crainiotomy. My brainstem lesion is gone now yet I have found out that I have a genetic disease called "Cowden's Syndrome". I may also have "Neurofibromatosis Type II". I am waiting on blood work for that one. How does this affect me though? That is a tough one to call on.Being disabled has taught me a lot about life in general. You cannot accept things at face value. You must work at what life has been handed to you. Your faith in Jesus is so important. You must always be striving to research and learn new things. Of course, for about a year I was so sick it was all I could do just to get out of bed in the mornings! At least now I am going to school and communicate with others and get OUT of the house!
People look at you differently when you use the disabled's parking sign, like you are an infected individual and can pass on a disease or something. We are NOT like that! I AM NOT LIKE THAT!I wish normal people could walk in my shoes, just for a day, like a yuppie from Wall Street or something!I am more comfortable with a person wearing leg braces than I am with a person who has normal ability! If that tells you anything!
Guess that is why I am going back to school to Major in Music and do Music Therapy as my Degree and then get a Masters in Music Therapy. I would like to go to the hospitals and be able to GIVE BACK to the nurses and doctors and residents and caretakers that have given to me so very much the past 16 years with my brainstem illness and all.
Being disabled is hard but I am slowly adjusting. For a time I could not even remember anything for a few years when I had the tumor. So, it is really all new to me you might say. I am learning.
Lots of love to Karla and Karen Lynn. You two have been a source of inspiration for me!
Written by Becca E Henry,November 4, 2003 2pm CST
All rights reserved