My parents and I soon moved down to Pennsylvania What a culture shock that was. Going from the city to the country. I didn't think I'd ever meet anyone in Pennsylvania. In fact, my parents, myself and my two younger brothers had a verbal agreement for years that if anything ever happened to my parents, one of my brothers would take me in and care for me. None of us thought that I would ever be able to live on my own. I always pictured myself living with my parents or one of my brothers, sitting in a rocking chair on the front porch, and getting old. Who would ever marry someone who didn't know herself when or where she was going to have her next seizure?
A month after we moved to Pennsylvania, I met Glen and his two children, Katie and Ryan. I worked part time for Glen doing bookkeeping and cooking for him and his two kids, along with babysitting every once in a while. I knew when I met Glen that he was the man I was going to marry. Glen proposed to me New Year's Day 1991, around 3:00 AM.
I had hooked up immediately with a Neurologist here in PA when my parents and I moved here. Dr. Richard Flynn. He tried several different medication combinations on me over a two year span before he came right out and told Glen and I that there was nothing more he could do for me. He then gave me the name and phone number of one of the doctors who was going to save my life, Dr. Andrew Bragdon in Syracuse, New York.
Glen and I were married on October 2, 1993. Although things didn't go as smoothly as I would have liked. My mother had broken her ankle in three places four days before the wedding! Doctors weren't even going to let her go to the wedding. She was so stoned on pain medications, she doesn't even remember the wedding. To top all of that, instead of Mom coming over to help me get ready for my wedding, I had to go next door, bathe her and dress her, and make sure my niece Keri who was my flower girl was all dressed and ready. My sister in laws and girlfriend were so much help to me that day, I don't know what I would have done without them. The ceremony went without a glitch, until "the kiss". That's when my brain decided to be uncooperative and have a seizure. Of all times to have a seizure! The man taping the video tape was even nice enough to catch the seizure on tape. Thank God Glen was the only one who knew what was going on. Everyone else in the church just thought it was a long kiss. I would end up having four or five seizures that day.
Two months after we were married, Glen drove me up to Syracuse, New York to meet with Dr. Andrew Bragdon. How I dreaded going to see another doctor, and tell my medical history all over again. I was beginning to sound like a broken record. What a shock Glen and I got when we met with Dr. Bragdon and his Nurse Practitioner Lorraine Padden. They spent almost four hours with us! I began thinking, "oh my God, this appointment is going to cost us a thousand dollars". But it didn't matter. Dr. Bragdon and Lorraine Padden were the most compassionate, caring doctor and nurse I had ever met in my life. They weren't typical doctor and nurse who were in a hurry to get me out of the office and meet their patient quota of the week. They asked questions that none of the other doctors had ever asked me. Lorraine was looking over an MRI or CAT scan I had done previously and noticed that my left hippocampus was half the size of the right one. These two were like the Bobsey Twins, they thought alike, finished each other's sentences...it was freaky.
Dr. Bragdon told me that I might make a good brain surgery patient. I told him, okay let's do it. I was ready to do it then and there. I was so sick of the 24 hour auras, or what I thought were auras for many years. I was sick of being so overmedicated that I felt like a walking zucchini half the time. I just wanted to be "normal" like everyone else. I didn't want to stick out in the crowd anymore. The only three things I've ever wanted out of life were to meet the right man and be married, have kids, and have my seizures controlled my medications.
I went through the video EEG, blood tests, MRI, and CAT scan. Then all we could do was wait to hear if I would make a good brain surgery candidate. Come to find out, I was an excellent candidate. Now the trouble was getting Glen's insurance to cover what Medicare wouldn't. We went through an agonizing ten or eleven months of fighting with his insurance company, as well as calling dozens upon dozens of other companies, only to be told the same thing. I'm "a risk" and have a
"pre-existing condition". I'd have to wait one year to see if they would even consider covering me.
For our first wedding anniversary, Glen and I went down to Hawaii for a week. He was sure his insurance would eventually take me on and wanted to give me the vacation I would never forget, should anything go wrong with my surgery. We're like Ying and Yang. He's the optomist, I'm the pessimist. We got back from the best vacation I've ever been on to find out that Glen's insurance company picked me up. I immediately called Lorraine Padden up in Syracuse to tell her to schedule a surgery for me. I was finally going to be seizure-free, or at least cut my seizures in half. I would have been very happy with that.
December 12th, 1994 Glen and I drove up to Syracuse, NY one more time. Half way there I noticed Glen was extremely quiet and had tears rolling down his cheeks. I begged him to pull the car over before he killed us. I asked him what was the matter and he told me he was terrified for what I was about to go through. I said something to make him laugh, but can't remember to this day what it was. I told him everything was going to be okay.
I went through two days of psychological testing done by a Dr. Charles Bradshaw. He would also be there while I was in the operating room testing me during surgery. Then the big day finally came, December 15, 1994. The nurse came in early that morning to shave my head and give me something to help me relax. Easier said than done. I was a mental wreck by now. As they rolled me into the operating room, Glen was right there with me. His tears were rolling onto my face while I was screming that I was never going to see him again.
d
I was born in Boston, Massachusetts and raised in Lynn, Mass. most of my life. My parents thought they had a normal baby girl. But, much to their surprise, when I was approximately twenty months old I began staring off into space. My parents made several visits to the doctor, only to be told that I was probably going through a phase and would most likely outgrow it. I would not be officially diagnosed with epilepsy until around the age of four or five.
I went from Neurologist to Neurologist growing up. I used to call Massachusetts a name I thought was quite fit, Quackachusetts. After being molested by one of my Neurologists I hooked up with another one who told me one time that the medication I was on was not the reason my hands were continuously shaking, and that I should seek psychiatric help. My pharmacist was kind enough to look up the medication in his medical book and told my mother and I just the opposite that shaking was one of the side effects of this medication.
I was very fortunate to have found a kind elderly doctor in Boston...a Dr. Albert England. He commented that with all the medication I was on, he was surprised that I was still walking and that I was not comatose or dead.
He was kind enough to tell me the truth instead of just pumping me with more medication just for the sake of shutting me up like the other doctors had done to me for so many years. I was beginning to feel like I had never felt before....alive.
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