Lisa-Marie Kinsman
Ulster, Pennsylvania

I was born in Boston, Massachusetts back in 1963. My parents thought they had a normal baby girl. They were told several times by doctors in Boston that this so-called staring that I was doing at the age of almost two years old was probably just a stage and I would outgrow it. I was not officially diagnosed with Petit Mal epilepsy until around the age of four.

School was sheer hell and torture for me; kids were so cruel and teachers back then were unwilling to educate themselves on epilepsy and what they could do to help me.

I was a home health-aide for years and loved working with the elderly and the handicapped. After having a seizure at work one day, my client called the visiting nurse at the company I worked at because she was worried about me. The nurse tried telling me I needed to find another line of work where I could be better supervised. I asked her if she was firing me and she told me I could interpret it any way I wanted to. I told her if she fired me due to my epilepsy which I had never kept secret from the company, that I would take her and the company as far as the Supreme Court and would OWN her and the company when I got through with them. I then went home and called the company and told them the same thing I told their nurse that day. She was fired the next day.

My seizures were getting so bad and so frequent I finally had to give the company my 30 days notice. I was dropping patients and forgetting to do simple everyday tasks. It killed me to have to quit working and get onto Social Security.

After I filed bankruptcy I moved down to Pennsylvania along with my parents. I was never able to live on my own because I was having so many seizures and was always hitting my head on something.

About a month after we moved to PA I met the man I was someday going to marry and his two children Katie and Ryan who only lived 100 feet away.

We were married two years later. But it wasn't smooth sailing. My mother had broken her ankle like four or five days before the wedding and had to have emergency surgery done to place a metal plate and some screws in her ankle. She was so stoned on painkillers she still doesn't to this day remember any of the wedding or the reception.

Then my brain decided to be difficult the day of the wedding. At least it had the decency to wait until after "the kiss". People thought it was just an exceptionally long kiss, but my husband finally had to inform the preacher just what was happening. He cleared the church so I could sit down, gather my thoughts, and recover from the seizure.

My Neurologist in PA told me after having seen him for two years and him trying different medication combinations on me that there was no more he could do for me, and he referred me to SUNY Upstate Medical University at Syracuse in New York with their head Epileptologist Dr. Andrew Bragdon.
A few months later, my husband Glen drove me up to SUNY to meet with Dr. Andrew Bragdon and Nurse Practitioner Lorraine Padden to be evaluated. Dr. Flynn back in PA had told Glen and I that they were having some miraculous results up there.

These two were awesome! They spent more than four hours with us, which really made me nervous. I was in panic mode thinking that this visit is going to cost us a thousand dollars, I sure as hell hope they take Medicare.

I went through all the batteries of tests...Video EEG, MRI, CAT scan, Neuropsychological testing with Dr. Charles Bradshaw who is also from SUNY, and a sleep deprived EEG as well.

I fought with Glen's insurance company for close to a year because Medicare was only going to pay 80% of the $100,000.00+ for the brain surgery if they decided I'd be a good candidate.

We got back from our 1st wedding anniversary down in Hawaii and were so thrilled to hear his insurance had picked me up onto his plan. I immediately called my Nurse Practitioner to let her know and to have her set up a surgery date for me.

December 13th, 1994 Glen drove me back up to Syracuse one more time. I went through two days of Neuropsychological testing with Dr. Charles Bradshaw, met the Neurosurgeon Dr. Mark V. Smith and was so ready to have these seizures lessened or cured. Back then I would have been thrilled just to have the seizures cut in half as I was having HUNDREDS of them a month, every month.

Dr. Smith woke me up from the anesthesia they had given me. The surgery was now going to start along with the WADA testing. I had to be awake for a good 90-95% of my surgery because my left hippocampus was so close to where my speech was located. They wanted to make sure I didn't lose my ability to speak. When they woke me up, I was ready to fight. I tried to get off of the operating table and DEMANDED a cigarette with several nasty adjectives included. Thank God Dr. Smith has a very steady hand and a wonderful sense of humor. They got me a nicotine patch and the testing and the surgery started once they stopped laughing and got their composure back.

The whole thing took 15 1/2 hours. I spent almost three days in ICU and another 5 days in a semi-private room. I went home three days before Christmas.
Glen came to take me home, after stopping off and getting me the best surprise he ever could have gotten me. He stopped at the barber shop and had his head completely shaved like mine was, so that I didn't feel awkward or out of place! He had the doctors and nurses all in tears when they saw what he had done. They told him no other spouse had ever done that before.

I have been completely seizure-free ever since my surgery almost 12 years ago and I owe my life to the wonderful doctors, nurses, and VEEG Technicians up at SUNY Upstate Medical University at Syracuse in Syracuse, NY. They gave me a life I never thought I'd see in this lifetime.

I now host two three hour chat rooms each and every week online. One on AOL called Epilepsy Chat I on Wednesday nights from 7-10 pm est, and one on Yahoo called Epilepsy Surgery Group 1 on Saturday nights from 7-10 pm est.

This is my way of paying back the wonderful doctors for all they've done for me. You'd be amazed how many people are still in the dark and don't realize there are several different types of surgeries out there for epilepsy. I feel it's my job to let them know that.

I've counseled well over 1,600 people online these last eleven years and won't quit until EVERYONE is seizure-free like I am or at least has their seizures well controlled with medications.
Anyone wishing to talk should email me at LisaM11463@aol.com or JoanofArc1994@yahoo.com