Mar 29

Mar 29 Toney Kincaid: Why am I an advocate for Epilepsy?

Thomasville-based advocate Toney Kincaid is working with General Assembly members and building support for Sam's Law Bill-Seizure Safe Schools in NC.

Letter to the Editor:

By Toney Kincaid

Why am I an Advocate for Epilepsy? I speak for the millions of people that cannot do for themselves. Please allow me to share my story with you. At the young age of 19, I was attending college I and began to have severe headaches. They were so severe that I did not want to live with such pain and on many occasions, I thought about suicide to end this terrible pain. On November 12, 1970, while at my girlfriend’s home I could no longer keep my balance nor set up. I asked that my parents be called and take me to the hospital. The local hospital said I needed to be in a Trauma Center at once and I may not live long enough to get there. My brother drove me to the NC Baptist Hospital in Winston Salem and was told that I was dying and needed brain surgery. The hospital had a priest to give me my last rights and my parents were to give me my final farewell for they gave me 5% to come through it

I was rushed into the operating room and a 12 ½ hour surgery began. I had a massive Arterial Vascular Malformation rupture in both hemi fear in my brain. During this surgery I went into cardiac arrest several times and needed 11 pints of blood.

After several weeks in a coma, I awoke to find out I could not talk or move my left side. My doctors advised my parents to put me in a rest home for there was no hope I would ever get any better. My heart was broken for my life had only begun and I felt so alone. I began to pray like I had never before.

My step dad said I will take him home where he belongs till it ends. I don’t want to drag this letter on but it took me two years to learn to walk and talk. This fight was hard but God brought me through it. As I was able to return to my church my pastor said I hear you are having seizures and I don’t want you to come back again for I am afraid your seizures are demons and can jump into me or our members. I never have seen him again nor their members.

God rewarded me with the love of my life and we married and have 3 wonderful children. I worked at Duracell Battery Company in Lexington for 10 years before having another seizure. I was fired on the spot for the seizure seared people. I was fired, lost my health insurance and my NC Driver License. With this stress my seizures became uncontrollable. I had to go into Research Medicine at Bowman Gray School of Medicine just to receive experimental drugs for Epilepsy. After 5 years in their program nothing worked for me. Dr Penry told me to not make a return appointment for I was having 2000 seizures a month and could not live for 30 days and make my funeral arraignments.

During this time, I got a phone call from Cyberonics in Houston Texas. They had made a pacemaker for the brain and had it in an old dog but he couldn’t speak to them. I was asked to be the first one in the world to receive it. Long story short in two years I became seizure free for 22 years. And this device has helped thousands to control seizures.

To shorten my letter, I know God gives everyone gifts but most don’t seek this but I did. God let me suffer through this to teach me He wanted me to advocate for those that cannot speak for themselves. I hope you will join in with me and help the children in NC. God Bless- Toney Kincaid