Toney is a True Epilepsy Advocate

by: Toney Kincaid

I have chosen to share with you of my struggles and many hardships including decimations. But let me share a little history on my disease. Epilepsy was first written 4000 before the birth of Jesus Christ and our modern church.  And had a stigma even in the early years the early years the God’s though seizures gave people super strengths knowing the future. Many preachers teach that according to the Bible seizures are demon passion from the Devil and his angels. My seizures started while I was a student in the Davidson County Collage in Business Law and I started having severe headaches and uncontrolled nose bleeds. Many times I drove to school and did not remember driving nor where I parked my car. Near Christmas 1970, I became unconscious and later woke up in the North Carolina Baptist Hospital, I was told that I had an AVM that ruptured in my brain and the bleeding had to be stopped. They gave me the choice to do nothing or have the surgery with a 5% chance of living. I chose survival and a Priest came and gave me my last rights then my blood pressure dropped and I went into a coma. After 14 hour surgery and 9 pints of blood I did survive the surgery and was in a coma for two months. When I came out of the coma I was paralyzed on my left side and I could no longer talk. It took me two years of shock therapy on my leg and arm And I had to learn to hold a spoon along with much hard work. I can now walk and talk. During this time I started having seizures and was placed on a large regiment of medication that had too many side effects. I wanted to go to work but once I told employers I had AVM surgery every door I went to was slammed in my face .I  did get enough  control and I did get a job with Duracell Battery company. During this time I got married and had 3 wonderful boys.  On my tenth anniversary I had a grand mal   seizure in front of 200 ladies in the lunchroom, When I came out of it I was very confused. I was in the plant nurse office with the plant manager and he told me I was fired and never could get a job from them.   Losing my job I lost my income, health insurance and self worth. Within  a month the North Carolina Department DMV had a State trooper come and take my driver license. I had my wife and three children to support with no way to do it. This stress caused my seizure control to skyrocket off the chart. Then my church rebuked my membership because in their Bible and beliefs I was possessed with the Devil and his angels and they could come out of me and enter into the preacher or members causing them to kill themselves. I left and till this day I have not received any contact from my church.  I was buying my home and could not find ways to make the payment and had to sell my life insurance and grave plots. My wife went to work to keep us afloat and to get insurance on me. In those days insurance was required to pay up front, then insurance would return 80% back once you met your deductible, We could not use it except for emergencies for the kids. This forced me to go into medical research being a genie pig taking unproven medications to see what it would do to my body or control my seizures. I was in their drug studies for 5 years and  I was  having over 3000 seizures per month.  My Research doctor J. Kiffin Penry told me not to make a return appointment with him because he could not find anything to help me.  He suggested for me to go home and get my arrangements made for I would not live another month. What a shock to me and being of strong Christian faith I did hold on to my faith. My children told me they were afraid to go to school thinking they would come home finding me dead from the seizures. I was told this by them years later. They saw me seize at the dinner table and fall to the flood jerking uncontrollably. 

The things I endured during these years: 
1)      Refused marriage license
2)      Could not vote
3)      Could not attend or excepted by any church
4)      Refused entry to movie theaters
5)      Refused public transportation
6)      Refused first class treatment
7)      Denied from eating in public restaurants
8)      Denied proper education in public schools in regular classes
9)      Constantly made fun in school from teachers and classmates
10)   Unduly punished in class because teachers have not been educated in the recognizing  a seizure.

My list can go on and on. But I am interested in making things better and many are not. I became seizure free in 1993 through my research of the Vagus Nerve Stimulation (being the first in the world to be implanted) . It is called a pacemaker for the brain. From my life experiences with Epilepsy and dealing with people I have dedicated my life to advocate for those of us that cannot speak for themselves. I appreciate you allowing me to share my story with seizures. I was near death three times from this disease. Thank you for reading my story- Toney E. Kincaid-President and CEO of Epilepsy Association of NC