SUDEP Action

Making every epilepsy death count
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A decade ago, I was a graduate student in the PhD program at University and had just finished judging an undergraduate research poster competition. I was riding the bus back to my apartment when I received a horrible phone call from my mom. She said my dad has passed away in his sleep from SUDEP (Sudden Unexpected Death in Epilepsy).
We will come back to that. But first let me tell you about this remarkable person and how he got to this point.
One day in 1972, when my dad was 17 and had just left a place in Texas, my dad was in a terrible traffic accident. He was a passenger in a truck that was struck by what we believe was a drunk driver who had seemingly run a red light. The result was that he had a severe head injury. Little did he know it would change his life forever.
After weeks in a coma and after the doctors telling his family he may not live, my dad woke up and worked every day to live a "normal" life.
Without any memories before the wreck (amnesia) and short-term memory loss thereafter, he battled not knowing anyone in his classes, not knowing he was class president, not knowing he was president of his school's National Honor Society, not knowing he was a football player, and much more. To this day, I still don't know much about him before the wreck.
He once shared a story with me of how he was sitting in class after he returned to school and the principal called someone over the loudspeaker. His friend tapped him on the shoulder and told him that he was just called—he periodically didn't know his own name. He was taken to a room for a National Honors Society meeting and told he should sit at the head of the table. He asked why. They said he was the president and would lead the meeting. Of course, he was unable, but the level of respect he had at his High School was remarkable. 
This is one of many similar stories. Let me tell you more.
Time passed and he went to University for three years, to study drafting before his memory declined so much, he started making Bs, Cs, and eventually failing classes, all of which were the first time, I believe, that he earned less than an A grade. He had to drop out but took what he learned to be a productive draftsman. He would eventually sometimes work two jobs to pay the bills for the family. He later worked at a gas company checking gas meters.
He fell in love with my mom while they were living in Texas, and they soon married. They were happy and lived life like any other newly married couple would. My dad acted a little strange from time to time, which is why his nickname was "Weird Harold," but not much else seemed wrong.
Then in the mid-1980s, something started to change. 
He started having small petit mal seizures (he would stare into space without being able to speak and would smile big for no reason). No one paid attention the first few times. Eventually, he started having grand mal seizures (features a loss of consciousness and violent muscle contractions; it's the type of seizure most people picture when the person falls to the ground and convulses). He was in and out of hospitals after having grand mal seizures twice per month or even more frequently.
After a couple years and wrecking three cars, one while working, he reluctantly filed for disability in 1987 and never worked or drove again.
This crushed him, and the numerous drugs he was on and lack of ability to remember things, put pressure on his psyche and my parent's marriage—they eventually got divorced, remarried, and divorced again when I was young. He lived off and on with us to help pay bills, or with his mom, mainly with my granny during most of my childhood.
When he was at home, we would play baseball in the backyard and basketball in the front yard for hours. I have so many great memories of those times. He would go over my schoolwork with me while I was in home school. He was a math guru and taught me tricks along the way. He listened to me beating on the drums when I had little clue how to play, and later would go to my rock concerts when I was in a band.
I remember picking him up from his mom's and taking him to the neurologist at the Medical Center for years. I learned much about epilepsy, and how it can affect someone's life from reading books, watching my dad have hundreds of seizures over my lifetime, and talking with him about the struggle he had to deal with his situation.
He took roughly 12 pills per day and had a vagus nerve stimulation (VNS) surgically implanted near his chest that would send electronic impulses to his brain to help him have fewer seizures. It helped reduce the seizures over time from two per month to about one every three or four months. He would keep track of all his seizures, and I remember how proud we were when they were less frequent. 
Each time he had one, he would be exhausted for several days. He was always energetic and in a fairly good mood, so after he had a seizure, it was very unlike him to sit around most the day and not talk much.
I visited home, about twice per year (9-hour drive is too long to visit often), I would take dad out as much as possible and play pool, watch Astros games, and have fun. Without the independence to drive and few friends to take him anywhere, he spent most of his time at home and I tried my best to get him out and enjoy the world. 
He never complained about his situation. He did voice frustration that he couldn't drive or do things others could do, but for the most part, he lived a normal life and could do anything he wanted.
Years passed, and he moved in with a friend and me into a townhouse on June 1, 2008. It was my second year of graduate school. We would go eat breakfast in the mornings when I didn't have class. We would go for long walks and talk about my research, politics, and the meaning of life. That was how he relaxed; he would go on long walks. There was nothing better for him than being with family or alone with nature. He could get away from the thought of being disabled or feeling trapped in a body that kept him from doing the things he wanted. 
After I moved in with Emily, dad got an apartment in the same complex about 30 yards away. It was the first time he ever lived on his own and had a sense of independence since that cloudy day in 1972 when his life changed forever.
We would barbecue together, and he would visit us often. I am so thankful he had the opportunity to know Emily and she will have memories to tell our sons, Bricen Wayne, who is named after my dad Harold Wayne, Cooper Thomas, and our future children. 
Dad and I had many great memories together. He had some complications with his epilepsy, and I stayed in the hospital with him for a week as they did a number of tests to see if they could surgically repair the place on his brain that caused the seizures. They determined it was too risky because it was near the part of your brain that controls your speech, and he went on with his life.
After two and a half years (in December 2010) living near me, dad moved to live with my sister, Tiffany, and her family. He was excited about living with them and being around his grandkids, but he was upset about leaving his life near me. Although I missed him every day, I knew he was happy, and everything seemed fine.
Then that day came in 2011 when I was on the bus that I received the phone call from my mom. My mom said Tiffany had checked on dad after he seemed to be sleeping unusually late. She found him lying there, not breathing. My first reaction was to my mom telling me he was not breathing was: ‘Why not? What are you doing about it? Is he at the hospital?’ 
My mom had few answers other than: ‘Vance, he passed away.’
It was the first time that I had someone close to me die. The person that I did not live with much growing up, didn’t know much about his childhood, but had got to know much more during the previous two-plus years had suddenly, without any warning, passed away!
I was crushed. I screamed uncontrollably at the front of a packed bus and ran off the bus to my truck as soon as it stopped. I sobbed driving home and frantically paced back and forth around my apartment when I made it home.
My dad, one of my best friends, and the person I learned so many lessons from was taken from me. How could I go on? So many things raced through my head and I hoped that I would soon wake up from this nightmare. A truly life-changing event challenged me in ways that I’ve never been challenged. To this day, that moment still gives me chills and makes me teary-eyed.
Dad died from what is known as SUDEP (Sudden Unexpected Death in Epilepsy). 
My sister said that he went to sleep the night before without signs of anything wrong. The best explanation from doctors that we have is that he went to sleep, had a seizure, and his organs shut down. It was not painful, and he probably did not know anything was going on. Doctors say that even if he was in the hospital, there would be little chance they could have saved him. There is little known about SUDEP and what triggers it.
Somehow, someway, God has a mysterious way of working in our lives.
Prayer, family, and friends helped me through the hurt. Days, weeks, months, and years later I find myself weeping over the loss of my dad. To this day, I feel deep sorrow. However, I think about the numerous lessons I learned from my dad during my 29 years around him and treasure the many memories.
He loved music. He would sing to classic rock songs and loved Journey, Elton John, and many others. He would snap his fingers when dancing and would clap when listening to music. Music helped him release his worries, along with walking. He also loved playing pool. 
A man, with what some could consider so little left to live for, had so much courage to take on the world. No complaining and no handout. He would work every day if he could. Love others unconditionally and never give up is what I take from his life. 
There are too many who have less and live with many more problems than we do. If my dad can take on the world with his faith in God and his ability to see the sun shining with so many clouds around, it is easy to find hope and find beauty in this world. There is so much for us to be thankful.
Ten years have passed. Years that I will not be able to tell him the wonderful things that have happened in my life and those in the family. 
However, I have faith that he knows. I believe he is still watching over us and that we will see him again someday. I believe he is with Bricen and Cooper always. His bright smile is the picture in my head that I see, and it fills the hearts of all those who knew him. Years pass in a flash, but my dad's memory will live on. 
He was a wonderful father, pepaw, and hero. He will always be our family's hero. There is so much to say. His life is a testimony that I hope will bring joy and a stronger faith for others. I know it does for me.
I know he was a Godly, kind, smart, generous, loving, sweet, caring, empathetic, and more man. Thank you, Dad! I love you. 
Vance (Harold’s son)


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