2023 - Walk to End Epilepsy

   My brother took this photo Nov. 27, 2011 after the Indianapolis Colts lost to the Carolina Panthers. My Colts had been beaten 27-19, the team’s 11th-consecutive defeat in the Peyton Manning-less season. In spite of the awful outcome, I still have the ticket stub.

   Not to remember the Curtis Painter era of Indy football.

   To remember the last time I saw my little brother alive.

   Less than 24 hours after the final whistle, Nelson Tyler Gunterman was gone, taken by SUDEP (Sudden Unexpected Death in Epilepsy) at the age of 28. It has been 10 years without him. In some ways, it’s impossible to rationalize the length of time that has passed. In others, it feels as if he just left. SUDEP is cruel and destructive. It has left me searching for nonexistent answers. How does one cope with “I don’t know” as a loved one’s cause of death?

   Basically, I don’t.

   And I never will.

   Remember those dreams you’d have as a kid that were so realistic you’d wake up and truly believe the perfect Christmas gift had arrived? Remember the pure disappointment following the realization it was all imaginary?

   That’s what it’s like dealing with Tyler’s death. Every morning.

   He’s very much alive in my head as I sleep. He’s cruelly taken from me once I wake, replaced by the traumatic, vivid memory of the emergency room staff pulling back the curtain. Dealing with this is a daily test I regularly expect to fail.

   It’s not that I am lacking support. My friends, and those who knew my brother, are quite compassionate and always exhibit empathy for my family’s unimaginable tragedy. But that’s the problem. They’re TOO kind.

   People take huge verbal detours to avoid anything they believe would remind Tyler’s loved ones that he has left this Earth. In fact, most don’t even mention my brother’s name due to the off chance it would inflict further emotional harm. So they don’t. But it doesn’t matter.

   Nothing anyone can do will make Tyler’s absence less torturous.

   I’m hurt each time I can’t offer him a spare ticket to an event. I’m silent when I want to vent to him about the silly family drama that accompanies each holiday season. I’m devastated every time I remember my daughters will never know the sound of his voice. My brother’s life being the subject of conversation doesn’t even come close to triggering sorrow.

   You can’t trigger what never goes away.

   In reality, I want others to never stop reminding me of him. It’s one of the few things guaranteed to bring me joy. I love remembering all that he was, laughing at his actions, or just imagining how he would react toward various circumstances in today’s society (SPOILER: with sarcasm). That’s why I’m proactive in putting a spotlight on my missing sibling. Not just for myself, but so others may avoid what my life has been for the decade without my best friend.

   Every summer I flood social media feeds with information and donation requests for the Epilepsy Foundation of Kentuckiana. I simply cannot stand by and allow other families to experience the same inescapable void that will accompany me until my last day. This organization not only provides research and educational opportunities, but it is also invaluable to those living with epilepsy as well as their friends and family. The national foundation's SUDEP Institute reassures those of us who continuously deal with such unfathomable loss that our advocacy could produce answers previously unavailable to the one we miss most.

   I focus a little bit on what can be gained, giving a brief reprieve from all that’s gone.

   My little brother still has the ticket from that Colts game. It's in the front pocket of his shirt. Mine is in the nightstand drawer next to my bed. I look at it to remember how much fun we had that day and the many others before them. I also glance at it as a reminder to never stop supporting efforts to eradicate SUDEP.

   Because no one should experience all that I feel from staring at a simple ticket stub.