SUDEP

This is a statement I drafted at the request of the Epilepsy Foundation to further educate others on the reality of Sudden Unexpected Death in Epileptic Persons (SUDEP). Today is SUDEP Action Day, and so I use my words as action. I hope by painting a more intimate portrait of what life with epilepsy is like, more people would come to understand and throw their support behind fundraising and finding a cure. Thank you for reading.

https://give.epilepsy.com/page/33651/donate/1

My son, Jonah Winn, started having seizures at 14. I cannot tell you exactly when, and I absolutely cannot tell you why. There is no family history we can locate, and there were no physical indications that might help us understand. They simply began.  

At first, it just seemed as if he would wake up sick in the morning, pale and nauseous. The first few times, I thought he was just coming down with something. Sometimes he would report feeling “shaky” in his sleep. I didn’t really know what that meant. Other times his muscles would be fatigued and cramped when he woke up. I chalked it up to growth spurts occurring around the same time. 

And then one night when my husband was out of town, Jonah came to sleep in our big king sized bed with me for fun. I watched him have three grand mal seizures that night as he slept. My boy. 

Within days, he had an ER evaluation, CAT scan, EEG, and finally an appointment with someone I felt was an excellent pediatric neurologist. Nocturnal seizures, they said. Probably will grow out of them, they said. No safer place than a bed for a seizure, they said. Medication will control it, they said. It will all be fine, they said. 

I left the doctor, leaning hard on those words and chose then not to live in fear. He would have excellent care, these would pass, and everything would be okay. The word epilepsy was never used in any appointment I attended until I stopped going to them as he turned 18. His condition was only ever described to me as a Nocturnal Seizure Disorder. Maybe it just sounded less scary to say it that way, but I lived perhaps in a world apart, separated from those who actually suffered from epilepsy. It lulled me. 

Jonah grew and flourished throughout high school. He was a three sport athlete, a top student, Concert Choir and Madrigal Singer member. He grew handsome, strong, and had a work ethic so intense that we sometimes had to encourage him to hold things in balance. He was determined, kind, and truly cared about the wellbeing of others. He had a wise heart, and a passion for justice. Each year, he would still have a few breakthrough seizures, but with a medication adjustment here and there, they were relatively well controlled. It seemed like the doctor’s assurances could be trusted. 

He was awarded a full scholarship to DePaul University, where he studies Political Science and Economics. He helped found the Pi Kappa fraternity there, and was later elected as the second Archon, or president. He rowed crew, tended bar, and basically watched over all his friends, making sure they were safe, healthy, happy, and laughing. His nickname was Dad. During this time, his seizures continued to be a problem. Between his athletic commitments, continued growth, and the hectic life of a college student we felt like his breakthroughs could always be explained. That didn’t mean they weren’t humiliating for him and deeply troubling to those around him.

In college, he fell out of his top bunk once after an episode. Luckily his bedding rolled around him and unspooled as he fell, causing him to be gently lowered rather than be injured. He had several seizures in more public settings. Once, sleeping at a friend’s apartment after St. Patrick’s day celebration. Once, at a training facility for Crew in a common bunk room. Once, on a coach bus, driving through the night to get back to Chicago with his Crew team after a tournament. After that one, he woke up in the hospital because the bus driver pulled over and they called an ambulance. Mortifying. 

Even after all this, I never really thought he was in danger. In my mind I kept hearing “a bed is the safest place for a seizure. He will outgrow them.” Willful ignorance perhaps. I don’t know if any of his doctors ever told him otherwise. 

After graduation, he began to work in politics. He went to Iowa as a field organizer and then a campaign advance worker for the 2020 Presidential Race on behalf of Amy Klobuchar. After that, worked on Tina Smith’s election campaign. He then headed to Capital Hill to work as Senator Kobuchar’s special assistant. Jonah was dynamic, hard working, dedicated and idealistic. However, the stress of the work, the hours, and the lack of balance required of young political aids caught up with him. His seizures increased. He remembered less after each one and finally after waking up in a hospital, alone, not wearing any shoes, he hit his lowest moment. His roommates had found him having a seizure, called an ambulance and then had to go to work. Jonah was alone, confused, and had to get home to his apartment again with no money or footwear. I was on the phone with him as he traveled home in the cab and returning to his bedroom, where he looked around and tried to piece together what had happened. It was then that he decided it was time to come home for a while. 

Jonah returned to Minnesota and began working for the Mayor of Minneapolis as a Special Assistant and started exploring surgical options to help with his condition. We were disheartened by the probability of success we heard, and by the associated costs. His father and I went to one of his surgical consults with him. He and I were leary about the idea of brain surgery, and wondered if better bloodwork protocols and medication adjustments might help create balance without invasive procedures. As we listened to the neurologist, I asked about the risk of not doing the surgery, in other words, could the med route be preferable? It couldn’t be that risky to wait and see a bit longer, right? She attuned to me a bit more seriously, but she never mentioned the risk of SUDEP. Instead she said, “Well, we certainly don’t want him to KEEP having them. We want them to stop.” Of course we all agreed, and I took that to mean (as did we all), we could proceed a bit more cautiously and wait on the surgery for a bit. We left that appointment resolved to wait a beat on the surgery. 

Jonah started working with a new doctor, and began a new medication protocol. He left work in politics, and began to think about graduate school and new career paths that might create less stress in his body. He didn’t have a seizure between November and April. He thought he had finally nailed it. It was over. He told his Godmother he knew his seizures would be over at 25 and would never have them again. He was optimistic, deeply happy and ready to begin a new job for the University of Chicago on May 1, 2023. 

In anticipation, he moved out of his downtown apartment, back to our family home on April 3rd. All of his things were in storage, or with us. He breathed a sign of relief. A month of rest, family time, and peace, before his new adventure. He was in incredibly high spirits. That evening, I hugged him goodnight and told him I would see him in the morning. I lingered a bit in that hug. 

“I love you, Momma.”

“See you tomorrow, bud.”

And then our boy was gone. 

Jonah Winn was equipped to make a huge impact on this world. SUDEP did NOT need to claim his life. There is much we didn’t know, and much I feel like could have been done to prevent it or help us better understand the risk and our options. We would have gone to the ends of the earth for him if we had only known how. We will now, all of us, live our whole lives without the glowing contribution of Jonah, and so many other young people like him. We believe better access to care, seizure detection devices, and support networks are NECESSARY to stop the loss of these amazing lives.