I was 17 when my mom, Pat, died of cancer. She was diagnosed in August 2003, and we said goodbye before October ended. I was starting my senior year of high school and learning, much sooner than I expected, how to live with grief.
When I was 24, my dad had a stroke. We didn’t know whether he had a health care directive, and I helped make the painful decision to take him off life support. Four years later, I had my first seizure at work and was diagnosed with epilepsy. It didn’t run in my family, and I had no idea what life with seizures would look like.
Those experiences taught me to take difficult days one at a time. They also led me to volunteer with the Epilepsy Foundation of Minnesota, where I heard from families facing questions I recognized: What happens next? How do you live with uncertainty?
Living the definition of adversity
That’s how I came to know Carrie Buck, her husband, Chuck Semrow, and their son, Cody. Cody began having seizures when he was 2 years old. Carrie shared how their family has navigated his epilepsy, the answers they’ve searched for and the small things that help them through the hardest days.
“About 10 months later, he had what appeared to be another seizure in his sleep, arms and legs rigid, head tipped back, and making a noise like he was choking on something,” Carrie recalls. “This time though, he didn’t have a fever, didn’t stop breathing, and regained consciousness after it, so I thought it was just something else that he was doing in his sleep.”
Fast forward four months, and Cody experienced another episode. After a visit to a primary care doctor and a neurologist, he was diagnosed with epilepsy. “We sat stunned,” Carrie says. “There was a young man at church who had epilepsy. He wore a bandana around his neck to catch drool, shuffled when he walked, and was largely nonverbal. My husband and I both had the same thought, ‘That’s what’s going to happen to Cody?!’”
Originally, Cody’s childhood epilepsy was a diagnosis doctors thought he could outgrow. Three years later, an MRI reading identified a structural defect in part of his brain called a focal cortical dysplasia which meant he will never overcome epilepsy. Later, Cody was also diagnosed with a second, rare type of epilepsy and has tried five different medications, one which actually started causing seizures.
“Cody’s seizure frequency worsened a few years ago. He went from usually one every couple of months to six seizures in three weeks, at which point his doctor said it was time to start surgical assessments,” Carrie says.
Despite years of seizures and electroencephalograms (EEGs), one of Cody’s seizures was never caught on an EEG, which helps confirm the origin of the seizure. During five days of monitoring, his care team limited his sleep and adjusted his medication in hopes of recording a seizure. Unfortunately, nothing noteworthy was captured.
“There is nothing predictable about epilepsy, and since it is so individualized with dozens of reasons someone might have a seizure, there is no clear, one size fits all approach,” Carrie notes. “Despite extensive education and experience, even the experts can’t say for sure what will happen in the future for Cody. And that has maybe been the hardest part of epilepsy. There are so few answers and so many unknowns.”
How to overcome adversity
Through the journey, Carrie has learned to be thankful for every day. “I write in a gratitude journal every morning at least three things from the previous day that I am grateful for, even if it’s something as simple as the really loud cardinal singing in my backyard. As a family, we also say every night what we were grateful for from the day. Cody has been grateful for his pillow and blankets and bed. That might sound foolish or forced to an adult but we really are fortunate that we have those things.”
Music plays a big role in her family. “When we drive somewhere, even just a few minutes away, we play music. We listen to songs that bring us hope, that are uplifting, sometimes songs that make us cry when that is what we need,” Carrie says. “During some of the worst days of epilepsy, I had music playing on both floors of our house so when I went to the basement, the same song was playing on the radio that was playing upstairs in my kitchen. I have found when I don’t sing, it’s too easy to get stuck inside my head and that’s often a depressing or angry place. When I sing, I have hope and don’t feel so alone.”
And it is completely fine if emotion overwhelms you. Carrie says, “On those really bad days, when I just can’t stop crying or reach out to someone else, I try to give myself some kindness and just accept that’s where I’m at today. I try to rest. I try to let go of expectations of what I should get done, let go of guilt about not getting enough done, or not reaching out to someone the way I think I should. Some days you just can’t do more than survive. And that’s okay.”
“The adversity we have experienced from battling epilepsy has tried to take away our joy. It has tried to diminish life, our enjoyment, awe, and gratitude for it. It has tried to make the future scary and dark. It has also made us stronger.”
Carrie continues, “Adversity makes you think it will win. Sometimes it does. It also makes you think you are alone. If you are alone in adversity right now, reach out. Now. Reach out to a family member, a friend, a coworker, a church, any of the incredible social service agencies the Twin Cities are blessed to have, a support group, your child’s teacher, a neighbor.”
Together, we will get through this adversity and whatever else may come our way.
This story was originally published in 2020. The family’s experiences and quotes reflect that time.
One in 10 people will experience a seizure in their lifetime. The Epilepsy Foundation of Minnesota provides great resources for those who have experienced seizures and families who face the adversity of an epilepsy diagnosis. Connect with them at epilepsyfoundationmn.org.
While you’re here, take a moment to read how I adapted after losing both parents before I was 25 years old and my journey with epilepsy.
If you want more, sign up for my monthly e-newsletter!