I was supposed to meet Brent for lunch last week so he could share his story about living with epilepsy for the One in Twenty Six blog. We were both looking forward to meeting at 1:00 in the afternoon. Then, at 11:49, Brent sent me this email:
I have I Kristin I now no to that no now that no no hard not met need new
Confused, I sat at the spot where I was working at my kitchen table and wondered. Brent was normally articulate and brief in his email exchanges. Was this a new creative spam email or some type of virus? Or was Brent playing a joke on me? Worse yet, was something wrong?
I got my answer a few minutes later. In an email that I later learned was written by a co-worker, Brent explained his previous scattered message:
I have to cancel our meeting today at 1pm – just had a seizure and am going home.
My heart sank. I knew that Brent continued to struggle with partial seizures and grand mal seizures despite taking several different anti epilepsy medications. He had had a grand mal seizure at his office, where he works in internet marketing at a telecommunications company. Unfortunately, events like this were not unusual for him.
When Brent and I were finally able to meet this week, he brought two notebooks with him. One notebook was filled with notes detailing his experiences with epilepsy, the other notebook was filled with lists and notes that Brent’s wife and family members used to help re-train his memory and teach him to speak again after his left temporal lobe surgery in 2009. The second notebook sent a chill up my spine. I could see Brent cringe and his eyes well with tears and he flipped through the pages filled with notes from a different era.
Words were written in big, block letters with just a trace of feminine curvature in crisp blue ink on page after page. One of the early pages was titled “YOUR FAMILY –>” and followed by a list of the family members and animals that lived in Brent’s home. Another page was adorned with a life-sized sketch of a human hand and labels pointing to different parts of the hand. Arrows pointed out “Knuckles.” “Fingernail.” “Palm.” Another page of Brent’s notebook strayed from the business-like block letter approach and was decorated with a thick bubble-letter message from a devoted wife. “Julie loves you. Brent is awesome.”
Brent showed me one of the last pages of his notebook with averted eyes and said, “you can read this. I can’t read it or I’ll get upset. It’s a promise I made to myself when I was in the hospital after my brain surgery.”
Touched that he would share this with me, I read a message written in shaky handwriting.
Brent, you’re f****ed up. You’re sick now but you’re going to get better.
One day soon you’re going to get out of this place and you’ll be able to ride a motorcycle again!!!
I looked at Brent after I finished reading and felt the disappointment brewing deep from within.
“This upsets me because I still haven’t fulfilled my promise,” he said. “But I still hope I will some day.” Because of his persistent seizures, Brent’s primary mode of transportation around town has been via bicycle or with his wife, parents or other family members who live nearby. Brent is quick to point out that he is lucky to have parents, a sister, a wife, and friends who help him with transportation and help him when epilepsy strikes, but he longs for the day that independence will be his again.
When Brent describes his history with epilepsy, he always begins with the year before the seizures began. “The period from 2006 – 2007 was the best time of my life,” he proclaims, as a smile dances across his lips and his eyes glaze over with pleasant memories. “I married my wonderful wife, Julie, in 2006 and in 2007 and I won a national award for online journalism in the Outstanding Use of Digital Media. In 2007, Julie and I bought a 1988 van and put a futon in the back and drove to Yellowstone National Park for our honeymoon. We had a fantastic time.
“On New Year’s Eve 2007, Julie and I were in Florida and we were planning on going to the Outback Bowl the following day. Out of the blue, I felt horrible — no, worse than horrible. I sat with my head in my hands the whole time at the Outback Bowl because I felt so bad.”
Brent and Julie flew back to Wisconsin and later that week Brent saw his doctor and he was diagnosed with the “stomach flu.” Several days later, Brent and Julie were at home when Julie heard a thump and found Brent splayed out on the floor having a tonic clonic seizure. When Brent was taken to the hospital that night, he had recurrent generalized seizures with almost no break in between. A spinal tap confirmed the diagnosis of viral encephalitis. “I felt like I was dying that night,” he remembers. Although the details of that long night are murky in Brent’s memory, he remembers waking up in between every seizure, looking his wife in the eyes and telling her that he was dying but he loved her.
Brent states that the infectious disease physician on call that evening told his wife that he had a 50% chance of living through the illness.
Despite the dire predictions, Brent was discharged from the hospital three days later. On the way home from the hospital, Brent convinced his wife and his friend that he’d like to stop for food. Not long after they sat down to enjoy some chicken pot pie (“which will forever be known in my family as seizure-pot-pie,” Brent states with a smirk) he succumbed to a seizure and was promptly brought back to the hospital. And so began the litany of hospitalizations and emergency room visits, medication trials and switches, and a life pock-marked by epilepsy.
As a way to cope with uncertainty, Brent has developed a healthy sense of humor about epilepsy. At the end of our time together, Brent listed his “best seizures” by finding something memorable in some of the most fearful moments of our lives:
- “Once I had a grand mal seizure at a movie theater just before my wife and I were able to go to the movie. We got our money back. I thought that was pretty awesome.”
- “I had a seizure at a furniture store and ended up buying the couch that I fell on. As I woke up, the salesman was blessing me as if I had demons.”
- “One time I had a generalized seizure at Brat Fest in Madison (a big festival where thousands of people come and eat bratwurst.) My friends were with me and formed a protective circle around me so no one would see or could get near me and waited for the seizure to end. I was pretty touched by that.”
- “I had a seizure at PDQ once and someone stole my phone when I was unconscious. That still makes me mad to this day.”
Through his frustration, Brent continues to find a positive spin on his life with epilepsy. “It’s made Julie and I grow closer, it’s given me perspective about the things that really matter. I don’t get worked up about the little things any more. I have tremendous support from my wife, my family, my employer, and friends. I couldn’t have done this without them.”
Brent sent me one last email last night that I think sums his perspective up perfectly:
” I always want to tell all the others out there with epilepsy or any other challenges, as much as you think your future has failed it hasn’t. People will surprise you and I don’t think things happen randomly for a reason but I do believe things do happen for a reason.”
I believe Brent will keep his promise to himself and ride a motorcycle again some day.
All in good time.
Please pass it on.
Brent’s co-workers made him a brain cake before his brain surgery
Brent and Julie have established a dog wash and fundraiser for CURE called “Dog Days” that has raised over $8000 for epilepsy research!
Brent’s first day walking around Madison after a long period of depression and despair after epilepsy surgery felt like he was “coming out of the darkness.”