Epilepsy: A Brother’s Perspective

“Sometime in the morning a couple of years ago,” Connor Roane began. “My dad came out and found [my brother] … seizing on the laundry room floor. It lasted for a couple [of] minutes. It was in the morning so no one knew he was up. He was transported to the hospital where he got diagnosed with epilepsy.”

In the fall of 2017, Spencer Roane, age 11, was diagnosed with epilepsy. It was sudden and “I remember him being really scared,” Connor Roane told me. Connor Roane is Spencer Roane’s older brother by about three years. He attends Bellevue College full-time as a Running Start student.

Connor Roane explained that “I didn’t get … freaked out or anything by it. I didn’t really know what epilepsy was before. I remember when my parents told me stuff like that I just … thought of it as like ‘oh wow that kind of sucks.’ I was like, you know, in the mentality of we’re going to get through this, or I’m going to help my brother get through this … I’m gonna be able to help my family get through this. It’s gonna be okay. Not the mentality of, you know, … ‘oh this [is] going to be life-changing for my brother.’”

The first three or four times Spencer Roane experienced a seizure, he unfortunately experienced a grand mal and had to be taken to the hospital in an ambulance. Thankfully, it didn’t take much longer than that for him to be stable and on medication. The side effects were always prominent, with one leading to a more aggressive mood. But eventually, Spencer was lucky enough to be completely stable due to his medications.

“He’s had multiple EEGs and at first it came back as very plentiful of absence seizures,” Connor Roane said. “He’s stable [now]. He hasn’t had a grand mal seizure in a while. His most recent EEG has shown zero absence seizures.”

This is exciting news for Spencer Roane because “at one point he had upwards of 100 absence seizures … in a 24 hour period. If you have all [of] these absence seizures and you miss all this time, [it] just made him have to go back and relearn a lot of things,” Connor Roane explained.

As much as Spencer Roane “learned to cope with epilepsy in his life,” it still took him a while to do so. He would go through many electroencephalograms (EEGs). Mostly 24-hour ones, sometimes with an 8-hour sleep deprivation prior. “I was pretty much there for every EEG,” Connor Roane said since Spencer Roane was able to do a lot of them at home. Connor Roane even stayed up with Spencer Roane to keep him awake when he needed to be sleep-deprived.

When Spencer Roane was first diagnosed with epilepsy, “he had to stop biking for a while.” This is similar to Leah Ehrenstrom’s case in last week’s issue. Connor Roane said the same about swimming. “Still to this day, [he] swims very supervised. Like everyone watches him when he swims to make sure he’s not having a seizure.”

Despite the baggage that epilepsy bombards on your life, Connor Roane explained that Spencer Roane “is who he is and he’s unforgiving in that way … He’s always kind of been like ‘this is who I am and that’s just how it’s gonna be.’”

Connor Roane recalled a very impactful moment between him and his brother. “I used to go to school with him … he found a pen on the ground and he decided to … put it in the lost and found because he didn’t want the person to lose their pen and I thought that was like the nicest thing ever. ‘Cause if I found a pen on the ground, in the hall, I would be like ‘my pen now,’” he laughed. 

Connor Roane describes his brother as loving, bold, and excited. “He’s excited for whatever is next. He wants to do big things and he wants to be happy. Above all, he’s one of the nicest people I know.” In conclusion, Connor Roane stated that “his [brother’s] epilepsy definitely doesn’t define who he is. His niceness defines who he is.”