Epileptic Connect Group

– Essay by Katelyn Brunner – 

 

Supposedly AA starts the same way. 

“Hi, I’m Katie. Or Katelyn, but I’d like Katie more for here. Everyone at work calls me Katelyn.” 

There’s an intro, then you move on to the secret shame: 

“I’ve had epilepsy since I was sixteen. Well, I was diagnosed when I was sixteen.” 

I was the ninth to speak and was still a little uncomfortable, a feeling I’d discuss with my therapist that coming Tuesday. The small room was full. There were thirteen of us crammed around a corporate conference table, elbows touching. A smaller table against the far wall held three bottles of supermarket brand, flavored sparkling water, a plate of cookies, donut holes, and a bowl of ice.

Heather was next to speak. She doesn’t wear a medical bracelet, which (to me) screams: I have a death wish! “I’m Heather. This is my first time here,” she said. 

We didn’t all reply “Hi Heather” in chorus like you see AA attendees do in the movies, but rather, there was a beat of silence after her name. 

“I’ve only had epilepsy a couple years,” Heather continued. “I’m 25 now so I guess I got it at 22?”

 It was a question because most things are questionable for us. Being able to trust one’s brain is a luxury, and I’d give anything for it – all of us would. Of course, my memory isn’t the only thing that’s injured, but it is what bothers me the most, when I’m “thinking too much,” as my mom says. I know I’ve lost many moments, but I’ll never know how many, or how I felt about them. Sometimes I get harsh reminders. For example, I’d like to remember my visit to New York in 2008, but I didn’t know I’d gone until someone showed me the photographs. I was smiling. 

Now Tammy, the group facilitator and a stroke survivor, added to the introduction directions, asking to share the best and worst parts of our Januaries. 

Heather looked uncomfortable but confident enough, like she knew she wasn’t the most impressive member at the table, but was also aware that she was doing well in comparison to the regulars of the group. “The worst part of this month was the déjà vu – it came back…” Heather said. She doesn’t mean the mild tingling and disorientation of the dreamlike, I’ve been here before variety. Epileptic déjà vu is a temporal lobe seizure accompanied by hallucinatory episodes, heightened senses and paralyzing fear.

“The best part of the month was that I got a job. I mean, I’m only cleaning houses but it’s money and the work breaks the routine.” 

People nodded and made approving humming sounds.  

Following Heather’s speech, Jacob’s caretaker, Georgette, stood to speak for him even though his voice hadn’t gone yet. “Jake has MS and recently started having seizures…” she looked to him for confirmation; he nodded and pushed the hair out of his eyes. 

“We’re mostly here for information,” she continued. “We go to an MS group, too. Sorry if I end up talking too much – or if I’m intimidating. I just want to help and I’m a chatterer! And a hugger!” She vomited this stuff like those are forgivable things, to a room of people who startle easily and dangerously. Jacob sat still, head bowed, as if his mom were embarrassing him.

I went to the group for entirely selfish reasons. The point of these sessions was to connect, to sign up for walks and times to teach seizure aftercare at the booth at the state fair – to help run the Epilepsy Foundation. But my attendance did not come from a charitable place. I was afraid to see and be seen. However, my therapist told me to go because I told her I wanted to confront my fears in the new year. Cognitive decline is not something one looks forward to or even sideways at. But I gathered my courage and went to to assess the “damage,” an approach of which I am very ashamed. I know (and knew) I should not think of them like I think of myself. 

But this is not a cancer story so I’ll tell you there was damage. There were worst-cases, people who have had seizures all their lives that continue to chip away at their only brain. Then there were people like Mark, who’s only had a few.

I noticed that most of them talk like me, with earnest repetition similar to the stammering of little kids who can’t quite get their words out. To me, the observation was simultaneously sobering and comforting. It reminded me that in a way, at least I belong somewhere. These people might not know me, but they see and understand me. They know just what to say. People outside “Adult Connect” rooms and therapy groups just don’t have that knowledge. 

But I can tell you what many of us want to hear. We want validation – an acknowledgement that yes, what we deal with is terrifying and we have a right to our paranoia. We want you to tell us that feeling suffocated by our regimented lives is natural. We’re not a community by normal standards; we’re not an active bunch, but we do have a profound understanding of one another. We are often very different – but we’re all scared. 

I told my therapist I identify with the word “disabled” more than I do any other label. Regardless of whether or not I go the rest of my life without experiencing another seizure, I still can’t give blood, I have to lie on HR forms, and I have mental and physical scars that’ll never heal right. A lot of epileptics don’t like the word “disabled” because it gives people the idea that we’re less than able, but I like its honesty. We should not deny our conditions – or encourage delusions. 

“He talked to me like I was stupid,” Heather said to me. 

It was “mingle time,” just after we’d finished introductions and discussed some issues as a group (the usual: discrimination, meds, preventative research, etc.). Heather and I were huddled together in a corner, clutching party cups filled with lukewarm sparkling water. We were talking about the specialty epilepsy clinic we both go to: MINCEP.

“And who do you usually see there?” I asked. 

“Dr. Craig.” 

 “Really? Me too!” 

“Don’t you just hate him?” She grimaced. 

I furrowed my brow. “I don’t, actually.” 

 “Ugh. Why not?” 

 “Honestly? It’s because he’s objectively the best.” 

She reluctantly nodded at that. “I guess. It’s just that he’s so mean!” 

My eyebrows rose. What did she want, hand-holding and a hug?

 “He publishes, his research is cutting-edge, and frankly, I don’t give a shit about his personality if he can treat my seizures well.” 

What I didn’t say was that he’s actually a kind, awkward man who blushes if you mention that you’ve read his research. He also remembers to ask about my thesis when I go see him. I like Dr. Craig. He’s a good man and a great scholar, but self-righteous young women don’t like to be argued with, so I kept my mouth shut. 

“Oh,” she said, deflating a bit. “But doesn’t he talk to you like you’re stupid?” 

 I cocked my head to the side, surprised. “No. Does he treat you that way?” 

 “It’s like he’s…unfeeling.” 

I crossed my arms and said, “Look. If he talks to you like you’re dumb, just tell him you don’t appreciate it. Fight for your own health, Heather. You are the patient, you have the power.”

She scoffed and murmured a disbelieving “uh huh.” 

 I immediately felt her youth. With only two years of epilepsy under her belt, she hadn’t gotten to the resignation the rest of us had reached. She didn’t understand yet. 

I pinched the bridge of my nose briefly, then said “At the end of the day, you gotta remember that nobody cares. We do the work. We’re the ones calling insurance agencies, we’re the ones ordering our own bloodwork, we’re the ones waiting to hear footsteps outside our clinic room’s door. Tell him what you need, and don’t be afraid of an argument. You’re the one in your body, and ultimately, you have to live with whatever’s decided.”

I smiled and tried to look less fierce. “I guess what I’m saying is don’t let him bully you, OK?” 

Heather nodded. I awkwardly patted her on the shoulder.

“I just always feel so stupid,” she said, quietly. 

“Me too. But…it’s not something to be ashamed of.” 

“Even outside the doctor’s office?” She looked down at me, brown eyes wide. 

I was silent for a few moments as I tried to put together a response that wouldn’t hurt her.

“Sometimes,” I said, “you just have to accept things. At least you’re not…you know.” I gestured vaguely at the other end of the room, at the rest of the thirteen.

“I guess you’re right. But don’t you wish…..?” She let the sentence trail off. 

I gave her a tired smile. “Yeah. I wish.” 

***

 

Katelyn Brunner is a freelance writer and copy editor in St. Paul, MN. Between work and personal projects, she is pursuing a Master’s degree in English from the University of St. Thomas.