Chapter 9: Countdown to The Cut Out
April 2014
I operated on autopilot during the last days prior to surgery. At the time, I was consulting at an adult education program in South Boston, a position I’d held for eight months. My employer—I’ll call it South Boston Education Center or SBEC—affiliated with large Catholic institutions and operated by nuns. Staff knew I had epilepsy, and I’d discussed the upcoming surgery with my manager, Harvey. During April, I spent my time wrapping up loose ends with the intent of returning—perhaps even as a staff member—sometime after I recovered.
At home, I tried to prepare the children. Liam’s guidance counselor suggested sharing minimal information about my brain surgery until a couple days before the operation.
“I think you want to keep it simple,” Barry suggested. “Say something like ‘Mommy’s getting a cut in her head to make her feel better and hopefully to make the seizures stop.”
“But what if they ask more questions—Liam almost certainly will.”
“Then say something like, ‘Those are details you don’t need to know. Mom’s doing this because she has seizures, which makes you worry about her, and kids shouldn’t have to worry so much.’” I’d drawn my courage from that exact concern. Of course, the kids would also worry about the surgery, but I liked Barry’s suggested language.
Though I’d been doing my best to take care of business and maintain a sense of normalcy, the upcoming operation seemed anything but normal. My brain knew it too. Within a day of my meeting with Barry, I had three complex partial seizures. Joyce noted that perhaps the seizure cluster constituted my brain’s way of affirming the surgery decision, as if my brain were saying, See, the surgery might bring an end to this situation. Go for it! I thought anxiety about potential negative post surgery outcomes triggered the seizures.
Two of the three seizures happened at the kids’ school—one at drop-off, one at pickup. In the morning inside the building, I’d just had a brief visit to Liam’s first grade classroom where parents had been invited to see their children’s final art projects. I intended the classroom visit as a quick detour, since I had proposals to work on for SBEC.
My plan derailed when the seizure hit as I walked through the school’s dim first-floor hallway. I really didn’t remember much beyond the uncomfortable clutch in my belly. One minute I was in the hallway, and when I came out of the seizure, I was in the school nurse’s office. Somebody must have witnessed the seizure and brought me here. Who? Was Liam’s teacher involved? Did she notice the seizure? I saw the time—8:45. I hadn’t been there very long.
Flustered and embarrassed, I explained to Nurse Liz, “I’ve got to get going. I’m okay, and I’ve got to get to work.” All true words, but Nurse Liz’s furrowed brow revealed her concern.
“You sure you’re okay?”
“I’m fine,” I pronounced. I gathered my belongings to head home, where I worked on a grant application. By the time I went to pick the kids up from school, I had submitted the application, caught up on emails, and contacted a potential new babysitter. As I waited in the schoolyard for the kids’ dismissal, I wasn’t thinking about the seizure I’d had earlier. But when pre-seizure belly twitching kicked in, I knew where my brain and body were at.
Oh no, not again! And in front of the teachers, parents and the kids to boot!
I don’t remember much beyond the belly tingles—it’s likely I twitched and paced in the schoolyard, but when I came out of the seizure, medics surrounded me, a gurney nearby.
Had they put me on that? I wondered.
I scanned the yard, searching for Liam and Amelia and processed the implications of what just happened. Which parents saw that? What would they think of me now? What would the kids’ friends think of me, or them? I found the kids playing with friends on the playground structure. Engaged, they climbed up the brown ladder, their friends’ mother Renée watching them from the bench.
Everybody had probably seen everything, I surmised. I turned my attention to the EMT by my side. “I’m feeling better now. I don’t need to go to the hospital. I just want to go home.”
“Are you certain you’re okay?”
“Yes, I’m sure. Here, I can sign the papers for you,” I said, eager to get rid of the medics. I was embarrassed on the kids’ behalf—now their friends had seen their mother out of sorts—doing who knows what?
After I signed the paperwork and sent the EMTs on their way, my cellphone rang, and I saw Mark’s name flash across.
“Are you okay?” he asked when I picked up.
“LeeAnne called me and said you’d had a seizure.” Another schoolyard parent, LeeAnne had a son who played with Liam when they were younger. I knew LeeAnne tried to help but I felt self-conscious on the phone.
“Yeah, it happened here in the schoolyard. Somebody called the ambulance.”
“So, you’re okay?” Mark asked again.
“Yes, fine—really. Honestly, I’m not sure this seizure was any bigger than usual. I think staff felt they had to call 911, because I also had a seizure here at drop-off.”
“You sound okay,” he said, his voice tentative.
“I am,” I assured him. The sky had darkened with clouds. “It’s about to rain. We’re going straight home. I’ll be fine.” I gathered Liam and Amelia and skulked away from the schoolyard toward our house.
The children were subdued.
“That must have been scary,” I said. “I’m so sorry.”
“Yeah—I was playing on the tot lot, and then the ambulance was there,” Amelia said. “All my friends got scared and ran to the basketball court.” The court was behind the school, away from the playground area.
“Jeannie ran over when she saw you have the seizure and made LeeAnne call 911,” Liam added. The dreaded lunch aide Jeannie apparently groused as she served up food. Yet, she kicked into red alert and tried to help that day. Perhaps the kids would view her through a new lens.
“I’m really sorry,” I repeated. What else could I say? “I’m okay now, I promise,” which was true. The situation’s implications rattled me, but as we walked home, the post-seizure hazy phase had passed.
“And I’m going to take some steps to try to get these seizures to stop—I promise,” I told the children. Recalling Barry’s advice, I kept the statement vague. The surgery date was still over two weeks away.
“What steps?” Liam asked. Although I didn’t know for certain the seizures would stop, I borrowed a page from Mark’s optimistic playbook. I could vow that I was taking action steps.
“I’m going to the doctors at the end of the month. They’re going to try to help me. I think they can now.”
The kids took that in as we walked the last block home.
“Do you want to make popsicles?” I asked as we entered the house. I needed to redirect our attention to something more pleasant.
“Yeah!” Amelia took the bait. “Can we make them strawberry flavored?”
“Sure. Lemme text Dad, and then we’ll get started.”
Home now. About to make popsicles with kids. Feeling fine. I hit send and got to work blending frozen berries, ripe bananas, and yogurt in the food processor. I filled the silver popsicle holders with pink viscous goo while the kids threaded round metal tops with popsicle sticks and popped them on. The project served as the perfect distraction. Then my cellphone rang, the school’s number flashing across it. Uh oh.
“This is Laura,” I said, my voice as cool and collected as I could keep it.
“Laura, it’s Barry. I wanted to make sure you’re alright.”
“Yes, I’m fine. The kids and I are making popsicles. Mark will be home in about an hour,” I added.
“Good, I’m glad you’re okay. Listen, Principal Davis wants to meet with you. She’s concerned about the episodes at school today and wants to know what you intend to do.”
Barry’s words infuriated me. He knew full well what I was about to do—we’d discussed it that week.
“Did you tell her I’m having brain surgery at the end of this month?” I snapped at him.
“No, I didn’t disclose that. You can tell her when you meet with her if you want.”
We scheduled the meeting for Tuesday, and I fretted all weekend. The school’s staff had witnessed too much, and Mrs. Davis was concerned about the kids’ safety. Would she feel compelled to call outside authorities? It wasn’t the only time I’d had two seizures in one day around the children—just the first time it happened at their school.
At least the surgery date was in place. If the principal was having thoughts about calling child protective services, my scheduled temporal lobectomy provided a strong card to play.
The principal greeted Mark and me promptly on Tuesday morning, and shuttled us into the conference room, where the school nurse and the vice-principal joined us. Known entities sat at the table Principal Davis was friendly, personable, and generally well-liked amongst parents. In my experience, her second-in-command Ms. Baker was the hard-liner when it came to student discipline. I’d had the fewest dealings with Nurse Liz, but her kind, nurturing demeanor matched what I would expect from a pediatric nurse practitioner.
Mark and I sat on one side of the table, across from the others. Waiting for Principal Davis to lead the conversation, I twirled my hair nervously.
“Thank you both for coming in today. We’re glad to see you’re feeling better, but we’re concerned about the episodes you had at school on Friday. They looked significant. It seems like the children might be at risk when they happen. What’s your plan?”
What’s my plan? I was so outraged by her callous question I momentarily forgot the obvious answer.
“I could stay off your campus, but short of that, I can’t guarantee this won’t happen again. I don’t plan my seizures—they just happen.”
I looked at Nurse Liz and silently implored her to back me up with medical facts, which she did. Principal Davis acknowledged that banning me from the school was not a good option. Perhaps she wished she could, but we both knew that would be illegal.
“Actually, Laura is scheduled to have brain surgery, which will hopefully stop her seizures,” Mark piped up.
Oh right, there is a plan!
Relief swept over me as Mark steered the conversation away from my prickly response and toward the scheduled action step. Happy to let him take over, I sighed as all three of them turned their eyes on Mark.
“When is that happening?” Principal Davis asked.
“April 29–two weeks from today. Laura will be in the hospital about four days. We have friends and family helping us look after the kids that week. Full recovery will take about eight weeks, and there’s a really good chance she’ll have no—or at least fewer—seizures.”
Mark put the most positive spin possible on the surgery—something I couldn’t do. I relaxed a bit as I listened to the exchange. Clearly, the assurance was enough for the principal.
An active parent at the kids’ school, I volunteered in multiple capacities and attended my kids’ activities. Although after that day I never had another seizure at the school, I imagined some parents and teachers remembered the seizures and thought of me as the mom who has seizures.
I also wondered what biases administrative staff held about me. When Principal Davis retired about a year after my surgery, I joined the small goodbye gathering attended by many parents. Everybody bid her a happy farewell and asked would come next.
“Yeah, what’s your plan?” I called out from my cafeteria seat as I recalled that dreadful meeting. I didn’t care much about Mrs. Davis’s retirement activities. I was happy to see her leave, as that would be one less person who knew about my health condition. But it sure felt good to lob the line back in her face, although I doubt she caught my reference.