2018 found me aphasic, trying to read, write, and pretend I was fine while my language skills unraveled. This was a side effect of the drug, Topamax, prescribed to me for migraines and epilepsy. I lost nouns, verbs, and names. Not great for a critic. I spent most of the year stymied and confused. Aphasia is a beautiful word, isn’t it? It’s also called Dysnomia; the language of losing language is cruelly euphonic…
I was afraid to look too excited at what the neurologist said, afraid to want something so much that I’d make it happen. I pushed the heels of my hands down into the vinyl seat of the chair. I looked at the oatmealy floor. “I don’t?”
A year ago, I took ownership of epilepsy. That word. My diagnosis didn’t change my reality, but it sure as hell changed my feelings. It changed my routine. More sleep, no booze, less stress. It changed my future. This was my new life.
Two months ago, I stepped out of a Sprouts market and into the sun. I’d only been inside for five minutes to use the restroom. I stalled on the sidewalk, blank. I had no earthly idea where I’d parked my car. It didn’t take long for fear to settle into the spot where a simple memory of my parking spot should have been. Did I park on the right? The left? How far back? Was I even parked in the lot? I was scared. How could I not hold a thought for five minutes? If I stood there, would it come to me? It did not.
Three months ago, I sat down at a table under the redwood in our yard to review a novel for Kirkus. I’d read the book. I’d made notes. I had opinions. I’ve written countless reviews. Pull quotes from the text. Fight through frustration. Explore. But that day, language failed me. Every tenth or so word felt like it was behind a cloud, inaccessible. I just couldn’t remember them. Not complicated words. Words like ordinary. Words like compare. Words like implication. Being unable to conjure your own language is terrifying.
A year ago, I woke up from a nap with my face covered in blood. My tongue was split on the side where I’d mashed it between my molars. I felt misery, head to toe. Stiffness, a cold dread. I submitted myself for prodding and scanning: EEG. MRI. Neurology. Referral. After that seizure and a series of subsequent episodes where I bit my tongue in my sleep, my doctor prescribed Topamax to address my dual brain issues: epilepsy and chronic migraines. Topamax is no joke. It requires gentle ramping up; it makes the patient lose weight, and it affects cognition more than a little. Soon after beginning the drug, I was plodding around, dazed. I was tired all the time. My thoughts were unclear. My doctor assured me that the fogginess would settle.
It didn’t settle.
First to go were names. I would be telling a story, and I’d forget the name of a coworker I’ve worked with for over ten years, someone I talked to daily. Was I good at covering and laughing it off? I didn’t want to think about that for too long. I developed tricks to mask my blank memory. “Tell me your last name?” I would say as a student of six months came up to ask me about her grade. I relied too heavily on the class seating chart. Thankfully, none of my students called me out. My friends kindly ignored my pauses. After names, I lost chunks of text. Stories I knew and had taught for years disappeared from my mind. When my students would ask about something they read in the chapter the night before, I’d say “show me where in the chapter that is?” and hope (again) the moment would pass. I struggled to pull my thoughts together about a book. My ability to connect anything was gone.
Topamax affects speech and memory in the brain. Aphasia–difficulty with speech and language–is just one of its side effects. So are memory loss and confusion. After months of Topamax, I was “losing farther, losing faster…” like some fucked up “One Art.” I tried to write that review for two hours in our backyard, then I went to find my husband. “I can’t write,” I said, feeling the prick of tears in the corners of my eyes. “Not like I don’t want to, or I don’t know what I want to say. I can’t find my words. I can’t get to them.”
I was sad and confused. I tried to continue with both of my jobs: teaching English to reluctant high schoolers all day, reviewing books in the wee hours of every morning. But I couldn’t concentrate–not on my own narrative or any story. I define myself entirely in terms of comfort with language. Everything I do involves words. The phrases we own and the stories we remember become our personalities. I’m wary, when I write, of my syntactical habits; I’m suspicious of what writes easy. But I know I have to write to survive. Both of my jobs require fluency, ownership, and memory. I love to find patterns, to connect disparate ideas. What does a novel mean? How can I capture the diction of a passage? Does this book do what it sets out to do? How do we access the world it describes? What questions does it ask? Topamax blurred those thoughts. Every page I read was separate. Each sentence, its own thing. Teaching was exhausting. Reading and writing were near to impossible because the Topamax moved into my head.
People in epilepsy forums call it “Dopamax.”
Two months ago, after losing my car, I told my neurologist I wanted to wean off of the drug. I wasn’t living if I couldn’t write or speak. “I’m done. I can’t take this anymore,” I told him. He gave me instructions to stop taking the drug. But to my horror and surprise, he also told me flatly that if I stopped, I was at risk of dying suddenly in my sleep. People with nocturnal seizures are at risk for SUDEP: sudden unexplained death in epilepsy, he said. Off the drugs, the risk increases. At no point in the last year did he bring up SUDEP; it only came up now as a threat to make me take the medication. My feelings about sleep became complicated, which isn’t good for someone trying to avoid nocturnal seizures. I did a lot of crying. I took Topamax for two more weeks, but I didn’t feel like myself. I talked to my husband and finally decided that fear of dying was keeping me from living. I weaned myself.
Off the Topamax, things brightened. I found words. Clarity returned to my brain like blood through a sleeping limb. It was time for a second opinion.
This Thursday, I sat in an office at a local epilepsy center. I recounted my story to a different neurologist who specializes in epilepsy and seizures. He’d already reviewed my record. He listened patiently for a half hour as I gave him dates and symptoms, my story of observations and lists. He asked specific questions about each episode where I’d bitten my tongue. He agreed that my initial episode was a seizure, caused by sleep deprivation and stress. But he had a different opinion than my original neurologist about my subsequent episodes of tongue-biting.
“I don’t believe you have epilepsy,” this new neurologist said.
A year of Topamax. A year of fog, and panic, disordered memory. A year of teetotaling. A year of consternation. Laconic speech. Panic about death in my sleep.
“You don’t. I believe you had one seizure, but the rest of these ‘episodes’ aren’t actually seizures. I think you damaged your tongue during your seizure, and now it’s sensitive. I think the biting is caused by your tongue resting between your teeth. We know your seizure’s cause–sleep deprivation–and if you haven’t had another one, you don’t have epilepsy.”
I don’t have it. That word. Now I’m hoping to take the rest of them back.
It took me 16 years to stop being afraid of my students on the first day of school. 17, if you count my year of student teaching when I showed up to observe other teachers and got tossed into a classroom to sub. Not that I knew what I was doing that first year–that year it seems fair that I quivered in my bad JC Penney pantsuit and stumbled through another teacher’s activities with five classes of kids who were only a few years younger than me.
This is the kind of thing you don’t admit out loud, the being nervous. Or, I guess I don’t hear teachers say it, which is why I’m writing it. Last year I finally came to grips with both the fact that I’ve always been nervous on the first day, and the fact that I was finally not. I know plenty of teachers who say they’ve never been nervous, that they don’t care. These are normal people with human emotions (read: not psychopaths), so I’ve been thinking about why that’s the accepted posture. I definitely don’t think it helps new teachers.
Teaching is weird. It’s you, but it’s also not you. I’ve always understood my teaching self as a character and my class as an act. I have referred to my job for years as The Mrs. Partington Show, and that’s not as much of a joke as it seems. The Mrs. Partington in my classroom is me, but she’s me if I carefully selected all the parts of me that were appropriate for teenage interaction and parent scrutiny; she’s the nice me, the patient me. She’s the me that wants to hear about your freshman football game and will joke with you about Fortnite. The me who wants to spend a lot of time talking about data or how someone is not a great test-taker. That is not me, friends. She is not the me who gets down with an episode of Dr. Quinn on a Thursday night or the me who hides in a hammock for the whole summer with Tristram Shandy. The part of that that’s hardest to reconcile is the human self that stands in front of those kids and that views the emails from the parents–she gets hurt when real conflict happens. The character doesn’t shield the real me.
That’s what I used to be so nervous about on the first day. The whole will they like me? thing. I care. Again, there are so many teachers in my life who deny any attachment to likeability, but I feel like there was at least a kernel of that at one time that inspired them to go into the profession. To say it another way–maybe they respected a teacher so much that they really learned well, and they wanted to have the same relationship with kids. And what’s wrong with being likable? I like students. I don’t think it makes me a strange person to admit that likeability plays a role in education.
I wish there was a magic phrase that helped me stop being nervous last year. I heard so many pieces of advice from veteran teachers that I tried to implement for my first decade and a half. Most consistently, the one about not being able to get meaner as the year goes on. While true, the problem with that for me was that I’m not a harsh disciplinarian, either. Frankly, a lot of things just don’t bother me. I tried starting my year off as a drill sergeant, and it didn’t last–it was as inauthentic as any other time I tried to do someone else’s shtick. The surest way to fail as a teacher is to try to recreate someone else’s thing. I had to figure out how to do this as me.
What finally clicked in year 16–which is late for such realizations, but here we are–was that if I paid less attention to myself, and I focused more on recognizable student behaviors, my job became more about gently correcting course a thousand times a day rather than putting on a show that was so fabulous it would hold everyone’s attention for 5 hours. What I know now is that students act the exact same way every single year at every point in the year. There is nothing new under the sun. I can nail it down almost to the day–when a kid will blurt out a joke to make the class laugh as I’m trying to teach. When someone will draw a penis on one of the desks. When a girl will burst through the door crying because her crush broke her heart. When they will leave a mountain of trash under their desks or destroy one of my books. And in the midst of all of this comes waves of different feelings toward their teachers–anxiety, then suspicion, then rebellion (this one lasts a while), and then a long stretch of comfortable learning, joking and testing the waters of adult conversation. Somewhere in there, we read and write.
This year, year 17, I overslept on the first day of school. I could blame it on the medication I’m taking or the fact that we had three days of soul-crushing meetings just before, but I’m sure it’s because I wasn’t nervous. The first day brought plenty of other challenges–large class sizes and enrollment issues, especially, but I spent most of the day being amused by my students. I enjoyed getting to know them, and I enjoyed the pressure being off. Everything was new, and everything was exactly as it has been for the last 16 years.
I read something about meditation long ago–that you’re not supposed to punish yourself for letting your thoughts drift. That it’s better just to note your thoughts and gently direct them back toward your breath. To just breathe. My role in the classroom is the same. Redirection.
Someone told me once that the best thing you can tell your spouse is often “that sucks”–as in, don’t try to fix things when they’re upset. Don’t try to tell them what to do. Just listen and say, “that sucks.” Because what most people want is to be heard, the feeling that someone else cares about the hard things that happen to you. More often than not it’s what I want: just acknowledgement. Saying “I know exactly how you feel” is untrue. Telling me what to do is awful. And you can forget about “just relax” or “it’s fine.” Well. I am lying about one thing. It wasn’t a person, it was an episode of NBC’s Parks and Recreation, but it still changed our marriage. “That sucks” is often just right.
Three months ago, I went back to church. Do you see how I buried that in the second paragraph? It’s hard to write about. A little embarrassing. Church sure has a lot of different connotations, doesn’t it? I feel you forming an opinion. I have an opinion, too, because it’s been almost 20 years. Church is a loaded word, conjuring either a closed mind, or too much liberty with the word of God, depending on which peanut butter you buy in 2018. And my tendency is usually to hem in whatever bits of myself might be most interesting or bold so I don’t offend. But that’s exhausting. At almost 40 I just want to be. Like RuPaul says, “what other people think about me is none of my damn business.” In the last year our cruel president’s policies and my health issues have clarified my sense of self. Remaining silent or immobile is a privilege I don’t want. But I don’t want to do good alone, either. I want to work within in a body that does good for others in the community and the world. I finally realized that the place I’d grown up, a small congregation of the United Methodist Church with its policy of inclusion and a history of serving vulnerable populations–was it.
As a kid, I liked any part of the church service that was said in unison. Sometimes I’d close my eyes and speak along with the prayers that hummed around my head, while the light warmed my ear from the stained glass windows. Often, though, I’d snuggle into my grandma’s side, bow my head and run my finger along the sewn-in seam on the knee of her polyester pants while we prayed. I loved the sounds of the Lord’s prayer. Especially: Forgive us our trespasses, as we forgive those who trespass againstus. All those good S-es that the debt/debtor people miss. I struggled, then, to think of any trespasses against me. I always had a list of my own.
My church wasn’t cool, but it was earnest. I stopped attending around my late teens–not because I gave up on religion, but because I looked down my nose on my church’s simple and steady routines; they didn’t seem like enough. Please stand for the reading of the Gospel. You may be seated. Let us pray. The creaky pews, the casseroles, the basement fellowship time. Puppets. Choir robes. Powdered lemonade. I wore my Methodism–which comes to me by both sides of my family tree–like a scratchy hand-me-down sweater. I shed it the first chance I got: I was attracted to my friends’ sparkling mega-churches—where people raised their hands in worship and sang the refrains of songs over and over with their eyes closed. These churches had rock bands and LCD screens, dark lights, and altar calls. We were married by a dear pastor in one of those big churches when I was 20. I felt happy there, but when I look back I wonder at the spectacle. It seems like some churches are designed to draw people in to entertain them with the show rather than to inspire service to the community at large. (What rock concert would Jesus attend?) Where I settled, there was so much emphasis on judgment–never from the pastor, mind you. But I can’t avoid the memory of so many prayers for friends in our circle who had “fallen away,” so many whispers about other people’s sin. And so much daily, constant anxiety about my own. It was easy for me to get lost. That wasn’t the case where I grew up, and yet it was the world I found myself absorbed into by my late teens. In 2000, around the time I was married, a group came to a church service to speak about Prop 22, a precursor to California’s Prop 8 Marriage Initiative. I was hardly woke, then, by any standard, and it still felt wrong. Really wrong. I didn’t feel like my heterosexual relationship was in danger if my gay friends could get married. I was disgusted by how people acted in the name of God. Soon I gave up and stopped attending.
For almost the same time that I’ve been avoiding church, I’ve been teaching public high school. In some ways, that was easier. There are strict restrictions about what I can say and what I am allowed to teach. I could never–and would never–espouse a particular political or religious view as the only view in a lesson, and yet my entire job is interpretation. When my job as a critic is quite literally to have opinions, it’s a strange dichotomy. So in the interim, it has worked to believe, quietly, in God. I am positive that I believe in God in such a different way from most people, anyway, and for a time, I felt like that might be wrong. In 2014, I reviewed Sara Miles’ City of God for The Los Angeles Review of Books. Miles, a Director of Ministry at a congregation in San Francisco’s Mission District, writes in her memoir about taking ashes out into the Mission on Ash Wednesday. “God so seldom means just one thing to any individual, much less the same one thing at a time to a whole group,” she writes, “and so worship spills out every place God meets people.” This idea and Miles’ account of faith interacting with the vibrant city spoke to me, so much that on a solo trip to San Francisco, I visited St. Gregory of Nyssa Episcopal Church. I just wanted to see it.
I’m not sure why that detail should be important to you. I’m not sure about Mr. Rogers, either, except I want to tell you that I saw Won’t You Be My Neighbor the other day, and I sat alone in a theater, crying a little bit as I watched him tell college kids that they were valuable just because they are, thinking about what a bold idea it is to be loving. Thinking about how many of my students need warmth. “Love is at the root at everything,” he said, “all learning, all relationships, love or the lack of it.” It’s the same feeling I had when I watched Nanette, the groundbreaking Hannah Gadsby comedy special on Netflix, last week. It doesn’t matter why we choose a different kind of story. It’s risky, right? To be open to all people? To believe them when they tell you who they are? Our patterns of storytelling are built around heroes and victories. Power. Mistrust. On a national level, we’ve decided right now that we are going to be in this moment where winning matters. Where having matters. Where everyone is a liar. Going to church right now, being a part of a community, listening, serving others, speaking out, choosing love–these feel like acts of defiance–especially with a group that dedicates itself to serving vulnerable populations.
I’m not even sure if I’m conveying this properly.
I walked into church again on April 15th of this year because I’d just finished a book about recovery by an author who felt like she was too smart for AA’s scripts and clichés. In reviewing the book, I had to examine my own biases–I found that the author’s disdain for the rituals of AA grated against a part of me that felt comfort in repetition, in belief, and in gathering together with others who will listen, or in being someone who says yes, I will be here for you. But also, I read an echo of the pride that made me leave my home church almost 20 years ago. I decided to finally push past my embarrassment about not having gone for two decades and just go. Last Sunday, I sat next to a woman about my age. During the sermon, the pastor asked each of us to think of a time when we had felt most alone in the world. Then he asked us to turn to the person next to us and share. (Church comes with more interaction, now, I guess.) I won’t tell you what the woman shared, but it was painful. I thought about that advice from Parks andRec as I listened to this stranger who was incredibly vulnerable. As she spoke through her tears, I tried to offer a more eloquent version of “that sucks.” I shared something in return. We stumbled through a conversation, but it had value. 2018 often makes me feel like I need being human classes. Church feels like my way to reach out rather than to reject, right now. A way to acknowledge the humanity of the people around me. Earnest connection, which is something.
I have Epilepsy, and I feel a little weird about it.
You will remember that I had a rough autumn of bad health: headaches and insomnia and tongue-biting in my sleep. I felt like I couldn’t control my stress, and I was on the verge of tears all the time. My doctor thought I might be having nocturnal seizures, but he didn’t know for sure. My EEG was inconclusive, even though I bit my tongue in the middle of it. He gave me a long list of things to do to improve my health, and that was overwhelming and hard. Many of those things were for the migraines, and a few were for the seizures: cut out all caffeine, make sleep your new religion, cut the stress. Plus the old medical standard: wait and see.
I started taking Topamax to treat both problems: the chronic migraines I’ve had since my twenties, and the [maybe] seizures. If I stopped biting my tongue, that would tell us something. Well, I stopped biting my tongue. I started feeling way better. It’s amazing how groovy you can feel when you’re not biting your tongue all the time. About three months into the meds, I had another appointment with my neurologist, and he said that we could assume it was seizures, and I should stay with the meds.
Then as is always the case in the spring, I started having discussions at work about next year’s teaching schedule. Immediately, my stress level was through the roof. My health was better, but barely. Worrying about it getting bad again was going to make it bad. I tried to be honest about my health issues and take things off my own plate, but I struggled to say no because I’m a wimp. I felt like I should have a doctor’s note on file so it would be clear that I wasn’t making this stress/seizure stuff up. It’s hard to explain something that you can’t see. It felt like dumb excuses. I asked my neurologist for a letter that explained my condition. I didn’t know how to convey what it was, anyway. Did it have a name? Was there something more specific than nocturnal seizures? Could he put it down on paper in a way that would make sense so people wouldn’t have to Google what was wrong with me?
He did. It took about a month, but he finally sent me a letter, which said, “Heather has nocturnal seizures caused by Epilepsy.”
The funny thing is that I wanted the letter so nobody else would have to Google anything about me. But the letter sent me Googling. What the Google Machine told me is that Epilepsy is what they call repeated seizures without a known cause. So: me. I think my neurologist didn’t use the word at first because we didn’t know, and then he was just being more specific, referring to the specific type of seizures.
This is what I tell myself, anyway. Because he just hadn’t used that word at any time before.
But I feel better than I’ve felt in a long time. For at least the last 15-20 years, I had a terrible daily headache, and I woke up every night in the middle of the night with anxiety and insomnia. That’s not happening, anymore. I still get headaches, but they’re rare, and they usually have a specific cause. I’m still sad I’ve had to cut so many things out of my life–don’t get me wrong. I’m pretty much off caffeine, soda is gone, and I haven’t had a drink since October. I don’t take OTC pain meds more than twice a week. But I’m at a point where decaf tastes like real coffee, and the amount of uninterrupted sleep I get has made a notable difference in my energy, anxiety and migraines. The meds help, but I think that all the lifestyle changes were huge. Damn it.
And I’m not having seizures. To my knowledge, I’ve only had two since October. One, about a week after I started on the meds, and another a few weeks ago. Both times, I was up way too late, and I was unusually stressed. That tells me that what I’ve been doing is working. Sure, it stinks to leave our friends’ houses early, or to go upstairs when my whole family is still hanging out, but I’m better.
Not having seizures all the time is great. I can recommend it.
What we call things doesn’t give them any more power than they have on their own. I know this. As Eric says, nothing is different in my body now that I have that letter. And yet: feelings.