Taking Ownership

“I don’t believe you have epilepsy.”

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?”

“You 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.

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Fall 2017: Struggling so hard. Headed for a seizure.

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.

“I don’t?”

“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.

Waiting is the Worst

One more day of living out of a suitcase. One more day of not living in our own house. One more day of sharing one sink and one bathroom. One more day until I can UNPACK MY COFFEE MAKER.

Eric says I’m like the cats: if you move my stuff around too much it makes me weird. He’s right.

Real quick: what the hell was I thinking when I put my coffee maker in storage? Okay. We did think we were only going to be living in the temporary house for two weeks–which turned out to be a false assumption–but I seriously underestimated my need for brewed beans. Sure, I said, I can drink instant for a few weeks. Nope nope nope.

Also, why didn’t I realize until a few days ago that I could have just used a French Press while we were here? We have water. I am a moron.

I couldn’t sleep last night. Not that I’ve been sleeping that well in the temporary house anyway (shout out to my Uncle Tom, who I know loves to read about how tired I am…), but I can’t seem to settle even though we’re in our own bed. I hate ceiling fans, and I still miss ours like crazy. The temperature is wrong all the time. Too many things on my mind–a mix of excitement about moving in and fear that this really isn’t going to happen. Where I go, in the wee hours: Maybe I made up the whole house thing, and I’m going to find this all was some kind of mistake, rather than a multi-month, labor- and thought-intensive, expensive process that involved me signing my name on a stack of papers as thick as War and Peace. But then, we don’t have our old home anymore. In the middle of the night it seems possible that we could have left that house and we’d never get this new one and we’d be stuck in uncertain limbo. Cats, frozen between rearranged couches.

This move has to happen this weekend. It has to.

The kids are good. They’re so excited that I really do hope we get to move in. They need a win, at this point. The ins and outs of real estate escape them; all they know is we’ve been saying “not yet” a lot. I’m ready for them each to have their own rooms again and to have some free time to go outside and explore the creek and parks around the new house. I’m glad they get along, but we’ve all been spending too much time in each other’s bubbles.

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September birthday buds.

Last night for dinner, I cracked crab with two friends who’ve been in my life for 20+ years. It was so much fun. We drank beer and ate cupcakes and just didn’t do anything productive. As I drove home I realized there hasn’t been a lot of fun happening lately, and I really miss it. I’m such a nerdmobile, I almost cried. I was so happy (and tired, natch). Other than a few bright moments when relatives have rescued us, it’s been a long couple of months. In fact, pretty much since my surgery I’ve been holed up in the house or out getting shit done. Not a lot of hanging out or drinking beer with other humans. My body is finally — 4 months after surgery — feeling and acting like my body and finally not hurting. I am thinking it might be nice to join civilization again. Not jury duty civilization, or work civilization, or the driving-kids-back-and-forth-across town civilization, because that’s been happening. But fun. Maybe I could have a conversation with my husband that doesn’t involve a sewer line or a moving truck, and maybe I don’t need to feel guilty about taking two whole hours to eat dinner.

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Sweet baby Jesus, I can’t wait to have a real cup of coffee in my new kitchen.

Flaubert-isons

How do I really spend my time? You think I’d know, since I plan every variable (exercise, sleep, work hours, pages to read) like a madwoman. But I haven’t really thought about how it all shakes out into percentages. Last week sometime (in a post I can’t find now) I read someone’s goal for the new year was to keep the work/fun balance by trying for 8 hours sleep, 8 hours work, 8 hours leisure.

Sounds nice, right? I had no idea if I was anywhere close to that. And then this morning I saw this post from Colossal about famous creatives and how they spent each day. Of course I dropped everything to crack open an Excel sheet and color-code my own day. I didn’t have to even tell you that.

Verdict? Using the categories from the Colossal infographic, my day looks like this:

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My design skills are out of this world. I know.

On an average day, I spend 8 hours sleeping, 7 hours at my day job, 3.5 in “other” (which basically means driving kids somewhere, cleaning, or cooking a meal), 3 hours on food/leisure, 1.5 on creative work, and 1 on exercise.

If I’m sick (like this week) or have too much review work to do, I skip the gym and end up doing creative work from 4:30-6:00 AM, too.

So?

It reveals both my propensity for charting things and the fact that I do not have nearly enough hours in my day. It also reveals what I fundamentally feel, which is that I wish I had more yellow (leisure) and pink (creative) on my chart. I’ll be glad when I can scale back the green (day job) to do this. But I feel so pleased about my sleep habits. No single other thing I’ve done in the last year has made me more happy. Everything is easier with more sleep, harder with less. Kind of cool to lay it all out so I can compare it to, you know, Flaubert.

Hey, and [shameless plug!] speaking of making comparisons to authors, I have a piece up at Ploughshares today where I do just that. Here’s an excerpt:

I love art from other art. Ballets inspired by narratives. Garments influenced by architecture. Paintings that translate sound into color. Recognizable connections light up our synapses. We like things that remind us of other things, particularly if the connections are clever. (How else do you explain the popularity of “Weird Al” Yankovic?) Inspired work honors its source, but often it also begins a conversation. Many of the best literary examples don’t just use an original plot for a model, but reanimate the language of the older work to create something new. When an author uses work this way, the tension between two texts adds gravity to them both.

Read the rest…

Good Morning, 2015!

Let’s start writing up some resolutions so we can cross those bad boys off.

I’ve been thinking about goals this week. I have zero success with setting or keeping any real New Year’s resolutions. I tend to use New Year’s as my personal excuse to daydream. (Read: I usually try to write things down that are either so broad or so impossible, it won’t matter if I fail.) But I always find that whatever I accomplish in a year is influenced–at least a little–by the thoughts I had in January.

Is this how you do a resolution? Am I bad at resolutions, or good? Can you also please explain to me what is on the back side of belly buttons?

I digress.

I’ve been reading about how resolutions are better framed as habits we want to establish than finish lines. This speaks to me. I could say I’m going to publish a short story this year, America. But that’s really dependent on so much luck and right timing, no? It could happen, and I’d feel great for ten minutes, or it could not happen (likely!) and I’d have to walk around and feel like shit 365 days in a row because of something out of my control. What I could say is I’m going to spend at least one day a week sending out story submissions. That way I will have a shot at feeling like a champ (weekly!) even if I don’t win the publishing lottery. You know? I get 52 chances to feel like I win. And by sending all of those submissions I will have increased my chances. I will get to feel like the gold star student for just trying.

This is my wheelhouse, people: resolutions that are habits I want to get to rockin’. (And they’re not all about books. Don’t worry.)

Resolved:

  1. I will move my body through space at least three days out of the week. I will give myself permission to do shitty workouts because a shitty workout is always better than no workout. Whenever possible, I will exercise in the morning so I am free from thinking about it for the rest of the day.
  2. I will write letters frequently. With my hand. And mail them to other humans via the United States Postal Service. Related: I will buy stamps and keep them on me.
  3. I’ll maintain a system for tracking the books I’m pitching, reading, and reviewing. I will write things down in the same way and in the same places. Every time.
  4. I will cook as many meals as possible. I will enjoy the amazing cornucopia of produce that is California’s Central Valley. But I will also eat gummy bears and drink tequila because I like fun.
  5. I will read for work, for pleasure, to learn, to understand, and to become more like the people I admire. I am free to read terrible books with great enthusiasm and great books with terrible enthusiasm.
  6. I will give my time to people I love. I will give time generously to myself.
  7. I will get as close to 7-8 hours of sleep as possible. Every single night.
  8. I will my work done early and as quickly as possible. That way I can fritter away my free time without guilt.
  9. I will put money into savings each month for travel.
  10. I will get as much of the following into my life as I can: flannel, ICEEs, long runs in nature, cat feet, hugs, Sharpie gel highlighters, waves on my toes, cups of coffee, fancy stationery sets, lipsticks that make me feel like I have a role on The Good Wife, book reviews, naps in the sunbeam, badass mentors, drinking buddies, and braised meats.