Book critic, teacher.
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…
Read the rest at Medium.
“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.
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.
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 against us. 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 and Rec 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.”
What.
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.
I hate my neurologist.
Of course, this isn’t a static emotion. What was first a panicky hate for his long list of changes has grown into an affectionate grumpiness for the smart man I wish hadn’t been right. Damn him.
In September and October of last year, I kept waking up to bite marks in my tongue. Bad ones, ever-worsening. Besides being confusing, they made teaching difficult. One day I woke up from a nap with my face covered in blood from a deep wound in the right side of my tongue. I didn’t wake up when I bit it. I felt like shit: heavy, weird, and confused. Every muscle ached. Fearing I’d had a seizure, I made some doctor’s appointments.
I was worried because there is something in my head. This isn’t a figure of speech. Midway through getting my MFA a few years ago, when my migraines increased, I had what seemed like a cursory MRI before I could be put on Topamax, a daily migraine medicine. During that MRI, the technician slid me out of the tube and asked me a bunch of questions that were too pointed to seem normal. Have you ever had an MRI before? No. Have you ever had any head trauma? No. Are you sure? Yes. Has anyone ever told you that you had any abnormalities in the left side of your head? No. And at that point, the technician told me she needed to push me back in and do the MRI all over again because she couldn’t be sure of what she saw. My Ativan had worn off. I couldn’t reach my ears through the head cage to get the earplugs back in. I lay there and I cried through the booms and clangs, in full panic attack. What was in my head? An arachnoid cyst, just behind my left ear. My general practitioner wasn’t great about helping me understand it. She sent me an email. She said they’d keep an eye out, wait to see if I had any neurological symptoms. And that was that, for a few years. So when I bit my tongue, when I suspected this might be a seizure, I was terrified.
I promise you, this is about coffee, too. I’m getting there.
My tongue-biting episode led me to the neurologist, which is where I should have gone after that first MRI. He asked me if I wanted to see the last few MRIs of my head. He showed me the surrounding, healthy, brain tissue. He told me I was probably born with the cyst because my brain had grown around it. He said that it couldn’t be causing either my migraines, or the episodes I was having now because of both where it’s located and how it hasn’t changed in several years.
See? I told you he’s smart. He’s kind and comforting, too. That made it hard to ignore him when he told me that I needed to give up caffeine and all OTC pain meds for two to three months if I wanted to make my headaches better.
“How often do you take over-the-counter pain medication?” he asked.
“Oh, I don’t know. Probably four days a week?”
“How much?”
That answer was too high.
“And how many cups of coffee a day?” he gestured to the cup in my hand.
“Oh, this? This is green tea.”
“Green tea has caffeine in it, too.”
“I know. But, uh. Just one cup of coffee a day.” His fingers fluttered across his keyboard.
Diagnosis: rebound headaches. People like me who have chronic migraines can get them from being too used to caffeine and over the counter pain meds.
Prescription: cut out all over the counter pain meds, any use of Imitrex (a migraine medicine I take when I get one), and all caffeine for two to three months. A “wash-out.” After the “wash-out,” I could return to these things, but in an irregular pattern. Caffeine was okay, as long as it wasn’t every day, and I had to do one week a month with zero caffeine. Pain meds no more than twice a week. The hope was that it would lessen my headache frequency.
“It’s going to be hard,” he said. “Your headaches are going to get worse before they get better.” No Tylenol, or Motrin, or Excedrin. Nothing. No coffee, or green tea, or black tea.
Cool.
He wasn’t wrong. The two weeks I cut caffeine were awful. I weaned myself with decaf (first three quarters caffeinated, then half, then one quarter, etc), then decaf for a few days, then nothing. Water and herbal tea only. It sucked. When I say “it sucked,” I mean that I had headaches and I was tired and I hated everyone and my body ached. And I wanted to murder my neurologist a little bit.
He also cautioned me that in order to stop the seizures, I needed to get at least eight hours of sleep, and I needed to “reduce my stress.”
Sure, Buddy.
This is my sixteenth year of teaching high school, but it feels like my first. We have all new curriculum–entirely new anthologies–as well as new novels at each grade. I teach two grade levels, which means I am teaching something new to me four times a day, every day. Not to mention learning one hundred and fifty personalities and trying to accommodate each soul as it needs to be taught. We also have an entirely new, entirely confounding computer database this year (and in the fall, I was a trainer for our staff), and the combination of new computer system and 180 days of new literature–times two grades–proved to be more than I could fit into my brain. By the second month of school, I wasn’t sleeping. I would wake up at 3:00 AM, worrying, and I’d think, well, that’s an extra hour of work I can get done. I’ll just get up and create a user guide for the computer system. I was borrowing sleep from both ends of the day, falling asleep late and getting up early. Usually I would wake sometime in the middle of the night to go to the bathroom and I’d lay awake trying to make lists of all the things I needed to do.
Sometime last fall, my friend Lizi sent me this podcast from NPR, with scientist Matthew Walker. It inspired me to start harassing my children by telling them that “sleep is the Swiss Army Knife of health.” I believe it, though. The podcast is wonderful, and I can also recommend his book. Cliff Notes version: if you ain’t sleeping, you gonna die, friend. I was putting myself at risk every day. The real science behind how much we need a real chunk of sleep is pretty scary, and my recent brush with nocturnal seizures is proof that I need to stop messing around.
Robbing my sleep was the worst thing I could do. I just didn’t know. I’m a morning person because I like the peace of a quiet house. I like the sunrise and the sound of the coffeemaker. But that means I need to be an early-to-bed person. I like knowing that I’ve given time to the most important task on my list so I won’t have to worry about it for the rest of the day. But I was taking so much time from sleep that my body was shutting down. My neurologist diagnosed me with nocturnal seizures. (Biggest contributing factors: sleep deprivation and stress). Since I left his office in November, I’ve been religious about sleep. I’ve set an alarm to get in bed (not to sleep, but getting in bed about an hour before I want to be asleep makes a huge difference). I try for eight hours, but I usually get about seven and a half. You know what’s happened since I started getting all that sleep? I haven’t been sick once.
Giving up coffee was emotional, in a surprising way. I didn’t realize how it was linked to writing and reading, entirely a part of my routine. I got past the caffeine withdrawal after a few weeks, but I never made it to a point where I didn’t miss the emotional pull. I gave up soda, too, but I couldn’t care less. But at 8.5 half weeks, when a bad day finally sent me over the edge and I gave up on this “wash-out,” it was because I needed a cup of coffee. For my feelings. This process has taught me both that I have a serious lack of vices, and that I am tied more to a daily cup of Joe that I thought. More than once as I tried to muscle through, I thought, maybe it’s just worth it to have headaches, because I really, really love coffee so much.
But of course my doctor was right. After the initial miserable pain, my headaches lessened. I still have them, but more more infrequently. Not being able to take even a Tylenol made me pay attention to headaches before I got them. Before, I’ll admit that I’d just get a headache, and then worry about it later. Now, I’m more likely to try to prevent one before it starts. I’ve found that a lot of my headaches are from bad posture: specifically, sitting badly in bad chairs. I sit to read or type for long periods of time. I need better neck pillows and desk chairs. My tension headaches often turn into migraines (I had three migraines during my “wash-out,” and I couldn’t take anything for them. That was fun.) An added side effect of cutting caffeine was that I slept better.
I found that without coffee, I ate more. I had less of a reason to get out of bed. (Who gets up for tea? Not me.) I realized I drink coffee when I’m bored, rather than eating. I also found that I had to be more honest with myself about how much caffeine I’d been consuming before. Sure, I only drank one cup of coffee when I was home, but if I was out, one “cup” meant a Venti black coffee, and usually a large iced tea somewhere else in the afternoon. Oh, and when I was stressed last fall? I’m sure I was also pounding down the Coke Zeroes. So if I really think about that answer I gave the doc? It wasn’t honest because I wasn’t telling myself the truth. No wonder I had headaches, and no wonder I couldn’t sleep. The other thing this taught me is that most people are completely stupid when it comes to how much caffeine they’re consuming. Decaf is not caffeine-free, dummies. Now I know that herbal tea is just gross water (I never really got on the herbal tea train, although I will say mint tea and chamomile are the least offensive of the herbal teas), and it’s not good, but most people are just downright ignorant about what they consume.
I made it 60 days without coffee or pain meds. I couldn’t do the full three months, but I’m still glad I did it, and I do feel like it had a positive effect on the number of headaches I’m having. For now I’m sticking to decaf for as long as I can, and I’m still not drinking coffee every single day. More importantly, I’m still trying to sleep close to eight hours, and I’m practicing saying no to the constant demands on my time. That’s the hardest part of all of this. It feels like my health is under control, but barely. I need practice.
I am happy as a clam, but I’m nowhere near as happy as Hurley, who has made it his personal mission to follow me around the new house. I suppose this isn’t too different from how he had to be near me in the old house, except the old house was so small that he didn’t have to get up. There are so many new dog places in the new digs. He’s been busy trying to never be more than two feet away from Mom.
The house is good. It doesn’t feel like ours yet, but I’m not complaining. I think this is due to two things: 1) it’s not in my head yet that we deserve something so nice. Yeah, I know that we are paying the mortgage, so I am not being completely ignorant about how it works to qualify for or pay a home loan. But space is so NICE. After you tell yourself for years that where you are and what you have is good enough, I think it just takes a while to adjust.
2) All of our stuff has a place to go. I have never experienced this in my married life, and since my married life is basically the history of my entire adult life, I have never experienced this in my entire adult life. No, all of our stuff is not here. But most of our regular day-to-day stuff is, and it fits in the cabinets. I can tell you that that was something I never imagined happening. Not because we had a crapload of stuff (I think we do okay, Marie Kondo-wise), but because the storage in our previous homes was just so teensy. Eric’s favorite room in the house is the giant pantry under the stairs, and I totally get it. When you can have your extra AppleJacks and your extra TP in the house, you are livin’ right. Thanks, Master’s degree!
Don’t go all OCD on me. Those TV wires are going in the wall, stat.
School is good. October is here and busy as ever with Homecomings and ordinary school doings, but that’s when I’m happiest. Everyone always has something to do, which means there’s less attention on everyone being new and having to prove how awesome they are. And if I manage my work (paper) load wisely, by October it doesn’t get so out of control that I need to take days off so I can grade. My kids (students) get it–well, I hope, at this point–they get me and they get what The Mrs. Partington show is and is not going to be. It’s routine time, and I thrive on routine time. The monkeys are wrapping up swimming (shh… I can’t wait for a break from sports!) and even though I pretty much hate fall, I am ready for some time inside my new house under 25 blankets.
I haven’t done anything extraordinary lately in terms of reviewing, but I do find that having an office feels like an extravagance. It’s a luxury to leave my stuff out on my desk and to know I can walk in and sit down in a quiet room whenever I need to read or write. I’d been having a rough stretch while we moved from house to house, and now that we’re settled I feel like myself. Reviewing comes with occasional waves of self-doubt and frustration, and I (fingers crossed) think I’m heading out of a bad one. It helps that I have been reading good books–I’ve been excited to work through them on the page. I hope now that I am back working every morning again and since I have a place to “go” to work I can also get back to some serious pitching and planning. It should surprise absolutely nobody that I work better when I have a place and a plan.
So that’s October. I just read Brené Brown’s Daring Greatly yesterday because I was having a bout of surgery-related pain (I know, still?) and I decided the cure was a long day in bed with a self-helpish book. I was inspired by everything Brown had to say, but particularly what she says about how we live in a culture that perpetuates the idea of scarcity. (I am not enough, I do not do enough, I’ll never be enough, I’ll never have enough… those tapes we play in our heads.) She says the antidote to the kind of misery and the shame that comes from that kind of thinking (the kind of thing that’s guaranteed to ruin any moment because we’re already thinking about how it can go wrong) is gratitude. Duh. But I mean, she’s right, and it didn’t hurt me to read it. (Brown’s TED talk is pretty good if you’re not the readin’ type.)
Anyhoo. I’m feeling thankful today, and I have so many reasons to be.
I’ve been a real peach this summer. A cranky brat. This, as most of my peevish moods, came out of a dumb assumption. For sure my hysterectomy was only going to put me down for a few weeks, right? That’s what I thought. Then everything would be normal summer awesomeness: bike rides, daily swims, short trips around the state.
Nope.
I have spent most of this summer building a wall of books around myself–I’ve read 14 books in six weeks–and reading so voraciously that something feels wrong about it. Reading has been a way to fill my time and avoid thinking too much about all the adventures I’m not having. Last year’s dizzy summer of travel is still fresh in my mind, while this summer I have done a whole lot of zero, and I’ve been angry. A pouty, unreasonable, frustrated anger. Let’s call this a tantrum.
Poor me. I know. This is nothing. It’s really nothing. But right now it’s my something.
Anyway, it’s getting better. I’ve had some days, in the past week or so, that count, and make me feel like I’m moving. Yeah, I’m thankful for all of my days and they’re a gift; the healing, boring days are just harder to appreciate. It’s a stagnant state of I’ll-be-happy-when, which is, frankly, shit. I don’t like waiting, and I don’t like it when I struggle to find joy in the moment.
In the past week I’ve had three really good days, three days that meant I could forget that waiting. First, a funeral for a friend’s mother. Not that funerals are any reason to celebrate, but it put things in perspective. It was sad, but it was so lovely. Such a positive remembrance of the way that one person affected so many people in her life and made each person who knew her feel special. That day was also filled with people I haven’t seen in a long time. It ended up being a reunion of sorts: the kind of day when you laugh and tell stories and don’t watch the clock.
Second: Tuesday I took a solo day trip to our family cabin. I dropped our kids off with their grandparents and drove another half hour to my happy place. I haven’t been there alone since I went to finish my thesis in 2013. I spent most of Tuesday staring at the water, reading, and dozing in my chair to the white noise of water on rocks. I feel whole there. If a place can be an antidepressant, this river is it.
Third: I had lunch today with some friends–all retired teachers from my school. It felt like being normal. It felt good to laugh. It felt like an actual reason to get out of the house, but not the kind of day that means being worked up. Today was ordinary, but joyful. And another reminder that the people in my life are so great. I also had a decision about work to make today, and the day ended with one of these glorious friends telling me that no matter what, everything is going to be okay.
It doesn’t get any better than that, if you’re wondering.
I’m beginning to feel like a person again, and less like a body whose sole purpose is to sit still and knit together. If I’m being honest, I’m still shaking my fist at the sky a little because I know I won’t feel 100% until the day I go back to work. This entire break will have been an exercise in patience. This was not a fun summer or even an interesting one. But tonight I’m thankful for a few days that really count.
Two weeks ago I had my uterus removed. LAVH, which means I had small incisions by my hips and navel, the doctor filled my belly with gas and poked around with tubey cameras to make incisions, then removed my uterus, fallopian tubes, and cervix through an incision in the birth canal.
At least, that’s about as much of it as I can stand to Google. It grosses me out to think about the last part, and while I’m all for knowing what’s happening to my body, I’ve been unable to calm the queasiness that comes every time I read the details of this operation. Since I had both my kids via c section, the idea of delivering my uterus strikes me as ironic. Or odd, at least.
What I’m not feeling right now is any kind of sadness about my uterus being gone. I’d read a lot about women who didn’t feel as feminine because they lost that part of themselves. I didn’t know if I’d feel that after it was gone. Not so far. But I never liked my uterus. It’s been a shitty relationship for 23 years, and even when it gave me those two amazing children, it was still a huge, uncomfortable and awkward pain. I never had easy periods or pregnancies, so I can’t say I feel a sense of loss about that part of my body. I am sure when I’m not having to miss work or spend days in bed every month I’ll be even more glad. Adios.
I do feel a loss of possibility, even though the rational part of me knows that the possibility was already gone, since several years ago Eric and I decided we were done having kids. We figured out that we didn’t need new babies, just missed was our two as little ones. No amount of hanging on, martyring myself with a busted, miserable uterus was going to make that possible. Right now the worries I have about the space where my uterus was are about complications in the future. In a fit of pain and sleeplessness the other night, I started Googling what can go wrong after a hysterectomy, and that was a bad, bad idea. It will take a while for me to forget some of those words.
If I’m honest, my overwhelming feeling right now is fear of aging. Fear of living in a body that’s declining in performance rather than one that bursts with possibility. My hysterectomy underscored my mortality. And while I don’t feel old, or bad, or sad, I know I’m constantly checking my watch at the party. This is fun, but I know someday it will end. Have you read Sharon Olds’ poem, “35/10”? At our house it’s 36/12, but the sentiment is the same. Time is passing, man.
So. Recovery. It’s going, but it’s going so much slower than I had hoped. So here are some details (none of them more disgusting than anything you’ve already read, if you’re still with me). AKA: What I wish someone had told me about LAVH.
I was in and out of the hospital in one day–checked in at about 6:30 and home before 3:00. My doctor told me the requirement to leave and go home sans catheter was that I had to pee on my own, so I spent one very drowsy and determined half hour in the bathroom immediately after surgery. Once I proved myself, I was released and I was home in my bed. Not to be outdone, Henry came up with a sudden case of the stomach flu at school that day, so I didn’t see the kids a lot until we were sure I wouldn’t catch whatever thing he had.
One of the doctors told me I’d be nauseous when I got home, and they gave me multiple meds to combat it. What I didn’t do was read the side effects of the pain or nausea pills they gave me. If I would have, I would have known that they caused blurry vision and dizziness. Maybe I wouldn’t have fallen down on my way back to bed from the bathroom that night, hitting my head on the door frame and cutting my cheek on the dresser. Two days later I also discovered that the splitting headache I had was from the same medicine. I felt a lot better once I was off that and the Norco.
The worst pain for the first five days–and it was awful–was from the gas they used to inflate my abdomen so they could see with the cameras. I know, you’re like haha gas. Not that kind of gas, because that kind of gas lives in your digestive tract and no matter how bad it is on a scale of one to fire sauce burrito, you know it’s going to eventually exit. Not this gas. This gas is just in the space outside your organs, and it can’t leave. Every time you move, it makes you want to die. Stabbing, shooting pain in your shoulders. Roiling bubbles across your guts. Pressure and discomfort like you wouldn’t believe. My doctor told me my shoulders would hurt (“don’t call us if you have shoulder pain,” she said), but this was so bad and so painful that I am still having trouble finding the words to describe it. In the first week my incision felt fine and I wasn’t really moving around so gravity had yet to have her way with me, but the gas? GOD DAMN, YOU GUYS. I’m just keeping it real. I wished I could cut a hole in my side to let it out.
It took me four days to leave my bed and get to my couch. It took me a week and a half to feel strong enough to walk past my mailbox. I just started driving again yesterday. I feel good and stronger every day, but I feel sore and tired. Gravity doesn’t help, especially the area surrounding the internal incisions. My ex-cervix. The longer I stand, the more unbearable that feels, but the pain seems to migrate to different areas of my stomach, depending on the day. My ab muscles feel weak and I am sure this contributes to not feeling like I can stand up for a long period of time. I miss being strong, feeling like my body can move with a semblance of agility and fortitude. I feel stupid fragile.
Before the surgery I told myself this would be no big deal because I’d had two caesarians and I knew what that was and that I could do that, not sleep, feed a baby and still manage to move around. I have not been handling this as well as the caesarians, and either this means a) I am a weak soul, a shivering baby bird of a person, or b) it’s just different. I am trying to convince myself that it’s b. Am I glad I did it? Not today. Today I feel pissed off that I’m wasting my summer, and angry that I can’t really leave the house for any period of time that amounts to anything. It’s been hard to ask for what I need constantly, and hard to rely on other people for so long. I think I’ll eventually be glad I did this, but I’m not there yet.
I have eaten the full gamut of Things Heather Loves, from peanut butter M&Ms to Cheetos to ICEEs to gummy bears and two kinds of Oreos. I am glad I lost 18 pounds before surgery, because post-op, I wanted comfort foods, and my comfort foods skew decidedly lowbrow and high sugar. Eric has been so good to me, taking care of every single thing I needed. My friend Kitty stopped by with something for me every day, sat with me and talked so I’d feel like a real person. My sister scooped my kids up and delivered dinners without making me ask for anything at all. My parents, my grandparents, everyone has sent food and love and hugs. My room looked like a florist’s shop. It is good to be loved and cared for. It’s only hard to be a patient patient.
Henry said I’m different since my surgery. When I asked him how, he said “well, when the doctors removed the part of your body where a baby grows, I think they also took out the part of you that makes you embarrassed to talk about poop.”
So there you go, Internet.
Here are some pictures of what I’ve been up to. Spoiler alert: not much.
HSP 