In Which the Author Learns Something Surprising about Her Cerebellum (and Has a Very Weird Summer)

One day in late June, I woke up to a strong sensation of dizziness. Not “the room is spinning” dizziness; more a kind of “I am trapped on a terrible boat” dizziness. I was in Vermont by myself. I talked to my husband on the phone. “I hope this goes away by tomorrow,” I said, “because I’m not sure I should drive home while I’m feeling like this.”

When I woke up the next day, it was gone. Relieved, I drove home. Then, the day after that, the dizziness returned. When it didn’t let up, I went to my excellent doctor’s office, where they did a thousand kinds of lab work, then a thousand kinds of follow-up lab work, and determined that I was a really healthy person. There was nothing wrong with my heart, my blood sugar, my gut. I passed all the neurological tests. I was told it was likely an infection and would pass. Then, a day or two later, the dizziness went away again. Good, I thought, it was an infection! Onward, forward.

Then, a couple days later, the dizziness came back again, and from that point onward — two months ago today, in fact — it has never once gone away. I am always dizzy, every moment. Sometimes, like now, it’s mild, and I’m able to read, watch a screen, take a bus. At other times, reading, screens, and any movement whatsoever causes too much visual input and worsens the dizziness, and all I can do is listen to an audiobook while staring at the wall. Rarely, it’s so bad that I’ll be trapped for 18 hours (my record so far) in a sensation of severe dizziness that does not let up and does not let me sleep, eat, or do anything other than wait for it to end.

For the past week or so, it’s been kind to me. I’m living almost a normal life; it’s just that I’m always dizzy. I’m able to write this because my dizziness is being kind. I even handed a new book in to my agent a couple days ago!

But back to the mystery.

A few weeks into my unending dizziness, I contacted my doctor again. Concerned that I was still feeling dizzy, she brought me back in. Once again, I passed all the neurological tests. I could touch my fingers to my nose and keep my arms extended and walk up and down the corridors like a champ. Yes, my head was telling me that I was trapped on a terrible boat, but I was really quite unconfused while walking — which, in retrospect, is weird. That’s not how dizziness usually functions.

“I’m stumped,” she said. Then she set me up with an ENT appointment. This made a lot of sense to me, because not only was I dizzy, but my ears were popping all the time, sometimes they were ringing, and most of all, my noise sensitivity was off the charts. I’ve always been sensitive to noise. But lately, I could be in my office with the door closed and my husband could be three rooms away in the kitchen, opening the microwave and closing the refrigerator door, and I would need to put in earplugs, because his behavior was too loud. Which, in retrospect… is weird.

The soonest ENT appointment I could get was a month away. The dizziness was causing enough anxiety and disruption at this point that the wait was upsetting to me, but what could I do? Then, over the course of the next few days, my dizziness worsened, significantly. My doctor, who incidentally was messaging with me regularly, including on weekends, and is the most exceptional medical professional I’ve ever encountered, asked me to come in again. Once again, I marched up and down the corridors like a champ. I touched my nose, et cetera. My doctor told me that she was having a dilemma, because I kept passing all the neurological tests with flying colors, which meant that she could not justify a brain MRI to my health insurance company. But while I was there, she put a thousand more lab tests in motion.

By the next morning, all the lab tests results had come in, indicating that I was extremely healthy in even more ways than I’d previously thought. That morning, I drove myself somewhere to complete an errand. (This whole time, I’d been driving and it had been just fine. Again, the sensation in my head was telling me I was trapped on a boat, but my body was moving through the world just fine.) When I reached my destination and got out of the car, I was overwhelmed by the most severe dizziness I’d experienced so far. For an hour or so, I sat on a bench, crying and trying to get my shit together, determined to be independent and get myself home if it killed me. The thing is, it was such an awful sensation, like my head was full of horrible heavy cars spinning out of control. Finally, I called my husband and asked him to come collect me. He immediately ran out the door and jumped onto his bike, like the loving hero he’s been throughout this entire debacle. While I was waiting for him to reach me, it occurred to me that I was sitting on a bench very close to my doctor’s office. I called the office again. I said, “Want to try those neurological tests again? I bet I might be able to fail one of them right now.”

A few hours later, I was lying in an MRI machine. The next day, my husband and I met virtually with my doctor, who opened the radiologist’s report and told me that I had a brain condition called Chiari Malformation Type I, wherein my cerebellum, which is the lower back part of the brain, was being pulled down into my spinal column.

(Um, what?)

It was a non-dangerous condition I was probably born with, she told me. Most people with this condition go their whole lives never knowing; only a small fraction of people are symptomatic. I was one of the symptomatic people; I was dizzy because the cerebellum is the part of the brain that orients us in space, and my cerebellum was being squeezed. She told me that it’s a condition that can be corrected by a “procedure,” which even in my overwhelmed state I recognized as code for brain surgery. She also told me that she was thrilled by this diagnosis, which is when I understood how much my doctor had been worried about other, worse possibilities.

Well. That was a lot to adjust to.

What’s followed has been many medical appointments. More MRIs, which I’m grateful to find rather relaxing. The noises the machine makes are interesting to me. They almost always sound like the opening beat to some track a DJ is laying down at a nightclub, but then the song never starts. And, oh my goodness, the people at Mount Auburn Hospital MRI are so kind. The people at my doctor’s office are so kind, and dedicated, and skilled at getting my insurance to approve things. The neurologist sussed how anxious I was, and spent as much time comforting my anxiety as helping me with my cerebellum. The ENT I finally saw was extremely sympathetic about my situation and was also the first man who’s ever looked at my Nancy Drew sweatshirt and immediately understood what it meant. “I was a Hardy Boys reader myself,” he said. Um. Who told you the way to my heart? The neurosurgeon I met a couple weeks ago walked into the room and asked me if I was the author of the Graceling Realm books, then patiently answered about 25 detailed questions my sisters and husband had helped me to compile. He also told me that the neck, shoulder, arm, and hand pain I’ve been grappling with for decades was probably misdiagnosed. Those symptoms are classic Chiari, he said, which has been a lot to absorb. It’s been making me sad for my younger self, who did a lot of extreme stretching and massage that may actually have been making things worse. It’s also been making me sad for my poor squished cerebellum. I’m sorry, cerebellum!! You’ve been trying to tell me you’re not okay for decades!! I didn’t mean to ignore you!!

I’ve also had a few funny moments of revelation, or at any rate, I’ve decided to find them funny. For example, every doctor I’ve seen has asked me the same series of symptom questions, and there are a few symptoms to which I’ve always responded in the negative. “Do you have any light sensitivity?” “Nope,” I answer cheerfully. Then, about a week ago, as I went for a walk on an overcast day while wearing sunglasses and carrying an umbrella to protect myself from the terrible glaring clouds, it finally occurred to me that maybe, just maybe, I do have a little bit of light sensitivity. Maybe my decades-long certainty that the sun is trying to kill me could be reframed, and called “light sensitivity?” Here’s another one: “Do you consider yourself unsteady on your feet?” “Nope,” I answer cheerfully. Then, also about a week ago, I found myself thinking about that one a little. I went to my husband. “You know that question about whether I’m unsteady on my feet?” I asked him. “Yep,” he said. “Do you remember,” I said to him, “every time we’ve ever walked through any kind of woods together?” “Oh,” he said, in a voice of dawning revelation. “I see what you mean.” Because the truth is that on an uneven path or a steep path or a slippery path, I fall apart. I’m certain I’m going to fall; I often need help; I’m astonished by how steady everyone else is. I’ve always assumed I’m surrounded by a disproportionate sample of superior walkers. Not that I’m unsteady on my feet.

We haven’t scheduled the surgery yet. We have a bunch of scheduling complications in the coming weeks, plus, I’ve been advised to wait for a second opinion on the principle that if someone’s going to cut into your head, it never hurts to get a second opinion. But I do think this surgery is in my future. There’s a hole at the base of our skulls through which the spinal chord passes. The surgeon will widen that hole, so that my cerebellum has room to spread out. (I always imagine this making a happy “bloop” noise.) There’s a very good chance that this will alleviate my symptoms, but it’s not certain, so there are ways in which I’m grateful for this waiting time. Because I’m learning how to live with this, and proving to myself that I can. Activities like eating, working, resting, and getting around are more complicated than they used to be, but I’m figuring them out.

I’m learning a lot of things, actually. Even before this happened, I was wanting to slow down a bit, and this has forced me to slow down. Also, my whole life, symptoms like anxiety and nausea have been very tied up together in confusing ways, and at the beginning of the dizziness, this was a real problem, because, naturally, the dizziness was causing me anxiety, and sometimes it was also causing me nausea. And then the anxiety was causing me nausea. And then the nausea was causing me anxiety. And then the nausea and the anxiety were causing more dizziness. Etc., etc. – if you have anxiety, you know how the symptom escalation goes. But since my diagnosis, I’ve been forced to do that thing the meditation experts are always trying to teach us to do: Sit with my sensations and tease apart what is causing what. For example, I’ve had to learn the difference between the sensation of dizziness and the sensation of nausea, because (have I mentioned that this dizziness is weird?) often my dizziness will lie to me, and tell me that I’m nauseated when I’m not. The sensation inside my head will say to me, “We are trapped on a terrible boat, and we cannot possibly eat.” But in the meantime, my stomach is shouting, “Hellooooo! Everything is fine down here! Where’s my dinner?” I’ve had to learn that the best course of action in these moments is to eat my dinner, because I’m not actually nauseated — but I will be, if I don’t eat. Of course, the anxiety is more difficult to figure out and manage than any of the other symptoms. Anxiety is such a hard one. But I’m certainly getting some opportunities to work on it. Sometimes, when things get extra challenging, the learning accelerates. (I’ll merely add that my present ability to look at it in a positive light is a sign that I’m not currently anxious.)

Some housekeeping: If you’ve noticed that I’m not signing books at Harvard Book Store at the moment, this is why. If you’re among the group of people who ordered signed books and received bookplates instead of signatures in the actual book, I hope you weren’t too disappointed, and this is why. I could not get myself into the store to sign, due to my squished cerebellum. Please know that I signed those bookplates at my dining room table with even more gratitude and care than usual. If you’ve asked me a question on Twitter and I haven’t responded, this is why. I have limited reading capacity, and I can’t do much social media at the moment (plus, things have deteriorated so much on Twitter, and I haven’t had the wherewithal to figure out what to do about it yet).

Some gratitude: My husband. My doctors. My sisters and sister-in-law. My friends. There are no words. I promise I’m going to be fine. I’m also grateful to live in the Boston area. There are no doctors in the world to whom I would rather entrust my cerebellum. And of course, I’m grateful to have a diagnosable condition that doctors understand, is non-dangerous, and is correctable.

I’m going to be fine, and in fact, for the moment at least, I am fine. I will try to come back here with updates.

Now please excuse me while I go for a walk on a flat surface, while wearing sunglasses and protecting myself from the bright clouds with an umbrella.

Me wearing a blue sweatshirt with a detective shown in silhouette and the words "The Secret of the Old Clock, Carolyn Keene"