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First published on the now-defunct health site Folks, 9 September 2020.

 

 

         Unlike most people with a serious chronic illness, I can pinpoint a date on which everything started to fail for me: April 25, 2012. That was the day on which I lost language for a while, and a part of myself forever. And I learned how important telling a story can be, like a light in the wilderness. In my case, it was a story about a mermaid, and she saved my brain and maybe my life.

         On that day, my next-door neighbor’s neglected dog jumped his electric fence and chased me down as I took out my trash. She knocked me to the ground, my head hit a concrete step, and I’m not too sure about what happened next.

         Concussions are not like the movies, where a blow to the head knocks James Bond out and he gets up and starts running after the bad guys. But I tried as hard as I could to make that come true, in my job as a university professor. I had difficulty reading and writing; words looked like peculiar foreign objects, but it was my business to use them. My speech was slurred and I had trouble coming up with the words I wanted. I wanted nothing more than to sleep, but I managed only an hour or two a night.

           Nonetheless, I felt I had to finish out the school year. I strapped an ice pack under a hat and I put on huge sunglasses, and I led discussions of folklore and modern literature. Honestly, I don’t remember much of the year that followed; it’s a time lost to memory, except for a few very unpleasant things. Such as the discovery that the state of Virginia does not hold a dog owner liable for an attack if the victim knew the dog could get out. And the harassment from that neighbor when I reported the incident to Animal Control; although he wasn’t paying a cent for my medical bills or any amount of suffering, he was mad at me for being injured, and he made loud noises and yelled at me in drunken rages until eventually I moved—at the same time as he did.

         The good part of the move was that Greg and I bought a house together and got married on the front porch, during a supernova migraine that meant I don’t remember the day. I’m told I had a good time.

         In some ways, I know I must have seemed to be high functioning. I did manage to get myself to class, after all, and I published a book in 2013—The Kingdom of Little Wounds, a novel—that went on to win several national awards. But I’d written that book before the concussion, and I despaired of ever writing again.

         I had a migraine for over seven years. I mean not just a headache but a migraine, with ocular disturbances, blind spots, extreme sensitivity to noise and light, vomiting … but I kept working. I had to. In the academic field, taking time away often means saying good-bye to your career; jobs are scarce and switching is nearly impossible. Also, I was told I was needed, that only I could teach my classes. 

           In the spring of 2017, my symptoms changed. I started fainting, especially when sounds came from more than one source. Two people talking at once—I was down on the floor and very far away. Soon it changed again. Loud sounds, flashes of light, multiple stimuli at the same moment, and I was not just down on the floor, I was convulsing. My body curled in on itself and made a big, tight knot of confusion and pain. I was scanned for strokes and epilepsy several times—“Good news,” the doctor would say, “that isn’t it.” But I was always a little disappointed; everyone knew what epilepsy was, and I had a sense that people thought I was exaggerating my problems. Then my supervisor told me my seizures were upsetting to the students, and I was sent home for the rest of the semester.

           We were getting desperate for help. I spent thirteen thousand dollars going to a clinic out of state where a series of exercises both mental and physical made my brain worse, not better. I walked with difficulty; Greg had to help me get around the house. In the fall, on sick leave, I started seeing a team of doctors who specialize in head injuries. After nearly a year of new tests and medications and promises still to get to the bottom of my problem, the lead doctor told me they were through. And stumped. 

          “It’s not just the concussion,” he said, “because concussions either heal or stay the same. It’s something else.” He wished me luck, and that was the end of that.

         All this time, the worst symptom of all was losing language. I could live without doing math in my head anymore (sadly), but my problems with language weren’t clearing up. Especially in the midst of a very bad migraine, I spoke and wrote words out of order. I knew they were wrong, but I didn’t know why. I misspelled. I began one sentence and ended it as another, and again I didn’t know why. I couldn’t read books at all.

         Well, there was one form of language left to me. I could still think and I could write, sort of, if I kept my eyes closed and propped my laptop on my knees. And I had to write, because if I didn’t, I would be entirely trapped inside myself.

         So I did what I could: As I lay in bed, I started to tell myself a story. It grew out of one of the broken little tales a maid tells to children in The Kingdom of Little Wounds: about a girl who was not one thing or another, not a fish or a landish woman or even a full mermaid, because her mother had lived on an island and a witch had enchanted the girl’s body to keep her with the flock. And this half-mermaid wanted to get control of her body. She wanted to walk on land. She wanted to find her mother. And she was going to tell her own story.

         That mermaid kept me alive. 

         Her name is Sanna, and she’s the heroine of my latest book, Mermaid Moon. When I could (and when I could remember what I’d imagined), I typed it into my laptop with my eyes shut. The result was complete gobbledygook—words substituted for other words, crazy misspellings, sentences that changed topic midway, two or three different stories running together and sharing sentences. I was terrified that the next development would mean I’d lose the ability to understand myself. Trying to get control of the story was frightening, but it was empowering too. Sanna masters the switch between fish tail and human legs and goes ashore. Her magic occasionally misfires, and a witch keeps her prisoner, but she finds a way out.

          One thing I discovered as I wrote the story (and rewrote it, and rewrote it again) is that in order to get what she needs, Sanna has to ask the right questions. That’s an experience all sufferers of chronic illness know all too well—at some point, we all feel like a confused character in a fairy tale, trying to solve a riddle and trick an ogre into not eating us.

         Greg and I asked questions. We tested Lyme Disease as an explanation for my problems. Health care providers’ opinions were mixed; one thought I had it, two said I didn’t, and one wanted to drip antibiotics into my heart for nine months to a year. Greg was opposed. He went through the stacks of paperwork I was unable to read, and he noticed in a tiny note that I’d been diagnosed with a condition no one was addressing: Sjögren’s Syndrome.

          I used one of my two sentences of the day on a response: “The doctor who found that said it didn’t mean anything.”

          But Greg did some research and found that was probably wrong. Sjögren’s dries out the tissues in the body; it produces brain fog and pain in the muscles and joints, many of the problems I’d been having. He works at a School of Pharmacy as PR and communications director, and he got recommendations from the professors.

          And in short, that was part of my solution. A new rheumatologist put me on Plaquenil, and then we went back to the neurologist with whom I’d started concussion treatment. I got on gabapentin for pain, pramipexole for twitching limbs, zolpidem for sleeping. I can now walk again, though not as much as I used to. I sleep a couple of hours a night, and I’m grateful for some rest. Although I’ll never be exactly cured, I have more of a life than I did two years ago.

          I’m grateful, too, that through all the adjustments to the new normal, I had not only Greg but also Sanna. The long process of publication gave me hurdles and goals: first were revisions, then galleys that showed how the text would appear, and discussions about cover art—Candlewick, my publisher, allows writers an unusual amount of input. 

          Mermaid Moon came out this past March, just in time for the COVID-19 pandemic. It hasn’t made much of a splash, but the point is that it exists. I conjured up a story when I thought I was losing stories and words entirely. I found the right questions. I found my legs again. Even better, I found my brain and the words. I may never get healthier than I am in this moment, but it’s something. I have a story.

          We all have those stories inside. Dive deep and write what you can.

Susann

Cokal

SINCE 1372
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