Writing Bug

Sarah loved to write stories (and read them) on a website called Tar Heel Shared Reader that supported AAC access and offered eye gaze interface with her speech device for writing. She wrote about two or three dozen books on there with help from her tutor. She also wrote books on Google Slides with her middle school occupational therapist, Katie Ablard, like the classic Sarah and the Purple Glue Stick that I detailed a few weeks ago. She definitely had the “writing bug,” as my Dad puts it.

Some people who have seizures have a strong desire to write. And there are a lot of famous writers and artists with epilepsy; the condition seems to be kindling for the left temporal lobe’s creative role in the brain, if your seizure focus lies in that part of the brain. Mine does, and also somewhat in the frontal lobe too. (You know that scene in Young Frankenstein where Marty Feldman comes back to the lab with the “Abby Normal” brain?) We never discovered exactly where Sarah’s seizures started up in her brain, but I don’t think we had much motivation to chase that down on top of all her other medical concerns. We were just relieved that they came under control easily with medication, or so we thought.

Sometimes the desire to write can become compulsive and overwhelming for people with temporal lobe epilepsy, in which case it’s called “hypergraphia” and can be part of a larger neurological/behavior syndrome seen in people with epilepsy called Geschwind Syndrome, which I’ll let you look up yourself if you find all this brain babble interesting. A very small percentage of persons with temporal lobe epilepsy have hypergraphia and Geschwind Syndrome and I believe Dostoyevsky is supposed to have been a classic example.

I don’t think I have hypergraphia, but writing can be very compulsive and deeply satisfying for me, both personally and professionally. As you may know, I write in this blog daily, which some people find surprising but seems normal to me. In fact, I often think of other things I want to write about as soon as I’m done writing a post and I jot down little memos in my phone about my internal monologue. I call that Mono-blogging.

When I was a kid, I engaged in writing projects a lot by myself. I started my own fashion magazine when I was eleven: Desire: Fashions For The Well-Dressed. The articles were (in order of literary value): Cool Is The Rule With Halters; Feet Can Be Neat Too, and Denim Is In. I also illustrated it myself with felt-tip pen drawings of, wait for it, halter tops, jeans, and sneakers. The front cover featured some rather intense East German-looking models hulking their way down an invisible runway in gauchos and boots.

Desire was not a threat to Vogue and folded after its premiere issue. Later, when I was 22 and trying to pay my rent, I wrote a romance novel while I was supposed to be doing office temp work called Investment In Love. It was about a woman civil rights activist who falls in love with a corporate bigwig she is trying to persuade to divest of his financial holdings in apartheid South Africa. (I’m really dating myself with that one). Both Harlequin and Silhouette turned it down as “too political” for their readership, although my friends and family enjoyed it a lot. There were no actual sex scenes, just a lot of warm fuzzies and heated smooching at corporate golf events.

Maybe Sarah got the same feeling of satisfaction from expressing herself in writing. She liked to write stories about her friends, tales about her stuffed animals, and the figures from Minecraft. She talked about the presents she wanted, and about Covid. During Covid, she also wrote several stories about her favorite stuffed animals falling ill, and how she and Doc McStuffins and her other stuffed animals would care for them and make them better. I think she worked her fears out this way. I hope so.