Out of Necessity Comes Reinvention
by SB Divya
In August of 2018, I was having one of the best worst months of my life (no, that’s not a typo). I’d been nominated for a Hugo Award as part of the Escape Pod team, and I had sent my first novel, “Machinehood,” out to beta readers. I planned to celebrate both accomplishments at the San Jose WorldCon.
As often happens, life threw me a curve ball: two weeks before the convention, while on vacation in the Bahamas, my jaw locked up. I could neither open nor close my mouth fully. The pain was so excruciating that I couldn’t swallow, much less chew or talk. My spouse had just left his job, I was working part time, and we were in a transition month when we had no health insurance. Needless to say, I was very worried.
Let’s back up a few months. In March 2018, I went to my doctor with a painful sinus headache. My sinuses have had issues for most of my life, so we figured it was yet another infection or maybe just congestion. I took Sudafed. The pain improved. Problem solved, right? Not so fast.
The headaches kept coming back. After a while, they were daily, and I developed migraines for the first time in my life. Over-the-counter drugs didn’t always work, and too much pain medication would cause rebound headaches so I tried lifestyle changes. I downloaded a tracking app and made the correlation with air conditioning as a trigger, along with other factors. I tried taking a steamer to work, and I wrapped my face in a cloth (yeah, I was wearing masks before they were cool) at the office, but none of these solved the problem. In June 2018, I saw a specialist who pronounced my sinuses “pristine.” No blockages. No congestion. She suggested I see a neurologist.
By the time my jaw locked up, I had a headache all the time – asleep, awake, at work, at home. Sometimes the pain was mild, other times it was debilitating. I was terrified – how would I earn money? Travel? Attend a convention? All of these involved cold, air-conditioned spaces. On top of that, the constant pain made my brain foggy. I couldn’t think, and I relied on that for every aspect of my life.
I medicated my way through WorldCon and the Hugo Award Ceremony. I couldn’t smile all the way for pictures.
Eventually, that November, I saw a neurologist who diagnosed me with idiopathic chronic migraine and dystonia of the jaw. I wrote in my journal, “One more thing to add the list of Stuff To Manage: myopia, UTIs, acid reflux, chronic headache/migraine. I guess it’s not so bad, all things considered.”
Chronic pain is a disability, an invisible one. I made changes to cope, and I grieved over the loss of certain activities and pleasures. I had to come to terms with my new way of living – more work from home, regular sleep and eating habits, giving up caffeine, caramels, and big sandwiches, reducing travel, talking and smiling less. I accepted my mental fog and decline in memory. I forgave myself for accomplishing less and resting more.
One of the great things about human beings is how well we can adapt to our environment. We can change. It’s not easy, but it’s possible. I’ve always embraced the axiom that change is good, and I’ve had more than one occasion to practice this. I’m lucky that my family chose to take the journey with me, sweating under fans rather than subjecting me to A/C, helping me prioritize sleep and exercise. I’m also lucky that my neurologist prescribed a treatment that has helped immensely.
After nine months of Botox injections, around September of last year, I finally had a day without a headache. Now, as long as I continue the shots and keep up the other lifestyle adaptations, I’m sometimes pain free. It’s not perfect (I have good days and bad days), but I’m immensely fortunate that a) I received an accurate diagnosis, b) there exists a drug that helps me, and c) I can afford these things. Not everyone is so lucky.
These were some of the driving thoughts as I wrote a short story for this anthology. In the aftermath of apocalyptic social change, who will have access to medical care? What happens to those who don’t? How will people with disabilities cope in an environment that’s hostile even for the able-bodied? Is there any way this could lead to something positive?
As far as I know, much like with my other disabilities, this one is here to stay. If my circumstances change, if I lose access to the treatments or they stop working, I will go right back to where I was a year ago. The pandemic has, oddly enough, helped me in several ways. I can cover my face and not feel self-conscious. I can work from home in a warm room all the time. I can attend conventions (virtually) without subjecting myself to air-conditioned rooms. Society wasn’t going to accommodate me before, but, without even realizing what it’s doing, it has made my life easier going forward.
Rebuilding Tomorrow is another exercise in embracing change. What good might come of starting over after an apocalyptic event? In what ways could society adapt that might create a better future, especially for those whose needs are often ignored or overlooked? Yes, there will be hardships. There always are. But out of necessity comes reinvention. I know, because like so many others, I’ve experienced it myself. And that gives me hope.
Divya’s story, “Textbooks in the Attic” will be appearing in Rebuilding Tomorrow. You can help make Rebuilding Tomorrow a reality by backing us on Kickstarter.
S.B. Divya is a lover of science, math, fiction, and the Oxford comma. She is the Hugo and Nebula nominated author of Runtime and co-editor of Escape Pod, with Mur Lafferty. Her short stories have been published at various magazines, and her debut novel MACHINEHOOD is forthcoming from Saga Press in March, 2021. She holds degrees in Computational Neuroscience and Signal Processing. Find her on Twitter @divyastweets or at www.sbdivya.com.