Personal Essay: "Being Invisible" by Joyce Chng
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Here is today's new Disabled People Destroy Science Fiction personal essay (edited by Nicolette Barischoff). These essays, much like their counterparts in the previous Destroy Kickstarters, will feature disabled creators sharing what it is like being a disabled person in the science fiction community.
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"Being Invisible" by Joyce Chng
“The Lessons of the Moon” (published in Accessing The Future: A Disability-Themed Anthology of Speculative Fiction, edited by Djibril al-Ayad and Kathryn Allan) is in part a story about me and my body. How I coped with loss and disappointment, and the realization that I am disabled. I wrote a protagonist who chooses, in their pain, to become an alien-destroying machine. Part of me yearned so much to be a cyborg or a machine, because my physical body seemed (seems) to be failing me.
I have an invisible disability. No, let's make that “invisible disabilities.” I pass as normal/able-bodied, but I will let you in on a secret: I was diagnosed with hypertension when I was sixteen. Since then, I have been on anti-hypertension medication. Because of my hypertension, my two pregnancies were “high risk,” coupled with placenta previa. Because of the trauma from my first pregnancy, I also became depressed.
When I was about 39-40, I had granulomatous mastitis which is basically non-cancerous growth in my breast. I was put on steroids by my surgeon. There began the slow, painful, and exhausting healing/recovery process which wreaked havoc on my body, both physically and emotionally. Because of the steroids, I was advised to go off on my anti-depressants. That was not fun.
And because of the prolonged medication, I now have mild fatty liver which I am told is reversible with a strict (read “restricted”) diet. Steroids and painkillers, thanks.
So, my disabilities are invisible. They are also chronic illnesses I have to deal with for the rest of my life. When I was younger, still shocked by the diagnosis of hypertension, I thought I was truly hampered by this illness. I was weak. Why me? Why now? Why these limits? Why am I trapped within this failing chunk of flesh? It didn’t help that the incredibly sensitive and tactful specialist (not) told me, point blank, that I might just stroke out and die.
Well done, sir. You just frightened a teenager shitless with their future right before them. I changed specialists. My new doctor didn't have the manners of a brick. I stopped taking bad medical advice, took up tennis, and grew confident. I wrote in school publications. I was happy. I took my medications. I didn't stroke out. I simply learned to live with the new limits of my body.
Most people who meet me will never know how firm or sudden those limits can be, especially when I’m experiencing a bout of fatigue. When I was recovering from granulomatous mastitis, I struggled with bone-deep fatigue when trying to teach at the same time. I would be writing my lesson plans, teaching 14-year-olds in the morning, and the bone-deep fatigue would remind me about my limits. I would go home by the end of the school day, my body feeling hollowed-out. There were good and bad days. I cherished the good days and loathed the bad days because bad days meant I am not productive, I can't write, I can't live normally. I was just blah. My breast surgeon laughed when I told him about this and said that I was his first patient who experienced all the bad side-effects. I was not amused. I did get better. For now, I have annual mammograms done and a yearly appointment to see him.
The hypertension is still there, like a caged and tamed beast. Somnolent and subdued by the meds at most times, I have to watch it lest it bare its fangs and claws.
Part of myself coping with all this came out when I wrote “The Lessons of the Moon” My frustration and sadness wove into the story. I hated my body. I still tear up when I think about the writing process for the story. In fact, I wrote the poem on the day I had my biopsy done. My left breast burned as if it was on fire. The local anesthesia didn't work. My breast tissue was just too inflamed, according to the surgeon. She was very kind and understanding. After the biopsy, I went to my parents' to recuperate. In the silence of my dad's study room, I wrote. In the rest of the story that followed, the pain and disappointment throbbed as undercurrents. As an alien-killing machine, the protagonist is finally free… or are they? Have they made the right choice? Having a cyborg body is tempting, immensely so. Yet, is being part-machine or all-machine the best solution to my problems? Will all my illnesses go away?
It will come back, my breast surgeon reminded me. It will come back. It’s just hiding now, like the hypertension. Cowed, but defiantly clinging on.
My disabilities are invisible. In my country, they are not even considered disabilities. Just chronic and auto-immune illnesses to be managed by healthcare providers. Healthcare's getting more expensive too. I can't help but wonder if I’m now a liability in the long run. Carpal tunnel syndrome. Rheumatoid arthritis. They just keep on piling up.
My wish is that people with invisible disabilities would speak up more. We pass as able-bodied. Our bodies remind us otherwise that we are not. Writing “The Lessons of the Moon” taught me that we need to have more SFF stories about disability, especially invisible disabilities. The story contains my silent anxiety about having an invisible illness which doesn’t really go away, but will only deteriorate over time. May genre fiction hear more of our voices.
Joyce Chng lives in Singapore. Her fiction has appeared in The Apex Book of World SF II, We See A Different Frontier, Cranky Ladies of History, and Accessing The Future. Joyce also co-edited THE SEA IS OURS: Tales of Steampunk Southeast Asia with Jaymee Goh. Her alter-ego is J. Damask.
Joyce Chng is Singaporean. She writes science fiction, YA and things in between. She can be found at @jolantru and A Wolf's Tale (http://awolfstale.wordpress.com).