Previously on The Creator’s Roulette, we have talked about representations of chronic illness and disability in fiction with Allison Alexander. Today, we are going to learn about the challenges of being a writer and persevering on with chronic illness. I have Kody Boye with me today and it is pleasure to host this personal post and be able to ask him some questions.
Writing with Chronic Illness
My hands ache. My eyes burn. There’s a dull pain in my head, and in my lower back. I’ve also, while penning this, been fighting a general sense of malaise, which not only makes me tired, but easily irritable.
While this combination of symptoms might sound unusual to some, they’re often a daily occurrence for me.
For those of you who don’t know me: my name is Kody Boye, and I live with a chronic illness—most specifically: the human immunodeficiency virus.
But what is the human immunodeficiency virus? And what does it do to me?
Better known by its three-letter anagram (HIV), the human immunodeficiency virus is an infection that attacks the body’s immune system (CD4) cells. It can cause a variety of symptoms, but if left untreated, the virus eventually leaves the infected person unable to fight off infections, and even infection-related cancers.
In decades past, this illness killed thousands of people worldwide, and contributed to stigma that continues to persist to this day. Nowadays, most compare the condition to diabetes—manageable, but lifelong.
Lifelong.
It’s a word that most would balk at, a diagnosis that would cripple others. For me, it’s been my life for the past five years. I’ll officially have been diagnosed for six years this November.
The most common question that I am asked when it comes to my writing is: how do you maintain your work ethic?
For me—and, I understand, many who suffer from illnesses like mine—the drive to create comes and goes. Some days are harder than others. On Monday, I can stay up for twelve hours straight and work on my writing, schoolwork, or freelance projects for most of them. On Tuesday I am plagued with bodily pains when the virus decides to aggravate muscle tissue and nerves. Wednesdays I can have brain fog, Thursdays I might have insomnia. Sometimes, though, I am perfectly fine—and feel normal in every sense of the word.
The only problem is: I’m not exactly ‘normal’ (at least, not by the typical definition.) I am, by common terminology, serodifferent (which means that I am infected with a virus that someone else might not have.) Because of this, I experience symptoms in my everyday life that most people might not.
The thing that most people don’t understand about chronic illnesses (and especially ‘invisible’ ones) is that one’s symptoms may vary, oftentimes in intensity and number. This is what makes creative work challenging (and sometimes impossible depending on the condition.)
For me, there’s a certain sense of accomplishment when I manage to do what I set out to on any given day. Pre-diagnosis, writing every day (or at least working on a creative project in some capacity) was a mantra of mine. Nowadays, I work within the capacity my body allows me, whether that be five-hundred words or five-thousand.
I am well aware of how fortunate I am when it comes to my healthcare. I have access to primary care doctors. Specialists. Medication. Treatment. In years past, most who contracted the virus died from it (and horribly at that.) Today, I can live life fully, without the fear of succumbing from my illness. And while my privilege shouldn’t discount the people who do die due to complications of HIV and AIDS, it offers glimmers of hope for the future—where conditions like this may someday be cured.
Thank you for sharing this very personal post, Kody! I started working from home a couple weeks back and the lack of energy I feel led me to understand my friends who have chronic illness better. I talked to Allison Alexander about it in another post. What are some of your passions? How do you cope with not having the energy to pursue them at times?
My greatest passion is, without a doubt, my writing. I also love being able to help other authors achieve their goals through my publishing services business, which I’ve operated for the past ten years.
I would say that, when I don’t have the energy to pursue my goals, I concentrate on things that I feel will benefit my writing or my business—such as learning about other authors, their tactics to gain success, and the advertising methods they use to attain a broader readership. The writing climate is constantly changing, and it’s not easy to keep up even when you’re feeling up to par. However—I feel that the more I learn, the easier things are to manage, even when I am feeling unwell.
For me, the hardest part is forgiving myself when I don’t have the energy to do something. How have you adjusted your writing goals and targets based on your energy levels?
I write when I can nowadays. With everything I have going on—my business, my schooling, and my own career—I concentrate on writing in spurts of late rather than long hours. The arthritis in my hand and wrist is consistently plaguing me of late, and as a result, I have to learn to ‘step back’ in order not to aggravate it. Medication helps, but, again: it only dulls the pain, not actively works to fix it. Setting micro goals is, for me, a much easier way to still get work in while still working toward the bigger picture.
What are some ways in which writers and readers can learn more and spread awareness about chronic illness?
I think the best way to learn more about chronic illness and spread awareness about it is simply to listen to those who are affected by their condition. While the internet offers blanket lists of symptoms, seeing how they influence people’s lives, actions, and livelihoods in real-time is far more educational and eye-opening than reading a medical text on the internet.
What are some things that bring you comfort when you feel low in energy?
My biggest comfort when I feel low on energy is my cat, Jezabelle. Given that I had her before my infection, she’s come to learn my cycles of energy, and will often try to coerce me into bed in order for me to rest.
Beyond my companion, I find that books, television, funny Youtube videos, and my Facebook and Twitter friends are super helpful.
Your latest book is out today! Can you tell us more about the process of working on this book?
The Monsters Within is a rewrite of something I wrote as a teenager. Working on it brought back a lot of memories, particularly in regards to my troubling youth. I wrote the novel not long after I was forced out of school due to a prank (in which someone accused me of posting a death threat toward my school on the now-defunct MySpace,) so the flood of memories that came with it made it troubling at times to write. I also incorporated a lot of doubt, insecurity, and mental illness into it, which made it hit a little closer to home at times.
It took about a month-and-a-half to write in its entirety. I ended up revising it three times before it went for copyedits, then a final time before I released it in full. KDS Cover Concepts arranged and worked on the cover, which I feel suits the book’s creepy atmosphere while still maintaining a sense of mystery about it.
I hope you found this conversation with Kody Boye insightful! You can find more about Kody on his website, Facebook and Twitter. Take a look at his latest book here.
Banner Photo by Thomas Kinto on Unsplash
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