Crohn’s Star and an excerpt from A State of Disease are available now to read on Wordgathering, an online journal focused on disability literature.
When I write stories, I handwrite everything because the restriction on speed leads to more intentionality with my word choice and sentence structure. In January 2024, I was writing at The Brass Tap, a bar in my area, and created what would become my first short story to be published online or in print. Picture a notebook and a Moscow Mule on a high rise table, and that is how Crohn’s Star came into being.
A few days earlier, I had typed “pornstar with Crohn’s Disease” onto my phone’s notepad. I knew that I wanted my story to focus on Crohn’s, even though I have Ulcerative Colitis. The two conditions are in the same family of chronic illnesses: Inflammatory Bowel Disease. They have key differences but have the same societal associations – being paired for charities such as the Crohn’s and Colitis Foundation.
I think the pairing of illnesses is largely successful due to the alliteration; it just has a nice ring for something describing suffering. The pairing has the powerful benefit of creating a strong community, though. For a second year in a row, I have proudly attended the Take Steps Virginia charity walk hosted by the Foundation, and I routinely attend Crohn’s and Colitis support group meetings.
I also feel as if the pairing has subliminal consequences. I believe it minimizes the unique experiences of those with Crohn’s and the unique experiences of those with Colitis. Each condition needs to be seen in its own light. The pairing of “Crohn’s and Colitis” has influenced me to see them as indistinguishable at times, when they are clearly not. Despite my Crohn’s peers and I having similar symptoms and taking similar or identical medicine, we have different titles to live under, and a title can be everything.
Reading too much into the names of diseases or organizations is not something I’d encourage. I don’t actually feel like Colitis is made secondary by the Foundation with the phrase,“and Colitis,” but language is powerful and the wording of things is absolutely essential in our world. This idea is why I selected to write about a pornstar with Crohn’s Disease and not Ulcerative Colitis.
Having studied English in college and now teaching secondary English, I have spent too much time hyper fixated on the intricacies of language. What I love the most about poetry is how a single usage of punctuation can change EVERYTHING when you read closely. The apostrophe in Crohn’s caught my attention, and I wondered how I would feel having an illness with the grammatical implication of ownership.
The reason why I chose a pornstar to be the character is multifaceted. IBD is blatantly about excrement, sometimes bloody excrement. It isn’t a pleasant topic, and I felt like the unpleasantness and mundane sexuality of the porn industry would minimize the actual symptoms. In living with a chronic illness, I am unfortunately also hyper fixated on my body. The bodies of pornstars are commodified and objectified, so I know they must be hyper fixated on their bodies as well. The nature of the human body in all its unpleasantness became essential to the story’s idea.
In the digital age, I believe porn addiction is a feature of life that is destroying society. It destroys young men, which then destroys relationships. This is something that isn’t talked about enough, so I wanted my story to address pornography to some degree. Our world is hypersexualized, and at the border of 24 and 25, I was tired of it. Showing this hypersexualization as disgusting or mundane, lost of value, is what put the star in Crohn’s Star.
The tragedy of the story is that no one cares about Andy’s diagnosis with Crohn’s. Unless one has a support group through something like the Crohn’s and Colitis Foundation or VERY understanding friends, then a chronic illness will be extremely isolating and depressing. At many points during my flares while in college, I felt suicidal, as in my experience, there is less immediate support thrown at you after eighteen. Any support will have to be sought yourself, which is not easy to do when the symptoms can be debilitating or traumatizing.
Unlike Andy, I was diagnosed with IBD while still in high school. It was jarring, hopeless, and caused a myriad of unique social problems, but I did receive support from some teachers. Even small acts of kindness made a massive difference for me during that turbulent time period. The vividness of diagnosis and its trauma have made those moments of kindness all the more vivid as well. More than any medicine the world could manufacture, I believe kindness, empathy, compassion, and understanding are what chronically ill people need. It is what has helped me the most over the years, and what Andy does not have.
On another note, I’m immensely grateful that Wordgathering was also happy to take on a solo excerpt from my currently unpublished YA novel, A State of Disease. This was a project that I wrote in 2018-2019, and was my first real writing that tackled IBD after my own diagnosis in 2017. In short, I was under 20 when I wrote it.
The excerpt published on Wordgathering shows Tobias, the novel’s protagonist, struggling with Ulcerative Colitis symptoms before he is diagnosed. As he is a high school senior, his situation is much more grounded in my own experience. The novel is not autobiographical, however, as the main plot centers around a murder mystery in the school. Tobias’ worsening condition is strongly connected to the emotional stresses relating to the other characters, one being Lucine, who is briefly mentioned in the excerpt.
It has been so many years since I wrote this novel, and I’ve grown immensely as a writer and individual with UC, that I’ve slightly brushed it under the rug. One day, I would like to bring its darkness into the light, and I’m glad that Tobias’ character can get some recognition thanks to the excerpt.
The ideas displayed in Crohn’s Star; male body dysmorphia, pornography, and chronic illness, are of high interest to my creative mind in 2024. From March to July, I have been writing a full novel that addresses male body dysmorphia to a higher degree, though unrelated to Colitis to connect with a wider audience and express myself beyond my condition. I’m very excited about the project, and I am currently sitting on an Ulcerative Colitis verse memoir that I hope to publish as soon as possible. Exploring my condition and the human condition will not stop any time soon. Interested literary folk are encouraged to contact me if they have inquiries.
- Aaron Pharr, August 2024