That it’s Halloween today will probably make this post seem very purposeful in its timing. But I’ve been writing it in my head for a long time.
That some of the thoughts closely resonate with feelings we associate with Halloween just makes it fortuitous.
It’s not the perfect word, but it will do. I’ve compared my struggle with ulcerative colitis to a horror movie before:
But I often feel like my digestive system is my own monster, my IT stalking me in the shadows, retaining a will and life separate of my own.
It’s been two years now since I’ve been ill. I still have some minor problems, but hospitalizations, ER visits, extreme pain, and rapid weight loss are in the past.
But your past has a way of haunting your present, and it stalks you in the shadows, always present and by your side.
I recently went on a Netflix binge, watching the Haunting of Hill House. And to me, it hauntingly demonstrates the way that past trauma can sneak into the subconscious and physically manifest itself in the present.
Past is Present
The past preys on my mind. It’s not like I want to be constantly thinking about past manifestations of my illness. But still, it happens.
Sometimes there is a trigger. A popped helium balloon smells and tastes like a saline flush in an IV. It transports me back to the hospital when that taste was constantly in my mouth.
Listening to someone choke or watching something be stuck down someone’s throat (the feeding tube scene in Penny Dreadful, season 3) probably bothers a lot of people. But now, it feels personal and makes my own throat tighten and struggle. I remember the feeling of having an NG tube shoved up my nose, down my throat, and into my stomach.
But a lot of times there is no trigger. I’ll be washing dishes, walking, or doing any other daily mundane activities and fleeting images, like short video clips, will flash through my mind.
In one I’ll be passed out on the floor drooling, in another I’ll see masked faces popping in and out of my line of sight, and in another, I’m trying to talk but I can’t because of the tube in my throat. My eyes are bugging out and my throat is clamping down on the tube and people look at me with blank and uncomprehending faces, walking and talking around me like I don’t exist.
Writing helps exorcize the hauntings from my mind and helps make room for other more pleasant thoughts and images.
I’m also hoping that interacting and talking with more people who have ulcerative colitis will help me. In the psychological horror genre, hauntings don’t go away until everything is dragged out and exposed to the light of day with others as witnesses.
My superstitions aren’t based around black cats or broken mirrors. I’m superstitious about committing to events in the future, especially ones that require more than a $100.
When the tickets for Everything Food Conference 2019 were on sale for a short period of time, I hovered over the “buy” button for so long. I kept trying to click it, to commit, to convince myself that nothing bad would happen to me if I bought tickets. But I couldn’t do it.
I still believe that if I make a monetary commitment for something like that, almost a full year in advance, I will jinx myself. I’ll find myself hospitalized during the event and won’t be able to go.
Buying concert tickets are how I’m slowly getting over my superstitions. I’ll get deals from Spotify based on my playlists and buy tickets to shows up to three months in advance. Nothing over $100 yet, but I’m making progress.
I’m not sure about how it is with other diseases, but I feel like it’s common to begin looking for ways to give back once you’re well again.
While ill, you’re just going through the motions and it’s hard to think about what you can do for others.
Giving back doesn’t have to be financial, which is sometimes hard for people with large and regular medical bills. It can also be giving your support, sharing your experience and advice, and participating in the community.
I recently went to my first Crohn’s & Colitis Foundation Bay Area Patient & Family Education Symposium, where I learned a lot about the community and different ways for me to offer and receive support. It made me wish I had gotten involved sooner and I’ll be looking forward to participating in more events.
So ends this ulcerative colitis confession. I hope it has successfully exorcized these thoughts from my head so I can make room for other things.