“Let me know if you need anything!”
“You can call me anytime!”
Content warning: mental health, trauma, gaslighting, violence.
You’ve probably said something like this: I know I have. You’ve also probably been on the receiving end of it as well. But are you truly prepared to help someone who is experiencing a crisis? If you’re the one in a crisis, would you really reach out for help, or accept the help that’s offered?
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Being in a wedding party is a difficult time when you’re diagnosed young with inflammatory bowel disease (IBD). While it is an honor to be asked to participate, for me, it came with the challenges of being fitted for a dress while living with severe ulcerative colitis.
When I was in my early 20s, like many women, I was a frequent bridesmaid. In some cases, this meant being fitted for a dress that was picked out by the bride. All the women in the wedding party would order the same dress, in the proper size, and have it altered, if necessary.
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Contained below are mild spoilers for the Season 2, Episode 4 episode of Farscape, “Crackers Don’t Matter.”
In 1999, my husband and I came home to his parents house after a night out. We found my mother in law watching the Sci-Fi Channel, as she often did in those days. The show that was on was Farscape. It was everything that the other sci-fi shows of the era were not. It was intelligent, bright, messy, sexy, funny, and relatable. I immediately fell in love with it.
The premise of the show is that John Crichton, astronaut, is testing his ship, called a “module,” in low Earth orbit, when he’s catapulted out of the galaxy through a wormhole. He winds up in deep space, immediately pisses off a high-ranking military officer, falls in with some escaped prisoners, and is off on an adventure.
Oh, and there’s no way to get home because nobody knows where Earth is located.
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Spoilers for Alien are included in this post. If you haven’t seen it, go watch it and come back. It was released in 1979, but I promise it holds up.
What any individual person takes from a piece of art is shaped by their views and experiences. Two people can read the same book, see the same movie, or view the same sculpture and take different inspiration from it. This can be true even when the intent of the artist is fairly clear, because we all view art through our own unique lens.
That being said: Alien is a horror movie. I’ll tell you why.
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When I asked Rosanne Mottola to come on About IBD and discuss her recent vaccination against COVID-19, I was excited that we could share her story with other people who live with inflammatory bowel disease (IBD). It has been a difficult year for everyone, but people who live with Crohn’s disease or ulcerative colitis have also weathered a significant amount of uncertainty in regards to their health.
I also asked her to come back to briefly update me after her second dose and I thought I’d add it on as a segment of a longer episode. My intention was to understand how she felt physically and emotionally after the second shot, which wouldn’t take long. But it turns out we had more business to discuss and instead, we created another full-length episode together.
It became clear to me that Rosanne’s experience through the process of agreeing to tell her ulcerative colitis story and in creating Episode 87 with me brought up some salient issues that I’ve probably been long remiss in addressing.
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I remember looking down at my abdomen shortly after having the first of two surgeries to complete the j-pouch procedure for treating ulcerative colitis. It was open surgery, so I had a line of staples closing the surgical site that was about 8 inches long. I spent most of those first weeks with a pillow clutched against my abdomen because it felt like my guts were going to fall out. I couldn’t imagine how I would ever complete a simple sit-up again.
Yet, I did recover. I can do the things that seemed beyond reach in those first days and weeks, but it didn’t happen right away or without effort. As the country becomes vaccinated against COVID-19 and we consider next steps, I am reminded of that feeling of having no idea how I would ever be whole again. Restarting a face-to-face life is off in the distance: hazy to the point of being unrecognizable. I’m struck by the similarities between resuming life after surgery and resuming life after a pandemic. They happen slowly, with the individual steps being so small they are almost imperceptible.
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I remember the first article I wrote about the Patient Protection and Affordable Care Act (ACA). It was in 2010.
During my research, I saw that part of the legislation was that “pre-existing conditions” could no longer be used to deny insurance coverage, starting in 2014.
The implications were so personal and important to me that I cried.
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As of this writing, for the past two months, I have not been to a pharmacy or a grocery store. I have used a delivery service. I, like many other people who live with inflammatory bowel disease (IBD), am immunocompromised because of the medication I receive. I am now reliant on other people to obtain the things we need for our household, but it’s unclear to me if this is the right decision.
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The impact of human activities on the environment is well-documented. Many people are concerned about how their daily lives can have a negative effect on the air we breathe, the water we drink, and the health of ourselves and of our children. My background is in environmental science: it began in high school when I worked to institute a recycling program in the lunchroom. I went on to earn my Bachelor of Science in Environmental Science from Michigan State University.
While there’s nothing we can do about having inflammatory bowel disease (IBD), there is something we can do about how it impacts our environment. Crohn’s disease and ulcerative colitis need treatment over a lifetime and this comes with a variety of choices. Environmental responsibility may be pretty far down on the list of things most people with IBD are concerned about, but there are some simple choices we can make that can have an impact.
The place were we have a lot of control as patients is in our own home and in how we manage our disease (alongside our healthcare teams). A few little changes can make a positive impact in how your IBD affects the word around you. I present some areas where we can think about making choices in regards to our IBD that may help us leave a smaller footprint.
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The last thing my family did before going into quarantine at home was to go to the grocery store, of all places, to sell Girl Scout Cookies and fundraise for the Boy Scouts. We meet all kinds of people while fundraising at the grocery store, and this time was no different in that respect. However, there were some noticeable contrasts, as most people were keenly aware that we were facing changes to our everyday lives in response to the pandemic.
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