Posted by Avery Krantz-Fire on November 09, 2021
It happens in a series of moments. Sleepless nights. Weight loss. Pain that gets worse with every day. Seeing test results of climbing inflammation numbers. I describe it distilled into one single moment: waking up from my first colonoscopy and hearing the words “ulcerative colitis.”
Whether or not we realize it, we all have an idea of what the future is going to look like. It can include big things, like going to college, getting a job in a certain profession, or starting a family, and small ones, like a meal or an outing with friends. We imagine things as being a certain way without ever giving it a second thought, until something shakes that passive vision and it seems to suddenly disappear.
In March of 2020, I watched a YouTube video by Hank Green called “The Sudden Obliteration of Expectation” where he parallels his own experience of being diagnosed with ulcerative colitis and our collective experience of the start of the COVID pandemic. He describes “the feeling that your life is not going to be the same anymore, and there is no way to reacquire that sameness...this moment where you suddenly realize that you don’t know what the future holds anymore, and the story you’ve been quietly, silently telling yourself about what the future is going to be like just falls apart.”
Inflammatory Bowel Disease is, by nature, an unpredictable disease. Having a recurrence of symptoms, a scary test result, or a change in medication often brings up the same feeling as I had when I was first being diagnosed: a feeling of my vision of the future, whether immediate or longer-term, blurring out and being replaced by a deep feeling of uncertainty. For me, this uncertainty and unpredictability has been one of the hardest components of dealing with my UC. It brings those ideas I have of the future into question both in small ways (will I be able to go camping next week?) and big ones (will I be able to start college on time?), and not knowing how I’ll be feeling makes it difficult to plan for both the immediate and distant future.
As these moments come up again and again, it can be easy to feel like I’m just going in circles: a treatment that was working starts to fail and I feel like I’m back in the same place I was a year ago, or a flare-up happens and I find myself dealing with the same set of emotions I thought I had overcome. However, I have realized that there is a fundamental difference between how I experience these moments now, and how I experienced them when I was first diagnosed a year and a half ago: perspective.
A mentor once described to me a metaphor: You look at a two-dimensional image of a circle. You can trace it around and around, never moving up or out from where it started. But then, you look at the same image from a three-dimensional perspective, and see that it is not a circle but a spiral, moving outward and upward every time it circles around.
Medone, Henry. “Snail.” Fine Art America, 2019, https://fineartamerica.com/featured/snail-henry-medone.html. Accessed 30 August 2021
This is how I feel about my experience with IBD: while I may feel like I am moving in circles, repeatedly looking at the crumbling expectations of my future, I am not in the same place every time. Instead, I am approaching each new situation with all of the knowledge and wisdom from my past experiences.
As I continue to have these experiences, something changes within the fabric of the way I view my future. While I may not know exactly how my life will look or how I’ll be feeling--tomorrow, next month, or a year from now--I do know that IBD is now part of my life; part of the “new normal” that I am slowly adjusting to. As Hank Green describes this process toward the end of his video: “eventually there is a stability there, there is a new version of reality you can place yourself into, it just takes time to rebuild that.” I am still in the process of rebuilding what my future will look like, and I still feel some of the instability of having to constantly re-evaluate it. But I know now that every time I come around that circle, I am spiraling slowly but surely upwards: into a new normal that I will find my footing in among all of the uncertainties life throws at me.