In the spring of my junior year in high school, I met with my senior year Advanced Placement English teacher. I don’t remember much of that meeting, such as what we talked about, or even its purpose.
What I do remember is the store room she took me into.
It was a room with library shelves, which contained all the books that were used for the English classes. Paperback copies of staples like Steinbeck and Hemingway. Shakespeare and Dickens.
She told us (there were more students there, although I don’t remember exactly who) that we could choose any books we wanted to take home to read over the summer. The year was 1990 — Kindles were far off and at least for me, library access was limited.
I walked up and down those aisles and grabbed whatever caught my attention. I didn’t know many of the authors or the names of the books. They weren’t all familiar to me at the time. But I grabbed To Kill a Mockingbird, Brave New World, Frankenstein, and Slaughterhouse-Five, among others.
I also found a copy of Dune.
“He Had Already Learned Silence”
It’s a famous work of science fiction, which is now the subject of two movie adaptations (both of which I love) and a TV mini-series (which I do not enjoy). It has many themes, some of which include religion, environmentalism, politics, and human potential.
The first time I read Dune, I had already been diagnosed with ulcerative colitis. I was always a reader but became even more so while coping with the first few years of flare-ups and hospitalizations.
Most of the characters in Dune have secrets. Some of them plot and scheme with the help of others, but the main character, Paul, keeps much of his inner life to himself. He’s unlike anyone else in the universe because of his unique abilities. His genetics, his upbringing, and then his experiences in becoming a ruler are what lead him to make the choices he does.
He is surrounded by people who have some similar abilities and backgrounds, and who serve him as advisors and friends, but they can never truly inhabit his experience. He projects an outer aura of leadership and strength, and it’s important that he does, but he is also aware he has limited control over his own destiny.
He doesn’t share some of his knowledge, including horrible things he will know will come to pass, with anyone else. He tries to spare the people he loves from harm, but in some cases it’s not possible. He scares people. They look at him differently when he exposes his true self.
Because ultimately, he’s alone.
“Fear is the Mind-killer“
Our life experiences are unique and help shape us into who we are. We can find others who have similar interests and backgrounds. After all, it’s easier to find common ground with a friend or a lover who comes from the same town, is of the same religion, or has the same hobbies.
One of the most difficult parts of living with an inflammatory bowel disease (IBD), besides telling people the name, is that every person’s disease is different. We have categories we lump this disease into — Crohn’s disease, ulcerative colitis, or indeterminate colitis — but they’re often not clear-cut. In fact, there may be anywhere between 50 and 100 of forms of IBD.
Does that mean we are alone?
From the beginning of his story, Paul is faced with impossible choices. He has a mantra, taught to him by his mother, called The Litany Against Fear, which helps ground him in tense moments. He draws on the physical skills he learned from his trainers. He surrounds himself with loyal, intelligent people who counsel him. But it’s up to him to choose his path, and at times, he doesn’t know which one is correct.
The Bene Gesserit Litany Against Fear
I must not fear.― Frank Herbert, Dune
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.
“Truth Suffers from Too Much Analysis”
It all boils down to this: you will meet other people who live with the same disease, but your experience will still be uniquely your own. There are times when you will feel like keeping your IBD to yourself. You will want to spare your loved ones the reality: the pain, or the bathroom trips, or the emotional trauma. You don’t want them to look at you differently. You don’t want them to be fearful of, or for, you.
However, you have been changed by your diagnosis and keeping that inside and hidden is really difficult. It’s true that people who don’t live with an IBD can never fully understand your journey. Complications, the way you react to medications, even how your diet affects you, is completely individual.
But: you are not alone.
You might be called to create your mantra, your own version of The Litany Against Fear. It could be a quote, a photo, or an image. You might keep it with you to draw on during difficult times. It might be shared or kept private — the choice is yours.
You can pull your advisors around you, which includes your medical team, your family, your friends, and your IBD family, and engage them for advice and support. They can teach you so many things that will help you make the best choices with the information available to you. They can support you through the pain and the difficulty.
They want to be with you in your challenges and it is your job to let them. To tell them the truth. To be open about your symptoms with your doctors and how it affects your life. To ask for help from family and friends when you need support. After all, if you don’t tell people what is happening with you, how are they to know?
“Do You Wrestle With Dreams?”
Paul, on his journey, leaves his home planet (Caladan) where he has always known safety and travels to a planet where his life is in danger (Arrakis, also called Dune). He would not have grown into his potential had he stayed on Caladan. It was necessary for him to be uprooted to find the people who were best suited to support him on his path.
The people who will likely help you feel the most connected and supported are those who also live with an IBD. It may take work to find them, either online, through in-person support groups, or by volunteering with a patient advocacy group.
When you find your IBD family, you’ll have so much in common. You will have a shorthand with them that you have with no one else. They’ll have an understanding of the times when you are alone with your disease, whether it is during tests, hospital stays, or middle of the night trips to the bathroom.
No matter how you approach your disease or its treatments, you’ll need other people on your team who understand you as best they can, a spectrum which is framed by their own life experiences. You must determine how much transparency each person needs, wants, and can accommodate. This isn’t easy, and you’ll make mistakes of either “oversharing” or “undersharing.”
One of the themes in Dune is adaptation: human, environmental, and societal. You didn’t ask to live with an IBD. You don’t have complete control over how it affects you. What you do have is the ability to adapt, to let the people around you understand your reality, and to learn what they have to teach you. This is how you will find meaning in your journey and truly grow into your potential.
“The mystery of life isn’t a problem to solve, but a reality to experience.”― Frank Herbert, Dune
Wood M. Combination of IBD medications offers bridge to avoid surgery. The University of Chicago Medical Center. May 24, 2018. Available at: https://www.uchicagomedicine.org/forefront/gastrointestinal-articles/combination-of-ibd-medications-offers-bridge-to-avoid-surgery