I was fortunate to see The Matrix on its first run in theaters when it came out on March 31, 1999. We knew little about the movie at the time, only that it was science fiction and it looked amazing and that we would want to see it on the big screen and not later on VHS (DVD was not yet mainstream). The movie came out only a few weeks after my first of two surgeries to create my j-pouch (or IPAA, ileal pouch-anal anastomosis) to treat ulcerative colitis (which is one form of inflammatory bowel disease, or IBD).
I love The Matrix, and how could I not? It contains so many narrative aspects I enjoy, including science fiction, robots taking over the world, an unconventionally beautiful and lethal female character, and a kick-ass soundtrack. To be honest, there are a lot of things about the plot that don’t hold up to serious scrutiny. But that’s fine, it is still amazing and undeniably groundbreaking in both storytelling and technical aspects.
When The Matrix opens, the watcher has no idea what is going on. This is my favorite way to be pulled into a story: absolutely cold, with no frame of reference. There’s no exposition; the narrative plunks you right into this universe that works differently than the one you know. You have to make a decision right then and there, if you are all in and if you’re ready for the filmmakers to take you on the ride and teach you about their world. For me, it was my first time being out of the house and enjoying myself after having surgery, and I was so ready for the journey.
(Mild spoilers for The Matrix are contained in this article, so if you haven’t seen it, or haven’t seen it lately, go watch it now. I mean, how can you exist in the world and understand what other people talk about without having seen it?)
Feeling Like a Human Copper Top
During the first surgery of the two I would have, my colon and most of my rectum were removed (I have a bit of rectum left, which is often referred to as a rectal stump) and a new rectum was created out of the last part of my small intestine (which is called the terminal ileum). An ileostomy was placed, which means that a piece of my small intestine was pulled through an opening in my abdomen (which is called a stoma). I wore an appliance (lots of people call it a bag but I always called it an appliance) over my stoma to catch stool. I emptied out my appliance of stool whenever necessary, usually several times a day. My second surgery would not be until June of 1999, which is when my ileostomy was “reversed.” My small intestine was once again made into a contiguous tube from my stomach to my little rectal stump, and I had bowel movements out of my bottom again.
When I woke up in recovery from my first surgery, my eyes hurt and itched. They told me not to touch them. They told me other things too but I don’t remember most of it. At some point my husband (fiancé at the time) was allowed in to see me and I remember him also telling me not to rub my eyes. I had tubes and wires connected to me. Some would be removed during recovery but most of them stayed with me after being transferred to a room where I stayed for 5 days until I was healed enough to go home.
Answering the Phone
In the theater, watching The Matrix, I had the most bizarre experience. After being jolted out of his virtual reality life, Neo wakes up in the real world, naked, connected to a bunch of tubes and wires with a nefarious looking machine floating in front of his face. In the process of the machines discovering he is awake and no longer plugged into the matrix (what was a simulation but what he thought was real life), the tubes are unceremoniously (forcefully, painfully) removed from his body.
In that moment, I relived the feeling of the removal of the drainage tubes from my body after my first surgery.
Those tubes were long. I knew they were there, of course, they made it hard to move and to sleep, but I had no idea how deep they were in my body. When the nurse removed a tube, I marveled at how much plastic was in my body without my being aware of it. I could cope with the pain, I could cope with waking up with a stoma, I could cope with all the interpersonal drama and emotional fallout that came along with losing my colon. But that drain being removed was the thing that broke me. It’s been 20 years now as of this writing, and I can still remember the feeling. It makes my skin crawl.
After seeing Neo lose his many tubes and wires in such a horrible fashion, I had to leave the crowded theater and narrowly avoid being sick in the bathroom. I pulled myself together, emptied my appliance, and went back in for the rest of the movie.
Following the White Rabbit
Later, Neo has to cope with the other challenges of having never really “used” his body. His eyes hurt. I imagine his entire body hurts. Things were done to him while he was anesthetized and he’ll never know what they all were but he knows they caused harm to his body. The abuse he suffered, unknowingly, was invasive and intimate. On top of that, he has the grief that came along with learning the truth about his universe and he now has to learn how to live with a group of people who are similarly emotionally damaged.
In 1999, the j-pouch surgery had already been in use for many years, but I did not have my surgery done at an IBD center. I had my surgeries at my local hospital with an amazing team led by my incredible surgeon. They told me as much as they could, of course, about the nuts and bolts of what would happen to my body, but they couldn’t tell me everything. There were many, many unknowns because there just wasn’t any data available. I was the first of my ulcerative colitis friends to undergo the surgery, so I didn’t have anyone who could share their lived experience with me. I trusted my team, I knew they had my back, and we went on this journey together.
Watching Neo be confused throughout the story as he leaves the matrix and understands his new (real) body, copes with his new universe, and learns to trust those around him, hit close to the bone for me at the time. I had little frame of reference for what my life would look like after my surgeries. I didn’t know if I would be able to go back to work, get married as we’d planned, have children as we’d hoped, and live a life with more quality and substance.
Seeing the Code
I would need to find my new normal again. One of many times I would need to do so over the course of my disease journey. I did find it, and it was certainly better than my old normal, in so many ways. Some people might consider having an ileostomy to be a tragedy and view it as giving up. My ileostomy, however, gave me new life. A way to wean off prednisone, which was ruining my body, stop going to the bathroom 20+ times a day, and spiking fevers all night and waking up in a cold sweat. When it came time for my reversal surgery, I seriously thought about keeping the ileostomy. I felt so good, so why would I subject myself to more surgery?
Of course, I went through with the second surgery: my j-pouch was already created and healed and ready for use and it would make no sense to not have the reversal. But at that point I knew that if having a stoma were my new normal for the rest of my life, I would be just fine. My surgeries were a resounding success and I’ve had 20 good years with my j-pouch, with the full expectation of another 20 to come.
By the end of The Matrix, Neo is flying, something we see no other characters do in that universe. It’s a hopeful ending and one with which I can identify. Finally free of everything that was shackling him, he can become what he was meant to be. It’s a bit spiritual for my overdeveloped sense of practicality, but the similarities to living with an immune-mediated disease are not lost on me. The disease never leaves us, but it goes through changes, as do we, and the key to it all is acknowledging and taking control of our circumstances.
People with IBD live hard lives but we are also extraordinarily resilient. We are some of the best people you are ever going to know because we’ve lived through trauma, isolation, pain, embarrassment, and stigma, only to come out the other side better for it. I wouldn’t wish IBD on anyone and if I could take a pill to get rid of it, I certainly would, but there’s no denying that it shapes us, as well as those who are close to us. I’ve learned over these 20 years with my j-pouch that when people living with IBD have the right support structure—helping us grow into our true potential—we can also fly.