When I had surgery to remove my colon (which is called a colectomy) and place an ostomy, I knew exactly what was happening. I knew I would wake up with a loop ileostomy. It was the first step in 2-step j-pouch surgery to treat my ulcerative colitis.
My colon was falling apart, full of inflammation and pseudopolyps (non-cancerous polyps that can occur with IBD). I had a few months to prepare for surgery, including meeting with my surgeon and an enterostomal (ET) nurse. When I woke up with a stoma and an ostomy appliance, it was not a surprise.
Even so, that doesn’t mean there weren’t challenges in accepting life, even the brief time I had one, with an ostomy. It’s one thing to know what’s going to happen: to have it explained to you and to talk to others who have experienced it. It’s quite another to go through it yourself.
This article contains spoilers for The Bad Batch, The Mandalorian, The Book of Boba Fett, and Star Wars in general. If you’ve not seen Chapter 15 of The Mandalorian and Chapter 4 of Boba Fett, you might want to avoid reading this article until you watch them. If you don’t watch these shows, and don’t plan to, that’s fine, you can keep reading, but it’s going to make it harder for us to be friends.
Star Wars has always been a favorite of mine. I’m old enough to have seen A New Hope on its original run. Before the movies were on video, they were only on TV about once a year. At some point in college, we taped them from broadcast cable so we could watch them whenever we wanted (and fast forward through the commercials).
My husband and I saw the re-releases of the original series in the theater in the 90s and were there for all the releases of the prequels and the sequels. I even have a Star Wars tattoo. Anyway, you get the picture: I’m a nerd.
The explosion of Star Wars content over the past several years has felt like getting that first meal after a colonoscopy. Getting characters like Fennec Shand, from the recent TV shows The Bad Batch, The Mandalorian, and The Book of Boba Fett, has felt like getting the first meal of solid food after surgery.
“And If You Remember, I Don’t Miss”
Fennec Shand is a master assassin in the Star Wars universe. She’s a complicated character with motivations we don’t quite understand, but she doesn’t show much in the way of emotions. Her job (if being an assassin can be called a job) is dangerous, even though she’s good at it. Eventually, however, she has a bad day at work and is shot in the stomach and left for dead.
Of course, because Star Wars is a space opera, and we never saw the body, she’s found in the desert, near death, by Boba Fett. Boba Fett is a bounty hunter we thought was dead (but again: no body). Fett takes Shand to a “body modification parlor.” In the Star Wars universe, people are able to live after having surgery to repair mortal injuries, the most famous of them being Darth Vader.
“More machine than man,” is how Jedi Master Obi-Wan Kenobi describes Darth Vader. What we don’t know is the intricacies of body modification and how people are kept alive despite serious injuries or losing organs and limbs.
We don’t get a lot more clarity from The Book of Boba Fett, either. We see Fett pay what must be a considerable amount of money to a surgeon (?) in the body modification clinic. The surgeon saves Shand by replacing much, or maybe all, of her abdominal organs with machinery.
The next thing we see, Shand is waking up, and Fett tells her that he’s saved her life by obtaining care for her through body modification.
There doesn’t seem to be a need for much surgical recovery time, or even a sterile environment, because Shand is again out in the desert. She’s told how she is still alive and she looks down at her abdomen, discovering the machinery there
What happens here is so brief, it’s almost an afterthought, but it spoke so clearly to me about the experience of having abdominal surgeries. It was written, acted, and filmed yet it seemed rushed; not given any room to breathe. But it had an effect on me.
We see a flicker of emotion across her face. She briefly looks concerned, then horrified, and appears to make an effort to put the situation — and her feelings about it — to the side. After all, she’s got bigger problems: being vulnerable and in debt to a bounty hunter. And in the middle of the desert with only Fett and his bantha for company.
“It’s Okay To Break The Rules Sometimes”
Body modification is a common theme in science fiction. In the Dune universe, where machines or computers are not allowed because they’ve had a robot apocalypse, the modifications can also be organic in nature. There’s an underground market for machinery too, of course, because even though it’s illegal, people still want bionic eyes and organs.
Star Trek also has body modification stories, the most famous of which being the Borg society, which uses machinery to force aliens and humans to become part of a collective (a process called “assimilation”).
What we don’t see a lot of in these stories (with the exception being Star Trek) is the emotional toll of the modifications. As a matter of fact, we don’t see much of this in popular culture at all. Waking up to find yourself alive, but with a vastly different reality than the one you envisioned for yourself. In the real world, the change could come in the form of a stoma, but it could also be having an organ transplant or losing a limb.
I knew I was having ostomy surgery. I knew I was having reconnection surgery. It took an emotional toll even though I had an idea, at least intellectually, of what was coming. Waking up to find you’ve lost body parts when you didn’t expect to do so, however, is an experience I don’t have, and which will affect people in a different way.
However you feel about your IBD, the surgeries you’ve had, or living with an ostomy, those feelings are valid. Shand appears to get past the situation of waking up with a bionic stomach really quickly, but that’s not everyone’s experience. Nor do I think it’s even remotely common in the real world.
Her story isn’t finished yet but I felt it was a missed opportunity on the part of the writers. It could have led to some nuance in the character and a way to speak to the community of people who have experienced trauma from medical interventions. (Hey, people with disabilities are Star Wars fans too.)
“The Galaxy Is A Dangerous Place To Be On Your Own”
Two things can be true: you can be grateful for an IBD treatment and you can also hate it. It would be preferable, I think, to come to some sort of an arrangement. A co-existence of sorts, because that might lead to a better quality of life. But how do we get there?
The journey might start with acknowledging the problem. Post-traumatic stress (PTS) is found in a “significant proportion” of people with IBD. Having ileostomy surgery or j-pouch surgery — and being female — may make people even more susceptible to PTS. (Taft, et al. Inflamm Bowel Dis. 2019.)
Yet we are still not even talking much about this issue, let alone dealing with it. Have you ever been screened for PTS? Or offered any kind of mental health treatment or a referral to a psychologist?
I don’t have all the answers. In fact, I only have questions. But I do know that what we’ve been doing so far, which is pretty much nothing, isn’t working. People are sent off into their lives without any framework on how to reconcile their surgical experiences, put them into perspective, and integrate them into their lives.
On Star Trek, we saw Captain Jean-Luc Picard struggle with the aftermath of being kidnapped and altered by the Borg. It was a complicated, nuanced story arc that showed how even a successful and “healthy” person doesn’t just pick up and move on after having a traumatic experience. He had to learn how to recognize, acknowledge, and incorporate the trauma into his life.
And what about Fennec Shand? After her near-death experience, we see her move on and bounce right back into being the confident and deadly person she was before. We see her eat and drink. Scale buildings. Take down enemies. Is there an inner turmoil over her new machine parts? Is there a stigma in the Star Wars universe with having body modifications? We don’t yet know and maybe it won’t ever be addressed.
“Oh, Look, The Suns Are Coming Up”
What I do know is this: coming out of life-altering surgery without any emotional affect isn’t possible. I’m not sure why we see so many stories in science fiction about surgery and body modifications which have no exploration of the mental impact. Good science fiction, after all, is a great story that just so happens to take place in a different universe or time.
Science fiction is also a place where stories outside the mainstream go to be told. If we’re going to get into the idea of humans being surgically altered, we also need to understand — and show — how that affects them emotionally. We have some of the research on this already, even if scalable solutions aren’t yet available.
What we don’t have is a broader understanding, outside of the GI psychology universe, that people with IBD or other medical conditions might live with PTS or mental health changes as a result of the disease or its treatments. Good storytelling already gives us the opportunity to explore these themes and promote empathy.
What we need is writers and storytellers who are brave enough to take it on. What do you think: do you have such a story?
Taft TH, Bedell A, Craven MR, Guadagnoli L, Quinton S, Hanauer SB. Initial assessment of post-traumatic stress in a us cohort of inflammatory bowel disease patients. Inflamm Bowel Dis. 2019;25:1577-1585. doi:10.1093/ibd/izz032.