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Disability & Star Wars

Yesterday was Star Wars day (and also my father’s birthday. Happy Birthday, Dadison!) Along with May the Fourth came the premier episode of the new animated series The Bad Batch. Outside of the fact that I misread the title every time, I gave the series next to no attention before yesterday. Then, I saw an announcement poster, and was immediately amazed. I scrambled to Disney+ to watch the first episode right away:

The Bad Batch is about disability.

It isn’t even veiled. The name The Bad Batch” is meant to allude to the general bad-assery of this troop of renegade clone troopers, but is most directly referring to the fact that these clones are “genetically defective.”

For those less familiar with the Star Wars universe–or perhaps you, like my Dad, often joke that the last time you saw a Star Wars movie was when the original premiered in theaters–let’s talk clones.

In the decades before the original trilogy, we generally follow the story of Anakin Skywalker, Luke Skywalker’s father who eventually becomes Darth Vader.

Do I even NEED to say *SPOILER ALERT* for that one?? For what it’s worth, this piece will be riddled with small Bad Batch and Clone Wars spoilers. But, only the first episode has been released as of me writing this, so I truly cannot spoil all too much.

During the time in which Anakin Skywalker is developing his Jedi skills, and struggling to navigate emotions he is told are ill-suited to the life of a Jedi, the Republic is locked in an ongoing war with a group of Separatists. The Republic consists of representatives from a variety of planets, with Emperor Sheev Palpatine at the helm. The Separatists consist of a variety of generally sketchy individuals, with a number of various sketchier “bosses” leading various charges, and with the exceedingly ugly Darth Sidious at the helm. The Republic is using an army of genetically cloned soldiers. The Separatists are using an army of droids. The Jedi fight as knights on behalf of the Republic. This is the period known as The Clone Wars.

Again, is it even a spoiler to remind us that Sidious and Palpatine are the same person? He’s footing the bill of both sides of The Clone Wars to destabilize the Republic, that he might more easily take control and establish a Galactic Empire in their wake. This is exactly what happens, and is exactly where The Bad Batch picks up.

The show’s protagonists are a group of genetically defective clones. Clones are meant to be genetically identical to the original clone candidate: Jango Fett. They all generally look alike, speak alike, and bear the same militaristic aptitude of Fett, if only generally differentiated by various colored uniforms and sick hairstyles. Except… not these clones, Clone Force 99, “The Bad Batch.” Each clone in Force 99 has some sort of physical or cognitive divergence from the original clone model.

Hunter: The leader. His only variation appears to be a marking that covers half of his face. It seems to be a tattoo of half a skull, the symbol of Clone Force 99, though it may be functioning to hide some sort of burn or birthmark.

Wrecker: The “gentle giant.” He is physically larger and appears to be blind in one eye, with a large spiderweb scar across the same side of his bald head. It is unclear if these physical differences were sustained from birth or whether they were the result of an injury. He is uncharacteristically strong and inclined towards physical brutality. He maintains some sort of cognitive disability. He is the Lennie to Hunter’s George (and the likeness to Of Mice and Men is clearly intentional: Wrecker’s most prized possession is a stuffed plush bunny named Lula. If you’ll recall, Steinbeck’s Lennie was led to imagine being on a bunny farm, as he was calmed down by the thought of stroking something small and soft.)

Crosshair: The sniper. He is significantly more gaunt than a standard clone, with a tattoo of a crosshair over his dominant eye. He is rigid, obedient, and cold.

Tech: The nerd. He is more gaunt than a typical clone as well, wears glasses, and functions as a sort of human C3PO for the group. It will be interesting to see whether, in future episodes, the narrative leans into the typical trope of “has lots of knowledge but misses major social clues,” often used in film to suggest an Autism Spectrum Disorder.

Echo: The “reg.” Echo is a cyborg clone. Having sustained a number of injuries in battle, Echo displays signs of albinism and is an amputee. He is called a “reg” because, unlike the other four, he was born a genetically normate clone. He has become disabled, rather than having been born that way. It would seem that his disabilities are relatively new, as the audience sees Echo deal begrudgingly with his limitations, apparently traumatized and sometimes embarrassed. Echo is important, and we’ll return to him very shortly.

So wait, are the clones (with Echo being the exception) of Clone Force 99 really disabled? Judging by the language used to describe them, it would certainly seem this way. They are described as genetically abnormal, and they maintain numerous physical differences that ostracize them from their “reg” peers and leave them struggling to engage according to normalized social cues.

However, returning to the double meaning of the show’s title, the other thing that distinguishes them from their peers is their effectiveness. They are outliers with a unique skill set, sent on unique missions and operating under a different set of rules, some externally imposed and others self-imposed. Their genetic differences give them exceptional utility despite social exclusion.

And that’s because they were designed that way.

Clone Force 99 were intentionally bred to be genetically abnormal. They didn’t happen to be disabled when they were born. They were genetically manipulated with an intentional, utilitarian outcome.

The stakes are raised when Admiral Tarkin arrives and observes the performance of Clone Force 99. He makes his opinions on clones very clear: The Empire no longer needs them, and in any case, they are by virtue of being clones, genetically inferior to other humans. “Reg” clones have all been “programmed” to some degree with decreased decision-making, to enhance their ability to follow orders. However, Clone Force 99’s unique skill set and supposed immunity from the cognitive programming strikes Tarkin as unexpectedly useful in their divergence from traditional clone tactics. Tarkin inquires whether or not these sorts of intentional genetic manipulations can be replicated, but with order-following forcibly enhanced as well to increase aggression.

So I could have started this blog post a different way:

The Bad Batch is about eugenics.

As such, it is still unclear to me whether or not we should consider Clone Force 99 disabled, even if the show is about genetic disability. Which makes the title of the show a bit misleading, yeah? A “bad batch” calls to mind a situationally defective batch of product. Something to be tossed out or ignored, like data or eggs.

This is not the reality of Clone Force 99. According to the performance standards of clone troopers and the Kaminoans who produced them, Clone Force 99 are not “bad” at all! They are very, very good. They are designer clones.

If we want to truly engage with a “defective clone product,” that was accidentally, congenitally disabled, then we must step back into The Bad Batch‘s series’ predecessor: The Clone Wars animated series.

I have been sitting on a post about The Clone Wars for quite some time, but haven’t been able to bring myself to write it. Which is part of the reason that my stomach leapt into my throat when I saw yesterday’s ads for The Bad Batch, and why I was on the edge of my seat for my entire viewing of the first episode.

Clone Force 99 is not the first introduction we have to genetically abnormal clones.

Clone 99 is.

In Episode 1 of Season 3 of The Clone Wars, “Clone Cadets,” the audience follows the training of a new squad of clones called Domino. Echo (member #5 of “the bad batch”) is a member of this earlier squad. As Domino trains and struggles to work together as a team, they engage with a clone called 99. 99 is described as genetically “malformed” and “defective.” He appears and speaks in a way reminiscent of the physically and cognitively disabled. His skin is wrinkled and discolored, with one droopy eye. He has a hunched back and walks with a limp. He is deemed unfit for combat. He works as a janitor.

He is characterized as wise, hopeful, interested, interpersonal, and ultimately, inspiring. As Domino pushes back against teamwork and relationship, 99 teaches them how to care for and work with each other. Perhaps unsurprisingly, he becomes the linchpin to the final battle at the end of Episode 2, “ARC Troopers”, saving the day, and sacrificing his life. He is made an honorary member of Domino Squad, receiving accolades in death. “We lost a true soldier. He really was one of us.”

I am teary as I type it, for the same reason I avoided writing the post I’d wanted to write about 99 for almost a full year. It was deeply triggering to watch. I haven’t watched The Clone Wars since.

99’s story follows the arc so many pieces of fiction do: The cognitively disabled person is underestimated, neglected, ostracized, but tugs at the heartstrings of the audience as he or she proves themselves both thoughtful and worthy. These sorts of characters almost always end up dying at the conclusion of their narrative, a “necessary sacrifice” that is meant to call to our minds the senselessness of war. And yet, it is also a “reasonable” death meant to keep us placated. None of the main, non-disabled characters would ever die in such a way. Disabled side characters exist to invoke the gravity of the situation, without causing any “real” harm to the core of the story. It all hinges on the suspicion that they probably would’ve died anyway, are somehow closer to death than non-disabled persons, and somehow more suitable to it. It is “inspiration porn” in the clearest sense.

So lest any viewers of The Bad Batch come away thinking Star Wars is veering into new territory, know this: The Star Wars universe already has a disabled clone in 99. It is after him that Clone Troop 99, “the bad batch” itself, is named.

In fact: the title of the whole show, The Bad Batch, comes from a line of dialogue in “Clone Cadets.” One of Domino’s members, Hevy, tells 99 that the reason the team cannot seem to work together is that they are a “bad batch” of “failures.” Here, what defines a “bad batch” is an inability to work together. In this episode, the “real” defective clones are those who do not see themselves as brothers in relationship to one another, contrasted with the “apparent” defective clone 99 who is literally genetically deviant but has a better sense of the brotherhood relationship than any of them. This is, again, very different from the sense of a “bad batch” that we get from the show of the same name.

It is interesting then that of all the Clone Force 99 members, Echo is the most clearly physically disabled. That he, who knew 99 in-person, is the one who carries on that legacy of truly readable disability in his body. However, in my mind, it is Wrecker who appears most akin to 99 narratively. I am already bracing for him to die.

Star Wars has dealt with explicit disability before in two instances that I can recall:

First, Luke’s amputated arm at the end of Episode V. His injury is immediately rectified by a sleek prosthetic limb. No harm, no foul.

Second, the blind Force-believer (and, arguably, user) Chirrut Imwe from Rogue One. While his blindness contributes to a number of humorous interactions and scenes, he is ultimately uninhibited by his disability. In fact, in the conclusion of the film, with the again arguable assistance of the Force, he is able to miraculously achieve a feat that turns the tides of the battle before succumbing to his death. It is, again, a death that is used to deeply move the audience towards sadness. I knew the moment he appeared onscreen that he would not survive. Perhaps fortunately, the story of Rogue One does not single him out like The Clone Wars does 99.

It is important to note here the connection between a disabled person and a heightened sense of spirituality. This is also a very common trope in media depicting disabled persons, as well as in religious communities in our own real world. It is how we in Christian spaces have been taught to interpret Jesus Christ’s healing miracles against the backdrop of the Gospel of John 9: 1-3…

“Now as Jesus passed by He saw a man blind from birth. His disciples asked Him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ Jesus answered, ‘Neither this man nor his parents sinned; it is so that the works of God might be made visible through him.'” (NASB)

Now to be sure, associating disabled persons with unique spiritual abilities or favor with God is certainly better than associating disabled persons with sin. And, to be sure, Christ does indeed favor the marginalized, including the disabled, in particular ways (namely, in the attention he gives, to use the brilliant theological proffering of my friend and classmate Rebecca MacMaster.) As such, we can indeed learn something about community and Christlike, reciprocal relationship by spending time among people on the margins.

However, these views can also easily slip into inspiration porn again. We can start viewing the purpose of disabled people as being to teach us something about God, love, relationship, holiness, etc. (Sound like 99, anyone?) Disabled persons are human individuals in their own right, with their own desires, goals, skills, dislikes, and relationships with both other persons and God.

This is, again, why narratives like 99’s are so harmful: His character clearly served the sole purpose of teaching the main characters something about love. We must start to see disabled persons as main characters in their own right.

Views about spiritual and religious favor or power also encourage the opinion that the disability is “special,” when in reality, disability is supremely normal. All societies contain disabled persons, even if the responses to disability is different. All people will experience disabling conditions at some point in their lives, even if its the privileged disabling experience of old age. I shudder to think of what became of other genetically malformed clones; the Kaminoans admit of Clone Force 99 in episode one: “Five are all that remain.”

We should see that, across these Star Wars installments, disability is viewed as an ultimately useful impediment narratively. However, it is those who experience cognitive disabilities who fall prey to the most harmful of tropes. This is consistent with various other kinds of media, as well as various narratives in our society writ-large. Physical disabilities are generally viewed as more acceptable than cognitive ones. During one hospital scene, Clone Force 99 are informed by a medical droid that they are “genetically defective.” Tech is quick to reassure them, “we’re more deviant than defective.” Oh phew, crisis averted. In other words: “we’re not as bad as 99 was, because we are obviously more normative and useful.”

In the very next breath of the same scene, Clone Force 99 is made aware of Admiral Tarkin’s presence, to the chagrin of Echo, whose wartime injuries and mechanical enhancements had something to do with Tarkin. The “bad batch” is encouraged to do everything they can to appease the Admiral, lest they wind up “turned into that,” pointing back at Echo. Even though they are all on the same team, and Echo himself is not genetically deviant like the rest of them are, his teammates still treat his disabilities as markedly worse than theirs because their physical bodies are intact.

Above all, clones assert that they are far superior to droids. This is, in part, why Echo is singled out: Tech explicitly says “you are more machine than man, at this point.” We know how machines are treated by clones. We also know that droids are given personalities, memories, and feelings in the Star Wars universe. They’re not quite human, but they’re just animalistic enough to tug at our heartstrings when they die. I hope you see the similarities between these narrative functions and the narratives of cognitively disabled characters. This is not to speak to beliefs about human relationship to animals, but to call out the ways the cognitively disabled are often described in wild, animalistic, non-rational, even non-human terms. (*nods directly and aggressively to Alasdair MacIntyre’s Dependent Rational Animals*)

Because of the very same discriminate preferences–physical disabilities are better than cognitive ones, invisible ones more manageable than visible ones, persons with aids and prosthesis are proportionally less human than those with full use of all their limbs and organs– various laws and medical protections in our own country were written first in terms of physical accessibility. We still, today, see “access” as the leading call-to-arms for disability advocacy movements. It is vital that we see that “access” does very little to…

1). Meet the needs of cognitively disabled persons

2). Address the stigma faced by all disabled persons

In other words: a ramp, a lift, or a hearing aid won’t make people talk to you more respectfully. Access only goes so far.

In many cases, access is really just a tool for assimilation. The goal of many physical aids is to enable the body to operate normatively, that a person might come to participate more fully in social positions. Now, many disabled persons may desire aids. But some may not. Regardless, as consumers of media and participants in a society that contains disabled individuals, we must come to see that we continue to orient disabled persons towards utility. Getting and keeping jobs, participating “normally” in school, family, and Church, etc. These circumstances contain inherent dignity, and they are deeply worth protecting. However, they continue to trick us into viewing the disabled along a spectrum of usefulness and productivity. How much can that person do or understand? How old are they mentally, that I might appropriately label their behaviors for my own comfort? How could they be of use in “their own special way”?

Having this knowledge or demanding these skills of disabled persons should change absolutely nothing about the way they are viewed and treated.

It strikes me that this is the statement The Bad Batch has made thus far: These clones are genetically imperfect, BUT they are exceedingly useful.

This is not to say that exploring genetically divergent clones should be avoided. On the contrary: This is so, so important.

For one thing, it is vital that we see genetic divergence in every world we construct, fictional or real. Period.

I have felt such unrectified anger since watching 99’s The Clone Wars episodes. How dare Star Wars, a completely fictitious universe full of every imaginable type of creature, handle *literal* human genetic variants so stereotypically? I view The Bad Batch as an opportunity to expand this absolutely essential exploration, with the full knowledge that they might not do it perfectly. At least they’re doing it more.

For another, exploring genetically divergent clones makes way for examination into the ethics of cloning, questions of where in a person one’s personality and identity lies, and the bounds of science. Since meeting 99, I have long wondered about the bounds of genetic defectiveness of clones. Most interestingly: Could the clones’ sex chromosomes be genetically divergent? Could we ever see an intersex or female clone? (I’m thrilled to *spoil* that The Bad Batch gives us an answer: Yes!)

Depending on where the story goes from here, this could have amazing implications for the representation of intersex folks. Especially for those who believe transgender identities and the existence of a spectrum of gender all violate natural laws, increased discussion and representation of the genetically intersex can show that this is scientifically untrue. People are in fact born with divergent–in some cases, both!–sets of sex chromosomes and characteristics.

However, Star Wars is walking a very dangerous line on topics of eugenics and survival of the fittest. In one scene of The Bad Batch, the audience gets a glimpse of young Saw Gerrera, who is still reeling from Order 66 and the transition from Republic to Empire. In response to Clone Force 99 questioning their own allegiance to the Empire, Gerrera asserts that everyone must “adapt and survive, or die…” While this can certainly be interpreted as a realistic, political call to managing one’s expectations in order to stay alive, it is also explicitly reminiscent of arguments for natural selection and survival of the fittest, topics that explicitly implicate genetic variance.

In short: The Bad Batch will need to be careful not to implicitly or explicitly make the argument that only through intentional genetic manipulation can a clone survive. With the Jedi gone, clones are some of the only humans the audience can see themselves in and follow narratively. What are we being told about our own genetics if this is the case? It is certainly worth considering.

Like I said, there has only been one episode thus far. I greatly look forward to seeing where the show goes from here. I am hopeful that this might be the beginning of greater, more explicit exploration of disabled protagonists in Disney’s media.

It is worth considering how superhero stories are often implicitly about topics of disability and bodily variance (I think the X-Men stories handle these topics most explicitly), but that the Marvel Cinematic Universe has largely avoided these conversations. Perhaps a topic for another post?

I hope you watch The Bad Batch. But I implore you to watch Season 3 Episodes 1 and 2 of The Clone Wars first. It seems profoundly unjust not to include 99 himself in the story of Clone Force 99. Luckily, you can find both in the same place, as they’re both on Disney+.

May the Force be With You, Always– Madison

(Okay…say it back: “And with your Spirit.”)

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Categories
health PCOS

Trust Your Gut

My Mom raised me to trust my gut. If something was wrong, I felt it deep in what she called my “conscience.” People I know now tell me it’s “Catholic guilt,” but it’s not. I didn’t grow up in a household where God was frightening and mad at me. I didn’t grow up going to Confession. I grew up with a Mom who regularly reminded me that my body would tell me–through an upset stomach, anxious feelings, a knot in my chest, poor sleep or bad dreams–that something was wrong.

My body on birth control was telling me something was wrong. So I got off the birth control pill. Problem solved, right?

Wrong. Very, very wrong.

I assumed that, because I was forcibly cycling my body through hormones every month, that it would continue cycling using the hormones it naturally produced. Maybe that would be the case if the hormones you were supplementing with were bioidentical (in other words, structurally similar or identical to hormones the body naturally creates.) Hormonal birth control is not. The “cycle” I experienced on the Pill was not a cycle at all. So, when I got off of it, my body. freaked. out.

I went a month anxiously anticipating a period. In fact, I expected my severe blood loss to come back like it had when I was prompted to get on the Pill in the first place. I also (secretly) hoped the weight I’d gained would fall off as quickly and effortlessly as I’d gained it. It feels silly, and deeply sad, to say it aloud.

I didn’t have a period. What I did have was stomach pain. I first noticed it after eating. At the same 30 minute interval, after eating dinner every night, a specific spot in my upper abdomen felt a sudden, sharp stab. It was accompanied by nausea, cramping, severe bloating and dizziness. Suddenly, I had the need to drink water and lie down after every dinner.

Given that I was living in intentional religious community, this was my first experience of the difficulty of explaining chronic illness symptoms to loved ones and coworkers. I had been struggling in community for months, retreating to my room after work as the most introverted in the house, butting heads with a cranky Brother, and grieving the death of a community loved one. Now, I couldn’t bring myself to sit through night prayer without doubling over in discomfort. I suspected that my community members questioned whether I was simply moody and resisting community involvement.

After four or five days of experiencing this nightly discomfort, I began experiencing it in the middle of the day. At the time, I was teaching middle school religion in the afternoons post-lunch. I would eat, go to teach, and start feeling sick by half-way through my first class. I immediately confided in my mentor teacher, who suspected I was experiencing a stress-induced ulcer. I was told the same things the internet told me: To get more rest and try to reduce my stress.

As a full-time, volunteer middle school teacher living in a community in which I felt unsafe, grieving and lonely… how? Besides taking my time to attend to my post-meal pain, there was not much else I could do, and I didn’t have much spare time. I needed to be present in community, and I also needed to be present at our short-staffed school. Despite these anxieties, and not having access to a regular physician, I finally bucked up the courage to pursue medical care, and went to a local Tulsa urgent care clinic.

I was examined and given an abdominal x-ray. I informed the doctor about my recent shift off of birth control, and asked if perhaps my digestive issues had anything to do with that? The doctor assured me, no. Looking at my x-ray results, I was extremely constipated. She encouraged me to drink lots of water, keep taking Miralax, if that didn’t work take Metamucil, and if THAT didn’t work, Citric Acid. After that, if I still experienced the stabbing pain, I was probably experiencing intestinal irritation from being backed up and was told to take Zantac and Pepto-Bismol.

I won’t burden you with the details of my bowel movement failures. Let’s just say: I ended up having to take all 3 laxatives and they worked as expected, yet none of my symptoms actually changed. In fact, my pain worsened into unpredictable bouts of the most excruciating pain I’ve ever experienced in my life. Eating or drinking anything–or not eating or drinking anything–could leave me keeled over on the toilet, screaming in pain. Like being stabbed from the inside out, unable to move, unable to eat, I went three days self-medicating with antacids, milk, mashed potatoes, crackers, Pedialyte, and stool softeners, praying that whatever was inside me would just get out.

The doctor at the Urgent Care clinic had told me if things got worse that I may have an intestinal blockage. This scared me. I hadn’t eaten anything nonedible. If I had a blockage, it was either some sort of bump or twist from overeating, or it was some sort of growth. Colon cancer does not run in my family, but it is becoming increasingly common among young people. After three days of excruciating pain, trying to stay present to my students and my community, I went to the Emergency Room. Twice.

The first visit, they did triage and then sent me to the dangerously backed-up waiting room. There was a young girl in a hospital bed that had been rolled into the waiting room, sweating profusely, keeled over in pain, wailing about having been waiting for 13 hours. I looked at Brother Richard, horrified. We couldn’t wait that long. So we left.

I didn’t sleep a wink that night, slumped over the toilet bawling. We went back to the ER the next morning. This time, it was far less busy, and I was able to be seen right away. They performed another X-ray and CAT scan. They examined my colon, liver, appendix, and spleen. They also tested my blood for infection. They noticed no inflammation or blockages in any of my organs, and I came back free of infection. But I was heartbroken: No answers. And they said there was nothing else they could do for me except refer me to a GI.

I took the referral and went two days later. The GI took a stool sample, which came back with trace evidence of a stomach bacterial infection. He schedule me for an endoscopy, a procedure similar to a colonoscopy where your digestive tract is examined (just from the top-down instead of bottom-up… literally.) I would be given anesthesia and the procedure would take a couple hours as they both inserted a scope down into my intestines and took a small excision sample. It was and is still the only surgical procedure I’ve had done outside of wisdom teeth. I was scared. Brother Richard went with me, and let me sing a loopy song about how excited I was to be able to eat chicken nuggets after my procedure. I hadn’t eaten solid food in two weeks.

Again, my heart breaks to say it. The doctor said the scope came back inconclusive. I showed evidence of having recently healed from a number of ulcers, but I had no active ulcers. The excision, again, showed trace evidence of a stomach bacterial infection. But, the doctor said there wasn’t enough evidence to be concerned. He could prescribe me antibiotics, but he didn’t think I needed them. He said I could control my pain through diet, exercise, and stress-management.

I was distraught. Wasn’t that what I was doing? I wasn’t eating ANYTHING! I couldn’t go to work, I couldn’t eat, I couldn’t sleep. All I could think of was that whatever I was doing to manage it, I wasn’t doing enough. Not to mention I had just shelled out money for urgent care, not one but two ER visits, a GI appointment, and now an inconclusive procedure. I guess I just had to keep suffering until I was better. No chicken nuggets.

My pain did not improve. I still could not eat. Guy came to be with me for a few days, as I prepared to go back to teaching for the final two weeks of the school year. I couldn’t imagine not seeing my students again and closing out the year. He shopped with me for baby food, in the hopes that I could safely stomach the vile puree. At the time, he and I were 8 months into long distance between Oklahoma and Alberta, Canada. He was the only person who came to visit me during my time of illness.

Just before my last week of my year of service, I traveled to Chicago for our volunteer program’s debriefing weekend. I still could hardly eat, and when I did eat, I was still left doubled over in pain and horribly nauseous. After every meal, I had to take time in my room instead of immediately transitioning to the next of the weekend’s activities. I couldn’t connect with any of my fellow volunteers from around the country (and given that I’d spent a year being pretty relentlessly bullied and ostracized by a good portion of them for college-old rumors, none of them particularly cared what I was experiencing anyway. Again, the volunteer environment I was in left me ripe for judgment and suspicion. She’s probably just looking for attention.)

Finally, on my last day of debriefing, pieces clicked into place for my boss. She paused, pulled me aside and said, “Wait. Do you have H. Pylori?”

“Yeah, exactly.”

“Why aren’t you on antibiotics?!”

“The doctor said I didn’t need them, and could manage with diet and rest.”

She was seething as she told me her story of having an H. Pylori infection in high school. It was excruciating. All she could stomach was Gatorade. The only thing that helped was antibiotics.

In fact, with a stomach infection like mine, all of the things I had been told to do by the urgent care doctor had actually made all of my symptoms worse. H. Pylori feeds off of fibrous material, like mashed potatoes, baby food, and Metamucil. Antacids may have reduced acid caused by the ulcerous bacteria, but it was also coated my stomach lining and allowing the bacteria to dig even deeper.

I was floored. “Why would the doctor tell me I don’t need antibiotics then?”

“Because he sounds like an asshole male doctor who devalues women’s pain and has never had it himself.”

It was my first time experiencing such explicit bias against women and women’s pain. This bias is so rampant, and is 3x higher against women of color.

Because I was going home to California in a week, I waited and scheduled an appointment with my primary care physician in which I directly requested antibiotics after presenting a folder full of the findings from the endoscopy.

Within 3 days of taking them, I felt better. I no longer had that stabbing pain the middle of my abdomen, and I could eat food without immediately triggering an onslaught of excruciating pain.

If there’s anything to be learnt here it’s this: H. Pylori is the cause of ulcers 90% of the time. Stress can make it worse, but the root cause is typically bacterial infection. You cannot fight bacteria without antibiotics. You can get lucky and maybe it goes away, but to actively fight an invasive bacteria, you need an antibacterial. Your pain is valid. You deserve the relief trusted medication provides.

But even after antibiotics, I still felt extremely nauseous. Eating still tired me out like no other activity. I still had to go lie down after every meal. I still had extreme bloating.

Now I’m going to pause here and yell at diet culture for a minute: 9 times out of 10, when we see or hear complaints about bloating, it’s that it makes your stomach bigger and your pants not fit. Nobody talks about the fact that bloating can be extremely, extremely painful. Again, when we talk about the problems facing women’s digestive health, so much of it surrounds weight gain that the solutions often focus solely on weight loss, completely sanitizing the reality of pain. Hear me now, bloated women: You deserve to not be bloated, not because it makes you larger, but because it. hurts. very. much. And you deserve to not be in pain.

When I followed-up with my primary care physician after finishing my round of antibiotics, she asked if gallbladder problems run in my family.

Yep, they do. Not a single Chastain over the age of 21 has a working gallbladder, actually.

My doctor sent me to get a HIDA scan, in which you lie on a table and are injected with a dye that lights up your gallbladder. You then consume a substance that tells your body to mimic its response to food in need of digestion. As you lie on the table for 45 minutes, the large machine above you monitors the release of the dye from your gallbladder. For those who have never given any thought to their gallbladder, this is what the gallbladder does: While your liver always and everywhere stores and releases bile to help break down your food, your gallbladder (which is connected to your liver) stores extra bile to be released when you eat food that needs extra help breaking down. Think greasy food, processed food, fatty food, leafy greens, red meat, and highly acidic foods. Your body also relies on bile from your gallbladder if you eat while drinking, as alcohol naturally impairs the liver.

The physical results from the scan were immediate: I broke out in sweats, my stomach bloated immediately, I felt nauseous and dizzy. The data was just as telling: Over the course of 45 minutes, my gallbladder had only released 4% of its contents. My gallbladder wasn’t working.

Now, gallbladder failure can have a number of causes: Gallstones, inflammation (cholecystitis), or… it can simply stop working. This is called “lazy gallbladder,” and it’s what runs in my family. No inflammation, no stones, just… a broken organ.

The nurse at the hospital who conducted my scan was extremely comforting and understanding. She let me cry tears of relief at finally having an answer and walked me through my options. The most important thing is managing my diet by avoiding the foods I listed above. If I don’t, and I continuously tell my body I need extra bile it can’t provide, my liver will continue to send extra bile to my gallbladder to store, not understanding that my gallbladder isn’t releasing any. This can cause a back-up, which can then lead to gallstones or inflammation. This is what leads to people getting their gallbladders removed alltogether.

This choice is different for everyone. The HIDA nurse herself told me she has a broken gallbladder but hadn’t had hers removed. My dad and many of his family members have had theirs removed, but a couple family members still have theirs. A conversation I had with my dad was really helpful: “Once you get an organ out, you can’t get it put back in,” he said, “and truthfully, getting it out doesn’t actually save you from digestive problems, it just gives you new ones.” Meaning, if you take out the organ that regulates bile release, when you eat those problem foods I named, instead of being backed up with not enough bile, your liver overproduces bile, which leads to you digesting too quickly. Which leads to problems like chronic diarrhea and lack of nutrient absorption. Gallbladder problems are like being between a rock and a hard place: There’s no perfect solution.

To this day, I am still managing my gallbladder failure. Up until about a year ago, I still experienced regular symptoms. If I ate too much food, I often ended up vomiting because my body couldn’t digest it all. There was a time I couldn’t eat if I was also drinking alcohol for the same reason (definitely doesn’t help that “pub food” is pretty much exclusively foods on that list of “no-go’s.”) The first time Guy ever saw me puke was after my former roommate’s graduation party. I had eaten pizza and drank a lot of wine (it was hosted at an Italian restaurant! What are you gonna do??) I was FaceTiming Guy afterwards– we were still long-distance–and with absolutely zero warning, I projectile vomited all over myself, my bed, and the phone I was using to call him. It was… gross. And again, I had to explain my mad dash to the bathroom not only to my roommate, but to her entire family that was there for her graduation. I am sure there was some small part of them that wondered, like my fellow volunteers and my intentional community the year before, what on Earth was wrong with me and if it wasn’t in some part an attention grab. I was extremely embarrassed.

Learning from these moments, here are my “gallbladder management” habits:

  • I don’t eat tomatoes, pork, or cauliflower. Basically ever.
  • I eat beef, broccoli, and brussel sprouts very rarely.
  • If I experience gallbladder pain (which to me, feels like a pinching or stabbing feeling up under my right ribcage) I take a hot shower or bath, apply a hot compress, take a multivitamin, and drink a ton of water. In my early days I occasionally utilized castor oil packs, to some success.
  • If I experience a gallbladder attack (which is when I experience massive bloating, cramping, nausea, and vomiting due to overeating or constipation), all I can do is drink a ton of water, sit on the toilet with a cold compress on my forehead and neck, and wait for it to pass. Gallbladder attacks are really scary, and the immense pain often sends me back to my weeks in Tulsa alone and afraid of what was happening in my body. Now, with the help of counseling, I’m learning to try and extend my body pride and compassion. It knows something is wrong. It knows it cannot process all the food inside of it. It wants it all out. And it is doing a good job, its exact job, to try and fix the problem.

I suspect that, with the work I’ve done on managing my diet, my gallbladder is functioning more than it used to. I can eat more processed foods and healthy fat without experiencing pain, and of all of my symptoms I’ve noticed the most marked difference in my bloating. I’m really proud of myself.

That being said, figuring out what to do and not to do took years of trial and error. After over a month in Tulsa of not being able to eat at all, I had developed a disordered relationship to food: I was scared of eating. Not because I was scared of gaining weight, but because I was scared of messing up my stomach and causing myself pain. I didn’t trust myself, neither my food choices nor my body. I was anxious any time I went out to eat with friends. I got really into cooking, if only because I was forced to try a new combination of foods every night to see how my body responded. I didn’t trust doctors to tell me the truth, either. Not after my experience in Tulsa.

I am still healing. I am still learning to trust my body’s ability to digest, and my mind in making smart choices. Most importantly, I still really struggle with beating myself up during a flare-up. I often blame myself, that if I hadn’t eaten X, drank Y, or stressed out about Z, I wouldn’t feel this way. I often also catastrophize: Meaning, I often jump to a worst case scenario. “This is going to make me vomit,” or “This is going to send me back to the hospital.” Thanks to counseling, I can now identify these as trauma responses. I am working on them.

But Madison, this is a series on PCOS. What on Earth does ANY of this have to do with your period or hormones?

Remember when I asked the Urgent Care doctor if any of this had to do with getting off the birth control pill and she said no?

Ha. Haha.

I should’ve trusted my gut.

I could go on and on explaining the science, but I would rather direct you to the person who pioneered it: Dr. Jolene Brighten. Dr. Brighten is a leader in women’s menstrual irregularities and has coined the term “Post-Birth Control Syndrome.” Again, thanks to my counselor (who I hope you’re starting to see is a key player along my health journey), I was referred to Dr. Brighten after sharing the story I’ve just shared with you.

Here’s the gist of what I have learned: When you take medication, much of it is filtered through your liver. Especially when that medication is hormonal in nature, your liver works overtime processing the foreign hormones. We know that there are many frequently-prescribed drugs currently on the market that pose risks to liver function for this very reason. Birth control, we are actively learning, is one of them. And what threatens the liver, threatens the gallbladder. For those genetically pre-disposed, birth control can lead to early liver or gallbladder stress and even failure.

What’s more, hormonal birth control has been linked to decreased immune function and irritation of the digestive tract. Meaning? A person on hormonal birth control, like many other medications, is at increased risk of infection.

With your body on such high alert, when its primary concern of processing these hormones and forcing a non-cycle cycle is taken away and you get off birth control, it typically takes a very long time for your period to come back. Not only does your body have to relearn how to naturally produce and cycle all your natural hormones, but it also has to address the outlying issues of infection, inflammation, organ failure, stomach dysbiosis, and more. Sound familiar?

Now, one of the things I appreciate about Dr. Brighten is that she is not outright anti-Pill. She repeatedly affirms that not only is it sometimes truly the best medical option for a woman, but that beyond anything else it is extremely difficult for a woman to avoid birth control in the first place, since it is prescribed as the band-aid for so many women’s health issues. But, Dr. Brighten frequently says, it is important to get to root causes of hormonal imbalance before applying the Pill as a band-aid solution AND there are many things it is important for women to do while on the Pill to support the body.

This should be at the heart of Catholic theological and ethical discussions of birth control: Has the woman had ample time and resources made available for her to explore the root cause of her symptoms? Is her primary concern that of her health and not of contraception? Has she been educated in the ways she can support her health and fertility while on the Pill? Health and safety should always be held in priority above “a slippery slope to enabling promiscuity.” If women fear taking the Pill, it should be because they are fully informed about the real and severe medical risks, not because their Church has made them feel guilty for pursuing something viewed as heightening sexual temptation. In fact, the latter actually enables distrust of one’s body: If you are constantly being told by religious or moral figures that you can’t trust your body not to lead you astray, then you are not going to trust your gut when it’s telling you something is wrong. Your body is good, it knows what to do. Listen to it.

For those who seem suspicious, I get it. Dr. Brighten has a line of supplements, a book, her own series of courses you can pay to take, and she hosts a yearly conference on hormonal health. I have paid for one of these courses, read her book, taken the supplements, and frequently refer back to her hundreds of free articles. Let me assure you, I am not on any sort of payroll. Nor do I necessarily agree with the popular, online influencer strategy of putting life-changing information and helpful supplementation behind steep paywalls. This is why I urge you, if any of my experiences sound like yours, to read her articles (with a grain of salt.) Read her book (with a grain of salt. AND request it from your local library: In this house, we support local communities and the environment and always go to the library first!) I also recommend the Period Repair Manual by Lara Briden, which alongside Dr. Brighten’s book, is the other leading text exploring contemporary science about menstrual health. Pursue the free knowledge first before diving deeper.

Most importantly, talk to your doctor (but take their advice with a grain of salt, too.) Medical practices you find in the doctor’s office, unless your doctor is affiliated with a research institution or is reading up on contemporary research, averages 17 years behind results from current studies. Just because your doctor doesn’t know about a study doesn’t make the study false. A good doctor will explore it with you. In the same breath, just because a study says something is true doesn’t mean it is. Scientific discoveries must be repeatable to be valid AND if they are to be just and equitable, they need to be repeatable across a wider demographic than the usual suspects. In short: If Black women weren’t consulted, there’s more work to be done.

I also urge you: Listen to your body. Trust your gut. No matter what any professional says, not everything will work for you. I couldn’t follow Dr. Brighten’s course to a T, because her food plans did not account for gallbladder failure, and many of the ingredients were on that “difficult to digest” list. When my primary care physician finally prescribed me antibiotics, she also suggested I get back on the birth control Pill. In Tulsa, I needed fewer antacids. In college, I needed to explore why I was bleeding before I jumped to birth control to make the bleeding stop. My body was showing me, all along, that something was not right. But we shouldn’t beat ourselves up for not listening the first, second, third, or thirtieth time. If anything, from this story it should be clear that whether you’re the patient or the medical professional, it’s all basically (and extremely unfairly and unfortunately) a guessing game when it comes to women’s health until this all becomes prioritized, common knowledge.

So that’s the end of my health past, but I am still surmounting a health present. For the next and final installment of this series, I’m going to briefly explain how I got from Post-Birth Control Syndrome (PBCS) to Poly-Cystic Ovarian Syndrome (PCOS) and identifying as chronically ill, and then present you with my totalizing list of things I’ve tried, broken down into categories of things that…

  1. Definitely helped
  2. Maybe helped? Maybe it was a placebo effect?
  3. Didn’t help at all

My email and DM’s on Instagram are always open. As you may be able to infer from my digestive ailments, nothing (polite) grosses me out anymore. Maybe don’t send me unsolicited toilet bowl pics, but if you have a question, experience, or concern, I love to hear them and walk with you through whatever you’re experiencing.

Big love–Madison

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