Enjoy the First Two Chapters of A Life in Too Many Margins by S. E. Thomson
Prologue
Day 9,997 of pain. Week twelve of being told that this specific issue is all in my head. Hour seven of staring at the beige hospital blanket that has exactly three blood spatters on it. Why does every hospital blanket ever have at least one bloodstain on it? It’s not reassuring.
I'm in a hospital gown that ties like it's afraid of commitment and strapped to a heart monitor that won't shut up every time I, gods forbid, breathe irregularly for even a moment. Which is funny, considering breathing irregularly is the reason I am here. That, and getting ignored by a deeply underpaid parade of doctors with clipboards and God complexes.
Plot twist: this time, as of five minutes ago, they finally believe me. Sort of. Or rather, they believe the fifth scan, which revealed that I am full of blood. That grey section on the scan is supposed to be black, and that means I’m screwed.
“Omental infarction,” they said.
You can look it up. I’ll give you a moment. It is when part of your omentum (that weird sheet of fat-wrapped membrane that hangs out in your abdomen like an internal security blanket for your intestines) rips. It just gives up on you, usually from a lack of blood flow, trauma, or a really dramatic mood swing.
It's rare. Like “medical trivia game final question,” rare. Like “it took 15 or so doctors over three months to even think of it as a possibility,” rare, because “that just doesn’t happen to people.”
Unless, of course, you have Ehlers-Danlos Syndrome. In which case, your tissue is about as reliable as toilet paper in a rainstorm. So, of course, my omentum would go full Shakespeare and collapse in on itself while everyone else thought I was faking a tummy ache. Rad.
I’ve been hurting; searing, screaming, can't sit up, can't breathe, hurting. The kind where you feel like your insides are trying to defect from your body and your torso is going to explode from how full it feels. The kind where you start to think, “Huh, maybe death wouldn't be so bad, especially if it means I don’t have to explain myself to another urgent care doctor squinting at my chart like it's a Sudoku puzzle."
Every ER trip until now has been a speed run of dismissal:
CT #1: "Nothing there. Try a hot pad and rest."
CT #2: "Have you tried not being anxious about the pain? That’s probably what’s causing the pain."
That makes zero sense.
CT #3: "Looks clear. You are just constipated. Take some Miralax."
ER Visit #4 (my personal favorite): "We think it’s just gas. Also, your blood pressure is fine, so you can't be in that much pain."
Newsflash: You can be bleeding internally and still have normal vitals. Especially if your body is so used to hiding trauma, it’s like a trash panda hoarding garbage under a back porch.
Three months ago, I started to feel like something was wrong. Not my usual, everyday “EDS, WTF? WHY ARE YOU LIKE THIS?!” wrong. I mean wrong as in "there’s an alien poking its claws inside my abdomen" wrong. It started as a weird, sharp ache right under where my pants sit. I thought maybe my pants were too tight, or maybe I pulled something trying to reach the peanut butter jar on the top shelf. Hey, it happens when you’re short.
Then it started getting worse. I’d bend over and feel like I was being stabbed with a corkscrew. Every breath made it feel like my ribs were grinding into something squishy.
Laughing? Forget it. Coughing? Let’s black out and have a spontaneous nap. I have allergies that make me cough, too, so that was especially fun.
I tried to wait it out. I’m used to random pain flare-ups. EDS is like living with a thousand tiny structural failures happening in slow motion. Sometimes your wrist dislocates while brushing your teeth. Sometimes your knee forgets which way it bends. And sure, sometimes your elbow forgets to be an elbow. But this felt... deeper.
I started looking up things online that I shouldn't have. Appendix? Nope. Gallbladder? No. Kidney stones? Wrong place. Cancer, hmmmm…
I went to the ER. Again. They scanned. Again. Said maybe I had a muscle strain. Asked if I had anxiety. Then offered me Ativan. For the record, I have anxiety because no one ever believes me.
As usual, after being a mystery for too long, I started to convince myself: maybe I am delusional. Maybe I’m just not tough enough. Maybe this is normal, and I’m just a dramatic disabled person with a low pain tolerance and a flair for hyperbole.
I called my cousin. She told me to rub some Vicks on it. Ah, yes, the Latino cure-all.
Then, finally, this week, after months of suffering, self-doubt, and slow disintegration, I got a doctor who knew what the hell they were looking at.
I cannot describe the way I cried. Not because I was scared of bleeding to death, but from the relief of being believed. The validation that no, I am not delusional; the pain is real. She took one look at my chart, listened to me (radical concept), ran a new scan, and found the bleeding. In the gray.
"You have an omental infarction," she said, blinking at the screen. "We need to monitor you closely. I’m going to admit you."
“What the heck is a momental in fart shun?” I asked.
She stared at me, “O-men-tal-in-farc-tion” she sounded out as if speaking to a child, not in a condescending way.
“They don’t happen to normal people, so it was easily missed.”
“Normal. Yeah. Well, that’s something I’m not, so that makes sense,” I replied. Easily missed was an understatement.
So now I'm on a cardiac monitor, my hemoglobin is dropping like a bassline by Tool, and they keep checking to make sure I’m not bleeding out or throwing clots. They can’t do anything about it unless it gets worse, so the current plan is to watch and wait. I haven’t slept in about 29 hours because the pain keeps ratcheting up every time I move more than a few inches, and I’m so hungry, but the thought of food makes me want to cry. No food in case I need surgery.
Also, no one in this entire facility seems to know how to manage pain in someone who is autistic with a high pain tolerance and connective tissue as durable as microwave popcorn bag seams.
Bonus: They can’t even give me ibuprofen since I’ve had gastric surgery and am not allowed to. Probably also because it thins the blood.
They still don’t appreciate my humor either; it's disappointing. I’m the king of offbeat similes, and they just don’t get me. When they asked how I was feeling last night, I said, "Like I swallowed a cactus and then lost a knife fight with it while it was on the way out,” so they wrote down "tenderness" with side-eye.
They keep bringing me Jell-O. I have named it Gary. Gary is the only one who understands me.
The nurse just walked by and asked me how I’m doing again. I said, “I feel like a damp grocery bag full of bees.” She paraphrased,
“Uncomfortable, got it. How about I put down a 7?” as she wrote it on the chart, without waiting for my begrudging nod.
They gave me paper, but I’m using a handy-dandy notebook I keep in my hospital bag—the bag I keep pre-packed at home for emergency room visits; I’m that much of a frequent flyer.
I don’t know if this is going to be coherent. It might not even be legible, but I’ve been in this body a long time, and I’ve seen too much to let it go unrecorded.
I’ve racked up over $9.8 million over 22 years, trying to stay alive and suffer less pain. I’ve cried in more waiting rooms than I’ve been to social events. My joints pop like bubble wrap, and my soul feels like a rental car. I was born with a nervous system that reads the world like it’s on fire, and somehow I have made a life out of that.
“You’re so strong,” people tell me. I’ll admit that, sure, I am, but I’m also really, really tired.
I very often don’t know what the point is. It’s all just so hard. Just everything feels too hard.
I suppose I have never been one to stop looking for the answers to the big stuff, though. I have found a lot of answers along the way, but I don’t always know the right questions.
Hi. I’m David.
My omentum is dead, but I am not.
Yet.
This Wasn't My Idea
I was not supposed to be an American.
I was born on a rainy Tuesday, during a family vacation in the 1980s. Nothing says “relaxation” like a visit to expansive flatlands and swamps during the sweltering, humid autumn months and the slow grind of cultural collision. It was meant to be a break; instead, I was born, unpredictable and inconvenient. As is my brand.
That pretty much set the tone for my life.
At a roadside hospital off I-95, which felt like sweat-soaked, microwaved regret, I became the first US-born person on either side of my family. A limited-edition passport glitch wrapped in a pink hospital blanket, screaming my lungs out as if I knew what was coming.
They had known the due date was near, but they had imagined there was time. My parents had been told by a confident, and incorrect, doctor with a vague ultrasound and a habit of gesturing at shadows, that they were having a boy in two months.
That declaration had triggered a full-scale operation for my 20-something mother: she picked a name, bought the onesies (navy blue), and imagined a life full of sports, success, and masculine competence. She had the birthing plan, the packed bag, the laminated folder full of doctors’ business cards, and a little plastic rosary looped around a jar of Vicks VapoRub. She made all the plans for three weeks from the date they would have returned home from vacation and figured they would be back in plenty of time.
Instead, they found themselves inside a roadside hospital that smelled like bleach, overcooked peas, and the lingering disappointment of forgotten travelers. It wasn’t a bad hospital; it was just the kind of hospital where people got stitches after theme park accidents, not the kind where families expected to accidentally acquire a U.S. citizen.
So that is how I entered the world, to the sounds of Ronald Reagan on the hospital waiting room TV, Total Eclipse of the Heart playing softly from the nurses’ radio, and my mother screaming something in Spanish that roughly translated to "This child better be just like his brother" (a standard I would be held to well into my forties).
Surprise, there I was, screaming like I’d already seen a preview of my future with a desire to change the channel.
Did you catch the part about the pink blanket earlier?
“It’s a girl!” the doctor proclaimed.
It was like a balloon popped. Whatever joy my mother had been rehearsing for the sweet baby boy’s birth had vanished. The story she told later was always the same: “They told me it was a boy.” She had been swindled. It would be taken out on me later, as if I had made a last-minute decision to personally betray her uterus.
I never stood a chance.
***
I don’t know every detail that happened in that delivery room, but I’ve always imagined that the deflation was immediate and total. If Mom could have sued that ultrasound doctor, I bet she would have.
My British father believed in stoicism, shortbread, and saying “I’m fine” when he very much was not. My mother, Puerto Rican, believed in God, gossip, and correcting everyone’s behavior… loudly.
Together, they shared only three things: a commitment to traditional gender roles, alcohol addiction, and absolutely no idea how to raise the secretly neurodivergent, disabled, queer chaos demon they’d just been handed.
Sometimes I wonder what would have happened if that ultrasound doctor hadn’t said anything at all, if she’d walked into that delivery room without expectation. Maybe my mother would’ve held me differently. Perhaps she wouldn’t have looked past me, searching for the boy she’d been promised. Or maybe I wouldn’t exist.
The twist? I am a boy.
She just didn’t get the timing right.
***
I was hungry for rhythm, for voice, for cadence, for something to hold onto in the sensory hurricane of being alive.
I have seen pictures from that time: a tiny, squinty newborn with dark, dramatic eyebrows, already looking mildly annoyed to be here. My mother claims I “glared with purpose” by day three. My father, ever the optimist, said it was probably gas.
On my first night home, I wouldn’t sleep unless there was noise. When the house got too quiet, I would start crying. Not a soft baby cry. A full-bodied, furious, dramatic scream.
As a toddler, I had been handed over to the glowing babysitter known as the television. One evening, while my mother was desperately trying to make dinner with one hand and not lose her mind, she plopped me in front of the TV, and I immediately went silent, like someone had yanked my batteries out.
That was it; the decision was made. The TV would raise me now. Talking heads, sitcom laugh tracks, overly dramatic heroic monologues. All of it seeped into my undeveloped brain and settled in.
Before I could walk, I was masking. Mimicking the character on the screen. Before I could understand the rules of the world, I was learning to bend myself into shapes other people liked better, because that’s what avoided getting into trouble: raised voices and spankings. Yet somehow, I would find moments to still be entirely myself. Aggravating my family by being so different, but just “good” enough not to get smacked.
I didn’t speak a word until I was four, and nobody asked any questions; they were too relieved to have a mute kid who wasn’t demanding or screaming. When I did finally start talking, it was mostly in rerun quotes and misplaced sarcasm. Naturally.
It isn’t a great origin story, but it is mine. Most of my life was not overcoming hardship with a plucky grin and a good attitude; it was just moments: some beautiful, some tragic, all important to my story, and I have been told many times to write them down because people I have met along the way have often found that they make them feel less alone to hear them.
My being born was an accidental story.
This one’s on purpose.