I'm typing as I go; please forgive typos and/or wonky syntax. And try to forgive me if halfway through it I delete and/or disappear. This story, this experience are still pretty raw.
I am no one. I am an authority on nothing.
I don't have a license to practice anything but driving.
Please never construe anything I ever say as medical, legal, or other advice.
I'm telling a story.
I wouldn't listen to me if I were you.
Y'all familiar w/the Adverse Childhood Experiences (ACE) Study? Published in 1998 & the basis for hundreds more pubs, which point to childhood trauma's impact across lifespan: the higher your "dose" of childhood trauma, the worse later outcomes tend to be
But also: physical health effects.
Survivors' RISK of diabetes, cancers, autoimmune dz, ischemic heart dz, many others seem to skyrocket w/exposure to trauma
Then I was raped.
Then some more trauma happened.
Then I ended up with a literal hole in my abdomen.
Do y'all know about toxic stress? It's where the fight, flight, freeze reflex is so chronically exposed to fear—literal danger—that it pretty much gives up.
Single dose of stress, then back to baseline, recovery
—Tolerable stress: death in family, a breakup, broken bone
Multiple, often overlapping doses, multiple stress responses, coming in waves—but ultimately, recovery
Multiple, overlapping doses w/o time or room for recovery. Your body becomes so habituated to real fear that it kind of glitches out. Even if you have a positive stress event—an exam—your body has no idea whether or not it's in danger
Think about the last time you had a dose of terror—almost hitting another car, for example. First, there's an overwhelming rush of adrenaline, then there's an emotional letdown.
It feels AWFUL.
But substance use wasn't my path. And not through any merit of my own. I was just damn lucky.
Knowing my history, a former therapist used to tell me, frequently, "There is no good reason you're sober."
There were plenty. But she was kind of right, too.
What if we called the police, she said. Obviously, they won't do anything, but you'll be able to tell them what happened when you were 12.
Tell them. Tell someone.
Be heard, she said.
So I called the police.
That was a literary technique known as foreshadowing.
Narrator: Our heroine truly had no idea what she was in for.
A detective called from a real-live SVU.
Guess when I called?
14 years, 8-ish months
They wrote letters.
He asked for medical records—all the years, all the pain written down on paper.
I signed releases.
He said he ended up with something like 5 boxes of records.
Stacks on stacks of my pain.
While he enlisted in the Marine Corps?
While he became a cop?
While he joined the US Border Patrol?
I'd been in emergency rooms. Hospital beds. Paying the price.
But the damage was done.
I'd been disbelieved so many times before him and so mistreated, he could have arrested my rapist on the spot and it wouldn't have healed me.
And when I realized that, I broke.
I woke up every day with a fullness—literal pain, right about midline, just below my xiphoid process.
I couldn't "tolerate volume." My stomach refused water. Food. Medication.
She injected botox into my pylorus in an attempt to "freeze" it open. I had a few days' relief before I started vomiting again.
You know what vomiting causes?
A plastic tube taped to your cheek but also hanging out of your mouth because you've vomited so hard it's come up
NJ tubes misplace themselves—coil back into the stomach.
Fine, I said.
I was tired.
I was so tired.
Seven years ago last Friday, I met the surgeon in the OR.
A g-tube, he said.
No, I said. A GJ.
(A g-tube only goes into the stomach—the GJ bypasses the stomach, like the NJ)
What? I asked—both confused and scared.
I'm not placing a GJ tube today, he said. You can have a g-tube or nothing.
But why would I go from NJ tubes to a g-tube?
Because, he said, "People in your demographic end up pulling them out anyway."
People in my demographic?
So I was sedated. The g-tube was placed.
I woke up immediately after in more pain than I've ever known. I was vomiting blood.
In recovery, I vomited more. More blood.
Normal, they said.
I took a cab home, vomiting blood into a basin.
That afternoon, I felt far more pain than my c-section; more pain than I've ever known.
If this is what healing feels like, I thought—I'd rather die.
"Why didn't they give you pain meds?" the attending asked.
"Babies have it done without pain meds."
"You're not a baby," the attending said, and ordered morphine.
I'll finish because I want to finish.
I want to finish, but I also want to assure you: it never ended.
I feel it now—right about midline, just below my xiphoid process.
I'll be back after the corner to finish the story. I want to.
Anniversaries are weird; the body knows one's coming long before you ever think to glance at a calendar.
My sweet friend @sambooklove texted Friday: Uh, don't think me impertinent—but are you near a trauma anniversary?
It was seven years to the day since the tube was placed.
The body remembers what the mind tries so desperately to forget.
And I knew that my neighbor, a toddler with a rare genetic disorder, had a "low-profile" g-tube "button."
And Google told me they made those for GJs.
So I advocated for myself, as I was learning to do—again, not by choice, necessity.
They don't make low-profile GJs, they said.
Yes they do, I said. And here's the model number.
They ordered the kit.
I was so excited.
Y'all, I had a tube hanging out of me.
This is foreshadowing, btw.
I woke up to the radiologist standing over me, drenched in sweat, swearing.
"It won't let me past," he muttered.
A wire, y'all. An actual, pokey wire.
Now imagine water. It didn't like water, either. Or food.
"No wonder you puke all the time," he said.
I liked him.
It was real.
He saw it. It was right there and it was real.
During the conversion from PEG-J to low-profile GJ, I was exposed to 76 minutes of fluoroscopy.
Seventy-six minutes of fluoro is ... it's a really damn long time.
Because ... trauma.
Wanna know what a body tries to do when you surgically insert a tube?
It tries to heal itself.
It grows "granulation tissue."
Wanna know how you treat granulation tissue?
You have to burn it off.
I went to interventional radiology to have a new tube placed.
Because they get gross. Or the balloon bursts. Or any number of other issues come up in between routine exchanges, and you go in again.
I didn't even use the damn thing.
Slowly, I became more tolerant of volume in my stomach and I slowly, slowly returned to taking water, food, medication by mouth.
But the doctors said, idk, let's kept it there.
Because 76 min is too long to use fluoro again
I had an exchange when I was ~13 weeks pregnant.
I was back in interventional radiology a week after I gave birth.
Why do you still have this? sometimes someone would ask.
76 minutes of fluoro to place it, I'd say.
Oh, they'd say.
Then let's keep it.
On 12/27/2016, my son and I were robbed in broad daylight of all his holiday gifts, our clothing, our luggage, my computer.
The thief wrought havoc everywhere.
I was stressed af. Some might even call traumatized.
I was traumatized.
Because it got worse. A lot worse.
On a Mon, I went to court (btw I found my thief; you're welcome, police) to see my suspect arraigned
The PA took me straight back.
It's infected as hell, he said. He showed me—it was infected as hell.
I need to take biopsies, he said.
The lidocaine never took.
I was never numb.
He took punch core biopsies of infected, angry, inflamed tissue and I felt every single thing.
YOU WERE SUPPOSED TO BE NUMB, he yelled.
SUPPOSED TO DOESN'T COUNT, I yelled.
He gave me antibiotics.
But they didn't work.
So he gave me more.
But they didn't work.
So his attending gave me just whatever else was left.
The biopsies were fine.
Seventy-six minutes, I said.
Yikes, he said.
Yeah, I said. I figure I'll need it for whatever cancer that'll end up causing anyway.
He didn't laugh.
Neither did I.
Irrigation and debridement.
Yeah, I figured that was coming, I said.
I went full-on vagal during the I&D.
Wait, let's pause: do we still remember? All of this? Every single bit?
Is because I had the gall to report my rape.
And I was believed
But 76 mins, I said.
Yeah but we have new tools. New methods. We could get it placed again if we needed to.
Ok, so can you do it today? I said. Because I was way the hell over the tube.
Get some supplies—you'll need to dress it for about three days until it closes, he said.
I scheduled the removal for the next week.
This is foreshadowing.
They were soaked through by the time I was in the parking lot.
You heal more slowly, he said. It might not be three days, but give it a week. It'll close.
Narrator: we'd all soon find out just how wrong he was.
But on the other, I had a hole. Just, you know, a gaping hole in me.
A literal hole. From just everything in the world to the inside of my stomach.
Have you ever heard of a fistulated bovine?
Look it up.
That was me.
I did give it a week.
Then I called. I said listen, everything I drink and a lot of what I eat comes out of this gaping hole in my abdomen. And I don't want to be a bother or anything, but could that just ... not happen?
Then the lidocaine didn't work. Again.
Y'all, I felt every single entry & exit of that needle. I felt the sutures. I felt everything.
I lay there, tears running down my hot face, shaking.
I'm so, so sorry, he said.
All the time.
I have a connective tissue disorder. The sutures "swam" through my skin like a hot knife on butter.
I had a toddler at home. On my own.
Do you know what's in your stomach?
Do you know what happens to skin when it's exposed to acid?
It burns. A lot.
We've got to get you in to wound care, they said.
We're not taking new patients, wound care said.
Must be nice, I said.
I'm on disability. I repeatedly spent the majority of an entire month's check on wound care supplies.
Plastics said: we're neither boarded nor willing to do full-thickness closures on anyone—but definitely not you.
I'll admit, this was fair: I have the connective tissue disorder—and hemophilia.
They said ok, so what we'll do is a lateral incision—I said wait wait wait, let me stop you right there w/a hearty fuck you sir, indeed.
I didn't really, but why would I have agreed to a lateral incision?
He couldn't climb in and out of his crib.
He couldn't climb in and out of the car.
I was in constant, excruciating, unthinkable pain.
But I was still having to manage somehow.
Sutures were never going to work.
Gastroenterology said they'd try.
And on Sept something-or-other, the 6th or 7th last year, nearly six years to the day after it was initially placed, the same damn surgeon who dared call me a demographic?
He closed the hole.
An endoscope deployed a "bear claw" clip and closes the fistula from inside.
Y'all, I don't know.
I don't know how to tie this up for y'all.
The fact is I still have a huge scar. I a literal, visible reminder of all I'll never know I lost. I have no idea what I missed out on as a child, adolescent, young adult.
I simply don't know.
I didn't know.
I really didn't.
I thought we were all in on some sick joke.
So what do we do with that knowledge?
I really don't know.
We could start by believing women.
He wrote the following:
When will we believe survivors?
The stats in Utah are 1 in 4 girls and 1 in 7 boys by age 18 will be victims of sex abuse.
Y'all, by the time I reported my rape, my body was already so habituated to toxic stress that it did only what it knew to do.
But when we talk about survival as a choice? When we talk about strength as something anyone can put on or display?
What the fuck am I supposed to think?
What the fuck is Dr. Blasey supposed to think?
Your own child?
Survival isn't some grand, beautiful, glorious state.
It's a hole in my abdomen.
It's your aunt's borderline personality disorder.
It's your cousin's substance use disorder.
It's getting through the best you can with what you know.
I say sometimes I'm still learning to become human.
But I know we don't fix a shameful discourse by perpetuating shame. By silencing survivors. By comparing.
Believe me—we know shame. We have enough.
The time to believe is now.