Betrayal? Befriend? I'm Beside Myself Here.
The brain body connection is pivotal - and when it works, it's great. But mostly I exist in moments and experiences on the other side of that line.
Just like most people, I lived in my body like normal for most of the first 20 years of my life. There were some red flags that in retrospect should’ve been further investigated - constant “nervous stomach’s,” intense migraines, relentless joint pain and frequent infections, but when I was younger, they were just considered regular childhood ailments - they’d get treated as one off’s, and then I’d keep going, moving on as if I hadn’t noticed anything that shouldn’t have been.
Spoiler: I noticed. But nobody else seemed to be concerned. So I assumed I should just do as I was told, double down and push through.
One day in September, 2009, I was four weeks into a new job and living in a brand new apartment in the city, and I found myself in and out of the bathroom at work so many times with pain that was making it hard to stand upright. I didn’t think about calling 9-1-1 or asking any of my new colleagues for help. I just told my manager I had to go home sick, and I took an uber to the closest emergency room.
That day opened a chapter that lasted 6.5 years - the journey to my diagnosis with Crohn’s disease (followed by several other autoimmune disease culprits) - which didn’t occur until January, 2016. During all of that time, I was experiencing life altering, life stopping pain, nausea, vomiting, and the rest of the host of GI symptoms. I was in and out of dozens of doctors offices, underwent at least that many tests and procedures, endured hundreds of blood draws and I kept hearing the same things…
“It’s all in your head”
“You’re suffering from anxiety. You need a psychiatrist.”
“It can’t possibly hurt that bad.”
“You’re just refusing to eat”
“You’re seeking attention”
"You’re embarrassing yourself”
At some point - it becomes nearly impossible to tune it out, or to stop hearing those things circle around my head. I was skin and bones, freezing all of the time, surviving on ensure and always 30 minutes away from the next emergency room trip or inpatient hospitalization.
And that, friends, was just really chapter one.
My battle with this body is now several books long, and looking back at the 15 years of medical mysteries, gaslighting, poor care and even lack of care - I ache for the version of me who couldn’t believe it might ever get better.
In the interim, I’ve physically navigated some of the worst pain that exists, when it actually is “that bad,” when it makes it impossible to breathe and all I can do is sob - and I’m not talking once, or twice, or even three times here.
In addition to the lengthy chapter of undiagnosed and misdiagnosed (and therefore, without treatment or with incorrect, ineffective treatment options), I lived for 6.5 years with ulcerations, inflammation and small perforations in my small intestines. This pain - it can come on with no warning, and go from 0-10 in about 5 minutes. This pain has had me lay down on public bathroom floors, dignity way out the window, wondering if I was actually just going to die right there.
11 months after being diagnosed with Crohn’s disease, I was finally diagnosed with Rheumatoid Arthritis, which again probably started in my childhood. Both conditions are currently managed with an IV infusion medication I will likely get every 5 weeks for the rest of my life, or, until it stops working.
Then, there was the night in the hospital that I was overdosed on medication due to a miscommunication between a resident and a nurse, and not only are there 36 hours I’ll never remember, but I know that I aspirated, or vomited into my lungs, preventing me from breathing, and I regained consciousness while intubated and on a ventilator alone in the ICU - not the room I had been in beforehand.
For a while, I collected health incidents - two broken feet, six months apart.
A gall bladder that stopped functioning, causing me to upheave everything consumed for months before they agreed to remove it.
A knee with calcified scar tissue that continually got caught in the tract, preventing me from bending and extending and requiring laproscopic surgery for removal.
The ovarian cyst that despite several rounds of medication only continued to grow, and required surgery for removal.
An intermission here was interesting, and required me to essentially diagnose myself, but with proper testing it was confirmed that due to constant and frequent steroid use during the above years, my body had stopped producing cortisol, requiring me to take it orally, twice daily, in order to keep my body upright and my pulse and blood pressure controlled. [Fainting wasn’t a good look for me.] That was when I was diagnosed with Adrenal Insufficiency.
Back to the one offs - a herniated disc in my back that ruptured, requiring semi-emergent repair and quite a painful and lengthy recovery.
Then - my stomach pushing up through my diaphragm, causing it to feel like shards of glass were lodged in my throat every-time I swallowed.
An interesting one here, where my GI surgeon actually identified an autonomic nervous system dysfunction, followed by a cardiology diagnosis of Inappropriate Sinus Tachycardia, and again, being on “fainting watch” for the rest of time.
A few months later there was the adrenal crisis, which started with a 105 degree fever and prevented me from speaking coherently, leading into the skull crushing migraines that came with the abscess in my brain from bacterial meningitis.
Then there was the rupturing of my fallopian tube and excessive internal bleeding that came along with it - that one required an ambulance ride and 2am emergency surgery to keep me alive. After it came a diagnosis of endometriosis, one that somehow was never identified during 7 years of infertility testing, pregnancies, miscarriages and losses.
There was fracturing the bones in my left foot four times in 18 months (which is SO MUCH TIME to spend in a walking cast) followed by a shit ton of testing and a diagnosis of Osteomalacia - or soft bones, and now requires a daily injection each morning to see if my body can literally stop breaking…
Oh, and then of course we can’t forget this whole thing with my knee - not just rupturing my ACL, but tearing every muscle, tendon and cartilage surrounding the kneecap structure, all in one swoop.
—
I list these all not for any other reason but to provide a complete picture spanning the breadth and depth of types and severities of pain I’ve experienced during my 20s and 30s. To be honest, I’ve spent more nights than I could ever track sleeping on the bathroom floor, downing pain medication and praying to something I don’t even believe in that there would just be a moment to exhale. I’ve at times spent days to weeks attached to PCA pumps in the hospital and on the strongest pain medication currently available, and many times, it’s not even enough. It’s not enough to put me to sleep or even to get me to rest. Other times it at least takes the edge off, but holy shit, I can tell you that just by writing this, all of my hairs on standing on end and I feel sort of like I could vomit. Recounting the physical pain I’ve experienced in my adult lifetime has been unfathomable - and yet, it’s all true, it all has occurred, and today, I’m still here to talk about it.
Beyond the hardest emotional failures my body has caused me, physically it’s led to a clearly significant amount of angst, anger, anxiety, fear, frustration, feelings (so many damn feelings), hurt, loss, pain, panic, turbulence, and ultimately always a short circuited pathway to the “kill switch” (ie: I can’t do this anymore). Even if I am able to work through the word betrayal, or the anger that has kept me lying in bed awake most nights, I’m afraid there will always be an element of fear. It’s not just “what if” - it’s “what if again, and again, and again.”
Maybe that’s the point of writing all of this - the idea of shifting my mindset from looking at this body and all of the times it’s betrayed me, to thinking about this body and perhaps the things it was trying to signal me instead. I understand the purpose of this mental transition, I really do, and I also recognize that in many ways that would give me the option and/or permission to have an entirely different and perhaps less caustic relationship between mind and body going forward - it just feels... sickening.
It feels terrifying.
It feels out of reach.
And in those statements I recognize that maybe I just need some more help with it.
You can call it pessimistic or glass half empty, but if really wrote about every ailment, every doctor I’ve seen and every appointment I’ve attended, every blood draw and stool sample I’ve endured, every specialist I’ve begged and every round of testing I prayed for answers, every late night waiting in the ER and everyday laying in a hospital bed for the last 15 years, you’d understand when I say I don’t trust this body.
I can’t trust this body.
I do not feel safe inside of this body.
I look at everything thats written above and I know that there have been times I’ve almost not survived the trauma this body has caused (endured). There are times I did survive, and for more than one reason wish that I hadn’t. The triggers are going to be there for me everytime certain things happen and I know that because I’ve lived with them this long. Every stabbing pain in my abdomen. Every thudding feeling in the back of my head. Everytime I turn white as a ghost, get clammy, and start to see stars. I know what happens next. I’ve already read those chapters.
But the thing is, I also know (call it a feeling, a premonition, a sign) that the next “thing” is likely already on it’s way down the pipeline. This body and I both know that with certainty - and not in the slightest because I want bad things to happen, or I’d like to test my trauma response reflexes to make sure they’re still strong, but because my hypervigilence only works if it’s focused on and prepared for the worst case scenarios. The ones in which I need to act. The ones in which I need to have a go bag ready. That I need to ask for a ride to the Emergency Room or call my friends over at the ambulance bay. This isn’t normal. But this is my normal - and I’d pretty much give anything to make it go away.
[Note: All photos are mine, taken in the past. I am currently writing this from the office in my home]