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celiac disease

I'm Cayla. This is My Story. Chapter 1


I'm Cayla. This is My Story. Chapter 1

My Mom describes this time- the time when my body started to shut down- the time when I was slowly dying- as sand running through her fingers. She still tears up talking about it. "I thought I was going to lose you", she says.

"Why do you want to talk about this Cayla? Lets talk about something else".

Which raises the question: Why do I want to talk about this?

A handful of years ago I found myself seeking help from a renowned Psychiatrist in the city. I was severely depressed; the lowest of my low. After learning my life history he then asked me if I thought I was a sad person- that if perhaps, I was born sad.

I said No.

I told him I had a happy heart; that after everything I had gone through, I still believed that I was joyful in my soul.

He told me he had seen hundreds of people come through his office who had experienced similar things to what I had experienced, yet very few answered the way I did.

"You're special" he told me.
"I mean that. Don't forget it".

His words buoyed me. They still do. Even as I type this I feel the resonance of his words.
I know I am now coming into a space where I need to begin to speak to what I have gone through.

So why do I want to talk about this?

Because it helps me step into my own power. It reminds me I am resilient.
I also want to talk about it because I want to be a lamplighter.
I want people to know they never walk alone.
We are all in this together.

My story will be told in however many Chapters it takes.

This is Chapter One.

I am lying on an examination table. I'm wearing size 00 jeans. Do you remember the store Sirens? That's where my jeans are from, because Sirens is the only place I can find that actually carries size 00 jeans.
I glance around a room I can describe only as being bland and distasteful, like the inside of a worn-out purse; everything around me seems muted and stained.
The light above the examination table is flickering across the top of my abdomen which is concave and exposed. I run my fingers across the red creases I have developed on my skin from where my hip bones have begun to forcefully jut through.
It hurts.

But, like much of the other hurt I have experienced,

I have simply gotten used to it.

I have lost count as to how many specialists I have seen up until this point. 15 maybe? 20? It doesn't matter. Everything is blurring together.
The only thing you need to know about this examination room and this examination table is that I slip out of my dissociation for one split second and cognizantly realize how frail I am while the doctor starts to yell at me. He raises his voice in a way I have not heard a medical professional do before. He throws his hands in the air.
"You look like you belong in a concentration camp". His statement is curt and lined with contempt, as if I am withholding important information from him.

"I can't help you".

A sharp feeling of angst tidal waves inside me, subsides, then disappears entirely. I gather my things, put my shoes on, walk out to the car in silence. My Mom follows.

We sit in the car staring at the windshield.

We have been here before.

However, for the first time since I began to fall ill, I watch my Mom completely unravel. She panics, then she too- starts yelling.
Everyone is fucking yelling.
It's the type of frantic anger that is rooted in the fear of watching your daughter become a shadow of who she used to be.

In the beginning it seemed to be stress induced. I was in my last year of high school and I was juggling a lot. I was on student council. I was acting in two plays. I was an honour roll student. On top of that, I was also applying to universities.

Well- this is what was happening on the surface.

I had experienced stomach aches my whole life but this year in particular they had begun to intensify in a way that was almost unbearable. The pain was sharp and sudden. It would come in waves and then linger. During these periods it hurt to move. It hurt to eat. The pain became as frequent as breathing. 
The evening I graduated everything culminated. I left mid-dinner, ran straight for the back of my Mom's car and curled into a ball clutching the sides of my body. I wanted to crawl out of my skin.

After that night the weight began to fall off. Rapidly.

I began University that Fall, 30 pounds less than what I was when I graduated highschool.

Now, we sit in the car staring at the windshield.
It is 2 years later.

No one has answers.

My hair is blonder, thinner, and it's falling out.
I've dropped courses, lost my period, lost friends.

My diet has changed significantly in order to try and figure out what food is causing the sickness,
but nothing seems to help. Everything I eat hurts me. I begin to associate intense pain with food in general so I just stop eating.
I drink Ensure in an attempt to keep my caloric intake high so I have enough strength to make it from one side of campus to the other.
Sometimes I take my hands and walk them across the wall while I move between lectures, because I can feel my legs on the brink of collapse. The last time I do this a woman rushes up to me.

"Are you ok?", she gasps. I'm too weak to respond.

I am a medical perplexity.
I remove my clothes for countless doctors so they can examine my bones, my frame, my skin. I repeat my story so many times it has become scripted. Emotionless.
They scan for Cancer, test for AIDS, tell me I am lying, tell me I am dying.

I sit in the car. I stare at the windshield.

Now, I hear everything but absorb nothing. It's a defense mechanism. I'm numb.
Every so often my mind actually grasps what is happening and I experience extreme panic. Yesterday, I stepped onto a scale.
It reads 78. I grab onto the towel rack as the room suddenly starts to swirl around me. My heart thumps so hard inside my chest it feels like my ribcage might shatter. Am I having a heart attack? Is it fear? I can't tell. I grab a towel, wrap it around my body, crawl into the kitchen and begin to frantically eat a bag of chips.
I eat the whole bag of chips.
Waterlogged, bloated, terrified, I crawl back onto the scale.
Something flips in my mind. I round the number up to 80.
It's fine, I tell myself.
You're fine.

But the truth is
I am disappearing.

I know how sick I am but it's not registering in the ways it should be.
I am living in the shallowest part of an ocean, forcefully trying to protect myself from what is happening at a deeper level.

We sit in the car staring at the windshield.

The best specialist in Toronto can't even help me.
I am trapped inside my body.

My Mom turns the car onto the highway.
We talk about the weather.