I was in a McDonald’s bathroom somewhere in Iowa.
I was exhausted from a weekend full of family time and walking
around the Minnesota State Fair.
My dad and I had left a few hours before dawn and began the long drive back home.
As soon as we got on the road, I instantly fell back asleep,
holding the old stuffed animal dog I got as a Christmas gift when I was 8.
We had stopped at McDonald’s to get breakfast and pee.
I was washing my hands when I noticed how glaringly puffy my eyes were.
What is going on?
I thought as I poked the puffy skin around my eyes, taking in this unfamiliar sight.
I walked away from the mirror to leave,
only to return seconds later to stare at this unusual occurrence once more.
I chalked it up to not enough sleep and too much driving and walking
within a short period of time (something I’m not known to do).
This conclusion reassured me enough to leave the restroom without panicking.
I can’t remember if I asked my dad if he noticed anything different.
If I did, he probably just told me the same thing I told myself: it’s nothing.
We got back in the car and continued our long journey home.
As we were merging back onto the highway, I checked my puffy eyes
once again through the camera app on my phone.
In natural light, they were still puffy.
It’s fine. It’s fine. I just need more sleep.
Oh, the stories we tell ourselves in the moment so we don’t obsessively wonder
what bad things could be happening.
There’s a split in my reality
every morning and night.
When what I see doubles
into this hallucination like state,
my brain is confused. My eyes
don’t work together for longer than
twelve hours a day. Individually,
they’re fine. Left is down
and right is up. If I cover one,
my vision is single and up
or single and down.
Whatever I’m looking at
will move to a different space
without me moving my head.
I try my best to fight it until
my eyes are no longer cooperating
and I’m forced to go to bed.
"We will just wait," my doctor reassures me at the end of another long visit.
The limited resources I have to aid my symptoms
cause more damage than improvement.
So I accept what I cannot change
and wait for change to occur.
I just got my vision back after months of fuzziness,
oh what it's like to see clearly, such a wonderful thing.
With new glasses, my vision is close to what it was
before it drifted away without saying goodbye.
I accept this knowing my vision will likely shift
once again within the next few months.
As I wait for time to go by, I thank modern medicine
for relieving me from my personal hell for the moment.
These obstacles I face have no solution or cure,
the only thing I have on my side is time.
In time, this disease will pass thru my body
and one day it will become a memory.
There's no telling when that will happen,
every person who has this is completely different.
One year, two years, will eventually
blend together in my depths of my mind.
My mother waits longer than she had anticipated for me to walk back thru the door I entered half an hour ago. Whenever she’s left in the waiting room, nothing good comes from it.
The first time, I lost three wrong teeth. I was twelve. “You’re old enough to go back by yourself,” she told me. When I was in the chair, the dentist told me they were taking out my expander, something I wasn’t aware of. But I was too young to be my only advocate. I tried to speak up but I was told I was incorrect. I didn’t question it and assumed everyone in the room was on my side.
This time, I learned yet another thing is wrong with my eyes. I’m twenty-five. When the eye doctor, whom I had never met before, came in to talk to me and do more testing, I felt like an adult since my mom didn’t come back with me like she always does, which felt kind of strange.
I like a second pair of ears when it comes to doctor situations. Casual check ups at dermatologists and dentists, I can do on my own. But when it comes to appointments where some part of my body is being looked at more seriously, such as lungs, eyes, or thyroid, I prefer to have someone else in the room to hear what the doctor is saying, someone who has my best interest at heart.
But there I was, sitting in an examination room, taking tests and speaking with new doctors and nurses, being my own advocate. While waiting in-between tests, without a phone or book (I left them with my mom), I reflect on what she said when I left. “You can do this on your own,” she told me. This surprised me. I had presumed she would come back with me like she always does. Later, I would learn that she had assumed I would be back out after testing, ten minutes tops.
I have been to enough of these doctors in the last couple of months to know that I get placed in an exam room after testing. I guess I am old enough to do this on my own. Why wouldn’t I be? I was able to communicate just fine. It just feels weird not to have my mom back here. It feels even weirder with nothing to do to pass the time. I stare at the screen in the mirror that I can’t read. Letters appear fuzzy. My eyes hate me.
The nurse takes me to another room for additional imaging and I begin to plot a plan to get my water bottle and maybe get my mom back here with me. As the nurse is getting the test set up, I ask if when we’re finished, I can go and get my water from my mom. She says that’s perfectly fine and I stare at a blinding light four times because the first two times didn’t get a good look at my eyes.
When I go and grab my water bottle, my mom asks me what’s going on, I’ve been gone for thirty minute. I say I’ve been having tests done and motion her to come with me. I’m surprised she’s been wondering where I’ve been. Though, whatever the miscommunication was quickly gets pushed aside as I introduce my mom to the eye doctor and we’re told I have Keratoconus. As soon as we’re told why this is, the possible treatments, and the process of monitoring the disease, we’re sent on our way.
“Why does something bad always happen when you go back by yourself?” My mom jokes with me as we leave. I can’t help but laugh myself. It’s ironic how these things happen when my mom sends me off own my own. And it’s surreal to be told yet another thing is wrong with my eyes. To be honest, I’m still processing all of it.