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.
When the clouds come
overhead in the afternoon,
remember that all days
cannot be sunshine and blue skies.
You can't expect perfection
when you know there will be rain.
It's okay, you can't hear all
the good news you want in one day.
When I started my blog a year ago, I didn’t expect to be dealing with the issues I have now. Last year, I was just diagnosed with Hashimoto’s and finishing up my degree in English. These last few months have been defined by my health, particularly my thyroid eye disease. It’s sad but true. Eyes are a huge part of everyone’s life and when they’re sick, it takes a tremendous toll on how one might move about their life.
Last week, I went on a cruise with my dad’s side of the family. While it was great to see other places and learn about different cultures, it’s also difficult to be in the Caribbean when I’m extremely light sensitive. I started the trip with some daily headaches and no real eye problems. But by mid week, I was having a lot of double vision and my eyes were finished with the sun. Trading headaches for burning eyes and double vision wasn’t ideal, to say the least.
Before this last week, I had a few weeks of minimal eye problems. Thyroid eye disease has its ups and downs, some times are better than others. The months before my brief plateau were brutal. A lot of irritation, swelling, and double vision. One thing after another happened. The weeks prior to the cruise, my eyes weren’t my main worry. I certainly had concerns about my eyes going into the trip and how they could react to travel. But they weren’t entirely on the forefront until they began their downward spiral once more.
What these last few months have taught me is to expect the worst and hope for the best. It’s a weird way to live but it’s better to be mentally prepared for something to go wrong so that when it does, I can tread through rocky waters as calmly as possible. And when something does go wrong, I try to find the good in those situations. Things could be worse than they are. At least I can see out of both eyes. This is a difficult moment but it won’t least forever.
Before I say hello,
what will happen.
I will stutter.
the string of words
that will flow
out of my mouth,
there will be a bump.
This is okay.
won’t kill my flow.
A big bump
that causes me
to use a trick
won’t stop me
is that I share
I speak for
speak for me.
I continue to learn
how to navigate
the strong waters
when there’s an uptick
in my stutter.
How I approach
conversations has shifted.
I have gained
I never could
I still say
what I want
but I may not
ramble on the way
I once did
when I was comfortable
with the stutter I knew.
For things have shifted
and that’s okay,
It’s apart of stuttering,
nothing is certain.
"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.
Spring has arrived along with the remnants of winter.
Snow one day, seventy degrees the next.
You never know what you're going to get.
The grass is greener as bees fly
and house cats beg to come back inside.
Days are longer, thoughts are shorter.
Everything looks different upon reflection.
Awareness changes thoughts and perspective,
for once I can look at my interactions without judgment.
The keys on a new keyboard are the best present I could ask for.
Smooth and shiny while working together
without pause or hesitation of a key falling off.
My dry eyes make things coming closer appear
like the wizards from Harry Potter, out of focus
and then all of a sudden clear as crystal.