Autoimmune Disease Short Story: Outside I

Edited by Gisella Butler-Colot

Preface

Short stories are made to make you think.

There might be no resolution, an ambiguous ending.

But isn’t life like that?

Try as we may, we try our best to give ourselves our own resolutions in life.

But maybe by looking back on those details we see the answers to our questions, we create the resolution we needed which we didn’t notice before.

“The evidence is in the details” as any detective might say.

In this collection of short stories you’ll see a glimpse of what it’s like having a medical condition and how it can define your life.

It’s up to you whether the definition is a positive one or not.

(Note: this is just the first story in the collection – these stories were written at different times as part of my coping diary)

Short Story I: See you next month Mr Reed

“This could have been prevented” smiles the doctor.

I smile back, I wonder if it reaches my eyes.

They say the eyes are the window to the soul but what if I’m soulless?

There’s nothing left to give, to show.

I’m burned out.

“Mr Reed, did you hear me? This could have been prevented you know…if you had only…” she continues but I’ve drowned her out by now.

She’s probably repeating that I should have done this or that.

How can they do that?

Reduce years of suffering down to one statement: “this could have been prevented” like that makes it fucking better?

Like I could just turn back the time and none of this would have happened.

Really? Or would it just be a couple of years less stuck in this limbo for what I now call life.

The strongest trait in a person to me is the ability to hide.

Hide what’s going on the inside.

Because who likes a moment of weakness?

Socially accepted vocal diarrhea is not my cup of tea.

Sure, everyone says it’s better to let things out.

But if everyone were to do that?

Let out their feelings periodically to then float out there like toxic waste but no answer as to how to really deal with it.

Do you really think I want to know your deepest, darkest thoughts?

Sounds harsh but I’m human, I don’t really want to know.

I don’t want to judge you.

So don’t tell me.

Because who says anyone else really understands?

We’re all different, I agree with that.

I’m sitting in the white room again.

They’re all so deceiving.

Well, maybe not all.

But for the most part, they’re part of the system.

She’s a drug pusher, clear and simple.

She does it every day.

Her shoes have been recently polished.

I wonder when she had the time to do that since I’ve been in the waiting room for well over an hour.

How do I get out? How do I get out?

I’m 36, almost 2 decades since I’ve been locked in.

How does it feel? I wonder staring at her.

She knows nothing of what it’s like.

To be on the inside.

To have it on the inside.

I was 17 when it started.

That was the first time I met her.

She’s been my first of many dealers but I always go back to her.

Drugs I never knew existed changed my life.

It was great for a time.

Then weeks turned to years and I was flying through stages without even noticing the details.

My kidneys gave in first.

When had she stopped caring? Had she ever cared?

“I see you’re doing well Mr Reed with my recommendations”

Does having pain all over my body, putrid breath after brushing my teeth 10 times this morning and my pale skin covered in bruises, count as doing well?

“I’d like to try you on something new…”

Here we go, does she know what she’s doing? Get me out! I plead silently.

“That sounds…great. What could help my…symptoms?”

She looks pensively at my chart; I try to see her notes.

She does that a lot.

Doodle, I mean.

Does she think I don’t see?

I wonder how much longer I’ve got.

It’s a Thursday, she’s probably got a Pilates class at one.

Like I said, I had already been waiting room for an hour.

Her pearly, white teeth shine back at me.

I wonder if she’ll even come in this afternoon.

“Lyrica for the neuropathic pain in your legs, sibellium for the migraines, Omeprazole for your stomach lining, stilnox so you can sleep…of course on top of the prednisone…” her voice drolls on, “now there is a chance of hallucinations, mood swings, appetite increase…”

She reads aloud as if she’s reciting the alphabet.

Does she even know how much these drugs will harm me?

I mean really know, not just what the text says but what it feels like.

In the beginning she might have started out to help people, to be a healer.

I want to believe this.

But somewhere along the line she forgot.

That her patients were people.

She forgot to actually look at them.

Not diagnose them from a bunch of tests.

But diagnose them as person?

To truly see them, their hopes, their dreams…but that would take responsibility, compassion.

It’s like the stray cat you find on the road side, you can’t name them because that would mean you would have to take them.

Take them into your heart.

Side Effects

Did I ever tell you I wanted to get married?

I know, I know old bridges once crossed.

I was 25, only a few years into the recovery that I’m still waiting for.

Her name was Stephanie.

It was my fault.

The first few years were the hardest, the drugs had rendered me impotent.

“There is a slight chance of side effects” was what they told me.

Side effects.

Not being a father, a husband to Stephanie who had wanted children so bad for most of her life.

An end note.

The notes they write at the bottom of the prescription in the smallest font size possible that one can still read – that’s what had ended my one and only true relationship of my life.

It didn’t happen instantly, no that would have been a discredit to her.

Stephanie would have stuck by me.

I’m sure of it.

But I couldn’t do that to her.

What could I tell her? How?

Would we be sitting in our favourite booth by Skyways road?

It’s near the park.

Families go there.

It’s the place we used to go to plan our future and talk about what our family would be like.

Would I sit there, hold her hand and tell her, ‘by the way, because of some side effects I can no longer be the man for you’?

I should change that. ‘I can no longer be the man I want to be for you’.

Side effects.

My life so far has come down to those two words.

They weren’t the only ones.

I lost most of my hair when I was 29.

I’m surprised I’ve lasted this long.

There are so many like me.

People who are sick but not sick enough to die.

In limbo.

Wanting more.

Needing more.

Losing more.

We’re all plugged into a machine.

It keeps us alive.

But we don’t live life.

The drugs go in and out of me, I don’t know what they are any more or what they do.

Til Next Time

It’s been a month since I’ve seen her.

Dr. Monroe.

I’m her biggest prize.

That sounds facetious.

But it’s true.

She’s told me that to my face.

You’re such an interesting case…I’ve been prodded at, ogled at, laughed at, and cried at.

They were all doctors.

Newbies, interns, specialists and people who liked to call themselves part of the medical practice.

Practice.

Was I just part of their practice time?

“Alright, it’s that time of the month, roll up your sleeves”

Nurse Cartwright walks in.

I overcame my fear of needles in the first year of my recovery.

There wasn’t a choice not to really.

Weekly shots do that to you.

At least I’m only down to once a month in these years.

“There we are, see you next month Mr. Reed”

Authors note:

Sometimes we need to speak out. In Mr. Reed’s story, we are asked how much of his own inability to speak or question influenced his life’s choices. Is he a victim of his own thoughts, circumstances or of society? Or is it a mixture of all? Would things have been different if he had a different mindset? If he felt he had another choice, an alternative pathway, would he have opened up and changed his story? His opinions on the medical system aren’t all untrue; they’re just another way of looking at them – perception and experience – two very different things when they occur for different people.