And she lived…

So as some of you may know MS has caused ongoing vision problems for me

I’ve had optic neuritis several times

Each time it has stolen a piece of my vision 

Only to return it scarred and less functional

I used to be an avid reader

‘Used to’ 

It makes me sad to even write that

I would devour books so quickly and effortlessly

I took that ability for granted

I never thought there might be a time when I wouldn’t be able to

I can still read

But it causes pain and irritation in my eyes 

So I started listening to audiobooks

But it’s different now

For some reason the books of before

Don’t hold my attention through listening 

So I listen to fluff

I listen to romance audiobooks 

With happily ever after endings

The old me would have snorted and scoffed with derision at this shit

But anyway

That’s what I listen to these days 

A few days ago I started listening to an audiobook that had tons of positive reviews 

People wrote that it was sad and beautiful and romantic and they cried

So I gave it a go

The story progressed nicely

The hero and heroine met and fell in love

The heroines sister was ill and eventually passed away

I thought to myself ‘that was pretty sad’ and was glad I’d moved past the sad part in the story 

And then

There was an incident in which the hero ended up in the hospital 

And his nurse said he’d likely have to start a round of Solumedrol 

Shit

I thought

I know what that is

It’s a steroid for inflammation

Don’t let this go there

I kept listening 

The heroine had heard of that drug before as well since her sister had battled Huntington’s disease 

The hero and heroine looked at each other and the heroine asked, with tear filled eyes if the hero was sick

The hero, with great trepidation and a heavy sigh (that only someone with a burden knows too well) states that yes he has a disease

Shit

I thought

Don’t let it be what I’m thinking 

He says he has Relapse Remitting Multiple Sclerosis

Pause

For me anyway

I don’t know what the heroine said

I don’t know what the hero said

I stopped the audiobook

I guffawed

Seriously

I fucking guffawed

I got out of bed

I turned on the lights

I got annoyed

So fucking annoyed 

Why did this guy have to get MS

MY kind of MS

What kind of fuckery is this?

Who fucking gets MS in a romance book?

I felt cheated

I passed the sad part of the book

I wanted the happy ending

I needed the happy part where everyone is happy and safe and healthy and the hero and heroine get their happily ever after

I did not want to relate to the fucking hero’s sad shit

Full stop

I got annoyed and irritated when I found out I had MS

When I learned that it was MS causing the blurred vision 

Then after learning about MS and the possible course of the disease

I felt fucking cheated

This was not supposed to go this way

I conquered anxiety

I manage my depression EVERY damn day

This was supposed to be MY time

Even though I wasn’t reading romance books then 

I’d read enough books at that time to know

That every great heroine has to overcome a battle

And I did

With great difficulty

With a lot of pain

I was ready for the happy ending

I expected it

Where was my happy ending?

I don’t mean the drivel with the love eternal and the wedding bells, 2.5 kids, house and a white picket fence

I mean the part where I get to live out the rest of my life in peaceful contentment

Feeling like a heroine 

Cause I’d slayed my beasts

And then it came to me

This is why I’m so pissed off with MS

So angry so much of the time

Because I don’t know how this story ends

I don’t know that the heroine is happy in the ending

I don’t know how she’ll live out the rest of her life

It’s like living in a perpetual cliffhanger 

I don’t know how MY story ends 

I know how I WANT it to end

But MS came and put a big huge ‘WHAT IF’ across the page 

I don’t want to worry about the what if’s 

I don’t want to lose sleep over the what if’s 

It’s too many blank pages 

Some might say that’s the same for everyone

But that’s bullshit 

We know the most people will not lose their vision

Most people won’t be wheelchair bound 

(My two biggest fears)

I want to hit play on the audiobook 

And accept that the hero does have MS

But I want to hear that the hero wins

I need to hear that the hero 

gets his happily ever after

But what if he doesn’t?

What if I don’t?

So I’ve left it on pause

To be continued

It’s a picture of time frozen in place after which the hero and his love are together and he happens to have MS

And I’ll leave it there

An epic and everlasting ‘to be continued’

Nothing bad has happened yet

And everything is a possibility

That’s my happy ending

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18 thoughts on “And she lived…”

  1. What the actual fuck.

    I can’t tell u how ur story will end. But just know ur the hero in the lives of a few youths I know, so keep on fighting the good….often shitty and hard…but still good fight.

    Liked by 1 person

  2. I hate that you are dealing with MS issues. I do hope they get better soon. You are so strong and amaze me. You give me hope when I am down about the MS, like with pain in the ass flare up I am dealing with. I always love reading your blogs and your responses back. I love how passionate and truly strong you are. Take care of you and let me know if I can do anything for you!!!!

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    1. Its funny I would never describe myself as strong but maybe we are both pretty strong! Thank you for continuing to read and I got your back during this flare up. You got this 💪👊

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      1. Oh honey, I will always continue to read your posts!! You are stronger than you give yourself credit for! And when you feel like you are not, just let me know and I will help you kick some ass!!

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  3. Thank you.
    Reading this felt like you were taking the words right out of my head. From RRMS, to your worst fears, to feeling annoyed and cheated. I have the same chapters in my book.
    Screw that stupid story! Fuck the stupid writer who thinks MS is an obstacle to just overcome or a battle the characters can “win”. Fuck the “what if’s”. We’ll write our own damn happily ever after! It’s scary, and it might not be the final chapters we dreamed of as little girls, but at least we’re still here.

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  4. I cringed a little when I read this because I have just recently written a book (that I am trying to get published) about a tortured sole who comes down with MS (PPMS – the kind I have) and it forces him to confront a past he doesn’t want to acknowledge because he might need that someone in his past to help him as he confronts a scary future. The ending is not an downer though. It made me wonder what you would have thought of it had been that the story you listened to

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    1. Aw man i didn’t want to make it seem like writing about MS was the problem. It wasn’t. I think for me it was just the idea of having it come out of nowhere in the midst of a romance book that I listen to bc I can’t read bc of MS. It’s like a cruel twist. And I think it’s admirable that you write from your experiences.

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      1. No offense taken, and I can understand what you mean. Getting into a good booking thinking it’s going one way and having it turn out to be something else that doesn’t provide that brief escape you hoped for.
        Part of the reason I wrote it and hope to get it published is for people to understand what living with this shit is like. It isn’t autobiographical at all, the the experiences of the main character and how his symptoms first arrived, are. Wish me luck

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