‘New beginnings are often disguised as painful endings’

I crawl into bed

Close my eyes 

And the first thought that comes to mind 

Is that I am happy tonight 

My heart that usually feels so heavy yet so empty feels like bursting with vibrancy 

My eyes often so tired and strained feel the satisfaction you get after a rigorous workout

My body equal parts listless and pained feels like it’s tingling with anticipation 

My mind cavernous and sometimes chaotic is eager for what might come next

I want to capture this exact feeling in this moment

In the only way I know how

Immortalizing it with words and reflecting it back into the world 

Maybe someone might just be looking back

In this moment I want to just let go and feel sure that the world will catch me 

So secure and safe I feel tonight unlike nights where my muscles tense with fears of what was once and what’s beyond

I want to wake up and bask in the leftovers and soak up the remnants of this moment 

I’ll close my eyes

And wake up in the morning 

And without opening my eyes, I will just know that this morning is different

With the beginning of a new day carrying only hope and possibilities 

And not another fucking curse

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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

Alive to the universe. Dead to the world

It’s my birthday today.                          I never do well with these.                   I dont know why.                               Too much expectation?                       On myself of course                          Not the day.                                  There’s nothing anyone around me is doing wrong.                                   It’s me

36 years old.                                      And at every age along the way           I thought to myself                                By this age,                                               I should have…                              Should have done more.            Should have had more.              Should have been more

I’m not sure where this feeling of never enough began.                            I only know it persists.               Despite my best intentions.   Approaching every birthday I think to myself                                            This will be different.                       This will be the birthday that I’m happy and content to just be.     Where I will simply look forward to the future.                                        With no expectations.                    Only hope to guide me on

Every year                                    During the last week of September.    I find myself slipping.               Slipping into a bad mood.                   A dark place.                                            I try to break the cycle.                         I force myself to see sunny skies.  And happy clouds.                             But instead                                          All I see are gloomy skies and threatening clouds.                          And I know my birthday is coming up again.                                 Reminding me that I’m alive to the universe                                            Even if I’m dead to the world 

People wonder why I make it such a big deal.                                                    I wish they could see the battle inside.                                                      Because it is a big deal.              Where I fight against the darkness trying to take over.                      Where I rail against the face looking back at me in the mirror                    To stop being so fucking sad.               I close my eyes tightly.                      And wish it hard as I can.                  To just be happy for once               This birthday                                    This time.                                             This year.                                              It’ll be different.                                   I’ll be different
And                                                    Every year                                   Leading up to this day.                     The days feel harder.                       The nights feel lonelier.                    The world seems colder.                 And when it’s time to close my eyes.   And wish wish wish.                         My wish is the same as always.  Despite years of never coming true.  Fuck it.                                                     I wish for it anyway.                         This could be the one time the wish is heard and granted.                            I close my eyes.                            Tightly                                                Tune out the noise around me.           I hold my breath.                              And I let it out slowly.                       And I wish.                                        Once again.                                              I wish to just be happy.                  Even                                                      Just a little