‘Time And Health Are Two Precious Assets That We Don’t Recognize And Appreciate Until They Have Been Depleted.’ Dennis Waitley

And I thought to myself

Not for the first time

Just how much

Health really is wasted on the healthy

Since they don’t have a fucking clue

How lucky they are

I wish I could say that I’m not jealous

I’m happy for them

But those would be nothing but lies wrapped in nice sentiments

The truth is

I’m jealous of every person whose body isn’t attacking itself

I’m bitter towards every person who doesn’t know the fear of not knowing if tomorrow they’ll wake up paralyzed or blind

I’m resentful of everyone who doesn’t appreciate their healthy mind and bodies

I fall asleep sometimes

With the unfairness of it all sitting like a weight on my chest

Making my breathing laboured and coming out more like puffs of fire

I wake up some mornings and before I open my eyes

I wonder if this is the day I won’t be able to see anything

I kick myself for not appreciating the last things I saw before going to bed

For not staying awake longer

Taking in as much as my eyes would let me

I can’t pretend there aren’t moments where these thoughts don’t consume me

Sometimes the moments are fleeting

But I catch myself before I get swept away

And sometimes it’s too damn late for me to realize a moment has stretched into a day

And a day into a week

And the only way I’ve noticed how consumed I’ve become

Is by looking at a calendar

And not being able to remember anything distinct about all of the days gone by

But I know they must have passed because I’ve drawn a big red X on them

Like I’m marking them off

Counting them down

Checking them off

For what?

I’m still not sure

Maybe just to prove I was here

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‘I Dream My Painting And Then I Paint My Dream.’ Van Gogh

So I did something today

That I hadn’t been able to previously accomplish

I finished an audiobook

No big deal there

That happens very frequently

I should clarify

I finished an audiobook where the main male character has Multiple Sclerosis

I know it might not seem monumental to you

There was no forewarning about his diagnosis in the description of the book

Because in all likelihood

I wouldn’t have given it a listen

I hate to admit that in the past I’d been unable to continue to listen when I got to the point in the story where a character was revealed to have MS

In that instance

I stopped cold turkey

Right then and there

This time around

I had two hours left in an eight hour book

It wouldn’t have been strange for me to not finish listening

There have been many times

Where the romance audiobook character said the word ‘gosh’ too many times

And with only minutes left

I just couldn’t do it and ended that listen lightening fast

Anyway this time

I got to the part where it is revealed the character has MS

I paused the audiobook for a minute

Maybe more

I called Joey to come into the room

Explained the situation

Made him listen to the line

And then

I did something unlike myself

I kept listening

There may have been some tears

The female characters

Not my own

Well

A little my own

But whatever

More importantly

The story kept going

It didn’t end there

With him in a hospital

Talking medical shit with a doctor

The story continued for two hours

Two hours where I continued to listen

I could have stopped

Deleted it

Found something else

And yet I listened to the whole story

Sometimes with tears

Sometimes not

I kept going

I listened until the very last second

I listened until the credits rolled and the audio went silent

And honestly

I can’t think of anything more fucking poignant

‘No One Here Gets Out Alive.’ The Lizard King

Each of us knows the truth behind those words

We know life is fleeting

Have seen it with our own eyes

Lives gone too fast

Lives taken too young

Life is nothing but a numbers game

By a certain age

We all understand this

And even still

We waste so much time

Time consumed by what others think of us

Time devoured by people who won’t stick around in the end

Time exhausted from living over and over again in the past

Time eradicated by worrying about the future

A future that might never come

Maybe it’s human nature

To waste

We waste food and the earths resources

So why wouldn’t we waste something as precious as time

It’s human nature not to know the true value of something

Until it’s gone

Or about to be gone

How selfish is that?

As if simply because we want it

It will last forever

Making it all the more devastating

When we begin to realize we’re running out of it

I understand that quote now

That youth is wasted on the young

Because they won’t be able to appreciate the beauty of being young and free

Until that too is gone

And like all good things

It’s over far too fast

And once it’s only once it’s really gone

That you truly understand why it even matters

‘Pride Comes Before The Fall’

I like spooky things like Halloween in Salem

And even though I don’t really consider myself a ‘believer’, I like going to psychics and mediums

While in Salem for Halloween and on a boat cruise, I had a free reading done

I sat down and after shaking hands and making introductions

He motioned to a pin on my jacket of a broken heart stitched together

He said it represented me well

I’d been broken hearted

Not by love in the traditional sense

But by the world

I laughed a little nervously and my curiosity was piqued

It was a short reading and I can’t stop thinking about something he said during it

He told me that I always felt like I didn’t fit in

He said that maybe that was okay though

Because some people aren’t meant to fit in

Some people are meant to make a difference

He said that in my work I was trying to make a difference for people

That I’m a healer and a powerful empath

I can’t stop tracing those words in my mind

I continue to think about it and where that leaves me

Which is apparently on long term disability (after finally being accepted a month ago)

In that time period, I feel like I should be doing something

Only I don’t know what

This isn’t new though

I’ve never been someone who had a clear path or knew what they wanted to do from a young age

I went to several different schools and tried on different hats

The only one that fit reasonably well was the last one I wore

Working with youth

I knew even though

That it wasn’t the perfect fit

The school restrictions, the politics, the employer

But it was so close

And then in the blink of an eye

Like things in my life so often do

It didn’t feel right anymore

My direction was blurred

Just like my vision

I only knew I couldn’t go on like that

And it had nothing to do with the youth

It had everything to do with how others made me feel like I wasn’t doing good enough

My pride was so deeply wounded

That I can feel it

Like rubbing salt on fresh wounds

Just thinking about my job, those kids, that work, those people, that job

And I feel it all over again

Every single burn

All the pain

Pride is funny like that

It’s with you during some of your happiest moments and accomplishments

It can carry you through some of the toughest times

And then bury you just as easily

‘There Is More Evil In The Least Sin Than In The Greatest Affliction.’ T. Brooks

Some days my damaged eyes feel as weary as my burdened soul

Some days it feels like I carry the world on shoulders that are tensed with anxious thinking

Some days the world feels as chaotic and unpredictable as the disease discarding lesions on my brain

Some days I feel so jittery that my nerves feel like they’re fraying and uncovering more than just damaged myelin

Some nights I lay awake not able to sleep even though my days are consumed by an overwhelming fatigue

Some nights it feels like electricity is coursing through my limbs and extremities

Some nights I feel like not waking up in the morning still wouldn’t be enough to get rid of all that’s wrong

Sometimes there are moments when I think that even a lifetime isn’t enough time

Time to shed all the broken and irreparable pieces of me

Time to start over

Time to begin again

Or maybe a lifetime is all it takes

To be gifted a new body and mind

And leave all that affliction behind

In the past

Where it belongs

Buried and covered

In someone else’s grave

‘Nobody Told Me There’d Be Days Like These.’ John Lennon

There’s a song by John Lennon

It’s called ‘Nobody Told Me’

I can’t even begin to count how many times I’ve used the lyrics to update my Facebook status

Or to caption my Instagram pictures

And most definitely whispered under my breath

It’s not particularly mind blowing

But it pretty much sums up an average day in my life

In the life of someone with mental illness

In the life of someone with a chronic and incurable illness

I wonder sometimes

If someone had told me that days like this could happen

Would it have prepared me better

Would it have armed me with the tools I need to make it through that day

Would it have given me the weapons I need to face another day

Part of me thinks so

Maybe Lennon was on to something when he lamented that he wasn’t warned for what reality would become

Because that’s the thing isn’t it?

Once upon a time in his life

In my life

Maybe even in yours

It wasn’t this way

Maybe yesterday

Maybe a long long time ago

It was different

Maybe if someone had told me

I would have appreciated it then

Or maybe I could have preserved it better

Like a photograph that keeps life frozen in time

But now I’m stuck in the present

Facing each day blind

And now I’m here

On nights like these

That nobody told me about

With only the song lyrics of a long dead rockstar to keep me company

‘Nobody told me there’d be days like these…

Strange days indeed’

‘What Matters Most Is How Well You Walk Through The Fire.’ Charles Bukowski

Sometimes life just seems so hard

I know

That seems so angst-y

It just that it seems filled with pain and sadness and so much heartache

That sometimes life just doesn’t seem worth it

After all what’s the big reward?

It’s supposed to be in life itself

Isn’t it?

But what if, it’s not?

What if you don’t reap the rewards?

Sometimes life with MS and anxiety and depression feels like this

It feels like all effort

And no great pay off

Maybe it’s just me

I don’t know

Maybe I can’t find happiness in the little things

Or maybe the happiness just isn’t enough

It doesn’t matter

What does matter?

‘What matters most is how well you walk through the fire.’

It matters if you can find the strength to persevere in spite of it all

It matters if you can find the courage to keep going when it feels like there so many more bad days than good

You matter even when you feel like you don’t

And that’s probably the hardest thing to remember

Especially when you keep trying to douse the flames from burning up around you

Instead of walking through them

(A picture of happier days 😏)