‘The Mind Is A Terrible Thing To Taste.’ Ministry

So I’m laying in bed thinking about my panic attacks

Crying

Hot frustrated tears

Because even still

I just can’t wrap my head around the why

If I know that my fears are unfounded

That I won’t spontaneously ‘go crazy’

And that I’m safe

That my panic attack won’t last forever

If I have evidence to prove that as well

Then why in the actual fuck am I still having these ridiculously soul wrenching panic attacks?

The kind that exhaust me

Leaving me crumpled in bed

Sleeping in an Ativan induced stupor

It seems that I have all the knowledge and the tools

Necessary to overcome all of this

And yet

Here I am

Terrified still

Of not just being in a state of panic

But of simply having another panic attack

Ugh

I want to beat my head in exasperation

So many years later

Having survived innumerable panic attacks

Fearless in the face of meeting the boogeyman

Unafraid of being awakened by things that go bump in the night

Completely confused

Why I’m still tormented by the threat of another panic attack

And yet somehow it seems perfectly fitting

That the only thing that could truly terrify me

Is my own fucked up mind

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‘…In A World Of Ordinary Mortals, You Are A Wonder Woman.’ Queen Hippolyta (Wonder Woman’s Mom)

Struggling to get through today

Hour by hour

Minute by minute

Each second more excruciating than the last

Skin crawling

Head pounding

Eyes straining

This is the part in the movie where the poor guy reaches for his drug of choice

Where the sad woman guzzles her beloved bottle

It’s the climax in a novel

Where emotions soar to dizzying heights

Where nothing can possibly survive at such intensity

Like a car reaching peak speed

Like an addict reaching the height of their high

The moment is suspended in time

When the audience knows a turning point is coming

Watching for the pivotal scene in which the hero sheds his old skin

Where the heroine finally emerges

That’s what happens in movies and books

In real time nothing is ever quite so profound

The moment goes on and on

Stretching uncomfortably long

The hero remains sheathed in weary skin

The heroine hides in her shadows

There’s no audience waiting with bated breath

Rooting for the breakthrough moment

Instead

There’s only a woman looking at herself through a mirror

Waiting

Watching

Begging for a glimpse of the heroine to change the narrative of this story

From another unhappy ending

To one in which she finally gains her superpowers

The Odds

I find myself thinking in terms of:

When I get better

For example

When I get better, I’ll change my Paxil

Or

When I get better, I won’t feel so down

Or

When I get better, I’ll finish my degree

The list goes on and on

Sometimes it’s things exciting like travel

More often than not

It’s simple things

Like

When I get better, I’ll go for walks with Joey and my dogs

Ultimately

It always ends with me waiting for a time when I’ll feel better

Always waiting for a time that may never come

Then I think to myself

What if this is as good as it gets?

I mean

Really

And what if it is?

Does that mean I throw in the towel?

Give up

Admit defeat

And then what?

So I started thinking tonight…

And bear with me

This is wild

….

What if I just stop waiting?

…..

Dun dun dun

What if I stop waiting for a future that might never come?

What if I just start living like this is as good as its ever gonna get?

There is something so incredibly freeing about that

It’s difficult when the people around you encourage you to think of how much better things can get

As well intentioned as it is

It just doesn’t help

I’m so fucking sick and tired of waiting

I’m so tired of hoping

Fuck waiting and hoping and wishing

Maybe it’s time that I just start living

For today

I mean…Yeah maybe things will get better

But I just don’t want to waste my time waiting for something that is only possible (What is possible )

I like the odds of probable (What is probable)

It is probable (because there is evidence to support it) that tomorrow I will wake up

And feel as shitty as I do right now

But instead of going back to bed and waiting for a better day

I’ll just keep going

I’ll step out into the world and I’ll still feel shitty

But at least I will have fucking done something

And maybe for this to stick

I’ll have to keep reminding myself every day

That my life deserves a fighting chance

Doesn’t it?

That in order to really live

I need to remove both feet from inside of the grave

Any other way

And it’s just not probable

‘It’s Not What You Look At That Matters, It’s What You See.’ Henry David Thoreau

Sitting by the water

He takes out his notebook and a pen

He starts addressing the letter

‘Dear Mom and Dad’

He stops

Sits

Staring out at the sea

Reminded of all the times he had sat in this very spot before

Always looking

But never really seeing

Always searching

Never finding

Today is different

Today he is thinking of his parents

Thinking of what to write in a letter that will only be received after he’s gone

Thinking of what, if anything, will bring comfort to his parents

He doesn’t want to think about the sadness they might feel

He prefers to think of their future and how happy he thinks they’ll be without worrying about him all the time

Should he write that, he ponders

No

That sounds like he’s doing this because of them

And he’s not

He’s never done anything so much for himself before

He starts again

‘Dear Mom and Dad,

I love you both

I’m sorry for any grief this might cause you

But I’m doing this for me

I can’t stand it anymore

I hope one day you can understand that.’

He stops again

He rereads his words

He cringes

The words sound so hollow

It all seems so pitiful

That’s not what he wants to convey

This isn’t a sad ending

He needed this, he thinks

Surely they have seen that

Maybe there’s no way to write that out

Maybe there’s only a way to feel it

If only he could bottle up an emotion and attach it to his letter

He feels frustrated

Fuck this isn’t what he wanted today to be about

This day was supposed to be a happy day

He shouldn’t have waited until today to write this

This is good really

The end of a miserable life

He tears up the letter

He tries again

‘Dear Mom and Dad,

I’m doing this for me. A new beginning.

Love,

Your son’

He reads it over several times

It’s as good as its gonna get

He doesn’t have a lot of time left

He goes back to his lonely apartment

Filled with stuff he has no use for anymore

He wonders if he ever really enjoyed any of it

He doesn’t care if thieves get to it

He finds an envelope and puts his parents names on it

He had made plans with his parents for tomorrow

They are going to pass by

They’ll knock until they realize the door is unlocked

They’ll wander in

Walk around

Call his name

They’ll see all of his things scattered around

Remnants of a life he never really excelled at

Leftover pieces of a life that he could never really call his own

Things he won’t need anymore

The letter will be on the table

They can’t miss it

He wonders if they will figure it out before reading the letter

He hopes in someway they saw this coming

They had to

It’s been a long time coming

He doesn’t really care to say his goodbyes to anyone else

He just wants to be gone

Finally

He goes into his bedroom

There is a small bag in his closet

That he bought especially for this momentous occasion

He feels positively electric

His hands are shaking

He unzips it

Peeks inside

Making sure everything he needs is still there

Even though he has checked and rechecked a million times

He hasn’t slept in a few days

Too full of anticipation for this day

He takes a seat on his bed

Thinking about this last year

He’s exhausted and giddy at the same time

Giddy…he thinks

That’s the only time he’s ever used that word to apply to himself

He is so ready to take this leap

He gets up

Grabs his bag

Walks to the front door

He won’t need his keys where he’s going

He turns back

One last look

He feels nothing but relief

He shuts off the lights

Closing the door behind him

He’s ready

He takes a big breath

This isn’t an ending

He exhales

It’s his new beginning

One foot in front of the other

Not longer just about walking away from an expired life

But towards a new one

Just waiting to be found

‘It’s not what you look at that matters, it’s what you see.’

Radical Self Acceptance

(This was from my MS support group I chaired last week)

Fighting reality only creates suffering. While pain is inevitable in life, suffering is optional. “And suffering is what happens when we refuse to accept the pain in our lives,”

Close your eyes and think about being diagnosed with MS

Think about the difficulties you encountered

Think about the hurt, pain and suffering you’ve experienced because of it

Think about all the medications and treatments you’ve tried

Think about how many times you’ve gotten your hope up for some miracle cure only to be let down

Think about all the time you’ve been angry, depressed or lost because of having MS

Now open your eyes.

Look around

You still have MS

So does everyone else in this room

Nothing has changed

simply because you deny it exists.

It is still there, waiting for you to deal with it.

“When you open yourself up to accepting the present moment precisely as it is, with no judgments, you are free to look at all of those puzzle pieces of the present moment and start to piece them together. “

What if instead of having all of that, you simply decided to radically accept your reality that is having MS?

Acceptance isn’t giving up

It isn’t resigning yourself to the illness

It is simply accepting that whatever is happening is happening

Acceptance is about letting go of the person you thought you were and the life you thought you had and making the most of the one you actually have

Some helpful strategies to practice radical self acceptance:

Acknowledge and learn how to cope with negative thoughts and feelings

Rewrite your story

Find activities that you enjoy

Spend time with the people you love and that make you happy

Note:

I’m not even close to being there yet…but I want to be

‘Deep in the heart of my soul, I’ll feel so glad to go.’ The Smiths

Disclaimer: I write this blog as a form of release. It’s cathartic. Please don’t tell me my feelings are wrong. This isn’t the place for that.

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What if this is as good as it gets

I keep replaying that in my mind

My heart doesn’t want it to be true

It lies to me

It tells me that it’s gotta get better than this

It weaves stories of a made up future that doesn’t include pain and sadness

And most certainly doesn’t include a disease as fucked up as Multiple Sclerosis

It knows just what to lure me with

It doesn’t bother with lies about riches and fame and fortune

My heart shows me a future that is serene

Days filled with thoughts that don’t make you feel like you’re going crazy

Nights slept through instead of worrying obsessively about what will happen next

It shows me a calm that I have never known in this world

It shows me a future that I instinctually know will never be mine

My mind is always there to remind me of what I already know

The heart doesn’t listen

Like they say

The heart wants what it wants

And so that traitor continues to beat

Thump thump thump

Sometimes the pounding is so loud and it reverberates through my entire body

Callously letting me know

That it’s still there

My mind always racing

To catch up to the beats of my heart

Ensuring it’s repetitive voice isn’t lost

So I continue

Another day filled with my heart and mind at war

Another day spent fighting and trying to drown out the noise

That nobody but me can ever hear

Still I wonder if it’s easier

To fight battles that exist outside the walls of your own skin and bones

So now I imagine a future

Without the lies of harmony and calm

With an enemy on the outside

My heart and mind finally calling a truce

And letting me Rest In Peace

The Pincushion Queen

I’m filling out a self exploration journal

It asks me questions that make me think

I mostly like it

Until it stumps me

It wants to know three thoughts that made me smile

I sifted through the ashes of the day that was coming to an end

Searching for the remnants of a smile

Surely there had to be something

Instead I walked through empty hallways in my mind

Like an old home

Abandoned

There were cobwebs where laughter should have been

There were dusty corners where smiles should have hidden

I felt frantic in my search

It had to be there

Hidden under the tarps

I needed to find the right moments to erase the sadness in my heart

From room to room

Floor to floor

I searched

For something to hold onto

I looked around at a strange home that I’d never been to

But like all empty dilapidated homes

The previous owners had taken the memories with them

Maybe tomorrow

I’ll get lost in my old home

I’ll find all the smiles and laughs

That have gone missing throughout the years

Maybe tomorrow

I’ll write it all in my journal

Hoping it’ll fill up the emptiness in my mind

Wishing that my heart will be so filled to the brim

That the sadness won’t have any place to slither in

And I can tape the pages of my journal

All around my broken bits

Covering the seams to keep all the happiness locked inside