‘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

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‘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

Project Take Down Paxil 👊

I feel like I should apologize for being MIA lately

But I’m not really sorry

Because it’s for a good reason

It’s for me

Last Wednesday I dropped my Paxil dosage from 40mg to 30mg

I won’t pretend I was totally cool with it

I had a lot of reservations

But I also really wanted to do it

There were some shitty days obviously

Two days when my anxiety spiked to an uncomfortable level and I needed to take more Ativan

Several days where I had dizzy spells that came and went

But I survived

I can tell the following things helped:

Writing affirmations daily

Trying to stay busy

Doing a lot of introspection over the root of my anxiety

Now today I went down to 20mg

Last nite I was really starting to psych myself out of doing this

I kept thinking ‘woah 20 is a big drop from 40’

Then J. reminded me that I was going from 40mg to 20mg

I’ve been on 30mg and am stable there

Now I’m dropping 10mg again

Which I successfully did last week

I needed to hear that

It helped ease my fear

I made him write it out so I could print it

I’ve already reread it a few times

Along with some other affirmations

I need to keep reminding myself that I’ve already dropped 10mg and while unpleasant

I survived it

I’m still safe

I’m still here

And most of all

If I did it once

I CAN most certainly do it again

Changing the narrative helps

Taking the unknown and making it something familiar

Removes the fear

For anyone else out there struggling with anxiety

If I’ve got this

You’ve got this

Hard and uncomfortable as it is

We have what makes people into warriors

I’m going to remember all of the difficult things I’ve been through in my life

I’m scrappy

I am a fighter

Think of everything you’ve survived

I hope you keep fighting

Because I will too

That’s what warriors do

What I wish you knew

Once upon a time I saw a medium

Who told me that someone very close to me has been living their entire life with one foot in the grave

I thought to myself then as I still do now

That it was the most perfect way to describe this person

As a loved one of this person

It’s frustrating and maddening that they can’t shake it off

And see the love around them

Now as a person who can relate all too well

It’s frustrating for a different reason

The people around don’t understand

They don’t understand why that one foot stays firmly planted in the grave

They don’t see how hard it is to keep the other foot out of that fucking grave

They don’t get the difficulty making it through one day is, one function, one more appointment

I wish they knew…

It’s like constantly treading water to keep my head above it

My limbs feel exhausted

My brain keeps wondering when it’s an acceptable time to admit defeat and give up

My heart feels hollow

There’s a bone weary tiredness that permeates throughout every cell in my body and into my brain

I can go to sleep sometimes and sleep for hours

Wake up and feel like it’s never enough

Or I can lie in bed staring at the ceiling

Thinking that if I wished hard enough

I could make this all go away

I’m 36 years old

I can’t even remember a time before this

That’s fucked up

I mean

Surely I know there was one

I just can’t for the life of me picture myself in it

The present is like living in a post apocalyptic world

Where everything is bleak, tarnished and there is no hope

I can say for certain

This is not an enjoyable place to be

Living this way is not only exhausting

It’s also like having a flu you can’t shake off

No matter how many medications you’ve tried and doctors you’ve seen

Yet, even with the desire to feel better

The flu rages on

When you can’t remember a before

And you can’t see a future

The world becomes very narrow

It becomes the perfect setting for a dystopian society in a novel

Of which, one may want to read about

But no one wants to actually live in

It feels like I’ve become the main character in this novel

Searching for a way out

Up against opponents like doctors, employers, insurers

Trying to find allies

Unsure of who you can really trust

Like every good story

There’s a time constraint

I start to fear that I’m running out of time

I’ve read so many books where someone who needs help

Gets saved by a hero

In some form

I know that my story is different

There is no one coming to save the day

It’s just me

Still trying to find some way to fully live in this world

With both my feet firmly planted on the ground beneath me

‘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

‘Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean.’ Maya Angelou

I was on the phone with my caseworker from my private insurance who will be in charging of making a decision in my claim for Long Term Disability

We were on the phone for over an hour

An hour in which I often felt I had to defend my illnesses

An hour in which I often felt the need to justify my request

An hour in which I stumbled over words that would have once come so easily to me

An hour in which my body ached and my eyes felt tired

I’m stuck between an employer who tells me I’m not capable and an insurer who tells me I’m not sick enough

I’m stuck between wanting to work and wanting to be off

I’m stuck between wanting to fight and wanting it all to just be over

So here I sit

Yet again waiting for someone else to decide my fate

While I wait

With my heart in my throat

With my stomach in knots

Without hope for a better tomorrow

Without any hope