Here we go…again

After much deliberation

And talking with my doctor and psychiatrist

I’ve decided to try getting off the Paxil again

Although the first time didn’t go so well

I both want and need to do this

I’ve made a list of reasons why I need to do it

I won’t bore you with the details

I’m gonna try again

Differently

I’ll be tapering by 10mg a week

With the possibility of taking up to 4-5 Ativan a day if necessary

While part of me thinks this would be easy if I take all the Ativan

I know that it’ll be one more thing to wean myself from

So for now

They will stay be on my side

There if I need them

I’m trying a few other things

Like trying to be active and busier with other things

Physically and mentally

I’m also trying to go into this with a different mindset

I’m trying to remind myself this time around that I’ve faced many many challenges in my life

Some uncomfortable

Unpleasant

Painful

And I’ve survived

I hope one day this will be another thing I can add to my list of things that I survived

Wish me luck 🤞

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

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

‘See my shadow changing, Stretching up and over me. Soften this old armor. Hoping I can clear the way By stepping through my shadow, Coming out the other side. Step into the shadow. Forty-six & 2 are just ahead of me.’ TOOL

With gradual acceptance comes mounting frustration at the world around you

The world isn’t as comfortable as you aspire to be with your disease (s)

Your spouse won’t stop looking at you with sad eyes

Thinking of a time that will never exist for the both of you again

Your parents always worrying about you

Worrying about how you’ll survive after they’re gone

Your siblings will always simultaneously resent and pity you

All the attention is on you and all the prayers are about you

Your friends have grown so accustomed to your absences

That when you’re ready to be a part of the world again, they’ve forgotten your name

Your workplace doesn’t have a place for you anymore

Posting an ad for your job in hopes of finding someone less ‘sick’

Society doesn’t realize how badass you are

They can’t see past the fact that you need a cane in the first place

The reflection in the mirror looks back at you with weary eyes

It still sees you as broken and in need of saving

Nobody can see the heart that is slowly being stitched together

No one can see the magic that is your brain learning how to accept life as it is

One painstaking tiny miracle at a time

It’s only you

Only you can know how far you’ve come

Only you know about the reparations being made

Only you can know that the old you died in June of 2013

All that’s been left is a shell of a person lingering between two worlds

Not sure where to go

Full of pain and confusion

So with a touch of sadness that will always remain

You finally let that old you go

You don’t watch it get carried away by wind and dust

It’s not your responsibility any longer

You can walk away now

You don’t have to feel the burden of obligatory regret for what you couldn’t give the old you

You can finally fucking breathe

This is your time

Stitched up and with a brain still getting it’s shit together

You’re going to make this world yours

Like it was always meant to be

‘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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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