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

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‘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

‘Anything that lights your world, leaves it dark once it’s gone.’ Ashly Lorenzana

So I’m trying something new

It’s a gratitude journal

It seems idiot proof

Every day write down anything you are grateful for

Simple

Except it got me thinking

Thank you anxiety

What the fuck do I have to be grateful for?

All the shitty things rushed in first

Pushing away thoughts of anything else

But after a few minutes I started thinking in simplistic terms

Sure some people might think I’m being melodramatic of course others have it worse

That’s relative though

An individual’s pain or happiness is unique to them

It doesn’t have to be a competition

Or a race to the finish

It doesn’t have to be grand gestures or anything tangible

It can be as minimalistic as being grateful that I have my two dogs to keep me company

Or maybe it’s that a friend sent me a message via social media

Of course I wish I could be like one of ‘those people’ who don’t need reminders like this

But c’est la vie, right?

Maybe I’ll always be the person who thinks of all the negative things life throws at her, before she can see anything good

Maybe I’ll always be the person who needs to write out the things they have to be grateful for, before she even realizes they exist at all

And maybe that’s the point of it all

It’s because of those reasons that I can not only find things to be grateful for

But I can see them for the gift they are

Take vision for example

How often people take it for granted

Reading and watching your favourite show and seeing the sun set or rise

Like we have all the time in the world

Not realizing the beautiful luxury that it is

Never knowing how lucky we are, to bare witness to something that others can only dream of

Only understanding how valuable until it’s all been taken away

With only memories to write down in a gratitude journal

Maybe I’m the person who only gets it after it’s gone

‘Condemn me, it does not matter. History will absolve me.’ Fidel Castro

Some days I’m so consumed with jealousy of every single person who is healthy

I think about all the ways their lives are easier

Not that they don’t have struggles

As we all do

But most people’s difficulties aren’t compounded by an incurable illness

Some days I just can’t wrap my head around even having MS

5 years later and it still feels surreal

Like this just can’t possibly be my life

Some days I feel lucky to have made it this far in life

Having found a life partner and having had a career that I loved

Today, however, is not one of those days

Today is the sort of day where I feel bitter and hardened by what life has had to offer

Today is a day where I feel every single ache and pain and can’t find relief in pill, word or song

Today I can’t find a connection to a single soul out there in the universe, no matter how hard I try

So I look forward to the night

The night when I can sigh with relief that this day has finally ended

The night when I can finally lie down in bed

Surrounded by comfort and pillows and close my eyes

Not knowing what type of day tomorrow will bring

Stuck feeling somewhere between being a hopeful masochist or an optimistic dreamer

Unsure which one I want to be

Wondering which is worse

Still not knowing which will ruin me in the end

‘If you expect the world to be fair with you because you are, you’re fooling yourself. That’s like expecting a lion not to eat you, bc you didn’t eat him.’ Unknown

With all this time waiting

I’ve done little else

But think

Thinking of what I could do if my application for Long Term Disability is denied

Thinking of where I could feasibly work in that case

I know I have a propensity towards the bleak but I just don’t see an alternative working environment aside from being my own boss

Try as I might

I just cannot envision a supervisor being understanding about my ‘chronic absenteeism’

Having never been in a managerial position (shocking, I know) I can’t say how I would be if one of my employees was like me

A good worker but with a spotty work attendance at best

I don’t know how many people would be understanding when it actually came down to it

In theory, everyone can be a Mother Theresa

Reality as we know it

Is a very different story

I think the premise behind this is what led me to becoming a youth worker

The world can be hard

The world can be cold and lonely

And I wanted to give the youth I worked with, a soft place to land

While giving them truths and not sugarcoating life for them

I would create a space where they could count on being supported through mischief, behavioural issues, criminal activities, mental health struggles and in just being themselves

I know coddling isn’t an answer

Nor was it my objective

It was, however, my goal to create such a space they could make mistakes while being in

Getting the support and assistance from me while they were there

I won’t pretend that I was a proud momma every time a youth did something negative

I wasn’t

I’m sure I doled out plenty of lectures and rants and get-your-shit-together-kid lines

But they knew I’d still be there for them in the end

I like the thought of that so much

That I sometimes fantasized the rest of the real world is like that

Not fairytales and butterflies

Real with disease and pain

But with support from all sides

Maybe this is why I’ve struggled so much with work, the health care system and so on

I was hoping that the support I provided to youth

Would somehow be the support I in turn received

Not because of some karmic balance

But because I still believe that people are inherently good

I hoped

That through dark and cold times

I would know there was a support system behind me

Not just made up of prayers and well wishes

But of doctors who would ask questions

And ophthalmologists who would look for answers

Maybe with neurologists that would care about how the disease they’re so focused on, also affects my daily life

Perhaps that’s why I’m chronically disappointed and hopelessly let down

If I, an underpaid Youth Work and Univerisity dropout, could find it within myself

To still care

Years after hearing so many sad stories from youth day after day

Along with my own messed up mind

I guess I just don’t understand why someone who at some point got into their field to ‘make a difference’ just stopped giving a shit about the people behind their diagnoses

I know it’s not easy

With insane caseloads, and not enough hours in a day

Not to mention family and kids and taking out the garbage and just life

I really do get it

And yet I’m still left wondering why I’m not enough to care about

At the end of the day

How do you just close up shop and ignore that person you just saw

Who cried from the depths of their soul and whose desperation for help surely must have hung in the air

Like cigarette smoke on a cold winters morning

Long after they’d gone

When you walked back into the office the next day

Smelling the acrid air

Did you think about them?

Or did you just open a window?

To usher my haunted remains out

And let in your warm sunny day

‘False Hope Is Just A Game Of Russian Roulette, I’d Rather You Just Open Fire.’ – K. Piper

I had a brief moment the other day

Where I felt like I was going to get answers and help

The solutions to persistent eye pain and nausea seemed just within my reach

I fell asleep last night feeling relieved and excited

About finally getting some help

I was almost giddy

If you can imagine that…

I woke up and got ready with my stomach in knots

I felt nervous and apprehensive

Unsure what to expect

See and herein lies the problem with hope

It hurts when it gets snuffed out like a candle

It hurts more than the very reason you needed hope

The ophthalmologist didn’t hesitate to shut down a plausible explanation for my symptoms

Without suggestion as to where to go from this point

I left the clinic

Dejected

I came home

Closed the lights

Crawled into bed

Remembering why hope is a nothing more than a dangerous game of Russian roulette

And I’ve never liked the odds

A typical fight between a couple where one has MS

Person with MS (now referred to as ‘MS’ says to their partner who does not have MS (now referred to as N/A) ‘You seem unhappy. I’ve been noticing it for awhile. It appears to me that when I flare up, you get very stressed become unhappy.’

N/A: ‘What? Me? No. Sure I worry but I’m not unhappy. It’s work and (insert other things like kids, money, etc).

MS: ‘really? It seems to have really started after my diagnosis.’

N/A: (immediately defensive)

MS: ‘I mean, I know I gave you an out after my diagnosis (out a term many MSers are familiar with) and you didn’t take it. But that’s the thing with MS sometimes it gets worse. And I know this hasn’t been easy for you.’

N/A: ‘Exactly. I don’t want to leave. Why are you even bringing this up?!’

MS: (annoyance increasing) ‘Look, can’t we just talk about this? I’m concerned about how this affects you and in turn me.’

N/A: ‘I deal with it okay? You don’t have to worry’

MS: ‘But that’s the thing, you’re not dealing with ‘it’. You’re snappy (insert other words like ‘cranky, pissy, never home, drinking too much and etc)

N/A: ‘Am I supposed to be happy with it?!’

MS: ‘Thats the thing though. You acting so unhappy about my illness makes me feel worse about it. It makes me feel like a burden and I feel like that’s making you miserable. And how can I work on accepting my illness when you’re so miserable about it?’

End scene

Thats the thing

You know

The one at the end of the day

That keeps you up

Worrying over

Going to groups and learning about how to accept a crazy fucked up illness like MS

And not getting sucked under by the sadness and fear that comes along with it

But it is so hard to accept something so life changing

For the MSer

And for the people around said person

There’s such a strong part of me that does not want to accept having MS

I don’t want it to be a part of me, my life or my health for that matter

It seems self defeating to accept it

But it’s not

It’s the opposite

It’s like a coming to terms with MS

A mutual agreement if you will

MS says to you ‘I’m sticking around. I’m moody and temperamental and I like to take over every aspect of your life.’

You respond ‘I know you’re here to stay, and I understand the moodiness…but I can’t let you take over my entire life’

MS says ‘Why not? I have already.’

You answer ‘I’m taking parts of my life back from you. I’ll still have you in my life but you just can’t have it all. So let’s agree that you’ll stick around and I won’t fight you anymore. But you have to understand that you’re only one piece of my life. A big piece, yes. But I just can’t let you take over everything.’

MS ‘What’s the harm in that anyway?’

You say ‘Because if I let you, you’d own me and I would disappear.’

And the curtains start to close

And you and MS walk to different stage exits

The audience knows it’s not goodbye

But rather just a little breathing room

And there’s closure in that

————

The end