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

‘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

‘How lucky I am to have something that makes saying goodbye so hard?’ Winnie the Pooh

Some days the light is so bright that all I can do is immerse myself in it

The pain I usually feel is overwhelmed by the natural beauty the light bestows

Upon me

And all I can do is worship at its sight

Like a pilgrimage to a holy site

I sit in bask in what can only be described as incandescent

The way it heats my face and my body is a reminder of how alive I am in this moment

When I turn away

I am reminded how fleeting beauty can be

And how this moment may not last forever

And there might be a time when I can no longer see the beauty right in front of me

But memories fade and I want proof that this moment existed

I take a picture and write a poem

And hope that something gets imprinted onto my heart

So that I may be able to conjure up these feelings on the days when I just can’t find the light no matter how hard I try

Unknown

It’s so ironic how in the click of a ‘send email’ button, your mood can change drastically

I was feeling decent

Dare I say optimistic (I know, my first mistake)

I met with a social worker at the MS clinic yesterday

And after my awesome group on Friday

I was able to put so many of my thoughts into words to express to the social worker

We discussed numerous things including my difficulty attaining acceptance and my work woes

We discussed my worries with applying for LTD

With not having a job

Not having it be a part of my identity

Of what people would think

And most importantly how I would see myself

The social worker told me to listen to my body

I woke up today with a plan

I would email my employer requesting an application for LTD

In the event that at my next doctors appointment, I was ready to make a decision

So I did

And I got an email back quickly

Refusing to provide me with an application until my doctor provide them with those five questions they requested

Painting me as non compliant and difficult

The questions in case you’ve all forgotten are:

‘1. A description of any medical, physical or other restrictions which may result from your medical condition and which may impact on your ability to perform your job duties and attend work on a regular, full-time basis, meaning five days per week. (Please note that we are not asking for any diagnosis or details of your medical condition, other than as they relate to any restrictions it may have on your ability to perform your workplace duties and ability to attend work regularly.);

2. A prognosis from your physician as to the likelihood that your medical condition might improve, such that any current restrictions and/or modifications might not be required in the future, or may be required to a lesser degree;

3. A prognosis from your physician as to the likelihood of your ability to achieve regular, full-time workplace attendance (i.e. five days per week as opposed to your current average of four days per week) in the reasonably foreseeable future;

4. Alternatively, if your physician determines that it is unlikely that you will be able to achieve regular, full-time attendance in the reasonably foreseeable future, whether it is also likely that your attendance will tend to decline in the reasonably foreseeable future; and

5. Any suggested accommodations or recommendations your doctor may have for employer to allow us to better accommodate your situation.’

I wonder how many of you non MSers think these questions are no big deal

Easily answerable

But to someone with MS, these questions are repetitive and lack insight into what a chronic illness is

I jotted down my own answers beside each question:

1. Chronic fatigue, visual impairment and pain, anxiety and depression (both of which are physiological symptoms of MS), chronic pain and headaches and nausea

2. Unknown. Chronic illness is unpredictable and incurable

3. Unknown. Chronic illness is unpredictable and incurable

4. Unknown. Chronic illness is unpredictable and incurable

5. Possibility of patient applying for LTD if you ever send her the fucking form.

I asked again for the application and she refused.

Bah. I’m tired now.