‘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

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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

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

‘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

MS and the world around me

I went to my first MS support group on Friday

It took me five years after being diagnosed to take the plunge

I was always hesitant to go

I was afraid of what my future might look like

It was a small group of 8 people

With different types of MS and in different stages of the disease

3 in the group had wheelchairs

A few had canes

Everyone welcomed me right away

The topic was ‘Why I’m glad I have MS’

I winced

Ugh this is gonna be brutal

We went around the table

Many described how having MS forced them to slow down

To reevaluate their life and priorities

To focus on the important and forget the small stuff

No one ignored the hard days

One described it as ‘the rabbit hole’

And seeing it open up

But not plunging into the darkness

They talked about fear, sadness,pain, love and hope

I sat quietly until my turn

And I spoke honestly

I told them I couldn’t find anything to feel glad of

Yet

And I couldn’t imagine a time when I would

But I was grateful for the resource of a group such as theirs

I explained to them how I thought I’d finally accepted having MS

Only to realize that I only was acknowledging having it

Acceptance was still a long way off

It still is

I talked about how I was going through a particularly dark time

I told them I was having difficulty reconciling my current life with what I thought my life would look like at 36 years old

I looked around

They were nodding their heads

I didn’t see the same sympathy that I see so often in my friends and families eyes

I saw real understanding

The kind that only someone who’s been there can provide

And I realized it’s been five long years since diagnosis and I’ve been doing this all wrong

I’d chosen to go at this alone

Seeing other 36 year olds living their life

Other 36 years who don’t have MS

And comparing my life to theirs

And coming up short every single time

The people in this group weren’t sad and pathetic

They were living their lives

Enjoying their lives

Maybe they adapted their lives to work around having MS

Maybe their life plans changed

But they didn’t stop living

That’s true acceptance

After I left

I felt a sense of relief

At having done something I’d put off for so long

I also felt hopeful

For the first time in a very long time

Not hopeful for a cure

Or that tomorrow I’d wake up without MS

But that one day I too would be able to finally accept that I have MS

With all that it includes and with wherever it might lead me

And I’ll be okay

I’m not there

Yet

Not even close

But I want to be…

I’m like the Tonya Harding of the non figure skating world

More specifically

I am the Tonya Harding of the sick persons world

Like Tonya, I’m not the easiest to like

Like Tonya, I don’t evoke feelings of sympathy

Like Tonya, I’ve had to work at everything I’ve ever wanted

Unlike Tonya, I know the war is with myself

No one else ever should a chance

I know that there is no outside force that can be changed which will miraculously make my own life any easier

Nor will it make me the perfect poster child for a winning MS campaign

Or the face of the next Bell Let’s Talk day

I’ve accepted that things will likely always be a little harder for me

It’s my cross to bear

I’ve learned not everyone has one

And yes they are indeed lucky for that

Would I change it if I could?

Without hesitation

Do I think that there is anything within my control that would make said things easier for me?

Not a chance

The cross I have to bear

It’s a big one

It’s heavy and solid all the way through

And I drop it often

I can’t ever lose it though

Because I know it’s mine for this lifetime

So I pick it back up

And march on with it

It never feels lighter or easier

But I get more comfortable with it

I still stumble, and I struggle

But I have learned something

That cross will always be mine

And so I bear that damn cross

That has my name so deeply carved in it

That it could only ever be mine

No doubt or question

Sometimes I think I was born with that fucking cross

It was always mine

It claimed me

Before I had a chance to even breathe