Disabled,what does that mean?

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Disabled

That word is loaded with expectations. Funny.

You know what I mean? Right…..

And yet we have learned that being disabled lowers our expectations of said persons.

Or raised our expectations of those with disabilities. 

This may be true as in, that everyone has different abilities.

But, once again we then set higher expectations and often say or imply……

“Come on now, there has to be a way, if you only tried harder you could do it.”

Which in turn can put a guilt trip on those of us who have spent their whole life having to prove that we can’t, or shouldn’t, because it isn’t good for our disability and can make things worse.

People tend to see the amputee or paraplegic athletes who work their butts off and are “able” to do crazy things in their chairs and build enormous muscle. Or the 80 year old who ran a marathon or bends her body into a pretzel and in turn wears high heels and eats a clean diet.

We admire these people.

I admire these people.

But like Cancer is to Cerebral Palsy there is nothing to compare or compete for.

We all have challenges in this life. Some more so than others. And even in each challenge there is a scale of one to ten in each. No illness or disability is the same from one person to the next. No treatment or path is or will be the same.

We are all individuals with our own journey and approach to life.

People can be well meaning. Or not…..they might think they are, but are not.

I try to weigh the importance of someone’s approach to me and my challenges.

I have to find out if they are even receptive to really listening and finding out what is really going on with me, or are just uncomfortable and wanting to “fix” me.

I can’t tell you how many times I have wasted my energy trying to educate someone who is dead set on their own agenda. And that includes Doctors.

I know my body and how I feel about it, or what is truly going on. I have had 50 plus years talking to it and listening as well.  I also have certain criteria for what I will do to try and treat my stuff as it comes up. I am not opposed to input…..if I ask for it.

I look for respect in my choices. I am stubborn.

No, wait…..I am careful when it comes to my body, and my life.

I am disabled. But that doesn’t mean that I am less than.

Just different like everyone else in this one size fits all world.

 

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A day in the life of my broken body. 


I usually write about the aftermath of my divorce and how that has messed me up.

But tonight, or rather middle of it, verging on morning……

I decided to document my chronic pain experience that I live with and sometimes blame my divorce on. I have a connective Tissue disorder called Ehlers Danlos Syndrome and my body is literally falling apart. The pain and fatigue are unrelenting. If I want to be the most comfortable it is spending a lot of time being sedentary and as a result often lonely.

So here goes….

First  comes the soreness and the slightly broken feeling from doing something as simple as shopping for a few groceries.My joints trying so hard not to topple like dominos….sublux and dislocate. You prop your body against the checkout stand, toes turned inward, knees bent, and lower your back as if you are sitting with only the checkout counter for support while you wait your turn. Because by the time I reach here my body is starting it’s avalanche into days of recovery….

You’ve learned to tune out the surroundings and gaze at the peppermint patties, M&M’s and discounted My Little Ponies that tempt small children at their eye level.

Now it’s my turn to check out so I make small talk and joke with the cashier to feign the anxious feelings of needing to still make it to the car and load up your purchase and then drive with quivering legs, home. The journey seems large and insurmountable.

I manage to make it, completely exhausted. I take a few deep breaths and unload and put the groceries away.  Then I collapse into the couch to regain some energy.

Every muscle starts to seize with revolt. Relaxing at this point sends your body into the beginning of a chain reaction. The beginning of an agonizing few days of recuperation.

I’ve never run a marathon, but imagine it’s much the same.

A delicate calculated balance between doing just enough so the pain doesn’t consume you. Sit to long, and moving is excruciating. Move to much, and the healing is prolonged.

Slow calculated movements to realign the sacrum. Micro adjustments. Long slow stretches, just enough as you linger and let that pain be relief, momentary release! You learn to manipulate your bones and tendons, ligaments and muscle, as if a chiropractor was putting you in alignment. You learn to read your body like Gray’s Anatomy.

Eventually you crash hard. Only to wake up an hour later, heart pounding and reflux pooling in your esophagus. Autonomic disfunction. I can feel and hear the blood pulsing through my veins. Pulsating in my cranium, whooshing in my ears. I feel inside, more than out. A chill travels up your spine and spreads out like an cool oil slick. Tentacle like sensations awash over your tender overly sensitive skin. I use to fear these episodes and send myself into a panic because you were told they were psychosomatic. Panic attacks. I’ve learned different. They are not….my autonomic system is haywire.

You feel like you just want to die. It seems safest. You become somewhat accustomed to it. After all it hasn’t killed you yet.

I learned to keep the episodes to myself because somehow you began to believe it too. You begin to expect it, and roll with it so to speak….no one understands unless they too suffer the same. You become recluse and stop doing even the ordinary because the price is to high to pay.

Every now and then I test the vessel I reside in, and take it for another ride. No expectation for a different outcome. But welcome to one. The alternative is loneliness. Sometimes you have to pay to play. You weigh the pros and cons and carefully plan each and every use of energy.

Today was not the day. No different than the last.

So now I lay here finding distraction to make it bearable. Because even though my body needs to rest. It simply can’t.

This is my new “normal”

 


Are we just Moon Dust

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After the guilt settles into your bones

It seeps into every crevice

It infects your integrity

Your peace of mind

It speaks to you with disregard

 

Your own needs pale

 

I dig deeper to find

A reason for this suffering

 

I could launch myself

Bleed my own desires

Needs

 

When is enough enough?

 

I ask “God”

 

I am still undecided about it…..

Or him

Or Her

 

Goddess perhaps?

 

Are we just Moon Dust

In disguise

 

Or are we

Are we

What are we?

 

Again I ask…..

Are my needs not worthy

As well…..

 

 


Soul Stars

Each soul cries out for rebirth
reaching for the stars
illuminated scars

A galaxy of pain and sorrows
drifting from one experience to another

Are they pre ordained
or just dust

floating into
or on
currents

One shift
and

like a dandelion seed
sent off
too

Find it’s bed
and nestle
in

Rain
Dirt
a dog nose
seeking scent

disturbed
reallocated

I lay here
feeling home
and yet
Not

My comfort
upended

I have not found my resting place

Shifting sands
Ruffled feathers
decisions of the winds
blown in
by
Destiny?

Or clockwork
that of a Master Craftsman…….img_8757


Purpose

Purpose

 

The dreams are flooding my mind again….

Both day ones

And night

 

The day ones dance between

Beach sand and mountains

Babbling brooks and forest glens

 

At night they are reminders

Of stupid childhood experiments

Learning experiences for being wise

 

I guess the biggest lessons were yet to come

And they did

Huge price tags upon the heart and soul

 

Scars left when those fees were risen

By the taker

 

No warning

No given reason

Just yanked like a single dirty sock

tossed

No purpose anymore

 

Perhaps it could be

A puppet

Discarded buttons for eyes

Leftover thread for mouth

Yarn if hair was appropriate…..

 

But it too would find a discard pile when

It’s purposefulness had expired

 

Eventually if it doesn’t find a way to shine

It will be looked past

Again and again.

 

Until it gives into autonomy

 

Or the Nimbus returns……

 

~Suenamae~

 


WHY

What keeps you living?
Stirs your soul…..

A brilliant sunset?
Sunrise?

We human
Beings…..

Each random
Chosen

Sentenced
Struggling

Purpose being……

Passing time here
Raising children

Random, chosen

Repeat the process

Why?

They say there is…..

There is this God thing
Watching
Guiding
Judging
Plodding

Cerebral madness
Numbing projects
Played out ideas
Like stacked up Dominos

Just one whisper
A Gust of wind
Or rolling boulder
And mad destruction

Passing time here
Reboot……..

Next

~suenamae~

Continue reading

What feeds my soul

What feeds my soul
You do….
It does

what ever in the moment is…..

suffering loss

tears
cascading over flesh
salty like the ocean

waves
like giants
hungry

gnawing
voracious
and unrelenting

sweep me up
hold me
take me in
and swallow me

bathe me until
I feel
no more…..

Pain