Cindy @cynthus17 - Tumblr Blog

still calling it Fashion

I talk a lot of smack for a person who faints after standing too long

#ehlers danlos syndrome #ehlers danlos life #ehlersdanlosgrrrls #potsie #postural orthostatic tachycardia syndrome #zebra strong #disabled and cute #cpunk #my writing #my poem #chronicallyfabulous

#ehlers danlos syndrome #ehlersdanloslife #ehlersdanlosgrrrls #potsie #postural orthostatic tachycardia syndrome #zebra strong #disabled and cute #cpunk #my writing #my poem #chronicallyfabulous

I like things

Possibly unironically

I can’t be sure as I sang along with

Alanis Morisette in the 90s

And am now unsure if my definition of Irony

Can be trusted.

Am I openly old enough

To have sang along with an actual radio

In the 90s?

While time has left its marks

I also enjoy stickers and optimism

So who’s to say.

I am (possibly) unironically myself

Despite the caricature visage

Some would paint over

My actual face.

The indelible lines

Of a life lived well

Adventures bravely had

Cannot be painted over

Those imagined mocking colors

Running immediately

In the face of my own expression

The welcoming, self assured smile

That prompted the fearful and inept

Paint job.

Cover your own face if you wish

Mine is nakedly glorious

#fortyandfabulous #my writing #my words

It’s called fashion sweetie, look it up

2025 update, still calling it Fashion

#forearm crutch #mobilityaid #disabled and cute #cpunk #chronicallyfabulous #ehlersdanlosgrrrls

I thought I had to

Change the unchangeable

Solve the unsolvable

To gain entrance back

Into the life I had already

Made for myself.

I’ve been so very tired

And only now can I see

That I’m worn down from

Chasing an impossible dream.

The Quixotic plays beautifully

When trodding the boards

But for real life

The infinite beauty of reality

Is the only path available.

Redemption cannot live

Beyond what’s possible

It instead resides

In what already is

The universe already having bestowed

The beauty of this moment

Valued against its fleeting nature

Precious for its uniqueness.

I cannot give

What I will never possess

And I refuse to lament that

In favor of savoring what I am.

I am imperfect

So are we all

And if I can accept that

And you cannot

Then I bid you a fond farewell

And perhaps on some nights

When you are tired

Of running and pretending

You will look towards the stars

And be thankful for yourself

As you truly are

And not as you wish to be.

Onward I must sail

As adventure is always ahead.

#cpunk #chronicallyfabulous #my writing #my words #disability pride #ehlersdanlosgrrrls

big mood

#guess who’s coming to dinner #chronicallyfabulous

Being different

Is a state that terrifies

So many.

When there is no choice

And different is simply

What and

Who you are

You learn.

You learn to live out loud

To embellish with sparkles

That which others might hide.

Boldness becomes a valiant shield

To defend with outrageousness

Against the despair of others.

Tactics include

Sharing love and acceptance

For all

A hand reaching out

More powerful than any slings.

I will share my unique dazzle

And meet your fear

With my own brave and steadfast

Determination and pride.

Knowing who I am

Sets my own stage

The heckled edits of others

Simply part of the raucous show.

You are welcome to join the party

As it will be held regardless

And you might as well

Have your cake

And eat it too.

#my words #my writing #cpunk #chronicallyfabulous #mobilityaid #ehlersdanlosgrrrls #disability pride

a smol bear

#cats #spooniepets #smol bear #bagheera

walker bling ✨

#cpunk #ehlersdanlosgrrrls #potsie #chronicallyfabulous #ehlers danlos syndrome #postural orthostatic tachycardia syndrome #cutieswithcanes #mobilityaid #mobilitymonday #rollator

Perhaps there are things you’d like to know about my condition. This would be understandable, my doctors have had to embark on a learning curve, and for me knowing my own body will always be a work in progress.

Perhaps you’ll say you’d like to understand, but your fear pulls you the other way. Some aspect of my condition might challenge a comfortable previously held notion about me, or even more troublingly, call your own past behavior into question. Knowledge of my mysterious and rare body could be a dangerous and volatile acquisition, better left avoided.

You wait for me to tell you that I am the same as I was, not to be feared. Your friend to be counted on to do without so that you may pull ahead. To eat my pain and sorrow myself to leave room for only your own.

But perhaps you should fear me, as I no longer wish for you to understand. I can see that in fact you have always understood, better than I, for how else could you have known what to steer away from? I no longer wish to help you run from the truth- the truth is my lifesaving home, and I live there now. The darkness of your comforting fictions cannot shroud you as well when pierced by reality’s bright light. As you lash out at me, desperate for cover, it is I who now understands. I felt the same lashes brimming inside me during my many lifetimes of your unseeing gaze. My steady kindness to you is a choice, often hard won and hotly contested. But I will not look past others the way they have looked past me. Knowing that I am worth seeing brings all souls into my vision, all of us worthy of our places in the world. Everyone among us entitled to own our space, to know and be known.

Perhaps there are things you’d like to know about your own condition— and I will continue to believe in you and your strength to one day find out.

#my words #my writing #cpunk #chronicallyfabulous #chronic pain #ehlers danlos syndrome #potsie #postural orthostatic tachycardia syndrome