Poetry

The Ehlers Danlos Syndrome Dance – a poetry jam

Photo by Khoa Vu00f5 on Pexels.com

By: JANA GREENE

The foot bone’s connected to the leg bone,

but the joint in between them protests.

“Ankle here,” it says. “And I’m wobbly,

I think perhaps you should rest.”

But no time for that, I say, holding on to my cane.

The leg bone’s connected to the knee.

And to say it fairly,

those knees are barely

even attached to me.

The knee bone’s connected to the thigh bone,

and true, the bone won’t bend,

but where the thigh bone connects to the hip bone,

that socket pops out and back in.

The hipbone’s connected to the backbone

and they don’t really get along.

Where the backbone’s connected to the neck bone,

it doesn’t feel too strong.

And that neckbone connected to the head,

where all my worries are made,

If dem joints dem joints gonna walk around,

I’ll need a mobility aide.

So, strike a Gumby pose with me,

pop and crack in a stance,

for all the ableist world to see

your Ehlers Danlos Syndrome Dance!

Spiritual

When you feel like a “Lovey,” Remember you are Loved

By: JANA GREENE

When my second daughter was born, I wore a very lightweight sea foam green bathrobe at the hospital. I think I had bought it from Walmart. It had a soft lace around the edges, which were soothing for her to feel when she was nervous. It was inherently nothing special, but she glommed onto it, and it quickly became her security blanket. We called it “Lovey.”

She still has Lovey. She is 30 years old now, and throughout the years, Lovey is about the only thing that conveyed in all of her moves. I believe she still might sleep with it.

Much like the Velveteen Rabbit, Lovey became a shred of a thing. It had been snuggled, cried on, donned as a costume, barfed on, and worn as a turban, her whole life. It has shrunk from tumbles in the dryer. Like the Velveteen Rabbit of lore, Lovey became puny with wear, shredded by love.

As a chronic illness and pain patient, I feel a little like Lovey these days. I don’t feel identifiable as who I issued to be.

When I leave this world, I will leave it with my body in shreds. My hope is to be softer than when I came, ego shrunk from tumbles. My purpose only to love and be loved.

I feel shredded lately. My pain levels have been monumental. It’s almost more than I can bear, to be honest.

The trick is, I think, to realize that sickness is not the only thing shredding me. My joints – all 360 of them in the human body – are essentially being held together with silly putty instead of Gorilla Glue. My Earth Suit makes faulty collagen. Everything hurts, almost all the time.

When I feel leveled by the pain, I need to be mindful that illness isn’t my only leveler. I’m also being loved, and I know that. I’m very grateful.

All of us Loveys – tattered, worn, and threadbare – have to remember that we don’t lose our value as we experience the transition from being something the world recognizes and can easily determine the function of, to something whose purpose might not look as obvious.

See, my daughter’s lovey had only become more valuable to her. The fact that an old robe can find new life as something completely different is oddly comforting. It meant the difference between being an article of mom’s clothing, and becoming a beloved “friend.” It meant the difference between the Goodwill basket, and an honored place on her pillow.

So maybe I’m not breaking. Maybe I’m becoming. And in this season of great difficulty, I choose to believe the latter. I have to hold on to hope.

Puny from wear, shredded with love.

God bless us, every one.

Mental Health · Spiritual

When Thanksgiving Means Canceling Perfection

By: Jana Greene

It’s not a great Thanksgiving.
It’s not even a good Thanksgiving. About to launch into avent sesh. Sorry in advance.

The whole entire day was a comedy of errors.
Oh my God, the anxiety. Plus, I woke up and couldn’t eat food. I’ve had four bites of oatmeal and about a tablespoon of each token TG food all day today. That’s it.

Food is my love language. And Thanksgiving is a Foodie high holy day. And I mean absolutely no sacrilege. Just facts.

I’m having a nasty gastroperesis flare, which is setting off a pain flare, which…you get the picture. My left side of my face had been numb for hours. Auras and face numbness are my harbinger off migraines. It’s what let’s me know it’s coming.

I’m sharing my day, I hope maybe someone else who is inordinately emotional today won’t feel alone. There’s this Norman Rockwell standard, you know? We expect it to be some type of way.

So worsening pain, complex family dynamics, cranberry sauce boiled over in a sticky mess. My knee is going out. I’ve been up since 4 am. I’m tired, weepy, emotional, and could easily slip into sadness.

Thanksgiving is a loaded holiday for me, as there is no contact with my family of origin. Sometimes I get tired of my life behind “pre-“ and “post” sobriety. Before and after. SO much is old me vs. new me. I’ve reinvented myself and I’m kind of proud of that. My new life is my heart’s desire, but sometimes I miss the key players who shaped me. It’s so odd. And painful.

But I can only be but so sad, really. Then I barrel through it.

When things started going sideways today – which was right outta the gate this morning – I said to myself, “Well, I guess I have a spiritual thing to learn today that can only be illuminated by a certain set of circumstances.”

My old spiraling behavior rears up on occasion. It is born of exhaustion, making mistakes, and burning myself out.

I’m taking the “shrug” approach. Whelp. I guess this day wasn’t meant to be easy. Maybe it’s an opportunity to grow.

Who the heck even knows. Certainly not me.
This is how I’m trying to learn to cope with what passes for normal life in 2021: Own the mistakes, ask what very difficult things are teaching me, be deliberate about gratitude (and STAY deliberate about it.)

I’ve been doing a lot of work in acceptance. And truly, I admit to being outrageously blessed. Just not blessed with perfection, in ANY area.

At some point, being imperfect has to be “perfect” enough.

By the way, having your therapist tel you she’s proud of you? Yeah. It doesn’t get a whole lot better than that. ❤️