Tag: writing

A Chronic Illness Wish List

By: JANA GREENE

I need to throw a little tantrum right now. Not a full-on nervy-b, but a proper little hissy fit.

I’m so grateful for the health days lately that have allowed me to do some normalsauce stuffs recently, but Ehlers Danlos is a chronic pain and illness condition. It doesn’t take vacations.

My whole body is made up of faulty collagen. The last two nights (and eapecially today,) the pain flares had been almost unbearable.

So here Is my stupid little list of wishes, compiled to get my frustration under control, and maybe remind you that you’re not alone if you’re hurting too.

I wish I could pop my shoulders out of the sockets like Ms. Potato Head, and replace them with sturdier, less excruciating shoulder joints. They pained me so severely last night, I writhed around trying to get comfortable for several hours instead of sleeping.

I wish it didn’t feel like oyster shuckers have been wedged under my kneecaps, feeling like someone is trying to jimmy them off every day.
I wish my hips didn’t roll around and sublux levery dadgum day. I can pop the joint in and out, and it’s not a fun party trick. It’s agony.

I wish I had one of those cool new “exoskeleton” robot suits. Have you seen them?? They hold you together from the OUTSIDE. Like a Transformer. I would t even care that I looked like a weirdo.

I wish people disnt give me the stink-eye when I need to park In handicapped. Look at her, walking Into the store! What people dont realize Is that every step can be a real challenge. You never know what a disabled person is really feeling In their bodies. Sometimes the fatigue makes every step seem Impossible.

I wish people’s understood that different days require different mobility aids. Sometimes you will see me using a cane. I need it for stability on Sundays and or because the pain is making it hard to walk other days. I don’t use it at all and I know that seems really confusing, but it’s quite simple – there are good days and bad days.

I live every day fully aware that I will most likely lose mobility from here on out, so the days I don’t need my cane I revel not needing It.

I wish people understood the fragility of an EDSers body, and the strength It takes to keep going. We are fragile, but unbreakable.

There is little to no stability in my joints because most of my lax connective tissue. Pain and injury are the result. I once broke my ankle in two places from stepping out of bed to go pee in the middle of the night; it just rolled. And lest you think I’m just a big wimp about pain, I walked on that ankle for eleven days before I had it looked at by a doctor. My threshold is very high.

I wish I had a decent immune system. I don’t.

I wish the migraines would cease and desist, but they are tied into some of my other genetic mutation conditions. They are a whole other Issue altogether.

And I wish I were way more zen about pain. It teaches me things, true. But I simply get tired of this shit. I am trying to live transcendently – find joy beyond suffering and camp out In the assurance that God’s got me (and I get by with a LOT of help from my friends.)

I currently have a post-it scrawled with medical appointments I need to make on my kitchen counter. Like I NEED to make these appointments – for specialists, physical therapy, another cortisone shot in my knee, major dental work, a trip to Duke next month for gastroperesis treatment, and labs galore. It had been on the counter for weeks and every day I pass it and get a mini-panic attack, on account of I’m simply overwhelmed.

Because this IS overwhelming. My job is to stay healthy enough to have a quality of life, but I sure could use some PTO days to just NOT feel like this.

Life is challenging, but we are never alone. That’s important to wish for – for God to use my crappy conditions to make others feel less alone. That’s the best reason I can come up with for any kind of suffering.

In our suffering, let’s lean into one another.

Bless us, everyone.

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Housekeeping

Photo by JACK REDGATE on Pexels.com

By: JANA GREENE

Maam, that burden looks heavy to me.

I know because I’ve carried it.

And sometimes I still pick it up,

when I forget I’ve already buried it.

When I remember it’s not mine to carry

I can “clean house” again.

If I leave my “muddy sneakers” outside,

I control what I track in.

Housekeep your sweet spirit,

leave your burden at the door.

Be tender with your heart,

it’s been wounded to the core.

We can lift the heavy things,

Sometimes we all must do it.

I’ll carry yours

if you help carry mine,

and together we’ll get through it.

Yes, together we’ll get through it.

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Every Day Precious, Every Moment Counts

By: JANA GREENE

My GOD, life is precious.

I was going to write about the subject of today’s writing prompt, which is “Describe your favorite childhood book.” How very light, fluffy, and FUN! Maybe I’ll write about that tomorrow. I’m not really feeling it today.

Yesterday, my husband and I went for a Sunday convertible drive, the weather was so lovely. We drove all the way down to Fort Fisher like we usually do because (I realize this is kind of nauseating) that’s where we had our very first kiss. We stop and kiss in that exact spot, and notice three guys with motorcycles watching the kiteboarders in the inlet.

“What a beautiful day for a bike ride!” we said aloud at one point. We admired the view for a bit. It really was a beautiful day.

We started back up Fort Fisher, stopping to take a few pictures (to use on my blog) and we heard sirens. An ambulance raced past, heading to the end of the long road. Then a firetruck. I am nosy, so I wondered aloud, should we go see what’s happening? Something told me “no.” Something told me (correctly) that I couldn’t handle whatever “this” was. We decided to head home as a state police car barreled past us. He was flying. The emergency presence was alarming…

CB and Kure police. State police. A fire truck. And, an ambulance. We both had a sick feeling about it for some weird reason, and it was a feeling we couldn’t shake.

Later in the afternoon, when we got home, we found out it was a motorcycle accident that happened minutes after we left Fort Fisher. Minutes.

Today I read the news that the motorcyclist did not survive the accident. I can not stop thinking about him today.

There had only been three guys on motorcycles and a tourist couple taking pictures, (and Bob and I) down that long stretch of road. That’s all. I could remember the faces, which seems odd – that my mind – which is not so swell at remembering anything else – could conjure their faces.

Which one, I wondered. Which gentleman was it? The one riding a trike or one of the two men who were riding together. Was it you, Guy in the royal blue shirt? Was it the dude on the trike? Or was it the short one with long hair?

I may never know. But here’s what I DO know… Life is effing short.

None of those men thought a ride to Fort Fisher would be the last thing he did on this earth. How absurd that someone in their prime of life would go for a bike ride and never come home? I’m crying thinking about it.

So I pray for the family, because what else are we supposed to do with these jarring realizations that this life is but one leg of an eternal journey. I’m so sorry for them. Their worlds make absolutely no sense today.

We have the time we have allotted and not a minute more, so what are we doing with the it? Learn to be present in the moment. Let the small stuff go. Enjoy the living daylights out of every minute. Which is difficult because in addition to being the most amazing ever, life is also the hardest, most bewildering thing ever.

In honor of the gentleman who lost his life minutes after we saw his face, I’m going to love on my family harder than necessary today. I’m going to be more aware in the moments with friends, which are so precious. Please take good care of yourself and each other today. God really does love you, and so do I.

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Paperweight (“It Seemed Like a Good Plan on Paper” writing prompt)

Art by: Jana Greene

On this second day of taking a cue from my favorite Author’s writing prompt suggestions, I bring you a little poetry jam. Anne Lamott’s prompt today? Write about: “It seemed like a good plan on paper.” This piece wholly turned into something completely different than I had in mind, as so often happens. I hope you enjoy, Dear Reader. From my paper heart to yours.

By: JANA GREENE

It seemed like a good plan on paper,

but Rock and Scissors intervened,

(even though I don’t remember

asking them to help me scheme.)

In “Rock! Paper! Scissors!”

it’s to the paper I relate,

because I don’t want trouble

(and have no need to double

down on all of that hate.)

Rock has tried to keep me down,

because that’s his only schtick.

Invite me to cry on his shoulder,

then pin me under a boulder?

That’s the oldest trick.

He tried to pull off his caper,

But my name is Paper,

so spare me your hullabaloo.

And Scissors, before you

start up with me, I’ve

a message for you, too.

Before you get lippy,

you best be damn skippy,

you know I will make it alive.

Hit me with your best shot,

shear me with all you got,

Go ahead and…strive.

Cut me into ribbons,

and as streamers, I will fly.

Fill me with words,

I’ll be a book by and by.

Drench me in deep colors,

I become a work of art.

Keep me as a journal,

and you’ll have a place to start.

Cut me in a million pieces,

and confetti I will be,

And then I will be everywhere,

a living thing, you see.

I will rain down celebration,

as was written at my birth.

I will peddle deep elation,

I’ll be a paperweight of worth.

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Falling in Love for the First Time (an Anne Lamott writing prompt story)

WRITING PROMPT: “Write about the first time you fell in love.”

– Anne Lamott, (A Writing Room)

By: JANA GREENE

I have a tendency to fall in love instantly. I fell head over heels in love with my husband nearly 18 years ago, but I’ve made lifelong friends that I’ve loved since day one. Dogs, cats, people I mentor – doesn’t matter. If my soul recognizes you, I can love you genuinely right away. I’ve hated that about myself most of my life (it’s illogical, according to this cold, hard world,) but I’m at such peace with it now. If people can hate without even getting to know a person, I can certainly love right out of the gate.

The fist time it happened was in 1983.

His name was Trace, and I met him at the skating rink. I still cannot hear Loverboy’s “Take me to the Top” without recalling the scent of Giorgio for Men and the whisp-whisp-whisp of his parachute pants as he whooshed by me in an eternally moving loop on his “peanut butters.”

Peanut butters – for those not in the know – are what we called those iconic brown rental skates at the rink – the ones that you tried not to think about the foot that was there before yours. Only the very popular, rich kids brought their own skates.

I was born with a painful and injurious connective tissue condition. When I was a kid, my family called it “clumsiness,” but it was actually many of my joints subluxing and dislocating constantly. I remember my ankles were janky that day, so I skated in a slow, steady loop, acting casual. Each time he’d pass me, he would wink at me over his shoulder. I guess because it was the early-eighties and we flirted like we were in a John Hughes film (what other template could we have used? Mr. Hughes defined our generation!)

It turned out, Trace was in the grade about me at the middle school. I was in seventh, he in eighth, and going to high school the following year. An almost-high-school boy liked me! That’s better than having custom roller skates!

And so began my first foray into “love.” And it was love, to some degree. I thought of nothing else but him. That evening, he asked me if I wanted to skate to the couples only skate. Actually, I think I was sitting on a bench festooned with neon colored patterns that glowed in the dark. When they cut the lights down, Journey’s “Open Arms” called us to the floor. I skated backwards and he forwards, but I saw nothing but his eyes. They were yellow-green, like a cat’s – but maybe those of a friendly cat. His hair was long, curly, and very blonde, like Sebastian Bach of the band “Skid Row.” And I was there for it. We became girlfriend/boyfriend that day and would be together off-and-on for the next couple of years – which is an eternity when you’re a teenager.

“I want to marry you,” he’d say, “and have lots of babies.” And I believed that’s what he wanted because his home was so unstable. We both wanted an opportunity to do better. Looking back, it’s a gigantic red flag, but my passionate 14 year old heart would not hear of anything less that marriage and babies. Oh the naivety!

Trace was wounded, in a way. And I worried about him constantly, which is another good indicator that this was different. He was sadness masquerading as a cowboy, in his hat and a pair of shit-kickers. I was sad too, but his love made me warm, and warm sadness is better than the regular kind, because any teenage couple worth their salt is plodding through angst. Me and you against the WORLD, right?

So I fell in love for the first time, with a boy from a broken home who called me his “angel,” and broke up with me because I was so afraid that he was going to expect me to do things after Prom that I canceled it altogether. I was terrified of intimacy; I simply was not ready. And he – being 17 – had “needs” that my Bible-toting, scripture-quoting, uber “good girl” self was not willing to facilitate. (Ugh. Could she not loosen up just a little?)

We had all the wonderful “firsts.” First couple’s skate. First hickey (“I burned my neck with the curling iron, Mom!”) First cheap but thoughtful necklace that turned my skin green. First experience with obsessing over a boy. First concept that I was adored by someone, and I was happy to adore in return. Of course, Trace was my first break-up too. I think break-ups teach us just as much about ourselves as relationships do. Maybe more.

Eventually it fell apart because – like every good John Hughes movie – there was drama. He had a rough childhood, and things were bad at my home too. Trauma-bonding does not make for the best relationship foundation. I moved away from Texas, and I have no idea what became of him. But I hope he is okay, and thriving somewhere with some special lady who is his “angel.”

First loves are practice; an art, not a science. We had all the standard-issue problems that teen couples do. But we also had stolen kisses behind the bleachers, sweet, corny love letters, and phone calls that ended with, “No, YOU hang up first…” “NO, you hang up first.’ “No, YOU” ad-nauseum so we could hear each other fall asleep.

He was such a sweet, troubled soul, and in truth – so was I. But all first loves should be equal parts magic and tragic, I think. It’s our first foray into accepting another human being for who they are, parachute pants, Peanut Butters, and all.

Blessed be, lovely friends.

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The Crying Canons

By: JANA GREENE

When I was a child, my parents sent me to catechism classes for a few months, before they decided Catholicism wasn’t for them, and I have a few spotty memories.

I have always loved big words, and I remember learning the concept of “canonization,” which is when someone who lived a really stellar life could be declared a saint. According to Wikipedia, it is also declaring a person worthy of public veneration and entering their name in the canon catalogue of saints.

The extent of my experience with “catalogues” was that Sears put out a “Big Book” and that thing was the epitome of childhood joy! The be-all-end-all; about three solid inches of dog-eared, magic-marker-circled laminated possibility. The funny thing is that when it came in the mail each year, I cried. I sobbed with overwhelming emotion. It was TOO. MUCH. If I had had the language, I would have said, “I CANNOT EVEN WITH THIS.”

There were tears later for excerpts from the Alcoholics Anonymous Big Book, but that’s a story for another time.)

How odd that despair and all-encompassing joy make us cry.

I still cry, but not in as much despair. At lease not most days.

Despair, when taken to liberally, only buys me more of itself. It confirms what every trauma of my life told you was truth. It makes me conduct life as if in mourning clothes – black and somber (but also a little bit enveloping and cozy.) Comforting because it’s familiar, and destructive for the same reason.

Here’s the thing: As far as I can tell, life is a tearful experience. No getting around it.

Tears are salty, either way. Whether they are generated by grief or extreme joy, there they are! Manifestations of our Big Feels, rolling down our cheeks for all the world to witness. No two spurred by identical emotion, each unique to the life experience that prescribed it.

I suspect that God is forever traipsing along behind us, collecting every single one; and not minding a bit to get his hands wet (or even snotty.) I don’t know why the image of the Almighty Cosmic Creator collecting our tears is so comforting to me. It’s validating, I guess.

So many of us were sprinkled by “holy water” to be baptized in the church tradition. How odd then that the sprinklings that we offer God so often roll down our cheeks. I like the thought that none of it goes to waste; that all tears are valid. (Are tears holy water too? Maybe they’re the holiest.)

I laugh more than I used to, too. Sometimes at the absolute absurdity of life. I mean, you can’t be serious, right? This place is crazy, man! Humanity is writhing right now. Each facet of our existences seems upended and spent. We are divided, swamped with information, fed a diet of doom, and all of this can make a very “connected” world feel very lonely.

Our instinct is to make our woe a solitary endeavor, but we’re all connected. Joy to joy, woe to woe. As best as I can figure, there are a trillion filaments of light woven between and through us all. That’s what vanquishes the darkness.

So yes, I cry. Some days, quite a bit. There are many times I “cannot even,” when my physical pain and mental/emotional pain are trying to outdo each other in a footrace, a good, cleansing cry is where it’s at. Not as a concession to the pain, but to spite it.

Being Earthside is wretched, brilliant, brutal, beautiful, and exquisite. It is a predetermined number of dog-eared possibilities.

But I’ve made it through 100 percent of the mess thrown at me so far, and so have YOU. That’s a pretty good track record. All we can do is try not to let our tears make us salty toward an open-wound world.

We become venerated by our tears. Canonized. Made whole and sainted, I think. All the really cool saints weep on the regular. I believe Jesus did, and why would he not? He rejoiced with weeping and wept with deep, abiding sorrow. He himself is the (Big?) Book of Life, not constrained by the two-thousand years of dog-eared, magic-marker-circled laminated possibility we have assigned him and called “Truth.”

Teardrop by teardrop. Emotional outburst by emotional outburst. Primal screaming session by primal screaming session. Whatever it takes to get through this stellar experience of life together.

Blessed be, friends.

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Headspace (and Other Wide-Open Places)

Photo by Tim Mossholder on Pexels.com

By: Jana Greene

Maybe the first eleven years was just practice.

Maybe my first blog – my first child in many ways – was preparing me to write more transparently (and ergo, more dangerously.) It would only make sense. I had an agenda with my first blog, “thebeggarsbakery.com,” without meaning to. The goal – even as it was unspoken to myself – was to be a grown-up “Writer” with a capital “w.” I wanted to carry answers to the big questions confidently, armed only with a background of religiosity and unrealistic expectations. I thought maybe I could even have one of those thingies that everyone else found so attainable, but I have never accomplished – an actual career!

What’s it like to have one of THOSE? I’ve had many jobs throughout the years, but none that brought me fulfillment or made me financially successful. I’ve wanted to write for a living since I could hold a crayon, but although I’ve been published in a national magazine (once), I still just write for therapy and funzies. Maybe that will change one day, but now I write from a place of peace, if not resignation. I’m okay with the fact that I may write for an audience of 1,900 (the total readership of my flagship blog after 11 years,) or 50 acquaintances, or a dozen close friends, or just the two – myself, and my endlessly supportive husband (who has read every word I’ve written since August of 2006, and even some archival stuff.) All of these options are okay with me. I don’t need to get it right, I just need to get this moving.

I MUST write like I must breathe (ugh, how dramatic! But it’s breathwork to me. I’ve recently started attending a writing workshop by my favorite author, Anne Lamott, and every little word she writes is magic because she shares her whole heart, not just the shiny pieces. What a time to start a new blog, I thought. I’ve shared a lot of shiny pieces, but I’m ready to share the rest of it.

So, welcome to my headspace. But more succinctly, welcome to my heart-space. I write in spite of the fact that I still don’t have quick answers to the big questions. My words will come at you, stream-of-consciousness-style. Although I am under no obligation to make sense to you, I’ll give it my level best!

My goal is to write a bit each day; that is my challenge to myself. I aim to “write clear and hard about what hurts,” as Ernest Hemmingway opined. Doesn’t matter about what.

Writing hard and clear about what matters is all I can asplire to. I’ve done myself a disservice in the past by writing about only what is hard and what is clear, since so much of this journey is neither (and/or both.)

And it’s all God’s fault. The Creator of the Cosmos wouldn’t stay in the little box-on-wheels the church gifted me, even though I implored him to keep his arms and legs inside the vehicle at all times. You know, for his own safety and mine. He wouldn’t, and so I stuck a finger out the window, just to feel the wind, and now I’m ruined for stale spiritual air heretofore.

Maybe it’s all just practice, ya’ll. Maybe practice is where it’s at anyway. The best things in life are not the things we collect, but what we put into practice in our hearts. Day in, day out, practicing radical love – even when it looks sloppy and we feel unhinged.

So pull up a chair and come alongside me. There will be pearls of wisdom, and absolute drivel, because my headspace is full of both (and more!) Engage with me – I want to know what makes you tick, Dear Reader.

Let’s get this party started, with open minds and hearts. Blessed be, friends. ❤

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