Tag: mental health

Hardness, Heaviness, and the Gift of Unexpected Bliss

By: JANA GREENE

Today it’s raining like God has something fierce, like God has something to get off his chest. A bone to pick with humanity. Not a sprinkle but a torrential downpour, and like everything else right now, it comes hard and heavy.

I don’t know about you, but I’m getting tired of “hard and heavy.” As I sit sipping coffee on the front porch of a little log cabin, I consider society and watching its apparent downfall. And I let my mind play pretend for a bit. I am a pioneer woman, hearty and fulfilled with the simplest of pleasures.

Never mind that there were no Airbnb’s on the “Oregon Trail,” (Blue Ridge highway?) only thoughts of sustenance and probable dysentery. Never mind that I would be long dead if that were the case, because childbirth proved nearly fatal for me bringing my two biological children into the world. I come from weak, generic- European stock. We are sickly, pale, and given to dying in childbirth.

But I consider my surroundings as if it were 1847 and I had arrived here by hiking on sturdy legs and enduring hardship, not by Honda Insight. There are berries in these woods probably, and the soil would be fertile for growing vegetables. There are deer for venison (I’m certainly not hunting and killing it – I’ll leave that to the menfolk) and other rodent-based meat – squirrel and rabbit, which I’m also not killing, but would eat if there was no Chick-fil-A nearby.

This is my first vacation since receiving a Chronic Lymphocytic Leukemia diagnosis. It’s good medicine to sit in the woods and contemplate your fate, it turns out. I walk barefoot on the dewey grass. I hug the big oak tree that shades the cabin and thank it for its shade. I listen to Teddy Swims and old Van Morrison on the cabin porch, rocking and blissed out.

I literally stood outside in the pouring rain with my face skyward with the intention of screaming into the void, but ended up thanking him for showing up and washing away my attitude with his tears.

The air is God-breathed, my ears are filled with birdsong. And even though is it’s pouring rain; I am glad for it. I watch the clouds tuck the mountains in goodnight. I love a good tucking-in.

I think this property was a Christmas tree farm at some point. Frasier Firs line the property. I guess we were all something else at one time or another. Each phase subject to its own rejoicing; each phase subject to hardness and heaviness. I reckon the land groaned as it weathered changes, just as I do now.

Every journey we find ourselves on – whether involuntary or self-led – is too much at some point. Things are a little too much now. So I groan. Oh how I groan. Oy vey!

We are home from our long weekend getaway now. I’m trying to carry some of the contentment that came so easy in the mountains into today. Nature made an investment in me during he course of our mini-vacay, and I’m trying not to squander the peace it gifted me.

Turn off the news and quiet the weeping and gnashing of teeth long enough to remember that God is close to the broken-hearted.

I am sick, but I am surrounded by love – even in the suburbs where the air does not carry the scent of God’s breath. Even when I’m spiking a fever at the least opportune times, or angsty about the state of the world.

Pain is a constant companion, but I’ve found it is more effective to run a three-legged race with it than to deny it altogether.

It is a part of me, and hating it ultimately ends in hating myself. So, I walk with it daily, with it. Running with it ends up tripping me up. Go one day at a time – the same way I got through getting sober.

Now that I think of it, perhaps pain is like my conjoined twin; one that dislikes all the things I love. We have to compromise, or nothing gets done. At any rate, it’s here to stay, and that can be the hardest, heaviest thing of all. This might sound defeatist, but it’s just acceptance. And as long as there is still nature and hugs and the Spirit of God, I can accept it with some measure of grace. Even as this land groans.

I hope your hard and heavy era passes soon, and you can find some peace in this crazy world.

Blessed be, friends.

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Life’s not Fair (But it’s Still Pretty Good)

Peace ‘n blessins

By: JANA GREENE

Being diagnosed with leukemia on top of managing a half dozen chronic medical conditions has made some folks state with a vague indignation:

“That’s not fair.”

And in response, I can only say “no shit.”

Bless them for recognizing it’s too much. Because it IS too much. But the truth – whether you are a believer in Jesus or not – is “too much” is a normal unit of measurement for the bullshittery we must endure in this life.

“It’s not fair” always takes me by surprise. It’s like, Huh. Whats that like…thinking fairness was a viable option in the first place?

I think of things should be fair, of course, and I will try to advocate against the mistreatment of others. But sometimes “others” are not the problem…standard issue humanity is. Our bodies get busted, our minds get screwy, our spirits falter.

Where one person fights health woes, another might struggle to put food on the table. When one is brokenhearted, another worries about her children constantly. Job troubles, anxiety problems, the list is endless.

If you’re really lucky, you won’t have to contend with all the above simultaneously, but perhaps you have. Or are. I have been all at once before, and I guess it lent me an anxiety-laced sense of a transcendent acceptance (whatever that is. I’ll have to ask my therapist.) Anxious some times, yes – but accepting.

I’m not angry with God, not anymore. , I’ve survived a bunch of really agonizing things, and somehow managed not to pick up a drink in 23 years. And that’s astounding. I never expected sobriety to “stick” for me, and I’m befuddled that it has to this day.

I pretended I had strength, until I did. God and I came to spiritual fisticuffs, and he won when I surrendered. White light meets white flag. Something shifted.

It was confirmed to me during the hard years what I’d known all along – life is not fair, but it’s really good. Even with cancer and alcoholism. There so many beautiful things in this world to appreciate, and beautiful people.

Yes, it’s “too much” sometimes – walking around in achy flesh, on a gravity-bound planet that doesn’t seem to get your vibe. But keep vibing, and so will I.

Occasional freak-outs will 100% happen again; I’m starting to think they have just as much right to be part of our vibe as does our holiest, Jesus-trustin’ selves. You know, for the sake of fairness.

Blessings.

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Triggers and Glimmers and RESEARCH, Oh MY! (my CLL Journey) – Part 1

Photo by Tara Winstead on Pexels.com

By: JANA GREENE

Tomorrow I will find out what stage my Chronic Lymphocytic Leukemia, as well as my prognosis. Sunday, I had a little nervous breakdown – nothing that would send me to a grippy-sock vacation, but enough that I purged three weeks’ worth of tears in one flail swoop. I really let it out, which ended up being a good thing, even though I tried to resist The Big Cry up until then. I was afraid if I started, I wouldn’t be able to stop. And I was right – I didn’t stop for hours. But eventually I did, if only because I exhausted myself.

Monday, I felt a little better.

Tuesday, my nerves started gearing up again.

And today – Wednesday – I have been up since 2 a.m. doing “research.”

Now “research” by a person such as myself, means obsessing over whatever the Internet says my results are. The internet gives only two types of medical information – the shit that paints a gloomy picture, and the shit that is so clinically detailed, nobody outside of medical school would understand it.

I have berated myself on a number of occasions because I like to think I’m intelligent(ish,) but I cannot follow the concepts that keep the human body going. There are too many numbers, symbols, letters, reactions, tests, and charts. I was lost at line 1 of every article I read.

I am not medical-school smart, obviously. I am an empath who can micro-read the slight variations in a tone of voice, miniscule body language movement, even a “vibe.”

A genius at vibing, which frankly has never paid the bills or helped me read a medical report. I can string words together pretty well – words are my art medium. I can understand some abstract concepts, but I am lost right now. And my brain has only one useful thing to say in all of this drama, which is – unhelpfully – worry. How many times do I have to surrender? Meditate. Go inward, Self. And for cripe’s sake, you failed 10th grade Algebra, so maybe stop trying to make sense of flow symmetry and lab results.

My head is a jumble already, what with a crash-course introduction to CLL Genetic markers? I’ve learned what some of them mean. Flow Symmetry tests? Pure sci-fi. Bone marrow biopsies? Not as bad as a spinal tap, but certainly no fun. PET scans? Makes you radioactive and entails a lot of waiting around.

But I have also learned that mine is a typically slow-growing cancer and is rarely diagnosed in someone under 60. Many people live years (being closely medically monitored) and there are treatments that typically help extend the life. I keep telling myself it’s “no big deal.”

That I already contend with chronic pain and illness on the daily, I’m frustrated with this additional issue. So, daily I find myself fluctuating between telling myself to stop being such a baby, and equal parts Oh my GOD. (And yes, I recognize that there are much worse cancers, much worse conditions out there … this is just my brain trying to hammer my feelings out of my noggin and onto a page, where it is much easier to reason with!)

The not-knowing is awful. I will be happy to close out my “research” study, after the appointment tomorrow. Knowlege is power (for real for real) and I guess that’s why I feel like a puny weakling right now, especially mentally. But ONWARD AND UPWARD. I am actively seeking “glimmers.”

“Glimmers” are simply the opposites of “triggers.”

I can focus on being triggered, and there will be plenty of reasons to be. The triggers that, well…trigger me. LIke: I am legitimately phobic of hospitals. The very word “cancer” trips me up. Thinking of how all of this will ultimately affect my family – HUGE trigger. How much is this going to run us, financially? Feeling like I was already sick, so what the actual HELL? There’s a little justifiable anger there, if I’m being honest. The pokes and prodding. The waiting rooms. The smell of antiseptic. Germs. Upended plans. Good old fashioned sadness.

Next, I think I’ll write about glimmers, and end today’s writing sesh with some positivity.

Blessed be.

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A Cancer Patient’s Prayer (my CLL Journey)

“The Hand of God” by Yongsung Kim

By: JANA GREENE

The Lord is my best friend, I shall not be alone.

He’s with me when I lie down on PET Scan tables.

He refreshes me with Living Water. when I’m parched with worry.

He restores that elusive thing called hope, even as I can’t lift my head.

He holds my hand when scary labs results give me panic attacks, and sits beside me in waiting rooms, waiting.

Even though I am dealing with cancer, I will fear no evil.

For the Great Physician is with me.

His Spirit is comfort to me, when I am poked and prodded, and the pain is too much.

He prepares a way where I see none, through presence of those he sends to support me.

He anoints my heart with love stronger than sickness, until my cup overflows.

Surely no matter the prognosis, goodness and mercy will follow me all the days of this precious life.

And he will dwell within this hurting body with me, strengthening me until it hurts no more, forever.

Amen.

(Based on the 23rd Psalm)

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I Feel this Down to my (Soul) Marrow – my CLL Journey

Me in my actual Happy Place, 2022.

By: JANA GREENE

Well, Dear Reader, things are trucking right along. A few days ago, I went to the hospital for my bone marrow biopsy – which was not quite as bad as it sounds.Almost, but not quite. Definitely no fun whatsoever, but as it turns out, I’m tougher than I’ve given myself credit for all these years. I straight-up felt like a badass, if that badass was scared shitless and masking the hell out of it, so as not to upset those around me worried about me.

And I don’t know how NOT to do that – mask for the sake of everyone around me. I can’t upset my husband. He is literally the best thing that has ever happened to me – my heart. I have to be brave for my daughters. They are processing in their own ways. And my readers – most of whom followed me from The Beggars Bakery – have watched me amass almost 24 years alcohol-free and they watch my recovery.

In recovery circles, you become very aware that people are watching you, seeing how you handle adversity and whatnot. I took on that mantle like a good People Pleaser, each year giving my testimony – every year, louder cheering when I would pick up my annual chip, but I hated the public speaking and fought nerves every meeting I ever shared at.

Frankly, I am cheering myself right now for staying sober, because F*CK! This is really hard.

But I’m kind of watching myself, being critical in a way I never was with anyone else’s tender heart, and why do I do that? Do better. Be more positive. God has a plan. Yadda yadda. Ugh. Beating myself over the head with toxic positivity because I know how to be toxically positive and laugh at every situation, but I don’t know how to do THIS.

Am I tough, or am I masking? Am I brave, or am I am I pretending? After all the scans and biopsies and scary medical stuff, I feel tougher. But I also feel rawer, tender in parts of my spirit – the pure and the shadowy – I didn’t know existed.

I was alright until I shuffled into the CAT scan room, so that they could guide the needle through my hip bone, into my marrow, suck out some of it, and punch a little piece of bone for biopsy as well. Because of a series of unfortunate events, I was by myself. Also I didn’t think anyone would be allowed back with me, but the waiting room had another waiting room someone could have been there in with me. But no. Just me and my thoughts, avalanching into numbness.

The team of three taking care of me were amazing – I could not have asked for gentler, more calming medical professionals – tried to put me at ease. But when I looked around, I saw the implements of the procedure, and had an internal freak-out. All I could think of was the Showtime series “Dexter,” which my husband and I LOVE and are currently bingeing. Drills! Sharp things! Syringes! Lord, Dexter would LOVE this set-up! I laugh to myself, then realize I’m just deflecting with humor again, a skill I hones early. Not that Dexter is funny – it’s just the lengths my brain will go to avoid feeling fear is ridiculous. I fought the fear to jump off the table and run…as if the joints in my legs would let me run further than the door.

“Okay, we are inserting the needle,” said the radiologist (forgive me if I mess up on the official job titles. I have seen a dizzying array of medical professionals in the past three weeks and it’s hard to keep them straight.) They had numbed me with lidocaine and put a little somethin-somethin’ in my IV for the pain. I could still feel it to some degree; I am very difficult to anesthetize. I feel EVERYTHING, mind, body, and soul.

The kindly PA explained that they were entered the bone. What a strange, awful sensation. Needles don’t belong there. But by the same token, I am so grateful that science allows them to help me in every way they can, and I say a quick praise for them. Then they said they were taking the marrow now “….almost there, almost there, almosttttt….” and I yelped because I could feel pain and pulling. Next was the bone punch. Mother of GOD.

Go to your happy place, I said to myself….that little house in Wimberley, Texas, with a stream out back as clear as bathwater, and full of little fishes. The grass is damp and glossy because it’s morning. There are bluebonnets, of course. And I see a sly little water moccasin swimming upstream a bit. I am not scared at all, just give him a nod as he slithers on his merry way – he belongs here too.We ALL belong, in my happy place. Van Morrison is playing in the little house up the hill. I am eating s bowl of Blue Bell Banana Puddin’ ice cream, while I dangle my bare toes in the clear water. Ahhh, so cool. It smells like Texas here. It smells like home. It is beautiful weather, not at all hot. And the creek is making tinkle noises, and I look up to see my husband, smiling, and…

“You’re a rock star!” the Tech said, bringing me back.

“You did SO good!” “You’re so BRAVE.” “Treat yourself to something special today!”

These are all things I said to my kids when I was potty-training them, and with the same inflection. And I was not mad about it, nor did I feel patronized. Dammit, I received every kudo. Talk sweet to me. Tell me I did a good job. (A sticker on my forehead, please?) Every comforting word was exactly what I needed to hear as a scared little girl whose screams went unanswered.

In case you are wondering, I did treat myself to something following my marrow biopsy. Something decadent and extravagant. Something I have been denying myself forever, because GOSH DAMN, it’s so expensive. It costed me much, but rewarded me more.

I had myself a big old cry. I let myself be sad about all this. I didn’t tell myself to get it together. Me alone with my thoughts – we all cried. And then we felt a little better. Until we felt sad again. And then hopeful. And then just raw. But it’s okay, not everything needs to be anesthetized. Maybe I can even cheer for a myself, for a change. Atta girl! This is still my “testimony,” and we shall see how I handle adversity and whatnot. I suspect it will be a mixed bag.

This is hard. Writing helps. Thank you for sharing this journey with me.

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Doing it Scared (my CLL Journey

Okay this is the proof I got out of my actual pajamas yesterday, if only for an hour.

By: JANA GREENE

Hi. In the interest of journalistic integrity (haha), I feel like adding a disclaimer of some kind to the entries I’m going to be adding in Words by Jana Greene. Because I’m a writer, I like stories to have a clear beginning, middle, and end. I like when I can weave the narrative in clever ways or end up with a cohesive piece.

Yeah, this is NOT that.

When writing about this journey in particular, I am writing stream-of-consciousness-style, and if you don’t want to read me because this page may be full of incorrectly punctuated, rambling, seemingly random words, I get it Sis. I am not over-editing, because that breaks the intention of sharing my heart and makes it sort-of clinical in a way. I’m going to get plenty of “clinical;” this is the opposite, I think.

Yesterday, I had a rollicking good afternoon. Weirdly good. I put on a dress, asked my husband if we could go to dinner. I’m so tired of having cancer-ese language in my head.

I did my makeup, which happens with the relative frequency of a solar eclipse, and my hair – which is very long and very thick, and EXAUSTING to my hypermobile shoulders. And THEN – after alllll that – I look him dead in the eye. “Baby, I’ve used every ounce of my energy getting ready. I’m exhausted.”

“It’s okay,” says he. “Want to order in wings and binge-watch Dexter?”
GOD, I LOVE THAT MAN.

So, lickity-split, I changed back into my “Agape Against the Machine” oversized t-shirt, ordered food, washed off every bit of makeup, plopped on the couch with my beloved, and ate chicken wings King-Henry-the-Eighth style in a MOST unladylike fashion with what little energy I had left.

The energy of a sick person is finite. And some days, it is more finite than others. “But you just DID it,” they say. “Yes!” say I. “And that’s why I can’t do it again!”

Doling it out over the course of the day must be deliberate. We don’t just “do things,” we do things that deplete our body’s energy ration in parcels. The parcels are not of our choosing, even. We wake up, take stock of pain, and – if our pain to exhaustion ratio is high, goals for the day get voted off the island until you are left with one crappy thing to do that isn’t even fun. Disabled bodies are utilitarian, and have no time for frivolity, on low-energy, high-pain days.

The ante was significantly upped with the cancer diagnosis June 13.

Tomorrow morning, I go for an invasive bone marrow test, which by all accounts SUCKS. I feel like up until now, I’ve been pretty accepting of my diagnosis and kind of positive about all this, but I ain’t feeling brave this morning. Fight, Flight, and Fawn all have seats at my breakfast table right now, and they look a hot mess.

So, today, I interrupt my own sometimes-toxic positivity with a special news bulletin:

I’m scared.

For the first time since the diagnosis, I am legitimately scared. I don’t know what triggered the fear (having cancer, probably – ha) but as tomorrow’s test looms, I’ve decided NO THANK YOU PLEASE, I don’t want to do this cancer thing. But thanks for the offer, I already have a full schedule full of trying to stay alive. I already gave at the office. Dance card is full. I have prior engagements. But thanks for stopping by!

But that’s not reality, so I just need to be able to say, “I’m f*cking terrified.”

When a disabled person gets cancer, there are “people of the Lord” who assume God’s got it OUT for me. Why else would he “allow” all of this? Or this secular quip: “You’re the unluckiest person I know.”

But I don’t feel unlucky. I am surrounded by light and support and love. I just feel scared today, with a chance of intermittent sadness. Not strong. Not perky and upbeat. Just run-of-the-mill scared. I feel both: Scared AND lucky to have such an amazing tribe helping me make it through.

So I’ll shut this laptop, and light some candles, and get into a quiet spot, and breathe deliberately. I might take out my tongue drum and play some tones, focusing on each one as it completes its own life cycle of vibration, letting the sound take my fear down a buttonhole. Light some sage, let it’s perfume reassure me. Pray honest. Do some breathwork. Maybe I’ll get into the paints and make a mess today. Talk to God, and listen for his answer back, which can come in a myriad of ways – you just have to have the awareness to hear it. (Just ask for greater awareness of the Divine. God wants us to have the peace that passes understanding. He is not stingy with it! Don’t believe me? God lit in the forest by yourself for a while and receive. I highly recommend.

These are some of my tools to treat the fear when it comes. I acknowledge it, thank it for trying to protect me, but busy myself in art and music until it can stop actin’ a fool. And perhaps in the coming weeks, I will have another energy burst and put on the little black dress again, and actually make it out the front door! Maybe get all the way to a nice restaurant, where I’ll be able to stay awake, digest food like a normal person, and have a whole-ass date, start to finish. My husband deserves that – and so much more.

Signed,

Afraid in the Port City

Blessed be, friends.

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In the Weird Place (on my CLL Journey)

Photo by Chokniti Khongchum on Pexels.com

By: JANA GREENE

I have been feeling so yucky.

Pop-up fevers for no apparent reason? Check. Waking up at night drenched with sweat, when you are years beyond menopause (hysterectomy 2008) … Check. Crippling fatigue? Check. Covered in bruises? CHECK. Shortness of breath? Sometimes. Totally crappy immune function… bad luck or cancer?

Now these are all things that could have a different cause than my Chronic Lymphocytic Leukemia. Having been diagnosed less than two weeks ago, it makes me wonder though. It explains SO MUCH. But I have had symptoms for a long time, and have multiple issues that make me medically fragile.

Could be a Mast Cell attack (a comorbidity of Ehlers Danlos Syndrome) causing the fevers. Drenching sweat could be a menopause relapse or something, but since my ovaries left the building in 2008 when I had my hysterectomy, I know it’s not. Fatigue and easy bruising could be my Postural Tachycardia Syndrome (or result from my own clumsiness.) Shortness of breath could be run-of-the-mill anxiety, which has constant since the diagnosis – sometimes holding my hand lightly like a lover basking in familiarity (oh HI, Anxiety! I know YOU); sometimes squeezing so tight, like an anaconda is strangling my nervous system

Here’s the thing – I’m in the weird place right now. I am carrying malignant cells in my blood, but I have no idea if the cells are sleeping and dormant for now or having a full-on rave going on in my body, techno music blaring, glowsticks swinging, chaos ruling.

I have an upcoming, invasive medical tests and scan. I don’t know whether the scan will show no spread yet (and thus be Stage 0 – which means no symptoms but cancer in the blood/marrow, the best case scenario – as it requires only “wait and watch” approach); or my body could light up like a Christmas tree and require treatment right now. I don’t know. And the not knowing is hard, no?

But God is providing so much grace to me and surrounding me with support. So, either way, I’m keeping the faith, and holding on to a hearty helping of dark humor. I have always found those two to be essential to getting through tough spots. I will find a damn way to laugh about things, y’all. Humor is to my comfort in a storm what a safe harbor is to a boat. And I know God walks with me through all of it, holding my hand just right.

Thank you for taking the time to read this and follow my journey. Everything is called a “journey” these days – probably because everything IS a journey – but this is one not too many people want to be a part of. I write to process and believe that going through something hard without sharing the experience is a waste of a terrible era. Others need to know sickness and calamity are part of life, just as much as promotions and clean bills of health. We have plenty of people pretending everything is FINE, when clearly *gestures wildly* it is not. Healthy people make being healthy SO EASY. Some of them just roll out of bed each day with zero pain. What’s THAT like?

God bless you, friends.

4

Skin Deep (or: Bonus Cancer)

By: JANA GREENE

Hi friends.

Send me your warm fuzzies, good vibies, and petitioning God for a good outcome today?

Having the skin cancer on my leg removed via MOHs surgery. Completely separate and unrelated to my leukemia, because, um…go big or go home, I guess? (*shrugs and cries simultaneously whilst rocking in fetal position, then gets up and deals with it because THEM’S THE BREAKS KID!*)

They biopsy around the legion (original legion has been removed) to get the margins and have a lab onsite to test each layer for malignancy, leaving the would open as they keep excising around it, until all cancerous cells are gone. It can take hours and hours.

It’s really not that big of a deal, especially with everyone else I’m having to contend with right now, health-wise. But I could do without the aggravation. But we all know aggravation is crappy at taking its turn, always rudely infringing on us at the least opportune times.

If you’re keeping up with my journey (I don’t know that it’s a journey solely about physical health (is it ever? we are not just our bodies, where our minds and souls live. Healing has to be a full-participation thing – and I’m going to be working on my spirit, mind, and emotional well-being with every bit as much fervor as I’m going to put into my physical self.

Until next time, blessed be. And thank you.

6

Morning Staff Meeting (for my Medical Conditions)

Photo by Anna Nekrashevich on Pexels.com

By: JANA GREENE

Dear Various Body Parts, Systems, and Self,

Good morning. Let’s start right away, shall we?

I see a nasty headache has decided to show up, which means (a) this will be a very short meeting, and (b) I’m in a crappy mood. So, LISTEN UP!

Migraines, did you NOT get the memo that debilitating headaches aren’t the THING at this time- that getting confirmation that Leukemia is joining our team overrides your meddling right now? That’s a write-up, mister.

*Nods to Leukemia, who is perplexed and unwelcome, and would like a word with the head-hunter than assigned it to someone whose health is already chaotic – the Grand Central Station of Medical Dysfunction, if you will – when it’s painfully (haha) clear that some of this should have been outsourced.

And Ehlers Danlos, you pipe down too, with your pain first thing in the morning. Did I participate in the circus as a contortionist in the middle of the night, and that’s why my joints are on fire? (Speaking of joints on fire, I can see we will be starting this day with a little of the Lord’s Lettuce.) Did I dream I was a middle-aged, chubby Rockette and pull my hip out in a pair sequined pantyhose whilst sleeping? Did a little cereal elf come replace my kneecap with cornflakes when I was sleeping, so that I woke up with a knee that functions like its made of cornflakes, sounds like it’s made of cornflakes, and has the stability of cornflakes a ‘plenty but not a damn kneecap?

POTs, I really don’t want to fall today. And yes, I know you hate the heat and it’s June in the South. And frankly, you don’t give me the physical energy to move me somewhere cooler, so you see my conundrum. Also, I’d really appreciate NOT getting dehydrated now, as it makes everything 100x worse. Lord God, why am I always dehydrated, make it stop.

Sweet, hard-working Immune System, remember: Germs are not our friends. Stop fraternizing with the enemy. I know aren’t armed with much equipment, but try to fight, ok? I know Leukemia moved in. Stand your post. I believe in you.

Migraine, EDS, POTs…Ya’ll act like you’re toddlers at a petting zoo – cutting line in front of each other to get to get to something that’s loud, demanding, only mildly interesting, and shitty. Calm down. There’s plenty to go around.

Whoever is taking the meeting minutes, please note that the next person who sweetly tells me that the Lord never gives us more than we can handle is getting a throat-punch, and I am a very non-violent person. Ditto “God’s ways are not our ways,” and “Just pray harder.” Maybe two throat punches for praying harder.

I ain’t mad at God about this anyway. When he pours our souls into these Earth Suits, he never said they weren’t prone to disease and disaster. The warranty on the vessel leaves much to be desired, but we instead can rest knowing our Spirits are locked up tighter than a bull’s butthole in fly season. (Sorry for the joke, but laughter is going to be ESSENTIAL in getting through this!)

Seriously, guys. Ya’ll are going to have to take turns. Your presentation is sloppy and there is entirely too much overlap.

Thanks for attending this (mandatory) meeting. I know you’re all working so effing hard, just to keep going. To which I say, thank you. A harder working bunch there never was.

  • The Management

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Scary News and Big Hope – a New Journey Begins

Photo by Yelena Odintsova on Pexels.com

By: JANA GREENE

Hello, friends. I have decided to share my current situation, in the hopes it will help me to process what’s going on, and maybe give someone else hope who is struggling similarly.

I kind of hate that about myself – I want to be mysterious and private, I am just really bad at handling things alone, and there’s nothing worse than feeling like you’re in a sinkhole by yourself, (and nobody will even admit there IS a sinkhole, much less throw you a rope.)

So, I’m sharing this in the hope that you guys will lob some prayers and hope and good vibes my way. I could use it. I also hope by sharing this, maybe someone else facing a difficult diagnosis will feel less alone. I have decided to blog about my journey. Feel free to follow here at wordsbyjanagreene.com if you want to keep up.

Thursday, I saw an oncology hematologist at the Zimmer Center, because I’ve had whacky labs and a ridiculous WBC count for a while now. I have been feeling extra run-down. I already have a host of other major medical issues. Why was I being sent to an oncology specialist? Huh. I figured it was just a mix up. It was not. I was told to expect bad news, which was actually helpful to my mental health, even though was the longest weekend of my life.

Today I got the call that confirmed that I have Chronic Lymphocytic Leukemia. “CLL” is sometimes described as “the kind of leukemia you want, if you MUST have leukemia.” It is the only cancer that never goes away – there is no getting rid of it, it’s in my marrow. Many people live 10-20 years with it, sometimes without needing continual treatment. It is also extremely slow-growing and highly treatable. And I’m hanging my hat on that. But it’s still cancer. The next step is a bone marrow biopsy, and a PET scan to make sure it hasn’t spread. The doctor suspects it has not, and I hope he’s right.

On the one hand, I have answers. Mystery pop-up fevers all the time? Oh. Excessive bruising? Well, that makes sense. Mind-melting fatigue? Whelp. On the other hand, I have a long road ahead and I’m organically TIRED. Not just physically, but in every way.

I am pretty sure I have done all five grief stages in the past few days. Denial – poring over my labs determined to find some easy, benign explanation for all of it. And hitting a wall with obvious markers all weekend. Anger – WHAT THE ACTUAL F&%$? Bargaining – well, maybe not so much. At the end of the day, God is in control, and I am not, and I trust that he knows better than me. I feel his presence so intensely that I know the Spirit is buoying me up. I seem to be teetering between Depression (it’s a bummer any way you slice it,) and Acceptance currently. And the notes of acceptance are starting to be the dominant flavor.

I plan on letting my feelings have their say in all of this, even though it feels like my brain is being operated by untrained carnie workers right now.

The very hardest thing about this has been breaking the news to my three precious daughters yesterday. Literally the hardest thing I’ve ever done. I am so fortunate – they are all such incredible people and so supportive. And my husband is my ROCK. And I have such beautiful friends surrounding me.

Some people might think I’m the unluckiest woman in the world, what with so many health issues. But I see it differently – how lucky am I to be surrounded with so much love? So lucky. This is not going to steal my faith. Or my sense of humor. Or hope. It can’t. I won’t let it.

Blessed be, friends. I love you all.

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Keep Going Kiddo

Okay, it’s giving 4th grade
(but I’m a child of God, sooo…)

By: Jana Greene

I used to doodle a lot in church. Some would call it “prophetic art.” I’m of the mind that all art is prophetic, in that it releases energy. It releases dreams.

This week has been a most difficult week…maybe one of the most difficult ever. Bad news stacked on bad news. But still, deep inside, it is well with my soul. Not my body – and certainly not in my mind!

But my soul? A peace that I have NO business having – on paper. I can only thank God for making sure my spiritual sails were hoisted and my rudder steady. He saw it coming. And he made a way.

When peace like a river, attendeth my way.

But also when sorrows like sea billows roll.

This morning, I doodled again. I got the message loud and clear:

KEEP GOING, KIDDO.

Let the chips fall, but keep going. Accept bad news, but keep going. Cry, scream, and give God a WHAT-FOR. But keep going. You can walk forward while shaking your fist at the sky, I promise!

Maybe your inner kiddo needs reminding too. I’ll keep going if you will.

And thanks, Lord. Because whatever my lot, you have taught me to say, “It is well, it is well, with my soul.”

I hope it is well with yours, friend.

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Celebrations, Pity Parties, and a God who Attends Both

How often do I feel like I’m spiritually “getting things right”? About as often as we see an eclipse. So let’s not lean on on our “understanding” of God and lean instead into Love (which is really just another name God goes by.) And yes, this is my lame attempt at photographing the eclipse.

By: JANA GREENE

If it’s God’s will, it will come easily. That’s how you know you’re operating in the Spirit. Things will click. Things will flow. His yoke is light, etc and so on.

But also, if you are in God’s will, it will be hard.

You’ll know you have holy favor when you’re downtrodden and at the end of your rope. That’s the ol’ devil, don’t you know. And he wouldn’t mess with you if you weren’t doing God’s work.

Well, which is it? Do you see the conundrum?

This is life, and it’s both and neither. It is, so far as I can tell, it’s ALLTHETHINGS, dammit.

I can’t trust a God whose mind I have to pick apart to get it “right.”

I don’t tell my adult children, “Okay, I’m feeling some type of way about you…but WHICH way? Let’s see if you can correctly guess based on interpretation of an ancient text and my jealous, vengeful nature. May the odds be ever in your favor!”

I learn alongside my children, you see. For everything I learn about them, they learn about me. And in the process, and I feel like we are all learning alongside God, with curiosity and wonder and grieving and suffering.

It will be easy, there will be times of flow.

It will be brutally difficult.

It’s all holy favor, you see, and that’s the confounding part.

God only feels ONE type of way about you.

We need not wring our hands in an attempt to earn love, because that’s the way we have been taught to please a world of broken people and an unpleasable diety.

In actuality, the odds are always, always in your favor, Beloved. Even (especially?) when you’re most hurt, downtrodden, and at the end of your rope.

Whether you invite God to a celebration of the soul or an old-fashioned pity party, just invite him. The Spirit shows up for both.

How to be in the will of God? Just be.

Blessings, friends.

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Room Enough for Love

Ahhhh, you have to admit this is HEAVENLY!

By: JANA GREENE

When I thought I understood the hereafter in my evangelical days, I used to talk about the mansions we will all have in heaven, and looked forward to laying down this mortal burden and enjoying my “just reward” after fighting the good fight.

“Mansions!” all us Christians would insist. “We are all gonna have MANSIONS!”

In seems a strange form of idolatry now in hindsight. Entitlement, even. After all, it’s our birthright! In the end, it’s ego wanting what ego feels justified in wanting.

The way we all carried on about the specs for our abode in Heaven, missing the point and slipping into a prosperity gospel mindset.

So, God? You can give my heavenly “mansion” to someone else who struggled with homelessness while Earthside. Transfer the deed, and let it be so. Basking in the undiluted consciousness of the Universe is enough for me.

Perhaps God, you can see fit to let my address be YOU. Peace, not riches, in communion with the holiness we only get to see glimpses of here.

Although I surely won’t mind if you place me near water – perhaps a sea or a stream. I want to be cozy forever and ever, amen – safe finally and well. Whole and free in my little heavenly abode.

And I will invite all of my friends to my little UN-mansion; and that will be enough. A true just reward, eternally.

In my Father’s house, there are said to be many rooms, but I just need room enough for love.

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Taking Custody of the Inner Child

I know life isn’t like a Haribo commercial gummy bear commercial, where we all sit around the board table and infantilize ourselves in a quest to satisfy an inner child. But dang. Maybe we should. We should at least talk kindly to ourselves! Namaste, friend. The child in me recognizes the child in you. ❤

By: JANA GREENE

I spend time with a little girl every day.

Even the days I am very busy.

Even on the days she is a bit of a pest.

She is enthusiastic, sometimes whiny,

always craving affection and being a little clingy.

She is healing from trauma, you see.

Sometimes I don’t even know what to do with her.

I acknowledged her from time to time, sure.

But I ignored her whenever possible.

But she was mostly a nuisance,

and I used to not know what to say to her.

You see,

for the longest time,

I didn’t have custody of her at all,

which is crazy because she’s ME.

Of course I had physical custody,

but the goal was just to make sure she didn’t hurt herself,

didn’t starve,

wasn’t cold or hungry.

But mental, emotional, and spiritual custody?

She was on her own.

Now we are pals I’m happy to say.

I’m not saying she doesn’t get on my last nerve,

but she’s learning that she doesn’t have to be small,

and take up the least amount of space,

all of the time.

She is seen, and she is heard, and she is loved.

I used to bristle at the term “inner child.”

because I thought mine was gone.

I thought I was too late.

That’s the lie we believe –

that we are damaged right out of the gate,

never to be whole again.

To that I say BALDERDASH!

Please know that you can reparent yourself.

You can make your inner child feel safe.

You can make sure she feels seen and heard.

You can rediscover all the things she loved

but never got to share with you.

I love my inner little squirt now.

Get to know yours; I know she’s ready

for her turn.

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That Grounding Gospel – Taking God to the Mat

Photo by Pixabay on Pexels.com

By: JANA GREENE

I do my best spiritual work from on the ground, apparently.

I can remember laying on my mat Kindergarten at naptimes at school, a skinny little girl laying curled in a ball, watching all my classmates fall asleep like falling asleep is just a normal thing people do or something.

From birth, my brain never shut up, and my home life was dysfunctional to the point of chaos. So, I would lay with my budding anxious neurosis on the vinal mat, unable to sleep; afraid to close my eyes (and afraid not to.) No sleep, only unease.

My teacher, Mrs. Carter would stand over me and holler in front of the whole class, “CLOSE YOUR EYES, JANA!” I can remember squeezing them together and doing a rudimentary version of praying. It was a crude and simple exchange with the God of my Vacation Bible School stories. Even as a child, I seemed to know instinctively that there is more help available from the Divine than we ask for or expect.

“I can’t calm my mind,” I would have said to the adults in my life, had I the language to ask for what I needed. But I didn’t. Little girls with big, grown-up worries don’t know how to self-soothe, because OF COURSE they don’t; and they surely don’t know how to articulate anxiety or ask for help calming their minds.

That’s where I remember doing my first earnest prayers – on the kindergarten mat – asking of Jesus who already lives in my heart to be seen and soothed, comforted and feel less alone.

Twenty-seven years later, I found myself on the bathroom floor of my house, battling an alcohol addiction, wishing to die. On January 3, 2001, I came to the end of myself on that floor. Wretching, sick, alone, and desperate. From flat on the tiled floor, my fist in the air, eyes tinged in red, and skin yellowing, yelling at God and no one in particular, I came to the end of myself.

It reminded me of the biblical story of Jacob “going to the mat” with God in an all-night WrestleMania event. “I’m not going to take this laying down!” Jacob was thinking. But he ended up exhausted and limping, which is how most of us end up in that mindset, if we are not careful.

I had prayed many, many times before for sobriety, but there was a different outcome on that day. A peace descended on me like a dove. In my sickness and desperation, I was met on the floor by a God undeterred from my anxiety. One minute at a time, and then one hour, then one day, week, month, year… that was 23 years ago. A lifetime ago.

“I CAN’T CALM MY MIND” I simply told him. And here’s the thing: I know the same Spirit who curled up with me on my kindergarten nap mat is the same Spirit who met me in the bathroom, me clinging to the toilet, him not at all afraid to get the hem of his garment dirty on my behalf.

I am now learning to meditate now, and it’s a challenge. My husband, who never seems to tire of my endless new “hobbies” took me to get a nice, double-padded yoga mat. I’ve been on quite the little awakening for several years now and am learning so much. I absolutely love incorporating the tools I’m learning into my faith life, which is not a conflict with the holiness of God at all, no matter what Debbie at the Pentecostal church says. (I plan to write at length about what I’m learning, if you’d like to journey with me.)

The first group meditation session I went to, I dutifully spread out my mat amongst the hippies and lovers and seekers at the group event, excited to learn this new coping mechanism. The atmosphere was thick with love and cleansing. Yet can you guess what the prevailing thought was upon getting situated?

I CAN’T CALM MY MIND.

“Okay,” I felt Spirit say, over the Native American flute music and swirling clouds of burning sage (that former evangelical ‘me’ would be scandalized by.) “I am in you and with you and around you.”

If you feel you are on the “floor” in some regard to your life, I just want to remind you that it’s a nice, stable surface from which to start. You are simply grounding, darlings. The floor is a very vulnerable place to be, but be vulnerable we must, if we are to grow. We glorify striving, when simply being is enough.

So just ‘be’ today, friends.

Just be, Groundlings. And don’t forget to breathe. And ask the Universe to make you ever more aware of his presence. If we increase our awareness of this supernatural experience, we begin to see God everywhere – in every ONE.

In you, too! Ready to see, soothe, and comfort you – meeting you on hallowed ground.

5

Cringey Vulnerability (a tale of betrayal)

Today’s writing prompt from The Writing Room Collective:

By: JANA GREENE

If you are going to trust with any degree of your tender, fleshy heart, you will get hurt. It isn’t a possibility. It isn’t a “might happen.” We all experience betrayal. Death has lost it’s eternal sting, but betrayal still really smarts.

Many years ago, a woman who was freshly out of rehab was being released into her natural habitat of Life on Life’s Terms. We had a mutual friend at the time, who asked me to reach out to her so I can hook her up with some meeting resources, and just generally be her friend. As a result of her past choices, she relied on others to get her around town – she lost her licence – and I was all too happy to be her recovery buddy and take her to meetings with me.

And become her friend, I did.

Not only did she confide in me, but I in her; and regularly. Looking back now, I cringe at the uber-vulnerability I felt comfortable engaging in with her. I wasn’t her sponsor, but I was her friend, and I have a propensity for letting it all hang out anyway.

She had close ties with people who used to be an intimate part of my life (ESTRANGED family, gee, that should have been a clue!) but I did a crazy thing, which is to trust her.

What I should have caught on to, but missed by a mile, was that her wildly elaborate and passionate stories about recovery were pockmarked with holes, hugs, and bullshit. My gut often doesn’t get consulted on these things, when it should be the FIRST consultation I make.

On our rides to meetings, she was super animated and would often even quote from my own blog to me. I would sometimes think, ‘okay…THAT was weird,’ but most of my friends – and certainly me – are weird. Some of the personal stories she told suspended belief!

Eventually, this friend needed witnesses who ‘knew’ her pretty well, and after taking her to meetings for damn near a year I felt confident about testifying on her behalf.  “You’ve worked so hard on your recovery,” I said. “I would be honored to help!”

The Oscar for Best Actress goes to ….

My “friend.”

After I was a character witness for her, I never saw or heard from her again. She fell off the face of the Earth. It’s hard for me to imagine that degree of deception.

Turns out, this woman had been drinking all along – Vodka apparently, so I didn’t smell it. ALL ALONG.

I kind of pride myself on this mission statement: I don’t have relationships with people I don’t trust. That assumes I know untrustworthy people and can tell when they are lying. I thought I had decent discernment. Maybe that pride needs to go the way of ALL pridefulness. In the sh*tter, where it belongs.

The question I keep posing to myself is thus – HOW could I be so stupid and gullible? I honest to God just didn’t see it. I really hurt my own feelings about it. Then I realize, there is no betrayal that can’t teach us a thing or two.

There’s no way to wrap up this post up all clean and tidy-like, because life is just so messy. I don’t think I’ll hear from her again; she got what she had befriended me for.

What I experienced ain’t terribly original.

Active addicts lie. It’s kind of what they do. They deceive, minimize, maximize, lie, cheat, steal, and all to protect their best friend – the drug of choice. I myself used to strategically hide BOXES of wine all over the house (although I’m not sure why, as those in my life at the time didn’t seem to mind if I drank myself to death.)

But once I got into a program, I learned to call myself out on these behaviors and stop lying to myself.  Because calling yourself out keeps you sober, frankly. “Rigorous honesty.”

Yeah, that old chestnut.

As with most things about recovery, I’ve learned tons about myself during this time. Had I to do it again, what would I change? Even if I knew she was using me and lying about her addiction?

I would still offer to take her to meetings with me. I would still give her a safe place to vent. I probably wouldn’t have shared as much of my personal life with her, and I surely wouldn’t have vouched for her. Like I said, it sometimes seems that no good deed goes unpunished.

Although the deception happened TO me, it is not ABOUT me. It’s not about me in the least. But it stings all the same –  I’m just being honest about how this whole debacle made me feel.

Still, God calls me to be grace-full, and I’m trying. He never called me to be a sucker, though.  I have forgiven this lady (although she never asked for it) after wasting precious hours and hours on trying to figure out what clues I missed.

But forgiving someone doesn’t mean you want to break bread with them. You can forgive, walk away, and be wiser for the trouble.

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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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Psst…Your Energy is Showing (and it’s Beautiful!)

I think I’ve leveled-up on my woo-woo-ness. And I’m okay with that!

By: JANA GREENE

The best compliment I have ever been paid upon meeting someone that I have only known on social media previously is: “Wow! You have beautiful energy.”

I actually cried the first time someone said this. How wonderful to notice first the essence of a person; not the packaging.
I can think of nothing better than receiving that “good word” (as I would say in my evangelical days.) It’s a big ‘ol NAMASTE – my soul recognizes yours. What could possibly be better?

And I am sure to comment on the energy of others too. Some people positively glow with it, so much so that their presence changes the entire trajectory of your day.

Energy isn’t the perfect lipstick or a flattering haircut. It doesn’t give a nod to trends, or consider an outward aesthetic.

It’s our very frequency, which the whole universe vibes with. People can actually “tune in” to yours and mine – it’s created to be shared. We are all just only energy anyway, might as well be good energy!

Wrinkles and fat come and go (mostly just come these days.) “Beauty” by conventional definition “fades.” Our mental health gets janky. Cellulite dimples our bodies. Hair grays. Boobs fall. Fupas happen. My physical health is falling apart due to chronic illness. But this little light of mine? It transcends this Earth Suit. Thank God for that.

Your frequency is like no other. We don’t need to be perfect; we just need to lean into the Oneness that we all belong to.
Blessed be, Dear Reader.

And namaste, you beautiful energy vessel, you. Thanks for sharing your frequency with the world.

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