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 issuehumanity 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.
Yesterday was a very, very good day. It had been exactly a month since my diagnosis of Chronic Lymphocytic Leukemia, and my husband and I met with my oncologist to get staged and get a prognosis, after a battery of tests.
I am stage ZERO! CLL begins with stage zero, unlike most other cancers. Unfortunately, that doesn’t mean I don’t have cancer – it just means that it’s in my marrow and blood but hasn’t spread anywhere else. My bone marrow biopsy confirmed that I definitely do have CLL, but the PET scan was clear!
My prognosis is good! We wait and watch now. I will go to the cancer center every three months forever to monitor my white cell blood count, lymphocytes, and web blood cells. But until my WBC doubles within a span of six months or I start to have lymph node problems, I am treatment free.
Will I need it someday? Most likely yes. CLL never entirely goes away. But I’m already on the one day at a time plan with my other chronic illnesses, I manage the POTs, Ehlers Danlos Syndrome, and about another half dozen chronic conditions.
Life is crazy, man. Yesterday morning I was praying for the diagnosis of CLL rather than ALL – chronic vs. acute. Chronic has to be managed, acute is trouble. Funny that a month and a day ago, I would never been so flippin’ happy that I have any kind of cancer. Now I’m praising God that it is not acute, or do I require any treatment right now.
I didn’t need another major health concern, but I feel like my training wheels are off in this regard. I already live illness every day. And whatever this brings, I intend to rise to the occasion. Probably while doing a lot of bitching now and then, and maybe some crying, and a whole other layer of frustration…
But I’m pretty scrappy.
Thank you for all of you who have been praying for me. It is truly the best case scenario. I love my medical team and I’m so grateful for them as well.
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.
Got through the PET scan yesterday. Thank you all for sweet thoughts and prayers. It went “fine,” whatever that is. Except for once I was strapped on the table, I started crying. Fat, rolling tears came, en masse. And I had nothing to disassociate with. I wanted to grab my phone, or a TV remote, or a book, or ANYTHING. But my arms were strapped down to my side, so there was nowhere for any of it to go, no way to stuff it. So, as I traveled inch-by-inch through a giant mechanical donut (not nearly as bad as an MRI – look at the positive! – tears just rolled down my face for 45 minutes.
I would have given my kingdom for a single meme. Alas, it was just me and God in that machine, and it became clear to me that I am really sick.
What a time to snap out of denial, eh? Until now, I’ve thought of all the tests as just a “maybe I have cancer. Or maybe they’re wrong!” Even though an oncologist told me I did. Even though the biopsy confirmed it. They just have to do all these tests to rule it out, I kept telling myself.
Except they do not do bone marrow biopsies and PET scans for the hell of it. So, in the PET scanner, radioisotope coursing through my body, I accepted it. I cried the whole damn time and just FELT it. I was literally a human burrito, wrapped tight and constrained. I was reminded that this is why I made such a great candidate for alcoholism. Numb the BADFEELS.
After my childhood trauma and the series of unfortunate events in my life that followed, I just didn’t want to feel for the longest time. That was 23 years ago though and I know better now.
My sobriety is secure, and I’m grateful for that. It is only secure for today, because that’s how this thing works no matter how much sober time you have. But I’ve found my rusty recovery “toolbox” recently and it turns out that the tools are still in pristine order; it’s just the container that’s a little corroded and aged (hey! Just like my body!) I am daily remembering to keep my tools in working order – reaching out to friends. Spending time in meditation and prayer. Strengthening my soul. Keeping my mind busy. Practicing extreme gratitude.
But damn, y’all. I was already sick. There were already days that it was too much, just too much. So maybe the next step is anger, I don’t know. I suspect there is overlap in the stages of grief.
Anyway, one more test down; next up is meeting with my oncologist about staging the cancer , giving a prognosis, and planning treatment. Chronic Lymphocytic Leukemia is forever – the only cancer that never truly leaves your body. But the best-case scenario would be that he takes a “wait and watch” approach. I will have to get labs every three months for the rest of my life; to monitor it, and take action when the sea of letters and numbers and markers and God-only-knows-what-else indicates treatment. But I am symptomatic, so it will not surprise me if I need chemo. That’s the crappy thing right now – that I have no idea.
So I’ll break out another tool, which is trust. Trust that the Universe has my best interest in mind, and that may not look like physical healing. I learned a long time ago that everything is indeed not healed in the name of Jesus – in this Realm. I would rather have a healed Spirit than a healed body, and for many years, “name it and claim it” damaged me far more than being sick. Casting “demons” out of sick people is incredibly damaging. As is “you are already healed in Jesus NAME!” Really? Because I am still physically hurting. Stop it. Just stop telling people that it’s their lack of faith that is keeping them from getting healed; all it does is create spiritual orphans out of people who are already suffering. I’ll get my healing. Eventually, but maybe not here. And that’s not lack of faith. Child, if I lacked FAITH, I wouldn’t have bothered to stick around this janky planet, in this janky body.
I’m real sorry my chronic, debilitating illness makes your faith messy. People get well. They also stay sick. And sometimes they leave us. And I’m pretty sure Jesus understands that. Don’t insult my faith. I have been through more and trials infirmary in my life than you can shake a crucifix at. God and I are well, thank you.
I digress though. What was I talking about? Oh yeah, letting the emotions flow. Because they aren’t going away on their own either; feelings are meant to be felt! Even the yucky ones.
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.
Three weeks ago, I received my diagnosis of chronic lymphocytic leukemia. It’s been a weird time, to say the least. I still can’t believe I am typing the word cancer as relates to myself, because I’ve often thought, gee….I have a lot of medical problems but at least it’s not cancer!
And life – for the thousandth time – said THAT’S WHAT YOU THINK!
A few surprising things are resulting from my utter shock. For the first week, I don’t think I used the “C” word (no not that one, don’t be gross.) I called it “the illness.” Sick.” But I am finding that calling it out by name – cancer – takes just the tiniest, miniscule crumb of scariness out of it, even though I’ve seen what it can do and have respect for the illness. Acknowledging the name of the thing you’re fighting helps the fight-iness, I think. I am not apt to tolerate elephants in living rooms anymore, but face it and comfort it, if need be. But see it…really see it.
A dear friend of mine told me yesterday to stop calling it “my” cancer. “It’s OUR cancer,” she said, which made my eyes well up. I don’t want to bring my friends and family infirmary and sadness. I want to bring them joy and laughter. Alas, like everything else in life, it’s not “or” but “and.” It isn’t joy OR sadness. It is both, and there is nothing I can do about that.
So even though this is completely out of my control – as are all of my conditions – I’m trying to temper the rushing guilt of bringing everyone down that comes in waves. Our sweet tribe – our closest of friends – lost someone to cancer, only seven short months ago. We are family, in all the most genuine of ways. We are all still reeling and broken, trying to figure out how to live in a world she no longer inhabits physically. (Notice I said “physically.” I feel her spirit every single day, and I know she comforts and encourages me now.) Hers was “our” cancer too. Because none of us live in a vacuum, nor would we want to. It was an honor for her to let us walk her home. I hope I am half as brave, ballsy, and beautiful as she, in coping with this journey.
Perhaps this is not a wilderness experience. Maybe it’s not survival-“Naked and Afraid”-style – when one person has tapped out, and the lone contestant braves the wild. Truthfully, there are traumatized parts of me – parts left of the little girl in me left to fend for herself when I was helpless – that is fighting the urge to run. Run where, I do not know. I’m not a runner. But if I disappeared into the ethers, just *POOF!* it would not make anything easier for the people who love me. It’s a dumb thought born of “flee, fight, fawn,” which I very much needed to hone as a child but does not serve me now.
But I surely do feel Naked and Afraid – raw, vulnerable, exposed, frightened. All of it tinged with guilt about dragging other contestants into a jungle they didn’t even sign up to brave.
If you’ve ever watched the Discovery Channel show, the participants are supposed to be given ONE item to help us survive. A machete. A tin cup. A fishing hook. SOMETHING.
WHERE IS OUR ONE ITEM, FOR CRIPE’S SAKE??
And then it comes to me – we are equipped. With just one survival item – it’s all we get.
Love.
See, the undamaged parts of me have a knowing – we are given one item, and only one that matters. It’s not a weapon. It cannot be stolen, used against us, or bartered.
Love keeps me from tapping out. Love keeps me from running. And love will be the key to my survival – to OUR survival. It’s all we take with us. It’s all we are born with and die with. It is everything.
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.
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?
A conversation between Fundamentalist Me and New Me:
FUNDIE ME: “Lord, if I ever stray from your will, please just take me home before I disappoint you.”
NEW ME: “Wow. That’s a little dramatic. You are asking God to let you die if you ever start asking questions of a spiritual nature? Isn’t that basically crossing all the “t”s and “i”s, so in case you ever DO stray you can get God on a technicality?”
“No. He’s a good, good father. I will walk each day by faith each day. Because Oh! how he loves me so...”
“He is. And he does love you so. But that prayer is literally the definition of ‘living by the letter of the law. I remember how much you love music. You’ll appreciate it even more in the future. Did you know, all music is worship, by virtue of being a creation of the Universe? Led Zepplin, Indigo Girls….”
“Deceived. Let’s change the subject. This country is going down the tubes! Jesus must be ready to return! Turn before you burn!”
“But ‘it is finished,’ I thought. “To me, that means that it’s a finished work.”
“Speaking of work, this nation was built on…”
“Yeah, in the future, you don’t support blind nationalism.”
“I know that’s not true, because God would have taken me home already if I stopped supporting the nationalist movement. I love my country!”
“Sweet girl, it won’t be the same country by the time you get here, trust me. Better in some ways and so much worse in others. You will care about social justice…”
“Gosh dang! NO.”
“And the death-wish-before-doubt prayer that God will take you right off this earth before he’d let you become liberal….er, um, I mean unholy fallen daughter of the Highest King. You’ll see how whack that is.”
“We are all born unholy. Did you just say ‘whack?’”
“We are all already holy. We are all redeemed. We are all saved. All means all.”
“WELL, I NEVER!”
“Actually, you do. You will ‘never.’ And your heart will be full, because you have no other motive than love. You’ll go to Pride rallies and pass out Free Mom Hugs…”
“No. There’s no way. You can love them without approving of their lifestyles.”
“… And the people there will sometimes dissolve into your arms and sob, because their own parents reject them just on the basis of their sexuality.”
“Well, they shouldn’t. BUT you’re playing fast and loose with ‘grace’ to ‘condone’ all that.”
“What’s to condone? As turns out, that’s not what loving unconditionally is supposed to look like; having ‘buts‘.”
“I mean, love the sinner, hate the sin. You keep saying ‘love.’ Love is discipline. So that’s not what God meant.”
“Isn’t it? Once I filtered the BS out that I feel like Jesus wouldn’t approve of, it made things so clear.”
“Did you just say ‘BS’?”
“Yes. And I say a lot of other potty words too. After repressed for so long. I now know that cussing is not what God meant about keeping our language and hearts pure. He meant don’t use your words – even scripture – as a weapon towards others. Using language for cruelty, exclusion…”
“You don’t say the ‘F word,’ Lord, please say ‘no.”
“Oh yes, you’re quite fond of that word. And the funny thing is, so are many of your ex-evangelical girlfriends who never swore because a Proverbs 31 woman wouldn’t say naughty words, and that was the standard for the godly faith of a woman.”
*Plugs ears* “LALALALALA…”
“Oh, you will learn that Eastern religions have a lot of truth. You’ll do yoga on occasion, and…”
“NOT YOGA!”
“Listen. It’s perfectly effin’ okay.”
“You went and said the ‘F’ word.”
“Yes ma’am.”
“God corrects…”
“Then let God correct, as he is far more persuasive and compassionate than we could ever be. Just love one another. He wasn’t just whistling Dixie when he said, ‘love is the greatest of these.”
“It can’t be that simple. You cannot go around willy-nilly approving of people the way they ARE, when they should…’
“Yeah, you’ll learn not to ‘should’ all over other people. And it IS that simple.”
“Well, that’s not ‘love.’ The BIBLE CLEARLY SAYS -“
“Yeah, about that…once you study Christ without 2,000 years of human dogma considered, you’ll learn the Bible ain’t too clear, period.”
“Lord, why am I still living? Oh the humanity!”
“Calm down, you’re going to love God more than ever when all is said and done. Not the concept of God you grew up with, though.”
“Well, I KNOW God, and…”
“You know the absent or spiteful god. God is incredible. So let him out of the box, sister girlfriend.”
“That’s scary. That’s gotta be the devil talking.”
“Yeah, that’s a whole other subject for another time. In the future, Fundie Jana, I’m going to love you, too. Because you strived so hard for a God to accept you, when your very existence proves that acceptance.”
“That’s New-Agey. Please repent. Before it’s too late.”
“I’m extending grace to you. The grace that you have deserved all along, but never claimed.”
“That’s prideful. We don’t ‘deserve’ anything.”
“And you’ll see the bigger picture and realize every single belief you practiced was necessary for you to be free in the end. And you will be free.”
“That doesn’t sound right.” *Wrings hands*
“You’re so afraid just to be. Please believe God is not trying to get you on a technicality.”
“But the ‘human heart is deceitful….”
“God wouldn’t have place a curious mind if you weren’t allowed to doubt and delve.”
“I’m so worried I’m going to lose the love of God if I open my mind.”
“Yes, that’s what kept you sick and stuck for a long time.Reconstructed You will be safe. You will be strong. It is truly for freedom that you have been set free.I love you just the way you are.”
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.
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.
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’ve written most of my life about wandering in the desert, because frankly – I knew the desert like the back of my hand. Desert journeys include a lot of traipsing over the same sands you’ve already navigated, because the terrain is indistinguishable, and a lot of anxiety is generated by wondering when the bare, solitary wasteland finally opens up into the green meadow.
“Wandering the desert” is a catch-all term for feeling lost and bereft, without benefit of a plan, and without benefit of a Guide. On your own, finding your way without a map. Knowing somebody somewhere knows how to get out but is watching you bungle it. It’s the Christianese way to validate the spiritual experience of feeling lost and alone.
Every day, more wandering than wonderful. Wander and bump into something in my way. Wander and collapse from exhaustion. Wander and bump into myself (which can be a real awkward encounter, if you’re not ready for it.
Everyone acts like the desert is a life stage you have to go through to get to the other side. But many of us been wandering in a desert, keeping our eye on the sands, only to watch it disappear like a mirage the closer we get. Suffering here is buoyed by the hope that in the sweet by-and-by, we will be magically lifted when God returns to scoop up all of his chosen people, heretics and hooligans literally be damned. Except for I want my magic now, and I rather like the heretics and hooligans (and suspect Jesus does too, given his propensity for hanging out with scoundrels.)
What they won’t tell you is that it’s an inside job – that the Guide came preinstalled in you, and you cannot uninstall it. Trust me, I’ve tried, in times I was sure I knew a better way.
The “magic” of a God who cannot be anything BUT mystical and That’s where the magic happens. Paradise in the midst of a desert. You don’t have to go far to hear the Spirit of Source – go within. Not all who wander are lost, after all.
No bare, solitary, spiritual wasteland for you. Source loves you too much to keep you in that parched wasteland.
If we are eternal creatures having a physical experience for an allotment of years on Earth, it begs the question:
Why have a physical experience at all? Especially with all the heartbreak and tragedy raging all around us. What’s the value in being here?
No matter how crazy life gets, I truly believe there is purpose in our being Earth-side. And I recognize that having a human experience enables us to experience things others in the spiritual realm may not.
Take chocolate, for example. Do angels eat chocolate? We do. It’s delicious.
When they hear Led Zeppelin, so they feel the music in their physical bones? We can. (And it’s like climbing a stairway to Heaven!)
We have thunderstorms so rumbly, you feel the thunder in your chest.
Literal water falls from the sky, on the regular. That’s some legit Garden of Eden stuff there.
Water is one of my favorite parts of being human. How would we appreciate the Living Water that is our Creator, had we not known the concepts of thirst and satiation?
We can climb trees that have their own intelligence, and admire flowers that God didn’t need to make so pretty, but did.
We get to host the lives of other sentient beings – little furry forever friends. We get our faces kissed with slobber, and benefit from the vibrations of a purr, and although I know pets go to Heaven, I’m grateful for their pretense in this intense world.
We have telescopes to remind us how small we are, and microscopes to show us how intricately we are put together; for we are made of divine love, and stardust.
We have books – vast volumes of human history and human frivolity, ours for the ingesting.
And we have tacos, y’all. In all the universe, we get to enjoy tacos!
Best of all, we have one another. That’s really something – relationships. Just two Earthlings who took a shine to each other and become friends for life. What? That’s crazy! And I love it.
We have such grace and grief, both; double-edged swords that clear the rubbish of human drudgery to make room for the fruits of the Spirit.
If you are living under skin and over bone, you are on a quest. Get excited.
The world – even with its trials and tragedies – is one God so loves. It’s messy and painful and sometimes I’m not sure why he loves it. but I’m certain it’s loved because look around us.
May we find love, joy, patience, kindness, generosity, faithfulness, gentleness, and self control in our human experience.
Better yet, while we are questing, may we BE love, joy, patience, kindness, generosity, faithfulness, gentleness, and self control.
And May the angels and eternal beings on the other side cheer us on as we throw down the gauntlet, anxious with anticipation.
Photo by Jou00e3o Vu00edtor Heinrichs on Pexels.com
By: JANA GREENE
I believe we will all share a Christ-consciousness. I believe that we are all sharing communal birthing pains – periods of big intensity, followed by what could be misconstrued as God’s silence and withholding, if you didn’t know better.
We are all in spiritual labor, that’s why it’s so hard, I think.
I believe the same God who expands the universe and paints the cosmos envelops us in Love and one day – when we are past the bullshittery of politics, fighting amongst ourselves, dealing with pain in our Earth Suits and in our hearts – there is only goodness and mercy waiting for us.
For us ALL.
When the husk of physical being falls away, only universal love and acceptance remain. We can do nothing to enable it, and nothing to suppress it. It’s our birthright. It’s the ultimate reality.
So be encouraged, dear one. Lift your chin. Leave space in your expectations for good things.
Leave space in your ego to accept those good things humbly.
Surely goodness and mercy shall follow us all the days of our lives, spilling over and splashing other humans who are lost in the dark.
Here, take my hand, and we will get through this intensity together, one itty-bitty step at a time.
Let us strive to have a dry-run here and now. Let us learn how to love and accept here and now.
You can say I’m a dreamer, but I’m not the only one. ❤️
You’re the one who got me in this pickle. You started it.
You said to love your neighbor. But it turns out there seems to be disclaimers to this most important of all commandments, and it’s very confusing to keep the rules straight.
Then you told me to witness to the world, make disciples of men, when what they really need is a template for what love looks like; not just what it sounds like.
So, I did that too.
You told me to pray God would break my heart for what breaks his heart, and that is the prayer that did me in. I hope you’re happy.
This was the knottiest kink in the whole chain. Because listen...
HE DID IT. I had a supernatural experience. The veil didn’t tear open but it did have a loose thread. And I did what people do, which is to pick at it until it unraveled.
And it was VERY upending and not entirely pleasant.
People were hungry. People were lonely. People had had scripture lobbed at them at every turn but were empty. I did a lot of that lobbing in the day. They were all hurting, because we are all hurting. Presence does what words can never do.
The whole, wide hurting world is looking at Christ-followers to see if they are made of the same stuff they preach. And woefully, too much of it perpetuates the separation between us and God (in reality, there is none.)
And you never told me to love myself, as one who could also benefit from that top-tier commandment. And I didn’t know how, as you taught me the human heart is deceitful above all things and not to trust it. Not to trust the voice of the God particle we all carry, that divine spark.
Church, God is within you, you told me. But he’s not the icky parts. No, he cannot be in the presence if ick. It’s too icky and you’re too human. As if Christ didn’t pick his nose or wipe his butt. As if he didn’t wail and cry, and ask the cup to be taken from him.
It’s my desire to see the Church repent for making love about doctrine and law.
Please don’t discount revival because it looks nothing like you thought it would. God is crafty that way. He isn’t bound to do it your way (or mine.)
As it turns out, I don’t mind being in this pickle anymore. Because it’s fundamentally changed me to consider the suffering of others. It should change all of us.
I fell in love with you a long time ago, Church. There is so much to love. Good news! Community! You reared our whole generation, and I’m so grateful for all the wonderful experiences I’ve had in your space. It felt like a safe space for a long time.
But perhaps it’s time for a shift?
I will always love you, but sanctuaries should not be proving grounds.
And as we all experience this great winding-up to sharing the mind of God in total, let’s remember people over policies. Politics have no place in religion, and frankly, we cannot afford the hatred that comes part and parcel with politics. Please keep it out of the pulpit. You alienate more people than you help.
So, actually, thank you for starting this, I think.
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.
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.
Words by Jana Greene 