In the interest of transparency, today sucks a little. I share when I have good days and get gussied up – admittedly those are fewer and further apart. And I share when I’m struggling because I don’t want to pretend I have my shit together for social media. That benefits no one. I don’t. And I won’t. Life is messy (and also great and awful, in turn. So who can give up yet?) But today the fatigue is crushing me, literally feels like a smothering blanket I can’t get out from under. And my pain level is crazytown. People get tired of hearing about my pain, I’m certain. But I’m tired of feeling it. So I spent some time meditating. And some time worshipping. And crying. And that’s the truth. That’s me, pulling myself up by my bootstraps. Leukemia sucks. Ehlers Danlos sucks. I’m tired of physical weakness making me feel less strong as a whole person. It’s just a hell of a day.
Thor’s Helmet in Canis Major. This image captures NGC 2359, a nebula shaped like Thor’s helmet in the constellation Canis Major (the Greater Dog.) Behold the absolute majesty of such creation!
By: JANA GREENE
I have always loved space. I think maybe I was born the year of the moon landing, that event which eclipsed my birth but began my own personal Age of Aquarius. I am also from Houston, where NASA was cause celebre – a field trip destination when I was a child, a portal to the great unknown.
I am 55 now, much more jaded about the conditions here on this planet, and a little obsessed with the beauty of the unknown. And now BEHOLD! The James Webb Telescope is capturing all of the glory I felt was surely “out there.” It’s like a great confirmation that our every day is not just every day in the vast universe. And that is super comforting to me.
Because here we mostly just see what’s here now, and experienceable through a finite number of human senses. It’s easy to forget we are divine beings living in a mousetrap of sorts.
Our daily lives are driving to work and driving past long, rectangular shopping strip malls, each less remarkable than the last. We shop in grocery stores that shelve our sustenance; items stocked neatly in a row, affordable by only some of us, while others go hungry. Traffic lights telling us when we can move, stop signs telling us when to stop. Hospitals housing our infirm, and despondent. Skyscrapers places to while away the time in order to make this thing we have made our god called “money.”
We worship vacations, because they set us free from the mundane for a fleeting time. We marvel at theme parks, because they make us feel like we aren’t ants marching on a big, blue marble. They are fantasy, and we have made fantasy the be-all end-all, another god altogether – who will whisk us away from working, and strip-mall shopping, and boredom.
The two places that seem most like home to me are space and ocean. Something about the mystery of the unexplored, the hope of otherness. Two of my hyper fixations that shape my daydreams and my dream life. Every new image from the telescope making me swoon.
Can you imagine I mean seriously; can you imagine? The colors, thick with stars, speckled with other worlds. Worlds where maybe gravity isn’t such a drag, sucking us to the good Earth. It makes me starry-eyed, morphing me into a child again, who wishes to soar through the cosmos and escape this realm. Escape all of the violence that exists here, and the poverty that breaks my heart, and the man-made monuments we make to celebrate ourselves.
I’d like to astronaut myself right out of this earth suit of mine, with of its maladies and humanity, and soar through endlessness.
But Houston, we have a problem. My feet won’t seem to leave this plain. They are heavy with purpose here, even as my mind likes to travel “out there.” Out there where my mind will quiet, maybe. Out there where God himself decides the order, which celestial bodies to spin where, what galaxies should resemble earthly things. I think some majesty of the universe is that we recognize some of it in ourselves.
A compulsory Google search will show us the Helix Nebula, which appears like a giant eye in outer space. It is often referred to as “The Eye of God.” The “Butterfly Nebula,” captured in 2009 by the Hubble Telescope. The “Horsehead Nebula,” looking for all the world like the profile of a steed. The list is endless.
The ancient stargazers knew that the Universe ties itself to us, even without modern telecopy. It reflects our world so that we know we are a part of it.
Carl Sagan has famously said: “The cosmos is within us. We are made of star stuff. We are a way for the universe to know itself.” A way for the Universe to know itself.
We are literally made of stardust – from the elements God used to create everything. Our good earth in its natural, perfect state. And the great mystery of miracles we call the “sky.” There is so much more glory.
Look up from your day job. Look up from your pain. See that there is so much more! And I will try to keep looking up, too. To quote Carl Sagan again, “Some part of our being knows this (space) is where we came from. We long to return. And we can, because the cosmos is also within us.”
Star stuff, mind you. Made for bigger things, better things. Don’t give up hope that God can fix this world through us, through a much bigger reality. I will hold that hope too, as I obsess over the Great Beyond that we call “outer space.” And be reminded we – all of us, and the whole Universe too – are connected.
Because sometimes our Current Selves and our Best Selves need a little pow-wow
By: JANA GREENE
BEST SELF: GOOD MORNING! It’s a beautiful day full of promise and potential miracles!”
CURRENT SELF: *HISSES IN UPPERCASE.*
BS: Gently rise from your slumber by birdsong! Thank the birds, as their melodies are the first track on the playlist that will be this day.
CS: I rise by cat, three hours before sunrise, by furry little entitled overlords, yelling “MRROOOOOOOWWWW,” and triggering me to greet the day with “Oh my GOD, not this sh*t again.”
BS: *Facepalm* That’s a little dramatic. Let’s continue.” Be sure to do that little stompy-windmill dance to ascertain which joints need bracing for the day, and then brace your knees and thumb so they don’t go completely sideways, speaking kindess to your body.
CS: We both know sh*t gonna go sideways anyway.
BS: *clears throat*: Okay, back to gratitude. Raise you hands Heavenward, lifts eyes to God, in awe of his majesty, and in preparation to receive the still, small voice of Spirit. *OHMMMM
CS: *Raises hands Heavenward* and promptly subluxes right shoulder joint, followed by the sound of 12 boxes of Rice Crispies being poured into the milk of God’s breakfast bowl as I do the stompy-windmill dance. My sacred and earnest prayer is actually” Snap! Crackle! Pop! Please make this sh*t stop!” (Hey, who’s to say I’m not making a joyful noise unto the Lord with my body, if only providing the percussion?)
BS: How about I steep us some healthy green tea? Full of antioxidants! *Opens cabinet and unopened boxes of green tea in every conceivable variety buries Best Self. * And in a muffled voice: Do it for your body, it is fighting cancer, Ehlers Danlos, POTs, and a bunch of other chronic and painful conditions. If anyone needs antioxidants, it’s us!
CS: Well, you see, for spiritual reasons, I’m brewing a cup of coffee like God intended – with sugar and half-and-half. It tastes like hopes and dreams, and not like God is withholding love from me, which – let’s face it – is what I can only assume with every sip of green tea.
BS: *Sigh* Time for Daily Affirmations! Go stand in front of the mirror and repeat after me: “I am strong!” “I am resilient!” “All will be well!” “I will handle my pain today like an enlightened Zen-Master, and not like a man with a common head cold or the flu.”
CS: Um, I’m kind of feeling ‘man with a common head cold or flu’ vibe today. Woke up feeling sick. How about some “Sh*tfire, this HURTS!” punctuated by “Oh well, make the best of it!” Followed by some primal screaming (what’s the matter CATS? I can scream TOO!) that leads into “I AM A STRONG WARRIOR! “
BS: Well, it’s a little dramatic but….
CS: I’m not done. Concluded by saying all seven of George Carlin’s 7 Dirty Words as my hip rolls out of place, before this prayer: “Thanks for the grace, God. I really need it.”
BS: Um, ending affirmations on a positive – that’s the ticket! Kinda. Wanna hang out tomorrow? We could do all of this together – you and me. Our Best Self and our Current Self don’t have to be at odds, imagine if we joined forces! I’ll allow you the occasional pity party, and you allow me to help you manifest hope, healing, and general badassery?
CS: Can I have an exoskeleton? I saw them on Amazon. They support every joint in the body, plus also makes you look like Optimus Prime. Makes you a bona fide superhero – the kind who leaps tall buildings in a single bound.
BS: Can we settle for some Tiger Balm, braces from CVS, and mobility aid? It’s from Amazon too, just like that exoskeleton.
CS: what.
BS: You could be the kind of superhero who can open jars without dislocating her thumb, put compression socks on by herself, step over a cat without tripping, do laundry without being too tired to complete it, and sometimes have enough energy to join friends for lunch?
CS: I suppose that’ll have to do. Hey, I think maybe we can be friends.
BEST SELF: We can, if you let us. I have such wonderful things to teach you, so that you can enjoy this beautiful, messy, challenging life.
CS: What the hell! I’m IN. Can I at least wear a cape?
I had horrible night sweats last night. Nothing like waking up pained and feeling like you wet the whole bed (I did not, just sweat.) So, I woke up to change my PJs and my sheets and couldn’t manage to go back to sleep. That was the 2-4 a.m. hustle, even before the sun was up.
It reminded me of getting up with my babies when they were little. I would change their diapers and onesies and change their sheets if they had leaked a little. I would calm them with kind, soft words, and cradle them to my breasts for a little feeding. Whatever discomfort they had was soothed. Whatever tiny human need they had was met. Thirst, hunger, general fussiness – all of it within my ability to “fix.”
Then I remember endless nights when they had colic, and I was sleep-deprived and unable to make them feel better instantly. And on those nights, walking the floor, jiggling a fussy baby, I sometimes cried too, right along with them. Little did I know I would cry right along with them all their lives, when colic was replaced by the struggles of growing up.
I didn’t consider that they would develop needs I was helpless to aid in the future, and I certainly didn’t think about my own needs; the ones I would also be unable to manage. I just lived right there in the moment. I’ve been trying to get back to that mindset ever since.
It makes me want to cry now that I cannot soothe myself on mornings like this. I can’t fix leukemia.
I can change my sheets and tell myself kind, soft words, and cradle myself in a hug, even as I am drenched with sweat. I cannot seem to get enough rest, even though I may still have ten or twenty years – CLL is “the leukemia you want to have, if you have to have leukemia.”
But here’s the thing…I do not want to have it at all, please and thank you. It’s kind of the shitty icing on a shitty cake, as I was already battling a myriad of chronic conditions. I cannot imagine what things will be like as this thing progresses over the years. Ten to twenty years of endless night sweats and crippling fatigue? Gee. Thanks, I guess? I’m such a grateful person, in general. So, this journey has got me in all of my feels. Can gratitude and frustration exist at the same time? Lord yes, friend.
In the meantime, I will try to keep my PJs dry and my attitude from tanking, because on days like this, I just want to fahgettaboutit. But I cannot just fahgettaboutit, because I have people who love me, dammit. They still depend on me for less sophomoric troubles. And I have such a wonderful circle of support; people who soothe me like a colicky baby when I want to give up. They know they can’t “fix” it, and I appreciate their trying anyway.
I know this piece would leave one to believe I’m a bitcher and a moaner. But see, I’m also a fighter, even as I cannot feel rested, and I’m flummoxed by the unknown. So, like a one-year-old learning to walk, I put one unsteady foot in front of the other, garnering self-praise when I teeter without falling, and crying when I do fall.
And in this 2-4 a.m. hustle, I will soothe myself and accept the soothing from others, and hopefully grow in the interim, just like a child, y’all. Because just like our children did under our watch, we are all still growing up. And we all live right in the moment, whether we like it or not.
Right this image at the Britt Floyd concert last year.
By: JANA GREENE
If we were tight once, but life and traumas and the life stages, and circumstances that mucked with our strong friendship….I’m sorry. I’m sorry I let us drift apart. Please drift back to me when you need someone to listen.
Or maybe we “outgrew” one another, or had distance put between us – geographically and emotionally, physically.
If I loved you once, I love you still. No matter how we drifted apart or parted ways, You need to know I am always rooting for you, and always will! Nothing would make me happier than to see every last friend succeed and live her best life.
No matter what happened between us. I’m cheering you on. And even when some relationships didn’t end on the best note, Please forgive me for my part in whatever hurt you. I am handing you a (cyber) olive branch.
Exceedingly grateful for so many incredible friends. You inspire me! Love you.
We are all just walking one another home, at the end of the day. ❤️
Get offended by poverty. Get offended by kids who cannot afford school lunch. Get offended by sick people who cannot afford medical care. I highly recommend following The New Evangelicals.
By: JANA GREENE
I am embarrassed for Christians, and I AM one. My precious faith has been hijacked by extremists and I am none too happy. Between the Trumpers and this nonsense, it’s barely recognizable as adherents who feed the poor, help the helpless, and minister GOOD NEWS for ALL. Stop it. Please just stop it. Please study up on cultures that are NOT your own.
The Olympics did not originate under Christianity. Every single thing on the planet is not based in Christianity. I can’t believe I have to say this, but every single thing from another culture is not demonic and against your beliefs. Stop with the persecution complex already, holy cow (cows are sacred in India, but it’s just an expression, not a jab at your faith. See how easy it is to not “holy-ize” everything?)
The Olympics is an event that began in Ancient Greece. The Greeks had their own mythology, which is what is portrayed in celebration of the games, which also originated in Greece. What you see as a drag show, the ancient Greeks saw as theater. What you see as… you know what? Nevermind. Closed minds don’t hear a thing. And that makes me sad for us all.
Listen, friends. I feel passionately too. But I am writing this as a simple observer, stepping back and noticing what is happening. And what’s happening is so ugly. Blessed be, and remember that you are a light worker in a dark world. Open doors for people, compliment a stranger, be sloppy generous with the love you put out in the universe, and I will too. And hopefully we can make a difference as we flounder through this dystopian nightmare. Amen?
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.
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.
I struggled with whether or not to write this, but watched the Amazon Prime documentary, “Bad Faith” yesterday, and felt compelled to further the message by paraphrasing what of the social justice activists said: “The Christian Nationalists have a ‘Jesus,’ but it’s not MY Jesus!” And man, that resonated. I feel like my very best friend – Jesus – is being widely misrepresented, and it would be remiss of me not to defend his honor.
And I am also writing this because I can’t ignore the emperor’s-new-clothes mentality that has made his whole cult of personality, so that now he is some kind of “martyr.” I guess if you don’t believe that having someone shoot at you instantly gives you character and integrity, you are a part of the resistance? I wish no ill will or harm on anyone. But this seems to be the determining factor that made holdouts say, “The Lord made sure the bullet didn’t hit him! He MUST be the one!”
Resistance? So be it, then.
Jesus resisted institutions that persecuted the poor and marginalized. He resisted against the establishment who elevated the pious and religious, over the meek and humble. He was the resistance against self-righteous hypocrites who represented God with a cocky assuredness that theirs was the only way to please him. And he IS the Way. The Way himself was the Resistance.
We – as evangelicals – cut our teeth on scripture that gave us clear instructions: You will be able to tell followers of Jesus by the fruits of the Spirit. Show me one attribute of Trump’s – gentleness, kindness, peace-spreading, humbleness…go ahead, I’ll wait – that he has – even a low-hanging “fruit.” Jesus was laying down arms. Jesus was personal sacrifice. Feeding the poor. Providing aid to the sick. Jesus was humility. Jesus was Jesus-like. That’s kind of his whole bag.
But here we are – being asked to worship at the Golden Trump Calf, with nary a shriveled grape of the ONE THING we were told to expect as evidence that someone follows Jesus: LOVE. And it’s too bad for us, because he doesn’t display a single dingleberry. Anything at all.
Going back decades, this ex-POTUS’s MO had been screwing around on ALL his wives, cheating people, worshipping himself, making a god of money, looking down on religious folk as “weak,” stiffing the poor, grabbing women by the p*ssy (does reading that word in this context make you uncomfortable? It should.)
Now he slaps his name on the Bible and hints at encouraging domestic bloodshed, and we are all supposed to pretend like that’s holiness.
“But don’t you believe in forgiveness? Maybe he’s a changed man!” Okay. Again, I say, show me one single dingleberry of evidence that he operates from a pace of love now. He is USING CHRISTIANITY to further his agenda, and frankly, he is a shitty actor, and I feel like we are all living in a particularly terrifying episode of Black Mirror.
We are a nation blinded. And nothing and nobody will change the minds of those for whom cognitive dissonance is the accepted mindset. Open your ears, all that can hear. Open your eyes, all that can see. The Beast always comes in a savior suit. It’s a most clever disguise, but beloveds, we are supposed to know better. We are supposed to have graduated from “milk” to “meat,” spiritually. To be on the lookout for wolves in sheep’s clothing. We are supposed to have discernment – we were warned to expect this.
This IS the battle between good and evil, alright. Koo-koo bonkers on a whole other level. I want to be on the right side of history, and every cell in my sentient being heart is sickened by all of this.
Take heart, for Jesus has overcome this world. Good thing too. It’s WHACK here right now.
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.
I was alerted by the WordPress Bots that I have blogged 50 piecesnow on “Words by Jana Greene.”
I started this blog and retired my first, because I have different things to say now, and I’m not writing just for Christians. At all. I am writing for people who maybe don’t know what they believe, but they believe in the search for it with all their heart, and appreciate a kindred spirit. (Christians are of course welcome too; I count myself amongst you.)
I wanted to write in a way that was cleansing, raw, and maybe a smidge inspirational. And I think I’ve accomplished that. I hope so, anyway.
Fifty bearings of the soul.
Fifty chances to be vulnerable, in case someone else is feeling vulnerable too.
Fifty articles by the same old person?
Or am I the same old person?
I have a dear friend who likes to say that instead of having one inner child, we all have a whole preschool in us. And we do. I am finding myself to be a whole class full of university students.
Or, since I never went to college, maybe just a whole demographic of sensitive souls. Some that laugh at inappropriate things, like a 12 year old boy. Some who feel wise as a sage. Some that whine and fight naps like a preschooler. Some who manifest peace that passes understanding, like a monk. And some that scream WTF???!! into the abyss, like….well me.
Every last one of them, emotional.
All of them passionate. (Some of them need to chill already!)
Every day, we learn something different, hoping to end up a better person in some small way.
And most days, I come here to free-bleed words into the internet abyss, or celebrate some small victory, or rejoice, or complain. Sometimes all of those in one day!
What I’m trying to say in way too many words (as usual) is – I appreciate that someone out there is reading my work, and hopefully not looking at it like a stain on the carpet. I do enough of that to myself.
Hopefully, every day we are gaining some measure of connection or hop Ee, and if I can be a part of that, mission accomplished. Everything arrives right on time, and it’s my honor to share it with you, fellow human.
Thanks for taking the time to read me. I am grateful for every single way God manages to connect us, even as we are being divided (and subdivided) by society. Let us press into one another, with the Truth – which is that we are all connected.
While I’m bleeding words, I may as well hemorrhage some gratitude too. ❤
I have been triggered by so many scary things lately, pending my prognosis for CLL.
If we can be “triggered” by things that make us anxious, surely, we can choose to focus on the “glimmers” instead. It sure does seem that feeling triggered is a natural response to stress – it’s automatic, at least for me. It’s my subconscious mind’s default when facing the unknown.
I can amass worries, panic, and thoughts of doom like a pile of dirty laundry that takes up a whole corner of the room, without me realizing I don’t have anything clean to “wear.” I don’t want to wear despair, but as an uber-feely person, I do.
Or, I can focus on the glimmers, instead of “researching” CLL into the ground, (which will not change an outcome either way.) Here’s to counterbalancing with some GLIMMERS:
I love my medical team and trust them.
I have an excellent therapist.
I do not feel abandoned by God, but instead warmly comforted by him (to my own surprise.)
I have the strong support of my husband, children, dad, and sister. And a circle of friends so tight, they have become family in every way. I’m so grateful for my tribe.
Every medical professional I meet – even in passing – has been kind.
Many people live 10-20 years with my condition.
I have insurance, which is a monumental blessing (but OH how it breaks my heart that not everyone has access to medical care! Alas, that’s a whole blog post in itself, for another day!)
But I have to think on these things ON PURPOSE, or fear takes completely over.
The nurse who administered the radioactive isotope for the PET scan was prepping me for yet another IV this past week. I thanked him
“I’m not sure you should be thanking me,” he said, with a chuckle. “I’m fixing to poke you, make you radioactive, and put you through a machine.”
“Yes,” I said. “But you are kinder than you have to be. And not many people are anymore. You explained everything, you are being gentle with my arm and my feelings. You are being a ‘glimmer’ in this otherwise dark journey I’m on. Thank you.”
Triggers cause anxieties to pile up. The more they pile up, the more they smother me. Glimmers inspire me to give my neurosis a good scrub, clean up my attitude, and fold and put away my worries.
But hons, them clothes ain’t gonna clean themselves. They just won’t. I have to notice them, and unless I make a concerted effort to be aware, they pass me by. Every morning, I do a little mindfulness session. I play affirmations on my playlist and encouraging music. A little hippie-dippy meditation alone time with God. Help me to be aware of glimmers, I ask of him. Because in truth, they happen to us all the time. In my natural state, I just need help with awareness. It’s been a game-changer.
Try to notice the glimmers today and strengthen your divine in whatever way that works for you. I’ll be over here praying and sage-ing, singing, and loving, and hoping and believing (with, of course, intermittent bouts of anxiety. Hey, Rome wasn’t built in a day, and it can’t be ALL glimmers, ALL the time. We are only human, after all – but there is much beauty and joy that goes unrecognized.
Because, to quote Ferris Bueller, ““Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.”
Util next piece, friends. Please be kinder than you have to. It’s a rough world out there. Spread all the glimmers you can.
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.
Some of y’all had your say. Now I’m going to have mine. I interrupt the “regularly scheduled programming” to have a little commentary on Christian Nationalism. (In a former blog, I once had a reader comment, “THIS is NO PLACE for POLITICS!” Um, it’s my little piece of real estate on the web, and my blog, and as such, I reserve the right to write whatever I damn well please. Aint nobody making you follow me. It’s still a free country! Not sure for how long, but…
“Bad Faith” on Amazon Prime is upsetting, terrifying, and should be recommended viewing for any soul who “follows Jesus.” It is not a “liberal” movie – many Jesus-loving believers who are NOT Christian Nationalists get their say too. Yes, we DO exist. Please consider giving it a watch.
I am absolutely sick that Jesus – the one who embodies the fruits of the spirit – charity, joy, peace, patience, kindness, goodness, generosity, gentleness, faithfulness, self-control, etc. – is being trotted out as an effigy in a MAGA hat, pimped out by “Christian” Nationalists with entitlement complexes, and being affixed to a movement that does not honor him in the least.
I cannot imagine Jesus waving an American flag any more than I can see him in a …
“I ❤️ ROME!” T-shirt.
The God who spoke us ALL into existence, and created the entire UNIVERSE, omnipresent and all-powerful, thinks WE – a people who do not even originate here but stole every inch of it – are the “chosen.”
The self-importance! The arrogance, to believe he chooses Americans above other nations and peoples, while having no concern for racism, poverty, human rights, feeding the hungry, or doing any damn thing that might humble them in the least.
How did we GET here? America ain’t all that anymore. I’m embarrassed right now. I imagine Jesus saying, “I know you not,” when seeing the hoards of entitled conservatives storming the White House. And the party has chosen the single least-like-Jesus person on the planet to head their cause.
Forgive us, God, for our utter arrogance. And forgive those who speak in word but not deed – even though I’m certain this is not a “they know not what they do” excuse. They know.
As a former Christian Nationalist myself years ago, I asked God to break my heart for what breaks his. And guess what? He didn’t break it on account of billionaires with megalomaniac tendencies. Or people who are intolerant, smug in their resolution that social justice doesn’t matter, or unwilling to see a point of view different from their own.
Be conservative if you want. But leave my Jesus OUT of your politics.
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.
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.
Dear Reader, yesterday was hard. I will write about it in a bit. But as I was resting this morning and going through the scazillion pictures on my phone, I came across some videos I’d taken to make a little TikTok about little things that make me happy. I had taken them before I knew I was facing cancer – but decided to make the video anyway. Because all the more reason to make it. All the more reason to take notice of good things. Not for the sake of toxic positivity, but because I’m trying not to let the negativity win. Blessed be, friends.
Words by Jana Greene 