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.
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.
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.
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.
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.
If I had a dime for every time I have heard this scripture in the church -telling me I’m “already well,” I would be a kajilionaire. And the words are said with love and good intention, and belief that “healed” means bopping up out of a wheelchair INSTANTLY.
I can only say so much about the subject, because I have been both a victim and a perpetrator of “faith healing.” Again, with all the best intentions. But much damage was done to my spirit on the road to heal my body. And with my intentions, I had probably given someone false hope. You feel spiritually orphaned when you stay ill.
“You’re already healed, you just don’t know it!” they told me, when walking was torment and the joint pain excruciating. Oh, thought I. I must have some flaw that keeps me from receiving. And as I got sicker, I felt like a disappointment to all who were so fervently praying for me.
Perhaps it’s the “demon of infirmary, which is a little trickier to toss, but don’t despair, Beloved! “The Word is a weapon, and we will command the enemy to leave your flesh!” Only it felt like I myself was being “cast out,” because I wouldn’t get well. I took it personally, and it seemed like they did too.
Still sick? *sigh* “Well, have you thought maybe you have a secret SIN? Everybody has secrets, but Jesus loves you anyway HALLELUJIA? and he knows your heart. Confess unto him, and you will be well! (Why does everything revolve around SIN in the church? Frankly, a God who can heal you but just won’t is not the same God I was taught was love.
I was told at one service by the pastor, “The metal in your leg from the injury has TURNED TO BONE! Get an x-ray, and you’ll see!” Faith healing seems Biblical, so to it we cleave.
Now, I consider myself reasonably intelligent. I get by. But brethren, I believed it. Because, well… cult reasons, honestly. I had invested my whole life in this system in which any disability they can’t hibbity-jibbity out of me in reasonable amount of time (or at all!) was a defect of the strength of my belief. I am a rabid people pleaser (working on that) so disappointing the clergy was of utmost concern.
I love the late Carrie Fisher, herself no stranger to things like addiction, depression, illness and the like. My favorite quote from her is, “Instant gratification takes too long.”
INSTANT GRATIFICATION TAKES TOO LONG. And maybe that’s why our faith is so impatient, so spiritually entitled. We are taught that we don’t deserve to be healed really, but it’s our birthright, so God has to do it. (Spoiler alert: God doesn’t have to do squat but love us and teach us to love in return.
Here’s the corker though, I think – and it’s kind of a piss-off here Earthside: I think we will all be ultimately healed. But we’ve just taken the healings that Jesus did as miracles when he was Earthside and assumed that same healing is for every person.
But on the physical plane, that may not be so. These are meat-suits, and they are temporary and bockity as all Hell. Creaky, apt to damage, prone to wear and tear. Several features do not work. The Church told me I bought the warranty, but if so, the warranty company ghosted me (I tried not to type, “but not the HOLY GHOST,” because she hasn’t gone anywhere…)
I believe our pain pains God – which I still think is true. But that logically deduces that there will be pain. And I wonder how much being a sickly kid emersed in an environment that tells me I am inherently bad dinged up my psyche. To add to that, I lived in an echo chamber as an adult, where nobody would admit seeing the emperor had NO CLOTHES, because they all believed like I did.
Maybe I’ll get that physical healing this side of eternity. God, I hope so. Science is making huge strides! I will welcome it. Western medicine, Eastern medicine, prayer, meditation, and breathwork? I’m going to throw EVERYTHING I can at this illness. I don’t think God faults me for it, either. I will keep praying for healing. But I will also not make the physical my god. I begged a seemingly aloof god to make me well. What I got is an incredibly compassionate God who inhabits this body with me. And sometimes that has to be sufficient, like his grace.
To pretend that we are all entitled to be able-bodied and expect such does our fellow humans a great disservice. It’s just another method of setting others apart in the name of God. But there is no separation. Your pain is my pain, too.
I think in a way, I did get my healing. And it was different from what I was told to expect. It didn’t come with tossing my walking cane to the side and doing a jig. It didn’t come as relief for my chronic, unrelenting pain, to be honest. And that bummed me out for a long time and kept me from healing on the inside.
But I did heal on the inside – I am still healing every single day, from the ‘inside.’
We are not ghosted by our birthrights. We are made of stardust and God-spit, with whatever infirmary becomes our new normal is a surface just a ding in the paint. It’ll buff right out. Meanwhile, beloveds, take gentle, loving care of yourselves. Body, mind, and especially Spirit.
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?
Send me your warm fuzzies, good vibies, and petitioning God for a good outcome today?
Having the skin cancer on my leg removed via MOHs surgery. Completely separate and unrelated to my leukemia, because, um…go big or go home, I guess? (*shrugs and cries simultaneously whilst rocking in fetal position, then gets up and deals with it because THEM’S THE BREAKS KID!*)
They biopsy around the legion (original legion has been removed) to get the margins and have a lab onsite to test each layer for malignancy, leaving the would open as they keep excising around it, until all cancerous cells are gone. It can take hours and hours.
It’s really not that big of a deal, especially with everyone else I’m having to contend with right now, health-wise. But I could do without the aggravation. But we all know aggravation is crappy at taking its turn, always rudely infringing on us at the least opportune times.
If you’re keeping up with my journey (I don’t know that it’s a journey solely about physical health (is it ever? we are not just our bodies, where our minds and souls live. Healing has to be a full-participation thing – and I’m going to be working on my spirit, mind, and emotional well-being with every bit as much fervor as I’m going to put into my physical self.
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.
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.
I do my best spiritual work from on the ground, apparently.
I can remember laying on my mat Kindergarten at naptimes at school, a skinny little girl laying curled in a ball, watching all my classmates fall asleep like falling asleep is just a normal thing people do or something.
From birth, my brain never shut up, and my home life was dysfunctional to the point of chaos. So, I would lay with my budding anxious neurosis on the vinal mat, unable to sleep; afraid to close my eyes (and afraid not to.) No sleep, only unease.
My teacher, Mrs. Carter would stand over me and holler in front of the whole class, “CLOSE YOUR EYES, JANA!” I can remember squeezing them together and doing a rudimentary version of praying. It was a crude and simple exchange with the God of my Vacation Bible School stories. Even as a child, I seemed to know instinctively that there is more help available from the Divine than we ask for or expect.
“I can’t calm my mind,” I would have said to the adults in my life, had I the language to ask for what I needed. But I didn’t. Little girls with big, grown-up worries don’t know how to self-soothe, because OF COURSE they don’t; and they surely don’t know how to articulate anxiety or ask for help calming their minds.
That’s where I remember doing my first earnest prayers – on the kindergarten mat – asking of Jesus who already lives in my heart to be seen and soothed, comforted and feel less alone.
Twenty-seven years later, I found myself on the bathroom floor of my house, battling an alcohol addiction, wishing to die. On January 3, 2001, I came to the end of myself on that floor. Wretching, sick, alone, and desperate. From flat on the tiled floor, my fist in the air, eyes tinged in red, and skin yellowing, yelling at God and no one in particular, I came to the end of myself.
It reminded me of the biblical story of Jacob “going to the mat” with God in an all-night WrestleMania event. “I’m not going to take this laying down!” Jacob was thinking. But he ended up exhausted and limping, which is how most of us end up in that mindset, if we are not careful.
I had prayed many, many times before for sobriety, but there was a different outcome on that day. A peace descended on me like a dove. In my sickness and desperation, I was met on the floor by a God undeterred from my anxiety. One minute at a time, and then one hour, then one day, week, month, year… that was 23 years ago. A lifetime ago.
“I CAN’T CALM MY MIND” I simply told him. And here’s the thing: I know the same Spirit who curled up with me on my kindergarten nap mat is the same Spirit who met me in the bathroom, me clinging to the toilet, him not at all afraid to get the hem of his garment dirty on my behalf.
I am now learning to meditate now, and it’s a challenge. My husband, who never seems to tire of my endless new “hobbies” took me to get a nice, double-padded yoga mat. I’ve been on quite the little awakening for several years now and am learning so much. I absolutely love incorporating the tools I’m learning into my faith life, which is not a conflict with the holiness of God at all, no matter what Debbie at the Pentecostal church says. (I plan to write at length about what I’m learning, if you’d like to journey with me.)
The first group meditation session I went to, I dutifully spread out my mat amongst the hippies and lovers and seekers at the group event, excited to learn this new coping mechanism. The atmosphere was thick with love and cleansing. Yet can you guess what the prevailing thought was upon getting situated?
I CAN’T CALM MY MIND.
“Okay,” I felt Spirit say, over the Native American flute music and swirling clouds of burning sage (that former evangelical ‘me’ would be scandalized by.) “I am in you and with you and around you.”
If you feel you are on the “floor” in some regard to your life, I just want to remind you that it’s a nice, stable surface from which to start. You are simply grounding, darlings. The floor is a very vulnerable place to be, but be vulnerable we must, if we are to grow. We glorify striving, when simply being is enough.
So just ‘be’ today, friends.
Just be, Groundlings. And don’t forget to breathe. And ask the Universe to make you ever more aware of his presence. If we increase our awareness of this supernatural experience, we begin to see God everywhere – in every ONE.
In you, too! Ready to see, soothe, and comfort you – meeting you on hallowed ground.
Words by Jana Greene 