What good is getting an accurate diagnosis, if there’s no cure? A woman I follow on Social media posed this question and it got me thinking. She also has Ehlers Danlos Syndrome.
Knowledge is power, and it explained a whole lifetime of things.
Every day of second grade, I had to spend afternoons with a tutor after school because I held my pencil “wrong.” I physically cannot hold it that way. My fingers wouldn’t work, still don’t.
I’ve had bad migraines all my life.
I cut myself constantly with knives in the kitchen, even as a kid. I’ve managed to cut myself with safety scissors.
Buttons are the devil.
Physical Education class was a nightmare. I kept getting injured doing the simplest things, and “sat out” many times, resulting “F’s” in cthat class. Turned ankles. Sprains. PE teachers are MERCILESS. I was fussed at for “not trying.” Or worse – “faking.” Id love to look them up and let them know what’s up.
I thought everyone got dizzy tying their shoes, every time.
Having a super shitty immune function, was sick constantly. Wouldn’t find out until adulthood I have immune deficiency.
I was in some degree of pain at all times – every joint. As far back as I can remember. Of course as the laxity in my joints increases with age, the pain gets worse.
My ankles are so weak, I broke my right one in two places from standing getting up to pee in thre middle of the night. Just torqued it wrong. I was so accustomed to pain, I walked on it for 11 days anyway before going to the doctor.
I always required more anesthesia, which is a redhead thing and an EDS thing.
There was a reason my body cannot do autonomic functions adequately – tempature regulation, blood pressure – just can’t handle it. The fluctuations that were such a mystery all my life make sense.
The hyper-mobility made for some good “party tricks” – contortionist stuff with knees and elbows, etc., but I had no idea it was a medical issue ad a young adult.
Knowing what was wrong – even though there is no cure and no really effective treatment – was momentous.
It means the difference between managing symptoms with some chance of alleviating some of the severity. It means the enlightenment of your own body, after feeling like you were made defectively.
I speak up for myself now. Well, sometimes. As long as it doesn’t rock the boat TOO much. As long as the person I have conflict with won’t stop loving me because I’m mad. Only when I’ve rolled the issue OVER and OVER I’m my brain ad nauseam and have decided I’m with a safe person. Only after I’ve played out the worst case scenario in my head, mini-grieved all possible outcomes. At times, after I speak my peace, (because I’ve learned my peace has value, too,) I will fret and worry that I’ve upset someone. Doesn’t matter if it concerns life events or little frustrations, I speak. Even if it’s a whisper, I speak. Even though I know assertion-guilt will try to make me feel like a bad human. I’m starting – with fits and stops – to say when I’ve been hurt or bothered, even though I’ve been a people pleaser all my life. So… No, You cannot talk to me like that. You may not treat me like that. Little Me had no say, but I’m re-parenting her, you see. I’m protecting her. I care what she has to say. Her feelings, views, and passions have value. I’m teaching her things that I (somehow managed) to teach my own daughters. They speak up for themselves, without fear of abandonment, because they know they’re safe. And Little Me is safe now too, finding her voice and using it. Progress, not perfection.
My concept of God as love means there’s no need to “smite my enemies.” Because our Source Is not on anyone’s “team;” he’s the owner and manager, working things to your benefit – but to theirs, also. We think people who have wronged us deserve wrath, and plead God to avenge us, only to demand forgiveness when we have wronged others. And it’s taken me years to accept that “if God is for me, who can be against me?” applies to every human, everywhere, who is lugging a body around on this plane of existence. More and more, I think this place is a University of sorts. We are here to learn how to love each other and how to love God, because obviously we still haven’t gotten the lesson. That’s okay. Everything in good time. Our Earth Suits (janky as mine may be) are vehicles and vehicles only. I forget that sometimes when they pain gets unbearable. And our assignment, I think, is to retain our kindness through the shitstorm, er, um…journey. Kindness does beautiful things to otherwise very negative people. If we do this leg of our journey and stay kind, that kindness chemically and spiritually changes a person. And if it doesn’t? You’ve ventured everything for love, and will have many more opportunities. We are all trying to figure out hard stuff here. That’s my story and I’m stickin’ to it. Love to all today!
Sometimes when I pray, I’m not even sure what to pray for anymore. But when God brings someone to my mind, that’s the impetus to pray for them.
I don’t mean giving God “instructions” on how to help someone, which I used to call “praying with specificity.” I replaced elaborate prayers with simple trust in God, because the most eloquent prayers are “help help help” and “thank you thank you thank you” (as my favorite author Anne Lamott opines.)
Reconstructing my faith has evolved how I speak with God.
I ask and then I try to listen. Because there is no wrong way to pray, and prayer is designed to be communication from one sentient being to a supreme being, no holds barred.
Once I saw a movie that recommended having a “War Room” – a physical place to go to pray where the reception is clearest to God and where mighty battles are fought in the heavenlies, waiting for our next words to change the outcome in supernatural realms.
So of course I decorated my closet with scripture and crosses aplenty. But all I managed to do was feel guilty that I wasn’t praying more (or right?) every damn time I had to grab a pair of shoes out of the closet.
Was I praying enough? What if I don’t and when I get to Heaven, God informs me that he really wanted to do this magnificent thing, but I was two beggings short of getting the outcome I desired.
See, that puts the onus on me. And the onus is not on me – it is on Love.
I don’t make a big show for myself now, prostrate in my literal prayer “closet,” striving, striving, striving to be the person “God created me to be.” Building a tower of Babylon with my puny, pleading words (which are beautiful to him, by the way, but his love is not dependent upon them.)
No. I mean that if you come to my mind during the course of my day, I am simply asking God to love on you in a way that’s tangible. God loves n us through one another, nature, laughter, and hugs from friends.
If you have a need or a heartbreak, I focus my intention on your hurt as best I can, and believe in advance that he is walking alongside you, no matter what event is anguishing you. Being a very visual person, I picture you in a cloud of love, total acceptance, resolution, and peace. I can’t describe it any better than that, but trust me, it’s better than that.
Just like us, the Holy Spirit craves connection. That’s all prayer really is.
And I ask him to increase your awareness of him in and around us. Because he is always at work in and around us, even when we aren’t begging for his favor. I pray he uses me in any capacity he sees fit to convey his great love.
“Broken lines, broken strings, Broken threads, broken springs, Broken idols, broken heads, People sleeping in broken beds Ain’t no use jiving Ain’t no use joking Everything is broken” –
-The Kenny Wayne Shepherd Band
Our microwave finally pooped out. After 18+ years, it’s dead. Our stove isn’t heating up like it should. I have to be SO careful about what I eat and this makes food preparation that much more difficult.
We have had to replace our fridge / washer / dryer in just the past couple of years because they all died at once. We have three cars, only one with working A/C, and she had 200,000+ miles on it. We love that car. She’s a real trooper.
And I get the feeling like that’s ALL of us right now: Look at us all – an army of badasses. Damn if we aren’t all freaking troopers for making it through whatever shitshow the word is currently.
And all of that wouldn’t be so bad if I wasn’t broken too. Because today I am feeling very, very broken. Like literally all of my joints feel especially loose and painful. If my Earth Suit did it’s JOB to keep things stable and in place, that would be amazing.
I dislocated my thumb again today opening a Topo Chico, for example. What a stupid injury. My injuries are never, “She jumped out of a plane and survived!,” or “she went water skiing and now she is a human pretzel.” No. More like… the time I stepped out of the bed to go pee in the middle of the night and just torqued my right ankle, which snapped the bone. Then I walked around on that broken ankle for 11 days, too stubborn to get it checked out. By the time I got an X-ray, it was broken in TWO places, and surgical pins, plates, and rods were out in. But I digress.
The POINT is I can injure myself in the most asinine ways. Most things in life are made up of broken parts, and I’m eternally trying to learn how to process that reality.
We are all just walking eachother home,” is my new favorite observation.
Now whether we get “home” in a rust bucket (aka my actual body), or a well-appointed, nice and reliable sedan – a nice, tidy life that turned out great because you did “all the right things,” well, that’s for serendipity to hash out.
And that’s the cosmic irony, isn’t it? If our lives were neat and tidy, we’d have no real need for each other. We are only really here to learn how to love and accept love in return.
We need doctors who will help us manage our pain. We need microwave manufacturers. And we need friends, because there are 7 billion people on this planet and not one of us knows what we are doing. Not ONE. But maybe a few can show you the route home, and you can – in kind – do the same.
So, lean on to eachother like your life depends on it, because it does. Let’s spiritually exit the machinery that cranks out unrealistic expectations, and walk arm-in-arm, until we’re “home.”
I used to tell people, “God can fix you.” But now I say, You’re not broken. You are not bad. You don’t need fixing. You need loving. Love put you back together,
On the day You breathed your first. You already have it on-board. God already inhabits you. In every loving gesture you express To humankind (or animal-kind.) In every breath, holiness. In every feeling of fresh hope, In every laugh, sacred joy. You are whole. You are not broken, No matter the evidence Stacked against you. Keep your head up! God is FOR you. You are loved.
Happy Easter. I don’t want to be that person who bums everybody out with their posts of grief, but I have to tell you this Easter feels more like death than resurrection.
Death is present and lurking, but the joke’s on Death, because it’s defeated. It is finished. But Death – and about 8 billion other voices, if you give them credence – will tell you otherwise.
It is finished, even if we have to live in a broken world.
It’s is finished, meaning our suffering here is not part and parcel of who we are. We don’t take it with us. Only love travels that well.
It is finished, even when our hearts lurch with missing someone so badly it physically hurts.
It is finished, even though the sticky residue of suffering gums up the works, and the whole damn planet seems to have lost its collective mind.
I won’t ask, “Death, where is your sting?” because I call BS on that. It stings like Hell. It hurts like a mother-*. I’m not going to deny the pain of being human just to sell you on Pollyanna positivity. I’m certainly not going to sell you religion, which professes to have all the answers but I assure you, does not.
But Death, after the sting, is never the victor. Our spirits outlive Death. Nothing can keep us from the love of God. Not even ourselves.
He is risen, friends.
And I’m telling you that with a puffy frog-face from crying, unbrushed hair, balled fists, a heart full of questioning incredulousness, and deep pain. I’m writing this because maybe you’re hurting too.
Maybe you’re pissed off, and for good reason. Maybe you’re sick and feel hopeless. I just want to remind you that you are also risen.
Risen is by far more your identity than broken, or even dead.
Sometimes resurrection doesn’t look like glorious renderings of an ancient, empty tomb – beams of light streaming from within, all CBN Network-style.
Sometimes it looks just like you- in all your holy, grieving glory. Slogging through the messy inconveniences and crippling agonies of life, interspersed with great bursts of love and laughter. All of us redeemed ragamuffin kids of God, all of us made of stardust, mud, and love.
My gastroperesis is flaring so hard I’m barely able to keep any food down. This throws other medical issues into a hellish spiral.
My chronic pain has been ridiculous.
We have very difficult things to deal with in the family right now. Really hard things.
I’ve cried several times today, which is no small feat when you’re on antidepressants. It felt awful to cry, and then really good…cleansing.
And it seems a counter-intuitive measure to wallow around in pain and sadness, but every once in a while, you need a good wallow.
Today I will cry, and rest, and bitch about my woes to my ever-patient husband.
I will likely beat myself up for having to cancel plans with friends, and hate myself for feeling melancholy.
I will feel like I am not handling life well AT ALL. (While reminding myself that despite it all, knowing I’m doing my very best.)
At some point, to be transparent, I will feel guilty for even having this little nervy-B, guilty for unloading on my husband, and guilty for having the audacity to complain about this life, when I am truly blessed in so many ways.
I’m pretty sure I’m not done crying today. God, I hope not. There’s a long line of tears queued up in my spirit that need to be purged.
I hope that tomorrow, by some measured miracle, the world on fire won’t seem quite so much like utter doom.
Today I will wallow. I’ll sleep and watch Schitt’s Creek (it’s a balm to my soul), and talk with God about WHAT IS THE DEAL WITH MY LIFE RIGHT NOW. And I’ll look forward to better days.
Because they are always on the way, you know – better ones.
The legendary Hubble Space Telescope, operated by NASA and the European Space Agency (ESA) captured a dazzling snapshot of a large galaxy pulling cosmic material away from a smaller galaxy, and my mental health is HERE for it.
It is helping my mental health because I am fascinated with all things galactic, and every time a new image is captured by Hubble, my worries seem to shrink. It’s impossible to be in wonder and see while nursing a grudge or fussing over a human problem.
Not that our problems aren’t real. Or important. They ARE important, even to the Being who came up with the crazy idea of eternity.
Infinite ness is not a concept we default to. We cannot wrap our minds around the concept of endlessness. But in a world where our troubles seem the most infinite thing we know, Hubble reminds me to zoom out.
Yes, I am hurting. My body aches. My heart grieves. The pandemic looms. The world’s a hot mess express.
Would you look at this economy?
This sociological crap-shoot we are calling “life.”
We become Chicken Littles, running in circles exclaiming, “the sky is falling! The sky is falling!” and then we like to proclaim anyone who doesn’t join our panic is Pollyanna about reality.
Okay…but ZOOM OUT. Pan the picture wider, then wider still.
Imagine yourself and all your pain, a tiny speck on a giant blue marble – just one of billions. Imagine this as an image on your iPhone, in hi-def, as most problems seem.
Now imagine that the same Creator who spins planets in orbit cares intimately about what you do. He cares about you not only as a marble-dweller, but a miracle of cells and thoughts and feelings.
Imagine that this Being of Love is intimate with your every heartache and just as concerned about the state of you as He is the state of the Multiverse.
Just zoom out of the picture, wider and wider. See how perfect the orbits are? Check out those stars. Wow! Each and every one a sun. Each and every molecule of the cosmos is worshipping just by existing.
Existence is worship.
We cannot reach the end of it, just like we cannot reach yet end of Love itself.
Just zoom out. It’s going to be okay.
God is zooming in on us. Let your heart marinate in the magnificence of this concept – a Love so endless, Hubble will never reach it.
Many of you know I struggle with multiple illnesses that can be very debilitating. I know there are some of you going through similar things.
I truly live one day at a time, but for the first time in a minute, I am feeling hopeful about the things I CAN do that are in my power. It’s time to step up my game. Instead of fighting just to survive, I’d like to fight to be as healthy as I can be.
Several really good things are coming up and I want to be at my best. GOOD THINGS. Some travel. Some reconnecting with people I love. It’s very easy to fall into defeatist thinking, but I need to re-center and here’s how I plan to go about it. Sometimes I need a plan!
Today I’m meeting with a nutritionist to find out everything I can do for the gastroperesis. That’s going to mean yet MORE changes. Although I’ve lost a lot of weight, it’s not the healthy way. I must absolutely be better about keeping my diabetes in check as well. I have to eat cleaner, which is hard because dammit, I reward myself with food – the head game relationship I have with it is LOADED, man.
Today, I make time for daily physical therapy (at home) to minimize my dislocations and injuries. There will always be injuries and mobility issues, but I have to do better. The last thing you feel like doing in pain is the exercises, but I have to push through to help keep he musculature strong to support each joint.
Today I will rest when my body says to rest. It’s also difficult with a genetically deficient immune system because I get sick often. My kidneys are not in good shape, although my last labs indicate they haven’t failed further recently. That is what we call a “praise report” right there.
Today I will make time to get quiet and still, because I suck at stillness but my spirit needs it. I will make time to show gratitude deliberately. I will be thankful for all the ways I’m blessed, but I will also be thankful “in advance” of getting healthier, BELIEVING for it. (Y’all remind me I said this later when I get discouraged.)
I will manage my pain as need be, realizing pain management is self care. This is sometimes difficult because I can no longer take Advil or Alieve, or any other anti-inflammatory; which is unfortunate because my conditions are inflammatory. (God, I do miss Advil something awful.
And here’s where I run into trouble: I just have to do all of THIS every single day. That’s overwhelming!
I need to run my health like I run my alcoholism recovery – one single day at a time. Don’t consider “forever,” just do one single good and loving thing towards my body and soul at a time. Just one thing. Then another. I’ll handle tomorrow TOMORROW.
Life is tough but I’m pretty scrappy. I have a lot to learn and a long way to go. But today I start trying to do so with purpose, because I’m not going through all of this just to add more sick years to my life, but to ENJOY this juicy life.
This time of year makes me reflect on the mind-blowing kindness and generosity that me and my little family were shown back in the day.
You see, this picture brings back SO many memories…some of them heart-wrenching.
They say a picture is worth a thousand words, but for me, this one is worth a million. I hadn’t seen it in forever, but I remember taking it like it was yesterday!
I had just left the girls’ father and we were legally separated. The girls and I had nowhere to go, so a dear friend gave me a reduced rate to stay temporarily in Atlantic Towers (such a blessing.)
This photo was taken there. I loved that it had bright pink walls. I told the girls it was because we were so full of GIRL POWER, they painted them pink special for us.
At the time, I had a restraining order out on my ex (so you KNOW that added stress) and no money. I was receiving NO help. And I mean, NO help. Not even from my own family members. That was a brutal learning curve.
I went from one part time job to four jobs to feed my kids. I wrote freelance, worked for a realtor, became the receptionist at another company, and cleaned motel rooms on the weekends. When I was with my babies I worried how I would take care of them myself. When I was at work, I missed them terribly. Mommy guilt was only eclipsed by pure fear.
I had a new sobriety that was only three or four years old, and I was DESPERATELY trying to keep it and not start drinking again. (I did keep my date of sobriety which is Jan. 3, 2001.)
I’d left everything behind but a few sticks of furniture, the clothes on our backs, and the kids’ Barbie toys. Not much else.
I was truly starting over after 14 years in a bad marriage and struggling not to drink, after nearly killing myself with alcohol only a few short years prior.
My girls look happy in this picture, but it was a rough time for them too. My goal was to shield them from my own grown-up problems, and make it an adventure of sorts. They were the lights of my life then. (And they still are.)
At the time, I could not imagine how I would get through that difficult season. I lost 80 pounds from stress. I had been a stay at home mom all my daughters lives, and had ZERO IDEA what would happen to all of us.
But then a miracle happened…and the venue for said miracle was the Carolina and Kure Beach communities, whose members rallied around us that year in the early 2000’s.
And I mean they rallied!
It was Christmas time, which made everything harder, but the local fire station gifted my girls with toys from Santa. A dear friend bought them bicycles!. One friend kept my girls in donated clothes for a year. One amazing friend invited us over for Thanksgiving and Christmas and welcomed us as if we were all true family. Another helped us out with food for a while. One watched my girls for me when I worked. And another helped me keep the heat on one particularly cold month.) One practically adopted me and treated me like a daughter, and does still.
I did nothing to deserve any of that, but the magnitude of blessing still floors me.
I wasn’t FROM there, you see. I wasn’t a “local;” But they MADE me a local through kindness. Dozens of (then) strangers came out of the woodwork. I could do nothing for any of them, nothing. They just poured forth things we needed, acts of friendship, and so much support, and love. I’m happy to report I cherish them still today.
Meanwhile, I learned how to work my ass off and provide for my kids. I worked on my own issues. I put up strong, necessary boundaries. I learned how to forgive myself. And I managed to stay sober, all glory to God!)
So from one old snapshot for TBT came a tidal wave of gratitude today,, and with that, this very wordy, rambling post.
Now when I look at these 9 and 12 year old faces in the photo, I can rest easy knowing that these two grew up to be beautiful, funny, kind-hearted people. They grew up awesome, and the dark times only grew us closer.
They are 26 and 29 now. My world.
Boy, I wish I had truly trusted God when I was going through it! But my points are twofold:
When at your absolute darkest, keep going kiddo. You CAN do hard things, I promise. You can, and you will. And if you lean into Source, you’ll FLOURISH.
Community is so important. We are all made designed to need each other. Every single member of every community is precious.
And all you single mamas going through the midst of a nightmare like this, I promise it’s true for YOU and your babies, too!
These days I have new struggles, but I try to pay forward any and every kindness shown to me. I try to diversify my kindness portfolio, as it were. Love on everyone, I’m every circumstance. I fall short a LOT, but oh the joy in paying kindness forward!
But it seems important to remind you, if you’re hurting:
The kids really WILL be ok. You ARE stronger than you think. It’s OKAY to ask for help. It’s EVEN OKAY to accept help! God has not abandoned you There are wonderful, amazing things awaiting you in the other side of the mess you’re going through.
Love is the singular thing, and absolutely everything, all at once. All are in it and of it, imbued with this remedy. It is the answer to whatever ails your heart. Love is all that lives on after our Earth Suits fail. It is fed and starved by a thousand moods, yet always nourishes. Love lands in its feet. It’s the only thing we were legit created to experience. Love is like sacred oil – fragrant and dousing and scandalously generous. It leaves a film on you all of your days, and everyone in your world gets a little “oily” when you touch their lives. (Touch them lots!) Love pisses people off when it is believed undeserved, when really people are under-served by it. It breaks the economy of deficit, as its endless. But even though it’s free, people seem to like hoarding it. Many enjoy rationing it, as if there was a finite supply. As if it originated for us, by us. As if we weren’t given it in order to pass it on. Love is a Being. And a Doing. It’s an action and a sacrifice. The feet of Love can walk through fire to get to another hurting soul, and strike up a dance to celebrate itself. Love has wings to fly us to a place of acceptance, and roller skates with which to flee from hate in all its forms. It’s the only thing that will ever make a dent in suffering, and the ultimate remedy for pain. Love is all we take with us. Spread that stuff around copiously. God loves you and so do I. ❤️
Thank you for all prayers and well-wishes. I’d love to say the migraine is fine, but it’s not.
Disappointment is waking up with the pain that you hoped to have “slept off.” It is less intense today, so far (and thank God,) but is still present.
It’s been many moons since I’ve had a migraine reaction this bad. The EDS /POTs are contributing factors, but for some reason, it’s amped up beyond what I can stand.
On top of everything else going on with my body, it’s too much. And I told God so last night.
I told him I’m most unhappy with the earth suit he chose for me to haul my spirit around in this earthly domain.
“What’s the big idea,” I may have said. “I don’t need a super healthy bod. I’m not asking to be a@&)/a% Kardashian body, for shit’s sake. I don’t need a body with which run marathons.
Or even one that has a normal degree of health to regularly do normalsauce things like take long walks. Or hell…even have the ability to open a jar without dislocating my wrist or throwing my thumb out of the socket. I’m not demanding , really. Just give me the energy to go to the grocery store without it sapping me for the rest of the day.
Id ust like to be able to EXIST without a constant barrage of miscellaneous disabilities and constant PAIN.”
A migraine is not a headache. It’s a gauntlet.
Here is a synopsis of my migraine thoughts yesterday:
The pain is so bad, I think it will kill me. Don’t even CARE if it kills me. PLEASE let it kill me. The light, it burns. Even the lamp light. Even the NIGHT LIGHT light. Even the lines of light coming under my light-blocking shades.
The nausea. It’s hellish. The thought of barfing with this headache is going to make a migraine I can not possibly getting worse, WORSE.
If my head were a giant grape, I could squish it and the pain would stop. What can I use to squish my grape-head? Can I hire someon to squish it, as a mission of mercy? Everything I see is double. Everything I see has an aura. Lay still and maybe the migraine will stop. Holy shit, I can’t just lay still here without it searing my brain. Holy shit, I can’t move around without it searing my brain. Holy shit WHATS A GIRL GOTTA DO HERE TO GET RID OF A MIGRAINE!?
There are no words in the human language to describe severe migraine suffering.
How do you define “anxiety,” and how does your anxiety define you?
Anxiety would have me believe that life is just a series of events to kill time while I wait for certain tragedy to strike. As morose as that sounds, if I’m honest, it’s how it FEELS. It robs today of its joy and tomorrow it’s potential.
I would do well to remember that feelings are not facts. Waiting for the “other shoe to drop” is not a strategy for a happy life.
It feels like it will protect your heart to believe the worst, because anything less than horrible will be a nice surprise.
The truth is closer to this: “Life is full of nice surprises, but we will never notice them by expecting the worst.”
Feeding the doom is an old skill I honed in childhood trauma that no longer serves me. It hasn’t served me in years.
It’s a work in progress. I hand my anxiety off to God every day, and say, “Here, take this please. It’s heavy and awkward to carry and outdated.”
I do not wish to take it to recycling anymore, which is what it’s like to expect anxiety to be repurposed.
No. Every day, I give it up and hope God takes it to the dump. He always does, but I always seem to have a fresh supply the next day.
He is unbothered by it. It’s not heavy for him, awkward in size and shape.
Today, I hand in my anxiety yet again, so that my hands are free for joy and potential. And my heart is free to reject a diagnosis of doom.
How do you define “anxiety,” and how does your anxiety define you?
In the tradition of writing transparently, I have to tell you that I am more anxious than I have been in years. Matter of fact, my heart is racing out of my heart this moment. Enough with the “flight response” already. I’m trying to live here.
The whole world feels like it’s a flaming dumpster fire, and I’ve been sick and in pain recently, which helps NOTHING. And then you’ve got the whole mental illness angle, which is LIT fam! (Gotta make a little joke to deal with life on life’s terms.)
Anxiety would have me believe that life is just a series of events to kill time while I wait for certain tragedy to strike. As morose as that sounds, it’s how FEEL. It robs today of its joy and tomorrow of it’s potential. I would do well to remember that feelings are not facts. Waiting for the “other shoe to drop” is not a strategy for a happy life. But dayum, that other shoe is awfully loose!
Our emotions are a valid barometer to measure what your mind and soul. And as extreme feelers, we have to keep them from running the whole-ass show.
It’s a work in progress. I hand my anxiety off to God every day, and say, “Here, take this please. It’s heavy and awkward to carry and WAY outdated. Fear served me as a child; it doesn’t get handed the reins anymore because I choose to rebuke it, a thousand times a day. Plus, it seems to have visitation rights.
The Universe is unbothered by it. It’s not heavy for him, awkward in size and shape. Handing off the heft of it has to be an INTENTIONAL act on my part. The trash ain’t gonna take itself out.
Anxiety feels like it will protect your heart to believe the worst, because anything less than horrible will be a nice surprise. The truth is closer to this: “Life is full of nice surprises, but we will never notice them by expecting the worst.” And expecting the worst is my default already.
Feeding the doom is an old skill I homed in childhood trauma that no longer serves me. It hasn’t served me in years. Yet in my lizard brain (the amygdala) launches a flight-or-fight response to beat all… a profound throat-punch to the Spirit. So then I have anxiety AND a soul bruise to complete the insult. And who needs that?
To be honest, some days Anxiety is the ringmaster of the circus which is my mind, but I’m in therapy and working on it. *Cue the clowns and dancing ponies. Clowns are terrifying, by the way, just like extreme worry. As it turns out, this IS my circus, and these ARE my monkeys.
Wake, surrender, make coffee, surrender, clean the house, surrender, make dinner, surrender … endless opportunities to surrender. Surrender is not a one-stop-shop. It’s a constant dance, at least for me.
God bless us, every one.
God, you are the Source of all that is good and all that is love. I can’t peek around the corners to see what’s coming next in this crazy world, in this disabled body. I trust that you have a bird’s eye view and my best interest at heart. I have to trust you are LOVE. ❤
This morning, I woke up early in the great state of Georgia.
Two of my dearest friends in the world accompanied me to a conference that addressed a faith reconstructed. It was incredible. The teachings were what so many evangelicals (and I was one for most of my life,) would consider utterly scandalous.
Y’all, LOVE that rich, pure, and bounteous SHOULD be scandalous. The most passionate love stories always are.
I didn’t move for a while when I woke, because I simply couldn’t. (If you don’t already think I’m nutty, you might now. And I’m okay with that)
I was pinned in place but this momentous, ridiculously extravagant sensation of love.
It was so thick in the air, it felt womb-ish, like a swim in calm ocean, flowing and bobbing. Or being swaddled like a baby, feeling nurtured and safe.
I didn’t fight it, like so tend to do. I didn’t negate it with my usual self-loathing talk. I always feel “powerless” against my own thoughts. My insecurities are members of a terrorist organization of sorts. During my (literal) “come to Jesus,” I discovered that I don’t have to negotiate with terrorists. I get to choose.
No, instead of fighting and fretting against the swell of love, I just rested in it. It was overwhelming, glorious, and unlike any experience I’ve had in a half-century of Christian fundamentalism. There was not even a trace of shame involved. I was fresh out of bothers for a spell.
At some point, I “feel” God say something to the effect of: “Please don’t talk and think mean thoughts about my little girl. I love her so much.” Wait WHAT!?
“You heard,” says gentle but firm Holy Spirit, her voice strong and convincing.
That little girl is me.
This weekend was like a speed-dating session with my true identity. Lots of uncomfortable moments. Lots of connecting. Lots of nerves. The result is this radical, rich, ridiculous grace for others.
I MUST share what I experienced in the wee hours of the morning with you. I have to. Because it’s LIFE.
Love is life.
Sometimes the supernatural doesn’t come like a lightning strike, dramatic and jarring. It’s not always signs and wonders that the church proper chases for a dopamine hit and considers evidence of a Being of pure Love.
No, sometimes it’s a soul hug first thing in the morning. Supernatural revelation can be realizing you aren’t a cosmic mistake; that you have belonged to Source since before the formation of the Universe. That He belongs to US. I know it sounds strange. But I’m okay with that too.
I welcome the chance to tell you how incredibly loved you are this day.
I don’t want to convert you.
I have no ulterior motives.
I don’t want to change you.
I have no agenda.
I don’t want to push religiousity. Matter of fact, religion is the whole problem. It has almost nothing to do with the actual Trinity, which invites us to a beautiful dance that includes us all.
And as a result of this Great Forgetting , the church can be stingy with the very thing it’s attempting to sell: Love. Purpose. Being.
This weekend, I feel like I had a heart transplant, and I couldn’t be happier.
My prayer today is that you wrap your arms around yourself and hug. Don’t rush it. Really hug yourself tight. Consider it a hug from me.
And so much better – it will be a hug from Papa God. He is wild about you.
May you come to the overwhelming realization of who you really are, and that the opposite of Love is fear. I learned that I don’t have to rent Fear a room in my head. Evict that sucker.
May your awareness of the supernatural be increased so that you can recognize when God “winks” at you.
May you come to know and (this is the hard part) ACCEPT the TRUTH about your inherent value, which is priceless.
Take one lifetime of Old Time Religion. Stir in two cups of Fear-Based Theology. Sprinkle in 2 tbsp of unintentional judginess, three tbsp of Obviously I’m Right, work through dough. Add additional The Bible CLEARLY Says! to taste.
While religious “dough” is trying to rise, but just kind of petering out, prepare in a shofar – I mean BOWL:
Two cups each of Chronic Pain and Debilitating Illness powder that has been sifted through a “name it and claim it” sieve for 40 years, but it’s still lumpy.
Add 4 tbsp frustration, and a dash of Must Not Be Worthy of Healing. Stir in a packet of What Will My Fundamentalist Friends Think. Cry about this step for approximately three more years.
Check ingredients in first bowl to make sure dough is indeed rising. But nope. It’s just sitting there in a big glop.
In yet another bowl, add one adult child who has come out as bisexual, which was NOT in the original recipe, so sayeth the Expectations Set Forth by the Church. Add a smidge of What Will My Fundamentalist Friends Think (if you have any left, which is doubtful. We go through it like gangbusters around here!)
Decide to add many dollups of Mother Love anyway (heck, dump in however much you have,) and set the kitchen timer to two more years on the “acceptance” setting. This is a wet ingredient, so thinning it out will just make it easier to spread. Use liberally.
Open up the pantry and see what else you have that might somehow make it more palatable.
Aww, shucks. All you have is a Costco-sized box a bag of Everything Else Life Can Throw At You. That stuff is SPICY. Always check the label…let’s see…it contains Mental Health Challenges, Losing Mobility, Family Estrangements, Crippling Anxiety, Bouts of Financial Struggle, Alcoholism, Codependency, Childhood Trauma, and 1000 grams of pure Shame Concentrate.
Going back to the bowl, taste the batter. See that it is bad. Mix all ingredients. See that it is WORSE.
While waiting for the timer, it’s important to assume that the Master Chef is angry and frustrated with you. Kind of like an astral Gordon Ramsey or something.
Assure yourself the whole Universe is against you, as is everyone you know and love who is following directions from a 2,000 year old book of recipes that several hundred fallible human people contributed to. Kind of like Gramma’s recipe box that had a hundred food-stained index recipe cards from her friends shoved into between the pages. Make sure to take everything out of context for best results.
Preheat oven to 400 degrees and when timer sounds, decide on how much savory Self-Doubt to use. Seasonings come in “I’m a Worthless Sinner,” and “Searing Disappointment” flavors.
Ask yourself WHAT ARE YOU DOING? Am I just a shitty cook, or so I just have so few ingredients to work with, I’m having a hard time accepting the result?
And what if I’ve been forgetting the Main Ingredient all along?
Next (scary) step:
Decide you’re tired of fear-based faith, dust off your hands, open your heart, ask the Universe to help you see what is Truth, battle-weary, heavy-hearted, and feeling raw inside like dough that won’t rise.
Decide to put all judgement and Christian-ese down the garbage disposal. The Expectations of Other People went bad a long time ago and is really stinking up the place.
Decide to fold Unconditional Love into every single recipe. Never run out! Keep it on the top of every list so you always have enough.
Follow the example set by Jesus always…He is always cooking up something GOOD.
Next, march all three containers used previously out your back door. Gently set down all three, and leave them outside to think about what they’ve done.
Now – this is important – turn off the oven. Nobody is burning on my new watch!
You are not alone, Chef Self.
So join a “cooking” club – one that is comprised of other Seekers with open hearts who want to get at the meat of the Truth, and offer you endless sugar.
Flip the script. Read the instructions anew.
Take one bowl – the most chipped and beat up one you got, and butter it with kindness.
Then invite all your friends over to help you create a masterpiece.
All you will need is:
8 cups HOPE – brimming. Five tbsp of self-forgiveness. A heaping scoop of Studying what the Cookbook Really Calls For – reading between the lines. A tbsp of of Learning to Love Yourself Too will hold it all together when you want to throw in the towel.
And last, but MOST importantly, add All the Jesus You Have, all day every day. All of it. Tip it over and smack the bottom of the box for every molecule of Jesus it’s got. Really pile it in on. Study his ways in the context given, and leave room for Holy Spirit in every dish.
Oh, and tell your friends that All the Jesus is just another measurement of LOVE. Get to know HIS way around the kitchen together.
These few ingredients are all you need, Junior Chef, to mix up a reconstruction of faith for the ages. And keep in mind:
If you feel like you have to keep Fear on hand “just in case,” know that God is not the store where you purchased Fear. That stuff is very in-organic.
If you’re grieving the losses of this hard life, pull up a chair and come sit by me. There is always plenty of room at Christ’s table. And mine. *Pulls out chair and pats the seat in a welcoming invitation.*
If you’re ambling around aimlesssly, your chef hat askew, join me. I’ll be celebrating that I finally understand, “It is for freedom you were set free.”
And if you’re deconstructing your faith, and If you’re being called “deceived,” “fallen” – or (and I’m okay with this one) – “ex-evangelical,” remind yourself that the Word of God is an actual person. As Master Chef, he wants to see you succeed.
Leonard Cohen’s “Hallelujah” used to be just a song to me. Beautiful lyrics, yes. Haunting melody, certainly. But until the past few years, the words were not a sucker punch to the gut, nor a comfort to the soul. Today they are both. (I’ve attached to this article the video by Jeff Buckley of the song, my favorite version.)
Right now, we are all thinking back to a time when things were simpler, even though we all bitched constantly about the way things were, as human nature dictates. It’s what we do.
In the Hebrew Bible hallelujah is actually a two-word phrase, not one word. … However, “hallelujah” means more than simply “praise Jah” or “praise Yah”, as the word hallel in Hebrew means a joyous praise in song, to boast in God. The second part, Yah, is a shortened form of YHWH, the name for the Creator.
I don’t identify as an “evangelical” Christian anymore. It was easy to be an evangelical when privilege was running the show. Before I got so sick. Before the world was literally shut down. Before I started questioning things.
I don’t for one second accept that the current state of affairs is God’s doing. Love – and only love – is his modus operandi.
You’d be surprised how much ire you draw professing that God is simply Love, Jesus is that manifestation, and practicing radical love can draw, proving that what many of us learned from “love” is how to shoot at someone who outdrew you because. But, love is not warring with a devil who is already defeated. It’s not giving him credit for things ego produces. It isn’t striving. It’s resting.
In a twisted way, my illness and pain brought me closer to Jesus. But not because he sent it to “test” my faith. And not because I accepted it as status quo, or any of the other ways Christendom tried to convince me I was a dirty rotten sinner and somehow brought it upon myself.
Yes, it broke me down. It is still breaking me down. but it isn’t breaking me. And it didn’t break my faith. “Broken” is okay.
I didn’t fall back in love with God until stopped expecting “proof” to come as a flash, a deliverance. Many Christians will elude to the fact that in order to be healed and whole, we must pray harder, fast harder, beg harder. But when you aren’t “changed in an instant,” it must be something you’re doing wrong, o ye of little faith!
But I think it takes BIG faith to “keep the faith.”
“Proof” of Jesus is sometimes just standing still, and still standing. Still loving. Still having joy underneath. I’m finding that it’s making life a constant prayer, having thousands of little conversations with God in my head and reminding myself that the same God listening intently to my ramblings and problems (first world and otherwise) is the same God who engineered the cosmos and created microcosm and macrocosm that we so marvel at. It’s telling him whats really going on below. Even when I’m struggling, my life is hallelujah.
Cold and broken, but full of hallelujah anyway.
It’s figuring out for yourself that belief in the unbelievable is the only thing that makes sense after all.
It’s walking away from pain with faith intact.
It’s a white flag on a battlefield that God is holding up for you because you’re too weak.
It’s a Creator who hunkers down with you under the crappiest circumstance because he isn’t afraid to get his robe dirty or get a little dirt under his fingernails on your behalf.
I don’t need a God who is waiting at the finish line for me, to take that victory march when everything is peachy keen again. I need him to struggle in the enmeshed, awkward, three-legged race with me. To fall with me, if necessary. Sometimes falls help me right myself again.
It’s a love that’s ever-present even if we’ve suffered loss so severe that our hearts beat against a constant heaviness. It’s there when we can’t compose ourselves; when we are threadbare with frustration. When nothing makes any sense and we are living in the upside-down.
It’s not somebody who’s seen the light.
It’s a cold and broken Hallelujah; a praise for spiritual commoners and baffled kings, received and welcomed by a God, who – in his infinite mercy – really digs it when we are authentic, even if we’re scared.
This whole post could easily be about hating summer. Because I really hate summer, and frankly don’t understand why any temperature over 90 degrees exists. That’s what I want to talk about today – hating summer because it’s hot.
In the literal heat of the moment, I can decide the whole damn season just sucks.
Heat is oppressive. My body doesn’t like it. Easily eighty percent of my health woes are directly impacted by temperature, although I hate admitting that because it’s such an old lady complaint. (Spoiler alert: You really CAN feel the storm coming in your bones!)
Something about sweating really brings out my flair for the dramatic. In the foyer of my house – as I am exiting my home – I am woman, hear me RAWR! And I can do ALL THINGS through Christ who strengthens me! I’m having a great hair day!
Two seconds later, I’m walking to the driveway awash in the oven-like conditions of the great outdoors (yes, the stretch between my front door and driveway IS considered the ‘great outdoors,’ especially in the summer.) Within moments, I have dissolved into a sweaty, ruddy, giant two year old who needs a nap. The air feels too damp to breathe. Ew.
When I get over-heated, all of the sudden, I feel fat and ugly.
All of the sudden, my inflammation levels rise.
All of the sudden, I hate everything about living on planet Earth.
Oh my goodness, what first world problems! But during the experience of segueing between Hearth and Home and Habitat Hell, I become extremely grumpy. What possible purpose could 100 degree weather serve? I mean, sorry about the Ozone, God, but could you hook a sister up with some nice 80 degree days between May and September?
To everything, turn turn turn,
Season, turn turn turn,
And a time for every purpose
The inevitable truth is that summer is only a season – one season – and as such, will turn into Fall. Things turn; it’s the nature of things to turn.
Now, I LOVE everything about Fall, ya’ll. The whole shebang!
Autumn leaves changing colors, and hot apple cider. Snuggly sweaters and crisp, cool air. October is my favorite color, and I can’t wait for it to come around! At the slightest whiff of cool air, my attitude changes. Witnessing the falling of one orange leaf means all of the bounty of my favorite season is in view. It’s coming! It really is!
That seasons change is a fact. Better times are coming. After this season comes another, better one. I will not need gills to breathe outside then. I will be able to exhale, and inhale again, with little to no drama about leaving the house.
So I suppose this whole post is kind of all about hating summer. But even this wretched season has it’s charms – like going to the beach. And….going to the beach. (I got nothin’ else here.)
No matter what we are hating right now – it will change. Seasons always do. Whatever is stifling us and strangling us, making us grumpy. Knowing that it’s nearly September and October inevitably follows is a great comfort to me right now!
If you are going through some awful season right now, I pray you will just be encouraged. I’m not going to feed you a line about everything happening for a reason; that’s not helpful at all. But I am reminding you that it is temporary.
It helps to remember that in all of the other seasons, too – the ones that make heat strokes look like a walk in the park. Like the Big Three – health, money, and relationships. There’s a season for everything, including huge life changes.
Take heart – your “October” is coming!
Mine is, too.
“There is a time for everything,
and a season for every activity under the heavens:
a time to be born and a time to die,
a time to plant and a time to uproot
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,