Today I am … hold on, counting on my fingers … ELEVEN days post surgery. My sixth one in a decade, 2009 was my first.
I declare it, Friends, I’m done.
Been thinking about pain. And meaning. And this quote from Stonehearst Asylum, “Misery has a way of clarifying one’s convictions.”
Yeah, it does.
On more than one occasion, I’ve used the phrase ‘bullet-hurtle’ to describe a me-of-then that the me-of-now, the me-of-slow-burn can’t even recognize. The pain had been gradual in its build yet it’s a fulcrum in my mind.
There is me pre-pain and me post-pain.
My daily-dos were always miles long and my pace was stomp be it in motorcycle boots or high heels. I was set on swallowing the moon, was bound to experience everything. Busy was for sissies and I come by it natural. My big bro’s tag line on Facebook, “I'm always on the go; you probably couldn't keep up.” It’s the hummingbird-energizer-bunny-Shively-Radford-family trait.
And then one day there was a pain, in my ass. This is legit, Friends, and how it started. It was annoying, but not debilitating and certainly generated no governor. I was young, it would pass. It prompted a doctor appointment that became doctorsss appointmentsss. Then it straddled years. It was escalating, restricting and incessant. Still, I knew of one way to deal with my life. I was the hare.
We know how that ends.
By the time I agreed to leave my job to focus on my health, I’d had career successes, awesome adventures, four surgeries, two babies, a miscarriage, and the million dollar mark up. At this point, about eight years into my pain journey, I’d also had tens and tens of injections, a dozen rounds of physical therapy, medications galore, tests and procedures and blood draws ruling out all the things. But the doctor had said it, rolling off his tongue the way ‘easy peasy’ does. “That’s a thing?” I asked. “That’s a thing,” he said. I could have, should have, deduced as much, paying out of pocket in medical bills enough to buy my house outright already. Or a few cars, fancy ones. More than a few vacations.
Or just trying to figure what was wrong, trying to live with the monster that is pain.
Not for one second to diminish the reasons for the stunning rebuke and incredible testimony by Jon Stewart last week, (yes, Friends, you have nine uninterrupted minutes) but his statement, “Setting aside that no American in this country should face financial ruin because of a health issue…” is one that has kept us up nights. Two floods in two years have not done anything to help either.
We don’t take vacations.
Alas, I’m going on fifteen years of this journey. After fifteen years, what has my pain taught me?
That life can suck.
That when the country boy, whose homestead’s just a twenty minute stones-throw from the house I grew up in, gave us ‘hurts so good,’ he was explaining the phenomenon that pain on top of pain, can actually sometimes soothe the pain. No he wasn’t, but he gave me the words to describe how my wincing with Joe’s massages wasn’t a bad thing. Thank you John.
Also, life can suck. Oh right, I said that. Whoever told us to make lemonade from lemons probably just stubbed their toe. Actually it was Julius Rosenwald, a pretty interesting guy who did a lot of good. However, “an enduring penchant for sarcasm helps with pain,” said me.
That my husband is my gravity and universe. He’s amazing and and creative and inventive AND attentive and patient and spontaneous and funny and affable and concerned and a fighter. He is my Elevation, “Love, lift me up out of these blues. Won't you tell me something true. I believe in you.”
That twenty years ago I hated my weight. Eye Roll. That at almost FOURTY, I still hate my weight, especially after feeling stagnant and slow and [cough] gaining 35 pounds. But you know what, looking back on those twenty years ago … I looked damn good. Let that be a lesson to my almost 40-year-old self. Enough already.
That what matters the most will always rise to the surface, like when your babies want you to put them to bed even though it hurts too much to hold them or walk or sit or lay beside them. And you do it, because it is what matters most.
That not putting your babies to bed is okay and not selfish. Even when they really, really want you to. And cry.
That Theophrastus was brilliant. I say pain illuminates passions. And passions inform our purpose. Therefore, pain is purpose. Ok, that might not exactly fit his modus ponens, but I see the logic.
It’s my real.
That cussing is good for your health, backed by science. Fucking A! You might have to close your ears for some of this post.
That some folks will not get it. The pain part. The isolation part. The depression part.
That there is not enough blank space here to talk about all that pain has taught me. I’ll have to write a book.
That pain is often pause. Pain can be pulling away. It is not a secret that I take frequent seventh-inning stretches away from social media. Pain noise is demanding. And only so much noise can I handle and “I have to make oxygen choices.” All the sound stations blare and blast. I can’t keep up with all the waves — radio, cyber, the-too-much-too-busy-game folks are playing with no commercial breaks. The gauge of my state of self has always been — if I can sing along, I know I’m ok. This theme is real for me, has been for always. The only way to hear myself, to keep that GPS pulse on myself, is to find a lower, slower frequency. I know that makes me MO. I’ve recently read how we should be less FOMO and more JOMO. Friends, I’ve been there a long time.
That my friends are my family and the wind beneath my wings and other gushy stuff. They call me on my bullshit. They keep me sane. I couldn’t do this life-thing without them. Nor would I want to.
That parents never stop parenting. That when pain is paramount, I still want my mommy.
That I can never, ever THANK my family, Joe’s family enough for everything they have done over the years to help.
That ‘beautiful pain’ is not an oxymoron. I’ve used it to describe my pain over the years and it is a truly fucking beautiful thing. Pain, misery, does clarify. It causes the nonessential to slough off. You know, the stuff you leave behind when the zombies attack and you have to get on the move, like NOW. I have learned most things, in fact, are nonessential.
That survival mode is a thing. And can last a long time.
That not all pain patients are pill seekers.
That for the folks who endure chronic pain and are now impacted by the opioid crisis and struggle to get and keep their needed prescriptions that keep them functioning and off the disability they would probably be rejected for anyway — my heart sincerely breaks for you, with you.
That not all pain patients make up a high number on the pain scale. We don’t think jacking up the number makes you believe us. Some of us live with high pain and it’s killing us.
That far more doctors than I would have predicted, and I’ve seen over 30, approach pain patients with bias and dismissal. That it is tiresome to have to convince and not just explain what is going on. It is also why I enjoy being a Standardized Patient from time to time, joining in on that dialogue.
That even though I’m not a doctor and wikipedia does not a medical degree provide, I am still the best resource for what is happening within my body and mind because I know something isn’t right, this is not in my head, and I must trust myself and be my own ruthless patient advocate. To the point of sheer annoyance.
I have been annoying.
To the recent example that because of my insistence over these last five months, they discovered one of my fusion screws had displaced into my spinal canal causing tremendous and debilitating pain. My insurance had even denied the recent round of tests, the ones that reveled the source, due to not being medically necessary, two curiously fun words. Hours on the phone to insurance, by myself and my doctor and their nurses, God Bless Them All, and three insurance peer reviews and one reschedule later, the tests — a CT Scan and Mylegram with contrast injection — were performed and instantly lit up like an airplane runway what was happening. The X-ray and MRI preceeding those tests had made them consider it not medically necessary. However, if you live with metal in your body, you would know it creates a black hole on imagining, called an affect. They could not ‘see’ the area they needed. On one hand, we (me and insurance) could have saved lots of money and headache and pain and time if they had just done those tests five months prior when I was telling my doctor was what happening, but that would have been excessive and too much too soon. A sledge hammer instead of a needle. I’m fifteen years in though, this was not my first rodeo. I was lectured we must start conservative in treatment and progress from there. And they would not have been necessarily wrong. 20-20 can make us too confident.
“Honestly, it’s complicated and everyone has an opinion,” said Life and Everything Ever.
That pain and the processes that are meant to source and relieve and help are tricky to navigate and confusing and frustrating and infuriating and all the -ings. It doesn’t get easier the longer it goes. You just get more resolve. The noise of folks who think they know better about your situation becomes easier to tune out. Their “wellidajusthaves” carry little weight. They aren’t living in my body with me. Gut-intuition is also a thing.
Lots of things here today.
That it can take everything in your soul to keep going on this earth, when you’ve heard for the tenth, the twentieth time, “I can’t do anything else for you, I don’t know what is wrong. I’m going to recommend you to XX.”
That friends and family are loving and awesome and so very well intentioned but are also not doctors (except you Uncle Gerald <3 and all my amazing and fabulous aunts and cousins who are nurses!). Am I leaving anyone out? Me: "Well I've been to twenty-six doctors, four orthopedic surgeons, I'm now on my third rheumatologist, countless other-ologists, pretty smart folk I hear, as well a psychologist, psychiatrist, acupuncturist, and chiropractor, but your suggestion just now of more D3, could be the thing!" OF COURSE I would never say that. I would end up saying something like, "Thanks so much for your thoughts and concern. I'll really have to consider planking."
Because let's face it, they were trying to be supportive and support means everything. It is the difference between life and death.
This cannot be stressed enough.
That my twenty-year-ago-self, the one who looked damn good, would have laughed now-me out of the room if I told then-me, this is getting complicated, that meditation and breathing exercises and quiet (the inner kind, not just silently sitting on the couch scrolling news feeds) would become my staples of life support.
That when the doctor said not to have children, maybe, perhaps, we should have listened. But, come on, can you picture a world without an Elliot or a Sam. I sure can’t. “Only the young can say, They're free to fly away, Sharing the same desires, Burning like wildfire.” Annie, I’ll never forget your sharing your win of front row. Elvis forever.
That motorcycles still make my heart race and conjure the fragrance of jasmine and honeysuckle and winding roads and biker waves and dreams of his and her bikes, not matching, of course.
That I know what it’s like to want to die.
To have a plan.
That mantras and Can-Do-Life notes are essential. That you cannot have too many. That you could fill a tree. I have.
That self-care and self-grace are not selfish words or a trend needing a gut check. I am my best self for my children and my Joe because of self-care. It took me Y-E-A-R-S to get that through my thick skull. I am alive because of self-care. I am able to pay it forward because of self-care. Self-care is enabling and life sustaining.
That therapy is a necessity and Mental Wellness should be a mandatory course (not just a chapter in Health class) same as a Physical Education all the way from from Kindergarten through 12th-Grade or you don’t graduate. Full Stop.
That Mental Wellness and Physical Health are not able to be separated. Your mind and thoughts and feelings impacts your physiological state and your body impacts your mind and thoughts and feelings. Also Full Stop.
That God is big enough and well, God Enough, to handle when I was angry at Him for a very long time because of the pain.
We’re cool now. It took awhile.
That my pain was not a direct result of some sin in my life. Love still wins and that is not why I have pain.
That until my fusion of 2016, I was still living off other’s approval. Also a thing, more things, and one that gobs of us struggle with. I couldn’t see or feel my worth unless it came from the outside. Career moves and pay raises, accolades and all their expectations of me. During that particular healing journey, I had my come to Jesus moment and realized Curly’s one thing and that “everything else don’t mean shit.” (City Slickers fans?) So I finished my book about facing fears and self-published. It’s something I had to do. The first fear-fish I had to face. It’s the seal that had to break.
Now I fish with better bait. Watch out World.
That there was a time I was on the trajectory to not make the time. That too many things would fall into the put-off-till-Someday trap. Now I make the time. I cherish the time. I do it because of Homer and Achilles and David Benioff the screenwriter, who came up with, “The gods envy us. They envy us because we’re mortal, because any moment may be our last. Everything is more beautiful because we’re doomed. You will never be lovelier than you are now. We will never be here again.” I do it because I believe them.
You should too.
That pain makes the wishy-washyness of things go away. That getting to the point, whatever the point, is an asset. It saves time, conserves needed energy. I respect it, encourage it, value it. I don’t have the mental ram for petty. I barely have the mental ram for required. Be explicit. Make the decision. Does the body good.
So does milk.
I mean, has that changed? I know we go back and forth on eggs so…
That my capacity for compassion and empathy has grown like my front Azalea bed weeds and is ever expansive after living with complicated pain for so long. In all of us, for the sake of all of us, they are muscles that can be nurtured to get stronger and we must build them up.
That whilst your ‘Whatever Awareness’ Days or Weeks or Months are vital and important to you, they will likely fall on deaf ears and unmoved hearts until folks become personally affected or by knowing someone intimately who has been impacted. ‘Tis a human thing. It’s also why we must continue to raise our voices in our awarenesses. Whatever yours might be.
Mine is Chronic Pain and Mental Wellness.
That pain can make me question if I am a good parent. For a million reasons. That I’m pretty sure I’d be wondering that anyway. Today I live by good enough however, there was a time, you know, when I did all the things all the time. Elliot’s first birthday cake took ten hours to make. And good enough is good enough. I might not be able to take them to every state’s national forests, but I can walk with them the around The Green and teach them about insects and plants and trees and the connectedness of all things.
And I am a good parent.
Finally for now, but not lastly nor leastly — That life and death are both celebrations. That my funeral plans do not include an open casket or somber verses. Do not come to save me. Do not try to save yourselves. Fangirling, I’ll be sitting between Emily and Virginia, you probably won’t be able to see us, and celebrating in the gusto of Whitman’s jubilant Song of Joys. And dancing madly to Shiny Happy People on repeat. So gather, eat some good grub, deck some shit out in yellow and orange, release some butterflies, and have a good time. But you might be waiting awhile. I told my kids I’m living till 103.
Song of Joys is some 30+ stanzas. Here’s the final three, enjoy:
“For not life's joys alone I sing, repeating—the joy of death!
The beautiful touch of Death, soothing and benumbing a few
moments, for reasons,
Myself discharging my excrementitious body to be burn'd, or
render'd to powder, or buried,
My real body doubtless left to me for other spheres,
My voided body nothing more to me, returning to the purifications,
further offices, eternal uses of the earth.
O to attract by more than attraction!
How it is I know not—yet behold! the something which obeys
none of the rest,
It is offensive, never defensive—yet how magnetic it draws.
O to struggle against great odds, to meet enemies undaunted!
To be entirely alone with them, to find how much one can stand!
To look strife, torture, prison, popular odium, face to face!
To mount the scaffold, to advance to the muzzles of guns with perfect nonchalance!
To be indeed a God!
O to sail to sea in a ship!
To leave this steady unendurable land,
To leave the tiresome sameness of the streets, the sidewalks and
To leave you O you solid motionless land, and entering a ship,
To sail and sail and sail!
O to have life henceforth a poem of new joys!
To dance, clap hands, exult, shout, skip, leap, roll on, float on!
To be a sailor of the world bound for all ports,
A ship itself, (see indeed these sails I spread to the sun and air,)
A swift and swelling ship full of rich words, full of joys.”