Hope Hunger

Hope is the thing with feathers
That perches in the soul
And sings the tune without words
And never stops–at all.
~Emily Dickinson

“Life sucks.” This from a friend whom I love more than my luggage. And yep: stuff happens. Read my blogs about ankylosing spondylitis and domestic violence. But the implication that we’re stuck in our muck gnaws at my grace-girl instincts.

“My daddy is my worst place in my life,” Eli says. A four-year-old struggles to wrap his one heart around shards of family glass scattered at feet once rooted in perceived safety. Even in its fragility, the glass castle his shadow-father made was still familiar. “Because my dad is always angry with me,” Eli explains. “He keeps messing me up.”

“Monster feet time,” I tell Eli as we prepare for shadow-father’s post-Christmas arrival. (My child resists hard. He dons furry, green slippers with soft, orange claws.)

Eli’s eyes, two dark-chocolate wells hugged by doll lashes, fill. His thin shoulders slump. He laments one home and two parents with the courage to repair. Whenever Eli revisits shadowland, he begs to remain home “for every sleep.” My boy lives between mother and father–between brought up and broken down–and when familiar fades, he clings to blue walls, fairy lights, a brown corduroy duvet, and a plastic wand that whooshes with the touch of a button.

His SPD in full bloom, Eli holds the wand’s base like a baseball bat–one hand above the other–and grips magic hard. The wand’s tip casts purple into his dark.

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photo: Harper Green

“Kill them,” Eli says about shadow-father and grandmother with whom father lives. He slides his fingers across the slick fabric of his black Batman cape as we discuss endings, beginnings, and angels who guard children in between. My heart cracks open wider as I hold my son’s raw in arthritic hands.

I cradle Eli’s new hurt in sacred silence before promising to leave his pillow kingdom as it is until he returns home: thirty-two pillows placed carefully atop a king-sized bed with room for three.

Eli ponders beige bedroom tile. He struggles to sustain eye contact with most everyone but me. “I’ll always forgive ya, Mommy,” he says softly before I ask. “We’re attached.”

Eli gingerly places the last throw pillow–red and green plaid with spots rubbed sheer–atop a throne he built just for me. Then he removes plaid and rubs its soft against broad forehead and delicate nose for one beat before tears kiss flushed cheeks, and we walk hand in hand to a blue hatchback parked at the curb because shadow-father can’t step onto my personal property after arrest warrant, smoke detectors dismantled in secret, and shattered glass.

My son suffers from hope hunger. Hope was the thing with feathers that perched in his soul and mine. Hope sang dreams in spite of, and it sang still together into sheets of glass. Hope didn’t stop until we did. Our hope flew into gray when our family broke. Its song stopped when we couldn’t reach forward–when our in spite of and still together faltered.

In the community college classes I teach, I quote Booker T. Washington ad nauseam:

The circumstances that surround a man’s life are unimportant. How that man responds to those circumstances is the ultimate determining factor between success and failure.
Character, not circumstances, makes the man. (Or woman, as the case may be.)
Nothing ever comes to one, that is worth having, except as a result of hard work.

I curl up inside what feel like solidly American notions about upward mobility and interior landscapes, about possibility and honest effort. Washington’s optimism washes me with a certainty that we can overcome. Integrity trumps hardship. Hard begets worthwhile. Washington’s focus isn’t our inevitable human struggle; it’s what we do about it and why.

My inner John Keating longs to whisper encouragement into fractured fairytales: Go on. Lean in. Listen. You hear it? Carpe… Hear it? Carpe… Carpe diem. I want to sing to son, to students, to you, to my own broken heart, Seize the day. Make your life extraordinary. We have ample time and plenty of chances. I promise: there’s a way out of every broken. You needn’t thirst for truth nor hunger for hope. Hold hope’s magic hard. An abundant life is within your grasp.

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image: mentalfloss.com

But what to say to a child living in between? Are big dreams worthwhile? Is anything possible?

Eli’s frame is slight; he’s all saucer eyes, gangly limbs, and bird bones like me at age four. We share ginger hair and dimpled chins. We’re contemplative, imaginative, creative, goofy. We laugh at ourselves. Fair skin and unfenced empathy mean we burn easily. We fret. Eli’s eyes aren’t green like mine. His sweet little nose is uniquely his own, but physically, from bowed legs to knobby knees, Eli is his mama’s child. He owns a darker hue of shadow-father’s brown eyes, but Eli will not become shadow-father; he’s not a narcissist or a bully. He’s not mean. I worry about the softer traits Eli inherited from me.

I’m a liar. This reality–framed kindly–pierced me when Eli’s play therapist, a bubbly brunette with a gift for patching child wounds, suggested that I rethink my responses to Eli’s broken. I didn’t know to hold his hurt in silence until Ruth taught me. Oh, but your father loves you, Eli. Your father makes bad choices like everyone else. The truth: your feelings are valid, son. Your father’s actions are not love. I’m sorry. You matter.

“Don’t try so hard to shelter Eli from hard truths,” Ruth said. Don’t gloss over his fear or sadness or righteous anger. Don’t suggest that any kind of abuse is any kind of love. Do hold son’s hand. Hear. Acknowledge.

So there are cakes and pillows and colors galore, but underneath this more obvious patchwork quilt are places like a quiet room where you can go and hold someone’s hand and not have to say anything. Give no story. Make no claim. Where you can live at the edge of your skin for as long as you wish. ” ~Alice Sebold, The Lovely Bones

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photo: Harper Green

As I navigate the ashes of divorce and domestic violence, I’m learning that there is a time to hold and a time to tell. Eli needs me to hold his truths so I don’t diminish them. He also needs safe spaces wherein his heart story can replenish his hope.

Stories are meaning-makers; stories have the capacity to heal because we use them to make sense of our otherwise nonsensical lives. Our shared histories mature until they become tangible truths. 

Each time I told my story, I lost a bit, the smallest drop of pain. It was that day that I knew I wanted to tell the story of my family. ~Alice Sebold, The Lovely Bones

In meaning-making moments, I teach Eli the Story with the power to restore broken. Jesus can clean our dirty, busted up family even if we live under two roofs. He’s in the hope business and does what this fallible mama can’t: fill life holes with hope eternal.

Problems persist: what to do about hope and dreams and possibility right now? On a practical level, how do I give a four-year-old hope when my own hope falters? There’s the challenge of what to do about our busted circumstances today. I know why: a ginger, Batman-loving old soul with a dimpled chin, a gentle heart, and a pillow kingdom that represents his familiar and a flickering trace of hope.

“My pillow kingdom is my home,” Eli says. “Every pillow is attached.” A pillow “fence” surrounds his kingdom, and he melts into madness if a single pillow falls, “breaks,” or “ruins.” His pillow kingdom breaks me.

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photo: Harper Green

Life blood drains “in a moment, in the twinkling of an eye” (I Cor. 15:52). We’re here for a blink, then vapor. At the moment, Eli views his life as a series of partings. For a season, his shadow-father pulled him from the only city, home, school, and church he’d known. As our legal journey ends, I’m left with the bone-hard task of piecing together what’s left. Awful things happened to Eli. His circumstances sucked, and they’re already shaping the man he’s becoming.

At age four, Eli resents father and clings to mother. One day, when he’s an adult who speaks for himself, he may, like me, walk away from family shadows that torment. The thought of a son growing up and away from a man who shares his DNA saddens me, but parents have only so long to solidify healthy, lasting relationships with their children. Kids are intuitive. They know what’s what.

I remind myself that none of us were knitted together in our mothers’ wombs with the purpose of being tethered to another human being. We’re spiritually hard-wired to leave earth’s nest and return to the Father who stays. He’s our Hope, and his hope is the grand, big-picture variety, but God’s hope well is also everyday inspiration. 

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photo: Harper Green

Hope is a pillow kingdom that affords mother and son opportunities to talk about our broken and to learn to solve problems as a team of two. Hope is a healthy attachment to a healthy mother whom Eli is learning to depend on when shadow-father clutches pride.

I can’t know for sure what damage occurs in Eli’s heart when he’s beyond my protection. I have an idea because he comes back from shadowland with new scars, and he leaves home anguished. I fret about my inability to protect my son from the strange dark. Then I remind Eli that God protects all of his children. Nothing can separate lost lamb from faithful Shepherd. We’re never beyond his protection. God does his best work in the dark.

God is the hope in Eli’s pillow kingdom. He’s the hope in Eli’s leaving and in his coming back. Grace words of fixed hope flow from book and pulpit into Eli’s hunger and mine. God’s hope is his word, and it’s Steel Magnolias, Booker T. Washington, Dead Poets Society, and The Lovely Bones. Hope resides wherever possibility births holy inspiration. Like love, hope thrives in the everyday details of our busted lives. Hope needs replenishing, but He waits for us in our broken places.

God uses our ordinary experiences to pour Hope into lives made extraordinary and abundant because they’re filled by Grace. God doesn’t promise earthly abundance; in fact, he guarantees the opposite: lives necessarily infused by shadow more than light. That’s because God’s presence is most easily evident in the unholy spaces that undo our peace. Perhaps it’s just easier to see hope when we need it so desperately. I don’t know, but I trust that Hope is within my grasp and yours. Always. Even when we fail to look.

Our days are fleeting. I may never get around to becoming an olympic figure skater. I might not publish my crazytown memoir or purchase a black-bottomed pool that is equal parts tranquil and terrifying. To seize the day–to really and truly grip time’s magic hard with two blessed hands–is to see Hope in our muck. The best days are the ones we sink into with intention; they’re a cup of joe with a friend, a game of tag with a giggly child.

To hope is not to overcome. To hope is to live and breathe with a divine purpose when we can’t overcome unholy, human circumstances beyond our control. Hope is carrying on in faith.

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To the friend whom I love more than Clairee loved Ouiser: circumstances suck. Life doesn’t. Life is a gift. Like Grace, our lives flow freely in spite of because of still together; because of purple, little-boy magic in the muck; and because of big, unstoppable dreams winged Hope affords every grace-seeker with a song to sing.

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photo: Emily Taylor Tirado

Yesterday Eli’s shadow-father delighted in the knowledge that he was taking our son out of state without my awareness. In this moment, I don’t know where my brave dreamer rests his weary head, but Hope still nestles right into my broken soul and Eli’s. I believe for two.

Love and light,
Harper

It’s not about you.

If I take the wings of the morning and dwell in the uttermost parts of the sea, even there your hand shall lead me, and your right hand shall hold me. If I say, “Surely the darkness shall cover me, and the light about me be night,” even the darkness is not dark to you; the night is bright as the day, for darkness is as light with you. For you formed my inward parts; you knitted me together in my mother’s womb (Psalm 139:9-13). 

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photo credit: Harper Green

Today I stand redeemed: by a legal system that held shadow-husband accountable for his dark and by a Judge and Father who covered Eli’s head and mine in our final day of battle.

Eli’s father held our family hostage in a divorce and custody war that spanned seven months. Prior to this week’s successful mediation, I was often asked how I overcame abandonment and abuse. How did I circumvent sorrow? The simple truth: I didn’t.

I didn’t warrior through unspeakable: child from mother, grief like quicksand, wounds that domestic violence casts upon families. I’m not a supermom, and I’m not immune to uncertainty’s grip on my heart. If you envisioned a woman warrior marching, allow my truth stripped bare to reveal my broken. I’m a scarred survivor, not a haloed victor.

Last week my four-year-old said I should kill myself. This after the bitch is back sung with innocent glee at our bathroom sink. This after months of liar, fat, lazy, stupid, loser, and crazy. After bad mom. Eli’s words tumbled out: a waterfall of language absorbed by little ears. My son has been singing “Jekyll and Hyde” by Five Finger Death Punch since age two.

I adore Ralphie’s Old Man in A Christmas Story. (No, really. One Christmas I hung a string of leg-lamp lights; they fell and burned a hole through my comforter.) But Eli’s words are clear. A child speaks ideas his mind can’t unravel, and I struggle to mitigate the damage.

Words wield power. When fueled by jagged emotions, words sink souls, or they whisper comfort. Rarely will a word fall in between to the ears of an impressionable listener. 

I can’t push through Eli’s burn or mine. I’m powerless over life’s stubborn pull. The morning after shadow-husband unveiled his plan to divide, the sun glowed golden. Warmth ascended into a cloudless, too-blue sky and expanded in the face of our calamity.

As I stood frozen, my only child snuggled into my tight embrace, light flowed into our broken. “Because horror on Earth is real and it is every day. It is like a flower or like the sun; it cannot be contained.” ~Alice Sebold, The Lovely Bones

Last weekend the horror was a family-sized bag of Lay’s potato chips. I explained to Eli that we didn’t need a family-sized bag. Before I could lasso them back, the words hovered heavy over my son’s broken, and he crumbled. His tears remained after I placed a smaller yellow bag into our race-car buggy, his favorite shopping cart since he was old enough to drive up front, groceries and amused mama in back. Hurt demands to be felt.

I’m recovering my voice, but some moments still undo me. I want to cry into a chip aisle: “If  you believe the way you say you do, oh then why am I unlovable to you?” (Plumb). Why father’s pride before son’s heart? Why broken? Then I taste the truth I learned from faithful women I won’t greet on this side of broken: it’s not about me

I met Sara Frankl when I stumbled upon her book, Choose Joy: Finding Life and Purpose When Life HurtsSara’s blog breathed hope into my AS battle; her words resurrected my joy. At age 38, Sara died of complications of ankylosing spondylitis. Her disease process was swifter and more acute than mine. At the peak of my AS (now in remission), my gray didn’t touch Sara’s black. I never experienced the allergy complications that rendered her unable to leave her Iowa condo. Sara was allergic to air when she journeyed Home.

Pre-remission, I struggled to plant popsicle sticks and pinwheels in Eli’s garden: a wooden and metallic wonderland rooted in a patch of green beneath a red oak my mother planted when he was born. The air inside our home was thick with oppression then. I couldn’t see that the dense was not my AS. In my abuse fog, I heard Sara Frankl’s words:

I don’t have a lot of distractions between me and God. I don’t have a hurried existence. I don’t have a job and husband and children and errands or just plain old life to distract me…I would like to have those things filling my world. But in this way, in this I-have-no-one-around-me-but-Jesus way, it has allowed me to have a connection to God I don’t know that I would otherwise have. It has become as natural for me to connect with Him as it is for me to blink my eyes (Choose Joy, 108-9).

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Before physical distance and bone-hard soul work untethered me from shadow-husband, I struggled to see God in the every day. I was like Ann Voskamp whose book, One Thousand Gifts, bent my heart towards thanksgiving: “I am a wandering Israelite who sees the flame in the sky above, the pillar, the smoke from the mountain, the earth open up and give way, and still I forget. I am beset by chronic soul amnesia. I empty of truth and need the refilling” (106).

Domestic violence is more menacing than forearm, neck, not love. Domestic violence can morph soul amnesia into a terminal condition. Abuse empties the walking wounded until we lose the truth of who God intends us to be. We need refilling. 

But then we’re all the walking wounded, aren’t we? All of us parched. Last week Angel, a soft-spoken, gentle mama from group, escaped her shadow-husband’s reach; she secured a secret, one-bedroom flat and fled with four babes while her abuser cradled drugs. One of my most humbling life experiences was discovering my father stocking groceries at Safeway at night because he wanted more than fried Spam for our red-dirt family. My strawberry-blonde, whimsical mother crocheted love into colorful, handmade clothes she crafted just for me. A child’s open heart sees.

I find myself looking at every moment and opportunity differently now. Life isn’t about what I am in the mood for or what can fit into my day. Life is about being open to what He may need from me…I am a survivor. Not because I am strong or willful or unique. I am a survivor because God has intentions for me…He saw that I would be sick. He saw that I would be devastated. He saw that I would feel weak–but He put me in this life because he also saw I would fulfill all He intended (Choose Joy, 148-9).

Sara Frankl’s illness, obedience, and perspective positioned her to see the face of Jesus: “All I have to do is remember that this life isn’t about me. It’s about His intentions for me” (149). Sara’s story defines community; it exposes Homegrown, infectious joy that won’t bow to circumstance. Gratitude birthed Sara’s joy. Intention set her course. 

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photo credit: Harper Green

Like Sara Frankl, Joey Feek reminds me to live life intentionally. In frantic, why me? moments when I gasp for grace, I hear Joey’s life song. I crank up the speakers in my Honda mom-mobile, and I inhale this mama, wife, and artist whose story–and whose tender relationship with her husband and musical partner, Rory Feek–softened me during my AS battle and during my legal war with shadow-husband’s Puppetmaster.

Joey’s cancer battle ended when she was 40. Her daughter, Indiana, had just turned two. Rory chronicled his wife’s journey, and he continues to document life with Indy on their Tennessee farm. Rory helped his love slip away. Together he and Joey celebrated still here. They grieved soon gone. Joy and agony, side by side. In his blog, Rory writes, “I show up. God does the rest.” Joey Feek’s bones rest beneath a handmade cross. She didn’t glimpse her girl grow into a woman. Rory still maintains that God gave his family “a great story.”

The greatest stories–the ones that lend breath to the heartsick and linger after their characters depart–are not the ones we write ourselves. These are the stuff of Grace.

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Joey Feek showed up in her own grace story. She showed up for her family and the community who held them. She understood that her life was not about her; Joey’s life was about the Author who gave her an intentional song and the voice to sing it in tune.

Before Plumb, Ann Voskamp, Sara Frankl, and Joey Feek, I clung to author and blogger, Kara Tippets. I listened to this mama’s grace story while anterior uveitis, close cousin of ankylosing spondylitis, rendered me unable to read. A fellow professor frequented my home and read my college students’ essays aloud. Kara’s audiobook anchored me in an eternal perspective at a time when my outlook was skewed by disease, pessimism, doubt, and their bold intrusions into the chaos of abuse that claimed my peace and Eli’s.

A world stood with Kara when her open letter to Brittany Maynard went viral. Like Sara Frankl, Kara passed away when she was 38. Following her cancer battle, she left behind a pastor husband, four children, and a community who learned from her how to “die well.”

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Kara didn’t want to leave her Colorado home, but she wasn’t afraid to return Home. She wrote, “When you come to the end of yourself, that’s when something else can begin.” What began for Kara Tippets was another “great story.” Like Joey Feek, she faced cancer with deep humility. She understood that her life, as precious as it was, wasn’t about her.

Cruel diseases and painful partings aren’t beautiful. If you’ve witnessed the shape of cancer, you know its ugly, formidable outline and its ability to wreck flesh and family and to steal hope. What Kara teaches is grace in suffering. Grace doesn’t come from within. Grace is a gift. It’s light washing over our weaknesses. It’s a strong, singular Voice in the bitter wilderness.

The voice of the Lord is over the waters
The voice of the Lord breaks the cedars
The voice of the Lord flashes forth flames of fire
The voice of the Lord shakes the wilderness

I am not Sara Frankl, Joey Feek, or Kara Tippets. I’m not Plumb or Ann Voskamp. But I am broken. I know my way through my familiar friend, sorrow, and these women are the giants whose voices encouraged me to persevere. If I rose above my circumstances at all, I did so on their shoulders and due to their collective reminder: it’s not about me

Even shadow-husband’s abuse is not about me. It’s not about him either. It’s about Him who walks with us in the worst of our worst. As I sat in mediation, our son’s future dangling in a fickle legal wind, I was unmoved, but not because I was courageous or brave.

Peace poured in from everywhere: from my pastor who prayed before mediator and attorneys danced; from texts, phone calls, emails, and social media posts from loved ones as well as strangers possessing mere snapshots of my family’s breaking; and from promises that held my broken.

Steadfast love surrounds the one who trusts in the Lord
He heals the brokenhearted and binds up their wounds 

My shadow-husband and I sat in separate rooms. A tough-as-nails female mediator navigated two spaces, two attorneys, and two polar opposite ways of raising a child and being in the world. I recognized this woman’s heart before she spoke. I donned a plaid Christmas scarf, a black peacoat, and leather shoes, appearing normal but feeling other–like a meandering spirit floating in wait. The mediator glimpsed my open Bible, neatly-bound documentation, and letters of support from my community. She held my mama’s gaze. She listened. Heard.

Then this spitfire of a mediator spent the bulk of her time with shadow-husband. While I sat still, an extraordinary, holy war unfolded in an ordinary meeting room complete with uncomfortable office chairs, fluorescent lighting, and a centerpiece of green grapes and oatmeal cookies. Earth. Eternity. Justice and Grace unleashed by a Voice who shakes lose the evil that binds his wilderness wanderers.

Mother redeemed. Son returned. New dawn and old, unfailing Love. Peace

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So here I am, friends: a renegade mama blogger who writes about uncovering the you in yourself, and I’m saying it’s not about you or me. This life is about service. Lives lived without community and willing brokenness are lived without intention. Without grace. Your broken is real, but it is not unique. We’re all broken: all of us aching to be held.

My challenge to you, the walking wounded–to my community of broken: be the holder as much as the held. Where earthly pains reside, eternal opportunities flourish. Your broken is an opportunity to be held by the One who reframes and restores every heartache. Your neighbor’s broken is an opportunity to hold a heart in the stead of Christ.

Walk into the eye of a neighbor’s “unspoken broken“–carry her hurt for one tender beat–and you will see the face of Jesus. You’ll feel and fulfill pierced hands and feet and sacred intention’s reliable pulse. You’ll be joy in sorrow, rest in unease, and hope in despair.

I didn’t overcome shadowland and abuse. I rested in words that whispered comfort into my wounds. And yeah: I wallowed. I got angry, and I got real about my broken. But by God’s grace, I didn’t get bitter or even. I never gave up. Instead, I fell to my knees and gave up my struggle to the Maker who knitted Eli together in my womb. I replayed the grace words of survivors stronger than me. I woke one morning and realized that the whole of this blog is a letter to my child. My “Letters to Eli” aren’t birthday letters, cards, or construction-paper hearts.

My “great letter” to my son is my life, and this blessed life is not about me. 

Although his family broke wide open and apart, and that brand of breaking leaves scars, I pray Eli grows to embrace my life’s verse, which I quoted at the start of this blog. Tonight the same pastor who prayed righteousness into my mediation explained the Psalm 139 passage this way:

There is no hour of joy or despair in which we are removed from the knowledge of God…These words are the words of one who has been made acutely aware that he is neither independent nor self-sufficient. Rather he is fully the work of God who holds his life at all times. For the poor in spirit, the humble in heart, the scared, the lonely, the broken, these are words of hope and joy. For the prideful and conceited, these are maddening words because they deny independence to the Old Adam (Rev. Kurt Ulmer).

Words of hope and joy. My job as Eli’s mother is to flood him with words of hope and joy–much like the words my old-soul son has shared since he began talking.

There are so many things we have
You’re the one who stays with me

I’ll be the friend you never lose
I surrender to the sky
You show me Jesus
You’re gravity
God hears us

Recently Eli rose before dawn. He stood on our back porch, faced his red oak, and summoned winter warmth. “Rise up, oh glorious light-catcher!” he said. And rise up the sun did. Just like that. With a broken, intuitive heart, my boy flies freely on mornings’ wings.

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photo credit: Harper Green

Eli, like all of the broken-hearted, carries scars in corners he may never reveal, but in the crux of who he was knitted to be, I already see that the dark is not dark to my greatest earthly gift, my son. Eli holds every moment, and every person, in awe, and somehow, in some otherworldly, not-about-him way, my boy seems to view life as this open, wondrous opportunity to give.

Our lives simply aren’t about us. If we live intentionally, our lives are about what we can do for our hurting brothers and sisters, and sometimes the kindest thing a soul can do is call upon the Light. We “overcome” when our voices sing Truth in harmony.

Love and light,
Harper

Half Life

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This is the face of Ankylosing Spondylitis before Grace swept my crooked spine, and spontaneous remission shifted my perspective about the disease, pessimism, and the impact of both upon my life.

Before remission, I lived a half life. My life with active AS was “less than.” I was less than. Pessimism replaced an innate, God-breathed optimism, and I was less of a teacher and writer; less of a daughter, sister, and partner; and worse, less of a mother to a brown-eyed boy who was certain I crafted the moon by hand. Just for him.

My March 2015 diagnosis followed a traumatic, high-risk pregnancy and a more traumatic, high-risk marriage. A perfect storm of traumas triggered the genetic autoimmune disease and a life divided into Before AS and After AS.

Even in its infancy, After AS was denser and more disparate than anything light and whole that precipitated it. I was half as capable, half as lovable, and half as complete as Before-AS me.

True: I lived in excruciating physical pain. I battled chronic fatigue and fickle vision. To move was to navigate quicksand with bags of concrete strapped to swollen limbs. My eyes, once green with silver halos, flamed furious in too-bright sunlight. Anterior Uveitis, close cousin of Ankylosing Spondylitis, veiled my world in frosted glass.

After AS was heavy, nonsensical, and steeped in shadow. After AS broke my body and nearly broke my spirit. The disease loomed and stung without apology. It screamed chaos into the hollow of my defeat.

I gave myself a pep talk before crawling out of a bed left unmade. I chose between a hot shower to loosen stubborn joints and a loaded dishwasher because I calculated the energy necessary for blueberry waffles, a clothed toddler, and our drive to daycare. Then the harder work began: earning a living while my disease flared. I was the breadwinner. A diagnosis didn’t change the expectation that I would provide.

Whenever my After-AS body slowed my progress, my spirit cried out and asked a question that never serves me well: why me? I watched a mother jog behind a red stroller, and I wallowed. Unable to reconcile a life lived at warp speed with my new broken, I prayed for grief to roll away.

What I couldn’t fathom standing in the center of my shattered, After-AS rubble was that gifts like angels’ wings still drifted down from an open sky. In the bleakest season of my disease when I thought AS reigned supreme, Grace was as much my reality as pain, fatigue, and their wicked dance.

I couldn’t see then that God was still faithful; he wove into my fractured narrative glimpses of pain- and fatigue-free, Before-AS me. I breathed and did. I was slow and tentative, but I was enough: more precious than gold and Skittles to a loving God and a child whose greatest need, love, was met in plenty. In the worst of my worst, my best was good enough for my son.

One morning my best consisted of dry Cheerios because, in a pain-induced “brain fog,” I forgot to buy milk the day before. My son didn’t lament his organic, overpriced milk. He cared about love blown into backyard bubbles the same evening. We chased those bubbles until a gold sun dipped into pink and indigo. “Amazing!” he exclaimed. “So amazing!” Playing with my child of wonder when my bones howled was amazing.

Today I realize that my tendency to divide my life into halves, into before and after illness without acknowledgment of the reprieves Grace bestows, is symptomatic of post-diagnosis pessimism. AS, known for its rudely unannounced twists and turns, morphs the most optimistic among us into pessimists.

And frankly it’s hard to shuck fear: fear of the unknown, fear of failure, and fear of what new pain might riddle my body next. Pessimism and fear crave the deep dark; they work in tandem to extinguish light and smother hope.

I will never shuck fear for good. I’m optimistic about the likelihood of remaining in remission, but I catch myself fearing the future. I catch myself being human. Post remission, I cope with fear as I tried to cope in the thick of my AS symptoms: by recovering Grace moments that hold me.

I revisit a portrait of my ginger son planting popsicle sticks in our garden. (Convinced that the sun’s gaze grew anything, he intended to plant pianos next.) I recall blue-green waves crashing against an Irish coastline that lulled me when I was younger. I memorize the precise shapes of these moments, and the experiences become my heart’s touchstones: reminders of a whole life defined by Grace rather than fracture.

Ankylosing Spondylitis broke my body, and God used the fractured pieces to restore me. Always merciful, he started my spirit upon a path of peaceful abandon.

Today I chase brokenness.

I accept that Grace moments lie behind and in front of me. I can’t generate a state of grace, but I can rest in the certainty that God shows up in broken places. Maybe my remission will be permanent. Maybe it won’t, and that’s okay because suffering and joy can co-exist.

Brokenness is an opportunity to be held.

My way of coping may seem “Pollyanna-ish.” Because really. Are any of us promised a glittery string of days or even a dimly lit tomorrow? I’m also a realist. In my season of revitalized health, I don’t need a cane. I pray the same truth holds tomorrow, but until recently, pessimism insisted that I lug around that blasted cane in the trunk of my car. (I rarely needed the cane to begin with.)

My choice to view my life and circumstances on a continuum, with Grace as much a constant as pain, fatigue, pessimism, or fear, may seem naïve and simplistic—especially on days when worry crushes optimism, and I must untangle myself from why me? thinking.

Trust me. There is nothing simple about believing that life before AS, After AS, and even after remission is not less than. There is nothing easy about reframing a distorted, fractured life with chronic illness into a true, whole life wherein Grace floats down no matter what.

I’m committed to the daily surrender necessary to press forward into Grace, into holy, moment-by-moment reprieves from my disease’s unruliness and the pessimism it fosters. Today I lean into truths that I couldn’t embrace fully until my vision “spontaneously” cleared.

AS shapes me, but it doesn’t define me. Fractures are redeemable. Grace restores what is broken.

The most chronic, insidious illness of all is not a medical condition, but a spiritual condition: a life lived half empty and without eternal worth. Untamed pessimism is more menacing than inflammatory arthritis.

I am still the face of Ankylosing Spondylitis, but Before AS and After AS no longer reside in my way of thinking.

Today there is only me, and I’m enough. Life with AS is still life. It hums.

Author’s note:

A previous draft of this account, titled “My Fractured AS Life,” painted a harsher portrait of my early AS stages. My physical limitations were less severe than the working draft suggested. I couldn’t see how well I was doing in spite of (versus how poorly I was doing because of) until my pessimism cloud lifted, and a little distance and a lot of Grace revealed the abundance of good in the bad. Onward! HG