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.
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