When I was diagnosed with ankylosing spondylitis (AS), I felt like my life was 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 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 reality, I prayed for my grief to roll away.
But 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. Glimpses of the Before AS me (pain- and fatigue-free) were woven into my narrative. I breathed and did. I was slow and tentative, but I was enough: more precious than gold and Skittles to 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, had morphed the optimist in me into a pessimist.
And frankly it’s hard to shuck fear: fear of the unknown, 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 my current remission, but I catch myself fearing the future. I catch myself being human. 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 life defined by Grace rather than AS.
I accept that Grace moments lie behind and in front of me. Maybe my current remission will be permanent. Maybe it won’t, and that’s OK because struggle and joy can co-exist.
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.
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 in me. AS shapes me, but it doesn’t define me.
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.
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