The Chains That Bind Us

July 23, 2022 – Part 1: Regarding Fear

Yesterday, Arin and I spent an hour-and-a-half hiking up and down the grassy knolls of our new property and exploring the winding ravines that snake through the bottom of what I’ve secretly labeled “the scary forest.” 

Right off, we saw a coyote big enough to be a wolf trotting off into the scary forest, thus confirming my belief that that’s where all the limb-tearing creatures abide. And just last Saturday, a motherless baby bear emerged from down there after I’d spent an hour sitting on my porch in the pre-dawn darkness, listening to the deep and gravelly grunts of what I (later) understood to be her mama. Not only that, but a few days ago, Arin discovered a deer skull and hollowed-out carcass atop a rocky ledge—most likely the handiwork of a perching lion. 

All-in-all, I’d say the scary forest is not on my top ten list of places I’m dying to explore.

Later that afternoon, Arin and I took Grayson and Arin’s mom to the Royal Gorge Bridge, where I tapped out on Grayson-duty and relinquished his crossing-the-highest-suspension-bridge-in-the-country caretaking to Arin. (High places and I don’t mix well, and Grayson completely tips the scale). Instead, I focused on remembering to breathe while coercing myself across the gently heaving bridge that dangled from strands of measly steel cables. I held on to my mother-in-law’s skinny arm for dear life, wholly forgetting that it was I who was supposed to be supporting her. 

Afterward, Arin spontaneously opted for a detour up Skyline Drive, a narrow, one-lane road flanked by steep drop-offs on either side that more than adequately lived up to its name. Curling the brim of my baseball cap tightly around my eyes, I turned all my attention to the Wordle of the day, squeezing my cell phone like a rubber stress ball. 

By the time I got home, I was exhausted and flat-out discouraged by how much of my day was spent feeling anywhere from mildly anxious to outright panicked.

I never used to be such a scaredy-cat; rather, quite the contrary. I was the fresh-faced, twenty-three-year-old mom sitting relaxedly on a bench at the Tampa zoo as my eighteen-month-old son climbed up and over the jungle gym—alone and unassisted. Older mothers with pinched and worried faces hurried over, “just to make sure I knew where my baby was and what he was doing.” Their concern always confused me—how else would my son learn his limitations and capabilities if I didn’t give him the space to try? Back in those days, I rode roller coasters with reckless abandon, went for midnight swims in the ocean, and took solo late-night flights into Detroit to watch my sister play volleyball—and never once did I think of being afraid.

But then Grayson, our Autistic son, came along and taught me—over and over again—the meaning of fear. He was the child I swore would never live to see Kindergarten. When enraged (which was often), he would suddenly dart into five lanes of oncoming traffic, open his door and attempt to leap from our moving car, or shimmy over our second-story railing and threaten to jump—and all before the age of five. 

Therefore, after living years and years in a steady state of flight-or-fight, I, the mother who was once young and cool-as-a-cucumber, can barely remember what it’s like to feel the absence of fear.

Somewhere along the way, as one catastrophe piled on another, something inside of me began to shrink and shrivel, and my ordinarily expansive soul-space grew tight and gnarled as an atrophied muscle. I started perceiving once trusted civil servants—like teachers, doctors, and police officers—as enemies, and the world—previously open and inviting—turned dark and threatening as the scary forest. It was then that I started feeling afraid. All the time. 

I nearly jumped out of my skin when I once snapped a pencil underfoot in the dark. Little boys riding bikes down the street made my heart race as I frantically searched my memory, only to recall that Grayson was in school. And the sound of my cell phone ringing turned my throat dry as the Sahara desert. 

This compilation of fears—accompanied by the new sensations from the day prior—caused me to linger in bed when awakened by a bright white moon at 4:00 a.m. this morning. Normally excited for the start of a new day, my feet typically hit the floor and head straight to the coffeepot the second my eyes flutter open. But today, I heaved a weary sigh and pulled the covers back over my head to block out the streaming moonlight and avoid another day with myself. 

I felt tired of being afraid, sick of battling my fears day in and day out; I just wanted them gone. I imagined ripping them from my chest like Jim Carrey in Dumb and Dumber, then hurling them over the edge of the Royal Gorge Bridge where they could never bother me again.

 I’ve experienced enough crises to know that trauma can get “stuck” in your body, which is part of the reason I wanted to move. I needed at least eighty acres to bleed out all the chaos from our past—the police restraints and hospitalizations, our oldest son’s rollover car accident, the disgusted glares from strangers at the grocery store, the nightmares of Grayson falling and falling through layers of black space…

But today, there doesn’t seem to be a mountain big enough to handle all my fears, and I worry they’ll remain trapped inside me forever. I lay there under the covers in moonlit darkness for a long time; then, finally roused myself and started writing: Yesterday, Arin and I spent an hour-and-a-half hiking…

Just the day prior, my sister, Dani, had texted me a page from Susan McCain’s new book, Bittersweet: How Sorrow and Longing Make Us Whole, and something about it had struck me, although I couldn’t put my finger on it then. So I went back this morning and reread, “I believe he’s telling us, It’s enough to be aware of it, and to feel its sting. Because this, in the end, is what connects us all…By turning his experience into poetry, Issa invites us to the shared story of being mortal, the communal longing of being human; he guides us to the love that I’ve always felt to be the unseen power source of all those sad songs with which we’ve inexplicably filled our playlists. This is the ultimate paradox: We transcend grief (or fear, in my case) only when we realize that we’re connected with all the other humans who can’t transcend grief because they will always say, because we will always say: But even so, but even so.” 

I realized that as much as I want to rip the fear from my chest and chuck it over a bridge, it is this fear that keeps me connected to others; for it is our pain, our suffering, and our lack of control “that guides me back to the love that is the unseen power source of all…”

Regardless of how desperately I long to rid myself of my fears, at the end of the day, I must value them for the gift they truly are. They are the thorn in my flesh that leads toward compassion and away from pride; they’re the link that binds me to my fellow co-laborers in life, and they’re the constant weakness that remind me to depend more fully on Christ, the ultimate and most pure source of strength. 

Perhaps one day, my fears will magically evaporate, and I’ll find that I can breeze effortlessly across the Royal Gorge without a second thought. Or maybe, and probably more realistically, I’ll continue battling, struggling, reminding myself to breathe, and occasionally pulling the covers back over my head to find some relief.

But even so, even so…

May our struggles be blessed.

Skyline Drive

On The Need to Feel Normal When Nothing is Normal

An excerpt from I Know Why the Caged Bird Sings by Maya Angelou and an essay on special needs parenting:

“In our society, where two-legged, two-armed strong Black men were able at best to eke out only the necessities of life, Uncle Willie, with his starched shirts, shined shoes and shelves full of food, was the whipping boy and butt of jokes of the underemployed and underpaid. Fate not only disabled him but laid a double-tiered barrier in his path. He was also proud and sensitive. Therefore he couldn’t pretend that he wasn’t crippled, nor could he deceive himself that people were not repelled by his defect. Only once in all the years of trying not to watch him, I saw him pretend to himself and others that he wasn’t lame.
Coming home from school one day, I saw a dark car in our front yard. I rushed in to find a strange man and woman (Uncle Willie said later they were schoolteachers from Little Rock) drinking Dr Pepper in the cool of the Store. I sensed a wrongness around me, like an alarm clock that had gone off without being set.
I knew it couldn’t be the strangers. Not frequently, but often enough, travelers pulled off the main road to buy tobacco or soft drinks in the only Negro store in Stamps. When I looked at Uncle Willie, I knew what was pulling my mind’s coattails. He was standing erect behind the counter, not leaning forward or resting on the small shelf that had been built for him. Erect. His eyes seemed to hold me with a mixture of threats and appeal.
I dutifully greeted the strangers and roamed my eyes around for his walking stick. It was nowhere to be seen. He said, “Uh…this this…this…uh, my niece. She’s…uh…just come from school.” The to the couple – “You know…how, uh, children are…th-th-these days…they play all d-d-day at school and c-c-can’t wait to get home and pl-play some more.”
The people smiled, very friendly.
He added, “Go on out and pl-play, Sister.”
The lady laughed in a soft Arkansas voice and said, “Well, you know, Mr. Johnson, they say, you’re only a child once. Have you any children of your own?”
Uncle Willie looked at me with an impatience I hadn’t seen in his face even when he took thirty minutes to loop the laces over his high-topped shoes. “I thought I told you to go…go outside and play.”
Before I left I saw him lean back on the shelves of Garret Snuff, Prince Albert and Spark Plug chewing tobacco.
“No, ma-am…no ch-children and no wife.” He tried a laugh. “I have an old m-m-mother and my brother’s t-two children to l-look after.”
I didn’t mind his using us to make himself look good. In fact, I would have pretended to be his daughter if he wanted me to. Not only did I not feel any loyalty to my own father, I figured that if I had been Uncle Willie’s child, I would have received much better treatment.
The couple left after a few minutes, and from the back of the house I watched the red car scare chickens, raise dust and disappear toward Magnolia.
Uncle Willie was making his way down the long shadowed aisle between the shelves and the counter – hand over hand, like a man climbing out of a dream. I stayed quiet and watched him lurch from one side, bumping to the other, until he headed the coal-oil tank. He put his hand behind that dark recess and took his cane in the strong fist and shifted his weight on the wooden support. He thought he had pulled it off.
I’ll never know why it was important to him that the couple (he said later that he’d never seen them before) would take a picture of a whole Mr. Johnson back to Little Rock.
     He must have tired of being crippled, as prisoners tire of penitentiary bars and the guilty tire of blame. The high-topped shoes and the cane, his uncontrollable muscles and thick tongue, and the looks he suffered of either contempt or pity had simply worn him out, and for one afternoon, one part of an afternoon, he wanted no part of them.
     I understood and felt closer to him at that moment than ever before or since.”

****************************************************************

     Tears, in glasslike sheets, now soak the lower half of my face, pouring down my neck, filling the concave spot at the base of my throat, running down my chest as if I were a human downspout directing a flood. This…now this I understand. Only one who has experienced judgment and rejection could write in such a way that captures this specific and underrated need…the intense need to feel normal, if only for a moment. Only one who has known the shameful embarrassment of standing out the wrong way in a crowd could appreciate the total joy of disappearing in blissful anonymity.

As the mother of an autistic child prone to violence, elopement, and very demonstrative public fits, I know all too well this craving to blend in, to feel normal – even if only briefly. During painfully public displays, I too have frequently caught the eyes of others, reflecting like mirrors, either contempt or pity. After years and years of such reflections, I can no longer remember what I actually look like. Somewhere along the line, these gazes have become my truth. I have, at times, come to believe that I am the despised beast or the pitied creature… this, and nothing more.

And so I’ve manufactured ways to convince others of my normalcy, that in turn, normalcy might be reflected back to me; and so that I might believe, albeit momentarily, that I lead a normal life. Like Uncle Willie, I stand erect, hide the cane, disguise my limp, shoot daggers at anyone who might threaten to give away my secret. Normalcy has become both my shield and my crutch. If I look put together, no one will know that I am a mess. If my house is well-decorated, no one will know that I am crumbling inside.

But somewhere along the line, “normal” began to lose its appeal. It became common and dull. I looked with fresh eyes upon my “high-topped shoes and cane, my uncontrollable muscles and thick tongue,” and I held them with the tender love and compassion of a new mother. I allowed myself the freedom to cry the tears long dammed, and in reverential silence, bore witness to the shame and embarrassment so deeply buried. I gave myself permission to grieve the looks of contempt and pity and the years of feeling anything but normal. I looked closely at the “me” who was hiding behind the protection and shelter of attempted normalcy and extended a soft hand to ease her transition into the light.

And as this timid part of “me” stepped forth in high-topped shoes, leaning heavily on a cane, thick-tongued and muscles yet uncontrolled, I grabbed her and pulled her close in an understanding embrace and softly whispered in her ear, “I love your cane. I love your high-topped shoes. I love your thick tongue. I love your uncontrollable muscles. Look no longer into the eyes of others for feedback; from now on, look only within. Enter the world, not as you wish to be, living the life you wish to be living, but enter as you are, living proudly the life you actually lead, back into the world as it actually is. Limp as you will, but limp with your head held high. For within that limp is contained all suffering, sorrow, madness, and despair. Within that limp is contained all things wild and uncontrollable, and within that limp is contained all love, joy, beauty, and depth of soul. Our humanity is held within each fragile and broken step we take, and so, do not hang your head in shame for that which is shared between all humans. Re-enter the world, still broken, still healing, and reclaim your rightful place within.”