Page 1 of Invisible Bars
Prologue
NAJI ALI
January 2015
“Nana Li, is… is there anything you need?” I asked gently, glancing at my grandmother, whose real name was NanaAli.
Her eyes, a deep well of wisdom, sparkled with the memories of her past, and her hands, marked by the passage of time, rested gracefully in her lap.
Six months prior, my grandmother had received the life-altering diagnosis of Congestive heart failure. The doctor ad presented her with options for treatment, but she immediately declined palliative care, holding firm to her belief that she wanted to pass away in her own home, surrounded by the familiar comforts that had nurtured her throughout her life—much like my grandfather had before he passed.
A weak chuckle escaped my grandmother, laced with both humor and a touch of sadness.
“Naji, for the tenth time in the last hour, I told you that I’m fine, baby.” Her voice, though frail, held that familiar cadence that had always soothed me.
“I know, b-but I just can’t help but be… worried.”
I felt the familiar twitch begin to surface—a premonition of the tic that often bubbled up in moments of anxiety, but I steeled myself against it, focusing on her instead.
“See,” Nana Li said, her eyes locking onto mine with an intensity that belied her physical weakness. “That’s the last thing you need to be, since we both know the toll it can take on you.”
When I was four years old, I was diagnosed with Tourette syndrome—a neurological disorder that made my own body and voice feel like strangers. It explained the sudden movements and unexpected sounds that seemed to erupt without warning, no matter how hard I tried to hold them back. In a world that prized control and composure, my body refused to play along. Anxiety, fear… even excitement could ignite a storm of involuntary tics—sometimes subtle twitches, other times jarring vocal outbursts—that felt completely beyond my control.
One moment stood out in my memory: a birthday party, meant to be a celebration, quickly became a nightmare. The noise, the laughter, the chaotic energy of the crowd… it all became too much for me. I remember the lights flashing overhead, the sound of the music, the shouts of children, and then, without warning, the uncontrollable outbursts. My body jerked, and loud vocalizations escaped before I could stop them. My face burned with embarrassment as I realized everyone was staring. I wanted to shrink into the floor to disappear, but instead, I just stood there, feeling exposed, confused, and utterly helpless.
That was just one of many moments when my condition forced me into a space where I was different. It was a constant reminder that my body didn’t always behave the way I wanted itto, and it wasn’t easy to navigate a world that didn’t understand or always make room for people like me. The isolation I felt was suffocating. I couldn’t even explain to others what was happening.
How could I when I couldn’t control it myself?
I spent so many years in frustration, embarrassed by my inability to fit in, to do things that seemed so easy for others. It made me question what normal even meant. Social situations were minefields of anxiety, and I found myself withdrawing, trying to avoid the situations that left me feeling like an outsider.
“Naji,” Nana Li continued, but her voice was interrupted by a soft cough, a reminder of her declining health. “Come take a seat next to me. I want to talk to you,” she urged, patting the space beside her on the bed.
I took a seat on the edge of her bed, the fabric of the quilt beneath me worn but comforting.
“Naji, what do you plan on doing with your life when I’m gone?” she asked, her tone shifting to one of seriousness. “As we both know, I won’t be here for too much longer, and I’ve come to accept that reality. You’re going to have to come to terms with it as well, baby.”
Tears welled in my eyes, clinging to the edge before threatening to fall.
The thought of losing my beloved grandmother pressed against my chest like a weight I couldn’t lift. I felt paralyzed, caught between heartbreak and helplessness, as memories of our time together—sweet, familiar, sacred—flickered through my mind like a slideshow I wasn’t ready to turn off.
Sensing my distress, Nana Li reached out, her hand soft and warm as it rested on my arm—the same way she always calmed me during my worst tic outbursts.
“Calm down, baby. Calm down,” she whispered, her voice firm but tender—grounding me, pulling me back from the edge when everything inside felt like it was about to break.
My head jerked once—then again, harder—followed by a sharp inhale through my teeth.
“Eh—eh—stop it, stop it, stop it!” I muttered, the words spilling from my lips like a scratched record. My shoulder rolled in an abrupt twitch, followed by a forceful blink that made my eyes sting.
“Breathe, baby. Just breathe,” Nana Li whispered, rubbing my forearm with her thumb in small, slow circles.
My fingers tapped rapidly against my thigh—click-click-click-click—as my breath hitched in and out, chest tight. I whimpered once, involuntarily, and my leg kicked against the bed with a thud.
Just hearing my grandmother’s soothing voice and feeling her reassuring touch instantly pulled me back from the brink of my anxiety. She had become my unwavering source of support, fully understanding the unpredictable nature of my reactions and the emotional turmoil that accompanied them. Even in moments of distress, when my body convulsed in protest and my voice stammered with panicked repetition, she never took it personally.
Instead, she remained a steadfast presence, her eyes reflecting patience and love, as she recognized that my outbursts were not a reflection of my feelings toward her—but rather a manifestation of my ongoing struggle to control what my body refused to hide.
With her by my side, I felt a little less alone in my journey.
