In that quiet, fragile moment, the air between us seemed to thicken, heavy with unspoken fears and the weight of an uncertain future. I noticed his gaze, fixed and distant, and it sent a shiver through me. I turned to him and softly asked, “What are you thinking?”
His eyes met mine, and I saw a depth of sadness and worry that I wasn’t prepared for. His voice, though steady, carried the tremor of a soul bracing itself against the inevitable. “I am thinking,” he began, his words slow and deliberate, “what's it going to feel like when it's my time to die? When ALS has ravaged my whole body, and I can no longer breathe, and it's time to give in to this demon disease?”
The room seemed to shrink around us, and my heart ached with a pain I could hardly bear. I reached out, gently taking his hand in mine, our fingers intertwining as if to form a fragile lifeline. I took a deep breath, trying to steady my own emotions, and whispered, “Let's focus on one day at a time.”
His grip tightened slightly, a silent acknowledgment of the shared hope between us. “Today, we have,” I continued, my voice firmer now, “tomorrow is unknown. That's how we live with ALS.”
In that moment, we weren’t just fighting a disease; we were embracing the preciousness of each breath, each heartbeat, each fleeting second. It was a silent promise to face whatever came next together, one day at a time.
As the words settled between us, a delicate stillness enveloped the room. His eyes, though clouded with fear and sorrow, seemed to soften just a bit. I could feel the tremors of his anxiety through our linked hands, each pulse a silent testimony to the battle raging within him.
I squeezed his hand gently, trying to anchor us both in the present. “Remember when we used to talk about our dreams for the future?” I asked softly, my voice a gentle bridge to safer, happier memories. “We painted such vivid pictures of what life would be like. We didn’t know then what lay ahead, but we created a world of possibilities.”
He gave a small nod, a faint smile touching his lips as he drifted back to those days. “We were so full of hope,” he murmured, his eyes glazing over with the tenderness of nostalgia. “We thought we had all the time in the world.”
“We still have hope,” I replied, my voice firm. “It’s just... different now. It’s about cherishing what we have, right here, right now. It’s about finding joy in the small moments and letting go of the fear of what’s to come.”
He looked at me with a mixture of gratitude and resignation. “It’s hard,” he admitted, his voice barely above a whisper. “Knowing what’s coming... it’s like living with a shadow constantly looming over me.”
“I know,” I said, my voice breaking slightly. “And it’s okay to be scared. But you’re not alone in this. We’re in it together, every step of the way.”
A single tear escaped his eye, trailing down his cheek. I reached out, gently wiping it away. “We’re going to make the most of every day,” I promised. “We’ll laugh, we’ll cry, we’ll fight, and we’ll love. We’ll live.”
He took a deep, shaky breath and nodded again. “One day at a time,” he repeated, as if trying to internalize the mantra.
“One day at a time,” I echoed, my heart swelling with a fierce determination.
As we sat there, hand in hand, I felt a fragile sense of peace settle over us. It wasn’t about denying the reality of ALS or the fear of what lay ahead. It was about reclaiming the moments we had, making them count, and finding strength in each other.
Time might be a relentless thief, but in those precious moments, we were living fully, deeply, and authentically. And that, I realized, was the truest form of defiance against the shadow of ALS.
Rocky&Cloie💙