Unshakable Spirit

It’s strange how life can turn on a dime. One moment, you’re on top of the world, your laughter echoing through the halls of GW Medical School, and the next, your whole life is redefined by three letters: ALS. It was 2006, and I was 35. I was just hitting my stride, or so I thought.

It started so subtly that I barely noticed. A slight weakness in my left foot and hand. I just wrote it off as a consequence of too many late nights hunched over a keyboard. Then came the persistent twitch in my leg, a tremor I couldn't quite control. The doctor's visits became more frequent, the tests more invasive, until the day the words were spoken. ALS. Lou Gehrig's disease. The swift, relentless thief of movement and voice. It felt like all the air had been sucked from the room.

The initial shock struck like a cold hard weight of steel.  I was a man who thrived on dynamism and quick wit, but now I faced a future where my own body would betray me, muscle by muscle. My girlfriend, clung to me, her tears a mirror to my own silent despair.  Our soon to be child , oblivious in the innocents of joy, were a stark reminder of the life I was fighting to hold onto.

In the early years, I battled with a fierce determination. I adapted my work, dictating emails when typing became too difficult and conducting meetings with assistive technology that I tried to mask with my usual booming confidence. I invested in every new technology, clinging to the hope that a breakthrough would emerge. I learned to appreciate the smaller victories—the ability to lift a fork to my mouth, to take a wobbly step, to have the ability to move my head to control the cursor on the computer, or clicking a switch with my thumb without faltering.

But ALS is a cruel, progressive adversary.  The devastating news that we had lost our unborn sparked a deep dark depression that felt impossible to escape.  The tremors became shakes, the shakes became paralysis. Soon, I needed assistance with almost every task. The Medical School, once my second home, became a distant memory. My world, once boundless, shrank to the confines of my home office, then my wheelchair, and finally, my bed. The pain of the past and the uncertainty of the future forced me to make a heartbreaking decision. I had to let go of my dream of a family. The loss of our child and the reality of my illness made me realize that having a family would not only be physically challenging for me but would also place an enormous emotional and physical burden on her.

Yet, even as my body failed me, my spirit, remarkably, did not.  I found new ways to connect. With the help of assistive technology, I learned to communicate through eye movements, spelling out words, one click at a time. I devoured scientific journals, my mind still sharp and curious. I listened to music, finding solace in melodies that stirred memories of dancing in the “Showtime” marching band at Howard University. My wit, though communicated slowly, remained intact, often bringing a much-needed laugh to the difficult days.

My future dream slowly sank in mentally, thinking as the progression worsens it would make it impossible for me to fulfill the roles of a father and husband. What I once desired might have seemed impossible or even selfish in light of my circumstances. But now, after living with ALS for 19 years, I wonder if my life would have had joy living out the dream of having my family.

My story isn't one of miraculous recovery but one of profound resilience. It's a testament to the enduring power of the human spirit in the face of unimaginable pain. My laughter may have faded, but my presence, my quiet strength, and the love I inspire, resonates ever more deeply.

My faith has been my anchor through it all. When my body began to fail me, I learned to lean on something far greater than my own strength. I've found a new kind of freedom in surrendering to God's will. My physical limitations have stripped away the distractions of the world, leaving me with a deep, unwavering connection to Jesus. ALS has taught me the true meaning of faith—trusting in His promises even when the path ahead is unclear. I find strength and peace in knowing that my worth isn't in what my body can do, but in who I am in Christ. Every day, I am reminded that God's plan for me is perfect, and His love is more than enough. My body may be failing, but my spirit is soaring, held up by the unshakeable promises of a God who loves me unconditionally.