What ALS Taught Me About Life, Legacy, and Love

composed by Ciara Joyner Plata

Introduction

If I’ve learned anything in life, it’s that some lessons don’t come wrapped in ease or comfort they come in the form of heartbreak, change, and the kind of strength you never asked for. Watching my bestfriend, my grandmother battle ALS has been one of the hardest and most defining experiences of my life. It cracked something open in me. A deeper awareness. A new kind of grace.

May 2018

Early stages of her journey of ALS.

How ALS has impacted my family

ALS is cruel. It takes away movement, speech, even simple moments we take for granted everyday. There is no cure, it is a disease that slowly progresses and affects the body from the inside out. My grandmother, raised in New Orleans, the queen of crafting, an active participant and member of many associations and events throughout her city, experienced her body changing, but held onto her faith, strength, and wisdom. She taught me more about resilience than any motivational quote ever could.

There were days I felt upset and frustrated. Angry, even. But through it all, I learned to show up differently for her, and for myself. I learned that presence is powerful. Those small things like brushing her hair or sitting beside her watching her favorite game show, showing her my outfits and watching her face light up holds much weight as grand gestures. It shifted how I love, how I listen, and how I lead.

Her journey with ALS reminded me how fragile and beautiful life is. It made me more intentional, more present, more grateful. It’s why I care so deeply about alignment and legacy because I’ve seen how quickly things can change and how life can take an unexpected turn. It is so important to live in a way that reflects your truth.

Final Thoughts

This post isn’t about sadness, it’s about strength. It’s about honoring a woman who shaped me, and a journey that continues to teach me what it means to show up with heart. ALS may have taken a lot, but it also gave me something a deeper purpose, and an even deeper love.