Two years ago, I met someone at a Neighborhood Association meeting who mentioned they were organizing a fundraiser for individuals and families living with ALS—Lou Gehrig’s Disease—and asked if I’d be willing to lend a hand.
At the time, I knew little about this devastating illness, but I agreed to meet her later to help brainstorm.
Over coffee, Deb shared the story of HARK-ALS—a small but mighty organization she joined after losing her younger brother to the disease—and the overwhelming financial and emotional challenges faced by families living with ALS.
Fast forward to yesterday afternoon, when we held the 2nd Annual HARK-ALS Florida Fundraiser at St. Petersburg’s James Museum of Western & Wildlife Art. I’d helped Deb—who’s now become my big sister (and who claims co-parenting rights for Wolfie)—organize the first event last fall, and this year’s gathering was bigger, warmer, and even more impactful.
For those who attended, it was something special—an event where people shared their time, treasure, and talent, and where a community came together to generously support those in need. Attendees also heard from families, both in person and through video messages, whose lives have been touched and transformed by HARK-ALS.
For both events, Deb asked me to write a poem. Last year’s came easily, drawn from the stories she’d shared. This year, though, I wasn’t sure where to begin—until I read a letter from the wife of someone that Hark-ALS had helped. Her words stayed with me, tender and raw, and from them, the poem wrote itself.
Written from the perspective of a family living with ALS, Love, Heavy as Light began as a letter of gratitude and became a meditation on caregiving’s paradox—how love, hope, and tenderness can feel both heavy and luminous. It reflects on a single moment of freedom—a breath without machinery, a glimpse of wholeness—and honors the quiet, steady hands that make such moments possible.
The inspiration came from this passage in her letter:
ALS, a thief of movement and breath, has rewritten the script of our lives in ways we could never have imagined. Yet even in the face of its unyielding progression, there are moments—precious, fleeting—that remind us of the beauty of normalcy, of the simple joys that once seemed ordinary but now feel extraordinary.
Thanks to the incredible support of HARK Inc., and their decision to purchase a lift for our vehicle, Rocky has been able to experience one of those moments. For the first time in what feels like an eternity, he was able to transfer into our car with ease, breathe freely without his BiPAP, and drive through our neighborhood. It was a moment of liberation—a whisper of the life we once knew—and a testament to the resilience of the human spirit.
If you’d like to learn more about the incredible work that HARK-ALS is doing—or to help support families living with ALS—you can learn more at:
https://hark-als.org/
Love, Heavy as Light
In the stillness that hums
through each day—
where breath is labored
and silence presses,
heavy as breath itself—
kindness leans toward us.
It bends low,
a hand at the small
of the back—
steadying,
lifting,
proof we are held.
ALS has rewritten us.
Every movement measured,
every breath bargained.
A thief moving slow as dusk
through the rooms of our lives.
Yet even a thief
cannot take
the way sunlight spills
on familiar streets,
or the hum of tires
bearing us outward
into the world.
Because some choose
to see us,
we are granted moments—
a lift beyond the chair’s weight,
a spirit remembering itself.
That day, he drove.
No mask.
No machine.
Air rising in his lungs.
The light in his gaze—
a door swung open
to memory,
to the man I love,
strong, as he’s always been.
The gift was not metal or motor,
but freedom.
The gift was seeing him whole.
We carry this kindness,
lantern-lit in trembling hands,
each step guided
by their hallowed gift—
hope, steady as breath.
Love,
heavy as light.