Our Champions
May is ALS Awareness Month: Shannon’s Powerful Story of Love & Resilience
May is ALS Awareness Month and this is what it looks like through the eyes of a caregiver. Although my journey is over, I lift all caregivers up in prayer. You are true warriors.
“Let’s be honest—caregiving, especially as a spouse to someone with ALS, is a relentless dance of love and exhaustion, a paradox of devotion and frustration. When the person you’ve built a life with, the one who once shared the weight of decision-making and the rhythm of daily tasks, is still physically present but increasingly silent in the ways that matter most, it’s a unique kind of heartache. They’re there, yet not there. They can still communicate, yet the words you long for—the guidance, the partnership, the shared burden—are often absent. And in that absence, the weight of it all settles squarely on your shoulders.
You become the caregiver, the fixer, the decision-maker, the doer of all things. The lawn that needs mowing, the leaky faucet that won’t stop dripping, the bills that pile up like unspoken accusations—it’s all yours now. The tasks your husband once handled with ease now fall to you, and you juggle them alongside the tender, unyielding demands of caregiving. You paint walls and mend pipes, you push the mower through the grass, and you wonder how many more days you can keep this up. You pay the bills on time, but at what cost to yourself? The mental load is crushing, and the silence—oh, the silence—can feel like a chasm.
You long for communication, for help, for the partnership that once defined your relationship. You want them to weigh in on decisions, to offer advice, to share the burden. But deep down, you know the truth: they are struggling too. They’re carrying a weight you can’t fully comprehend—a death sentence, a future slipping away, a body betraying them bit by bit. They have bad days, days filled with hurt, anger, and silence. Days when the frustration of their own limitations leaves them unable to be the partner they once were. And so, you swallow your own frustration, your own loneliness, because you know their silence isn’t about you. It’s about them, about the battle they’re fighting within.
And then there’s respite care. Those precious hours or days when someone else steps in, when you’re given the gift of time away. But even then, even in those moments of supposed relief, you’re not free. You’re alone. The better part of you—the person who has been your partner, your anchor, your other half—is absent. You sit in the quiet, and instead of peace, you feel guilt. Guilt for needing the break, guilt for not being there, guilt for wanting a life that feels less heavy. You feel torn—torn between the need to care for yourself and the pull to care for them, torn between the desire to breathe and the fear of what might happen if you look away for too long.
The loneliness is profound. Even in a room full of people, even in the stillness of respite, you feel the weight of their absence. You miss their voice, their touch, their presence. You miss the way they used to fill the spaces in your life, the way they made you feel whole. And now, even when you’re given the chance to rest, you can’t fully let go. The burden of it all follows you, a shadow you can’t shake.
It’s not fair. None of it is. Not the disease, not the silence, not the guilt, not the loneliness. But here’s the truth: you are extraordinary. You are doing what most people couldn’t, and you’re doing it with a love that defies the odds. You are a caregiver, a partner, a warrior. You are allowed to feel frustrated, to feel guilty, to feel lonely. Those feelings don’t make you weak—they make you human. And they remind you of the depth of your love, even when that love feels like it’s breaking you.
So, let’s admit it: this is hard. It’s messy and unfair and overwhelming. But let’s also acknowledge this: you are not alone. Your love is a beacon, even in the silence, and it’s enough. It’s more than enough. Keep going. Keep breathing. And when the weight feels unbearable, remember—you are seen, you are valued, and you are loved. Even in the quiet, even in the loneliness, you are enough.
This May, as we raise awareness for ALS, let’s also raise our voices for the caregivers, the spouses, the families who carry the weight in silence. Let’s honor their strength, their love, and their resilience. Because in the silence, we speak. And in speaking, we find hope.”
