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The Write Stuff Group

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A Dance of Love

Listening to my husband describe how ALS affects him is one of the most heart-wrenching experiences I've ever had. We've been navigating this journey together for a while now, but each day brings new challenges and revelations. When he talks about the disease, there's a mix of frustration, vulnerability, and resilience in his voice that cuts straight to my heart.

The other day, he mentioned feeling particularly weak when he's moved into certain positions during our transfers. As his wife and caregiver, it's my responsibility to ensure his comfort and safety, but more than that, it's my deep desire to make him feel as secure and supported as possible. Hearing him talk about that weakness—it’s like a dagger. I can't help but feel a pang of helplessness, wishing I could do more, be more for him.

We sat together, and he explained how his muscles just don't respond the way they used to, how a simple shift can make him feel like he's lost control over his own body. I noticed the way his eyes clouded with a mix of sorrow and determination. He hates feeling like a burden, though I remind him constantly that he never could be.

In those moments, I hold his hand a little tighter, listen a little more intently, and promise myself to find ways to make the transfers easier. Maybe it's adjusting our techniques, finding new equipment, or just being more attuned to his subtle cues. It’s a dance we’re learning together, step by step, stumble by stumble.

ALS is relentless, but so is our love. It's a bond forged in the fires of these daily struggles, making every small victory and moment of peace all the more precious. As his wife, I grieve the losses with him, but as his caregiver, I stand ready to fight every battle by his side, no matter how small or large.

Rocky& cloie💙


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