There’s a vacation on my calendar. It’s circled in pen, and I look at it often — not with excitement, but with a strange mix of longing and fear.
Before I got sick, vacations were simple. A chance to get away, to unplug, to enjoy food and sun and space and laughter. Transthyretin amyloid cardiomyopathy (ATTR-CM) doesn’t just affect my body. It shadows my decisions. Now, planning a vacation feels like staring into a fog. A beautiful, uncertain fog where joy might live — but so might regret. Because I have ATTR-CM and that means rest isn’t simple anymore.
Don’t get me wrong: I want to go.
I want to see the ocean. I want to eat something that doesn’t come from my list of “safe” foods. I want to feel the sun on my skin without wondering if I’ll pay for it later. I want to feel like a person again — not a diagnosis, not a patient, not a body constantly in management mode.
But there’s fear. So much fear.
I’m afraid of eating. ATTR-CM has made my digestion unpredictable and sometimes cruel. I’ve learned the hard way that even a small indulgence can trigger intense pain, nausea, or diarrhea. When you’re far from home, far from your usual comforts, that fear grows louder: What if something I eat wrecks the whole trip? What if I can’t recover in time to enjoy anything?
Then there’s the ocean. I want to see it — need to. The wide horizon, the sound of waves, the feeling of being small in something bigger. But when I stand at the shore, I’m afraid. My legs are weak. Walking through soft sand is exhausting: it feels like walking with weights on. The thought of swimming? Almost laughable. What used to feel freeing now feels like something I might not be able to handle. Will the water welcome me, or remind me of what I’ve lost? How do you vacation when your body feels like it might betray you at any moment?
Still, beneath the fear, there’s something deeper pulling me toward this trip. It’s not about sightseeing. It’s about my soul.
Finding myself again
Living with a chronic illness drains more than your energy. It drains your sense of self. You become your condition — tracked by numbers, defined by symptoms, consumed by appointments. Somewhere in that process, I lost a part of myself I didn’t know I’d miss so much: the part that feels joy without fear attached.
I need to feel something different. I need to stand in a place that’s bigger than my body’s limits. I need to hear the waves and not think of pain. I need to see the horizon and not think of what I am losing. I need to feel God again — not as a concept, but as a Presence.
I crave a moment that reminds me I’m still me.
I don’t know how this trip will go. I’m making lists and packing carefully. I’m planning around fatigue and digestive issues. I’m building backup plans for the backup plans.
But even with all of that, there’s no way to fully prepare for the unknown. And maybe that’s part of the journey.
I’m hoping I’ll have the strength to walk by the water — even if only for a few minutes. I’m hoping my stomach will cooperate enough to let me enjoy at least one meal without dread. I’m hoping to laugh.
I’m hoping to feel stillness. Peace.
And I’m holding space for the possibility that even if none of those things happen the way I imagine, it might still be worth it.
Riding the waves of fear
One of the hardest lessons chronic illness teaches is that fear doesn’t just disappear because you want it to. Sometimes you have to move forward while it’s still there — naming it, respecting it, but not giving it the wheel.
I’m afraid of this trip. But I’m also tired of letting fear win.
So I’m going.
Maybe it won’t go as planned. Maybe it’ll be hard. But maybe — just maybe — it will be exactly what I need, even in ways I can’t see yet.
And maybe God is already there, waiting on the shore.
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