This is probably going to be long, raw and a little all over the place, so just hang with me.
I recently went on a Caribbean cruise with my family. This cruise had some incredible highs and some really hard lows. I laughed until I cried some days, and then there were moments where I just wanted to cry. That’s life with hereditary transthyretin amyloid cardiomyopathy (ATTR-CM), though. You can hold joy and grief in the very same moment.
Before we left, my biggest worry was my stomach. It’s been a mess lately, and honestly, I didn’t know if I’d spend the week living in the bathroom. Surprisingly, my stomach behaved… well, at least until nighttime. I was actually able to eat things I hadn’t been able to enjoy in weeks, and that alone made me so thankful.
There were so many things I absolutely loved. The shows were amazing, our cruise director kept us laughing all week, and ’80s Night was hands down my favorite. My sister Shelly and I even got to sing at the Pig & Anchor, which quickly became my favorite place on the ship. Sitting out on the deck listening to live music, eating way too much soft-serve ice cream and just soaking in the atmosphere made my heart happy.
But my favorite moments weren’t the big ones.
They were sitting on our balcony with my husband Brad late at night. I don’t think we made it to bed before 2 a.m. on a single night. We’d sit there listening to the waves crash against the ship and stare up at the stars. Those quiet moments reminded me that even when life is hard, God still gives us glimpses of peace.
I had this picture in my head before we left of floating in the ocean for hours. The island Grand Turk was our first stop, and I couldn’t wait.
But instead of floating carefree, my legs cramped so badly in the water that I couldn’t walk. Then panic started creeping in. What if I can’t get out? What if this isn’t just a cramp? What if this is it?
Eventually the cramping eased, but getting out of the ocean wasn’t easy. The sand had dropped off, and for a few moments I honestly wasn’t sure I’d make it out. That scared me more than I can explain.
Not because of that moment…
But because I watched this disease do this to my dad.
I know what progression looks like.
Amber Cove was much more relaxing. We just hung out in the pool, and honestly, that’s exactly what I needed. I couldn’t get into the pools on the ship because my legs couldn’t handle the ladders, so I was thankful to enjoy one there. Celebration Key was another favorite. The ocean was too rough for me, so we rented a pool noodle and floated around the pool instead. Was it what I had pictured? No. Was it still fun? Absolutely.
The Bahamas were beautiful, and having my scooter made getting around so much easier. Speaking of my scooter… That was probably one of the hardest parts of the trip emotionally.
Every time we went back to the room, Brad had to take it apart because it wouldn’t fit through the room with the bed by the door. Then he’d lift it inside, even though his shoulder was already hurting.
I felt like such a burden.
Everyone told me I’m not. Brad never once complained. My family never made me feel like I was slowing them down. But feelings don’t always listen to truth, and I wrestled with that all week.
Then on Wednesday, I fell on our balcony. One minute my legs were there… and the next they just weren’t. I bruised myself pretty good, but more than the bruises, it was another reminder that my legs just aren’t what they used to be.
I think that’s what this trip really did. It showed me just how much I’ve declined since last year.
Walking in the sand took everything I had. I was frustrated because I had done everything my doctors told me to do before this trip. I prepared. I rested. I planned ahead. Yet my body still wouldn’t cooperate. The swelling was awful, my legs were weak and I found myself getting frustrated that I couldn’t make my body do what my mind wanted it to do.
And don’t even get me started on the elevators.
Nothing brings out people’s true colors faster than an elevator and someone on a scooter. Some people were incredibly kind. Others would push right in without a second thought. Eventually Shelly started blocking the doorway so I could actually get on. She became my own personal bodyguard, and I loved her for it.
So… would I do it again?
In a heartbeat.
Was it hard? Absolutely.
Did I have moments of grief? More than I expected.
But I also laughed, sang, watched the stars, floated in a pool, ate ice cream, made memories with people I love and proved to myself that this disease may change how I travel, but it doesn’t get to decide whether I live.
This cruise reminded me that life with ATTR isn’t about waiting until your body is better.
Sometimes it’s about taking the trip anyway, making the memories anyway, and thanking God for every beautiful moment in between.
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