I was so looking forward to craft night. It was Monday night Bible study, but with scissors and glue and piles of colorful paper. We were making prayer boards — something creative, something fun, something I hadn’t done in a long time. I was excited. I needed this. Something lighthearted. Something normal.
But then, like it always seems to do, transthyretin amyloid cardiomyopathy (ATTR-CM) showed up first.
I had barely started eating when my stomach began its slow revolt. The dull ache turned into pressure, and suddenly all I could think about was how to sit without making it worse. I told myself to breathe through it, to push through.
But then came the hands — fingers that wouldn’t grip, thumbs that wouldn’t press down, hands that refused to do something as simple as cut paper or peel stickers. And that’s when I froze.
Everyone around me was chatting and cutting and creating. I was stuck. My body stopped cooperating, and so did my mind. I went quiet. I pulled into myself, like I always do when the frustration starts bubbling up. Because when did this become my life? When did I become the person with limits?
I didn’t want anyone to notice. I didn’t want help. And yet, at the same time, I desperately needed help. And here’s the hard part: I hate that I need help.
I hate how quickly this disease can make everything feel uncertain — whether it’s eating, walking, holding something, even just sitting in a chair for a while. I hate that I have to think so hard about the things I used to do without even blinking. I hate that my body feels like it belongs to someone else. And I hate how easily the emotions show up when my guard is down.
But here’s what I didn’t expect: The women around me saw it. Not just the frozen hands or the way I kept shifting in my seat. They saw me.
They stepped in, quietly and gently — no fanfare, no big “are you okay?” moment to make me feel exposed. One moved her chair closer and helped cut the pieces I couldn’t. Another leaned over and started tying the knots for me. Someone handed me a glue stick without making a big deal out of it. They all kept chatting like nothing had changed, but I knew what they were doing.
They were loving me, even through my silence. Even through my stubbornness. Even when I didn’t want to need help, they helped anyway. And that cracked something open in me. Not in a dramatic way. Just enough to make me exhale. Just enough to remind me that maybe I haven’t lost everything. Maybe I haven’t lost myself. Maybe I’m just learning how to live inside this new version of me.
The beauty of community
I still hate what this disease has taken. I still ache for the version of me who used to move fast, think fast, act fast. I want to be able to go somewhere without fear — without fear of stomach pain, fatigue, or my body saying “no” halfway through. I want to plan something without wondering if I’ll need to leave early or push through discomfort.
I want, just once, to go and be without limits.
But until that day, I’m learning something else: There is still beauty in being surrounded by people who don’t need me to be at my best to love me fully. There’s comfort in being helped — not pitied, but helped — by women who see me as I am and show up anyway.
That night didn’t go the way I wanted. I did finish my board, with help, but it is finished! My body reminded me, again, that I don’t get to be carefree anymore. But something else happened, too. I was seen. And I was carried. Not in a dramatic way. Just in the way that matters.
So if you’re in that place — angry at your body, grieving what used to be, holding back tears at a table full of people — you’re not alone. You’re not less. And you’re still worthy of being surrounded by those who will lean in, even when you try to pull away.
Maybe we don’t get to live without limits. But we can still live with community, with small moments of grace, and with people who reach out their hands when ours won’t work.
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