Reflection: Learning to Live Inside This New Life

What I’ve learned is that some days I can only do a little. I’ll begin something—writing a paragraph, cooking an egg, trying to fold laundry, even just getting dressed—and halfway through, everything inside me slows down. My energy drains in this quiet, complete way, like someone unplugged me without warning. On those days, it feels like my brain is right here, present and awake, but everything else is out of reach. My thoughts are available, but the bridge between thinking and doing is broken. I reach for something that used to be automatic, and it’s simply not there.

On the hardest days, I go back to the very first things I started writing about right after the stroke—my basic truths. Even when I feel like I can’t move or make anything happen, I still have a much better sense of myself than I did before. And that, in its own strange way, is remarkable. I feel frustration, peace, guilt, acceptance… all layered together. But somewhere inside all of that, there’s a quieter peace, one that says, “You don’t really mean this guilt. There’s something bigger holding you.”

I can usually sense a “little day” coming. If I’m really tired, I know it before my feet touch the floor. Some mornings I wake up and the first thing I feel is, “Everything is going to fucking suck today.” Other days I wake up hopeful and halfway through the day a wave washes over me, sudden and heavy. One minute I’m fine and moving forward, and the next minute I just… can’t. Everything stops.

On the days when nothing wants to start, I sometimes know it immediately. Sometimes I don’t know until I’m already halfway into my tasks. When the wave hits, I feel myself collapse inward, like the world just pulled a curtain down. But just as quickly, there are days when the day “returns” to me. After resting or reading or staring into space, something shifts—like a light flicking on in a dim room—and suddenly I can do things again. I feel that soft click inside me and I think, “Okay. I’m back.” Sometimes I even finish the day strong, which always surprises me.

The racing thoughts can start from something specific or something vague. They don’t need much of a reason. But now, even when the thoughts are wild and loud, I know I’m going to be alright. Maybe not today, maybe not this hour, but I will be. That is a truth I didn’t always have. When the racing finally stops, I feel normal again—steady, breathing, myself.

Writing has become both my escape and my challenge. When the writing flows, I feel like everything is as it should be. I feel full, like I have plenty to say and a clear path to say it. I feel connected to myself in the way I used to. I want to use those days to help people understand that things are fine the way they are—that the bad spells don’t last, and that even when I don’t feel great, I know it won’t stay that way. Sometimes all it takes is a nap to reset the whole world.

But on the days when writing won’t come, it’s maddening. I want to say so many things, and the thoughts are alive in my mind, but the words refuse to come out. It’s like trying to thread a tiny needle with trembling fingers. I get frustrated, especially because I feel quieter now than before—like there’s so much I want to express but the pathway is narrow. But even on the silent days, something in me knows that the silence won’t last either.

Something unexpected has been happening through all of this: I’ve become more compassionate. Not only toward other people, but toward myself. Sometimes I watch myself the way you’d watch someone you love—softly, curiously, without judgment. I notice how I respond to things, how I breathe through a hard moment, how I try again even when I don’t want to. Sometimes that awareness actually tickles me. I laugh at myself. I joke about it. There’s a lightness I didn’t have before.

But of course, not every day is soft. Other days, the humor evaporates. I get pissed off. I get frustrated at my brain, my body, the whole situation. If I can sense it coming, I try to catch it early so I don’t spiral. When frustration rises, I feel stuck—but oddly, I also feel more at peace with the stuckness than I used to. Even when I feel crappy, I know it’s just a feeling. I know it will pass. Sometimes a nap helps. Sometimes staring into space helps. Sometimes turning on the TV and letting my mind settle helps. The feelings come and go, but I stay.

I’ve noticed something else, too: I’m much more aware of people. I feel closer to them. Softer. I want connection more than I ever did before. I listen more, especially to the kids. I hear details in their voices and stories that I never paid attention to before. I’m surprised by how deeply I care, how much more present I am with them. Recovery opened something tender in me that I didn’t expect.

At the same time, communication can still be its own battle. Sometimes I know exactly what I want to say—I’m thinking about watching TV—and the only word I can get out is “rabbit.” Not even close to what’s in my mind. And that’s the only word that will come. Those moments used to scare me; now they mostly frustrate me. They remind me I’m still healing, still rewiring. But I also know they don’t define me. They come and go like weather.

Blank moments bring up fear and anger. One minute everything is fine, and the next minute the inside of my mind just… clears out. Empties. Goes silent. I haven’t had anyone guide me through a blank moment; I mostly handle them alone. But I always know I’ll come back. I always know I’ll be okay.

My stroke survivors’ group is one of the places I feel most understood. There’s a kind of knowing there—an unspoken understanding—that whatever I’m thinking or feeling might be something someone else has lived through too. Sometimes the most meaningful moments happen before class starts, when we’re just talking. The conversations flow in a way I don’t have to work for. The people in that group just get it. They know what it means when I pause. They know when I need a minute. They know the difference between silence and struggle. That kind of understanding is rare.

I think often about people who don’t have a community. People doing this alone. It hurts my heart to imagine anyone trying to navigate these waves without connection, without someone to say, “Me too.” I want to help people find each other. That feels like something important I can do.

I still worry about falling. That fear lives in me. Once I fell so fast—one moment standing, the next moment on the ground—that I had no time to react. I bruised my elbow badly. It shook me, not just physically but emotionally. It made me more careful. More aware. More nervous, too. The next day, I moved differently—slower, more conscious of every step, more aware of how quickly things can change. Since then, the fear sits deep in me. I want stability, but I’m afraid of losing strength by relying too much on tools. It’s a delicate balance between safety and independence.

There are so many everyday skills I’m reclaiming. One of the things I’m proudest of is speaking more clearly again—on certain days, the words come out smooth. When that happens, I feel relief and accomplishment, like I’ve just gotten a piece of myself back. I still feel intimidated by driving. The idea of coordinating everything—movement, attention, reaction—feels overwhelming. I don’t know when or if it will feel right again. But when something does click back into place, when something feels normal, it’s like slipping into a familiar coat. It feels like coming home.

Through all of this—the frustration, the surprises, the blank moments, the heavy days, the compassion that keeps growing, the fear, the victories—I am slowly learning how to live inside this new life. I’m learning to breathe with uncertainty instead of fighting it. I’m learning that even when I feel stuck, I’m still moving. I’m learning that recovery isn’t linear, but it is alive. It changes. It grows. So do I.

The most important thing I’m learning is that sharing my story matters. Writing this book matters. Showing up to my support group matters. Reaching toward others matters. I want people to feel less alone. I want them to know that things can be hard and still be okay. That feelings are temporary. That community is everything.

And that feels like something worth doing.Something steady.Something generous.Something real.

Something that gives this whole journey a purpose I never expected to find.