They stopped asking long ago.
At first there were calls, casseroles, hands that lingered for a moment too long at the front door, eyes that tried to hold the right thing to say. The world knew then — there was a moment when our pain was visible, when people could point to the broken pieces and offer a bandage. But time is a slow eraser. A year and a half is long enough for the novelty of suffering to fade into background noise. It becomes a quiet fact about “them” that no one wants to unpack. So the questions stopped: “How are you?” dwindled into “How’s he doing?” and then into silence. I learn to live alongside that silence like it is another piece of furniture in the house, heavy and always in the way.
Some days it feels like I walk into a dark cloud before I even step through the front door. The cloud is not always dramatic or sudden — most often it is a steady gray that presses me down, a weight that nestles into the small bones of my day. His depression sits there. The seizures wait like storms beneath the surface; PNES arrives in unpredictable bruises of fear and exhaustion. I am the weather person who has to report the forecast and then build shelter at the same time. I work a full day, stand in meetings, push through emails, then come home to bills and meds and appointments and the soft, sharp pain of two lives that have shifted under my feet.
People talk about resilience like it’s a medal to be pinned on the chest. Someone said it to me the other day, warm and well-meaning: “You’re so resilient.” I smiled at them because that is what smiling is for — it keeps people comfortable — but inside I felt the word ripple and fray. Resilience is not ironclad. It is not a fortress. It is more like a thrifted sweater that I keep repairing, thread by thread, because I refuse to let it go. I put on a good front because the world requires it of me; it’s the currency I use to keep the ordinary parts of life functioning. But there are stitches under the hem that are worn thin, strings I worry will snap if I tug too hard.
Caregiving for someone with PNES is not only physically demanding; it eats quietly at the edges of who I thought I was. There is the endless list of practicalities — coordinating care, handling insurance calls that feel built to test a person’s patience, making sure the house doesn’t become a monument to neglect. There are the emotional battles, the nights where I sit up with him, trying to be steady when he’s unsteady, trying to be a lighthouse in a fog that wants to swallow both of us. There is grief for the easier days we had, grief for the plans that have been postponed, grief for the simple things — a quiet Sunday morning together, a shared joke — that now feel like relics under glass.
And then there is the cruelty of the workplace. The people who scream, who empty their own anxieties into me without care for how I will carry them home; the daily micro-bombardments that leave me raw. After hours of holding space for another person’s suffering, I come home to hold space for the person I love. There is no escape hatch. There is no unpaid day off from the constant vigilance. Even exhaustion has expectations attached to it — the expectation to be available, to be cheerful, to be brave.
People stopped asking because it’s easier that way. They don’t want to see the truth of what long-term illness does to a relationship. It’s complicated; it makes people uncomfortable. So they fall silent. But that silence says something too: it tells me I am carrying this alone, socially if not literally. It tells me that long-term becomes invisible, no matter how catastrophic it feels from the inside.
Still, I cling to hope.
Hope is not the blinding kind that makes everything okay in an instant. It is fragile. It’s the small, stubborn flame we keep under a mason jar — protected, tended, unwilling to be snuffed. It shows up in the smallest victories: a day without seizures, a moment of laughter we didn’t plan, a doctor who listens, a new medication that doesn’t cause a new battle with side effects. Hope arrives in the corners — in the way his hand finds mine in the night, in the rare, clear days when he is his old self enough that I can close my eyes and remember our plans without a hitching breath.
I want my old Tim back. I want our map of dreams — the places we promised to see, the ordinary future that had us growing old together in small, delicious ways. I find myself mourning not just for what was lost but for the erosion of expectation. The life we sketched together becomes a collection of ideas I dust off and examine when I need courage. When people call me resilient, what I want to say is: I am trying. I am exhausted. I am still here. I am still loving him even when it hurts. But those words are cumbersome in a small talk exchange, so I fold them into my silence and return the smile.
There are strategies that help — therapy, support groups, brief breaks when someone I trust can watch him for a couple of hours — but they are not always readily available. Sometimes the help arrives in the form of a friend who brings coffee and doesn’t pry. Sometimes it is an unexpected text that says “I saw this and thought of you” and means the world. Sometimes it is permission I give myself to be less than everything. Saying “I need help” is not weakness; it is one of the bravest things I can do. Admitting I am weary does not mean I’ve failed; it means I am honest with myself.
If you read this and have stopped asking someone how they are, ask again. Ask differently. Don’t let the length of time be the reason to stop caring. Small gestures — a lunch left on the porch, a question that begins with “How are you?” rather than “How is he?” — are not dramatic. They are survival tools. They are oxygen. They are a reminder that the person who shows strength also needs rest.
I keep going because there is a thread in me that believes in repair, not only of him but of us. Repair is slow. It is not glamorous. It requires patience, the willingness to do imperfect things over and over, and sometimes the humility to accept help when it is offered. There will be days when the dark cloud is almost unbearable, when the screaming at work hits just the right note to push me over. On those days, I try to remember the small flame I am tending. I try to remember that hope is not measured by the speed of recovery but by the decision to keep loving, to keep waking up and choosing care, even when it would be easier to let go.
This is my truth: I am tired, and I am still here. I am worn down to the edges, and yet I reach for the day’s ordinary graces. I mourn the life that was, I fight for the life that might be, and I guard a quiet hope like the most precious thing I own. If you see someone under a cloud, don’t assume they will be fine. Ask how they are. Sit a little longer. Let your presence be a kind of medicine. Because what we need more than platitudes is someone who will stay, who will remember that underneath the resilience lives a human being who needs to breathe.
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