I’ve been getting a lot of notes lately.
Nice ones. Thoughtful ones. People who read something I’ve written or heard about the book and felt moved to reach out and say: I didn’t know. I had no idea what you were going through. I’m so sorry I wasn’t there.
I want to say something to those people directly, something I truly mean:
You have nothing to feel bad about. Here’s the thing about being in the middle of a long illness … you don’t actually need that much from most people. What you need from most people is simply for them to still be there when it’s over. To not have quietly decided that you were too much, or too complicated, or too hard to maintain a relationship with across the years of it. To pick up where you left off without making the illness the whole conversation.
That’s it. That’s the bar. And most of you cleared it.
What stayed with me wasn’t the dramatic gestures. It was the ordinary ones. The texts that said nothing much. The plans that kept getting made even when I couldn’t always show up for them. The dinners and the group chats and the normal Tuesday conversations that had nothing to do with my health. The people who just kept including me in regular life. Who treated me like a person first and a patient second. Who just treated me like a person and didn’t think about the patient part at all.
That was the gift. Not being handled. Just being included.
I remember the later years especially; the reproductive health stuff, the surgeries that came after the aneurysm, the stretch that was quieter and less dramatic and somehow harder to explain to people. By then the initial crisis was long past. There was no longer an obvious reason for anyone to check in. And yet there were group threads that just kept going. Plans that kept appearing in my phone. Conversations that pulled me into normal life even when my body was making normal life feel very far away. I didn’t always respond. Sometimes I just read and put my phone down and felt, quietly, less alone. I’m not sure those people knew they were doing anything. That was exactly the point.
Here’s what I wish people understood about being on the receiving end of support during a long illness: your capacity to actually absorb it is smaller than anyone realizes, including you. In the hardest moments I could not have taken in more than I did. There was no room. I was using everything I had just to get through the appointments and the recoveries and the waiting … the endless, grinding waiting. What people offered that I couldn’t receive didn’t disappear into nothing, but it also didn’t land the way they hoped. The things that got through were the things that didn’t require anything from me. The things that just existed alongside me without asking me to respond or perform gratitude or explain my situation one more time to one more person.
You don’t have to have been there for every hard moment to have mattered. Most of the hard moments happened in hospital rooms and waiting rooms and my own bathroom floor, and there wasn’t room for anyone else anyway. What I needed outside of those moments was just … normal. Someone to talk about something other than my health. Someone who didn’t look at me like I was fragile. Someone who was still interested in who I was beyond what was happening to my body.
If you were that person — if you just stayed, in whatever ordinary way you stayed — then you did enough.
I know it can feel like you should have done more. I know hindsight makes people want to rewrite their own role in someone else’s hard chapter. But I want to offer a different frame: the people who made it through to the other side of this with me aren’t the ones who performed the most visible support. They’re the ones who just didn’t leave.
That’s what staying looks like. It’s quieter than people expect.
So if you’ve sent me one of those notes: thank you, genuinely, for thinking of me. But please put down the guilt. You being here now, reading this, caring enough to reach out? That’s the whole thing. That’s what I needed then and it’s what I appreciate now.
You stayed. That was enough.