I became sick with a virus in junior high and I never really recovered. We know this phenomenon now as a “post-viral illness,” but I didn’t have a name for it back then. I just knew that I was more tired than I used to be, things started hurting more than they did before, and the more I ignored it and tried to push through it, the worse it got. It came with a slew of diagnoses that piled up over time, and about six years ago it progressed to the point where I had to leave a career I loved at the age of 27 to go on long-term disability.
Now my bed is where I spend most of my time. It’s where I’ve spent most of my time over these last six years or so. Well, we’ve gotten a new bed since then, but I just swapped one memory foam surface for another and carried on like before. I lay in that bed day after day and try to find ways to make my life feel big and still a part of the lives that are out there, beyond.
Outside my bedroom window is where my friends, family, and strangers alike all go about living. Work meetings. Brisk walks to the mail. Longer walks to the ocean. Popping into the store for something they forgot to buy earlier. Travels near and far. Sometimes I get to go with them. I only get to go if it’s with them. But more times than not, I just wait in this bed for reports about what it was like out there. I live vicariously.
When I started getting sicker and the fatigue crept into my bones to make my body heavier and heavier, I developed this fear of the world going on spinning while I lie here. Which is what it did, does. That’s how these things work. But even though I knew it was inevitable, it was still hard to accept that—to worry about being left behind. And I do miss out on things. A lot of things. But I don’t always feel like I’m being left behind. My loved ones, the people who really care, they have tethered themselves to me. They try their best. And I try my best. And sometimes those bests can meet in the middle to give me a sense of normalcy, a glimpse into how it was before. And sometimes there isn’t enough slack in the cords, so we fall short and things just feel like a shadow of what could have been for me.
But I only really notice that lurking shadow when I’m straining to see out the window, past these four walls. In here, even on the worst days, things are still in vibrant color. My loved ones come and sit next to me and live part of their lives from this bed, too. There’s comfort, terrible jokes, games, movies—normal things that people do to make memories. There’s support in big ways that bond me more tightly to these people and in smaller ways that someone might not notice if they don’t look closely. There’s still joy. Creature comforts. Things are different and sometimes impossibly hard but somehow also just fine. Nice, even.
It’s hard to find the words to describe what it’s like to have your world change so much, become smaller in this way. It’s worse than you could probably imagine. But it’s also more beautiful and meaningful than you’ll likely ever give it credit for.
So much exists in this one room, in this one body that bends in ways that were never intended.
On the harder days when I need a little extra courage and comfort, I find myself ruminating on this one line from an untitled Andrea Gibson poem: “A difficult life is not less worth living than a gentle one.”
I don’t think I would have appreciated that line before now, before this new version of my life. But it’s true. I live a life that is not often kind to me in the big, big ways. But honestly, it’s so gentle to me in response to that. There are little signs everywhere that it’s trying to make it up to me. Those signs are mostly people. People who love me enough to sit with me in the dark and the pain. People who always bring the color back.
I would be lying if I told you that it’s easy or that I don’t have days when I just want to scream about how unfair everything is. My life is so different than I thought it would be. It’s the kind of different that you could never see coming until you’re already lying there in the thick of it. But I think there’s way more love around me than I ever expected, so it’s a balancing act.
On the outside peering in, it might not look like much, this life spent in this bed. But to me, it’s something. And it’s mine. And I can see that it’s worth living and fighting for.