A difficult life is not less.

The bed in that photo is mine. It’s where I spend most of my time. It’s where I’ve spent most of my time for the last 6 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 and 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 while I lay 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 colour. 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 didn’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.

Andrea Gibson wrote a poem that I think about a lot.

“A difficult life is not less
worth living than a gentle one.
Joy is simply easier to carry
than sorrow. And your heart
could lift a city from how long
you’ve spent holding what’s been
nearly impossible to hold.

This world needs those
who know how to do that.
Those who could find a tunnel
that has no light at the end of it,
and hold it up like a telescope
to know the darkness
also contains truths that could
bring the light to its knees.

Grief astronomer, adjust the lens,
look close, tell us what you see.”

I see a life that is not often kind to me in the big, big ways. But one that is so gentle to me in response to that. There are little signs everywhere that it’s trying to make it up to me. It’s all different than I thought it would be. But I think there’s more love than I expected. On the outside looking in it might not look like much, this life spent in this bed. But it’s something. And it’s mine. And I can see that it’s worth living.