March 13, 2026

“Will I never rest again – slow, languid & golden with peace?” – Sylvia Plath

When I see people talk about grief, I see them talk about how it comes and goes, how it’s heavier some days, and lighter others. For me, and I presume for even more people, it’s a constant. It doesn’t come and go, it’s not lighter or easier some days. It is always with me, and it is always heavy and ugly and violent. Grief is the one constant I can rely on. It is the single most profound, striking thing I experience, and it is the only thing I know I’ll feel everyday. Even my anger subsides and my hope peters in and out. But my grief never falters or wavers. I suppose it’ll be something I have to figure out how to live with for the rest of my life. There’s no undoing the past or getting lost time back. I could recover tomorrow, live until I’m one hundred, and my life still will have been cut short. And there is nothing I can do about it. I think I’m always going to feel this desperate, crazed feeling that leaves me clawing at every clock. I wanted so badly for something different. I don’t want to spend my life just being a person existing in a room of someone else’s house. I wanted my own. I still want it. But the reality is that that just isn’t physically possible for me. There are things in life that you cannot overcome, no matter how hard you try, or how persevering you are, or how tenacious your spirit is. There are life-altering events that will, in fact, alter your life and distort your world and permanently change how your present and future life looks. There is not always a way out of the bad things. And people will look away and shun you for it. And I know my grief is my own to work through, my own to break down, but not everything is digestible or sensible. Sometimes the ugly things are just ugly and uncomfortable, and the worst part, continuous. 

When I was younger, I thought that grief was only something you felt in relation to losing someone. It took me a long time to even accept that what I was feeling was this profound grief over the loss of my own life – because I did lose my life. A loss happened. Death is not the only way to lose your life. But there’s no ritual for grieving a body that’s still alive. There’s no wake or funeral or memorials or speeches. You just have to keep living in it, with it. You’ll die and die everyday and still wake up breathing and older and it will leave you confused and make you jaded and bitter and angry. At least, that’s what it’s done to me. I never wanted to be this way – angry at other people for having something I didn’t. Angry at them for not taking advantage of having a healthy body, for complaining about things that I would, lamely put, kill for. And what I really think it actually is, is just grief for an experience I know is no longer possible for me. The loss of it all. 

And how do you work through your grief when you’re trapped in a body that can’t function? There’s no running from it, no drowning yourself in work or jetting off for vacation, or a night out on the town or a dance party in your room. When the world and its joys are no longer accessible to you, what do you do? 

I think that people think if your illness hasn’t killed you, or if it’s not explicitly fatal, that somehow everything is actually just fine. And people will disregard your grief and diminish the severity of your illness if you’re still alive. But what is a life if it’s only filled with suffering? What is a life if you never get to enjoy the sun warming your skin? If you never get to wipe raindrops off your glasses or share space under an umbrella with your friend? What is a life if every movement is painful for your body? If standing makes your legs and arms shake and leaves you breathless? If and when you lose the ability to tolerate sound and light? What is a life if the only escape would be escaping your skin? Someone’s life shouldn’t be measured out in days, or figuring out how to make the next hour tolerable. Someone’s life shouldn’t be spent wondering how they’re supposed to get through the night and survive the next day. But my life is. 

I want to laugh again. I want to be reckless and drive and stand in line at the grocery store and learn how to make an omelette and feel the ocean wrap itself around my ankles and pull at my feet. 

But instead I’m writing this how I always write now – horizontal in a pitch black room, my phone’s brightness turned all the way down, an ice pack on my forehead, earplugs in, a heating pad wrapped around my back, tapping silently on my keyboard. Tonight will be about survival, and so will the next day. It is a difficult grief to sit with. Even when there’s no room, it makes it.