We Need a Word to Describe How It Feels to Anticipate Death From Terminal Cancer

Where is her head?

What is she thinking?

Is she sleeping?

What did she say?

Is she looking out?

Is she standing up?

Where are her hands?

Where are her eyes?

Where is her head?

Is she looking out?

Is she sleeping?

The National, “Where is Her Head”

It’s the season of culminating moments. Last days of school. Talent shows. Dance Recitals. Graduations. A season of celebrating accomplishments before growing up and looking forward to the next life event. I view them from the vantage point of a Mom. Cherishing the moments that I can. Watching the ceremonial moment where my daughter walks through the halls of elementary school for the last time. And the realization hits me. There’s a good chance that I won’t be here to see my son do the same thing two years from now.

In a second, the bottom fall out from beneath me. A happy moment becomes sad, and I’m bawling uncontrollably in my husband’s arms in front of other parents. The closest word that I can come up with for this moment is “grief.” I’m grieving all of the precious future moments that I won’t get to see my children experience. I’m jilted by how unfair it is that I don’t get to be here to see them. I’ve spent all of these years growing them from babies into where they are now, and I don’t get to stick around to see how far they bloom.

Since my diagnosis last year with Stage 4 (terminal) cancer, this feeling runs like a river beneath the surface at all times. Though it only comes up and boils over occasionally, it never leaves. A knowing. An end point that gets casually glossed over in so many conversations by the living, who can still see the future by the scale of decades. “It goes by so quickly. They’ll be grown up before you know it!” A phrase built into our common vernacular that takes for granted that we will get to stay around to see it. And it so casually passes into conversation by those who don’t know or who forget that I won’t. So my brain lives on two planes, and I let the moments swirl; I breathe and let the casual sayings pass. A covert depression, hidden by someone who still functions. Who still makes and laughs at jokes. Who still smiles and looks “healthy.” I can experience the world as it is today, but am forever trapped by the pressing truth that tomorrow is a locked door I eventually can’t go beyond.

Before my daughter’s recital, I take a moment to myself to gather my bearings before transitioning to who I must be for the day. What better place to do this than sitting on a porch, watching the clouds move and listening to the birds? But instead it hits me. There will be so many other days ahead, right here. With those same clouds and birds, and the wind. But there will no longer be a “me” here to witness them. There will be laughter in this yard, and a rushed piling in to go to events. There will be honking horns and music blaring and driving teenagers heading out on dates. And all of these sounds will go unheard by me.

They will exist, but I won’t. Perhaps as unreal to me as photographs of younger versions of family members before I was born.

And where will I be then? I don’t know. But I imagine that a bit of me will stay here in some way. Because my family is and was my full heart while I have/had the opportunity to be among them. Some of us just get to stay here longer than others. All you have left is the gratitude that you got to experience what you did. And you to try to let go of regrets for the time you wasted focusing on so many things that didn’t matter.

There’s not an adequate word in our commonly used language to describe all of this. Yes, grief is close, but it is far from complete. It’s not a grief for something that’s already gone, but something that will be gone. It’s a grief for the loss of others to you and a grief for yourself all at once. And it’s terribly more complicated than just an empty feeling. Fear gets mixed in. It weaves in and out to remind me of the scariness of death itself. It likes to hide out and then step back in just when it is least welcome.

And it doesn’t stop there. I fear being sick beyond comfort even more. And I fear my kids seeing me that way and having those memories. I am experiencing life before me while anticipating death within me. I am happy, loved, appreciative, whole, sad, angry and fearful all within the span of a day. We need a word to capture all of that. But we are woefully lacking. Because only those of us who have been struck by that existential slap get to experience it; that feeling can’t be appropriately captured and shared enough to become part of the language. And those who haven’t? They try not to think about death at all. So I will continue to let it sit, underneath, as my secret unnamed emotion.