What No One Tells You About Grief: Three Things I Wish I’d Known

If you’re reading this because someone you love has just been given a number — six months, a year, "let's take it week by week" — I'm not going to tell you it gets easier, because I don't actually know that yet, almost ten years out, and I'd rather not lie to you in the first paragraph. What I can tell you is what I wish someone had told me, back when I was standing in a kitchen holding a diagnosis like it was a live wire.

I thought grief started at the funeral. That was the biggest thing I had wrong. I pictured it the way our culture pictures it: a death, then a service, then casseroles arriving on the porch, then a respectable interval of sadness with a beginning and, eventually, an end. 

What no one tells you — what I had to learn in real time, badly, with no instructions — is that if the person you love is dying slowly, the grief doesn't wait politely for the death to show up. It moves in early. It unpacks its bags in your chest the day of the diagnosis and starts rearranging things while your husband is still sitting across the table from you, still making the same joke he's made for twenty years. While your mother with dementia is fixated on finding the keys to a car she no longer owns and couldn’t drive anyway. While your difficult sister becomes even more volatile and estranged and, finally, leaves your life completely.

I didn't have a name for what I was feeling, so I assumed I was failing at something. Grieving a man who could still hold my hand felt disloyal, like I was rehearsing his death in front of him. I later learned this has a name — anticipatory grief — and that clinicians who work in hospice see it constantly, and that most of the people living through it don't know what to call it either. They think they're anxious. Or weak. Or doing something obscurely wrong by mourning someone who hasn't left yet. 

Not having a word for what you're feeling is its own kind of injury, on top of the one you're already carrying. If I could hand you only one thing, it would be the word. You are not imagining it, and you are not doing anything wrong.

Here's the second thing I wish I'd known: the logistics are the easy part.

You will get remarkably competent, remarkably fast. You'll learn to manage a staggered medication schedule the way you once managed a work calendar. You'll sit through a conversation about scan results with the same composed face you use to order takeout. You’ll calmly answer the same question for the fortieth time in one afternoon.

Grief turns out to produce a strange kind of skill — you can absorb almost anything if you keep feeding your body enough tasks to perform. Dog walks. Refilled prescriptions. Getting dressed. None of that is the hard part, even though it looks, from the outside, like the whole job.

The hard part is what happens in the grocery store. It's standing in line behind a stranger deciding, with real anguish, between two brands of paper towels, and feeling a flash of hatred so total it frightens you. It's noticing every wedding ring on the metro, every brunch table of couples laughing in the sun, and understanding, with a clarity that feels almost violent, that their catastrophe still fits inside an ordinary Tuesday and yours no longer does. 

Nobody prepares you for the rage. I wish someone had told me it was coming, and that it wasn't a character flaw — it was grief, wearing an unfamiliar coat.

The third thing — and this is the one I'd underline if I could underline anything in someone else's life — is that you will start, quietly and against your will, to pull away from the person who is still here. You'll visit a little less. You'll keep the conversation on the surface. You'll go through the motions instead of staying in the room. 

I need you to hear that it is not a failure of love. Every clinician I've spoken with describes this as protective — the nervous system building a little distance because it cannot survive the alternative, full exposure, for the whole duration. Knowing that doesn't dissolve the guilt. But not knowing it is worse, because then you're carrying the guilt and the confusion both, and one of those you don't have to carry.

Now the part I wish I could have skipped learning entirely.

I really wish I could tell you that living through a slow loss prepares you for loss in general — that grief, once practiced, becomes a skill you carry into whatever comes next. I believed that myself, right up until my father, married to my mother for one day shy of seventy years, dropped dead of a broken heart just days after my mother passed. I had done years of anticipatory grief for my mother. I had done five compressed, pressurized months of it for my husband. None of it — not one second of it — prepared me for a phone call I didn't see coming. It didn’t prepare me for the aftermath, either, the ugly, no contact estrangement of my sister.

Slow grief and sudden grief are not the same muscle. If you are bracing yourself for the death you can see, please don't also brace yourself for believing that bracing will work on the deaths you can't. It won't. That's not a failure of preparation. It's just what's true.

And here is the last thing, the one I actually believe, even on the days it doesn't feel true: grief that arrives before death and grief that arrives after are not opposites, and neither one is a rehearsal for the other, and neither one is something you can do correctly or incorrectly. You will not get a roadmap, because there isn't one — not for the illness, not for the dying, not for the years afterward. 

What you will get, if you're lucky, is a handful of people who don't ask you to perform strength, and a body that keeps doing small mechanical things — coffee, dog, dishes — until one day those things stop being a performance and start being your actual life again.

I wish someone had told me all of this before I needed to know it. I'm telling you now, not because it will make what's ahead of you easier, but because you deserve to walk into it with your eyes open, and because you are not the only one who has stood exactly where you're standing.