Two Kinds of Gone by Dr Bruce Powell

"I've lost my memory,”- It's one of the most common things people say after a brain injury. And it's almost never quite true.

It certainly feels that way. But as with most things about brain injury, it isn't as simple as that.

Memory isn't one skill. It's three separate jobs: taking information in, keeping it, and finding it again. Brain injury can knock out any one of those jobs while leaving the others more or less fine.

Some people genuinely struggle to take new information in, it arrives distorted, or there's too much of it at once, or it just never quite registers.

Far more common, and far less understood, is a different pattern. Information goes in just fine, but it simply doesn't get filed in an orderly fashion.

True amnesia, nothing sticking at all, ever, is rare. Most people living with memory trouble after a brain injury have a messier, more ordinary version: some things stick, some don't.

Look at it this way

Picture memory as your own personal library. Every event, every experience, is a book, filed away, ready to be pulled out whenever you want it.

When memory fails, you go to the library shelf where the book should be, and it isn't there. Without any other explanation for the book missing, you assume it's gone.

Except usually, it isn't. Most of the time, that book is stuck on the wrong shelf, the wrong section, or wedged in among other titles it has nothing to do with. It's still in the building. It's just not where you left it. What failed wasn't the book. It was the moment someone tried to shelve it. That someone is your librarian.

Two librarians

Imagine two librarians.

One is neat and tidy, careful, methodical, everything filed in perfect order. When the shelves fill up, she calmly boxes up the older memories and moves the material down to a basement storage area in a logical, organised fashion.

This librarian gets forced out of her job the day you sustain your brain injury.

When you wake up, another librarian takes on the role. This librarian loves your books every bit as much as the first librarian, but she is distractable, disorganised, with no system whatsoever.

She flicks through the hundreds of new books that appear every day, piling them on the shelves, wherever there's a gap. She knows a particular book exists, she's certain it came in, she just has absolutely no idea what she did with it.

There's no point blaming the new librarian. It's nobody's fault she isn't organised and she is doing her best. The books usually aren't lost; they are just haphazardly filed.

This is why those living with a brain injury can pull up something from the basement storage from thirty years ago more easily than something that happened this morning. The old stuff was filed by the careful librarian, back before the injury. Today's memories are being handed to the new one. It isn't that your memory is inconsistent. It's two completely different filing systems, being judged as if they were the same thing.

Now, it's true that not every missing book has been misfiled. Some are genuinely gone, never filed in the first place, not misplaced but truly destroyed, and no clue, cue, or hard graft will ever bring them back.

Whether a book is lost or destroyed matters enormously, because of what happens next.

Recall versus recognition

There's a second thing worth knowing, because it changes what might be done to help. That's understanding the difference between recall and recognition.

In our memory library, recall means being able to walk straight to a shelf, finding the book you are looking for, without any help. Recognition means being handed the actual book, or shown the right aisle, and then knowing that it's the right one. Most people living with a brain injury have this kind of memory trouble, finding recall much harder than recognition.

How can we help?

Think about how we try to help people living with a brain injury.

We offer well-meant advice, "try harder", "concentrate", "you'll get there".

You can see now that we are working on the wrong skills. What does help is a nudge in the right direction: a first letter, a category, a familiar setting. None of that fixes the filing system. It just gives your librarian better habits and a better place to start looking.

The difficult part

Here's the tough bit. The bit where some hard truths and honesty are needed.

Your new librarian suspects that some of the books are properly gone. But she hates an empty shelf, so she quietly fills the gaps, piecing together something plausible from other books she already owns, things she's overheard, whatever makes a decent story. And she's good at it. Good enough that the finished, fairly neat looking, made-up shelves feel just as real as an actual book.

The new librarian is so good at it, in fact, that after a while even she can't reliably tell her own real books from the ones she's ghost-written. If you ask her, she will tell you a story with total confidence, but that does not mean that it ever existed.

This is uncomfortable to say, and worse to hear, but loved ones need to know it, because correcting it out loud ("that's not what happened") never helps. It sounds more like an accusation, perhaps that you're losing your mind. That kind of response tends to produce exactly what you'd expect: distress, anger, and a feeling of distrust, that nobody is listening.

I learned this the hard way, from someone with every right to ask. Reading something I'd written about my own accident, my wife looked up and said, simply: "Is this what you think happened?"

I didn't have a straight answer. I now recognise that some of it was reconstructed, assembled from old material already on my medical shelves, and from what she and others had told me over the years. I'd been confidently handing it over to editors and publishers as memory, when the actual book had never existed at all.

I know that I'm not the only one. It is far more common than anyone lets on. It's rarely said out loud. But it should be.

Lost and found

The real, ongoing job for the library's owner and everyone around them, isn't remembering harder, it's learning to sort the collection. Figure out which books are misfiled and can be found again with the right cue, the right setting, the right patience; and which books are properly gone, never filed to begin with.

Both are usually true at once, in the same person. Mixing them up causes real harm either way. Treat something recoverable as permanently lost, and you give up too soon. Treat something genuinely gone as though your librarian just isn't trying hard enough, and you've quietly started blaming her for something she was never going to be able to fix.

There's no neat resolution here. What there is instead is a slow, ongoing audit of our library, a working out, book by book, what can still be found, and what needs to be grieved as gone.

None of that is easy to say, or to hear. Telling someone which of their memories might still turn up, and which won't, means sitting with real uncertainty in front of someone who's frightened. Get it wrong either way and it costs something. False hope on one side, quiet abandonment on the other.

But staying quiet isn't kinder. It just delays the cost and hands it to someone to discover alone, later, with no one there to help.