Remembering that I don't remember (or, Forgetting what I once knew)

"How does it feel inside your head when you "remember" something? What happens to all the atoms and molecules in your brain then? Do you think they suddenly jump back and take up exactly the same positions they were in when you experienced what you're thinking about?"

Jostein Gaarder, Through a Glass Darkly

This quote comes from one of my favourite authors, Jostein Gaarder, in her book Through a Glass Darkly. It comes from a conversation between a child and an angel, the angel wants to know what it's like to be human, in this passage the angel is asking what it feels like to remember. Recently I have had cause to think about this quote quite deeply, and wonder what really happens when you remember something? Conversely, what happens to memory when you forget, or when you have a brain injury and loose memories?

It has been an odd journey for me with memory. My husband, David, was with me when I had my stroke, and somewhere along the way I realised that I didn't know who he was. My parents arrived at the hospital not long after I arrived there by ambulance and they quickly saw that I didn't know David. I wasn't overly distressed by his presence, but I couldn't place him in what I knew of my life.

Reality Check:

So this is what happened to me in the two years prior to my stroke: I met David in May, fell in love with him so deeply I knew I wanted to spend the rest of my life with him, he asked me to marry him in October, we married 14 months later in December. We travelled around Europe for 4 weeks on our honeymoon, moved in together on our return and I resumed work as a high school teacher. Three months after our wedding I had a stroke.

My sister visited me in the hospital, bringing with her photo albums with photos of our wedding. My Mum tried (unsuccessfully) to remind me who David was. I remember looking at the ring on my left hand and wondering where I got it and why I was wearing it. Later in the afternoon, my Dad drove David back to our house so he could pack a bag for me with clothes and toiletries, and the few other things I would need in hospital. I don't know why, but as soon as he had gone, I began to miss him. My heart seemed to remember what the molecules in my brain could not. That night I recall being quite distressed when the nurses insisted that David go home. My Mum and Dad had left, and only David remained. After he left I felt abandoned. He had brought my iPod and I listened to music and audiobooks for most of the night because I was afraid to sleep. I must have fallen asleep eventually because when I woke up, it seemed I had lost even more of my memory. This was quite distressing for me, I didn't know where I was or what had happened to me. I was surrounded by strangers. David arrived as soon as the ward was opened, and again, I felt calmer with him close by. My Mum arrived soon after, as she did every day I was in the hospital, knowing I needed someone familiar to help bridge the gap between where I found myself and where the rest of the world thought I should be.

And so began the long journey back. David was able to take two weeks off work, one week I was in hospital and the next week when I returned home. As well as losing a considerable portion of my memories, I had lost the use of my right arm and leg, could barely speak, and needed 24 hour care. My Mum and Dad helped David to care for me, taking it in shifts so that David could return to work. Everyone in my family contributed to the efforts made to help me remember. David made me take off my wedding ring one day, to show me the identical inscriptions in our rings: "K & D 1.12.12". My Mum tracked down her cousin who had filmed our wedding and got him to make a copy. My best friend downloaded all the photos her husband had taken of the wedding. My sister showed me all the things I had made for our wedding as well as reminding me of some of the things we had done.

As time went by, I eventually began to regain mobility and relearn many of the skills I needed to live independently. I have never regained the memories that I lost, despite everyone's best efforts to remind me. I have frequently wondered what my brain looks like now. Is there a patch of dead cells just existing there? Are they all still there, just not connected to anything else? I look at photos, and watch our wedding video, and it's like I'm watching someone else. Someone who is identical in every way, just whole and perfectly functioning. I acknowledge that it's me, that I did in fact marry David. But I can't quite believe it. We often talk about renewing our vows, but we have never got around to doing it.

So what does it feel like inside your head when you remember? I can tell you what it feels like when you forget: there's an uncomfortable fluttery feeling, bordering on panic. There's a sense that whatever it is, it's just beyond your line of vision, as if it's waiting there to be noticed. It's sitting behind a veil, off in the corner of a mirror. It's on the tip of your tongue. No matter how hard you chase it, you'll never catch it. No matter how high you reach, or how long you strive, you will never reach it.

I've learned to live with the reality that I have lost something precious. I've spent the intervening years getting to know my husband again, in the months following my stroke I fell in love with him all over again. We've just celebrated our 5th wedding anniversary, and though we've had our troubles, we have come out stronger and more deeply in love as a result. Memory is not just about what's in your brain. My heart remembers the love I have always had for him, my hands remember the comfort they feel when they hold his, and when I snuggle in beside him at night, I know I am home.

In our wedding ceremony we had a poem from Pablo Neruda and it's oddly apt to our situation:

I love you without knowing how, or when, or from where.

I love you straightforwardly, without complexities or pride;

So I love you because I know no other way

than this: where I do not exist, nor you,

so close that your hand on my chest is my hand,

so close that your eyes close as I fall asleep.