My daughter has had severe cognitive issues since she was a toddler. She got to have four years of memory and then it was wiped. Clean off, her mind a sudden blank surface. It was caused by a sudden, devastatingly high fever. Her little body, wet and red, hooked up to machines. Her hair, clumped and damp against her forehead, her eyes were closed. It was worse than the nightmares had made it seem.
She survived, which is the greatest blessing I’ve ever gotten. A true miracle. But her memory was gone, not only the memories she had made so far (first day of kindergarten, her dad and her going to the park, trying chocolate cake for the first time (she was ambivalent)) but her ability to make new memories as well. Every day, she had to be told her name. Elin. Elin is her name. We repeated it several times a day.
It is a terrifying thing to go through. She was our first child, and suddenly we were faced with the idea that she might be a child forever. That she might need her mother every day, once again, forever. But slowly, she started repeating the things we had said.
“Grandma is coming tomorrow.”
“Winnie the Pooh soon.”
“It’s christmas next week.”
However, there would be no answer, only polite confusion when we asked if she had liked it when grandma had come by. If the Winnie the Pooh story had been fun. If she had gotten everything she wanted for christmas. Her memory didn’t retain anything once it had already happened.
Another thing we noticed was that we didn’t need to tell her that grandma would be coming tomorrow, for her to know it.
We quickly realised that we had been granted another miracle.
Elin, who had been so unlucky and so badly hurt by the illness, has a memory that works in reverse. She can tell what is going to happen, but as soon as it has happened, it will be lost to her.
It’s sort of like telling the future, but in a very boring way.
Her reverse memory works much like ours. It’s the easiest for her to know what is going to happen immediately after the present. This week and the next is fairly clear to her, although stuff might get lost occasionally. She might not know exactly what she’ll be having for dinner in two weeks, just like you might not remember what you had two weeks ago.
Further into the future it gets foggier. She knows the big stuff and some details that seem more random.
She told her grandfather that she was sorry to hear about the cancer when she was seven, two months before his doctor would test for it.
She has even told me that she sometimes lies awake at night, thinking about embarrassing moments that haven’t happened yet.
She’s in her thirties now. She has a husband and two kids. She keeps a careful diary throughout the day, as well as more general calendars, so that she can keep her life straight, in case anyone should ask. Most people she meets on a day to day basis, don’t even realise her predicament. She uses maps to go most places and while she is able to learn new words, if they’ll be used again in the future, some specialised language simply escape her. Her children’s names are said so often that she always has a readily available future moment to pull them from, but others are occasionally offended that she doesn’t remember them, that they refuse to introduce themselves. That refusal of introduction is, of course, the reason she doesn’t know their names in the first place. She mostly laughs at it now.
She’s perfect. I’m so proud of her. She’s so much better than we had even dared hope she would be, back when she got sick. We’ve had so many great memories together, which I keep safely, to tell her about when she asks. She likes to hear about her teenage years, where her diary habits were slipping a bit, and I am the only one who can tell her exactly how much eyeliner she used to wear.
I wanted to tell you about Elin.
She called me yesterday in tears. Told me that it is all dark from next week. She doesn’t see, hear, feel anything after tuesday. Of course, we’ve always known that she would find out her time of death before we could. I’m glad she can share it with me. I’ve been at her deathbed before and I can survive it, even if I don’t want to.
It’s going to be a heart attack. She didn’t call to tell me that. She called to tell me that when I hold her hand tuesday, right before I start the CPR (which won’t work, but I am going to), I need to tell her the names of her children. Otherwise, she doesn’t know when those will escape from her memory too.
Still, I’m worried for her. She usually knows when she doesn’t remember something. But she didn’t say “I don’t remember anything after tuesday.” She is going somewhere dark. She is going somewhere dark where I can’t follow.