I lit candles in my fireplace today, in coloured-glass-filled lanterns, which cast bright shadows on the walls in crystal hues. I lit candles in lanterns with filigree metalwork, so that patterns danced and swayed with the flames, and the shadows were cast out (except where they were beautiful). I lit candles that were plain, in shining glass, with just a hint of glitter to remind me that in the darkness, even the smallest refractive surface can multiply light.
I lit candles today to celebrate light. To force light into my world. Because it exists and I forgot that for a while.
I keep looking over at the candles, still lit, and trying to remember, because it’s dark in here.
It’s dark because it’s getting into winter, and that’s always a time I struggle with.
It’s dark because half of my heart got left behind in America when I flew back to England, and I still haven’t resolved the new agony of living with ‘home’ in two places. I’m dogged by a constant sense of misplacement, displacement, disproportionate loneliness, and the knowledge that all of the sads cause grave offense to my people here.
It’s dark because I haven’t had enough sleep, pushing my body to its limits again to stay connected, and am reaping the mental-health whirlwind, which goes with that.
It’s dark because I want every precious second of my future, whilst being very aware that I’m frittering away my ‘Now’s, wishing for it.
It’s dark because I’m standing atop a mountain of the flotsam and jetsam of my yesterdays, preparing to fly and hoping for bright skies, but feeling the tangled ropes of Before are still snaked about my ankles, about my psyche, and perchance about my neurology.
And that’s dark.
It’s not inevitable, but that bleak, black name – Alzheimer’s – looms within stormy question marks above my future, tainting the brightness with doubt.
I went to see my maternal grandmother today, Nana, who forever has been something of a family joke because of her erratic behaviour and strange thoughts. I can remember the entire family bolting from the living room as her shadow wandered along the net curtains, its unique gait measuring the tread in shade, of each second until she rang the bell. For a long press. Twice.
I remember us peeking, stifling each other’s giggles as the glass in the door blurred her form, hoping we had been undetected. I recall my mum relenting, now and again, and opening the door, eventually shutting it, fuming at another frustrating interaction.
I remember she was invited to Christmas. Once.
I remember her bizarreness escalating into something beyond a joke, and how our treatment of her began to leave a bitter taste in the mouth. I remember diagnoses being sought, and found. Some are schizoid. One is Alzheimer’s.
Alzheimer’s. The disease which killed my paternal grandmother. The disease which angered my dad because it wasn’t listed as the cause of death, even though it killed her many, many months before her body died. The disease which rendered my sweet, loving, ever-sharp grandma, violent. The disease which stripped her memory bare of function. Of cognition. Of us.
That disease. The dark one.
Because it comes in like gloaming with a few forgotten words and puzzled moments, and gradually builds into clouds of obscurity. It swallows precious memories, obscures function, shrouds faces and people in swirling, impenetrable night. And you who are left, see it happen. You who are left, get to watch as dusk rolls in and deepens, irrevocably turning your loved one to midnight and lunacy.
You see them smile because they *might* know you, but any rate you’re smiling at them.
You see them panic because they *know* they knew that [insert almost anything here], once upon a time, and they know that they don’t know it now, and they know that night is falling.
You see them unable to remember the function of a refrigerator; a book; a fork.
You see them stripped of their character, their heritage, their belonging within the circles of their own world.
If you’re lucky, in the end, you don’t see them forget how to breathe, but by then they’ve already been gone for so long, maybe it’s a relief when it happens*.
Today I took Niece and Neff to see my Nana. She didn’t know us, but she smiled and strung some noises together conversationally. She was slumped down in her bed because she had forgotten how to push herself upright. She clung to her blankets (later, one of the carers told us that she hits people when they change her bedclothes because it distresses her so much, and they have to hold her down, for their own safety). She hadn’t forgotten that she likes chocolates, and eagerly savoured the five I popped into her mouth, as the children chose which ones she should have next.
I told her our names. I told her my mum’s name, and WonderAunty’s, and told her that they send her their love. I told her that the children belong to my sister, who belongs to my mum, who belongs to her. She smiled and made happy noises and didn’t make eye contact, because I’m not sure if she remembers what that is any more. But she heard us and knew we were there, and enjoyed our company for the ten minutes I could bear to keep the children trapped in her lonely, dark, incontinence-scented room.
When I was in America, I got two new tattoos – a wave, rolling along my arm; and the hardwired heart, now forever imprinted across my ribcage. The trip has left me with more to have, and before I leave England’s shores for a sudden, new future, I will have two more – one to commemorate half a lifetime’s friendship, and one to forever entrap WonderAunty’s calligraphy beneath my skin.
I used to worry about that classic admonishment towards those who’ve gone under the needle – “What will you look like when you’re 90?”
The other night I recalled that concern, with amusement, to a friend for whom I’m getting a tattoo, forever preserving the spot where she drew a sparkling heart on my leg. I told her that when I’m 90, I’ll be in a nursing home, proudly telling my carers about the ink on my saggy, wrinkled old body, and the meanings behind each piece – the people behind each piece. And the love.
Because each piece I’m going to have is to keep a person etched, forever, as part of my own story. Each tattoo will display proudly and without shame, that these markings are important, every drop imbued with the importance of each person by whom they were inspired. Each inky forget-me-not will provide beautiful memories for those people, too, as I cherish them to the point of permanence.
Today was a stark reminder, though, that given the proclivity for Alzheimer’s to run in the female line, and that both grandmothers were stricken with it, there is a likelihood one day *I* will begin to succumb to the darkness. No more relegated to the emotional/psychological darknesses of depression, which still envelop me from time to time, this other, bigger darkness will have the lights going out in my mind forever.
My Nana is surrounded by photographs of family. We keep visiting, keep talking to her, keep reminding her who we all are, in desperation (though for our sake or hers, I no longer know) that she will unlock a fragment of knowing to cling to; to remember.
I’m taking things a step further, and inking my special people into my skin. Forever-reminders of how special they are; of how much I love them; of how they’re part of me.
I hope, I hope, I hope, they fucking work.
Because you might forget-me-not…but the chances are I might forget myself.
*Interesting story, though: my dad was with my grandma when she died. It appeared as though she had stopped breathing, so he leaned in to check on her. She woke up and looked right at him – she was *back*! She told him “Oh, the singing’s lovely, but I’m not ready yet.” and then turned over and fell asleep again. Later that night, she did die…but with a look of astonished and very pleased surprise on her face.