How to Make Soup

May 22, 2021

My sister says, on the phone, ‘sometimes when I talk to mum, it’s hard – you know – to keep the conversation moving forward’.

I know what she means. And I’m relieved it’s not just me who feels this.  I am especially relieved because it is me who mum forgot, not my sister.  

When I talk to mum, blindly, on Skype, our conversations don’t just feel disconnected because of distance and the disconcerting fracture that comes as the internet swoops in and out. Our conversations feel disconnected because mum is.

‘Do you think she could pick us out of a lineup?’ I ask my sister.  My sister isn’t sure. But she reveals a clever trick she employed during a recent call.

‘I propped my phone up on my kitchen counter and made soup as I talked to mum last night, that way I could talk her through the recipe and hold ingredients up to the lens for her to see’.

Sweet potato, butternut and turmeric, she tells me.

‘And then I held the camera to the pan so mum could see it all bubbling.’

I imagine mum’s face as she watched my little sister’s soup, breathy and hot in the pot. I imagine her smiling.  I imagine she might have said she has never eaten a sweet potato before. Like she has said of other very ordinary foods. 

‘Gosh, this is delicious! What is it?’

‘Yogurt, ma.’

‘Well, it’s lovely; I don’t think I’ve ever had it before … have I?’

‘Possibly, mum’.

Mum’s memory is shot, but her interest remains intact. She is always a delighted and engaged listener, even if the stories we tell her slip through almost as soon as we’ve related them, like fine grained rice through the too big holes of a colander.

My sister’s soup-making-on-the-screen wouldn’t work for me though.

I don’t turn my camera on, remember.

Because I am certain my mum couldn’t pick me out of a line up.

Kind Light

May 20, 2021

The last leg of my walk yesterday and suddenly the sun, caught in the crack afforded by a break in a blanket of cloud and my western horizons, flooded my world.

As if whiskey light were being poured over me; the earth was tiger striped orange and black, and I imagined the sun hanging onto the last of the daylight for dear life: these last long fingers of brightness. I stopped still and drank in that golden hour. It was brief and beautiful.

It made me think of mum. She used to call this the Kind End of the Day. I was never sure if that was because of the light, or the sudden cool that descends on Africa, in that short hiatus between too hot, too bright afternoon and the cool gloom of dusk. I think perhaps both.  All of Africa’s sharp edges are knocked off then: it’s still just bright enough to notice her beautiful bits, but dwindling light has softened corners. We are all prettier in the absence of harsh light; younger and less tired. 

We would often sit on a verandah together then, share a beer and watch the light go, quietly, elegantly, aflame. Until suddenly it was gone and the bats and frogs and bushbabies had begun to sing and chirp and argue and shout.

‘Fancy another?’ I’d say lifting the empty bottle and Mum would smile, ‘Oh yes.’

Mum talks about the weather often when I call. But the conversations are muddled. My seasons are opposite to hers but she cannot grasp this fact: ‘Where are you again?’

She tells me about the weather forecast as if we share one, as if her rain will be mine, my sunshine brighten her day. As if I might even have had snow. Sometimes as she speaks she gazes quizzically out of a window. I watch her on my screen. Her head is tilted. I see the soft underneath of her chin, notice her hair is ever longer, even whiter.

‘It’s a funny old day today’, she says, ‘the sky is covered in cloud. And yet I can still see the sun. I wonder where it’s coming from’, and she laughs. 

It’s called optimism. That sunshine she sees. The same sunshine that rolled behind rocks, went underground, when she was sick with Depression.

I am astonished – grateful – it’s rolled back out again, that I can see this crack of it now before it vanishes behind scudding clouds that I know gather and bank.

I can see their blackness out of the corner of my eye.

The Shapeless Unease

May 19, 2021

I hate the plodding of time when I can’t sleep.

Like now.

Weeks of it. Of insomnia. Plucking at me. Pinching.

Just as I slide towards sweet oblivion, there it is. And I am tugged wide awake again and fretful and furious.

I lie into the small hours and read Samantha Harvey’s Shapeless Unease and I think hers is a perfect descriptor of this malady: Shapeless Unease: this unmoulding of me, in the dark. Where no form is distinct and where I feel, at my worst, as if I’m coming undone.

Sleeplessness is unravelling my sleave of care.

It makes for rows. My husband cannot understand that I do not sleep. Cannot empathise with my midnight wandering, the musical beds I play, dragging pillow, water, phone (for the sound not the screen: NO BLUE LIGHT!) as I trail miserably about the house hearing only the soft, enviable snores of others – him, the dog. I want to be able to sleep like the cat: anytime, anyplace, anywhere. The Martini ads of champion nappers; I feel his hot heft upon me. I listen to the rumble of his purr. It does not help.

I have done what the doctor said. No coffee. A light supper. Exercise (5 hard miles a day, up and down hills).  And no, definitely no screens. 

I push my earphones  deep into my ear and try to blindly scroll for a podcast to help me drop off. But my needing-to-sleep-self is fussy about its listening: no music, no high voices, no commercials. I need a low monotone. A lecture on physics would be good. One that runs for hours. 

Still nothing. 

I scroll some more, trying not to look at the screen, hunting the white noise app I downloaded. I listen to Rain on a Tent.

I give up. Reach for the light. Pick up Harvey, speed read as I flick through pages too fast. Looking for a solution. A cure. She has none. Time. 

In time this will burn out. 

If I don’t first.

I am trying to understand why. Why does sleep elude me.

Am I worried?

I am not sick. Or in pain.

Are there anxieties that broil below the surface of day that I can feel but not see, do I only feel their presence in the still silence of dark?

Is that the Shapeless Unease?

Blue for Devils

May 10, 2021

When I speak to mum today she is confused.  A medical complaint which has been addressed is causing her concern.  She does not remember the names of the relevant bits of her anatomy. She does not understand why the doctor has done what he has done, prescribed what he has prescribed. She does not remember there was ever a complaint. 

‘I had no problem until now.’

But she did. For months. 

I touch only lightly on that; nobody wants to be made to feel they are so forgetful they forgot why they went to the doctor.

Instead I labour next steps.

‘If this doesn’t help, mum, they’ll do that’, I try to reassure.

And, I continue, if that doesn’t work, there’s surgery, ‘but that’s a last resort, ma, nobody wants an operation if they can avoid it.’

No, she agrees, and then, indignantly, sounding hurt: ‘Thank you very much for explaining all that to me, that’s very helpful. Nobody has bothered to explain any of that before. Nobody is listening to me’.

Oh but we are, mum.

We have explained. And we are listening.

But you don’t hear. Because you can’t remember.

And all I can think today is that Dementia is a bitch.

*******************************

Last night I watched What They Had on Netflix.

I sometimes think I can learn something from these sorts of things: book and films that depict other people’s experience of all this. 

Blythe Danner’s interpretation of a woman succumbing to what mum is succumbing to made me weep. The same sweetly, softly, fraying falling apart. 

So I learned Dementia is a bitch for everybody.

*******************************

When I walk this evening the sky comes out in sympathy with my mood. Sinking and stormy.

And I wonder then: why is gloom called Blue. 

Because, I discover later, it is named for the 17th-century expression ‘blue devils’ after the hallucinations that come with severe alcohol withdrawal.  With time the reference was blurred, the devils disappeared and in their stead Blues morphed as depression.

Demens, for dementia, and devils for depression.

All I hear is demons.

A Lesson in Hope

May 7, 2021

Three days ago, I earned a writing commission on a paper I write for sometimes.


There is always elation in writing gigs. The money is rubbish. But the occupation is crucial.


Minding gaps, stuffing them chock full of words.


I took my commission into the ether, dragging it behind me, and filled it full of questions which I posed fast and furious to all the right people to gather the fat to hitch to the skeleton of my story.  So that it stood up under scrutiny when the fact checkers took it to task.


The next day the editor killed my story. It was too similar to one the paper was already running.


One was hopeful, one was not.  


It happens this – this pitching into a void or pitching and editors pinching your ideas and handing them to staffers or this pitching that comes to nothing. It happens alot. That was not the lesson.


The lesson was much better than that. 


Mum’s story comes as two halves now: a bad day, when her head is all tangled and knotted and she talks nonsense. And then one that is starling and bright and full of great conversation, a day that brings me hope.

 
Like the story I was going to write: a hopeful story about a hopeless situation.


Because otherwise how do you keep going?

W is for Walking

April 30, 2021

I listen as I pound. To podcasts.  The only time I suspend the chat is when I need to talk to myself: my phone is crowded with voice notes. Aide-mémoires. Ideas. I’ll transcribe them as soon as I get home. If I don’t, they lose context and are gone. Like the ideas you wake to at 2am and know they’re so good you can’t possibly forget them by morning. But you have: they’ve been sifted out by deeper sleep. 

I walk fast so that my dictation is punctuated by silences as I catch my breath. I live high up. On the edge of a mountain. So that the earth seems to spill away from me. In the evenings I walk until the sun settles itself into the saddle of a valley strung way out west.

Sometimes I imagine I’m at the top of the world. Sometimes my walks make me feel as if I am: recently I began to walk at dawn, nudging endorphins to the fore. I don’t know if it’s that which sets my spirits soaring or the tea afterwards? 

My dog Jip accompanies me. She wakes me to walk early and in the evening gets under my feet to remind me it’s time to get out again. Pavlovian dog. There used to be two of her. It took me ages to stop whistling up both dogs: ’Come on girls, time for a walk’; ages to remember I had only one. The first time it happened, not long after Pili was poisoned (‘nothng we could do,’ said the vet sadly) I cried so hard I couldn’t see where I was going. 

And Jip kept looking behind us as if to say, ‘Aren’t we missing somebody?’

We were. We still are.

Remembering the New Dress

April 26, 2021

Mum describes a rare outing in the car – for a doctor’s appointment in the city.

‘Was it Limerick you went to, Ma?’ I ask.

No, she says, ‘no, it wasn’t Limerick.’

It was. So I persevere. I never know whether I should – but if I don’t, if I don’t sometimes gently nudge to correct the slipping, the stories I want to tell to keep her tethered will have no basis.

‘Did you go over a bridge – cross a big river?’

‘Oh yes!’ She says.

That’s Limerick, I tell her.

Oh. She says. A small oh.

I swiftly pick up the conversation, to stop that sorrowful little gap, ‘I’ve been there with you, Ma, a long time ago.’

‘Have you?’

And there it is: my cue to narrate something of her broken past, my chance to remind her she was once whole and autonomous. An opportunity to remedy, briefly, some small part of this loss.

‘You took me there to buy a dress for Amelia’s graduation.’

‘Did I?’  And she sounds astounded – astounded that once there was the agency, the ability – to find her way to, around, a city.  And she sounds delighted, delighted that she could once do something for somebody. She could once drive me to the city my brother drove her to today.

I describe finding a dress after much searching, I describe taking it back to hers, trying it on again and realising that it was too big, it hung from my shoulders and dipped around my neck.

Disappointed, I took it back, with mum.  And whilst in the store, I nipped downstairs, to the sales racks, and there was the same dress, a size smaller and at a fraction of the original price.

Mum laughs at my story, now: ‘Oh how wonderful: that you found the right dress for less money!’ She can feel the small thrill of successful retail therapy again. I describe the lunch we ate in a cafe on the river, I tell her about the shoes we found to go with my new dress afterwards.

Mum says, ‘So much of my memory has gone, so much. I seem only to remember the sad bits.’

And I wonder what she means – sad bits: dad’s death? Her long battle with depression?

I tell her, ‘Mum, there were tons of good bits, tons, we’ll keep them safe for you, I’ll remind you.’

And she smiles, I watch her on my small screen, ‘thank you’, she says, ‘thank you, that would be good.’

The Whittling Away …

April 15, 2021

When I call Mum, I tell her it was her mother’s birthday yesterday.

I’m immediately sorry.

‘Oh no,’ she says, ‘I quite forgot.’

From the tone of her voice, the way she articulates regret, I know she is not sure, in that moment, where her mother is.  Ought she have sent a card, flowers? 

Quickly I say, ‘She’d have been 105, mum, she died a long time ago’.

And there it is, the prompt mum needs: ‘Yes, she died, about a year after my dad’.

Spot on. 

This is what dementia is like. It’s like lost pins. The are scattered and dull and blunt. Some of them have begun to rust. And then somebody holds a magnet close to them – and one or two of the pins suddenly lift and rise to the surface to meet the magnet’s surface. 

They find themselves those pins, they are still tack sharp and bright. But they are also rare. The memories: they are rare now.

She begins to describe where she lives. On a boat. Again. 

‘I have this nice cabin to myself now; the girl I was sharing with has gone. I don’t know where’.

My brother says the ship theme is increasingly common.

What is this? What is this perception of moving? Does she feel it? Unsteady? Unmoored?

My sister thinks it’s because she can’t remember moving to my brother’s. That she’s only been there a few days.

But that doesn’t explain the constancy of movement, the ship.  I would like to peel back mum’s skull and rearrange all the things that have become dislodged, tighten all the screws and put her back together again.  I would like to gift her back her past. I would like to do that with all my heart. 

She tells me she is very busy. She got it right today: She’s busy with the washing up. 

‘I’m in charge of washing up.  It’s good to feel useful’.

Yesterday she told my sister, ‘I am doing all Rob’s filing. I help him a lot with his business, you know’.

Today she told me she is responsible for selling things. A sales assistant, she said. 

Where do these thoughts come from?  She will have a nap after our call she says, after lunch, ‘providing I’m not needed, of course’.   

Is something she is doing reminiscent of filing, selling? Stacking plates in a dishwasher is not dissimilar to collating pages in a folder. 

Is it the feeling needed or the needing to feel needed that makes her say these things? 

I have learned this: dementia is not about a single change. It is not about who the person was and who they have become. There is no clear cut Then and Now.  No Mum with a Memory and suddenly Mum Without. Dementia whittles, whittles away cruelly. And unevenly. So that one day you are devastated by another lost bit of history, a piece of a puzzle kicked carelessly under the sofa where you can’t reach it.  And the next you are briefly elated because that precious part of her past has been retrieved. Briefly. Because briefly the memory magnet moved close enough to catch it.  

But it’s a whittling away. Always a whittling away.

There is less of mum’s story, less of her past, less of mum since there was this time a year ago. 

It is a heartbreaking, dreadful disease. I hope she does not know that.

Mum, Gran, baby sis and me off frame wrinkling my nose …

Keep Digging for Gold …

April 12, 2021

I feel as if I’ve been bowled out. I am hollow. As if some giant hand has scraped me inside out.   A windsock. Except one that hangs limply on a stagnant, listless day. I have lost direction.

These are hard days. When you need to keep pedalling. But it’s all uphill. No writing commissions to gear me up, speed me along. I write into a void.  Another personal essay. Which I will heft over my shoulder and solider on into the ether, touting my wares, talking myself up. 

Writing is a hard craft. And a lonely one.

I plod around the farm. Long, long walks. Jim and I. My earphones dug deep into my ear.

I listen to Elizabeth Wurtzel – she of Prozac Nation – she says writing is hard. Harder than doing law at Harvard, like she did, ‘any fool can be a lawyer’, she said, ‘but it takes real work to write’.

And I feel a bit better. For a bit. But it’s easy for her to say: she has both, a career at the bar and a book. 

I am on my fourth or 5th manuscript. My sixth attempt at NYT Modern Love. 

I’ll stand up in my seat and bear down harder.

What else is there?

*****************************************

I miss my children deeply. An ache. I touch my fingers to their faces in photograph frames and I wish, as I have wished a million times before, that I could have bottled the best of their early years so that I could splash the memories on my wrist as scent.  And then I could have inhaled deeply and felt the essence of them, been soaked by it. 

I tentatively make summer plans, scheme escapes, plot quarantine conduits so that I might get to them. I feel like I’m hatching some covert mission.

It shouldn’t be like this: seeing your kids shouldn’t be this hard.

******************************************

Today when I called mum she told me again, ‘I am certain we live on a boat; we go from place to place every few days’.

My heart cracked loudly. So I disguised the sound with laughter, ‘oh mum, that’s funny: at least it’s never boring – you’re on the move during the time of Corona when nobody else is?’

Except then she said, a little sadly, ‘the view never changes’.

What dreadful unmooring must be happening in her head. 

Perhaps that’s the biggest reason I’m feeling empty: mum is moving further and further away.

******************************************

My early morning walk and a perfect, perfect rainbow. As if it had been cast by some celestial civil engineer, a bridge across the sky.


And I looked up and I caught it, caught it before it faded with the sun and was snagged by the wind to nothing.


Whatever it is I’m after, perhaps it’s in one of those pots of gold?

Have to keep digging …

Dad’s Tree

April 7, 2021

When I sit beneath the acacia, which shades the cottage verandah and frames distant Kilimanjaro and which is bedecked with weavers’ nests which hang bauble like from branches, I wonder if dad sat beneath the same tree.

‘How old do you think it is?’ I ask Ant.

‘Oh’, he says, ‘at least fifty years, probably more.’

And I am satisfied. I am sitting where Dad has sat.

We are in sprawling Tsavo West with its long tipping views that stretch to wrap huge mountains and greedily gather up great handfuls of spilling plains. We are staying the same bandas I stayed in as a child.

I sit now, beneath Dad’s acacia, watching my mountain view – back to front here for I live on Kili’s Western edge and so my perspective on it is slewed from this position. And  I chuck bread crumbs at the starlings and sparrow weavers and hornbills which cheekily beg. They come close and nag loudly, ‘more, more!’ They shout. 

As a child I sat motionless on the steps of the same verandah, a Hansel and Gretel trail of crumbs carefully and temptingly and strategically placed in the hope I’d draw a squirrel in – for they scuttle  about here too, skittering nervously looking for scraps which they dainty raise to their mouths to nibble with two front paws. I wanted one as a pet. I wanted one so badly. When finally, after patient hours, one grew so tame it took crusts from my fingers, I imagined myself as some Dr Doolittle protege, conjuring conversations with wild animals.

When I get back home, to the right side of the mountain, I write a letter to mum. I describe the views, the camp, the squirrels and birds. I describe the elephants, the leopard we saw, the storms that rolled in and charcoaled the heavens black and then rolled out taking the rain so that they left the sky watercolour blue and the road wet – so wet we watched cheetah drink from puddles and whole herds of elephant wallow in them.

I paint as vivid a picture as I can. Huge, Technicolor brush-strokes; I hope my words will colour in the blanks. 

I hope she will remember something. Something of those precious, faraway long gone days. Of my back-to-front mountain view. Of the nighttime whoop-whoop of hyenas. Of the greedy, chattering birds. Of hurricane lamps and camp fires. Of dad taking us on safari to exactly the same place when we were little.

But it does not. She remembers nothing.

By lunchtime, when I speak to her, she has even forgotten the letter I’d written her which she read with her morning tea. She could recall no part of it.

So she did then what she has begun to do when gaps present; she changed the subject: ‘Will we see you when you are over here?’ She asks, politely.

‘I’m not over there, ma’ I say, ‘I’m still Covid-captive over here.  But as soon as I can get over, I’ll come and stay and we’ll go away somewhere. In the summer.’

But will we? Will we really?

There are so many variables. So many marbles beneath my feet.  I don’t know when I’ll get over there, to see mum. 

I don’t know if she’ll know me when I do.