[COPY] Fond memories of the darkest place on earth and the best hot chocolate ever

Snippets from This Boy, a memoir, and some great art by James

I was there, watching him, with him

Making Medicine

Extracts from This Boy, a memoir:

(Just because it’s not a tangible book you can buy on Amazon, doesn’t mean it doesn’t exist. The story of James is here, written, saved.)

I have fond memories of the darkest place on earth. Sometimes I long to go back to the safety of Sam’s House. The truly wonderful charity accommodation from Young Lives V Cancer. You arrive, having be ripped from your old life. Sam’s House is your worst nightmare and your sanctuary. Once you accept you belong there, you don’t want to be anywhere else. How could this place have set up a home in my heart? It was the worst place in the world. But when you are there, it’s the only place you want to be. It means you’re in care, having treatment. You’re on a mission. You’ve got a schedule: Get to radiotherapy. Get back, job done, now time to just exist. No normal. No trying to be in your old life at home. No one popping in. You only have to do the minimum. So you lie down and search the internet for hope until you believe there is some. You find something. Eat, sleep, repeat.

I’ve named this photo Pants. I remember this so clearly. James’ first ever BIG BOY PANTS. Look how pleased he is with himself. I took this in Sam’s House December 2018 during James’ six weeks of radiotherapy.

2017 - Two weeks after diagnosis

Life only shines this bright when it sits next to death

I want to tell you about the hot chocolate, about the first time we gave James cannabis oil. I want to tell you about those days of hell and nights of being high. I want to tell you everything because it’s all sitting inside me and if I don’t share it I’ll explode. So, me, my husband, and our two year old began a new life. It was simple. It was impossible, magical, surreal. It was so fucking hard, and yet easy, because you only had to survive. All that other stuff you once filled your days with - mere fluff that we take too seriously - all that was gone. You are no longer pondering your fulfilment, your ambitions, your style, your next holiday. You are no longer asking, who am I, what do I want? You are close to death, you feel your heart thumping inside your chest. You are alive, but only just, and yet more alive than ever; you are in the thrill of the chase for life, like a gazelle on the run from a pack of lions. You want life like never before. And amongst all this JAMES had changed. He just looked different. Or had I not been REALLY seeing him before. He was bigger. He was glowing. His eyes were blue pools to swim in. His voice, his smile, ran through me like a sparkling stream.

It was three days later - after the phone call with an old friend about the cannabis oil supplier that he knew - we were still in our first week at Sam’s House.

The post had arrived. It was early evening. Simon was using scissors to cut into the tightly wrapped package. Layers of tape over tape. The capsules were inside a vitamin pill bottle. Recycled by the dealer. I said to Simon, ‘Why don’t we melt it into a hot chocolate?’ We were whispering in our bedroom. James was playing on the landing with Phoebe, a little girl whose older brother was having a bone marrow transplant. They were having a lovely time together. Bossing each other about.

‘Great idea,’ Simon said. ‘I’ve got to try it first, before we give it to him.’

I smiled. ‘Oh no! I’m sure you’re gutted about that. Are you sure you don’t mind?’

‘I think I’m alright with it.’ He grinned and swallowed a whole capsule…

The capsules were filled with a murky green substance. ‘What if he gets psychosis, or something, you know, when he’s older?’ I asked Simon.

‘Well, he’ll be older. And you can treat psychosis.’

We’d been told us to pull the capsule apart, squeeze out a quarter of the oil, start off with tiny amounts. Build-up the tolerance, slowly.

He said, ‘Stop worrying, Jessica, It can’t hurt you. It’s just a plant. What’s the alternative? To do NOTHING?’

An hour later Simon's eyes softened. He was off, and away, somewhere, lighter, and up from down, and so much easier to be around. Cells were sitting back, his heart unjammed. He was not so manic, I felt calmer. He was hungry, he was smiling. I opened wine, crisps. He had a beer, asked, what shall we have for dinner? We had the TV room to ourselves. Curtains drawn, a lamp on. Put Cbeebies on. As it said in the hall downstairs, Sam’s House - a home from home.

‘James, do you want a hot chocolate?’

‘YES PLEASE, Mummy, please…’

He’s got a nose like a hound this boy, will he drink it? Oh, This Boy! Give me a whole ten chapters just to tell you about this boy. He’d sniff it out, I thought, he won’t drink it. I made the hot chocolate, a special CancerPLEASEjustFuckoff Hot Chocolate. Pulling the capsule apart I squeezed one quarter of the stuff out. It was like soft butter. I stirred it in. I gave it to him…

OH MY GOD, Simon, look, it’s empty, he’s drunk it, he’s drunk the lot...

to be continued… in my next post.

Sarah Sinclair’s Article in The Telegraph

The article link - 'We grew cannabis illegally for our son, it gave us hope when there was none'

A few chapters later

2023 - Drinking in the Green

I am tackling the nettles in my borders, pulling up networks of creeping rhizomes. I am on my knees amongst the raspberries, going down the rows — fighting with distractions, roses adjacent, dead wood begging to be removed. I am in the large garden of a manor house, 7 or 8-minutes’ drive from home. I keep stopping to squirrel away sentences into my phone. I can feel James, in the air. His presence overwhelms, makes life full and loud. His eyes are mine. The way I feel my way around, gardening by instinct - that’s him. He’s the magic, pouring green into foliage. Painting apricot petals. Here in this cacophony of life and death, the essence of him dances around me. In the next border I spot the peonies, their drying dead-heads. I’ll go there next. I’ve had to ask Henrietta to structure my days, give me goals, because I can’t concentrate. I must complete rows.

It turns out getting gardening work is easy. I’ve studied hard. I’ve learned plants and soil types. I’ve passed exams. And now, it’s as if all these new people in my life, their gardens, my college classmates, Jane and Jax who I work with on Wednesdays, Fee and Henrietta, it’s as if they were all waiting for me, right here on the pretty margins, in their flower beds, here all the time, ready to catch me. Minds alike. We love to get warm in the cold and then, time to pause, we sit in our layers, giving our backs a rest. We love dirty gloves holding cups of tea, we love leaning into bushes, kneeling in the mud, cutting flowers and taking them indoors. I’m certain somehow, they were always there, here. I’ve met them before, in another realm, in clouds, in dreams… because these people are my people, from another time. We share paths, and maybe molecules destined to be reunited.

I have three clients now. And am collecting tools. My own tools. Favourite – Japanese Hoe. Least favourite, loppers – can’t use without engaging my neck muscles. My neck is fatigued. it’s the gateway between heart and mind. It’s holding everything together, holding up my heavy head. Like stems and trunks, we expect so much from our necks. I am unsure of this strange confidence. It’s growing in me, branching out, but I am a stranger to myself. I can walk into a garden and see where I am needed, feel the needs of living things. It’s clear that I am crap at growing in straight lines. I don’t think vegetables are my thing.

When I’m in my writing mind, but not writing, doing other things, like planting or digging, sentences come, trickling from the heart, throat and tongue; sweet, bitter, soft and prickly, like a blackberry amongst the thorns. All things must coexist. The mingling of colours and smells beg to be noticed. I want to explain, describe, get inside of light, dark, shapes, textures. Commas litter my scalp. Exclamation and question marks hang like earrings from lobes. Letters string themselves together like daisy chains, like dew-soaked spider webs, perfect lines, rectangles, triangles in shining frames, built to catch light, to turn the gold of the morning into silver. Moments jab, like electric shocks, and between the words, under the lines, I am always asking, where is James exactly – somewhere amongst invisible things; things I can’t put my finger on. But the searching keeps me moving and I’ll search till I’m going to ground, until I am ready to rot.

I am greedy, needy, roused by novelty and convinced there’s something in the air, something that I cannot see. The questions never end. What is the essence of this thing or that moment? What is happening here? And, never happy with a thing just being a thing, I’ll be suspicious always, never certain of what I think I am perceiving. With a child-size hole in my heart I am slow on my feet. Going down the rows, focused on the bullies – nettles and brambles, sorrel, dock and that bloody creeping buttercup, I can carry on if I just stay here, one weed at a time. A robin visits, a bee passes by. I am watched. Guided. Guarded. Never alone.

Be Five, imagine you are five years old - DO NOT THINK, just draw, be free, be your self

Being immersed in all this, I feel him, remember how he was, and that feeling of when we were making the cannabis oil. I didn’t have it for myself often. It was too precious. But sometimes, when I wanted to lose myself, I’d have the tiniest bit. I knew what it was. We’d grown it from seed, tucked it into organic compost, fed it organic feed, cropped it, dried it. A while later, the racing stops; minutes bloom, stretch out into swollen moments, enormous, full and bright. It brought a beautiful focus to my mind. Too much of it was not pleasant. All you can do is ride it out. But the perfect amount, and I could concentrate for the first time in my life. I could sit with James and paint for hours, only moving to get clean water for our brushes.

If he’d have lived, I wonder, would he have been a terrible overthinker like his mother? Too sensitive. Too lost to keep up; a feeling of being too big, too small. Would James have grown to feel the way I do about the colour green - feeling full up on just one glance?

Green is a colour that you swim towards, mop up with your skin, drink in, and then swallow. I am always thirsty for green. Like smelling rosemary on a warm day. Or brushing past soft drooping branchlets of conifers, walking on wet grass, wearing an emerald silk scarf. The low-growing scramble of brambles, their leaves, a blackened green, leathery. You don’t just see green, you ingest green; it fills your fingers, coats your throat. Green becomes you. And then, making space for more shades, you breathe it out again. James knew green was my favourite colour. I heard him telling Eileen, our neighbour, over the fence. ‘Eileen, Do you know, Mummy’s favourite colour is green?’ He’s wearing a shirt and tie again. Or is this just how I picture him? He loved dressing up.

‘She likes green, does she? That’s nice. I love green too, Jamesy.’

‘Do you?’ He is thinking about that. I am watching him out of the window, his quizzical expression. I can hear in his voice, the oil taking effect, words catching on slow waves, deeper, firmer, thicker. His bare feet are sinking into the grass, overdue a cut. Eileen’s strong cockney voice, like she’s just left London even though it was 35 years ago, Jamezee. Jamezee. Small birds are on the feeder. Robins and wrens are singing in the bushes. The sun is on his back. He looks like a king in his castle. He is engrossed in this simple exchange. They have each other’s full attention.

‘And what’s your favourite colour, then, Jamesy?’

‘BLUE.’

There are places for more muted shades of green, with grey or blue undertones. Sage, Eucalyptus, Lavender. They are cool and fresh but sometimes just not enough, as though I am empty, too thirsty, undernourished. I can see James, the sun coming in, reaching for him, bathing his soft skin, he glows; HE IS GOLDEN. He’s mixing his colours on an old China tea plate, charity shop China. Like James, the ancient plate has lived many lives before, I am certain. Now it’s a palette. Primary blue and yellow, swirling, a melting marble. He was there, in the same room as me, right there. I was doing other things, avoiding cleaning, stepping over dirt, boiling beetroot, feeding the dog, roasting pumpkin to make soup, toasting nuts to graze on, stirring porridge. James was there, just over there, not ten steps away, a master, brush in hand, making greens… he was doing one thing well. (I was doing lots of things badly.) A good green takes your breath away. And then every time you fix your eyes on it, it keeps on taking you by surprise; it grows on you, into you. These rich shades possess an unreachable depth. A complexity like the shifting light on a sparkling ocean. You keep trying to pin it down, but you cannot be certain of its character, whether it is warm or cool, dark or bright, soft or hard? How can it be all these things? It’s the colour of the surface of things, glistening aquamarine pools in inlets, pea soup with a swirl of creme fraiche, morning dew on spring leaves, high tide in the deep harbour, the shadows of the boats.

A Wall of James