Firstly some poetry. To Uplift. I am so grateful to William Sieghart for his Poetry Pharmacy books, and to my local bookshop in Wadebridge, here in Cornwall, where I found my precious copy. (We're lucky to have a bookshop, and must support it.) Life saving poetry for when you are too traumatised to read prose. Here is one that makes my heart sing. The Peace of Wild Things, by Wendell Berry When despair for the world grows in me and I wake in the night at the least sound in fear of what my life and my children’s lives might be, I go and lie down where the wood drake rests in his beauty on the water, and the great heron feeds. I come into the peace of wild things who do not tax their lives with forethought of grief. I come into the presence of still water. And I feel above me the day-blind stars waiting with their light. For a time I rest in the grace of the world, and am free. Writing feels vital to me. Like breathing.
But easy to take too seriously. The fear has returned and I am lost in doubt again. I am battling a feeling of intimidation/a fear of not being clever enough. In the last four months I have written four newsletters and not published. I wrote about our trip to London to see James' painting at The Royal Academy, the pride, and the unbearable heat that day, (streets with no air, no escape) 19th July. In another I returned to the notion of my old self/new self; writing about old self looking for James, describing how new self takes her to the cemetery to show her where he is. I've written about the joys of making compost, the natural cycle of life and death, and returning to study more horticulture. Finally I've written about the strength and inspiration I am getting from my bereavement retreat Whats app group chat. I've now got so much I feel totally overwhelmed and the old voices are saying, who do you think you are? Why would anyone want to hear what you've got to say? Stop typing and clean your kitchen. But here I am, kitchen still filthy, James' room still untouched, and hopefully going to publish this one. Just to feel I belong with everyone else, connecting and sharing. It's sad how easy it is to invalidate ourselves. Hopefully, soldiering on without James, I can summon his spirit of bravery. I urge anyone to pick up a pen and just write it all down, away, out of your head, your muscles. Words lie heavy. Don't let them. After a good fierce scribbling I feel the way I do when I walk out of a therapy session, a million times lighter, with some room to move, and create more life. A close friend of mine, very close to James, is not someone who writes at all. But she now writes letters to James all the time and she finds that it helps. To address a person that you miss is very cathartic. Simply writing - Dear James, I love you... makes me feel close to him. Here is my attempt at poetry. Found this in my files - must have been tired that day. I am Achieving! (all over the place) Yes, You’re achieving Yes! I AM ACHIEVING You're needing to be achieving Can't sit still - needing to be achieving BUT I feel like I’m doing more towards feeling like I’m thriving Am I thriving? Well, you're trying I am so tired from trying, I am crying but I’m needing more, more, more… More what? More of something, anything, More needing? Or more achieving? The tiredness is very wearing, my skin feels thin, like it needs darning Have you thought of stopping? Terrifying. I feel empty and full at the same time But You’re Achieving! (but you’re so tired, you don't know what the hell you're doing, or what you're needing.) You're keeping on needing to be achieving and you're feeling like you're thriving but you're still crying... Is this thriving?
11th October 2022 Today is a very important day! Our story will be told... This is where I connect. This is where I can hold this enormous loss and feel less alone. Thank you for remembering James with me.
After two weeks of migraine and now vertigo, the ground is like cotton wool beneath my feet. Tiny crystals in my inner ear telling my brain I am moving when I am not, I am clinging on to my gravity with feet gripping the floor. I am taking on more gardening work, this is my saviour. I will never tire of being on knees with my hands in the soil, plugged into the earth. I am also doing my college homework; learning this week about soil horizons, the importance of Humus in the soil; the essence of life; what is left after the decaying is done, basic chemicals of life, a rich dark substance. Life is full and fast and fuelled by the ache of the longing to smell my son.
I also have to write a proposal for my memoir to send to an agents. I have found an agent willing to read my first 50 pages. Motivation is wonderful.
I want to swim in the sea today, cook, write, move shrubs, see friends, want to do it all. All this listing is bullying my body, all my organs feel beaten up and dragged along. I need to rest. But I can’t stop.
In order to do get stuff done I must at times disconnect from James, from my heart. I must be numb, monk-like, dispassionate, simply getting stuff done. I know all the emotions will come back swimming back to me when the tide comes in, when the moon is full and I am ready for the waves. This is all old news but what is new is that today is a very important day, today the 11th October. After years of emailing professors, journalists, clinicians, we have finally found someone to listen to our story, someone who wants to learn about the medicinal use of cannabis. I am suddenly aware that I have not written publicly about giving James cannabis. For nearly four years it was our normal, our everyday. All our friends and family knew and supported us. It is a very long story for another day. I have written a book about it and I am trying to get an agent because I am furious that people are not being prescribed it for all manner of conditions. I am no expert. The doctors are not interested in anecdotes. But I know that my son enjoyed years of thriving on it. If an adult with a brain tumour lived for three or four more years than predicted it would be seen as giant leap forward, a huge success. Because our child died we feel like we failed. I am writing the truth to challenge that feeling of failure. We must be proud of what we did. I want other parents to have the hope that we got from cannabis. I have been to afraid to write about this until now but the time has come.
Anyway, more on that another time. As I was saying today is an important day. Two weeks ago I typed into Google, children, cannabis and cancer. I don’t remember why. Maybe curious to see if there has been any progress. I found an article from Cannabis Health by Sarah Sinclair calling for parents who are giving their child cannabis, to take part in a study, to share their story. I emailed them straight away, certain that our story would not be of interest because he died. But today we are doing an hour long interview with Matt Hughes, the co-founder and director of MedCan Support and Sarah Sinclair, the managing editor at Cannabis Health. Matt is giving his son cannabis for epilepsy. He was having up to 100 seizures a day but is currently have 0. Sarah is going to write an article about our story. Medcan is a research organisation in Canada. They are asking for parents who are giving their children cannabis as a complimentary therapy to cancer, to come forward, anonymously if they wish. But we don’t wish to be anonymous because we are so proud of what we did. We hope that one day children will be prescribed with cannabis. When you have no hope and nothing to lose you do anything to try to save your child’s life and stop their suffering. Cannabis made James, hungry, happy and sleepy. What more do you want after radiotherapy? James did not once have a single negative experience with cannabis. For three years he was not sick, not once did he have a high temperature, bloods came back perfect every time. Doctors were amazed by him. He was superhuman. This is what my book is about. It is now ten to midday, ten minutes to go until our zoom call with these people who we have been looking for for a long time. We are nervous, and apprehensive about talking. For four years we lived in hope, in secret, winging it in the dark, breaking the law, doing our own thing. The magic of Cannabis gave us that hope. He was given less than six months to live. He lived for four years.
I will let you know how the interview went and where you can find it.
In older news
Been pouring over this draft for three months now, on and off, lap top open, shut, open, shut. And suddenly I thought, who cares, what does it matter if it’s littered with imperfections? Have I really got to drain myself to impress, to ensure that people think I am good enough, clever enough? What’s this? I’m either having a good day or a bad one, can’t be sure which? Sounds like giving up a bit, I guess. but this is my news, I am tired of trying to be needing to be achieving. Must stop soldiering on when my body is screaming , REST ME please. So ahead are, no doubt some half finished topics, but life is full of half finished conversations so I am hoping you’ll forgive me, and not judge me for my laziness. I just need to get all of this away from me. Here it is, months in the dithering, imperfect.
James Edwards Date of departure 25th March 2021, now 18 months at peace in the wild, free spirits together forever
I dared to un-hide the Green and Blacks chocolate powder from the back of the cupboard the other day. It’s been there all along of course, hiding behind the good intentions of green tea. I got it out and then made my first hot chocolate without James. I felt very brave. Lots of deep breaths. I felt a bit numb. I’d always rather be crying than numb. But I did enjoy it. It was warm, rich and comforting. I think I’ll make it a ritual to have one on Saturdays. Here is a photo I took in Rock at The Blue Tomato Cafe. We have not been in there yet, without him. He was looking at the boats on the water, across to the Iron bridge on The Camel Trail to Padstow. Notice the napkin! He loved a napkin. So creative and yet didn’t like getting mucky unless it was paint
It’s October the first. Mild, calm, I’m still cutting dahlias, putting them into vases listening to how Putin is losing and Liz is confusing. We’ll never be sure of anything, so why do we bother listening to all this noise in the news? Because we are human and we can’t help wanting to connect. Anyway I owe you the second half of a hard lesson in planting spring bulbs, a story about birds knocking on windows, promised in my last newsletter months ago. Summer in Cornwall makes writing hard, concentrating impossible. Our lives feel so different when we are full up on people admiring the beauty of this county. I was telling you about that big fat gull at the window, tap tap, rat a tat tat, do you remember? I’ve entered it into a memoir competition now so I don’t think I should publish it here. The memoir is about giving our son Cannabis
Have you ever read much Dr Seuss? Especially the one called The Places you’ll go. We read it as James’ coffin was tucked into Mother Earth’s Bed.
Oh wow, how I love it, The Places You’ll Go. MY silly half-adult half-mad cow brain - she started reading James The cat in the hat, and all the other Suess stuff and it was just too, whoa, out there, nonsensical. I was like, what is this? just words strung together, my brain couldn’t take it in. I’d never read this stuff before. I’m lying there next to him I’m tired, I want him to be asleep, I want me time, time out, wine and dine time and I am willing this boy to sleep, but he knows, he’s not stupid, ‘she wants me to be asleep’, he’s thinking. and the clock is ticking, i can’t keep my eyes open, he elbows me, Mummy, wake up! and so I begin again, (sorry James,) again, forcing this stuff out of my mouth about scrambled eggs super de booper, eggs and Sams I am, I am sam, I am TIRED!!! and eggs and green ham, cats in hats talking to fish in Tea pots, thing one and thing two - they’re wrecking the place, it’s a mad world, I can’t take the madness—But James? JAMES gets it, he’s smiling, he’s listening… or maybe the point is that he’s not trying to get it. James is sucked in by the rhythm, by the fun of this writer’s soul. After a while I fell in love with these mad stories, these sounds, they are the music in my memories. And Hairy Maclary’s daredevil dash of course from Donaldson’s Dairy, I will treasure these books forever.
I wasn’t sure what to do on James’ death day. Like a birthday it marks the start of something. The natural cycle of life is dependant on death. Perhaps grief is learning to love your loss, falling in love with death, and saying YES, yes, Helloooo, I was expecting yoooo, come on in, sadness, melancholy, we’ve got your room ready. blah, blah, what the hell is she going on about. What I am trying to say is, had a pint or two, but, this state you are in, it creates your path forward. Jump on, take it, don’t think just see where you end up. Before James came into and left my life I lived in warm generous blanket of love and loans and handouts, handmedowns and i-o-u’s. But now no amount of spoiling will take away my pain and I am as I sit so snug beside death, only now, do i know what it is to live. Only now do I know what kindness is. When he left his body, as he said goodbye, he set light to a rocket up my arse, five Catherine Wheels, and the whole shebang bonfire. I am not gonna lie, I will not dry my eyes, but I’m beginning to think of death not as a singular moment to hang on to, but as a blooming period, a life affirming thing that evolves and creates. I am living his death. For we can have one with out the other and this can create a liberating YES! moment fearlessness. What is to say that a death can’t be lived as well as a life can be lived. I must love his death as I loved his life. I know this all sounds like I have lost my mind and grief is a kind of madness but I have to pump myself up, like a flat tyre, in order to keep going, I need to fill myself with this kind of air, air full of hope, spiritually infused positive stuff. What is death but just five letters arranged in a way we have been conditioned to fear. e t h a d/ hadet/ adhte/ dthea/
If you are trying as I am trying to make sense of death, of absence, of a person, so HERE and all of a sudden not being a person, but being a memory, you are permanently puzzled, where did they go? He was right here next to me. His new front teeth were half way down, for crying out loud! At least them arrive—but no, life aint fair and that is that, death is death, death is not like this or that, death is death and that is that! I’m hoping if I write it enough it will lose its darkness. (Not working yet but it will ) Anyway as I was saying if you are as I am, coping with loss (or maybe just afraid of how you might one day cope) then you might find comfort as I have in the loved labour of compost creation. Take what seem like piles of crap and nothing and watch life happen. End of life is fodder for another. I’m enjoying the daily gathering of treasure for my compost: collecting the leftovers of life to pour goodness into new life; sweep the floor (soon this will be stuff to paint and draw) - in it goes; empty the cafetiere, (what if I drown the bugs down there?) beard trimmings, (not mine) ash from the fire, newspaper, egg boxes, a ripped cotton shirt, empty egg shells add texture and are calcium rich, but wash first if you don’t want rats unless you have cats or crumple them straight on your beds (not nice for the belly of a slug) Next, brush your dog, or cat or yourself - comb contents - it all goes in, this is the concoction of all things that were once living and are now fodder for the next cycle of growth, new things enriched - abracadabra, you’ve made it yourself. Time to go back inside for another quick cry and then off to the garden centre for pretty things you don’t need but can’t resist.
I am back at the Duchy College in Camborne to complete the diploma in Horticulture. We are learning this week about soil horizons. Horizons under our feet. I like that thought. Here, immersed in the language of horticulture I am right at the heart of new beginnings - young growth learning to suck up moisture from below, learning the requirements for successful germination, the cultivation of soil, (the rhs now moving away from cultivating instead allowing nature to the work so as not interrupt the worm work, etc. (Look the No Dig theory if you’re interested. gardening is getting lazier and lazier and I love it.) the need for balance in air flow, light, warmth, nutrients, here - you can’t help noticing how similar we are to plants. We all need to nurture our environment, we need to connect to signs - a wilting sensation, a hunger inside, and where we are now — a need for dormancy — like the September light, we don’t want to give in… But, we have no choice. No choice is the easiest way.
On Gardeners Question Time (GTQ on radio four) a caller asked the panel, ‘Why do we use all these different composts. Nature doesn’t need them, so why do we?’
I stopped for a sec with the soap suds and scrub, and I thought, good question! What was her answer? This was brilliant. She said, in so many words, As you walk through nature, you think isn’t this all perfect and beautiful. BUT what you are looking at is the survivors. A lot has been lost along the way.
I was overcome with a warm prickling chill. Look at us all, standing here, we are the survivors! Aren’t we amazing. Look at us - The House on the Hill at the RA!
My son James Edwards, the artist
Finally just to say, got rid of the vertigo. HOORAY! I rang a local acupuncture guy at Medella Heath, Wadebridge, lovely man, could have just made me an appointment but he told me about the epley manoeuvre, try that first he said. I watched a video on Youtube and it’s gone. What a lovely man. It was really getting me down.
Blessed Be. The journey is so hard sometimes.
There is soooo much to love and admire here Jess... It makes me want to do something about it but I'm not sure what! Vxx!