Fitting

On my way to deliver a workshop, I stepped into the wrong underground train yesterday. I had to go one stop back before getting on the right one. I was only five minutes late. Not too bad. Last week I got on a bus heading in the wrong direction in very heavy traffic and after quite a bit of confusion and plotting in snail speed, I ended up taking a much lengthier journey home. I also spill liquids over surfaces. Charity shop clothes I buy don’t quite work. They are the wrong colour, shape, size or length. Shoes arrive in the wrong size. As do the rings. We make them work by KS wearing his on the index finger of his right hand and mine is on the middle finger of the left.

We did a hand-fasting ceremony on 1 May 2007. This was incidentally the same date we recently heard about his prognosis. Back in 2007 we were on a Buddhafield team retreat. After KS came back into our tent during the night, he said: “I smell May blossom in the air. Let’s get hand fasted.” We did. I was delighted. We jumped over a broom stick under a big oak tree during a hilarious and magical ceremony on Buddhafield land in Devon. The whole gathering, including us, dressed in clothes from their dress-up trunks.

We were legally married during the winter solstice in 2011. The proposal came over breakfast. He suggested it at the table before putting a spoonful of porridge in his mouth. Let’s get married. And so we did. We were so pleased on the day of our very simple wedding. We never had rings. But a month ago I was talking to a friend who had been ring shopping with her fiancée. I told her I had wanted a ring but KS could not see himself wearing one. He just didn’t like wearing a ring. I felt it didn’t make sense for me to wear one if he didn’t. What it came down to was: I had wanted one, but didn’t push for it. I told KS this story when I came home. He said: let’s get ourselves some rings. And so we did. Unfortunately when they arrived yesterday we found they are slightly too big. I do not know how that happened. But we make do. And who cares it is on the wrong finger. There is no engraving on the inside, but on the outside there are radiating suns. Suns coming up and suns going down. This seems symbolic. And this seems to be what matters most. The thought of it. The gesture of it. The connection. All a bit clunky, but that also seems fitting.

About to jump over the broom stick, both in our wellies, 1 May 2007.

Pondering

What would I do if I knew I only had a few months to live? The answer is impossible, really. How can this not be a theoretical question? I am wondering if my life would take a different direction. There would probably be things I would stop doing. But other things would just go on. These kind of questions about doing don’t lead me anywhere. They make my head spin and my heart revolt. As with every other situation in my life, I think the main thing is to address my own mind states. That is the main preparation for me. That is what I do before I give a presentation or workshop. Before I go into a challenging meeting. There are lots of practical ways to prepare, but those do not mean anything if I do not meet my emotions.

I am gently feeling into my body, encountering rushed energy, aching contraction and today also a strong hint of skepticism. This is somehow expressing itself in the poise of my head, the frown in my forehead and lips more tightly pursed than I feel comfortable with. I feel into all of this with friendly interest. Then more clarity comes. I find myself pondering, hands clutched, elbows pressing into my side. It is as if I am praying. The knuckles of my thumbs pressing into my chin. There is definitely some pondering going on. I scan the room, unseeing. Attention drawn by small signs of life: a bird flying among the trees in the distance, a helicopter, the sound of an aeroplane, crumbs on the table, washing drying on a rack. Small signs of life. In no particular order. Life itself happening when I am not really noticing it. The crow outside agreeing wholeheartedly. A footstep on the stairs, a slammed door, a window rattled by the wind. Voices. More life. Life is not lived by pondering, it seems. It is just happening. Keeps happening. Until it stops.

KS at Sainsbuy Centre Sculpture Park, April 2021. The museum itself was not open because of pandemic. Bronze sculpture, ‘Head’, by John Davies, 1997.

On the surface

KS has some sort of chesty thing and I am completely lacking in energy. So we are taking it easy today. It feels my heart is hard at work. I have not been sleeping well. Falling asleep doesn’t come easy and then I wake up far too early. I am too alert in the night. Listening to the irregular rhythm of his breath. Being worried.

I have had some lovely meetings with friends this past week. Walking in parks and sipping oat lattes. And on my way to these meetings: reading on busses. Doing some work in between. So it is an unpleasant surprise to find myself so very tired today. I am also bored. Which could be interesting. Something will always come. A spark of something. A small incentive to write a few words or to look something up.

In the other room KS is trying to do some writing. One of his projects is separating the wheat from the chaff in the diaries he has kept over the years, often during his numerous retreats. He has a vast amount of notes on his computer. I have lots of diaries too, both on my laptop and a box of handwritten notebooks. Occasionally I search in my digital diaries for certain episodes, phrases. Wondering how things were at that particular time, how I was feeling and what I was thinking. And every time I do that, I can get lost in reminiscing, hopping from fragment to fragment. Rediscovering lost thoughts. I can barely imagine what it would be like to somehow curate the whole body of my writings. I would be completely overwhelmed. Half written books, forgotten poems, notes, articles. Traces of the life I have lived so far. That part of life that has been recorded, reflected on. How to value those thoughts from the past. Are they still relevant now? Is there something to learn, to be kept and treasured?

Kamalashila told me he used to have a pile of notebooks. One for each year. There was a year around the turn of the century when he gave most of his possessions away. He gave his diaries to a friend. I am not sure how it happened, but these diaries were burnt. Only one was left. The 1976 one. I read it ages ago and it made me smile in places. Like how KS felt he needed to do more yoga, the same way I have heard him saying it time and again over the years. How he sometimes felt dull. I could not relate to that word ‘dull’. But perhaps it is a bit similar to how I am feeling now. Lacking in spirit. Slightly bored. Not much happening. On the surface.

Here is KS doing some post-meditation yoga, looking slightly weary.
St Leonards-on-Sea, mid May 2017 and just after his MS diagnosis.

Cartoon Living

During the week that Kamalashila was in hospital at the beginning of April, my brain seemed to be working overtime. It had to process all the new pieces of information, was running through the implications and was projecting outcomes and scenarios. In the mornings I would experience strong emotions. The afternoons were spent in hospital with KS and the evenings were frankly for zoning out, zooming with friends and finding some peace in the bathtub. Kamalashila was considering pulling what he called ‘a David Bowie’. This would mean not revealing that he had cancer and just continuing life until he died. I do not think he was hugely serious about this. But at the time he didn’t want anyone to know about the tumour and the seriousness of the situation until he had processed it himself a bit more. So this scenario didn’t happen. He decided to share wide and far.

I had my own scenarios running, as I wrote before. In retrospect it struck me how cartoonesque these were. They fall through time and again. It is the end of June now. KS is going for short walks, we laugh, we cry, we occasionally argue. I am not sure what I was envisaging for the end of June, but perhaps not all of that. Reality, what actually happens, is always so much more complicated and multilayered than what you imagine will happen. The cartoonish quality of my thoughts lacked depth and understanding, but nevertheless they were useful. It just seems as if running these scenarios, and allowing them play out with kindness, is some sort of preparing the grounds. This particularly happened in meditation and I would just sit and watch and wonder. Perhaps emotions can be experienced, received and held in relation to these possible stories about what may happen. But I don’t want my life with KS to be like a cartoon and my response to him lacking in depth and being unreal. Especially not now. This searching for reality, for what is authentic is at the heart of how I aspire to live my life. This period in my life is so intense, so full of learning, so dear and tender, so heartbreaking. So very real.

Us on the couch last Monday, taken by Viramati.

In a face

I am intrigued by faces. Here change will show itself clearly. Here you often notice first what is going on. The palette of colours in Kamalashila’s face is incredibly varied these days. It seems to go up and down during the day, with different prevailing tones and colour combinations. When he was being admitted to the hospital in April, some of the medical staff were asking: does he look a bit yellow to you? They were asking me because I am the most familiar with what his face normally looks like. I think he did look a bit yellow, slightly, but then moments later his face looked pink again. Every time you look closely at anyone’s face there are lot of different colours and tones. All somehow blending together to give an impression of how someone is. These days when I look at the faces that pass me on the street, I find myself looking for signs of illness. Perhaps even for signs of impending death. I am happy to see shiny, healthy faces. I worry about people looking a bit pale and drawn. I have never cared that much about babies, but these days I adore seeing them.

Last month we had to phone an ambulance when Kamalashila had become very unwell. After a day of tests they thought it had been a reaction to a new medication. When I told a paramedic about the many changes in KS’s face, she said it is because the body is regulating itself. So that shows itself in the face. This consoles me somehow. I tell myself: this is the way his body regulates itself. There can be a lot of white in his face, around the eyes and the nose. He is anaemic. But sometimes it all gets rosy. He can be a bit puffy. All of a sudden bags appear under his eyes and then later there are dark circles. A smooth face follows on a wrinkly face. I look at my own face in the mirror. I look out for signs. I see the worry. I look with anxiety. I look with resignation. I look puzzled. Friends come to visit and on meeting them at the door I feel my face breaking into a big smile. And then I sometimes apologise. I am just very happy to see you. It is not that I am happy all the time. The way my face looks now doesn’t mean I am happy. But I am happy sometimes. Right now, as I am writing, my face is frowning. I feel into my face and land into my heart.

The face of a sky near Vauxhall. Sometimes it is good to turn to the sky.

Is there enough time?

A friend came to visit Kamalashila. He is wondering if this may be the last time they see each other. We do not know. Friends come, one by one. Usually one per day. Which seems to be doable. How much time do they spend with each other? How much time is enough? Time to be on your own. Time with friends, with work, on your phone. A lot of my time seems to be about waiting. Waiting for another breath. Waiting for results, for people to arrive, for people to go, deliveries, medical help, answers. I would like more of those. Waiting to calm down. What is the best use of my time. Of our time. Of our time together. Of our time apart? We were never just sitting around holding hands. At least, not much of the time. Actually we do do that a fair amount. But sometimes Kamalashila just wants to be alone. I understand. I see he needs it. Yet it can still hurt.
I went to have my hair done. She asked me if I had any plans for the Summer. I cried. All my future arrangements are on the basis of: will I be able to honour them. This is not clear. I am not sure how I will be and crying is not always a good look. How much time will I need to recuperate? My friends tell me: you will pull through. You always do. I am not so sure. Sometimes I think: I am not sure if I can do this. But I will have to. And I am not alone in that.

KS under a standing stone near Bosullow, Penzance, Cornwall, Sept 2012.

Finding what is lost

My life with Kamalashila has had many moments of things being lost. Things being left on trains, in cars, in jackets left in people’s houses, objects sliding out of pockets into tall grasses. Once, after searching for them for a long time, I found his glasses in a pair of shoes. Somebody posting back a passport or some medication. Glasses escaping into the recesses of car seats. Retrieving items usually involves a dedicated search. I am good at that. But sometimes items have been irrecoverably lost. A phone in a field. Numerous hats on public transport. I remember him looking for his iPad. Thinking back he thought he might have used it last on a visit to the Netherlands. Phoning the air company, it turned out it had been found in a seat pocket on the plane. I am glad we phoned. Freedom passes slipping out, never to be seen again. On one occasion: pickpockets in Barcelona. Though one other attempt in a crowd was avoided. When he complained, the woman involved starting shouting that he was trying to touch her up. I was quite indignant about that allegation. A phone travelling on its own on the train from Somerleyton to Ipswich. We could follow its course on the FindMy app. A cleaner found it under a seat and posted it back. We sent money for flowers. The joy and the relief of finding things when you thought they were lost.

Hats. Jackets. Jumpers. Keys. Glasses. Phones. Passes. He will hate it that I write this. He will tell me it is not quite so bad. But what I am doing is looking back at these moments. And recalling quite a number over the years. Not finding things for him is often a matter of simply not having enough energy. This morning he was too tired to go out after unsuccessfully having tried to find his keys. I found them fairly quickly in the pocket of a thin jacket that was hiding under a cushion on the couch. Small heart-squeezing moments of loss. Preparing perhaps for bigger losses. Things being lost, never to be found again. Rigdzin Shikpo wrote “Death is like going to the dentist to have your tooth pulled, but then it is your whole body.” Where does it all go? My heart is a bit lost right now.

KS on the beach near Corton, June 2021. After this trip the glasses he holds in his hand would be lost for a week or so until I found them under the car seat.

Tumbling into Love

It is exactly 19 years ago today that I started life as Yashobodhi. A bit later that year I felt the ground shifting under my feet. I met Kamalashila at an order event in April 2006. We had been working together on an online forum for a while before we talked in person. Five years before that I was on a retreat he led, but we had not really had much personal contact then. Back to that day at the beginning of April 2006. We walked from the dining hall to the arts centre and as KS was matching his footsteps to mine, I fell in love. I do not think I could say one sensible word for the rest of that weekend. My heart went right open. It did not only open for him, but it seems it was opening for the whole world. I kept falling for years after that. So much change. Nothing to hold onto. A lot of letting go and getting used to. A lot of growing, realising, seeking meaning, trying to understand each other. Getting to know what each of us needed.

I left the Netherlands a year after we met and moved in with him into a Buddhist community in Devon. From living on my own for 15 years in Amsterdam, I was all of a sudden cohabiting in a small caravan. This was challenging. This was often almost unbearable, but the love and interest in each other was strong. We wanted to live in a land-based community. We thought we would somehow achieve that by moving to Spain, to what is now EcoDharma. This was also challenging. It didn’t work out for us. We came back to the UK and settled in London. What a relief. We lived here for ten years and then, after the first pandemic lock-down and receiving a notice to quit, we moved out of London into the countryside of East Suffolk. I tried this life. I tried very hard. Lots of fields, animals, beautiful skies, but not much culture and friendship. After three years of this, we moved back to London again. It is so good to be here. In some ways. The downside is Kamalashila is dying. The upside is we have excellent medical care close by, friends, galleries, work opportunities for me, lots of interesting things happening all around. Amidst it all, I am still falling. Still going places.

KS and YB in caravan in Hittisleigh, Devon, July 2006

Somewhere between living and dying

So my life partner is dying with cancer. If the oncologist was right – back at the beginning of May – Kamalashila may live till August. This is me having checked this on the calendar, which is of course unspeakably strange and random. It is unclear when he will die. But it is likely it will happen sometime in the next few months. I am grateful we have this time for preparing for his death, for as much as we can. Hopefully we can soon leave the practical details behind so we can concentrate on what is really important. Which is? The first few weeks after the prognosis I was quite clear about it. Love. Love is what is most important. And being real. I still think that. But somehow there is also grief, dread of loss and riding with change. There is planning ahead for a life that comes to an end, and another life that will continue. I cannot think too much about what it will be like when he is not around anymore. There is so much vying for attention and so much to adapt to and accommodate. I try to accompany KS as best as I can and also look after myself. He doesn’t need much practical help at the moment. I also try to keep my own life afloat. Some things are too much for me now. I do not have a lot of energy for other people except for KS and myself. I am trying to figure out how to keep everything together between all of this living and dying.

I felt so much more clear and energetic just after all of this started: KS being checked into the hospital with hypercalcemia. He was put onto fluids immediately. I didn’t know at the time this was to save his life. Back then. A week longer with rising calcium levels and a less than optimal kidney function and it is likely he would have died before his birthday on 14 April. I went back and forth between home and hospital. A tumour was found the day after he was admitted to the hospital and put through a CT scanner. My life goes between these kind of facts about the cancer and a wide array of emotions, interspersed with pleasant intervals of nothing much happening. Sometimes grief is close to the surface, sometimes in the background and sometimes it is finding expression through tears that seem to start in my bones and well all the way up from my toes. My nervous system is holding up for now, but I need to find strategies to replenish, nourish, let go.

Yesterday I went to the Expressionists exhibition in the Tate Modern. I took more time with a Kandinsky and a Franz Marc. I allowed my heart to be moved and lifted. So beauty helps. What also helps is work, conversations with friends, talking to a therapist, baths, light reading, nature, walking, clothes shopping, meditation. Yoga would help, but I do not do enough of it. A friend suggested sports yesterday. I am contemplating swimming. And then I feel so fed up with doing, and having to do stuff. Writing also helps. It has always helped. But yet, I haven’t done much of it since this started. Hence this blog. To help me.

Kennington Park Rose Garden Early June 2024