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.
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.
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
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.
