Waiting Room

I have always been afraid of losing Kamalashila. One way or another. The difference now is: rather than this being a fear, it is an actual knowing. Knowing I will lose him. But not quite understanding what that means, how that will be. So far, it feels like I am in a waiting room. My life is suspended in some ways. Not so much in other ways. I am waiting for signs that something may be about to happen. But at that same time I need to be here, now, alive and present. To be alert to all those signs that all is still well, still going on, going strong. Appreciating all that is here. A better image is a half way house perhaps. Another life may start later, as this one may be coming to an end. But yet it is still very much happening, unfolding, rich with inspiration and love.

The first strong reminder for me of his impermanence, arose in an actual waiting room. This was when Kamalashila took his blood pressure whilst I was registering at a Devon surgery. There was a machine. A sign said that if your blood pressure was over 190 (?) then go to the reception desk immediately. His was a bit over 200. This was a big shock at the time. It led us to reconsider where we were living and how, and to make changes.

Ten years later, in 2017 and back in the UK, KS reported losing sensations in his feet. A few weeks later this partial loss of sensation went all the way up to his chest, as if he was wading into the water. Would this losing of body sensations continue? Would it result in death? His experiences could later be attributed to MS, and luckily a mild variant. But there was a period of having no idea what was going on. Which was worrying and frightening. Yet, even with a diagnosis, also with the current one, there is still a strong sense of not knowing. Not knowing how things will happen, how it will feel, what it will look like. The only thing I can be certain of is love. That will also change, no doubt. But love is here and love is here to stay.

This is us in front of the Metropolitan Museum, Manhattan NY, mid June 2014.

Drops

I often feel quiet these days. I have not much to say. I can feel upset. It can sit heavily in my body: in my chest and stomach. But it is hard to give it words. I look at myself as I am brushing my teeth. How amazing that my eyes are seemingly still when my head is moving side to side, teeth and hand engaging with the electric toothbrush. These motor movements that actually really do not need me. Rain is coming down softly. The new flowers in the planters outside the windows must surely benefit from that.

As Kamalashila’s second guest of today leaves, the flat falls back into silence. There is not much sound within, but I hear an airplane overhead, some shouting children outside and the engine of the occasional car passing by. In my experience it is hard to find a balance between engaging with people and being with myself. I think KS has always needed plenty of time to regroup, to come back to himself, go deeper into his thoughts after seeing people. But now it is more of a search. How does it work best. A process of trial and error. There is more intensity in the meetings and less energy to engage. More time needed to recuperate and more space to find the way to the depths. How does that balancing work? Wanting to meet people, and at the same time needing to really meet yourself. I have never found that easy for myself. But these days I need more time to quietly sit and feel and think and sense. Watching the clouds go by. Noticing subtle traces of rain meeting roof tiles and cables. Leaving drops on the windows. As the rain falls I keep looking and pondering.

Cityscape with planters on a drizzly day, 8 July 2024.

Gathering thoughts

Weariness hangs around the flat. Plus lethargy. KS has a chest infection and started antibiotics today. He tires more easily now and the infection doesn’t help. It is evening and I try to gather my thoughts. To find perhaps some lucid ones, clustered together around a topic or a theme. But so far I am only finding that weariness: inside of me and around me. A sense of being drained.

I suspect I am not the jolliest person to be around at the moment. Luckily people do not seem to mind that much. I can remember that earlier in the year I took the decision to make this a year of cultivating joy. I am not doing too well with that. Although there are moments of joy in the day. These make everything softer. Lovely friends. Heartfelt messages and words. Coming across sweetly scented roses in the gardens lining the streets. Noticing the fall of light on walls in the dusk. The changing cloud formations in the sky. A sense of peace as I walk on the pavement in a quiet and straight street. An exchange of smiles with someone waiting at the same counter. KS and I singing and humming together in the kitchen. Our lives so intertwined right now. But yet I am on my side and he is on his. Walking different paths in different paces. Sometimes singing the same tune.

Myself and roses in the gardens of Somerleyton Hall, end August 2023.

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 airplane, 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.