Author: Yashobodhi

We are waiting for the IV nurse to come back. She is seeing a patient nearby, whilst saline fluid is dripping into KS’s vein. His calcium is too high again and he was been feeling more unwell this past week. This weekend he is getting two litres of fluid in four bags: one in the morning and one in the evening. The medical team members are fantastic, without exception. It is wonderful not to have to go into hospital for these procedures. In the meantime I am preparing a slow cooking tomato soup. Yesterday evening as the nurses were waiting for the second bag to finish, I baked a cherry cake. Which included eggs. And I hadn’t cooked with eggs for 20 years.

Food has been all over the place since KS became ill beginning of April. At first it was him not being able to eat at all and being constantly nauseous. That week in hospital he was eating mainly custard. When he came home he shifted to porridge. That was the only thing he could ingest. This was also the period in which he could solely drink Pellegrino, and even that was challenging. There was an episode of liking seedless grapes. This was soon over. He could not bear any cooking smells, which made cooking at home difficult. He would sit near the open window to inhale fresh air. We had of course stopped eating together by then. Which I found difficult. I would cook a batch of four days of food for myself in a multi-cooker with the lid on.

When the nausea receded with the help of medication, cake entered the scene. And chocolate. And fruit gums. This was also the result of medication to stimulate his appetite. He became quite voracious for a while. Later on he started eating fairly normally again. And we resumed having meals together and then also cooking for each other. This is where we are now, though my healthy eating commitment is on a slippery slope these days. All the way through our living together we have mostly taken turns cooking. But I have had periods of time in earlier years when I was too tired and uninspired to cook on coming home from work, and then KS would be the main cook. He would send me pics of what he had prepared, so I knew what was waiting for me. I tried to find one of those pics just now, but they have all been deleted. I felt a pang of loss.

Last week my drive to cook took a nosedive and KS kindly did most of the cooking. Luckily my inspiration has come back again this weekend. So yesterday evening I finally made that cherry cake. After trying lots of shop-bought cakes that always fell short because he felt there were not enough cherries. This one was a triumph. And a sweet, much needed pleasure.

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.

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 aeroplane 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.

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.

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.

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 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.

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.

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.