Keeper

I am sitting in KS’s room. His old room, you could say. But actually it isn’t that old. We moved into this flat less than a year ago. I was a bit worried about him as he didn’t seem to have any energy at all. We thought it was a multiple sclerosis relapse at the time. Actually his MS specialist told him last month that there had not been any development in the MS since 2018. The treatment he had had at that time, a treatment that is now discontinued because of the risks it poses, had worked perfectly according to the neurologist. So the increased lack of energy in the past years, the sensitivity to temperature shifts, the bad sleep, the reduced mobility in the hip: it all had to do with the cancer. It has taken Kamalashila such a lot of effort to put this room together exactly how he liked it. Especially since he felt so tired a lot of the time. He had it mostly ready in time for the two-month online retreat he led earlier this year. He designed an amazing wall of cupboards. He also installed book shelves in the alcoves and we spent a few days putting the books up, in some sort of order. He was very happy with the room, although he would keep tweaking it. This seemed to be part of his nature. The wanting to make small changes frequently. To improve things.
After he had put it together according to his wishes, he fell ill. And the irony of it all is that now, of course, this room needs to come apart again. I am slowly turning towards the objects that are now redundant, that will be passed on. Objects that have been gifted. I remember we had a strangely joyful evening on the day he heard his terminal prognosis and he was back home from hospital. We were sitting on the couch here and talking about who was going to get what. I am sitting on that same couch now. Over my head the angel wing plant. It has been flowering abundantly since his death. Perhaps displaying its own kind of grief or celebration. I have never seen it flowering in so many different places. This plant has lived with us since we moved into a flat in West Hampstead in 2010. It is sensitive. When we relocated to London, Kamalashila built a frame out of bamboo sticks to protect it, with layers of bubble wrap around it. It survived the move wonderfully and has been thriving ever since. Some of the many medical people that have been in this room would often comment on that beautiful plant. Some would even make photos. Kamalashila must have spent quite a bit of time in this room feeling low in energy and nauseous. He had basically been nauseous to a degree since the beginning of April. It is strange picking up my life again and being the sole keeper of the fridge and the kitchen. Not having to worry about him not eating, or only eating porridge. Not worrying about the cooking smells. Following my pleasures. Yet this doesn’t give me much joy. Perhaps it will eventually.

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Ashes to ashes

I am tired. I have emerged from yet another bath. I sometimes take two a day. Baths are a blessing. Outside the sky is a bit clearer. Inside not so very much. I have finally done the meter readings for gas and electricity. The first reading involves lifting a heavy gate. The second manipulating a cunningly folded panel. I had to lift that heavy gate twice as I had been looking at the wrong meter, belonging to another flat. It turned out the reading didn’t match at all with what the online system told me. So I had to go back and check the right meter. I was proud I went down again and went through that gate yet again. In the end the readings were correctly done and submitted. They are the first ones I have done without KS. In the background there is considerable anxiety about the memorial service, numbers etc. But between all of this I sense my heavy and jittery heart.

Kamalashila’s body was cremated this morning at the Lambeth Crematorium. I have been feeling very stirred up and sad between trying to do those things that come with living an ordinary life, such as meter readings. He wrote ‘I am nourished through solitude and [… ] I die inside if I cut myself off for too long from that source…’. I feel sad he didn’t get the solitude he craved in these last years of his life, particularly the past half year. I hope he is getting some now. I feel sad that I was sometimes not able to grant him all the solitude he needed. I feel sad that sometimes I didn’t receive the companionship I needed. I just feel sad. No companionship at all anymore now. My eyes are dripping. Some teardrops reluctant to fully take the plunge. I look at the shadows the sunlight is casting in this room. I see the sharp shadows blur when the sun disappears behind the clouds. Then they sharpen again. Like the edges of my sadness.

I gave this to KS’s sister Esther this morning.
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Wet socks

It has been a month since Kamalashila was here at home with me. It is still strange to be here on my own now. I am sitting on the yellow couch again. Only this time it is my couch. The sky is grey. The concrete building facing us (or rather me), the one I am determined to like because it is called Holland Rise, looks flat and dull. My legs stretched out in front of me. I am wearing his merino woolen socks and one of his jumpers. The colours match, which is a coincidence. The socks are wet. We would be making lots of jokes about socks. Wet socks are the pits. They are wet because I have been spraying the bodhi tree with water containing a splash of vinegar. I am still trying to bring the tree back to health.
A friend kindly came this morning to help with some admin around KS’s death. We will have to do multiple rounds to finish it all. Just now I went through a pile of hospital papers he had received since being hospitalised at the beginning of April. Discharges. Medication lists. Consent forms. Appointments for visits, scans and blood tests. I added these to the already quite bulky file of past appointments. Problems with his lungs, skin, teeth, kidneys, hernias, MS. A few days before he died I was lying awake in the night thinking about all the different doctors, specialists, nurses, porters, physiotherapists and other medical staff members he has seen in the past half year. There must have been hundreds. So much care and compassion. But at the moment I feel precisely nothing. Perhaps a touch of cynicism. I am not enjoying this. The lymphoma team sent a condolences card. I just hope this means they will stop phoning. Last week Kamalashila’s phone rang. I thought I would pick it up. It was someone from the medical centre offering him a vaccination. I bluntly said: he is dead, he won’t be needing that. The person phoning was deeply shocked. I was not enjoying that either. My brain doesn’t allow me to realise he is dead. Which is just as well.

I found this lovely drawing at the back of KS’s discharge summary of his hospital stay at Guys from 1-4 Sept.

It is final

A week later. My heart is in upheaval and aches. I have been to the rose garden in Kennington Park just now. Sitting on a bench, I opened some envelopes with condolences cards I had found in the letter box on my way out and read them. I very much appreciate all the loving thoughts being sent my and our way. I needed some time alone today. Yesterday I registered Kamalashila’s death at our local town hall. I had felt anxious about this. I do not like forms and formalities at the best of times. As the time for the appointment came and went, I became more irritated. I could not bear the jokes the warden made. I could not bear the informality of the staff there, looking at our records and whispering to each other. I felt outraged by the appointment not being on time, but going 15 mins over. I also could not bear the vicinity of my friend who is still kindly staying with me to support me. In the office of the registrar I was irritated with the seating arrangements, the registrar’s hairline and later also about the misspelling of the cause of death as lymphonia. That was one of the mistakes. I can see in retrospect this is quite funny. At last the correct certificate was printed.
More things about the afternoon seem funny now. I made sure my friend knew how to get back to my place. I knew she had a key. But I could not help myself: I fled. I just needed to be on my own with my excessive irritation. As I was roaming around in the Brixton Orchard, which is built over a nuclear bunker, I spotted my friend passing on the other side of the street. I hid among the trees. I can see how funny this is, in retrospect. I am certainly not proud of myself. After a while I walked into the opposite direction and it was then that I spotted the library. I spent an hour or so in the library, on the first floor, looking out over that wretched place where I had registered Kamalashila’s death earlier. It was real. It was official. He is no longer here. I started walking home and met a friend on the street. This was lovely and it was good to briefly chat about what had happened. I then went home. My friend came back after a while. I hid in my bedroom and then in the bathroom. I cried. My glasses collected my tears. I then cried all the way through eating the food my friend had prepared. It was not a good day. It was final. I am alone, in a way.

I cannot bear anyone too near now.

Wallpaper at Lambeth Town Hall, which I won’t look too long at.
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Looking after Bodhi

It is only five days ago that Kamalashila died. A good friend is kindly staying with me these past days. We have taken all the excess medication, a big bag, back to the pharmacy, labels removed as requested previously. This included the end-of-life drugs. The bag was big and the pharmacist looked hesitant. I said: my husband died. She could not refuse. My friend and I gently sorted through clothes and taken some to a charity. We made a start tackling the bodhi tree in the virtual vihara. This is how I have started referring to the room in this flat that Kamalashila used for his online sessions. Where he sat and talked to visiting friends. Where he wrote at his desk. We also meditated there in the mornings. Back to the bodhi tree: it developed into a small tree out of a cutting from the tree in Bodhgaya. We were sent two cuttings by post twelve years ago or so, and because we missed the delivery had to collect from the post office a few days later. One did not survive the transit. The other is still alive, but going through various episodes of assault by insects, among other things. At the moment it is rife with aphids. Kamalashila would treat that tree and it hasn’t had much attention in recent times. So my friend and I have been removing aphids from leaves and stems with a sponge and soapy water. There are quite a lot of leaves. She regards it as a meditative activity. I am not that keen.
The medical examiner phoned yesterday about the death certificate. This was about what had been suggested as the cause of death. He had carefully gone through the medical records and was asking how everything had been and whether I had comments and suggestions about the care Kamalashila had received. It was a good conversation and he was kind and considerate, but it stirred me up. It brought everything back again. In as far as it had been away. It is all quite a lot that is coming towards me in the aftermath of Kamalashila’s demise. There is so much to do, think about, arrange, decide. Luckily a great number of issues can be dealt with further down the line. But right now I am experiencing overload. I also need to attend to how I feel, to experience the energies in my body. My heart is too full and tense. So I am sitting here and I write. It usually helps bringing some sort of order and perspective. It is all still too much. Far too much. How strange this all comes with a loss.

Bodhi tree after treatment.
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Hole

It is three days after Kamalashila’s death. A nurse at the hospice had told me nothing would be happening during the weekend regarding registration etcetera. So I did not have to think about anything like that. I walked along the river with a friend. And yesterday morning I went to the hospice, accompanied by another friend, to go through all the steps that need to be taken. Later we had coffee and she listened to my account of the past three weeks. She accompanied me home and sat next to me as I made the appointment for the death registration. This felt very significant. I cried. We talked through what needed to be asked and said before I phoned the funeral directors to arrange the direct cremation. Kamalashila’s cremation will happen in the Lambeth Crematorium in Tooting. I smile when I type Tooting. It is a significant place for our Buddhist community.
Later in the day I met another friend who is going to help with the memorial service. We discussed possible dates. We talked about Kamalashila. About the last weeks. I came home. Cooked a meal for myself. I have hardly been home. I have only come home to sleep, have a bath, read a book, do some necessary chores. I went through the sad contents of the fridge. None of it has had much attention and a lot of it needed to come out and be thrown away.
This morning a good friend came to collect the drum Kamalashila wanted him to have. The beating of that drum reminds me of the beating of his heart. It represents his passion and his voice. I felt a bit sick when it was packed away. But it goes to the best home for it and was received with pride and gratitude. I know it will be put to very good use. Kamalashila’s virtual vihara feels clear and calm. There is no sense of lingering here. We have had a lot of months to prepare for his death, so we have talked about where things would go and how to approach this time after his death. But of course there are many bits and pieces that need to be decided on and that we hadn’t thought about. And it is quite early days. I feel I first need to process what has happened since the new diagnosis. I haven’t even sensed into the giant hole Kamalashila is leaving in the fabric of my life.

I found this on KS’s phone, dated 4 January this year. Not the best photo of him, but standing with a poetry tile on the Southbank. The verse is selected by his father who was a surveyor engaged with developing the Southbank.

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No more I love you’s*

I still need to write. Kamalashila died yesterday morning. I am still here. It is incomprehensible. I do not know how I feel. I do feel something. I feel many things. But I cannot give it words. Sometimes I cry. Sometimes I just gaze ahead. I talk to friends and cry when I think about the past three weeks and the pain Kamalashila had to go through. I cry about the pressure I have felt making some decisions. I said goodbye to him a number of times yesterday morning, after he had died. I thanked him for our lives together. For all he has given me. I kissed his forehead when he was still warm. I stroked his hand. I kissed his forehead when it was a bit colder. I stroked his hand again. I looked at his chest. It was not moving, not heaving. No more laboured breathing now. I kissed his forehead later and it was much colder. I kissed him for the last time when it was 11 am. It was seven hours after he had died. He was quite cold. I took the Manjushri rupa. Left the scarf that was draped around it with Kamalashila. I walked out of the door and left him behind.
The last time I had seen him alive was the evening before. I had been looking in regularly to see how he was doing and sat with him for short periods. He was very close to death, the doctors had said. It could happen any moment. And you could see it in his face, hear it in his breathing. But when I walked in at 9pm and chanted a mantra for him, I saw something on his face that made me think: it is enough. He doesn’t need me here anymore. He wanted to be left alone. So I left. His sister Zoë and I were at the hospice. Both sleeping in different rooms. We asked the nurse to wake us up an hour after he had died. So he would have that hour still to himself. They checked him every 15-20 mins, by shining a torch on his chest, in the darkened room. The room felt very clean and quiet. He was clean and peaceful. The air was fresh.
At a quarter past five the nurse knocked on my door. He is gone, she said. We embraced. These nurses and doctors at the hospice are so amazing. He was later dressed in a suit and t-shirt. One nurse put a purple flower on his chest. She also opened the window. For his spirit, she said. Kamalashila 2, as he called himself after the new diagnosis, always wore suits. There is no space in the hospice for people to come and visit the body later on. But we had some hours. They stretched it till 11am because it was cold. I put a message in the group with helpers and good friends. Some friends came and sat with him. Outside his room we sat and talked. I talked a lot. The friends listened and witnessed. I felt held. Then at 11am I went in to say my final goodbye and collected the rupa. This part was now over. His body was going into the morgue. I went on the bus. Home.

*This song is playing through my head today.

Diffuser, purple flowers, rose oil and frankincense, and Manjushri with mala and scarf.
At the end of Kamalashila’s bed. I took the diffuser away in the afternoon. It was too much.
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Diffuse

KS is still breathing. Sometimes shallow and fast. Sometimes it sounds like he is sleeping deeply. And there are also moments where the out-breath seems to create bubbles in his chest and it is difficult to inhale. 

There is a diffuser in the room. I put some rose oil in and also frankincense. Both scents he has loved in the past. I hope it isn’t too much. I switch it off regularly and briefly air the room. In the midst of all of this, autumn has arrived and the air outside is chilly. The dispenser changes colour all the time. I think he likes this as he has two lamps like that in his room, the Virtual Vihara room that has stood empty for almost three weeks now. 

It was three weeks ago that we had to go to A&E, were sent back for an apparent false alarm and then had to phone the ambulance early Saturday morning. It has been a traumatic journey since then and I am hoping this stop at the hospice is going to be gentle and soft. But I have learnt that whatever I have been hoping prior to this time, isn’t what is manifesting here and now. I hadn’t expected to feel so awkward and helpless at times, that I would not know what to say, what to do, what the right action would be. But this is what is happening. I may not always get it right, but there is thankfully a lot of help around. I have sat with him, meditated and chanted the long Vajrasattva mantra. But frankly most of the time I hang around, read, talk to people. I think somehow I had expected KS’s dying process to be more in line with his life, his character. But as I am sitting in this hospice full of sounds, busyness, full of kind strangers helping all the way, his worn-out body in the bed sometimes feels quite unfamiliar. I continue eating, sleeping, talking and going for short walks. But his life is approaching its end. How unfathomable. All seems so inadequate. 

KS in Cornwall, 2012, in front of the Merry Maidens. I love this photo of him.

At the hospice

I am sitting next to Kamalashila in the hospice in Clapham. It is the oldest hospice in London. I am the one who is benefitting from the lush green outside his window, as KS is not really opening his eyes much now.

In the background intermittently some sort of machine that sounds like a siren. And closer by the air mattress pump that gently changes the distribution of his weight. And even closer: KS’s breathing, fairly fast and shallow. But easy. He hasn’t woken up since I arrived here a few hours ago. I have been going home in the evenings, taken a bath, drank some tea accompanied by tears and then off to bed with a book. My lifelong habit of regulating myself through reading is helping me hugely. I arrive here before our usual meditation hour. Although he hasn’t really been here long enough to create habits.

I sat with him this morning, listening to his breathing. I was sensing into the pain of the here and now, some bitterness about what is happening and how it is happening. I opened to the situation fully on the in-breath and let go on the out-breath. It helped. People who work here take their time to talk to me. That also helps. They are asking me how I am. Telling me they are here for me. I talk to them about how we arrived here. And it is an astonishing and lengthy story. I am and feel more supported on this part of the journey. I relax into it a bit and feel grateful. 

Self reflected in values in hospice corridor.

Operation apple juice

Today Kamalashila was taken to a hospice in Clapham. During the weekend it became clear he was living longer than expected initially. This was after his stay in the ICU and his kidneys no longer able to support his life. The ward at Guys is extremely busy. Everyone is doing their very best, but there is too much work needing to be done by a workforce that is too small. So yesterday I asked the palliative care team whether we could consider moving him to a hospice after all. They agreed it was feasible and an application was made. Last week it seemed we didn’t have time for the application to be granted and KS too frail to be transferred. Since then he ‘plateaued’ and it seemed very much worth it after all to find a more suitable place for his final days. We had a very difficult day yesterday with KS agitated and frequently in pain, and frankly, not in very good spirits. The news this morning that a place was found in a hospice was very welcome. His sister Zoë and I both travelled with him in the ambulance. The paramedics were very kind. The ambulance drove southwards and we closely passed our home near Oval. We arrived early afternoon.
At some point later in the afternoon I asked him whether he wanted to have some water. There was also some apple juice, so we tried that. He hasn’t been able to drink from a glass for quite a while. He didn’t have enough energy for sucking a straw. So I thought I would ask whether they had any of those sponges on sticks that are used in the hospital. I asked one person. Then met a nurse in the hallway and told her I asked for something to help KS drink. Operation apple juice started. There were three different kinds of syringes and three staff members involved. KS’s bed went up and it reminded me of a space ship. The bed was also adjusted to put KS in a more upward position. A pad was placed over his chest. Different syringes were used. It didn’t go that well. He said: I am exhausted. I smiled to myself thinking about this scene when I went home this evening. The people in this hospice are incredibly kind and so very eager to please and help. It is wonderful. I was also very grateful to have something to smile about after a weekend that I do not wish on anyone.

This is KS’s view from his bed in Clapham Common. He loves the colour of the flowers on the right.
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