~~ One day out of the blue she asked, "Do I sacrifice all this to get a move on?" (for the sake of getting a move on). I wasn't sure if she'd asked "Do I" or "Dare I", and she said it was the former but could easily have been the latter.

Feeling and then strength withdrew from her legs very gradually in July and August. She described it as difficulty in hooking the muscle with intention. The intention would reach the muscle but often fail to latch on to it, and nothing would happen. Or like pulling on puppet strings that were not properly tied to the puppet.

In August and September the numbness started creeping up the sides of her body, and strength began to withdraw from her arms. Pain started to wrap itself around her chest, the front and back ribs.

In early October there were days when she would repeat, sometimes several times a minute, "Lift!" ... "Ben, lift!" I thought she was asking me to lift her and I tried all sorts of things. Suddenly I understood that she was trying to get her arms to lift, or asking me to get her arms to lift ... she was anxious and bewildered that they would not lift.

I had seen this coming but had not wanted to try to explain in doctors' terms what was possibly happening, feeling that if she accepted that information, then it might make progression of the disability more unstoppable ... and that anyway the information would upset her. Eventually however I did try to explain, as gently as possible.

Contrary to what I had imagined, my attempt to explain things immediately brought her great calm. What had been making her agitated and bewildered was not the progressive disability, but the lack of an explanation for it.

Round about this time she began trying to figure out a little of the mystery of dying. Parts of herself were beginning to withdraw partly to other realms where she was receiving instruction of some kind. She would frequently continue in the waking world some conversations that had begun elsewhere.

Somehow the process of dying became represented in her mind by the image of getting on the airport bus in Trapani (western Sicily) to go to Palermo airport from where she would fly home. It is a trip we have often made together, but this would be the first time that I would put her on the bus by herself. She worried at first how she would manage her suitcase, and then realized that she would not have a suitcase.

She continued to pay the whole process the respect due to mystery. In the middle of the night she repeated many times, "I do not need to know" ... "I do not need to know" ... I asked her what and she said "when it is I will die".

Then sometimes she would ask "Can I just slip away now?" I would answer, "Yes you can but there is no hurry; if you stay and honour us with your presence for a while longer it is wonderful".

She continued to take delight in this world. On Mondays at 1pm volunteers from the Oxford Philharmonic orchestra would come to give impromptu concerts. Other patients came in their wheelchairs, she would be the only one attending in her bed. The arrangement was that the nurses would come at ten to one, to start wheeling her bed along the corridor. She would get ready at 9:30 am, smart t-shirt and hair combed. At 10 o'clock she would start asking why they had not come yet. At 11 she would ask again, she was worried that they would forget. Of course, they did not forget, they came at ten to one and she proudly set out on her outing.

The nurses would also come with a hoist, and hoist her on to a recliner chair which could be wheeled out into the garden. After the doctors started advising that even with a brace this could be too much for her back, the nurses would come and hoist her into the air, give her a twizzle, and then back into bed. Sometimes in the night she would say over and over again the word "Hoist! ... Hoist!". If, while she was apparently sleeping, a nurse in the room mentioned the word "Hoist", she would become wide awake and raise her eyebrows expectantly.

One night she said she was scared. She said bloody scared actually. I found it difficult to know what to say. I couldn't say there was nothing to fear, because if I did so, then she would have been sure to ask "How do you know?" ... and what could I have said then? Instead, I improvised wildly and said "Love overcomes fear". I hoped that when I looked it up on the Chinese traditional medicine charts there would be some channel by which love overcomes fear, it sounded plausible enough.

(Geeky footnote: when I did look it up I found that "Sympathy controls fear" would be nearer the mark in traditional Chinese 5-element theory, but my improvisation was reasonably close.)

Anyway, she accepted the idea and carefully learnt the phrase, "Love overcomes fear", shaping her lips around each word and coping with the repeated "ove" sound, like a schoolgirl learning her lines, and many times she repeated it over the next days.

On 30th October another thing she said half asleep, "We need to leave me to die". Then, realizing she hadn't got the meaning across correctly, she said it again and added the word "You", jabbing me in the ribs. "We need to leave me to die, You!". The word order still wasn't quite right but I realized she meant, we need you to leave me to die.

In the afternoon of 31st October while holding each other in our arms she clearly said the single word "extremely", I think she wanted to say extremely near the end.

We know that she was not scared. In the evening I sent a text message,

"Talking more difficult, I can only make out a few words here and there. But she is hearing everything clearly and can nod or shake head decisively.

So for example just now:

Are you warm enough? No reaction

Are you cold? No reaction

Are you comfy? No reaction

Are you scared? Vigorous and prolonged shaking of head"

In those days when I was asked how she was, I would say that her breathing seemed unchanged but that perhaps I was not noticing any change because it was so gradual. Actually the gradual change was heart-wrenching as her breathing slowly turned from being something that was simply ongoing and automatic, to become something where each breath was a decision as to whether to actually take.

How she chose the exact moment to go is a mystery.

During her final days I left the room only to get tea or coffee from the common room along the corridor, which took easily less than 5 minutes. Probably I went to get tea around 17:30 on Friday 31st October, and then I was continuously in the room all night. On Saturday morning Mandy brought breakfast a few minutes after 8 am. The staff were faithfully bringing all meals even though Kinthissa was not swallowing anything. I lifted the cover and as it was Saturday, breakfast was special: two juicy sausages mushrooms and scrambled egg. I said to Kinthissa I would go and get coffee, back in 5 minutes. When I got back less than 5 minutes later, she had stopped breathing.

Now I can see that it was perfectly true that we needed me to leave her to die.

If I had been at her side when she stopped breathing, I would have found it completely impossible to not interfere, to not try by gently massaging her upper back, or rocking her from side to side, to help her breathe.

She went during the only 5 minutes in her last 14 hours when she was alone ~~

 

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