Monday, December 06, 2004

Death Is

After a three year's battle against Death, he came to take her tonight. But as she was thankful for his blessings last week, she will be grateful again. She just stopped breathing tonight, without pain, without suffocation or paralysis . This morning I woke up to find her hand cold, as they always were the last weeks, but also the rest of her body was cold and she was motionless.
Those who knew her, know that despite that she only became 32 years that had at least double the lifespan. Even in her last months she was active, fully aware of the richness, joy and urgency of life and caring for others as if she was not struck by such a harsh fate.

Those who only got to know her via the blog could experience the same by reading her book. Her book was her literary heritage, the highlight of her intellectual and artistic achievements and next to the love for me, family and friends the thing that made her want to live on, fight, get all out of life. As you will know, it can be bought via her website , it meant so much to her that reading it will be the best tribute to her I can imagine.

So now she is dead and as she says: She found peace now. She was not religious, felt most attracted to the Buddhist way of approaching life and death. She wanted to let go, as you should as a Buddhist, of all desires and longings so the soul can find its absolute peace, far from the worries of the world. Still letting go was difficult, she loved me and the world too much. She pitied those who loved her madly, because now we have to live on and deal with the loss while she found her peace.

She will never return and still she will never leave.

Thank you all for reading the blogs and sending her such inspirational, loving reactions. You still can mail me and when I find the time I will answer.

I wish all of you all the strength and love and happiness you can possibly reach. Don't let severe illness take away your pride and positiveness about living, let Grace be an example to all of us.


Sunday, December 05, 2004

Dying, day 10

My body is breaking down so quickly in so many ways that I wonder what I will die of in the end. One of these days the tumour will probaby damage a nerve with fatal consequences. Perhaps it will become so difficult for me to get my mucus out of my throat that I will simply suffocate. And then there's the possibility that my right foot will get an infection. 3 days ago I could still walk on my own aroud the house, albeit at a snail's pace. This morning I've asked for a wheelchair... At the rate it's going, I know I won't be able to keep blogging for long. But Ton -- my hubby, love of my life, soulmate, best friend, personal nurse, and spokesman -- will become my blogkeeper then, so let me introduce you to him this evening...

Grace's condition is getting worse and it is very frustrating that there is nothing I can do about it. I can help her walk, eat, take medicine, write her blog, but I cannot do anything about this tumour that is eating her up. The last days I was not depressed though, it is a wonder how positive we have been. My family came to dinner and it was very pleasant. And despite having an awful night without much sleep, we worked hard and energetically on her book. I should let her go, that is the Buddhist way to cope with it, but I am holding on to her even more now I am her private nurse and her resort. Love her too much to let her go.

A child is born, Grace's and my first nephew, Xavier. Seeing his picture brings a smile on my face everytime again. We will add a picture soon to bring a happy note to this blog. As Dylan says: Death is not the End.

Thursday, December 02, 2004

Dying, Day 9

It seems that death took a couple of free days off. I felt great yesterday and today. I finally felt some energy again, and the painkillers managed to keep the pain away. If he stays so nice and sweet I will go on a march from the Dam to the Museumplein in Amsterdam to demand better working benefits for Death. Paid vacations, early retirement, lots and lots of sabbaticals, free dental treatments (perhaps he'd go to the dentist more often then...) Now is this a deal or not?

Wednesday, December 01, 2004

Dying, Day 8

One of the things I wrote about in my book, and which someone also mentioned in an email to me today, is how dying will be more difficult for the people around me than it'll be for me. I, for starters, won't need to cope with my death once I'm dead.

I can't say that I'm glad I'm dying, but I don't think I'd rather be the one losing someone I love either. It is easier to let everything go when you die, but when someone you love is dying, you'd want to hold on to as much of him as you can instead.

What is there left to hold on to, when this glorious thing called life itself is so ephemeral? When everything we seem to have really fade, change or disappear completely with time? Our emotions, convictions, relationships are never constant; happiness and love are found and lost in turns; we live and then at a certain moment we don't anymore... where is the sense in this all?

Yet, holding on can be something beautiful. Even when we know that it will be all in vain at the end, even though it will bring us the most difficult times ahead, it is the only thing that we as humans can try to do in the face of sorrow, loss, bewilderment or incomprehension. We are going to try holding on anyway, because there are so many things that are worth the while -- feelings and memories that remind us just what warmth, bliss, pride, comfort, or pure happiness really is about. Holding on will make it harder for us, but why should life be easy anyway?

And so I close this day of dying with a most delectably wonderful song by Prefab Sprout that never fails to remind me to hold on...
Name me one little thing / You'd be wanting to keep
As you give up the ghost / As you sink into sleep
Maybe her face in the morning / Maybe his in the evening
Maybe words never spoken / Aren't they the ones worth hearing?

Nothing sounds as good as / "I remember that..."
Like a bolt out from the blue / Did you feel it too?

'Cause that's all we can have / Yes that's all we can trust
It's a hell of a ride / But a journey to dust
And there's nothing pathetic / Listing clothes she'd wear
If it proves that I had you / If it proves I was there...
Prefab Sprout, "I Remember That"
from the album From Langley Park to Memphis

Tuesday, November 30, 2004

Dying, Day 7

After 2 straight nights of some decent, 5-6 hours of sleep (in bed), I got a reprieve from all that drowsiness today! It was wonderful to have some bit of energy again, even though I can hardly do much anymore. I can still connect my catheter to the feeding pump, I can still walk (v. slowly) to the toilet myself, but my days of cooking/baking are clearly over. I will have to be the chef this week, calling the shots in the kitchen, while Ton will have to be the assistant cook, doing the actual cutting and frying. After this week I consider myself officially retired from the kitchen.

It is lovely to have Ton around in the house all day, I know that he will make it so much easier to enjoy whatever there is left to enjoy of my days. And I know that they will be totally unpredictable from now on, so I'll just have to squeeze whatever I can out of them. I can't ask for more. Well, no actually, I can ask for more. But I just won't. :)

Monday, November 29, 2004

Dying, Day 6

Today I've become a southpaw. The right side of my body is now so weak that I've got to use my left arm, leg, foot, fingers, etc., to do almost everything. I had an appointment at the hospital and it became clear that my trip with Ton to the city centre 2 days ago was my last trip outside. Don't think I've ever before had such difficulties climbing stairs. It has also come to the point when even the doctors don't quite know what's happening. The red spots on my feet are baffling, as with the cuts all over my left hand.

I do feel quite defeated today. I've got to fight just to keep awake for half an hour. Ton had to push me in a wheelchair through the hospital, and I was so glad for it because I just felt so weak. Somehow it all seems to mark the start of the end. Let me now play some music to that...

Saturday, November 27, 2004

Death in the weekends

In principle, dying doesn't occur in weekends.