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. :)

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...

Death in the weekends

In principle, dying doesn't occur in weekends.

Dying, Day 5

Now and then I have the urge to cry, and then I mean really to wail my lungs out. To cry over everything that's overcome and is overcoming me, over how it will all end for me. Today was such a day. Today was depressing. My pain increased again this morning, and I was forced to stick an extra Durogesic plaster. The strength in my right arm and hand is going much faster than I have feared. I am clearly getting clumsier by the day. It's so bad now that I have decided to use my feeding pump to inject my food into my stomach catheter instead of just by hand. I now wonder which new problem I'll wake up with tomorrow. It is so tiring having to watch your body break down like this, and knowing that the worse is yet to come.

Sadness is such an overwhelming emotion. It has a way of derailing all your plans for the day, and snuffing out your energy. Sadness plants itself in the centre of your consciousness, and dictates you from then on. It spreads itself out through your spirit so that you leave a trace of it in everything you do or say. I've just finished baking a tray of sadness-flavoured cookies. I'm now listening to some of the cheeriest sad music. I guess sometimes you just have to drown yourself in sorrow. I'm drowning...

Dying, Day 4

I slept till 9 o'clock this morning! I was so glad I could sleep longer last night than I have the past week. It must have been due to the new Durogesic plaster I stuck on yesterday. The pain is much less of a bother now. I hope for a repeat tonight! Perhaps I can finally catch up on all that lost sleep then and won't feel drowsy through the whole day, 'cause there's nothing more irritating than having to sleep away all that precious little time I have left! And there's also nothing more irritating than having so little energy!

My chocolate cheesecake turned out delicious, I've been assured by Ton and the 2 guests we had over yesterday and today. So if you'd like the recipe just drop a line! Baking cocolate sandwich cookies is on tomorrow's programme...

Dying, Day 3

What do you say to friends who say "I'm sure you will get well soon"? What is the basis of their faith that I'm actually not dying, but merely undergoing a phase that will be temporary before life starts kicking in again? Do they know something that I don't? Do they realise the seriousness and extent of my disease? That tumours tend to grow rather than shrink spontaneously? That death is statistically, historically, even philosophically more certain that life?

The enthusiasm to believe that I will get better is based on the reluctance to think about the concept of death, to try to understand what death means. Of course death is frightening. That's a natural biological reaction. Every living thing strives to stay alive. And death is all the more frightening when you have to watch it unfold before yourself. But you achieve absolutely nothing by refusing to acknowledge it. You do not comfort me with your assurance that I won't die, because escaping death is not what I'm longing for. What I'm longing for is for you to understand what death is. Look it in the eye and see it for what it is. And then you'll see that understanding death is the only one and true liberation...

Dying, Day 2

It was a beautiful day today! It was sunny. A nice change from the gloomy cloudy skies of the past week. I tried sleeping last night. When I woke up at 4 a.m. I took a sleeping pill, but that wasn't a good idea, as sleeping in was harder than I thought. At 8 a.m. Ton's alarm went off. I tried going back to sleep after breakfast, but at 11 a.m. the cat had enough of it and decided to wake me up. I've been feeling like a zombie for the rest of the day. I've done everything in slow-motion. I took the entire afternoon to bake my chocolate cheesecake. But it does look good. Now I only need people to eat it, and it'll be perfect.

I felt light cramps a few times in my toes and fingers today. That's new. I am also extremely sleepy and exhausted. That isn't.

Dying, Day 1

I walked through the city with Ton, my husband, yesterday. I wanted to get some groceries so I can bake up a storm this week. Ton wanted to pick up our copy of the new Poezenkrant book, signed and all, because we hadn't been able to attend the book launch party at the bookshop on Saturday. (It didn't matter that we missed it, because we had been invited for the Labour Party's Cultural Political Café afternoon where I was interviewed about my book!) And I felt like a really old woman. It seemed more like I was strolling than walking.

Today I noticed that my right hand isn't as nimble as it normally was anymore. I'm holding spoons in a different way now so they won't fall out of my hand easily. The question now is: how long can I still use my hands? I remember that the situation deteriorated very quickly the last time, before my operation. I will have to try holding out now for as long as I can.

So often I feel that I am the only one with any semblance of haste. I am in a hurry to do everything, and I want to do it today, not tomorrow -- this week, and not the next. The concept of the future doesn't exist for me anymore. But unfortunately there is also so much that are out of my hands, that I can't influence, that I have to trust to others to do, and these others still have the concept of future. This is the fundamental difference that divides me now from the rest of the world. I worry if I'll have enough strength in my hands to knead my cookie dough tomorrow. I'd rather have baked them today.

But today I was felled by a spell of absolute exhaustion and sleepiness. I haven't been sleeping more than 5 hours every night for the past week. And then not more than 3 hours in a row too. I get woken up by pain, and I can't get back to sleep anymore. I can't seem to lie in bed anymore without the pain creeping in after a few hours. So I am up and sitting most of the time now, or I sleep on my armchair. The consequences of not being able to lie down more often are feet swollen with fluid. The fluid can't stream to the rest of the body because I'm vertical most of the time. Also, the consequence of having to take Durogesic, my painkiller, is that I have to take Lactulose every day to reduce constipation. This is one of the rare instances that I can say thank god I can't swallow anymore and so I only have to inject that stuff through my stomach catheter, but Lactulose has been taken out of the medical insurance. Today I heard how much I'll have to pay for a bottle of that sweet and simple potion: €31. Three cheers for the Dutch cabinet.

The body is dying, yet you have to keep spending money and effort to maintain it as if you still want it in tip-top condition in 20 years' time. Isn't that strange? Will I ever understand this?

Death and Jacques Derrida

Derrida -- that great philosopher -- passed away recently, in early October, from a disease. A few weeks ago I read the last interview he gave in August in which he said (translated roughly from Dutch, as I had read it in a Dutch magazine):

"Learning to live should also mean that you learn to die, that you assume absolute mortality as the basis, and learn to accept it, without expectation of salvation, hope for recovery, or delivery for yourself or for another. The classical philosophical exhortation since Plato: to philosophise is to learn to die..."

A smile overcame me at this point, for I have said exactly the same, in my book. That Derrida and I have both come to the same conclusion gives me an enormous sense of self-satisfaction. Through mortality greatness attains immortality. Derrida may be physically gone, but the heritage of ideas he has left behind will count for more in the end...

Dying, Day 0

There's so much to tell. But I don't know who to tell it to. I've even written a book, but that doesn't seem enough now. Strange things are happening to my body. Thoughts are blowing like a blizzard through my mind. And I long for liberation to tell. It's the only thing I know that will make the journey to my grave less lonely.

Today I've found the resolve to start. I start with the modest hope that there will be many days of dying to come. That I will continue to have enough co-ordination in my hands and fingers to type on my keyboard to keep this blog going. And that, perhaps, there will be someone worth telling all this to.