A while ago I had a meeting with peers. This felt very good. I also joined a peers group on Facebook.
Because I have no permanent damage from my cerebral hemorrhage it feels like I am not a peer anymore. I almost felt guilty about this. But I feel at home among those peers. Continue reading


The Sequel

The operation.

I hope I don’t scare you, but this is how I looked on the 30th of November 2013.


Two days after the operation, not so long ago.

If you can imagine now that they made a access hole in my skull at the top under the lock of hair at the front, and the artery they had to put a clip on is at the back of my skull, right below my brain. Than you have some idea about what they had to push aside to get to the artery.

There where the hole was made, we have some kind of “gap” in de brain, at that point the surgeon could go in between the brain, to access the artery at the back of the brain.
So he literally had to push aside my brain to get there. The surgeon called it “manipulate the brain”.

There is no room to push aside the brain, so he basically had to dent my brain to get access.

So as a result my brain is bruised now. You can’t see anything on the outside, but on the inside it takes 1,5 year to recover.

And this is what is giving me all my problems.

The first week I didn’t have much problems, I came through the operation pretty easy and without a lot of pain.
When I came home the complaints started.

Tiredness, I know this sounds like an “easy” complaint, I mean that people think very easily that you don’t want to do something or asking for pity.
People think, “make a few good nights, and then it is gone” or “ just go on, you will build energy”
And under normal circumstances I would share these thoughts.

But in this case; physically I was already tired from recovering from the cerebral hemorrhage, but I think I have that under control for the most part.

But brain recovery is a different thing to deal with. This recovery sucks all my energy away.
I feel it starting in my head.
I get tired in my head then, than my head starts itching, always in the area of the scar but also at other spots on my head, than my eyes start acting up not focussing corectly, than my arms, and then the rest of my body.
If I take a nap for an hour I am doing ok again for a while, and then it all starts over again.

Everything is working overtime.
You need your brain with everything you do, that tires me, and recovering also tires me, and all comes in more than normal because my “filters” don’t work. So the brain get even more work tob e done, which tires them even more. So basically I am working in a circle.

Time is the only medicine with this.

Right after I came home from the surgery, my anger started, this anger lasted for certainly 3 months. Behavioral changes are at the front of the brain, right in front of where the hatch was made.
I think this is the part that heals first, these filters work again, and my behavior is also normal again.

Type or say words in the wrong order, or not remembering certain words at all, this function is around the “fold” in the brain.
This also is almost normal again, only when my ear hurts again, I sometimes have a hard time finding the words.

The complaints I still have now, are all at the back of my brain.
The function “observations” is at the back, so hearing, smelling, feeling and so on.
Those filters are not recovered yet, everything arrives hard, and it is an area which you use all day, so this recovery goes slow probably.

So the circle I am in now is as follows.
Because of using that part of my brain I get tired, all comes in without filtering, so that’s even more tiring, the recovery of my brain tires me, because of being tired I become dizzy, but sight is also in that area at the back, so it becomes more charged, so I become more tired, and so on……..
I hope everyone still understands.

So the only thing that helps right now is rest and time.
The rehabilitation centre can’t do much about this either.


I am one of those nagging ex-smokers.
Halfway that is, I only nag at home, all 3 “kids” smoke.
I still go to the pub and to visit friends who smoke, and I don’t really have a problem with it.

Last year, all 3 quit smoking, but I think the stress of my operation became too much for them, so they started smoking again.

Last year I also painted the house, between the cerebral hemorrhage and the operation, some kind of occupational therapy I think.
And H. did most of the painting, I wasn’t up to it at all.

A nice clean, fresh house is now being ruined again with the smoking.
My clothes stink.
They smell out of their mouths.

Things like that are what I am nagging about.

I quit smoking for over a year now, and I am not going to smoke again either, but sometimes there is still that feeling of, “yummy a cigarette”.

Looking back I am even glad I smoked.
I know that sounds strange.

But my cerebral hemorrhage is due to a birth defect, I was born with bad spots in my veins, because of smoking the time of when they would burst was brought forward.

So I had a cerebral hemorrhage at the age of 46.
Because of this cerebral hemorrhage, they found another bad spot on my other carotoid artery which was about to burst.
So I needed an operation, a major one , through my skull.
This other artery bursting could have happen soon, but it could also have burst in ten years.

But what happens when you need an operation like that?

They look at your life expectancy.

So if you are 46, you still have almost a whole life ahead of you, you will get the operation you need.

If I would have been 66 for example, than I probably would have died in ten years anyway, so I might as well die from the bleeding, so no operation is needed.

I waited for 10 months for this operation to take place, with a timebomb in my head, and I was slowly going crazy.
I think if I had to walk around wit hit for 10 years, you could have locked me up in an institution.

Kind of bizarre, isn’t it?
In a way smoking saved my life.