12 November 2014

Imagine this scene: a group of children playing outside on a sunny day, the game is turning into a race and now all of them are running down the road, except for that one child who cannot keep the pace. The others are already too far to notice.
On bad days, really bad days, I am that child.

The overwhelming feeling of having no direction, that nobody needs me, that my purposeful life is over.
Oh, of course, my daughter and my husband. They will swear that I am important, sometimes under duress, and sometimes when they do mean it. And there are others, occasionally, who value and cherish my presence, my input, my work. Honestly, I am proud of my work and all that, on most days, but especially on really bad days.

I know that I will never be healthy again and that this illness is claiming more and more of me, slowly. I know it does not look like it but like the fool that I am, I am still fighting it. 
All. The.Time. It is a hard struggle and a useless one, really. I leaf through my diary to count the medical appointments and sick days during the last 12 months and I feel grim. No wonder, R tells me that he has lost track of all the experts and why and when I have to go and see them.

There are still glorious days, occasionally, when I feel energetic, my face flush and tingling after a fast cycle, when I clean the kitchen floor last thing before bed and still have enough energy to run upstairs. On days like this, for a brief moment, I forget that all this is changing, that I am far into the tunnel of chronic illness. I know I am really lashing out at life, my unfair life, when I get mad with R, when I shout at him for not doing this or that. And oh, how much I really just need him to stop me, to tell me that all will be well.

This he cannot, will not do. And the last thing I want to do is blackmail him with my illness.
It is very tempting, but this is not his responsibility. Neither he nor me caused this illness and it is entirely my own body, my own burden. Harsh as it may sound, but believe me, pity can feel awfully patronising. Or maybe I haven't got the gift of accepting it properly, gratefully, to make others feel better.

Sometimes there is a wall between us that I can almost touch, the air is cold and hard and we try to fill with empty chatter, polite conversation. Carefully avoiding anything related to being ill. I look up and see this strong and energetic man, he is so well, so fucking healthy. While he carelessly pours himself another glass of red wine, we debate the upcoming conferences he may attend, one in Finland, another one on Mars or so it seems. Go out for a hike, I want to shout at him. Just like we used to do on a Sunday morning because we felt like it. Go and travel, explore, discover. Send me back pictures, bring me a souvenir. But it's complicated, confusing, and maybe I am not convincing enough, maybe I show a trace of regret in my face or maybe he feels a tinge of guilt in his mind.

How much I want to be done with this anger, with loss, with feeling hurt by what exactly I cannot even tell, and wanting to hurt back at what exactly I have no idea.


  1. I honestly cannot (and thankfully so) have no idea what chronic illness and chronic pain are like. You have given me a window, not only into the physical part of it (and honestly, you do not complain) but of the emotional toll it takes. Illness robs us of that which we do not even know we are so lucky to have until it is gone.
    And you are right- there is nothing concrete to rail against, to let your very-well-earned anger out on.
    How I wish this were not the way it is.

  2. The one good thing in all this - you have insight into what's going on. You understand your rage, and what it's doing to you and potentially to those who love you.

    If your surgery has a counsellor, or can help you find one, it might help. They are trained to support people in your position (though there aren't enough to go round). You have a right to be angry, and to rage against everything that is happening to you. It might just make things a bit easier if you can find a way to dump some of that outside your family.

  3. Oh Sabine. I hear you. When my mother was so ill, I tried my best to understand what she was going through. But there were days when we were living on fumes of feeling and waves of emotion. Writing helped us both.

    Keep writing!

  4. I'm so sorry you have to navigate this. I hope writing it out here helps. I am here, bearing witness. Love.