The thing is, when you are caught in the loop like me, the loop of chronic illness, that never ending hamster wheel, you are generally expected to be either noble or depressed.
Noble in the sense of, look how she copes, look how she finds meaning in every day things, look how brave she is, but most of all, look at her sense of humour.
Depressed as in downtrodden, slow, sad, withdrawn, but most of all no fun to be around.
Mostly, you are expected to be both.
Things get even harder when you don't look ill. But that's for another day to discuss.
Oh, I could write a book about the supreme efforts of schievement and the wasted days of doing nothing at all. It would read like an ancient lament. Or like one of these self improvement tomes, complete with a set of motivational calendar wisdom cards, a whale sound dvd and a wall chart of pilates exercises.
However. I mostly ride the waves of sarcasm and distraction. Pretend there is nothing to get hung about. Be fucking jolly. Don't dwell and for goodnesssake, don't be such a drip.
22 March 2018
To insist on life's being life and recognising that it could easily be less but shouldn't be.
Richard Ford
Rain and sleet, cold north wind. I get up and make tea. I go through the motions of a normal morning but something isn't quite right. My muscles ache, my hands will not hold this mug firmly, my taste buds are numb, I feel ravenously hungry and yet, the food on the breakfast table makes me gag. The voices on the radio are too loud and my eyes, my eyes, my eyes just don't want to take anything in.
My head, however, is full of thoughts and plans, swirling with distant images and ideas, potential.
Alas, the effort.
Day one after the seventh monoclonal antibody therapy. This is what it's like when approx. 90% of my overactive B-cells have been told to disintegrate for a while so that whatever ongoing inflammation they have been involved in is shut down.
How innocently we thought that this was it, winter was well on its way to outer Lapland or wherever. Little did we know. The wind has turned yet again from west to east and rain is slowly looking like snow.
This winter has done something to me, I can't put my finger on it yet. But I feel I've crossed into a new terrain, a sense a resignation. I couldn't tell what it is that I've lost but I feel it. The loss, a gap, like taking a breath and not getting any fresh air, just standing there waiting for it.
My immunologist called me four times in as many days with instructions and results from our last appointment. Because. The treatment of shitty-diseases-that-will-not-go-away follows protocol. And I tend to question some most aspects of it. As in: why should I have to take a prophylactic antibiotic that is contraindicated for people - such as myself - with a known history of gut inflammation? And being the good doctor she is, she assures me that this will be discussed with the experts and in the meantime, I better not take it. So we go back and forth in our merry ways.
This morning I almost asked her, what do you really want to tell me, but of course that was all in my mind. After a night of dramamine-induced swirling in space, I tend to be a tad otherworldly.
Anyway. Spring. Can't get its act together yet. So I am stuck with winter thoughts. And I was reading Colette's post about visiting a psychic and briefly, I encouraged various ideas of the metaphysical and the spiritual and the religious world.
I was raised by atheists and in my teens, experienced a short-lived infatuation with baptists, the benign European variety. After a few months, it got too tedious, no heavenly father ever spoke to me and getting up early every Sunday lost its appeal. Also, my parents took no notice at all, which somewhat dampened my enthusiasm. But I still know most of the songs!
My secondary education was heavy on philosophy, ancient philosophy, Plato's cave allegory and so on. I was not too keen, at age 15, my mind was on other things. But I went through the motions and yes, it does something to you. The concept of a rational mind, reality and illusions. And before you know it, religion becomes something irrational, fed on myths, unconsciously experienced 'certainties', read tea leaves.
After a while longer, this happened:
I realised that there is no god. And not because my father always said so. And it got worse. I realised that the belief in a person-like god tempts us hand over our responsibility for our life and our world to some imaginary institution beyond our understanding. In other words: a cop out.
But there is something I would - for lack of words right now - call the god-like principle, the good that is incarnate in humans. (And in turn, there is no devil, no hell, only bad deeds done by humans.)
I admit that we cannot exclude metaphysics. It's actually exciting. I adore the thought that that there is something beyond our limited concept of reason, our rational and careful experiences. If we need to call it anything (yet I think we maybe should not have to) I suggest something along the lines of "always question yourself".
Because we, and we alone are responsible for this life. That's our terrible freedom. I can understand that this can be unbearable for some, at times I wish I could cop out, too.
Once we had regurgitated the classic philosophers for seemingly ever, we jumped to the critical theorists and Adorno in particular. I may have missed out some stage in between, I was often extremely tired in class for obvious reasons. But I managed to stay awake for an entire term dedicated to watching and discussing the replay of a seemingly ancient televised debate (1965) between Adorno and one of his adversaries (Gehlen) on the nature of human suffering and human violence. First they go back and forth for ages defining this and that in their clever words - the language and terminology of philosophers and sociologists is out there with Finnish or Hungarian (no offence), i.e. quite impossible to grasp.
And at some stage half way through, Adorno said this:
I
have a particular conception of objective happiness and objective
despair, and I would say that, for as long as people have problems taken
away from them, for as long as they are not expected to take on full
responsibility and self-determination, their welfare and happiness in
this world will merely be an illusion. And will be an illusion that
will one day burst. And when it bursts, it will have dreadful
consequences.