In sickness, you’re too much with yourself. The whole body burns with memory, the volume of sensation is turned up. You are filled with an excess of remembering. Your skin, wherever you touch it, says “I.” There are muscles here, yes, there are nerves here, yes, there is pain here.
Then the illness subsides and you go back to self-forgetfulness.
But for the chronically ill, this is what cannot be forgotten. Every square inch of one’s body is at all times crammed with "I," with self.
I am an old hand at this, I should think. But it floors me every time something happens that triggers a flare up. Which is where I am currently finding my miserable self. The usual coping mechanisms are in place, dividing up the day into tasks and rest and floating in between these stages with equal degrees of anger and resignation. Autumn does not help, not my season, neither is winter. I could go on.
And I hate myself for it, this over dramatisation of the person I think I am and the futile attempts to pretend I am not. The anger that rises up inside my head when I watch someone about my age being active and fit. The futile attempts to pretend I don't care. That lesson in my childhood socialisation training, the one about cheer up and who do you think you are compared to others who are far worse, it sticks. I crawl to work and pretend I am superwoman.
As for the covid, it feels like an oncoming tsunami at times, despite the detailed information we receive. Numbers are climbing, even the shittiest tabloid has by now dedicated a front page to what exponential growth means and why it happens and what we need to do to keep it as low as possible - and why.
The virus only survives because we host it. It floats in the air because we send it there. It's a people thing.
I live with chronic depression which is not the same as a physical illness but it dogs me, coming and going as it pleases it seems. I try to do the right things and still I find myself at the bottom of a dark hole at times. It pisses me off and makes me feel less than.ReplyDelete
I have a good friend in Australia who lives with chronic pain from endometriosis and many botched surgeries. I don't know how she keeps going. I'm not that strong.
And you my friend, although we've never met, you too are a strong woman who gets knocked down and gets back up again. None of us are kind when we're suffering, not even dogs who seem to me to be the kindest and most forgiving beings on the planet, even dogs lash out at those they love when they are in pain.
You're allowed to be angry, it sucks. As for COVID and stupid people, it boggles the mind and makes me angry as well.
I am sorry about the flare up. Sucks for sure. I do know what you mean about watching people your same age who are fit and active. I try to walk across the room without wincing with pain, but sometimes, despite me, I can't quite stand straight. It embarrasses me, this pain, this riddled body, listing to one side, which is weird, why embarrassment? I reach for acceptance of what is, but haven't grasped hold of it yet. Thank you for the honesty and clarity of these reflections.ReplyDelete
I am sorry you are suffering. it sucks. I wonder if these weird autoimmune diseases are new, a product of the poisoning of the industrial revolution and the adulteration of our food or if they are old as humankind and just now being categorized. I thank my lucky stars. be angry. it's OK. better to vent than internalize it. if I had a magic wand...ReplyDelete
Apparently, they are as old as humankind. People just died of it before immune suppression and mono clonal antibody treatments. Also, science had a hard time understanding the immune system (still has) and until the mid 20th century thought it impossible for a body's immune system to turn against itself, termed horror autotoxicus. Today, when confronted with a rare disease, everything is considered autoimmune until proven otherwise.Delete
You have endured so much, Sabine, and you rise back every time. I think of your days when you walk or bike ride for miles. You are still that person. After this challenging time of so much suffering, I believe with all my heart you will feel strong again. Your anger is utterly understandable. I am reminded of the line from Melville, "...I'd strike the sun if it insulted me..." Sometimes you just have to hit back, and hit back hard.ReplyDelete
With chronic illnesses there is much falseness. Others, watching on, say "He/she is being very philosophical." While the sufferer finds this almost as bad as being made to feel inferior for being an invalid. The view from the inside is quite, quite differentReplyDelete
One preserves a veneer of stoicism for various reasons but how often for the sake of those watching on? That they should not be disturbed by your illness? Rarely, I would imagine.
My wife is into a fourth year year with shingles. She has Googled and it's no go. Consulted doctors and (in desperation) the quacks and there's a conspiracy of silence. It's simply pain, no detectable deterioration; it arrives randomly and is triggered by deceptively innocent impulses. I sense she feels apart and that's almost the worst bit.
But you know all this. I'm told one infuriating aspect of being a chronic sufferer is that those you meet for the first time feel that the only possible topic of conversation is a detailed account of their own physical defects. So you get suffering twice over. I may have fallen into that trap.
No you didn't fall into a trap here.Delete
The thought of four years of shingles fills me with dread. Look after her. I am sure you do though.
That's a good graphic to convey the complications associated with this virus. Clearly physical, emotional issues can assault self-image, attitude and can complicate socialization. Chronic illness must be more challenging than the one-time or occasional medical issue. Coping through it all must get tiresome, to put it mildly, but you seem to have found ways to do so -- most of the time, so keep doing whatever you do.ReplyDelete
I'm just reading this now, many weeks after you wrote it. It is as if I've been hibernating myself, unable to read, respond, or write. I hope you read this. I hope you know how much I appreciate your writing and your honest assessment of your illness. To say I care just isn't enough.ReplyDelete