26 March 2017

No supernatural powers
Need be invoked by us to help explain
How we will see the world
Dissolve into the mutability
That feeds our future with our fading past:
The sea, the always self-renewing sea.
The horses of the night that run so fast.
Clive James

After seven years I am almost used to living with this disease. Almost. In other words, I am not and I doubt I ever will be.
But there is such a strong desire to relax into this state of imperfection, of all the quietly murmuring threats and sudden periods of unrest, of never quite getting there, of frayed edges and dark holes I might drop into at any moment.
I want to feel all this without being frightened, without feeling diminished or less alive. Living with a chronic illness does not mean that my luck has run out. It's just a different kind of luck for me now.
There have been times - and now is one of them - where I have been so washed out and overwhelmed by symptoms and additional events and all the tests and treatments etc. that doing normal stuff ever again seemed almost impossible and as a result, it took me weeks and weeks to regain my confidence.  Last week the physiotherapist praised the way I can now spread my toes and hold my leg.  When afterwards I tried to explain this to R I could not find the same enthusiasm for what suddenly felt like only a minor achievement. After all, the recovery from the spinal surgery is as good as completed. In moments of weakness, I let out brief sobs of frustration, as I may never recover the full use of my right leg again but it feels more like a small mechanical glitch (as long as I can cycle). But in the bigger picture, the one where ANCA vasculitis rules, this is truly nothing.

No cure, only The Cure:

This  morning on the phone to S, I overheard R mentioning for the first time the possibility of me never going back to work.  I am not so sure, I shout.


Ms. Moon said...

Your words always move me. Inspire me. Touch and affect me.
I just want you to know that.

liv said...

I've been sick, very sick for quite awhile now and I often think of you and what you endure. I'm very glad that you don't sugar coat things. Sometimes there is hope and sometimes, it just all sucks.
Keep going, keep being your true self.

am said...

Sending love to you, Sabine.

Anonymous said...

A combination of minor achievements is what makes us whole again. Spread those toes, hold that leg! For the second time this week I am reminded of a few lines of Joni Mitchell's Judgment of the Moon and Stars:
...You've got to shake your fists at lightning now
You've got to roar like forest fire
You've got to spread your light like blazes
All across the sky...
Thinking of you and sending you the very best wishes for good health in every way, my friend.

37paddington said...

i understand this so well.

beth coyote said...

I resonate with this post. The small improvements, the subtle triumphs. Being in a body is so hard sometimes!! Always changing, impossible to hold steady.


Elizabeth said...

Even here, so much pain and your power just reverberates. It really does.

Zhoen said...

Some days, my back hurts. Every day it slows me down at least. Life leaves it's marks on us, and we escape with the scars.

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