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‘You must be used to it by now.’

Giorgio Armani Spring 2017 Couture

Giorgio Armani Spring 2017 Couture

‘You must be used to it by now.’

Having lived with the massive lifestyle disruption caused by chronic neurological paralysis for almost twenty years, people often say this to me.

Sometimes in hope, that their own, or their loved ones, trauma will be more manageable in some way by the passage of time. Sometimes to diminish my situation in comparison to their own trauma which I cannot ‘possibly imagine the horror’ of. Sometimes, well who in hells knows why you’d say that to someone who’s gone through a trauma: social awkwardness, perhaps.

Generally, with the, er, wisdom of the time I’ve had to deal, I am able to reassure that, yes, over time, given time, we do adapt pragmatically, find ways to cope with our new circumstances and create a new, if different, life worth living.

Yes, I say, the acute horror of your unwelcome change-caused-by-illness is, in the moment, the worst thing ever. I understand that, now, in a way I didn’t early on, absorbed in the trauma of my own illness.

There is no absolute comparative scale of the worst health experience ever. The worst thing that happens to each one of us is the ‘worst thing ever’ because that’s our own measure of horror which cannot be exceeded by anything in our own mind or by anyone else’s experience of anything else, however severe.

Sounds crazy, I know. Objectively it is a crazy statement but … at it’s most humorous level, it’s the man-flu that someone is ‘dying’ of; the specific pain that you cannot imagine; less funny is being told that it’s ‘so much worse for me than you because you’re used to …’

What? Pain/illness/being in a wheelchair/being dependent/ housebound/losing the life I had and the one I expected.

Not really.

But, I grit my teeth because these conversations aren’t about me but about you, whoever you may be. You want to know it is, or will be, okay and I can give you that, at least to some degree.

The brutal truth, of course, is that your situation may not be okay – we all die. Life is terminal. We will all need to face that at some point.

However, getting ‘used to’ a changed life happens when terminal is not immediate but enforced, unwilling, change is, and, honestly, you don’t get used to it. Not ever.

Not if what you had was great and your changed circumstance is bound with restriction and difficulty. No one gets used to that. The experience changes us in profound and practical ways.

Most of us, after the initial shock, work to find the best life possible in our changed circumstance. This may, hopefully, lead to a life that even seems … not unpleasant to others, and to you. Luck doesn’t fully desert anyone. Life may be better than you feared at your lowest points. Good times may continue to be had but …

Well, I’ve best expressed what I’d like to say on this below, reposted from my Plus Black Blog: Giorgio Armani Spring 2017 Couture:

There are so many other things I should be doing today but here I am, again, looking at Haute Couture to die for: Giorgio Armani Spring 2017 Couture.

The reality of my life is that, like so many, I live with chronic illness, much unpleasantness and, consequent, enforced mundanity. It happens.

Mostly, I’ve put aside former life aspirations, tampered down my aesthetic senses, corralled the vivid landscape of my dreamings and imagination. I do these things so that I am able to be happy in this moment, now, with what is possible and controllable but …

Just sometimes, I see …


The wildness flares, I yearn to be me and, today, I’d be wearing flaming orange, above, by Armani Couture Spring 2017.

Glittering. Glistening. Gorgeous.

To Dream On 💋

When it’s not the end of your world, you live with your losses, as many others do with all manner of tragedy and crises, because you have no choice. You go on, packing the pain away in a tight-lidded box of ‘what was and is no more’. Work around the box. Ignore it. Pretend it doesn’t exist.  Slam the lid down when it threatens to come off.

It looks, to others, as if you’ve dealt with it, got used to it. Used to losing the essence of so much that you were, that life was: your life that you lived and loved.

‘You must be used to it by now.’

No. Really, not. Just coping as best I can here. And so will you, if you have to. It’s what we all do. That’s life.

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