Monday, 27 June 2016

After the referendum diagnosis

I've been trying to explain my feelings this weekend. "Depressed" is what I said to one person on  Sunday morning. But that's not quite the right word. I think the best I can do is an analogy.

When I was diagnosed with a motor neurone disorder (MND), I was shocked. Thereafter I was living in a new world, a world I hadn't and would never have chosen, a world I really did not like. I knew some things about it, such as it would be life-limiting. The chances were that I would die quite soon, though I might just possibly be lucky and live a long time like Stephen Hawking, a life of ever increasing dependence and frustration. Whatever happened, my world was completely changed, and would affect not only me, but also my family, my friends and my colleagues. My job would be affected; my future would be different. It wasn't a pleasant prospect; it didn't promise better things. And I lived under that cloud for some time.

It's true that for me not all my worst fears have been realised. I'm still alive fourteen years later, for a start. But I've had to give up my job; my life is very prescribed. I'm very much a spectator and not a participant in what's going on. It's not that I feel sorry for myself (much). But I do know a melancholy disappointment at the increase in my isolation. And sometimes that initial cloud returns. I wouldn't say life is better now than before my MND, though it is still life and I'm still grateful to be able to enjoy it. As a family, we've just had one of those events which give me joy.

Among the good things some have arisen from ending up in a wheelchair. Not that I'd not far rather be able-bodied. It hurts like mad not being able to go with Jane on walks on the hills, along the coast, exploring cities.... It hurts a lot that Jane's life has to revolve around my needs and demands. I hate that she has to dress, drive, clean, push, cook, virtually do everything for me. But at least now I know what it feels like. So, I think, I have more empathy with the many disabled and discriminated against people in the world. And of course more understanding of facing an incurable illness. Those are good, if hard, things. Of course I don't know what lies ahead. Physically things won't get better for me. And I'm under no illusions that the NHS which has cared for me so extraordinarily well will suddenly receive a life-giving injection of cash as a result of departing the EU - the opposite, I fear.

So, after Thursday, I'm living in a new world, not one I chose, not one I like, but I shall have to come to terms with it. It's revealed a diagnosis of a fractured, disunited kingdom, with propensities to greed and hatred, and a national body whose parts are severely, if not terminally, out of sync with each other. I'm afraid I'm unable to share some people's jubilation about it. I don't share acquaintances' delight and conviction that "we have been saved by praying women". However, I've no doubt we shall survive and find some good redeemed from the sad mess of the past month (indeed years). I trust so, although I fear for too many it will bring only pain and grief. That's how I feel.

So it doesn't really help to tell me to pull myself together or to tell me that it will all be for the best. Nor that it's God's will - or his judgment. Just possibly you might be right, but it's not awfully helpful.

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