When your daughter theoretically starts to design the colour scheme for my custom-made electric wheelchair (I have not ordered one, for clarity), to enable me to attend her dance performance, you know that my world has turned once more. Yes, dysautonomia is back: worse – and yet better – and as baffling as ever.
After one month of passable, acceptable health, the weirdness returned. But for how long, I don’t know. Three months on and one month off: I’ll take that.
Genuinely, I am not down about it. I’m not! Saddened for its impact on others – sure – but as the only constant is change itself, we all must adapt. Moaning about it will only make the situation unbearable. Human’s adaptability has been the key to our success.
When some months ago the likely prognosis was the horrifying Addison’s Disease, I discovered that both JFK and Osama Bin Laden suffered from it. Neither lived long lives, but they were certainly eventful. My guess is that their condition turbo-charged their ambitions. They must have known that the condition had reduced their life expectancy.
Which reminds me – most pretentiously – of a letter which Proust wrote to a Parisian newspaper in answer to this question: if a scientist proved that the world was about to end in the near future, what would happen? His answer:
“I think that life would suddenly seem wonderful to us if we were threatened to die as you say. Just think of how many projects, travels, love affairs, studies, it—our life—hides from us, made invisible by our laziness which, certain of a future delays them occasionally.
But let all this threaten to become impossible forever, how beautiful it would become again! Ah! If only the cataclysm doesn’t happen this time, we won’t miss visiting the new galleries of the Louvre, throwing ourselves at the feet of Miss X, making a trip to India.
The cataclysm doesn’t happen, we don’t do any of it, because we find ourselves back in the heart of normal life, where negligence deadens desire. And yet we shouldn’t have needed the cataclysm to love life today. It would have been enough to think that we are humans, and that death may come this evening.”
This condition isn’t life-threatening, just life-limiting – if seen that way. Life is random. Live each day as if it’s the last.