Douglas Adams published The Long Dark Tea Time of the Soul in 1988. It is one of my favourites.
The title is a playful reference to the oh-so-serious poem written 400 years earlier by the Christian mystic, St. John of the Cross, The Dark Night of the Soul which portrayed the agonies of human existence as a long, purifying journey towards the light of God. Seems we humans cannot help struggling and straining to find some ‘meaning’ in the midst of life’s travails.
Here you see John gazing beatifically heavenward. I imagine him thinking, “Dude, seriously?”
For quite a few years now, I have endured what I suppose you could call a ‘long, dark night of the soul’. And, not being religious, I can’t imagine that it has had anything to do with preparing my wretched soul for the eternal paradise to come, or whatever John was saying.
Perhaps you are religious. If so, I sincerely hope there is some comfort for you in your beliefs. Even so, if you have experienced the life-sapping bone-weariness of caring for a profoundly disabled child day-in and day-out, year after year, you’ll relate to what I am saying.
I recall reading a recent interview with Jane Wilde, the ex-wife of Stephen Hawking. I was grateful for her honesty and courage as she described how caring for his needs as his motor-neurone disease progressed was so overwhelming that she eventually became suicidal.
I did too for a while there.
I have been at pains to make sure my son, Christopher knows that this sad state of affairs is not, not ever, no way, his fault. If anything, he has ‘cared’ for me more times than I can count – always expressing concern for my needs whenever he could. But, let’s face it: those who care for disabled loved-ones are not saints or heroes or superwomen/men (despite what well-meaning observers insist on saying). They are ordinary people who face extra-ordinary demands and they need all the help they can get.
So, the time has come. I have come to realise that I can no longer keep doing it. I hope some day soon to turn my face towards other pursuits for a while. One of those pursuits is to seek out opportunities to facilitate training in the use of Switch Control, Apple’s accessibility feature.
And here’s the thing…This is only possible for me now because of the opportunities for self-fulfilment, self-reliance and self-development that technology has afforded Christopher in the last couple of years.
There are many different kinds and degrees of disability that people face, and Switch Control will not help everyone. And I know that every situation is different; but for us, after such a long ‘night’, I sense a new dawn breaking.