I am on the phone, talking to one of my telephone friends (this one has fibromyalgia and an autoimmune disorder and she lives in South West London). She is describing how badly she is affected when aircraft fly low over the house; it is getting so bad she may have to move, with all the disruption that entails.
And I feel it starting. Deep down in the centre of my brain: the embryonic stirring of a question mark, a tiny curl of doubt.
Aircraft? Really? Surely things can’t be that bad…. It’s a natural human reaction. Then I remember my own experience. I am ashamed, and I immediately suppress the thought.
For so many years, my situation was so rare, extreme and unusual that when I described it to people, often in an attempt to seek help, the response was usually incredulity. Somebody once said that three of the most powerful words in the language are “I believe you.” Their implied opposite is no less powerful. Repeated over and over again, the incredulity became a sort of psychic flaying, a periodic acid bath on top of the agonising burning of my skin.
I learnt all sorts of things during my years in the dark. I learnt how to locate and identify clothes and talking books by touch; how to find ecstatic joy in being well enough to clean the loo; how to sift, from a day of crushing boredom, a tiny nugget that might make my husband laugh.
The biggest lesson of all has been the importance of listening – really listening – to what people are telling me; keeping my mind open, no matter how what they are saying differs from my own experience of life; resisting the temptation to pull up the shutters of scepticism and think “this cannot be”; remembering that we understand only one small part of this wonderful, terrible world.
I needed this so much. And I’m just immeasurably, immeasurably grateful that the people closest to me gave it, absolutely, freely and without question.
I know many others are not so lucky.