It’s been an early start to a Sunday morning in the Cowley house. I got up early to be at the newsagents when it opened to pick up a copy of the Sunday Times. And Steven was prevented from his usual Sunday morning sleep in on account of a visitor.
The article in the newspaper included an interview I gave to the writer, David Collins, last week. The story is about a 24 year old autistic man who has been kept in a seclusion unit for four years. The article describes the hatch through which “A” is fed and medicated as his only contact with the outside world. It isn’t contact with the outside world though. It’s contact with a hospital corridor and a member of staff, passing a plate through the window. It’s a familiar, distressing story and the full article is here:
Why is there a mess in my head? I sat in my bedroom reading the piece, whilst Steven outlined his plans for the day with Francis, in the living room. The plan, after a bowl of Frosties, was to watch a greatest hits of 1974 VHS tape.
In the middle of the day’s timetabling, Steven’s next door neighbour, Martin, popped round. He is going to lay a laminate floor in Steven’s bedroom and needed to check the measurements. Steven was happy to see him and Martin greeted Steven warmly: “Hello, how’s my old mate, Steven Neary?” Within five minutes he had measured up and left with a promise to return midweek to fit the whole floor. On to 1974. The Sweet, Alvin Stardust, Suzi Quatro. Whenever Steven watches Sparks, he always internalizes that he’s the cause of Ron’s “cross face”. “Ron is cross and looking at Steven Neary because….” And I’m expected to finish the sentence and come up with an explanation for Ron Mael’s stroppy look.
The above paragraph is why my head gets into such a mess.
Steven’s life is pretty darned good. But it’s fragile. The fragility has got nothing to do with him; he isn’t the cause of why it is fragile. All that is good about it could quite easily disappear overnight and he’ll become again an “A” in a seclusion room. No friendly chats with Martin. No schedule planning with Francis. No Ron Mael getting cross with Steven because Steven didn’t save any Pringles for Dad. All those moments of joy could be consigned to the same history book as Devil Gate Drive.
It warms every cockle of my heart when the cab driver gives Steven a Christmas present as they get back from swimming. But there are knives in those cockles, that twist sharply whenever something good happens. An uplifting moment carries a down as much as night follows day. In my most messed up head moments, I find myself arguing with a disinterested seclusion room guard about how Steven might enjoy a few minutes in the company of Mr Stardust. The fantasy argument always goes the same way though.
This is life. It can be quite a torment. As I clear some of the mess away, I can find myself feeling thankful that there are people like Martin who is prepared to see Steven as a fellow human being.
One just has to take the rough with the smooth.