Do Not Look Back

I made two mistakes earlier this week.  The first was at one of our (now very occasional) family therapy sessions.  The therapist had seen a lot of myself and Joe before Julie went into hospital, but there had then been a long gap of almost a year before we saw him again.  Understandably the therapist was anxious to find out how we were coping now, and asked about the problems we were having supporting Julie after discharge.

A lot of the conversation meandered around the subject of work - something Joe worries a good deal about, and about which I should perhaps worry more (if I were not so absorbed in caring for Julie).  It was only in the last five minutes of the session that I began to warm up and talk about the more general problems.  I began to explain how I hated the fact that I could never be relied upon by anyone now, no matter how much they needed me - how nothing, not family, nor work, nor a sick friend, could rely on me because at any moment I might be dealing with an emergency.  Everything else in my life has become of lower priority, and inevitably that can be hard on the people around me.  Apart from the few friends I have been able to confide in fully, most people do not know the precise nature of Julie's illness, and this causes a great deal of confusion and resentment: amongst colleagues who have to pick up the pieces for me time and again, amongst family who I never visit, amongst friends whose calls are not returned.  Every now and then even her brother flashes out in sudden frustration, "You never have time for me now!"

It was the end of the session, and I had to stop myself.  It was only the next day that I realised how easy it had been to open that box, and how hard to reseal it.

I made the second mistake the same day.   Having the unexpected luxury of half an hour alone on the computer, I flicked back through the photograph catalogue. I have tens of thousands of photographs stored there, dating from when the children were very small.  Suddenly, there was the old Julie, laughing or pouting or gurning for the camera, turning hand stands on the lawn, posing in a new outfit.  Here she was: tall for her age, charmingly angular and awkward as foals are, full of life and enthusiasms.  The most heartbreaking are those taken in the spring of last year, just before illness engulfed her, just turned fourteen, arm in arm with friends, all looking confidently into the eye of the camera, full of hope for the future.  Impossible not to compare her with Julie now: the psychosis barely contained by drugs, her thickened waist, her legs a mass of scars, the pronounced tremor in her hands, the way she moves and thinks slowly.  Where she was mercurial then, she seems ponderous now.  Must not compare, must not look back!

But these feelings must be allowed.  I recall the grief that Joe and I felt many years ago when Duncan was first diagnosed with Asperger's Syndrome.  How that diagnosis was both a relief, bringing meaning and order to the chaos, but also a cause of so much pain.  How long it took us to accept it, embrace it, stop trying to reject it.  What we never expected, what no one would have expected, is that our other child would also face huge problems before she was out of her own childhood.  We have to give ourselves time to adjust, acknowledge our grief, even as we learn to live with the situation.