An outside observer might legitimately ask how it’s possible that I never discussed such a significant diagnosis with my wider family, but that would be to make assumptions about my ability to articulate my feelings about anything. In truth, I’ve barely spoken about any of the events in my life to anyone.
Significant events at school: no, after worries about bullying in junior school were roundly dismissed, I never spoke of it again. My friendless loneliness: nobody learned of this. On the way I was treated by a PE teacher — witness more than anyone to my spindly arms devoid of muscles — I was silent. Of the boys who would follow me around every lunchtime everyday, mocking and mimicking me, I said nothing. And my worries about my physical appearance, my weird face and my acute weakness: I carried this alone.
Significant events at college. I never told my parents that I had been referred to a counsellor for my extremely low mood. If they did know, they never spoke about it to me. I did mention the name of my best friend at the time, but they never asked me anything about him. I never spoke of the conflict which seemed to take over my life, although I did later write about it. Only one person ever knew of a threat I took to heart, and that was the person who told me. As for my feelings: these were spewed into private diaries alone.
At university, I only ever spoke of two events. The first, the time my mate and I were accused of breaking into the NatWest building on Pentonville Road, when I rang home to tell my dad, who advised me what to do should I be arrested and taken in for questioning. The second, the announcement that I’d become a Muslim. The time I ended up in A&E after a night of excess, I mentioned to my older brother, but he indicated I shouldn’t speak of it, telling me, “Your secret’s safe with me.”
In family photos, there’s a gap of nearly a decade in which I’m largely absent, coinciding with the first few years as a Muslim and the early years of my marriage. Naturally, those two events caused a lot of tension in the family. As siblings, we were all emotionally immature, and struggling to find our way through uncharted territory. My parents, who had dedicated their lives to the church, were extremely hurt by my conversion, taking it personally. And my siblings were angry on their behalf, perceiving my actions to be rebellious and deliberately unkind.
My diagnosis came when the turmoil of my conversion and marriage was very much still active. Largely thanks to my wife, my relationship with my parents had significantly improved by then, but my siblings were less forgiving. My beloved did partially discuss the diagnosis with my mother, which was a good thing, for through that my parents could come to see that my wife genuinely loved and cared for me. But as for me: I have never spoken of it directly with any member of my family. The diagnosis was too traumatic for me in the early days, and was then just pushed into the background as we focussed on raising a family of our own.
I think if my family had known of the significant events in my youth and the impact the chromosome disorder had on me throughout, they might look on my conversion and marriage in a whole different light. For them, this seemed to come out of nowhere, like a lightning bolt on a summer’s day. At best they could explain it as me falling under the influence of other people; there was probably a girl entangled in it somehow. How else to explain these sudden events?
To me, there was nothing sudden about it at all. It was all part of a continuum, stretching back at least a decade. The signs were all there on my forever youthful face and in my skeletal frame. Somebody should have picked up on these signs, but never did, for I could never articulate my own disquiet. Nowadays I sometimes think I now should, but the dominant voice within says, “What’s the point?” Our relationships today are thankfully much better than they were in earlier times. We all now get on fine. I don’t know that there’s any point offering a counter narrative to all that was once thought to be true.
In the end, we must just recognise that we have all chosen our own paths in life. My life now is with my soulmate and the two children in our midst. Only with my soulmate — once a stranger from a small village three thousand miles from here — could I discuss all that made me. Only with her at my side could I overcome this diagnosis. Thanks to her, I am no longer the gaunt man she knew at marriage, whom she nevertheless embraced. Thanks to her, the worst of the physical traits have subsided, the psychological overlooked and forgiven.
Perhaps I don’t need to discuss this significant diagnosis with my wider family anymore. Perhaps I am pretty much fixed.