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I had forgotten exactly when I was diagnosed. Yesterday I found out it was twenty-years ago this summer. So I was twenty-six, two years married.

Though I misremembered the timing, I’ll never forget that appointment. I’d been called by my surgery and asked to make an appointment. My beloved was at work, so I went alone. Our practice was a five minute walk from our flat. Wandering up the road just before my appointment, I could never have imagined the devastation that would hit about ten minutes later. That bombshell was dropped matter-of-factly by a locum doctor.

My GP was on holiday at the time. Would she have delivered the news more considerately? Might she have read up on the diagnosis beforehand? Might she have taken a moment to prepare me for the news, to soften the blow? Who knows? The locum was just cover. I guess I couldn’t expect much. So that was that: we’ve had the results of your tests. You have a rare chromosome disorder. You can’t have children. Then: I don’t know much about it really. You better google it when you get home.

Moments after that, I was stumbling back outside in a daze. It was on the nearest street corner that I called my wife on my mobile phone. With hindsight, I should have waited until she got back from work, but I was in shock, so just repeated everything the doctor had told me. Naturally, she left work immediately, racing home to embrace me.

It was a massive shock, but simultaneously not such a great surprise. I had known for years that there was something wrong with me. I had been a laughing stock for most of my adolescence, perpetually derided by nearly all who came into contact with me. I was incapable of building muscle mass, lacked energy and stamina, and suffered from serious anxiety issues.

So here was the diagnosis I could really have done with at sixteen, if not even earlier. The whole of that period leading up to diagnosis was pretty horrible. But we were in the middle of medical investigations into fertility at the time, so there wasn’t time to really understand what the condition meant for me. Instead, we were simply struck by an overwhelming, all-consuming grief.

That grief lasted pretty much all year. For me, even longer, for I carried with me a sense of guilt and shame. Of course, we may say that those feelings were completely irrational, but I felt responsible for failing to provide once more. First there were my fragile financial circumstances as a newly married man, and now this. For many a relationship, it could have been the final straw that finally broke a woman’s patience. But if anything, thank God, it somehow made us stronger.

Is it surprising that it took me nearly two decades to finally begin to come to terms with the impact of this condition on my life? Maybe, but it seems that only over the past couple of years have I found space to pause for breath. After the grief, came the inertia to pursue treatment, then fostering, adoption and raising a family, followed by health scares, education issues, and a late-starting career. Test after test, one after the other.

So it is that this thought now occurs to me: could it be that I’m still grieving?