Seven Years On - (UG)

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Official UnderGuide Entry

There's something that I finally feel able to talk about. Perhaps it's because I've been around here long enough to be known for other things. We all have experiences that define us, but we don't necessarily want to be defined by those experiences. At least not until we're ready to tell the story in the right way.

More probably, I'm ready now because the time is auspicious. Our son Alex died seven years ago to this day, a few weeks short of his fifth birthday. He was at the same time the greatest joy and the greatest heartache of our lives. He suffered from a rare genetic condition that resulted in severe learning difficulties, and in uncontrollable epilepsy which eventually lead to his death. He never learned to walk, and he never spoke a recognisable word.

That was the downside. The upside was that he was the happiest person I'll ever know.

We suspected that something was wrong from the first weeks of his life. The diagnosis, in the week of his first birthday, was a relief as well as a shock. It opened up many channels of support. It brought us into contact with a wide spectrum of caring and understanding people, including many facing experiences far more harrowing than our own.

We never sank into the isolation that traps many special-needs families. We were never reclusive, in large part because of Alex's disposition. No-one ever shrank from being with Alex. He was affectionate and responsive. He was good-looking. He laughed like a drain all his waking hours. He was an overgrown giggly baby, and people found him irresistible.

He was hard work, though. For most of his five years, our social life was non-existent and we were always short of sleep. Alex himself slept a couple of hours a night, at most. Both of us worked in fairly high-powered jobs, and it was tough to cope.

Everyone in his family has a personality which was influenced by Alex. His big sister doted over him, and will always be a compassionate, Florence Nightingale-kind of a person. His little sister has an independent, hard-headed streak that surely results from practically having to bring herself up in her infant years. After Alex, my wife reassessed her battle to be a model mother and a go-getting businesswoman at the same time. I think she's reconciled now, and she's finally at peace with her ambitious side.

And, for a while, my own character changed completely. My job demanded travel, planning and directing in large measure. I actually got better at doing it, according to most of my peers. I reached levels of decisiveness and purposeful leadership that I will never achieve again.

I won't achieve them again because I don't want to. In many ways, the person I became frightens me now. I was driven by anger at the injustice that had befallen my son and my family. Almost no-one challenged me - they knew what fuelled me, and it scared them. I had successes and disasters, always at great intensity and at juggernaut speed. I made a lot of the people I dealt with during that time very miserable, and most of the others just grateful that I'd passed them by. Those years were one hell of a ride.

Alex's death came as dreadful shock to us. That we didn't see it coming from a long time before is hard to understand now, but we were living on autopilot. I think it's probably a mercy that we were so blind.

As a result of Alex's life, we all learned some profound lessons. One of them in particular seems to me to be worth recounting. It might help others. I hope so, anyway.

Suppose something similarly traumatic, or maybe worse still, were to happen to you. You probably think that you wouldn't be able to cope. But in practice most people can cope with just about anything; we're just made that way. If you were to suffer a trauma, you would develop a shell to protect yourself. You would be difficult to help, try as people might, because you would withdraw inside the shell. At that early stage, surprisingly, you maybe wouldn't need much help. There comes a point, though, when the person inside the shell needs to come out, to start living again. At that time the shell can become a prison. That's when you need the help and support of others most of all.

There are many people in this world who are full of bitterness over what's happened to them. You mustn't despise them. Offer your friendship and support, and stick it out, even though they bite the hand that tries to feed them. Someday they will seek a more positive way to deal with the rest of the world, and they'll try to break out of the shell. You have to be there for them then.

I'm afraid I know what I'm talking about. Until three or four years ago I was bitter and cruel, and perversely and unpleasantly proud of it. That was the shell I made for myself. I needed to be like that for a long time. I couldn't properly face up to a lot of what was happening to myself and to my family, so I suspended deep thinking and let myself plough on like a kind of robot. The trouble was, the single-mindedness crowded out my compassion and conscience as well as the trauma. Then, as the trauma receded, I was stuck with a repellent character. I didn't realise it, of course, because the shell had done a very good job. But that's how I was.

My shell was built during Alex's life, but it also protected me as I absorbed the shock of his death. At least it did at first. As the months passed, my wife and I came to understand that one of Alex's parting gifts was, literally, to give us back our lives. But I couldn't accept that gift. I didn't know it, but I couldn't. I had an uneasy feeling that I wasn't living my life either in the right way or to the full, nothing more. I'd worked hard to convince myself that I was OK, and that I'd come through it all. But people still treated me very warily. I was starting to feel very lonely, and I was slipping into a spiral of bitterness. I was starting to behave in a very self-destructive way. Only now do I understand that the shell was in the way.

A lot of people helped me to break it. Some of the kindest people were never told about Alex. I just couldn't, but fortunately they were friendly anyway. One reason for writing this piece is to assuage some guilt about my never having thanked them properly. And of course my family were the greatest support of all, not least Alex himself, still there in everyone's memory, smiling away.

A few times I slipped back into the shell, and mauled people who were only trying to welcome me into the daylight. It's a hard habit to break. I'm afraid I still slip back from time to time, even now. But at least I now know with certainty that these are temporary aberrations. All the reflections are finally happy ones.

I know that my employers are displeased at my reversion to the old feckless, self-indulgent work-style. They have some justification, too; they cut me a lot of slack at the time that Alex died. They've been good and understanding and all you could ask from a firm, but I know what counts most now. The best job in the world only ever comes second in a well-lived life.

If you ever have to get through a tough time, so tough that you feel numb, my advice is to cry on every shoulder offered, plus a few that just look as if they might be. I can't claim the experience to substantiate the observation, but I know intuitively that the less you cry at the time, the thicker will be your shell.

If it all seems too much, then believe this. There are people all around you who want to give you whatever support they can, only qualified by your readiness to accept it. They all love you, in their different ways, and you would be amazed how numerous they are.

That's maybe enough advice. I'm not a sage, nor much of a counsellor. The last words here properly belong to my family. For the duration of this piece at least, my beautiful wife (who's away from home tonight) is neither seal nor trout. Our daughters (who are tucked up asleep) are children, not seal-pups. Grandparents may or may not be on-line. I'm a man, for once, and I love them all. We've lived this together, guys. You've been amazing.

And on this most meaningful night, as I type and weep and smile in the very room were once he slept, Alex is just the same as he's always been. We understand each other, Son, at the simple level that you lived your life. That revelation was probably the most important of all the wonderful things you showed me. In the end, that's all there is, complete in itself. And it's all there ever needs to be.

Have a peaceful night, little man.

23rd January 2003

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