Now I must take a deep breath. The moment comes when I must begin speaking about something that, at first, many of you will probably perceive as slightly off – or at least as a bit of frivolous originality: what is the reward of life with autism and autistic people, what is the privilege of being the parent of a neurodivergent (or otherwise impaired) child, what is – forgive the bombastic phrase – the universal meaning of all this “suffering,” this incredible trial? Because all of these things exist, they are real – oh yes, they are! They’re just hard to see and realise, especially at the beginning, especially when pain and despair are about to strangle you, and the only thing you’re capable of thinking or dreaming is: “Anything but this! Anything but this, no, no, noooooooo!”

Let me begin from a bit further back – please, bear with me. The education I received in my formative years was philosophy, so the things I’ll say here have a philosophical flavour. If there’s a danger that this might alienate you or make you think, even for a moment: “What a pity, I guess this is where it stops being interesting,” let me say again: please, have a little patience. The philosophy I practise is humane, comprehensible, and warm. Read on and you’ll see this for yourself.

So, in order to get to the question of the reward, I must start with one of the “theories” of the human and the human condition that I often reflect on – and sometimes use to comfort myself in moments of loneliness, fatigue, or just plain boredom. The human, of course, is something endlessly complex, but for the purposes of this reflection, I’ll simplify and reduce it to those two opposing characteristics of human nature whose contrast, mutual friction, and struggle make us who we are. I’m talking here about what is sometimes called our “outer self” and its reverse, the “inner self”.

The outer self typically defines and directs the active side of our lives. It is the ambitious, combative part of our nature, oriented toward success and gain. In itself – just like its opposite – it is neither good nor bad. It wants to build, to create, to produce, to change the world for the better. It wants to achieve the highest possible status and, naturally, an endless string of victories.

The inner self is preoccupied with the deep, difficult, and often confusing aspects of our lives. It wants to live in accordance with certain moral principles, to always find the balance and boundary between good and evil – and to do, if possible, only good. It seeks to discover within and beyond life some universal truths, transcendent values, higher principles. It wants to be valued not because it has achieved this or that, but because it lives rightly.

Needless to say – combining these two aspects of our nature into one is something that rarely happens “naturally.” The outer self pushes forward and wants to overcome all obstacles as quickly as possible; the inner self tightens the reins and insists that no human goal justifies all means. The outer self hits the gas, the inner one stubbornly holds down the brake. The struggle between them begins early and in principle never ends. Blessed are those who manage to keep these two opposing forces in balance and peaceful coexistence.

It’s not easy – we all know this. And it’s not easy not just because, as the saying goes, there is no free lunch. It’s not easy mainly because we live in a world that does everything it can to encourage the outer and disregard the inner self. Tell me: how many times in your life have you opened your mouth to defend something “right,” “noble,” or simply “beautiful,” but stopped instantly for fear that someone on the other side would retort, “If you’re so clever, then where are your five bucks?” How many times have you suppressed the voice of your inner self under the pressure of the general consensus that it’s only the scoundrels who thrive in this world?

Right. Enough theory – it’s time again to tell you things that have happened and continue to happen to me (to us). The thing is, of course, that before Lea was born, my life – Doreen’s life, even little Pavel’s – had already passed through hundreds of thousands, millions of moments in which we constantly made decisions. And as you’ll see below, the decisions I made in the years just before her birth almost always favoured only the outer self. And Lea changed all that – radically, mercilessly, and I hope, forever.

I’ve described the years just before and after my arrival in Germany elsewhere, so I won’t burden you with all that again. But I must explain that the change of country and culture led to a sharp turn in my otherwise rather modest life, filled mostly with books, thoughts, and dreams. To put it as directly as possible, the outer self suddenly took the wheel and floored it, pushing the inner self far, far into the back seat (and that poor thing, having barely ever faced serious competition, pretty much gave up without much of a fight and disappeared from view for a while – despite the philosophy degree and all that). So I really went wild: in no time I found an interesting and well-paid job, soon after started my own business, began earning the kind of money I’d only ever read about in books – and in the process, I almost completely stopped beating my head over questions like “what’s more worthy of the soul?”…

And so, almost without noticing, very easily, and oh-so-pleasantly, I began to turn into something hardly distinguishable from the proverbial contented pig. In Germany, it was still tolerable – I didn’t have much time to show off, thanks to work, and even if I had wanted to, who was there to impress? Our entire social circle at the time consisted of people at more or less the same level, and the culture is predominantly Protestant – people aren’t exactly fond of that kind of showy success which, clearly, determines everything in my homeland. In Germany, then, it was bearable – but you should have seen me back in Bulgaria! Not that I drove a big car – in fact, I’ve never owned a car in my life – but just seeing how everyone looked at me with this admiration, this reverence, this desire to please me, to win my favour, to gain my attention… Good Lord, the shame still rises in me like bile.

It was 1995. We arrived in Preslav as a whole delegation – the two of us with our brand-new son Paul (named after his Bulgarian grandmother, albeit with a German gloss) – plus Doreen’s parents – for the first encounter with my people, my place, my origin… A whole circus. My folks wore themselves out with endless running and expenses – lambs, banquets, songs and dances until midnight – we nearly killed ourselves with feasting. And I, freshly minted German bigshot, went about handing out fifty-mark notes to this or that poor relative (back then, for them that was a month’s living). Just look at me!

So there I was, strutting like a rooster atop a pile of cow dung, my little soul fluttering and fluttering. Who else was like me, a man of success, eh! And I made sure to emphasise it, to demonstrate it, and to savour it like a mellow rakia. Pure bliss!

And one year later, Lea was born. And that was only the beginning.

⸻ ❦ ⸻

Another big leap – the year is 2005.

Things between Doreen and me hadn’t been going well for quite some time. I don’t know whether all happy families are alike while each unhappy family is unhappy in its own way – it might be so, because I don’t really remember us being all that unhappy. There are statistics, apparently, that show in black and white that in families where misfortune strikes a child – a disability, an accident, or worst of all, death – the divorce rate is much higher than average. Our experience turned out that way; others have different outcomes. But to me, it’s undeniable that the tensions that life with Lea, as she grew up, placed on us, increasingly set us against each other.

It’s not like we had huge fights or screaming matches – neither of us liked that. She, being German; I, because I grew up right in the middle of it. My parents tore each other’s heads off three times a day, weekday or holiday. How they stayed together is beyond me. But with us it was different – cold, ever more silent, ever more distant. You know that Pink Floyd song:

Day after day,
love turns grey
Like the skin
of a dying man…

That’s what our shared life had become – caught like a portrait. And since we were both responsible people, deeply committed to the idea that we wouldn’t do to our children “what was done to us,” we strained till our eyes were about to pop out to be good, decent, present parents. And we did it so well that no one wanted to believe it when we separated…

 

 

 

Well, we strained and strained… But you can only force things for so long. I mean, if it had been up to me, we might have plodded along to some grey, joyless, hopeless end. But Todorka (that’s what I call Doreen in my internal monologues)… Well, Todorka turned out to have more courage than I did – and at some point, she simply took the leap and ended our shared life, despite all my fears, pleas, and desperation.

Tragedy? Or just banality? Each to decide for themselves. In any case, the next phase of my personal (re)Éducation sentimentale began in May 2005 – and off it went, downward, downward, downward… Or at least that’s what I thought at the time. Let’s see now if I can convince you of what I only learned to believe many years later: the worse for the ego, the better for the soul. A bit of a philosophical notion, slightly crazy. But I can’t imagine any other way anymore.

I told you – this is the story of a family. And we still think of ourselves as a family (including Klaus, who a few years later became a wonderful second father to Lea). But there’s still much to tell before we get there – and not just trivialities. Because this is where things began to happen that, for me, are nothing short of miracles. Magical, miraculous things began to happen.

First: I died, and then I came back to life – or at least, I was granted a second attempt. Not in three days; in my case, the procedure took several months.

Ha-ha-ha, a cackle from the audience. Let’s see then what really happened.