Naturally, there are many explanations: before our separation, her mother had almost succeeded in teaching her, or at least we had reached a phase where we only used diapers at night. But the breakup abruptly set her development back, and all the gains from the long and persistent training disappeared instantly. For a while we tried to keep insisting, but even in the special school she attended (I’ll write a separate part about her education) – even there, where three or four specialists took care of groups of five to eight children, the continuous work of cleaning Lea became too much, and in the end, everyone somehow resigned themselves to the inevitability of this fait accompli. So life went on like that until she turned eighteen: changing diapers five times a day, cleaning, washing, bathing, constantly. It’s not as bad as it might sound – one gets used to it very quickly and starts doing it like any other task: one-two-three, all done, now off you go to play again. But God forbid you forget – because she gave no signals whatsoever, and if you happened to be distracted, the mess was considerable. Well, overall, it was manageable.

But there was a far more serious, far more dangerous issue that nearly cost us everything more than once…

The problem of stool withholding and the accumulation of massive amounts of faecal matter in the digestive tract is well known among children and adults on the autism spectrum. The causes of this seem relatively simple – no complex psychological explanations are needed, as far as I know. They simply develop a fear of the pain that defecation can sometimes involve, especially if it hasn’t happened for several days. This leads to an automatic process of withholding – for as long as they can endure it. In Lea’s case, all of this was compounded by a congenital bowel sluggishness – something we supposedly knew about relatively early on, but we never imagined it would bring such grave risks to her health and even her life.

The first incidents go back to her earliest childhood – around her second or third year. The child would simply stop pooping, and we couldn’t get her to go in any way. Then at some point, maybe even after weeks, she would pass – or rather “produce” – something like a giant coconut. Anyone can imagine what that must have been like for her.

Thank God, these episodes were relatively rare. Or perhaps it would have been better if they hadn’t been so rare – then maybe we wouldn’t have ended up facing the drastic experience I’m about to describe below. Either way, I had completely forgotten about those earlier episodes and was just “taking care of her,” without paying particular attention to the fact that sometime in the autumn of 2007, she had started withholding again. And this time, not just for a week or two. If I recall correctly, it lasted an entire month. I kept wondering, hesitating, but had no idea what to do – and simply waited, day by day. Her mother, quite unusually, also didn’t seem to have noticed anything, since Lea only stayed with her on weekends…

And so we got to the day I picked her up from school, and she was just barely alive. Not screaming, not crying – she never did those things when she was in pain – just gritted her teeth and bit down on whatever was close. I remember trying to soothe her; we wrapped ourselves in a blanket and I massaged her belly like my mother used to do with me as a child. But nothing helped, brother. She just moaned and rolled her eyes. At one point she bit down on the blanket with all her might and clamped down, clamped down, clamped down. I got properly scared and asked: “Lea, sweetheart, do you want to go see the doctor?” Normally, at the sound of such a suggestion, she would immediately jump up in protest, but this time she just moaned and nodded – yes, yes. I grabbed her and rushed to the emergency room – thank God it was nearby – and there a doctor pressed her stomach, hard as concrete, and when she heard she hadn’t pooped in a month, she almost spat in my face. “People, are you out of your minds? I can’t believe she hasn’t ended up with peritonitis! Off to the nurses, now! Give her an enema immediately!”

My legs turned to jelly – I no longer knew which of us needed emergency help more – but I dragged her to the treatment room, they let us in out of order, and that’s when the trembling began – this time with her mother, who had rushed over right away…

Well, we got lucky – otherwise I wouldn’t be telling this story now, would I? About half an hour after the procedure, Lea produced – or should I say gave birth to? – five or six balls the size of coconuts, amounting to somewhere between two and three kilograms of faecal mass. Hard, of course. The human body is a fearsome machine – how a little child can even manage such a thing, I still don’t understand. But facts are facts.

Oh God, I almost forgot to say that some time afterward we did, in fact, find a solution (the problem repeated once more, though less dramatically). Since then, Lea has been taking a daily dose of a laxative we are sure has no side effects. It tastes nice, it’s gentle, and it works brilliantly – you just need to monitor what’s going on. She just drinks it every day with her orange juice, and that’s that.

Well, I guess that’s enough. In the next instalment, I hope to talk about less awkward things. In any case, keep it in mind if you’re facing a similar problem. The devil is never out of work – that much we all know.

⸻ ❦ ⸻

Sometime in 2008 it began to be clear that something was off again in all our lives. In fact, I can only say this now – more than ten years later – from the position of someone who knows everything, or at least something, about what followed. At the time, hidden behind the defensive ramparts of my own self-preservation instincts, I either didn’t notice or else pushed the warning signs away, suppressed them, shoved them aside. And would anything else have been possible? I had lived through the greatest miracle of my life, had been granted a reprieve, had worked so hard to make myself into someone worthy of that gift… And now, once more, I had to admit – that is, first to realise, to understand, to accept, with or without grinding my teeth – that I was inadequate again, still failing to develop the skills, the capacities, the resources demanded of a person in such extraordinary circumstances. That my children needed something more, something different – something I clearly could not give them…

And yet so little of that time remains vivid in my memory. I don’t know how to convey it. I look at the photos from that year and see that the outward stream of our life went on more or less in the same direction, even in the same form, with the same familiar gestures – New Year’s parties (oh God, how depressing that 2007–2008 party was – I still shudder when I recall it), then trips of all kinds, theirs and mine, all manner of attempts to preserve normalcy, or at least the appearance of it. And underneath it all, it burned and burned and burned…

Poor Pavel – it pains me even more to think of him than of Lea. I look at his photos from that time – always standing tall, always hiding behind a strained smile – and I ask myself: how could I have been so blind? Not to see, not to feel, not to sense a thing? The boy was crying out for help alongside his sister, but in his own way: “Please, please, please, isn’t there anyone here who can feel how…” And there wasn’t. And there wasn’t. And there wasn’t. Now, when he tells me how at night he would cover his ears so as not to hear his sister crying from the lower bunk, how at some point he decided that the only way to go on was to accept, once and for all, that everything happening to him was simply unimportant, that it didn’t matter – and this at fourteen years old, oh God… Is it like that for all adolescents, or at least most? I know this is only an attempt at self-justification – but what else do I have, damn it? To turn back time? To make myself into some other man from back then, to sketch a different version of myself? Or to “draw conclusions for the future”? Drivel – conclusions, promises, plans. And the one above just keeps laughing…

The first truly drastic moment – the one that should have shown us all that something in the family order had gone deeply wrong, twisted, dislocated – came in August at Berlin airport. I was setting off for Bulgaria with both children, and their mother was seeing us off. Everything had long been arranged, everything seemed perfectly calm and routine, Lea had even declared many times how impatiently she was waiting to see Grandma Lina in Preslav and Aunt Maria in Sofia. None of us was prepared for the sudden storm that struck at the very last moment. We got off the city bus and headed toward the terminal entrance – and there she suddenly flew into a rage so violent that even we, hardened as we were by every imaginable trial with this child, were left completely undone. She threw herself to the ground, kicking, screaming, thrashing in all directions (with about an hour left before the flight). We tried waiting it out, but nothing changed. Then, as usual, I tried to drag her by the hand after me – and she clutched at my shirt and tore it…

Thank God Doreen was there with her unfailing instincts. “Go with Paul – Lea stays with me!” I had no time to think, nor did I need any. The child began to calm down at once when she realised she wouldn’t have to get on the plane. We all felt instinctively that this was the right decision – no one said a word. Now, far better informed about the realities of autism, we know that travelling – especially in enclosed spaces filled with other people – is a tremendous ordeal for autistic individuals, tied to overwhelming fear. But back then, we had invested so much effort in “training” Lea to travel by every conceivable means of transport. How could we give up? How could we have understood? The scenes of unexplained “rage” kept recurring – not every time, of course, not often enough for us to see that the whole thing was a colossal mistake. And so we went on living in the foolish illusion that it was possible to “modify” autistic behaviour, to banish the fears bound up with it. Should I repeat once more the words of the sage at the stake? Look into the eyes of that child – there you’ll find the answer.

So I set off alone for Bulgaria with little Pavel. But this time other warning signs appeared – coming from my own body. I developed a kind of rheumatic inflammation, almost certainly pure psychosomatics, that literally locked my shoulders for a while. I couldn’t raise my arms; every attempt, every sudden movement sent a jolt of unbearable pain. I remember my brother once took me and the boy out quail hunting: at one point I tried to jump across a narrow ditch – and I screamed so loudly that everyone came running…

I’ve spoken about all this in detail – even trying for a kind of philosophical, esoteric generalisation – in a television conversation with the much-loved Dr. Nedelya Shtonova, who at the time was hosting a programme on one of the Plovdiv channels called Before the Medicine. I can point you to it again if you’d like to enter more deeply into the atmosphere of those years and my attempts to find some meaning, some explanation for everything I was going through. But here I’ll continue with my story…

The final warning, which left no choice for anyone, came toward the end of 2009.

Lea began to refuse to go to school.

Zlatko Enev is a Bulgarian writer and publisher of the webzine Liberal Review. He has published seven books in Bulgaria (the children’s trilogy Firecurl, 2001-2005), the novels One Week in Paradise (2004) and Requiem for Nobody (2011), the collection of essays The Heat as the Embodiment of the Bulgarian (2010) and the autobiographical novel Praise of Hans Asperger (2020). His children’s books have been translated into several languages, including Chinese. He has lived in Berlin since 1990.