Monday 12 November 2018

Life in a sister's shadow

Juliet Butler on how she came to write a novel based on the lives of Russian conjoined twins

Locked away: Masha and Dasha — seen here in 1989 — had very different personalities
Locked away: Masha and Dasha — seen here in 1989 — had very different personalities
Juliet Butler
Masha and Dasha
The Less You Know the Sounder You Sleep by Juliet Butler (Fourth Estate, €14.99) is out now

It's not every day you get to meet conjoined twins, so as I made my way up to the room where 38‑year‑old Masha and Dasha Krivoshlyapova were waiting for me in Moscow's Dental Hospital, I was just a little bit jittery. It was 1988 and I was living in Russia at the time, having gone out to work as a nanny for the British Embassy and inconveniently fallen in love with, and then married, a Muscovite. He was indefinitely refused permission to leave the USSR as he had served as an officer in the army during the Soviet invasion of Afghanistan and was considered to hold State secrets.

So six years later, here I was, now a freelance journalist, standing outside a door marked "Strictly no entry", notebook in hand, preparing to interview the twins about their public appeal for better living conditions. I didn't realise then that this was to be the start of a close, lifetime friendship.

I had first seen them a week earlier on a TV chat show aired to 100 million people across the USSR. I'd been standing doing the ironing with my newborn baby in her cot, when they appeared on my screen recounting how they'd been locked away for the past 20 years in what was then an institution for the insane. But, having been sent to this dental hospital for treatment, they were now planning their great escape. And I was part of it.

"Come on in," two cheerful voices piped up from inside. As I opened the door, they jumped up from their bed and walked over to put the kettle on, chattering away to put me at my ease, because apparently (they told me) some people faint from shock on seeing what appears to be two people from the waist up and one from the waist down. They had one leg each and one reproductive system, bladder and colon and had separate spines, small intestines, hearts and lungs.

Yes, conjoined twins are rare (one in every 200,000 births, but many are stillborn) and can look disconcerting - for all of two minutes, until you get to know them. "Well," I said, after we'd been chatting back and forth about my former life beyond the Iron Curtain. "You must get very fed up with being asked daft questions like 'What's it like to be conjoined?' They stared at me confused. "What does conjoined mean?" asked Dasha. It was then that I first got an inkling that the truly shocking thing about these two characterful and intelligent women who happened to share a body, was the profound isolation they had been subjected to in the closed institutions they had been locked away in all their lives.

Their ignorance was astounding. They had never been told anything about their medical condition or how to cope with it. In fact, as it later transpired, they had also not been told that they'd been taken from their mother at birth to be experimented on by Stalin's scientists or that their mother was told they had died because she refused to give up custody. Instead, they were told, as all Russians were, not to ask questions. As the popular Russian saying goes: the less you know, the sounder you sleep. I stared at them in amazement.

"Umm, it's when one embryo fails to completely split into two identical twins," I faltered. "There's nothing identical about us!" Masha retorted. "We're completely different people. We must have become joined together somehow."

As I got to know them over the following 12 years, it became obvious how different they were. Masha was dominant, charming, manipulative and egocentric. Dasha was submissive, quiet, kind and thoughtful. They clearly loved each other fiercely, but I was both distraught to see Dasha being sometimes physically and emotionally abused and baffled that it could be happening.

After all, they had identical genes and identical upbringings. Moreover, a Soviet scientific paper on them stated that they displayed different personality traits from birth, so they hadn't developed opposite personalities in a deliberate effort to differentiate themselves from each other. As one of their childhood doctors who knew them for many years said: "It was as if one had been brought up by a family of peasants and the other by professors."

I continued to see them almost every week, taking them out for picnics in the woods or back to my flat for home-cooked food and a hot bath. I felt a very close affinity with Dasha. Like me, she was accommodating but had always wanted a fulfilling job, a husband and children. Masha, on the other hand, was happy being a ward of the state and having Dasha by her side to do her bidding.

They earned pocket money for Masha's illicit smoking habit by putting rubber bulbs on pipettes and Masha would lie back reading magazines while Dasha did all the work. And Masha forced her reluctant sister, who had a gag reflex to alcohol, to drink vodka because they shared a blood system. Dasha understood early in life that the only way for them to live in peace was to acquiesce to Masha's needs. They received no therapy or psychological help, and I was unable to discuss anything with Dasha away from the unrelenting eyes and ears of her sister.

As a teenager, Dasha had fallen madly in love with a boy from school - a lifelong romance that consumed her but was not approved of by her asexual sister. Throughout her life, Dasha fantasised about the normal relationship she might have had with him to escape from her tedious reality.

I recall going in to see them one day in the late 1990s with a letter from a British surgeon who specialised in separating conjoined twins, offering to operate on them. Dasha glanced across at Masha, her eyes full of hope, but Masha, looking straight ahead, immediately said "nyet". And that, as Dasha would say, was that.

Ten years after I met them, I agreed to help write their autobiography. By dint of interviewing their doctors and ploughing through archives in the Lenin Library, I discovered that they had been subjected to what would now be considered medical torture for the first six years of their lives in the cause of furthering Soviet science.

They had been kept in a cot in a glass box next to a laboratory while scientists used them to determine the effect of the blood system (which they shared) and the nervous system (which they didn't) on the body's ability to regulate extreme temperature change, sleep deprivation and hunger. They were burnt, frozen, kept forcibly awake, starved, injected with radioactive and other harmful substances, and electrocuted to test their conditional reflexes. "They should all be lined up against a wall and shot like criminals!" raged Masha. Dasha, of course, was more forgiving: "They were just doing their job."

In the last few years of their lives, Dasha finally succeeded in asserting herself with Masha and I witnessed a remarkable sea change in their relationship. They settled, finally, into a comfortable existence of mutual well-being - Masha's simple enthusiasm for life and her wicked sense of humour acting as a natural balance to Dasha's bleaker outlook. After their death, three years later, I decided to write a novel closely based on their lives. I see it as an inspirational book, celebrating how the human spirit can overcome almost any hardship. But also a humorous one, full of their banter, love, joy and the many good times they had together, from getting a back scrub in my bath, to a fairy-tale trip to Cologne.

Dasha always dreamt of living in a world in which people with visible disabilities went as unnoticed as those without. I hope that in telling her story I can bring that tolerant society a little closer to reality.

The Less You Know the ­Sounder You Sleep by Juliet Butler (Fourth Estate, €14.99) is out now

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