The Guardian – Our beautiful sons could die before us

The Guardian, 16 August 2014 – Our beautiful sons could die before us: Nick Taussig thought his son Theo was a bit of a late developer. If only that were true. Doctors diagnosed Duchenne, a devastating genetic disorder – and everything changed. He will not rest until he finds a cure.

We judged it to be little more than a routine appointment with the pediatrician, and so only I had gone, not my wife Klara. Both of us did not need to be there. Would she not confirm what we suspected? That our soon-to-be three-year-old son, Theo, was just like me, no more than a late starter. My mother had reassured me – as only mothers can – that I had been the very same. I did not crawl, just walked, and this I did about a year too late. And my speech, well, that was late also. I had said nothing until I was two and a half.

Theo was his father’s son, therefore, developing in his own inimitable way, and the pre-school manager was simply being neurotic and overzealous in her concern for Theo’s development – his failure to hit certain key milestones. His nursery was not worried in the slightest. An occupational therapist, a physiotherapist and a speech therapist had assessed him, and they had raised no major concerns. And so was this not just final confirmation that Theo was fine, albeit a little slow in getting his act together?

The pediatrician took to him immediately, Theo charming her with his big blue eyes and shy smile, behind which lurks a great confidence, as if he already knows he’s in possession of good looks, which will serve him well as a teenager and young man. She took out some toys. He did as he always did and flopped clumsily on the floor, almost in the manner of a rag doll, legs splayed either side, and began to play. She asked me about him, the usual questions. When did he sit up on his own, crawl, walk, talk, blah-blah-blah? I answered as best I could, unsure of exact dates, though my answers were not important because, well, he was his father’s son.

He sat for quite a while and played. “I think he’s an intellectual,” the pediatrician said warmly, then asked him to get up, and he did as he always did and heaved himself to his feet, using his hands to help him stand, looking as if he was climbing up his legs. She then said she wanted to see him walk, and we left her consulting room. Theo, excited by the change of scene, did as he always did and waddled fast down the corridor, his idiosyncratic gait – hips swinging camply from side-to-side – a perfect metaphor for his development: he did things his way. And lastly, she wanted to see him walk up some stairs, which he likewise struggled with, taking one tentative step at a time whilst clutching at the wall in the absence of a rail, until after a few steps he gave up, crawled up a few more, then insisted that daddy carry him the rest of the way.

We returned to her consulting room, where she explained she would like to take a blood test, which I judged to be no more than precautionary. We arranged it for the next morning. And that was that.

She called the following afternoon, the results already through, asking to see us tomorrow, and this time could we both attend please, mum and dad. “Is there something wrong, do you think?” Klara asked. “No, not all. I think she’s just being very efficient,” I replied.

We walked into the hospital again on the morning of Thursday 26 June. This is just six weeks ago, I realise as I write this, and yet it feels like an eternity. Why does time have the habit of slowing down quite so much when we are in pain? I still cannot remember exactly what she, the pediatrician, said, though she spoke with great tenderness, her voice quivering, on the verge of tears. “He has very high levels of creatine kinase…this points to muscular dystrophy…and by virtue of his age and sex, it’s statistically most likely he has Duchenne.” I could not bear to hear this last word, which possessed an appalling finality, but even worse, I could not bear to see my precious wife floundering with the diagnosis, because she did not yet know what I knew, what this word meant.

I knew because a year before I had approached Alex Smith of Harrison’s Fund further to reading a newspaper article entitled, “I Wish My Son Had Cancer,” Alex alluding to the fact that cancer research is far better funded and resourced than muscular dystrophy. I was interested in making a documentary film about his extraordinary attempt to complete an Ironman Triathlon – a 3.8km swim, a 180km bike ride and a 42.2km marathon – carrying his 35kg disabled son, Harrison, the whole way. To this end, I’d even written a pitch for broadcast, describing how Alex had first learned of his son’s fate, the doctor explaining that, “Harrison cannot produce dystrophin, a protein we all need to build up and protect our muscles. As a result, every muscle in his body is deteriorating. He will most likely be in a wheelchair by twelve, will suffer from respiratory failure, heart failure and other debilitating orthopaedic complications, and will die in his late teens or early twenties.” Was there any hope? Alex had asked. “No, the disease is 100% fatal,” the doctor had replied. This was now my son’s fate as well.

I began to cry, then found I could not stop. I was barely able to speak. The appointment ended with the recommendation that Oskar, our eight-month-old son, be tested also. Klara thanked the pediatrician, and the four of us left. I held Oskar, while Theo took mummy’s hand. We walked aimlessly through the maze of corridors, until Klara eventually suggested we go to the canteen and eat something: the boys needed their lunch.

I ordered some food, for Klara and I too, though well aware that neither of us would eat. How could we? Klara uttered the word, at which point I told her what I knew of Duchenne. She started to weep, in this dour canteen, as a group of student doctors looked over at us, likely wondering what diagnosis we had just received. Theo responded by smiling at his mother in between a large mouthful of mozzarella and tomato panini, as if reassuring her that, in spite of the fatal genetic illness he had just been diagnosed with that would kill him before he was a man, all would be okay. And I could not bear this smile, because at that moment all could never be okay, as our son, our beautiful son, was going to die before us.

We have to call family and friends, Klara and I realised when we got home, and this was exhausting, as they all responded so differently, some crying while others held it together, doing their best to be strong and supportive. We got to the point where we were tired of having the same conversation over and over. “What’s the treatment?” There is no treatment. “But what about steroids?” They do little more than postpone the inevitable by a few years. “Might there be a scientific breakthrough?” Possibly, though we cannot count on this. “How are you?” We’re ok, when what we really wanted to say was we’re drowning. “You’re so brave.” Thank you, when what we really wanted to say was what fucking choice do we have, should we just give up now?!

The next few days and weeks, Klara and I entered our own private hell, the shock of the news quickly replaced by a desperate grief – it was as if our son had already died – and in my case, a malignant sadness, which gnawed at my heart like a cancer. I was unable to sleep, to think, and struggled to even look at Theo, as whenever I did, all I saw was his cruel and painful decline, his muscles wasting away before my eyes. He would never play rugby, never make love, never make it to university, never realise his full potential. One morning, after just a few hours sleep, I went for a run. I pushed myself until I could not take another stride, then sat down on a bench and wept, praying that Theo live a full life and I die.

Oskar was diagnosed with Duchenne as well. Klara was distraught when I called from work and told her. Her parting words to me were, “We must be incompatible.” I did not tell her that she is the carrier of the defective gene, X-linked inheritance a defining characteristic of Duchenne. I hurried home as fast as I could, desperately worried for her. I felt like I inhabited a nightmare as I stood there, on a packed platform, listening to the loud and continuous laughter of a group of businessmen beside me. Lost in a haze of grief, I got on the wrong train. When I did finally get home, I found Klara with my parents. She looked fragile, unlike her, as she is always so very strong. “It’s me, isn’t it, I’ve given it to them…” she uttered, and all I could do was hold her and kiss her and tell her I loved her.

The following week, the love and support of family, friends and colleagues proved vital, sustaining Klara and I when all felt lost. We found ourselves fluctuating wildly between hope and despair, one minute sure that a cure would be found in time, further to reading yet another article online, the next convinced that one would not, with us doing little more than deluding ourselves. It took my sister to remind me that, “Right now, the boys are very happy, and will continue to be, as long as you give them all your love and care.” And she was right.

I will cherish them to the very end, but also will not rest until a treatment and/or cure is found, of which there is the real prospect of one now. There are 2,500 British children with Duchenne and 300,000 worldwide. Ninety nine per cent of sufferers are male. It is a cruel and horrible disease, and the most common fatal genetic disorder to affect children around the world.

Last weekend, we were in a children’s playground. Klara was helping Theo navigate a few of the different climbing frames. A father behind them escorted his two daughters, Theo’s age or thereabouts, and became increasingly impatient. Why is this boy so slow? Why is his mother so protective of him? he wondered, then huffed and sighed. I wanted to rip his head off. How dare he dismiss my son in this way! Does he not realise that this woman, my beautiful wife, is not cosseting her child, but rather aiding him, because his hips and shoulders are too weak? My son has a disease, is disabled, and this prick doesn’t realise it. Well, I will make him realise, I thought, as I prepared to confront him. I looked at Theo again and he was smiling, enjoying the challenge of the last obstacle, and I looked at Klara, who was so present with him and always has been. Christ Nick! I rebuked myself, and walked away.

In that moment, I understood that I have cherished and loved Theo and Oskar more this past month than ever before. Their diagnosis, in this respect, has been a perverse blessing, forcing me out of my stupor and delusion, and urging me to really be with them as opposed to being too often preoccupied with work and worry. Klara knew from the moment they were born that we were blessed and privileged to have them, and has never lost sight of this. But I did lose sight, on occasion. I took them, my beautiful boys, for granted.

A wonderful man, a friend of my sister’s, said to me a few weeks ago, “Certain children choose their parents, and Theo and Oskar have chosen you and Klara, as you possess the qualities and strength they need.” Before I was told my sons were dying, I would have dismissed these words as no more than sentimental claptrap, but now, I hold them close to my heart.

If you would like to help fund the world’s best researchers and scientists find a cure, please donate to Harrison’s Fund: harrisonsfund.com

Nick Taussig is running a marathon on 21 September for Harrison’s Fund. If you would like to make a donation, visit justgiving.com/NTaussig

theguardian.com/lifeandstyle/2014/aug/16/our-beautiful-sons-could-die-before-us

 

The Big Issue – Nick Taussig, Five Crime Novels Everyone Should Read Before They Die

“A dazzling study of mental anguish and moral dilemma” Author Nick Taussig picks his essential crime fiction reads… The Big Issue, 7 August 2013

 

1. Crime and Punishment, Fyodor Dostoyevsky
Following the nihilistic student Raskolnikov, this is a dazzling study of mental anguish and moral dilemma.
2. The Godfather, Mario Puzo
We’ve all seen the trilogy of films but read the original novel, stunning in its detail of the inner workings of the Cosa Nostra.
3. Papillon, Henri Charrière
First published as a memoir – the tale of a French criminal escaping from countless penal colonies – it later transpired the author was prone to fantasy and that the book was a novel after all. But what a creation.
4. The Spy Who Came In From The Cold, John le Carré
The master espionage writer’s third novel was brilliant, not least because you feel the writer in every sinew of his hero, Leamas.
5. The Big Sleep, Raymond Chandler
Revel in the plot’s complexity and how Chandler leads you one way then the other. Yes, the double-cross extends to the reader also.
Nick Taussig’s latest novel, The Distinguished Assassin, is out now in hardback (Dissident, £12.99)

Independent – Five-minute memoir: Nick Taussig recalls a particularly trying trip across Russia

‘Mother Russia’ had long intrigued the author, but a journey across the country almost changed his mind… The Independent, 3 August 2013

A lifelong student of Russian literature – no one wrestles with the shadow self quite like a Russian novelist – it was perhaps inevitable that I would write a novel profoundly Russian in character, and that in order to write it I’d first have to travel Mother Russia’s length and breadth, from Moscow to Magadan.

This preoccupation, with the likes of Dostoevsky, Tolstoy and Solzhenitsyn, was likely inspired first, by my Slav background – my grandparents Central European Jewish émigrés – and second, by my Czech wife, who like so many had the great privilege of living under Soviet Communism, this quintessentially Russian creation.

For only the Russians were willing to submit themselves, for quite so long, to such a contemptible system, to live according to a single prescribed ideology, which claimed to offer a lifetime of perfect Communist harmony but actually provided the very opposite, a lifetime of hardship, frustration and dread. Why was this? The answer surely lay in a Russian pilgrimage, I concluded.

Moscow I could handle on my own, I thought, though for the rest of the journey, to Siberia and beyond, I’d need a fellow pilgrim, and crucially one who spoke more Russian than I did. I was very fortunate here. My father, a passionate historian, linguist and former director of foreign language services for BBC World Service, agreed to accompany me, and what proved most valuable, when the odyssey got difficult, which it did, was less his above credentials and more the man himself – his great, indefatigable, big-hearted, fiercely intelligent and slightly mad (but in the best possible way) spirit. Without him, Mother Russia would have got the better of me.

Things got tricky in Moscow after just three days, when I was suddenly, and rather unceremoniously, accosted by two men while taking pictures of the Lubyanka, the former headquarters of the KGB. Dressed in dark suits, the two men, whom it transpired were FSB (Federal Security Service) agents, had bounded towards me, and before I quite knew what was happening, took me by either arm, and without saying a word, marched me through an underpass. They held me outside a side entrance to the main building of the FSB, while a third man, having confiscated my passport, ran checks on me inside, sure that I was a British spy. The two agents, big, bolshy Slavs, said nothing, simply stood guard over me like two great Russian oaks. Only after 40 minutes, when their colleague returned, did they release me, having deleted every photo I’d taken, their parting words, “Fuck off!”, spoken in perfect English.

What I immediately gleaned from this experience is that the country remains insular, suspicious and authoritarian, having placed far too much power in the hands of its security services. Perhaps the Russian people are predisposed to live under strong authority, I wondered, and thus accept the terrible abuses of Putin’s authoritarianism, just as they did Soviet Communism.

The flight from Moscow to Magadan, some 5,500km east, was nine hours, yet this did not include the stopover in Bratsk, where we were herded like cattle into a dingy brown Soviet-era waiting room and instructed to wait, for how long it was unclear. After three hours, my father had the gall to ask an airline attendant, “When might we be on our way again, do you suppose?”. His question met with the curt, officious answer, “Soon!”. No more was offered. In Russia, the customer is not always right. We finally boarded again, and when we arrived in Magadan were exhausted, this compounded by the fact that we had flown across eight time zones but were still in the same country.

We had not booked a place to stay in advance – my failing – and so trawled Magadan’s few hotels in search of a spare room. None could accommodate us, but for the last. We were taken to our rooms – designated for non-Russians. My father smiled wryly, as both of us shuffled wearily into our respective abodes. He clearly foresaw what was in store, and well, we were not to be disappointed. The wallpaper was peeling, the plaster cracked, the furniture dilapidated, the bathtub Stalin-era – little more than a urinal – the room fit for a fugitive and no more. It was, like the airline attendant, Bratsk Airport, the two FSB agents and Moscow itself, grim, colourless and indifferent. I sat down on the poorly sprung bed, then heard my father howl with laughter. “The pilgrimage is complete. What better view of the troubled Russian soul than this, comrade. How they’ve made us suffer!”

Nick Taussig’s latest novel, ‘The Distinguished Assassin’, is out now

independent.co.uk/arts-entertainment/books/features/fiveminute-memoir-nick-taussig

Marcel Berlins reviews The Distinguished Assassin in The Times

The Distinguished Assassin is Professor Aleksei Klebnikov, banished to a Gulag labour camp in 1949 on trumped-up charges. Set free in 1952, he becomes a hitman for a gangster, assigned to murder six brutal, highly placed Communist officials. Klebnikov’s ultimate aim is to kill the man responsible for his captivity and who, he believes, seduced his wife in his absence. The story is told in alternate chapters covering his time as prisoner and after his release. Through Klebnikov, the plight of the Russian people under Stalinist rule is grippingly demonstrated. Taussig’s style – short on dialogue and long on descriptions and Klebnikov’s thoughts –takes a bit of getting used to, but turns out to be effective for the passionate political and emotional content of his novel.”
Marcel BerlinsThe Times

The Times – 8th June 2013

The Brothers Karamazov by Fyodor Dostoevskii

Man is a wolf to man, according to The Grand Inquisitor in Dostoevskii’s The Brothers Karamazov. He has no inclination to be good, but is weak and rebellious. He cannot escape from the compulsion of logic. He is doomed to self-destruct through the assertion of his will. His quest for harmony is futile, unless he submits to a strictly ordered paradise on earth. The necessary forces of “miracle, mystery and authority” must be enforced in this “spiritual kingdom,” in the words of The Grand Inquisitor. Man does not want his freedom. He must be made good.

Zosima, however, believes the opposite. He trusts in the potential of man, who does not have to live according to logic, according to principles that deny him any choice or freedom. Nor does he have to be destroyed by freedom, allowing it to become an all-devouring passion. Rather, he must nurture the good and the beautiful that exists within him. The hope for man consists in his capacity to love, to engage in active love. And through this love, the heart and the mind can live together harmoniously.

Dostoevskii saw his final novel, The Brothers Karamazov, as a response to The Grand Inquisitor’s negation of God, his answer lying in man living like Zosima, according to Christian Orthodoxy. The book, therefore, is the author’s hope for, and commitment to, humanity: his belief in the good and beauty that he was sure not only existed within man but would lead to his salvation. And though I do not agree with Dostoevskii’s conclusion – that the answer to man’s suffering lies in the Christian faith – it is nevertheless my book of a lifetime due to the sheer scope, rigour and passion of the author’s endeavour.

The Karamazov nature – sensual and innocent, emotional and intellectual, loving and contemptible – is representative of the contradictory nature of the Russian man, the three brothers coming to symbolize these different natures, which wrestle with one another for dominance throughout the novel’s course. Through their suffering, the brothers all seek harmony, which consists in their various attempts to reconcile these conflicting personalities, though none of them will attain this harmony unless they live with Christ in their hearts.

Dostoevskii does not believe that the ideal of Christ can be fully realized in any of them, this an impossible ideal, contradicting man’s essential nature, in a state of struggle and imperfection on earth. Human life consists in the struggle of good and evil, and this conflict is essential not just incidental. But through this struggle, it is possible for man to gain redemption on earth, which one of the brothers, Aliosha, does finally gain. Another brother’s life, Ivan’s, conversely ends in suicide.

Ivan lives his life according to logic and reason alone, unable to incorporate Christ into his soul, and though I do not believe the absence of Christ leads to his ultimate demise, the absence of love surely does. Ivan sees the suffering of innocent children as too high a price to pay for the attainment of any higher ideal. In his words, “They say without it [suffering] man could not live on this earth, for he would not understand the difference between good and evil. Why should one understand that damned difference… if that’s the price to be paid? All the knowledge in the world is not worth the child’s tearful prayers to Dear Father God.” Ivan, convinced of the power and cogency of his argument, lives by reason alone, denying any love in his heart. Zosima, on the other hand, believes that, “There is no sin in the whole world that God would not forgive the truly penitent. It is altogether beyond any man to commit such a sin as would exceed God’s infinite love… If you repent, you must love. And if you love, you are of God… Love gains everything, redeems everything.”

Though I find it hard to accept Zosima’s claim, that all can be forgiven and find redemption, by the end of the novel I realize I would rather live with hope in my heart than despair, with feeling rather than logic, with love rather than hate. The wonder and importance of Dostoevskii’s The Brothers Karamazov lies here, in its capacity to inspire faith in those who live by reason alone, to turn cold hearts warm.

Putin, a modern day Stalin

Masha Gessen, the Russian journalist, wrote a very important book last year, published by Granta in the UK. The Man Without a Face is a devastating portrait of Vladimir Vladimirovich Putin, a man who, when he took power of Russia in 2000, swiftly dismantled the young mechanisms of democracy put in place by his drunken predecessor Yeltsin and ruthlessly silenced all critics, be this through repressive legislation, forced exile or murder. The former KGB man was not interested, despite the vein hopes of the West, in being a new Russian leader, open and democratic, instead wanted to rule his country with total control, of the authoritarian not the totalitarian kind. To this extent he aspired less to a Soviet hero such as Brezhnev, and more to one such as Stalin.

The democracy of twenty-first century Russia is, in truth, nothing more than a façade, an illusion, just as the utopia of Stalin’s Russia was, where all Russians, rather than living and working in perfect Communist harmony, lived in abject poverty and dread. Putin, like his great ancestor Stalin, has little concern for the will of people – what they want and need. Rather he cares only for himself and the power of the state he wields total control over, which he will serve, as he did the Soviet state, until the bitter end. Communism collapsed because the people had had enough of this state, which was utterly indifferent to them, hindering them and diminishing their happiness when it had claimed to be doing quite the opposite. Yet Putin’s state, this new state he moulded out of the debris of the old Communist one, is the very same.

Vladimir Vladimirovich, a moody bugger like his monstrous precursor Stalin, expects gratitude from his people for his dedication, his loyalty to Russia and her people. His surly face, like Joseph Vissarionovich’s, conveys a man who should be leader because he knows best, what’s best for the Russian people, and that, despite the great demands of the job, he is making this enormous sacrifice for his people, a sacrifice which includes accumulating vast personal wealth. Stalin might have had a propensity for criminality, which included raising money for the Bolsheviks through bank robbery, kidnap and extortion, but Putin has proved himself a master of it, the boss of bosses, according to Gessen. “Like all mafia bosses, he [has] amassed wealth by outright robberies, as with Yukos, by collecting so-called dues and by placing his cronies wherever there was money or assets to be siphoned off. By the end of 2007, at least one Russian political expert estimated Putin’s personal net worth at $40 billion.” Putin might have labelled certain oligarchs thieves, yet he is perhaps the greatest thief of all. He robs the Russian people not only of their wealth but also their freedom.

But the greatest likeness between the two lies in the image both men cultivated of themselves, which was, and is, so at odds with the truth. There is a cult of personality around Putin too, who, like Stalin, has cast himself in an heroic light – as a benevolent father, brave warrior, wise leader and compassionate man. What one should see, however, is the very opposite – a cruel, cowardly, vain and ruthless one obsessed with personal gain and no more.

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