8 Winters

The Star

NEWS

WEDNESDAY AUGUST 5 2009

13

Confronted with a cruel disease for which there is no known cure, quadriplegic Tony Katzew lets Alex Eliseev inside the stillness to reveal a man who is not waiting to die, but getting things done before he does

A

KEY turns. A small door opens. A memory breaks free from a virtual safetydeposit box inside Tony’s

his mind took him back to his pre-MND days. So often he had sent his family to the movies, unpacked the braai and lit a fire. He loved to cook the fleshy pieces of meat, listening to the sizzle and feasting on the smells. It was his time to be alone, lost in thought. Lying on his back in his room at the hospice, he so desperately wanted to braai. To get up, walk out into the sunshine and get his hands dirty with the black charcoal. But in almost five years he had managed to move only a finger and a toe. His helplessness sent him hurtling into despair. In the midst of his anger, he began talking to his disease. “The MND was saying to me: ‘I don’t have a head, or a tail. You can’t beat me. I’m going to destroy you. Give up, and I’ll take you peacefully’.” To give up would be to stop the lectures, the visits, the hobbies. To wait for death. Deep inside, he knew he could not surrender. But how desperately he wanted some peace. Eventually, the dark mist lifted. “I needed that anger, followed by vulnerability, to keep me on course.”

mind. It’s May 2002, the day he was diagnosed. He’s talking with his father Henry, a retired journalist and lover of poetic phrases. Henry says many things to his son that day, but five particular words crawl clear of the quicksand of time: “Every winter leaf must fall.” With these words begins the journey of a man who, statistically, should now be nothing more than a pile of bones resting in the earth. But Tony doesn’t do statistics. He doesn’t buy “it’s God’s will”, and finds “when it’s your time, it’s your time” too impractical. He says we know nothing about time. Tony’s travels have not been across borders and seas, but through years of searching for peace and purpose; of unwillingly extinguishing a love for his wife that began two decades earlier; of reaching out to his sons from a body frozen in quadriplegia; of fighting off thoughts of suicide; of releasing anger; of atonement; of finding spirituality and faith; and, most importantly, of never asking why.

Chapter 4: Falling silent

Chapter 1: Serial charmer I didn’t find Tony. Tony found me. From his bed at the tranquil Hospice in Houghton, he watched the world’s reaction to the chilling – and very public – suicide of American Professor Craig Ewert, a sufferer of one of the cruellest diseases known to man: motor neurone disease (MND). Ewert was in the final stages of the disease and could not face the terrible, and painful, end. Slowly, the disease – for which there is no cure – was shutting down his body by killing off his muscles. Like a computer closing programs, one by one, before switching off. “You can only watch so much of yourself drain away before you look at what is left and say ‘this is an empty shell’,” Ewert told the media. “Once I become completely paralysed, then I am nothing more than a living tomb… I have death, or suffering and death.” Tony, who also has MND, didn’t quite see it that way. And he wanted his voice to be heard. In midDecember, he asked his doctor to call me and invite me for an interview. His message was: suicide is not the only answer. I quickly discovered that Tony was a serial charmer. Every nurse and doctor who met him said he filled the hospice with a strange magic. He spewed out colourful stories, cracked dry jokes and, somehow, always kept busy. He was not waiting to die – he was getting things done before he did. For the past five years, Tony had been completely paralysed. The only movement MND allowed him was his face. Yet Tony lectured medical students, wrote his memoirs (titled: Happy Chappie), made an educational film about MND, headed a small in-house social club (“Le Club”), drank sundowners, entertained friends, read and watched sports. He was also in control of his treatment. Consultations with doctors were more like board meetings, of which he was the chairman. I was impressed and humbled by Tony’s spirit, but something else stirred me that day. We were perfect strangers and yet Tony’s tales were speckled with intimate truths. They were the kind of details – a troubled marriage, a rebellious son – seldom traded with outsiders. Tony hid nothing. When I returned three months later, I asked to be let inside his private world. When we adjourned the first day, we had barely covered his school years.

Chapter 2: Fallen on thorns Tony was born in 1946 and shares a birthday with the 14th, and current, Dalai Lama. He also shares the day with George W Bush and Sylvester Stallone – but who cares about them? “On July 6, Tony Katzew, the Dalai Lama and George Bush were born. In that order,” he chuckles. His family’s roots lie in Lithuania and he describes himself as “an Afrikaner boy who happened to be Jewish”. When he arrived at King David Linksfield, he had never before worn shoes to school and didn’t

PHILOSOPHICAL: Tony Katzew has suffered from motor neurone disease – one of the cruellest diseases known to man – for seven years. Unlike American Professor Craig Ewert, who recently committed suicide with assistance, Katzew is determined to live. PICTURE: BONGIWE MCHUNU own a pair of trousers. He hated King David, underachieved and, when he was 15, was told by his biology teacher he was the worst student she had ever encountered. After passing matric at a boarding school in Meyerton, south of Joburg, he sent a telegraph to inform her that her prediction of his failure was wrong. In his prime, Tony played rugby, hockey and tennis, and claims he could run the 100m in 10.4 seconds. Interested in economics, Tony went to college and studied to be a teacher. His path led him to the mining town of Welkom. When his English-speaking rugby team defeated one of the Afrikaans

AFRIKANER JEW: Tony Katzew’s family trace their roots to Lithuania. powerhouses, he celebrated a victory in the “cold war between me and the Broederbond”. His private battles against the Broederbond were filled with Woody Allen-style neurosis and, after being passed up for a big promotion, he drove to the office of a director of education and refused to leave until he was given an audience and a chance to air his allegations of anti-Semitism. He was convinced the Broederbond had infiltrated everything – especially the school system. It was in Welkom that he met his second wife, Celeste. His first marriage had been a bitter lesson in heartbreak. A pastor’s daughter, Celeste was teaching Afrikaans at the time and was very much not Jewish. “You don’t stop matters of the heart,” Tony explained. In 1983 – after just a few months of dating – Celeste made a surprise proposition. Standing between the frozen food section and the spice racks at Pick n Pay, she said “Marry me.” “When?” Tony replied. “Today’s Monday… How about Saturday?” “I’d better let my folks know.” The small private wedding took place on April 16 that year and, five years later, Tony and Celeste were a family of four.

In the years that followed, Tony tried his hand at banking (bringing his family back to Joburg), started a few businesses and eventually moved back into education. Teaching, he said, was in his blood. During the late 1990s, MND began announcing itself to him. At first it was patient, pushing him off his bike or tripping him up at home from time to time. In 2002 it stepped forward to claim responsibility and began working rapidly to break apart the mechanism that made Tony move. As his muscles began to wither and his legs grew weak, Tony battled to rise from the toilet seat. He went to the MND association and asked them for a special seat to make the toilet bowl higher. This bought him an extra six months of independence. After that, he went back, received another customised seat to fit onto the previous one, and held off the inevitable for another nine months. When he returned for a third extension, he was told there were no more seats and he would have to use a bedpan. Tony wasn’t ready. He asked a friend (a handyman) to custombuild one more extension for him, which he later gave to the association. “I was using a seat, on a seat, on a seat of the toilet seat,” he said. This was not an attempt to beat MND; he knew he couldn’t. His philosophy was to live alongside it for as long as he could. In the words of one of his favourite poets, Shelley, Tony understood he had fallen on life’s biggest thorns and bled. But he was determined to yank some of them out, limit the suffering and push on. On March 27, 2004 he took his last steps. It was also the first year a doctor predicted he would be dead by Christmas. Every winter leaf must fall.

Chapter 3: Lover to nurse Somewhere along the journey, a pastor told Tony his disease was God’s will. “That’s nonsense,” he replied. “The God I know would not will me to die. Maybe it’s part of some plan, but to say it’s God’s will is bunkum.” The pastor wasn’t thrilled. “It’s okay. He was an idiot,” said Tony of the pastor. Tony is no atheist. He doesn’t know who God is – Jesus, Buddha, Allah – but believes in Him and talks to Him daily. Sometimes he vents his anger. Sometimes he asks for strength. He doesn’t pray in a traditional way; he has conversations with God. He is also a spiritual man, who meditates with the help of a third cousin who is a “psycho-guru” in America.

Each week, Tony spends an hour on the phone with his guru Ken – a gay Jew who visits Hindu palaces to soak up wisdom. Ken also likes to march in Pride Parades with his dad and has adopted a Cambodian orphan. Despite being a busy psychologist, he guides Tony through his traumas. “He is teaching me spiritual exercises. The thinking, the breathing… He helps me untie the knots in my stomach.” Sometimes Tony closes his eyes and imagines he is inside his own body, sweeping up piles of junk with a broom. In the early years, Tony promised himself not to question why he was sick. It was a waste of time, because there was no answer. His elder son Rowan, upset at the news, spent two years in Europe after learning that his father would probably die within three years of being diagnosed. Very few sufferers make it past five years. After returning, he went to

puppet in the hands of those around him. She began kissing him on the cheek. Perhaps it was too painful. People close to Tony asked him whether she was not leaping off a sinking ship. About two years ago, she admitted she had had another relationship. Tony wonders whether there were not more. They spoke about divorce, Tony offering to sign the documents if she would pay the costs. She declined. During one conversation, she told him that she loved him as the father of their sons. “I care a lot for you,” she said. “But there are no romantic feelings anymore.” They argued over her stance that she had sacrificed so many years for him and about medical costs, which soared towards R30 000 a month. Some visits ended with Celeste storming out. Others were more

It took me a long time to realise that I’m still the adult… the father in the relationship study film in Cape Town. Thinking about his father dying “scared the hell out of him” and “he couldn’t bear to see me”. He slacked off in his martial arts, took up a job as a club bouncer and got caught up in fights. His younger son Gareth stayed and studied law. He didn’t make it, and changed over to information technology. For a while he dated an older woman, and Tony was worried about his son committing too much too soon. Time calmed the angst, and both Rowan and Gareth, he hopes, are now back on track. “They are starting to come to terms with it.” Tony, who also studied psychology, understands that his boys, in their early to mid-20s have busy lives. Work, gym, girls… whatever they do, he says, they have “mitigating circumstances” for not phoning him every day. “It took me a long time to realise that I’m still the adult… the father in the relationship. Even if I call them and they don’t call back, instead of getting angry I just call again,” he said. “They have a great respect for me. I think they’re great guys.” The distance between him and Celeste is far more painful. After the diagnosis, he said, their physical connection was severed. Celeste began to withdraw. She struggled to swop roles from lover to nurse, sometimes vomiting when she needed to clean up after Tony. She battled to be hands-on with a man who was becoming a wooden

peaceful, with the pair sharing a bottle of wine. It took a long time for Tony to force himself to fall out of love. “I had to wean myself off her emotionally and romantically,” he explained. “I don’t love her in the conventional way a husband loves a wife, but I care very much for her.” The process didn’t come easily, and Tony sought Ken’s help. He worked to change gears and see their relationship differently.

“We’ve now established an understanding and a better relationship. We are friends. Not the greatest of friends, but we’ve been worse friends.” An important part of Tony’s journey was to understand what he could and could not do. Learning his limitations, and refusing to give up some basic pleasures, was key to living inside the stillness. He asked a friend to put up a flipchart and write down all the things he liked doing, and how he could continue doing them. He loved to read newspapers, have sundowners and chat to his family. He could still do those. Washing his car would be trickier. So he decided he could still be present when his car was washed. Some things, like visiting Lithuania, he will never do. He has accepted that. Early on, he thought about suicide. Most, if not all, MND sufferers do. He vowed that the day he became “a vegetable” or had to wear adult nappies, he would end it all. “It’s not going to happen,” he told himself then. “But time mellowed me. I present you with the evidence in nappies,” he says now. “My thoughts of suicide were nonsense. It would be the most selfish act of my life. What an injustice I would be doing to my family.” Tony is considered emotionally stable. Yet the depression lurks. A few months ago he locked swords with some of the darkest demons he has faced. The depression lasted two days and was sparked by nothing more than a desire to braai. He woke up in the morning and

GAME FOR ANYTHING: Tony Katzew was a keen sportsman in his earlier years, playing rugby, tennis and hockey. Struck down by motor neurone disease, he has become more internally oriented, and often meditates with a ‘psycho guru’. PICTURES: HAPPY CHAPPIE, AN AUTOBIOGRAPHY

Is he frightened of death? “The more you are able to talk about death, the easier the fear becomes to handle. I don’t think about it much. But I do think I am ready for it.” Tony knows the disease, he knows how it will end and he has spoken to several people just before they died. “Do I fear it? Not now. I don’t know how I’ll feel later, but fear doesn’t seem to play a very big part in the dying process.” When he is at death’s door, however, the doctors have been asked to fill his drip with his favourite white wine. A final, and crucial, part of his preparation was to make peace with his past. As his body grew weaker, his mind and memory grew sharper. He travelled back in time, to watch himself burying a green bar of soap he had stolen from a shop. Somewhere in his subconscious, he felt guilt about the petty crime. “Sorry about that one,” he told himself, and moved on. In his travels he encountered people he had hurt or disappointed. He made peace with them. In one case, he actually phoned an old army subordinate on whom he had been particularly tough. “You were worse than Hitler,” the man told him. Which, to a Jewish bombardier, was quite something. Tony apologised and was, of course, forgiven. Now Tony lives in a world of virtual “safety-deposit boxes”. His mind is full of them, and he has learnt to open and shut them as he pleases. “When all you can do is use your brain, you learn one art. You have to compartmentalise your thoughts, or your mind will be full of thoughts 24 hours a day.” Tony has many compartments: death; his son in Cape Town; lectures; happy memories; problems… “If I want to laugh, or analyse fear, I just open up the right one.” When he doesn’t want to think about dying, he locks the thoughts away. At night, when he is about to take his sleeping pills and go to sleep, he closes all the compartments. Tony’s voice is starting to strain. It’s becoming rough, slowing down his speech and forcing him to stumble over long words. One of his vocal cords has been half killed by MND and he is preparing to learn how to use a mouth-operated computer to communicate. The idea of falling silent terrifies Tony. But it’s part of the journey. Eventually his lungs will collapse and his body will switch off. Every winter leaf… When he dies, he hopes to find the answer to why the disease chose him. But before that, his eighth winter awaits. “Only when you drink from the river of silence shall you indeed sing. And when you have reached the mountain top, then you shall begin to climb. And when the earth shall claim your limbs, then shall you truly dance.” – Kahlil Gibran