Sisters have made all the difference in a village walled off from the outside world for decades by bricks – and fear.
By Mark Reidy
As I sit in the main street of a leprosy village in the Shaanxi Province of central China, a brightly-dressed young girl skips merrily out from between the colourless, communist-inspired accommodation blocks, hands me a stem of fresh flowering blossom and then, just as quickly, disappears into the shadows.
It is almost a surreal moment, but one that is symbolic of the transformation that is taking place at the Han Zhong leprosarium, a village walled off by authorities form the outside world decades ago.
Eight-year-old Ta Yo Har, represents a new springtime for the 273 leprosy sufferers who are slowly emerging from a winter that has imprisoned them for nearly six decades. Ta Yo lives with relatives and attends school in a distant village but returns regularly to Han Zhong to stay with her leprosy affected parents for the weekend.
While the family must still surround Ta Yo with a cloak of secrecy so that she will not be ostracised by her association with the disease, she is at least able to spend time with her parents, a luxury that has not been afforded to the generations before her.
It is a life-giving season that began when Sisters from the Franciscan Missionaries of Mary arrived in 2003 at the invitation of Spanish Jesuit, Fr Luis Ruiz.
There are currently six sisters, all Chinese born, who dedicate their lives to providing the love and care that has eluded these forgotten people for so long.
Meanwhile, one resident, Jou Hu An, is 85 and has been afflicted with leprosy for almost 50 years. He recalls the fear he experienced when he was transported to Han Zhong when no one else in his family was willing or able to care for him.
Isolated from society and thrust amongst 3000 fellow sufferers, he had little idea that this would become the place in which he would spend the remainder of his life. These were decades of suffering and hardship that were driven as much by a lack of medical knowledge as by an ignorance and misunderstanding of the disease.
But today he says that the horrors of the past, of patients not washing or changing clothes for years at a time, of living with the stench of rotting flesh and the trauma of emotional and physical isolation from the outside world, have become a distant memory.
Since the involvement of Casa Ricci, which includes the introduction of Sr Ma Ching Ling and the five Sisters in her charge, Jou Hu says that the lives of the patients have been dramatically transformed.
Bandages that had in the past been recycled, often reinfecting wounds, can now be discarded and replaced with fresh ones and newly constructed buildings have provided suitable toilet and washing facilities.
But more important, he emphasised, has been the physical and emotional bridge that the Sisters have helped create. Their practical love, the washing of bodies and clothes, the cooking for those physically incapable and the treatment of once-neglected wounds, is gradually restoring dignity and fulfilling the need for love that had been missing during the long years of abandonment and neglect.
But there are still many areas of need. The Sisters begin each day with prayer at 6am before attending to the sores and ulcerated wounds in a bare and primitive dispensary. So small is the concrete room that, weather permitting, the Sisters more often minister outdoors to those who require attention.
When they first arrived at Han Zhong, Sr Ma said that over half of the village’s residents were afflicted with wounds that needed medical intervention.
In the past, government officials had provided basic medication, but fear ensured that physical attention was virtually non-existent and patients often had to attend to their own wounds – a difficult task for many whose fingers, hands and eyes had been distorted or destroyed as a result of their disease.
Due to the nature of leprosy (the protective sheath covering the nerves is damaged and patients have no sense of pain in the affected areas) there is a need for constant surveillance of all body parts to ensure that any cuts or scratches are detected and treated early.
Untreated wounds lead to the deterioration of extremities such as fingers, toes, eyes and ears and this can lead to disfigured features and missing digits and limbs.
The arrival of the Sisters has led to the healing of most of these wounds. However the severity of neglect from the past and the vulnerability to new wounds ensures that there will always be a daily need for care and vigilance. The Sisters have also been able to focus on those most in need, ensuring that they are adequately clothed, fed and cleaned, and allowing the more able-bodied patients, who had cared for their fellow sufferers in the past, to focus on their own needs.
Jou Hu says that he praises God for sending the Sisters. Their presence, he believes, has ensured that once-fearful locals, who in the past took great measures to avoid any contact or association with those living in the walled village, are now becoming more open to interaction.
Canola oil, which is grown and produced within the Han Zhong leprosarium, is now being traded to locals and a small but increasing number of young men have also been employed for work outside.
It seems that the witness of Sr Ma and her dedicated team is slowly eroding the wall of fear and ignorance that has shrouded leprosy. Their love has formed a bridge to the outside world. But for the thousands of other sufferers across China, there is still a long way to go.
Dignity is priceless
Love can make loneliness turn into peace
By Robert Hiini
From out of the darkness shone two high beams of light as a large truck loaded with building materials and it was coming straight at us.
Sr Ma Qing, our driver and provincial leader of the Sisters at the Honjiang Leprosy Communtiy we had come to visit, was overtaking the car in front and she would not be beaten.
We careered closer and closer, my colleague in the back of the van and I, increasingly anxious, in the front.
Convinced we were about to die – an entirely unsatisfactory way to end an investigatory trip we had only just begun – I let out a small yelp just before Sr Ma pulled into our lane, metres away from the truck that was faithfully forging ahead.
Ignorant of the complex myriad of horn and highbeam signals Sr Ma had used and their significance to driving in China, I was at that stage unaware of the passage Sr Ma had negotiated for our van as the truck approached.
Having noticed my pathetic and evidently unnecessary attempt to draw attention to the truck steamrolling towards us, Sr Ma asked our travelling companion and translator, Luis Pan, to tell me the year in which she passed her licence and how long she had been driving.
Not the way to hit it off with one’s host but after our two weeks were up, it serves to illustrate how surreal the Sisters’ experience of normal life would be to us.
The next day, I was sitting in a rundown courtyard next to a leper, taking photographs of the centre’s five Sisters and the patients whose wounds they were dressing.
The man I sat next to was Lui Chei Chang. He is 71 years old and has been here since 1959.
The label "leper" is incorrect; he hasn’t had active leprosy for decades. But his face gives a vivid account of the difficulty and struggle of those years.
He contracted leprosy while living in his family home when he was 20.
The family tried unsuccessfully to hide the fact from surrounding villagers for three years – a common practice driven by the fear and stigma that could engulf entire families – before finally being committed to the isolated Han Zhong leper colony, in the rural outskirts of Hunan Province.
His parents have never been back although one of his grandfathers has visited twice during his 50-year stay.
After an hour or so, Mr Lui showed me around his room and gave me an apple to eat, clearly excited at the prospect of being able to share his home and his story with the wider world.
For many years he felt dejected and profoundly hurt at being left at Han Zhong, as well as desperate at the thought of never being able to go outside of the leprosarium’s walls.
But, he says, his anxieties have been calmed by the community that has developed at Han Zhong. "Basically, we have a good community here," he says. "All of us are concerned for one another."
Three years ago, he became a Catholic, citing the caring work of the Sisters who have been living at the community since 2003 by the arrangement and support of Casa Ricci Social Services.
As a proud and dignified man, it was hard for him to be so dependent on them when they first arrived, owing to cataracts in his remaining eye (he lost the first to leprosy decades ago.)
An operation in 2006 gave him the ability to see clearly again and he has felt an upsurge of joy at not being a "burden" to others, a concern expressed by most of the community members to whom we spoke.
He remembers shouting "praise the Lord" at the top of his voice when the bandages were being removed and thanking the doctor and nurses emphatically.
Like any elderly gentleman anywhere in the world, he says that he enjoys the renewed independence the operation has given him, being able to cook and clean for himself – an indication that no matter how "other" I expected a leprosarium to be, it is remarkable how "everyday" Mr Lui’s feelings and sentiments were.
In his spare time, he enjoys reading and watching television with his friends.
When asked whether he ever gets depressed at seeing the world outside on TV, a world he is prevented from being a part of, he says he doesn’t mind so much anymore. "I know it is likely that I will die here but that’s ok. We just like to see what’s going on outside."
We left Han Zhong leprosarium five days later but I don’t think meeting Lui Chei Chang will ever leave me.
Where I expected to find people with an understandable sense of injustice, indignation and suspicion I found instead a charming and upbeat old battler, ushering me into his house, insisting that I try one of his apples.
Surreal indeed.
Touch restores sense of humanity
It’s the simple things that make people feel human again.
By Mark Reidy
Despite her lack of knowledge regarding leprosy, Sister Ma Ching Ling did not hesitate to respond to her Provincial’s request to lead a team of Sisters in living within the walls of a leprosarium in the remote corner of the Shaanxi Province.
She believed it to be an honour to follow in the footsteps of Christ who had also reached out to those who had been ostracised to the fringes of society.
Sr Ma, 43, was born in the central Chinese city of Xian and had felt called to a consecrated life during her final years at high school.
She was drawn to the spirituality of the Franciscan Missionaries of Mary, a French Order that had arrived in China in 1899, and entered their convent in 1991 at the age of 25.
The Chinese branch of this Order was literally founded on the blood of martyrs as the seven Sisters who arrived in China in 1899 were murdered during the Boxer Rebellion of 1900 and were canonised by Pope John Paul II in October 2000. Sr Ma’s already strong faith was consolidated during her time of formation and she believes that this gave her the courage to unite her life with the people living within the Han Zhong leprosarium, many of whom had been there since the 1950s.
Sr Ma was, however, shocked at the appalling living conditions that confronted her when she first arrived.
She immediately set out, along with the other sisters who later joined her, to rectify the medical, emotional and social neglect that was prevalent.
She recalls the words of an 80 year-old-man who, after being washed by the Sisters, said that he had never felt so clean and comfortable in his whole life.
She remembers the horrific sores that afflicted more that half of the 280 inhabitants, many of whom were incapable of independently washing, cleaning, feeding, dressing wounds and toileting.
She recalls the psychological and emotional pain carried by those who had been separated from their families for so long, especially mothers who rarely, if ever, were able to see their children.
It was a place of sadness and suffering, she says. But she is excited by the transformation that has taken place over the past six years. Local farmers, who once kept their distance are beginning to trade with those in the village; washing and toileting facilities have improved and ulcerated wounds are being treated before any further permanent damage can take place.
According to all the patients that were spoken to, one of the greatest healings that the Sisters brought with them was the willingness to hold, touch and talk to them, which, after decades of neglect, reminded them once again that they were human.
It was this love, gentleness and nurturing that gave them life as much as the practicalities of washing, cooking and nursing, they said.
But Sr Ma will not become complacent in her drive to improve the lives of these once-forgotten people, as she knows that their needs are constant.
Each day – which begins with singing and praying in the early hours and often finishes with the laughter shared by this joyous community of sisters – is filled with Christ-inspired spirituality and works.
United with their martyred predecessors, these Sisters of Han Zhong will continue to live out the Gospel message and inspire others by the sacrifices that they are making with their own lives.
Sisters make the difference
Despite the pain, community life prospers
By Robert Hiini
Initially, his face is sombre when I ask one of the men hovering around a TV if he is pained when he sees images of the outside – not just the usual glamour and unreality of Chinese soaps and celebrities, but of happy families, big cities, desirable destinations and projected possibilities.
“No, not anymore,” he remarks, his face returning to contented resignation.
“We know it’s unlikely we’ll ever get out of here. We know we will probably die here and that’s alright.”
The lepers at Hon Zhang aren’t in search of a community. They already have one.
We spoke to the leprosarium’s manager to ask him how the community was travelling.
Xiang Lee is a manager who has “been there.”
The 63 year old father of one came here as a patient in 1980 and has been overseeing the daily running of the Han Zhong Leprosy Centre for the past seven years.
He met his wife here (she arrived at the centre in 1983). They got married in 1989, the year Mr Xiang was declared free of leprosy.
Their son has only just left the centre to study computer science at Xi’an University, six hours away, having spent his entire childhood in the leprosarium (Fr Luis Ruiz SJ and his Casa Ricci Social Services are supporting the young man in his studies.)
Mr Xiang and his family are a living testimony to the strong community life that has developed at the centre since the dark days of the 60s and 70s when the lepers were effectively left to fend for themselves while the country slid into political and economic chaos.
Since its establishment in 1954, the people in this rural outpost have helped each other face what could otherwise be a soul-crushing existence.
Patients with their hands and feet relatively intact help those without. The younger patients grow vegetables to eat and canola to sell and the rest of the time, community members play lively games of cards and Chinese chess or watch TV images of the outside world in each other’s rooms.
In spite of the relatively mild outward effects of the leprosy he suffered 20 years ago (“if your face is not good, people are afraid but your hand you can hide”) Xiang Lee says he would never leave the leprosarium.
“The neighbours are family now and I have worked hard to attain my position,” Mr Xiang says. He is the leprosarium’s chief executive officer and personnel manager, having trained as an accountant when he was 16. He also acts as Han Zhong Leprosarium’s postal officer.
Though life inside the leprosarium has brought a sense of acceptance, the Xiangs have been careful to shield their son from the fearful and caustic reaction of the outside world.
Nobody on the outside, apart from Mr Xiang’s immediate family, know that anyone in the family once suffered from leprosy.
While their son was going to school, they took great care that no-one found out where he lived, for fear of alienating him.
Instead, the brother of Mr Xiang’s wife took him in and out of the leprosarium in great secrecy.
There are five families in the leprosarium with children. The other four have three children each, some of whom stay with relatives while the others live with their parents in the leprosarium.
Mr Xiang is emphatic in telling us about the difference the presence of five Franciscan Missionaries of Mary has made to the life and well-being of the community. The sisters have been here since 2003 at the initiative of Casa Ricci Social Services who also provide 50 Yuan (AUD $9) per patient per month (there are 273 patients in total) for food, clothing, bandages and medicine against the government’s 100 yuan ($18) a month.
Mr Xiang categorises the history of the place into “before” and “after the sisters came.”
He says that bandages to cover the lepers’ seeping wounds, which many of the patients have even decades after being cured of the disease, would be washed and reused, before the sisters came, for lack of funds.
Unlike paid medical staff in the bad old days, the sisters go to the bedridden lepers who can’t gather in the courtyard to have their wounds re-dressed. They help community members with their washing of their clothes, their rooms and of themselves.
But most importantly, he says, the sisters brought a lot of joy and affection with them when they arrived; attributes which have a lasting effect.
Priest is minister, and friend
Priest, doctor, friend: Fr Zhang does it all.
By Robert Hiini
As a host, Fr Zhang would make most westerners look criminally negligent.
As The Record arrives at the Hanzhong Leprosy Centre, he’s here on his week off.
Whenever he is able, he makes the six-hour journey to Hanzhong from Xi’an Cathedral where he is stationed, to provide moral, spiritual and practical support to the centre’s 278 leprosy patients and the five nuns who look after them.
Getting up at 5am, Fr Zhang offers Mass every morning and makes a short walk down a dusty laneway with the Sisters to remove the bandages on the lepers’ "battle" scars and replace them with new ones.
Although none of the lepers in this area are infectious – there is a seperate section for new cases – the wounds and deformities caused when the disease was active require daily attention.
It is a need the Sisters and Fr Zhang are happy to meet, wearing face masks, which they wear not to protect them from leprosy, but to guard against the general unpleasantness of weeping sores.
A native of the Shaanxi province, Fr Zhang chats away merrily with his leper friends as he cleans out the cuts and sores on the lepers’ hands and feet, stopping regularly to crack a joke and bellow his signature cheeky laugh.
His affinity with the people here is not surprising. The 39-year-old priest is one of eight children born into a farming family 50km west of Xi’an.
His father and mother also worked as a secretary and as a primary school teacher, respectively, to earn enough to raise their five boys and three girls (Fr Zhang was the fourth child).
The years of Fr Zhang’s childhood were dark times for Roman Catholics and people of religion in China.
The Cultural Revolution which Chairman Mao Zedong unleashed caused a period of political anarchy characterised by internal purges orchestrated to consolidate his power andbrought with it extreme anti-religious persecution and continuing poverty for China’s rural populace.
But they got through it and Fr Zhang says that since the early 1980s things have been a lot better for Christians.
Fr Zhang might have been a builder, a carpenter or a driver like his three brothers but was instead ordained priest in 1991 – the first Chinese member of the Camillian Order – entering a minor seminary as a boy.
He became a doctor in 2002 after study and practicum has been using his medical skills around the Zhouzhi diocese ever since. He says he enjoys what he is doing. "I enjoy helping the people here and I look forward to continuing to do so for years to come."
Sisters become lepers’ family
Internal exile to the remotest parts of China and being forced to live in the harshest conditions are the standard policy for leprosy sufferers. The consequences: lifelong separation from family and normal human society. But the arrival of Franciscan Sisters has also meant a new experience for lepers – family.
By Mark Reidy
orphanage and has been at the Han Zhong Leprosy Centre since his late
adolescence says that conditions and life in general have improved
markedly since the arrival of six Franciscan Sisters.
The tragic thread that has run throughout the life of Yi Won Chin has been abandonment.
Having never known his parents, he spent his childhood years in an orphanage where no one from the world outside ever came to see him.
It was a pattern that would continue for the rest of his life.
At 15, before he could take his first steps of independence, he was diagnosed with leprosy and shut away within the walls of the Han Zhong Leprosarium.
He is 63 now and knows that this is where he will spend his final days, never having been accepted as a member of society.
Yi Won still clearly remembers the fear that he felt upon learning of his diagnosis, not only of the physical destruction that he would inevitably endure, but also of the emotional and social isolation that would come with it.
In a society that had no medical answers, it was a fear that was well founded, as the only response to the condition was to exile sufferers to the most remote corners of the country.
Yi Won found himself at the foothills of a large mountain range, far from civilisation, living within high concrete barriers that he was not permitted to cross.
He shared a small, damp room with four other sufferers, without electricity or running water, with only one set of clothes, barely enough food to survive on and a disease that soon began to wreak havoc on his body.
With visits from government doctors being infrequent and often rendered ineffective by medical and financial limitations, the sores that ensued usually became ulcerated and gangrenous and led to the loss of patients’ digits, limbs and eyesight.
Yi Won has lost all of his fingers and the gradual deterioration of his leg led to an eventual amputation below the knee.
Life was miserable, winter months were particularly harsh and patients had no idea what was occurring in the world outside. Time was spent trying to survive on meagre government rations that had to be supplemented by food produced in communal gardens. But life has taken a turn for the better in recent years.
Yi Won has his own room, a prosthetic limb and now makes money by collecting bottles, travelling around on a motorbike that was given to him by supporters of the community.
They have been sent from God, he exclaims, when asked about the arrival of the Franciscan Mary Mission sisters.
When they arrived, he said with a sparkle in his eye, he knew that he had finally found the family that he had never known.
No longer alone: Yi Won Chin, 63, who spent his childhood in an orphanage and has been at the Han Zhong Leprosy Centre since his late adolescence says that conditions and life in general have improved markedly since the arrival of six Franciscan Sisters.
Even basic care gives new life
The appalling conditions those sent to leprosariums are forced to live in are revolutionised when the arrival of Fr Ruiz’s Sisters brings simple care and medication for its long suffering inhabitants.
By Mark Reidy
The stump at the end of one of Fan Jo Chun’s arms slaps against his other hand as he chatters excitedly and a broad smile breaks across his weather-beaten face. “He is saying, ‘Thank you for your concern,” our interpreter explains as we walk towards him.
Fan Jo, 73, has called the Han Zhong Leprosarium his home for the past 54 years and explains that he is always overjoyed when visitors enter the walls.
He says that it helps him forget the many years when the only people he saw from the outside world were impersonal government medical staff who did their best to avoid any physical or emotional interaction.
It was a depressing existence, he says, in which the patients who were the least incapacitated often had to look after those who were totally incapable.
This meant that people such as Fan Jo, who has no fingers on on hand, was rarely washed and stayed in the same clothes for up to three years at a time.
In such an environment people became despondent and less vigilant for scratches and sores, which meant, because of a lack of sensation in the infected areas, that wounds would become ulcerated, leading to the destruction of the tissue and inevitably the loss of digits and limbs.
This lack of constant monitoring, combined with inadequate medical supervision, led to the rapid physical deterioration of many and untold mental anguish for the leprosarium’s residents. Crowded, unhygienic and rat-infested accommodation, along with the use of recycled bandages, contributed to this cycle of infection and reinfection.
Ill-fitting prosthetic limbs and inadequate footwear also exacerbated wounds, and drooping eyelids – a common trait of leprosy – caused many to lose their sight. It was like living in a nightmare, Fan Jo said, as he held up his fingerless hand, but a nightmare from which he and all those in Han Zhong have finally awoken.
With the arrival of the Sisters six years ago came new prosthetics, appropriate footwear, simple surgical procedures which renew sight, clean living conditions, suitable medical attention and a loving touch – and, he says, still smiling broadly, “Life has never been better”.