An eight-year-old girl, five Chinese Sisters and a handful of dedicated charity workers turn the tide against overwhelming odds.
God had other plans
By Robert Hiini
We were told the girl in this photo had only days to live.
What those caring for her thought was a stomach perforation turned out to be cancer. Her stomach was riddled with it.
The doctors sewed her back up saying there was no point continuing with the operation. The only thing to do was to make her comfortable and to prepare for the end.
Her name is Zou Qian (in China, the surname comes first. Her first name is pronounced "Chee-aan.") She has the Human Immunodeficiency Virus or HIV for short, a victim of the HIV/AIDS pandemic; China’s "new leprosy."
She is eight years old.
Little Qian had been hospitalised the day before we arrived: the first day of our week-long stint at the Hongjiang AIDS Loving Care Centre in the country’s south-east.
Qian likely contracted the virus while in utero or through her mother’s breast milk shortly after birth – a tragically avoidable occurence (less than one per cent of children born to HIV-infected women contract the disease when delivered by caesarian and given formula milk from birth).
Born into crippling rural poverty in a country of nearly 1.5 billion people, the eight-year-old Qian seemed destined, with the premature demise of her parents, for an early, painful and lonely death.
It could have been the way things turned out. But it isn’t.
Instead, she is surrounded in the hospital by five women whose maternal love for Qian is palpable – five women in their 20s and 30s, Sisters of Divine Providence, who, for the past week, have taken turns to be with the slightly-built child for every hour of wake and sleep.
Ever since Qian’s mother died as a result of the disease in 2005, Qian has called the Hongjiang AIDS Loving Care Centre "home," but the state-owned facility is only made so by the Sisters and her fellow HIV/AIDS carriers who form a tight-knit and empathetic community.
The Sisters have been looking after live-in and dying HIV/AIDS patients at the centre since 2003 thanks to the support of Casa Ricci Social Services which pays for their food and living expenses and provides the centre’s patients with food and a small income.
With only six staff, the Macau-based charity supports over 100 such projects caring for HIV/AIDS and leprosy patients throughout mainland China.
My colleague Mark had inadvertedly seen the Sisters’ leader, Sr Pan, weeping in the kitchen, because of Qian’s wrenching pain and impending death.
A warm and savvy 36-year-old, Sr Pan has already journeyed with 34 AIDS carriers to their final release.
The doctors at the Hongjiang Hospital where Qian was taken had laboured for a week prior, trying to work out what was wrong with her after she started complaining of severe stomach pain.
Her father, a farmer who had himself sustained head injuries in a traffic accident shortly after his wife died, was contacted and advised to make the three-day journey to the hospital to decide what should be done.
Due to the dismantling of universal healthcare from the late 1970s, all options for little Qian included considerable cost, such as a 2000 Yuan (AUD $380) private ambulance ride to a better-equipped hospital in Changsha, two hours away.
Her condition worsening, the doctors in Hongjiang decided to operate immediately and were confronted with the discovery of a large inoperable tumor and several smaller ones.
After we had returned to Australia, we sent our consolations by email, knowing that one of the sisters, Sr Jacqueline Guo CDP (Congregation of Divine Providence), who helped translate for us, would be able to relate to the Sisters and patients, our feelings of sorrow.
Then we received news we were not expecting.
Qing had made a miraculous recovery and was back with the Sisters and her community at the Loving Care Centre.
Whether a supernatural answer to anguished nights of the Sisters’ prayers or a staggering case of misdiagnosis, faith, hope and love had been rewarded with life.
This was news which encapsulated our experience of China. Against overwhelming odds, where good will and and openness to God’s Spirit abide, great, unexpected and life-affirming things can happen.
But Qian’s physical recovery is not the only miracle in China.
The work of the Sisters at the Han Zhong Leprosy Centre, our other stop, who look after 273 leprosy sufferers in the north-west, provided us with countless other examples.
In 2009, Jesus Christ may be suffering but he is at the same time alive and well in China, in the lives of those who are shunned and those who seek to follow him.
In a country of harsh realities and epic challenges, the human vocation to love can be seen in its full splendour; in the embrace and support of outcast communities, in the care of leprosy and AIDS sufferers like Zou Qian and in the ongoing work of Casa Ricci Social Services, the humble charity outfit that makes it all happen.
Into the valley of darkness
These young Chinese Sisters accompany those in their care to the very end. As they do, they radiate light and love in the face of death – but it has been a struggle.
By Robert Hiini
When the first child died at the Honjiang AIDS Loving Care Centre it shook the Sisters who live there – and the staff of Casa Ricci Social Services who support them – to the core.
It was a dark time for everyone.
Casa Ricci, the Macau-based charity that is trying to meet the human challenges of the HIV/AIDS pandemic head-on, worked with the local government to establish the centre back in 2003, arranging for female Religious from the Sisters of Divine Providence to be sent there to provide emotional, spiritual and practical care for its HIV/AIDS patients.
“That child taught us a very important lesson,” Casa Ricci’s Director, Fr Fernando Azpinoz SJ says. “We are here to celebrate life, not to await death. This is not a place of death. It is a place for the living.”
Their grieving period was brief. For the sake of the other patients, it had to be.
They said goodbye to the boy and got on with the everyday tasks of showering and feeding the dying adult patients and being loving, stand-in parents to the centre’s other HIV-positive children.
When The Record visited in March, the centre was home to ten adults and six children, some of whom have full-blown AIDS and are dying but most of whom are HIV-positive, preferring the safe environment at the centre, away from the stares and the rejection of the outside world.
Having relocated from its original site on the outskirts of Hongjiang, the centre has occupied a once-abandoned elementary school in the centre of the port city since 2005.
Using donations received from donors in Spain, Canada, the US and Australia, Casa Ricci provided the funds to refurbish the school to make it suitable for residential care.
“We wanted to help set up a place where people could live with dignity in a loving atmosphere,” Casa Ricci’s founder Fr Luis Ruiz SJ has said. “Especially when their bodies become weak and helpless.”
Before its relocation, the local government spent a considerable sum providing surrounding residents with the facts about the Acquired Immune Deficiency Syndrome and its precursor, the Human Immunodefiency Virus.
HIV attacks the body’s immune system, reducing the body’s helper T cells that fight infection, eventually developing into full-blown AIDS, a state of complete vulnerability to infection, eventually resulting in death.
The government explained exhaustively that HIV could only be contracted through blood or sexual transmission.
While some were resistent, fearing a disease that, in China, is often thought to be contracted through basic social interaction, initial anxiety has dissipated over time through the practical example of the Sisters who live with the patients and yet do not suffer any effects.
To date, 76 people have come through its gates; some to return to their families while others have chosen to make the centre their permanent home.
The Sisters have accompanied 34 of those patients to their deaths and although not overt or aggressive in their evangelism, the Sisters tell us that 32 were baptised before the end.
Government nurses and doctors provide for the patients’ medical needs but the human and spiritual touch is provided by the Sisters – five warm and savvy young women in their 20s and 30s from the country’s north-east, near Beijing.
When the Sisters’ superior, Sr Pan Yu Mei, came here in 2005 at the relatively young age of 33, she had no experience of death and dying.
Before taking final vows she had undergone training in Chinese medicine – in massage and acccupuncture – but not in palliative care or in coping with her own grief resulting from the very practical hands-on work she does at the centre.
She had not even experienced death in her own family. That first death, she says, made its mark.
“It was so hard to bear when that happened. I had to force myself to remember that he is now enjoying eternal happiness in heaven,” Sr Pan says.
“For the first year, I was too terrified to take the night shift for fear of experiencing that again.”
“For the first year, I was too terrified to take the night shift for fear of experiencing that again.”
After that year, she also overcame her fear of dead bodies and was able to join the other sisters in clothing them and preparing them for their funeral and cremation (in China, it is a legal requirement that the bodies of AIDS victims be burned).
Many of the patients’ families are still so terrified of the disease that, even after death, the ashes of dead loved ones regularly end up in landfill.
These days, Sr Pan says she is very happy doing this work and counts it a privilege to be so close to Christ in the patients she attends to, particularly the children for whom the Sisters have an obvious abundance of affection.
The adult members of the community also love and guard the children as they play games and do the very ordinary things that kids do, around the centre’s basketball court. They too, feel the loss of a child keenly.
“Children don’t usually have the resistance of adults,” Sr Pan says, explaining that the seven year old He Ju, a confident and energetic young boy, might make it to his tenth birthday but is unlikely to live past his twentieth.
With her other Sisters, Sr Ma says she is sustained through morning and evening prayer and daily reception of the Blessed Sacrament.
There are no priests around for more than 100km so the Sisters only get to Mass on major feast days although occasionally a priest will make an extended visit from Macau.
It is not a life for everyone, Sr Pan says, but as a 36-year-old woman who has recovered from being thrown in the deep end of human suffering and palliative care, she says she looks forward to continuing and improving the Sisters’ contribution to the lives and wellbeing of their patients.
Separation is virus’s other suffering
A patient at the Hongjiang AIDS Centre describes the pain of being seperated from his son.
By Mark Reidy
Two years ago Du Chang Qo was working as a surveyor, happily married with a newborn son and life could not have been better.
Today he is alone, dying and is forced to visit his son under a veil of secrecy.
Du Chang’s tragic transformation began when, at 35, he was diagnosed with HIV and his life began to systematically fall apart.
He could no longer work. People who knew of his illness would cross the road when they saw him coming.
He was forced to leave his one-year-old in the care of his elderly parents and he was ostracised to the point where he could only find refuge at the Hongjiang AIDS Centre, many hours travel from his home town.
It was a time of great darkness. The only light in his life came from the nuns at the centre who showed him love when all others had abandoned him.
“There is serious misunderstanding and discrimination regarding AIDS in my hometown”, he said.
“People have no knowledge of the virus and this ignorance leads to fear.”
The greatest pain he has to endure, he says, is the minimal contact he has with his child because of the cost of travel. He is only able to visit every two or three months – and then he must sneak in undetected so that his son will not be stigmatised by his contact.
There is a common perception in rural areas of China that the virus can be transferred through ordinary physical or social interaction; this misconception results in the isolation of carriers.
It is an ignorance that Du Chong hopes will be conquered through public education, so that the dignity of sufferers will be restored.
Such understanding, he believes, will evoke sympathy rather than fear and will create a better future for the next generation who will not be ostracised by misunderstanding.
He hopes that the Sisters will one day receive more funds so that they can organise more activities and social outings.
He says that a craft program begun in recent times has allowed him to utilise his time and talents, but the lack of visitors and reluctance of the local people to visit the Centre means that sales of patients’ products are minimal. He is hoping that as the Sisters presence encourages more interaction with the outside world, he will be able to make more sales and visit his son more regularly.
On top of all else, Du Chong also carries a burden for his elderly parents who are going blind and struggling with the responsibility of caring for his young child.
He has no idea what the future will hold for himself or his son, as he knows the reality of death is never far away. But he does live with the hope that the world that his son will grow up in, will be far more understanding than the one he lives in today.
Yen Chun dreams of homecoming
Getting the appropriate healthcare and being safe from community reprisals has its drawbacks, woman tells The Record.
By Robert Hiini
I should have known better. When I asked Tan Yen Chun, 36, what it was like to be seperated from her husband her reply could not have been more natural and heartfelt. She burst into tears and I wished, not for the first or last time in The Record’s two week journey through China, that I spoke Mandarin.
Mrs Tan has lived as a patient at the Hongjiang AIDS Loving Care Centre with her daughter and only child, Tan Chen Dan, 5, since May 2007. She cannot afford to travel home.
The two-day trip by train – the only economical option for Mrs Chun – costs 100 Yuan or $18 AUS return. While she receives 218 Yuan ($39 AUS) per month from the government, most of her income goes towards paying a teacher for her HIV-positive daughter who, because the community’s continued fear and ignorance, is unable to safely attend a public school with her peers.
As is common in households throughout China, her husband’s invalid father and brother live in the family home and are supported by the couple; there is no universal health coverage and institutionalised aged-care is not only unheard of, but culturally unthinkable.
“I don’t want to be a burden,” Mrs Chun told us. “My father-in-law needs help. I save as much as I can to send back.”
In an ideal world, she says that she would love to be out shopping for small trinkets with her daughter but is instead left to worry about the psychological impact poverty will have on her child.
Sister Guo Fu Nin, the 32-year-old Divine Providence Sister who looks after the centre’s adult HIV/AIDS patients, says that if she could improve one thing, it would be the psychological care of patients.
With her fellow Sisters, she helps centre staff with showering the female patients who cannot shower themselves (the men are assisted by their able-bodied fellows) as well as handling and preparing the bodies of those who have died for funerals.
The challenging circumstances of patients such as Mrs Chun, however, require a different kind of attention, she says, lamenting the lack of counsellors and pyschologists in the area. The expertise and the funding simply aren’t available. Instead, the Sisters have created the most hopeful and loving atmosphere they can.
Sr Guo told us that they are often faced with the problematic situation of housing patients who feel dejected with those who have a more optimistic or contented outlook. Like her superior, Sr Pan Yu Mei, Sr Guo had never dealt with dying and its associated mental anguish in her life prior to being assigned to the centre. The calm and collected Sister began a craft workshop for patients in July 2007 as much to keep their minds agile and diverted from their disease as to provide patients with an avenue for earning a small income.
With no previous experience, Sr Guo convinced an elderly gentleman selling craft in the town to teach her the ins and outs of producing gift items for sale – skills which she has since passed-on to the centre’s patients. Tan Yen Chun makes holy items – hanging lanterns, flower arrangements and inspiring placards – with two other patients.
She’s fighting back against her sense of confinement and with this means of earning, hopes to be able to see her family at home again, sooner rather than later.
Want to help? Here’s how…
News of the scale and intensity of his love for some of the most shunned and dejected people, whose ancient ailment is no less feared in China than in biblical times, has reached the four corners of the earth.
In response to The Record’s report about the life-embracing work of Fr Luis Ruiz SJ and Casa Ricci Social Services, the Catholic Faithful of Perth dug deep to donate almost $70,000 to the cause. At the time, we were advised that the amount was almost enough to build two new leprosariums.
In the three intervening years, the cost of building as well as food and medicine have increased markedly, particularly in the wake of last year’s earthquake that killed over 68,000 people and the global financial crisis which has put a severe dampener on donations.
Fr Ruiz says he never worries about money but trusts in the Lord. "It’s not good to think too much," he says with a smile.
"We just take things one step at a time and do the work at hand. God will take care of everything else."
His belief in the goodness of God is striking. "When you are not afraid of death," he says, "you are not afraid of anything." He says that the people he has worked with and the people who, through their donations, make the work possible, are like members of his own family.
Casa Ricci staff and Fr Ruiz pray for their donors, volunteers and workers everyday. Fr Ruiz still signs and sends all of his letters and donor updates personally.
"Communication is the key," he says, desirous that donors know what Casa Ricci Social Services have done with their money.
He supports over 88 initiatives throughout China and I ask Fr Ruiz how they do so much with the money they receive. "The answer is, ‘I don’t know.’ We are really in the hands of the Lord."
Donations to the work of Fr Ruiz and Casa Ricci Social Service can be made to:
For Casa Ricci
CO/- Fr Phil Crotty
Jesuit Missions
PO Box 193 North Sydney NSW 2059
PH: 02 9955 8585
