The Leprosy Project
The goal of The Leprosy Project is to see the villages we serve free from leprosy and fully accepted into society.
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Being Alive Is Better Than Anything Else – The story of Qian Zhichang

9/28/2015

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Despite the harsh weather and poor living conditions in Zhaotong, Yunnan, Qian had always been a happy child with loving parents and sisters. All was well until the winter of 1956. Qian was 12 when his father was diagnosed with leprosy. Out of fear and ignorance of leprosy, villagers burned Qian’s father to death. Later that year, while still grieving for his father, Qian was also diagnosed with leprosy. 

Qian was expelled from school and everyone turned their back on him. The rejection and alienation were hard to bear especially from those to whom he was close, teachers, peers and friends. Encouraged by his uncle, Qian was determined to live and seek for medical treatment elsewhere. “Being alive is better than anything else”, his uncle said. Avoiding the same fate as his father, Qian left his home in Zhaotong. 
Leaving home was a decision supported by his mother and sisters for they too hoped for survival opportunities for Qian outside Zhaotong. In his hometown.

Embarking on his first ever journey, Qian had only ¥5, equivalent to less than one US dollar today. Begging along the way, he found an orphanage he thought would be his refuge. The orphanage however, drove him away after discovering about his illness. Wandering from place to place, he ended up in Puge where he begged for a living and found shelter in a cave in Yongan, a scarcely populated town. The cave was his home for the next six years. With some simple farming, Qian was able to sustain a living with his own crops. Darkness and threats from wild animals were not as bad as the worsening of leprosy. The lack of medicine led to the development of ulcers on his legs.

Eventually he met Jike Mosu who told Qian about the Leprosy Rehabilitation Centre in Xiangyang. Jike arranged for Qian to stay in a straw hut. He even arranged horses to transport Qian's belongings and food from the cave to his new home. The staff at the centre were friendly and helpful. Patients were allowed to stay as long as their illness required them to or if they wished to even after their recovery. There were approximately 100 leprosy patients.

Qian's condition, however, deteriorated.

His life was hard. Although he was allocated 20 acres of farmland, leprosy had led to permanent impairment of his legs and he had to walk on knees. His finger joints were so disfigured that he developed the condition known as "clawed hands”. To work in the fields, he invented his own tools and equipment that enabled his movements in the fields and farming activities. 

Many times he thought of ending his own life because of the pain and sufferings caused by leprosy but Qian was strong. He hung on because he had sworn he would leave his hometown to live. He was hopeful about his recovery and reunion with his family one day.  His uncle’s advice became his motto and he was determined to live. Perseverance proved its worth when the multi-drug therapy (MDT) became available and Qian's leprosy was cured. The disabilities, however, were permanent. 

As the world view changed leprosy drew more attention and, efforts were made on rehabilitation and educating the community about the illness.  While discrimination against leprosy patients was still common, more services were developed by charity organizations and NGO's to support patients. Recovered patients began reconnecting with society. In 2009 Qian with the help of The Leprosy Project and Phoenix TV was able to reunite with his family and friends in Zhaotong. After years of living as an outcast, it was a comfort to meet his family, nephews and their families and children. He applied for residence in a home for the elderly in the area but due to his history of leprosy the home refused him. He decided to return to Senkeluo, a small village in Puge where he had lived for so many years. Thanks to the support from the staff at The Leprosy Project he had been able to live independently by farming and selling his own produce.

Qian had experienced misfortunes and hardship throughout his life but he was thankful for the opportunities he had had for restarting a healthy and independent life. In 2013, when he learnt about the earthquake in Ya-an on 20th April, he decided to return the favors he had received by contributing ¥5,000 to the victims who suffered the loss of homes and families like he did years back. Mr. Lin from the Education Bureau in Sichuan advised him to keep some of his savings and donate only ¥150. Qian hoped the survivors of the disaster area would summon their courage and face the difficulties ahead. Qian truly believes there is always hope. 

He happened to have the chance to visit Er-mei Mountain and other places in Chengdu in 2013 supported by kind donations from the society. It was an eye-opening experience and he looked forward to more opportunities in future as the world became more accepting towards patients affected by leprosy (PALs). His uncle's advice echoed in his mind, "Being alive, it’s better than anything else."

Postscript:
The TV documentary “Homecoming Journey of a PAL” produced by Mr. Aaron Ren of Phoenix TV has been broadcasted nation-wide in China. You can watch it here.
Qian meets sister-in-law
Qian meets his sister-in-law for the first time since he left his home at the age of 12.
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Jiji Rihuo

11/5/2013

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Jiji Rihuo carefully wiped the stool clean before offering it to his guests. He expressed his gratitude to The Leprosy Project. At first he was reluctant to shake hands since for most of his life people avoided contact with him. When we patted his shoulder he relaxed and reached out to shake our hands. Following is his story: I was born in Tuojue Township of Butuo County in 1945. I was the one of three children and had and enviable life with my parents, sister and brother. My father was the accountant for our village in Butuo. I even had the chance to go to school. I loved studying. I went to school happily every day. I hoped to go to secondary school, but in the winter of 1955 when I was 10, I began to lose feeling in my left foot and my skin became numb. I remember this clearly. When I told my father, he did not say anything, but I could see tears running down his face.
Afterwards I regretted telling my father what was happening to me. I should have hidden everything. People from the Township Government and Sanitary Station brought medical equipment to my home every day. Each time they came to our home my mother cried. As time went by, our friends, relatives, and neighbors began avoiding me.
I was isolated and it was very difficult for my parents and sister. My younger brother was too young to understand what was happening, but the rest of the family felt the shame of my illness.

A year after I was diagnosed with the disease, my father, unable to bear the disgrace, collapsed and died. I had brought misfortune and humiliation to our family and I entertained thoughts of suicide. My mother’s kindness saved me. She tried to re-enroll me in school but no school would take me due to my illness. Though we were shunned, my mother never deserted me. My sister tried to visit, but her husband’s family did not allow her to. She was locked up by her husband. She had to live a life without light because of me.

Jiji Ruhuo speaks with Project staff about his life

We lived in isolation for several years. It was time for my brother to get married but no one wanted to marry him. I knew that if I stayed in the village he would never be able to get married. I had to leave for the sake of my brother. Through the County Government I found out that there was a hospital for leprosy in Puge.
My mother and I walked for 4 days to get to the leprosy hospital in Xiangyang Township of Puge County. I was 17. We found a shabby cottage in the village of Senkeluo to live in. We were also assigned work in the field. Fortunately, in this village nobody discriminated against us. We were actually valued by the other villagers. Since I had two years of education, I was assigned a clerical job in the village. I did not have to do manual labor and could even help my mother and lessen her work load.

Honestly, it was not a bad thing that we moved to Puge. I found happiness and a family here. I eventually became a village official. Many people worried about me not being married and tried to set me up. My mother was anxious to see me get married while she was still alive. With the help of other villagers, I met and married the most beautiful girl in this village, Jihuo Moerluo. I was 28.

That is when my good life began. People saw that I was an honest and responsible person, and they let me become the accountant of the village. I did this for more than 30 years. I retired in 2009 when I was 64.

Though my life has been simple, I feel content and happy. My children are all married and have their own families; they no longer have to live with the risk of contracting leprosy. Life has become better and better. I would like to wish everyone in the village a better life and hope that every child will have the chance to receive a better education.


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