Iseek Cultural Center: Abu’s Story (1)--My family

Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.

My name is Abu and I am 31 this year. As a normal woman, I would have a job and a life of my own. But I am a PAH patient, so living like a normal person is a dream for me. I was diagnosed with PAH when I was 14. My twin sister was also diagnosed with PAH at the same time.  

To seek treatment, my parents took us to many hospitals around the country, which used up all of our savings and put us in debt. Doctors simply told us that current medicine could do nothing for our illness. We had to go back home and waiting for further developments.

I still remember when we were waiting for our parents in the corridor of the hospital. People passed by us with eyes full of pity, whispering, “they are so young! The doctors say they only have three years.” Incurable disease and death were something we did not understand at that time. I did not know what it meant. We just knew we had a serious heart disease which was incurable. 

My sister was more mature than I was, so she became depressed once she understood the illness. Her spirit collapsed and the health collapsed. The family was in heavy debt then and had no money for medical bills. When we were chatting, we talked about death. For me, death was no more than a scary word. I felt death was too far away to think about. I often told my sister, “if you were dead, I would die with you.” She always kept silent. Later on my sister told me “I will not die with you if you are dead.” I was shocked and sad. My sister said again, “if I die, you must live well, eat well, and look after things for me. You have to live for me. If you were dead, I would do the same.”

One month after the talk, my sister died due to heart failure. I finally understood what death is. My sister who lived side by side with me for 17 years left me forever.I lost her forever. I was destroyed by the loss of my sister. I kept thinking that I’d rather die quickly so that I could keep her company. My parents were very concerned about me, but helpless.

Then one day, I heard a colleague of my father say to him, “look at you, Lao Guo, your hair has become white. You lost a daughter and do not know how long another daughter can sustain. We are very sorry about that”. I noticed that my father’s hair was almost white. He seemed 10 years older. There were more wrinkles on my mother’s face. They were so sad and gaunt. Seeing this situation, I knew I could not give up. They had lost a daughter and they could not afford to lose another. After that day, I grew up. 

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Because of my illness, I had been staying at home and did not go to school. I had no job. People often asked how old I was and why I did not go to school or why I had no job. I really did not know how to answer such questions. 

In 2006, my family had a computer and I began to learn about PAH on the internet. I learned there were other people like me around the country. Meanwhile, I connected with a doctor with PAH treatment experience. In the same year, I experienced heart failure because of the cold. I was saved in the local doctor thanks to a local doctor's treatment. 

In 2007, my parents took me to Beijing and found a doctor who did a comprehensive exam. My illness became more serious. I got to know Huang Huan at that time, who visited us in the hospital as a delegate of the patients in Beijing. 

In 2007, there were medicines to treat PAH, but they were expensive. The cheapest one cost 1000 RMB a month. I took the medicine for a while, but stopped because it was too much for my family. I became worse after stopping the treatment. I decided to try Chinese medicine. 

In June, 2009, Zi Ling’er, a patient friend of mine in Shandong, told me there was a Chinese medicine doctor in Shanghai who had effective medicine. I went to Shanghai and met Zi Ling’er. We took medicine together in Shanghai. This was a very memorable time in my life.

Original article written by A Bu, translated by Maggie Li, edited by Yanyan Zhang