Chapter 8 Living in the Darkness
Have you ever had the experience of looking after patients? You may find that many patients can stay quite healthy if they get more care and support in their life and work.. On the contrary, some patients, especially the AIDS patients, die early just because of heavy pressure, both visible and invisible. We suffer more discrimination than patients with any other disease.
By Li Jinzhang
June 2002, the world Cup began in Soul, Korea. Fans in Taiwan were kindled with intense passion. Li Jinzhang, a man who never watched TV but only listened to radio, was also affected by the passion. He went cheerly to the neighbor’s to watch the live broadcast. However, hardly had he sat down when abruptly the host took his grandson away.
Li immediately knew the meaning, “They are afraid that I might infect the child.” That was the result of his choice to stand up and face the public, not identification and encouragement, but fear and discrimination.Sometimes Li went to visit his sisters. Once, while he was chatting with his nephews, he took out scissors to manicure.
It was a casual activity, but the relatives began to feel uneasy at the nails on the ground. From that moment, he knew there was no place for him other than his own home.It was 9 am, 12th July, 2002 when Li Jinzhang turned up at the gate of Chinese Medical University Hopital.
He came for a routine examination. His dress was quite appropriate, a stripe shirt, old and baggy, hanging on his bony body, which made him appeared thinner and taller.Fifteen minutes later, Li Jinzhang got his test form and was ready for blood test.
There was a red sign on it: “CAUTION: INFECTION”. It is a reminder for doctors and nurses that they are facing AIDS patients. Li felt puzzled. Why didn’t they use a sign “CAUTION: BLEEDING” to remind nurses to be more gentle when operating, because the hemo patients were more fragile and more likely to get hurt.
The sign meant nothing to Li Jinzhang. He got hepatitis C during blood transfusion long ago. Then came AIDS through the contaminated coagulation factors, followed by gall stone. He said he had got every “prize” people could “expect”. The sign was intended to protect the doctors and nurses, but it also made Li feel different.
After blood test, Li Jinzhang went on to the next examination, in silence. While waiting for ultrasound scan, he seemed tired, “Can’t imagine there is only one scan department in such a big hospital! I got a fever last night, so I didn’t mean to come. But appointment is appointment.” Li Jinzhang didn’t like hospitals.
This time he came to Chinese Medical University Hostipal just because we told him that we need a photo record of hemophiliacs’ meditation. Only in this way could we manage to get him a complete physical examination. During the long hours waiting for ultrasound scan, Li fell asleep in the chair.It was already twelve o’clock when both the examinations finished. Stepping out of the hospital gate, Li Jinzhang felt relieved and smiled. Our topics were still about disease . All of a sudden, he asked: “How can I live longer?” Dumbfounded, we didn’t know how to answer. Li told us a “secret”, he forced himself to drink “An Su”(安素), a nutritious drink, in order to build up strength. “It needs 33 shakes before drinking.” he emphasized. We were touched by his humor, something so rare in a miserable life. We looked at each other and shared the moment of Joy. Li couldn’t wait a minute to return home. Although a little weak, he drove all the way back to Zhanghua. It was a used car given by his elder brother. Throughout the journey, we talked nothing else but hemo and AIDS. We mentioned the importance of medicine on AIDS control, but Li didn’t agree. He took Xiao Wai for example, whom he described as a “lab mouse”. “I have hepatitis C and gall stone. Who can tell the side effects of Cocktail Therapy. What’s more, the medicine is harmful to the stomach ….”
For years, Li Jinzhang held a negative opinion against medicine. Maybe it was a subconscious rebellion against the fate. Li had much to say, “when bleeding occurs, patients should move as little a possible and inject coagulation factors regularly until it works.” Li Jinzhang never felt tired when talking about symptoms of bleeding and therapy. Anything related to hemo, such as meditation, blood transfusion or AIDS infection, would interest him. However, once we talked about experiences after AIDS infection or care for hemo-AIDS victims, his face became grave. It was a unhealed wound on his heart.The smile on his face faded. His voice slowed down while his eyes sharpened, even kind of angry.
“Some people told me that we are vulnerable groups and that the government would never care for us. The news media reported the event just for a high audience rating.” Li repeated other people’s words, however, he himself never believed so. He stood up to face the public not only for the late Justice, but also with a faith to show the world the realities of hemo-AIDS victims. “The maintenance treatment for hemo-AIDS patients is very important. I would accept if there were regular mental rehabilitation.” Li told us the truth. He seldom talked about any treatment after he left National Taiwan University Hospital.
Years of hardship exhausted him mentally any physically. It seemed that he had no other choice but to move from Taipei back to Zhanghua. “My condition is not well, so I can’t live a healthy life. ”After returning hometown, Li’s health began to deteriorate. Once a week, his sister, who lived not far away, came to see him and do some cleaning, just like many years ago, when the sister took care of her little brother.
