Because of my investigative reporting, incidentally I came across Lee jin-chang’s special life.  Like most others, he experienced many uncertainties of life, high and low, sweet and bitter. Unlike others, he suffered from hemophilia and AIDS at one time in his 44 years of life. Although he had once surrendered, he struggled to strive for late justice with all his strength and didn’t yield himself to destiny.

Hemophilia—AIDS, a raher unfamiliar term for most people, became a lifelong nightmare for 53 hemophiliac infected with HIV due to injection of blood clotting factor.  Although hemophilia has been replicated and passed along for thousands years in human blood, and AIDS has also been discovered for more than twenty-seven years, most people in our society still misunderstand the disease rather than been understanding and sympathetic. Hemophilia AIDS patients are compelled to isolate themselves from people, and eventually die without being noticed.

Hemophilia AIDS patients have been the weakest among the weak. Under such difficult conditions, fortunately, Leejin-chang, the emulous Hemophilia AIDS patient, disregarded all scruples and stood up to face mass media, doctors, and government officials and revealed his own sufferings and experiences to the public. Suffering from the disease compelled this indifferent person to experience an unusual way of life.

Standing up again from a succession of frustrations, Lee jin-chang learned to face fearlessly and accepted with ease his own difficult condition and lived with dignity and confidence. Furthermore, he kept a diary of his own precious life which was full of blood and tears in the struggle between a discriminated patient and the monster medical system.

Having experienced the pain of articular bleeding and hydrarthrosis, and having endured the “grace ” of AIDS, Hemophilia AIDS patients began to develop amazing willpower to survive a crisis while experiencing kindness as well as cruelty of the surrounding people.

Life is a one-way street, and everyone will be dead in the end. Although Lee jin-chang lost the fight with the disease and eventually left the world with regret, he still was concerned, at the time of death, when the bill, “the regulation of compensation for AIDS suffers infected by drug”, will pas the legislation. He was also concerned whether Hemophilia AIDS patients can receive fair medical care, and how the surviving family members live after the patient’s death.

When Lee jin-chang was still alive, he had revealed his love many times to his grandmother, parents, elder sister, families and friends, confessed that he could not repay them forever. This book is written in memory of a brave man who had stood up for dignity of life during his lifelong struggle against hemophilia-AIDS.

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, 12^th 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.

Chapter 9  Stand up Against AIDS

Money means nothing to me. It’s just like toilet paper.                                                        By Li Jinzhang  

On May 23, 2003, not long after AH Xiang’s death, the report about hemo-AIDS infection in Asia hit the headline of New York Times. Reporters interviewed Li Jinzhang in Zhanghua. For the first time, Li appeared on a international media. The news report gave new hope to the victims in Taiwan. They began a international law suit against the American company, Bayer. In no time, law offices from the US and Taiwan rushed to the victims. The hemo-AIDS victims turned from a group that was struggling badly a few years ago into one of the hottest spots.

In October 2003, the law suit was still going on. Li borrowed a used car from his brother. He paid an art workshop 600 NTD and asked them to make a poster AIDS Prevention, red and bold. Then he drove to AH Xiang’s house, where he and AH Xiang’s brothers put the poster on the car windows.

“Money means nothing to me. It’s just like toilet paper.” After his best friend, AH Xiang’s death, Li Jinzhang made up his mind to live a different life. He would no longer talk about the past, such as how they got infected. Instead, he would devote himself to the prevention of AIDS.

During his visit in Taipei, Li Jinzhang toured around Ximenting(西門町), where many youngsters like to hang out. Standing on the sidewalk, Li murmured to himself, “Some day I will organize pop concerts here. I will hand out leaflets to the young people and tell them the importance of AIDS prevention.” After that, he limped across the zebra line and headed for the coach station to return his hometown in Zhanghua.

Li Jinzhang said, “I kept asking myself, what will others think of me ? Are they afraid of me ? So I am not willing to go out” Despite the fear of discrimination, he managed to stand up and go outside, because he had a dream. He bought hundreds of condoms and put them into small red packs, together with a note “Say No to AIDS, Stay Healthy Forever.” When it was time the middle schools were over and streams of students were coming out, he would drive his old car, with the red bold poster AIDS Prevention, to the school gate and hand out the red packs. But some students just kept the condoms and threw the red packs away.

“When the new year comes, I will put one dollar inside each pack. Then, people won’t throw the packs away.” Li planned. Some people thought he was stupid. They said it was the government’s duty to prevent AIDS. They advised him to keep the money he got from the medicine factory for himself and live a better life. However, he asked friend to trust the money and set some aside, which he used in the published of the book he wrote about his infection and his striving. He insisted that “every single penny should be spent on AIDS prevention.”

Besides schools, Li Jinzhang also went to train station to hand out the red packs. A forty-year-old taxi driver was interested. He opened the red pack and joked: “How do people get it (he meant AIDS), through prostitutes?” Li Jinzhang also smiled, “Yes! It’s safest to use condoms all the time.” Two high school students came up for the condom, “ How can we contact you if we need more ?”Li said to them, “You can buy in a drugstore”. After all was done, Li made his way home. The car was full of so many cardboard boxes with condoms and leaflets that there was hardly any room left. Li Jinzhang felt contented, “Now people will notice this car even when I’m not handing out red packs.”  Li Jinzhang knew that what he could do was limited. But he would never give up the dream, which he stuck up to all his life. He said, “I am quite aware of the difficulties. But if nobody stood up to try, the dream would die. ” He wished to live longer because he had so many things to do.  

Unfortunately, just before the traditional Chinese new year, he went to the hospital because of  prolonged cough. He was diagnosed TB. He used to hate any medicine, but this time he began to take medicine for a Whole month! X-ray showed that the disease was under control and not longer infectious. It would take several months to cure the TB. And the side effects of medicine were sometimes unbearable. But Li made up his mind to finish the treatment because he wanted to live. He even gave up smoking, his only “enjoyment.” Taking medicine and giving up smoking were two major decision made by Li Jinzhang. He really wanted to live. Life is short and full of sufferings. However, once you stop worrying about these, you will find a world much wider. 

In Autumn 2003, Li Jinzhang, still weak, came to Taipei again. His deformed joints confined him. He could only limp slowly. He became even thinner and his cheeks were hollow. Together with volunteer, lawyers and some victims, he visited the Department of Health to appeal for establishing “law of hemo-AIDS victims”. But the tragic fate struck them again. Mr. L, a Hemo patient whose body was quite strong, had a car accident. He was severely hurt in the head and remained in a heavy stupor.

The intracranial hemorrhage was so severe that blood kept flowing out from nose, mouth and ears even after the coagulation factor was infused. The nostrils were stuffed with soft paper, but it didn’t work. The bleeding could not be stopped. In the end, Mr. L became turgid and the doctor sent notice of critical illness. Mrs. L fainted outside the ICU room. Sons and daughters and relatives took turns to keep watch. At that time Li was too weak to travel the long way to the hospital. He himself had been lying in the bed for many day. He didn’t even have enough strength to talk on the phone. A few syllables would exhaust him.

Mr. L passed away. The next day, his old mother drank pesticide and died. She wished to accompany her dear son. Half awake half asleep, Li Jinzhang knew about the death of Mr. L. At that time, he was so weak that he was not able to answer the phone. Nobody knew what he was thinking about.

Chapter Ten   Race against Time     

Whose fault? Is it our own fault just because we were born here in Taiwan or just because we were hemophiliacs and depended on blood transfusion? I never think it a tragedy to “be myself”. But too many tragedies I have witnessed, which I believe nobody wishes to see again. I hope we can try our best, together. Don’t be afraid of AIDS. Don’t regard us as aliens. After all, judging other fairly is also a respect to yourself. That’s all I want to say.                         

                                                       By LI Jinzhang     

     “I know you are keeping a record of my life, including my death.” One day, Li spoke to me on the phone, straight forward. It was his character, frank and honest. A shiver racked me and I was struggling to preserve my composure. There was something sonorous and concise, calm and lonely in his comments that I couldn’t deny. “Death may be part of the recording, but absolutely not our ultimate aim.”         

     At the time when we came to an agreement on keeping a record of Li’s life, no one was sure of the consequences. We had reason to worry about the unfavorable effects on his family and friends. However, hemo-AIDS victims passed away one by one during the last two decades. We had no other choice but to start it.    

     At the end of 2003, Li got even worse after a long time ill in bed. He was too weak to speak, not to say drive to hospital. Simple movements like answering the phone would exhaust him. He could hardly say a single complete sentence. A couple of short words were what he could manage to utter. Despite the situation, he wouldn’t bother his sister or friends. He just lay in his old house, alone, enduring the pain all over the body, as well as the pain in the heart. While he was awake, he would close his eyes, deep in thought.      

     Seeing his half-awake half-asleep condition, his family hurried to take him to Taipei. In the emergency room, Li seemed to have much to say. Another patient, Xiao Wu came to see him. Li caught the hem of his dress and didn’t let him leave. Because of the severe condition, Li was soon hospitalized in ICU. After examination, doctor was surprised to find that virus had affected so deep into the bones. He said he couldn’t imagine how one person was able to stand such great pain for so long time.    

     Mr. S, a relative of a patient, showed a prescription of Chinese herb. Li always refused Cocktail Therapy during his rest at hometown. On the contrary, he firmly believed in traditional Chinese medicine. Friends talked over how to persuade him to take the medicine. Xiao Wu put forward a suggestion. He said only a beautiful girl could make it. A seductive tone, he said, Li would obey.Friends joked and laughed, the black mood in the room eased slightly. Li’s old mom managed to have her meal. At last, Li agreed to take the medicine, even without a pretty nurse. But it was too late; he soon lapsed into a deep coma. Then, kidney failure led to accumulation of fluid in the legs. On the morning of January 10^th, 2004, the last minute came. Li died at the Taipei Tri-service Hospital, at the age of 44.       Xiao Wu’s eyes were red with weeping. “

     Li Jinzhang has always been an iron man. Now he got rusted away. Even though he falls down, we will remember him forever.”     

     Chinese traditional New Year was coming. Li’s body was kept in a freezer. Family members and friends were busy preparing his funeral, while he was lying still, as lonely as he used to be, maybe a little colder. Happiness or sorrow, no one knew what he felt. Everything was gone with him. However, anyone acquainted with him knew that there was also hope in his heart, as well as resentment and bitterness.      

      Li’s funeral was on a winter morning, cold and gray. His elderly parents, some patients and friends gathered to see him off. According to the customs, people burned incense and bowed in turn. They moved in a circle around the coffin, having the last look.

     All tears, Li’s old mom watched the coffin of her son carried into the truck. She beat the coffin with her arm stick, a tradition indicating that he shouldn’t have died ahead of the parents. Slowly, the truck started, out the sight of Li’s old father, who, unable to walk, was standing at the door, tears running down his wrinkled face. He was helped to get into a car.It was still in a time of darkness before the dawn that Li passed away. His whole life was a continuous battle against death. With so much coagulation factor inside his body, Li had gigantic dreams despite the loneliness. He hoped to do most for the AIDS prevention before he fell down. Although the compensation bill hasn’t passed till now, Li has fulfilled the dignity of life by his efforts. Now, the surviving hemo-AIDS victims and their families are still pursuing the law suit in the USA. They are fighting for the late justice.

文：Mars

我是一個先天血友病患者，七十年代末出生在長江邊上的一個小城，當地醫生甚至沒聽說過這種稀少的病，總以爲是白血病或貧血。據母親說，我從六個月起就開始犯病，身上有青紫的血腫，鼻子出血也止不住。去大醫院檢測，確診是血友病，而且是重度的。醫生說我血液裏的凝血成分只有正常人的百分之一不到，所以再小心保護也會常常自發出血，皮膚、關節、內臟甚至顱內。  不忍放棄的父母將我帶回家，從此開始了磨難的人生。自我記事起，聽到父母最多的叮囑就是「不要跑，不能跌，別碰著。」這幾乎成了我家的「家訓」。

多年後，我已經懂得如何保護自己。而五十多歲的母親看到有小孩調皮都仍然心驚，總好像當年看護我的情景。儘管有家人的精心呵護，成長的過程依舊坎坎坷坷。每顆乳牙的脫落都會引起大出血，所以從牙齒開始晃動起，全家就會進入「一級狀態」。父母準備好錢和衛生用品，兩人晚上輪班睡覺，總有一人觀察我的牙齒出血情況，隨時去醫院輸血。每顆牙的更換少則十幾天，多則一個月，全部三十顆牙都是這麽過來的。

到了十來歲，牙換完了。還沒來得及鬆口氣，更嚴重的來了，關節開始出血。劇烈的疼痛讓我晝夜痛哭不止。在父親意外過世後，只留下我和母親相依爲命。現在都不敢回想我每次發病，哭鬧，母親是如何一個人支撐起這個脆弱的家的。她一邊照料我，一邊還要拼命工作掙錢，支付我昂貴的輸血費用。

好不容易渡過發育期，身體開始穩定，出血逐漸減少。突然聽到病友感染愛滋的消息，一檢查，我也未能倖免。也許是從小被病磨的，對生死看的不是那麽重了，難過一陣，也就算了。

自小多病，臥床休息的時候多。空閒時，憑興趣自學了點英語，也沒以爲會有什麽用處。偶爾的機會，結識了台灣的小美。她在台灣多年關注血友病患，對和血友病相關的問題都有細緻的瞭解，並加以著述。她希望由大陸的患者配合翻譯成英文，以增進兩岸之間血友病患者的聯繫。

幾次交流，感覺確是緣分。雖然對自己自學的英語不是很有把握，在小美的不斷鼓勵下，還是接受了這項任務。翻譯過程中，曾經有兩個多月因發病而無法進行，也有過因懶散而數日毫無進展，給原定的出版帶來困難。曾戲稱小美是個很好的朋友，但不是個好老闆。因爲她從來不會催促我的工作進度，只是不斷要我注意休息。

《時間的病》整本書只是講述了一個普通台灣病人李錦章的一生，翻譯者也只是一個普通的大陸病患。但歷史似乎不該全由偉人們構成。記錄下一些普通人的普通生活，只是想讓以後的人們知道，人類發展的過程中，曾經有過的苦難。作者和譯者的本意，也就在於此。