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.
[Being acquainted with each other]
Zi Ling’er and I rented an apartment in a suburb of Shanghai. We visited the doctor and took medicine every Saturday. Zi Ling’er is outgoing and made some friends. I got to know many friends through her. Wu Ji, my boyfriend, is one of them.
Wu Ji is introverted and shy. Most of his thoughts are passive and melancholy. He was diagnosed with heart disease shortly after he was born. We chatted with each other on the internet every day. Day by day, I got to know him. He likes rock and roll music. He also likes watching movies. He was in a band and played drums when he was in university. He can play the guitar. He said his mother had been taking care of him for the past 20 years. He does not have any regrets except that he has never been in love. He said he would like to experience being loved or loving someone when he is alive. Due to his health problems, girls would not love him.
Days passed and we kept chatting everything via the internet. One day, he told his mother he would go out and visit Zhouzhuang. He would drop by the Chinese medicine doctor and see me. We agreed it was a blind date.
When we met, we liked each other. Though he is reserved and shy, he held my hand. I was thinking: this is what love between two patients looks like. He is in Beijing and I am in Hubei. We are in poor health and we might see each other once a year. Our means of contact is on internet or phone. He asked me if I could accept long-distance love. I thought if we have computer, telephone or video, we will be OK. We do not have to see each other all the time.
We told our parents about our love, and they have no objection. We are in love.
After he stayed in Shanghai for a week, he went back to Beijing. His mother had allowed him to stay for 3 days. On the train back to Beijing, he sent a text to me and said he was reluctant to leave. He was thankful that I let him know what it felt like to love another person. He would come to Shanghai again and see me.
It is cold in November in Shanghai. I could not manage going between the suburbs and downtown for the treatment once a week. I had to go back but I knew there was no heat in Hubei. He hoped I could spend winter in Beijing. When we chatted, he would tell me how comfortable it was to stay in the house during winter time in Beijing. He said he would take me to eat something tasty and we could go places for fun. Furthermore, he would like to take Chinese medicine. If I was in Beijing, we could take medicine together. He said he would pay for my traveling expenses. I thought he was adorable, just like a big boy.
I called my parents for their opinion. They agreed and respected my intention. His parents agreed to accept me to live with them and seek Chinese medical treatment. I really appreciate my parents. Thanks to them, we spent a short but happy time together.
【Fall in Love】
On November 6, 2009, I took a train to Beijing. He and his mother picked me up at the train station. He became happy and his parents liked me. Our life finally felt carefree. But for how long would it last for?
On December 8, he was not feeling well and his mother took him to the hospital for a check. He did not realize anything was wrong when they went to the hospital. Unexpectedly, the result was not optimistic. The doctor said his kidney was faiing, which was the main reason why he was feeling worse. The doctor suggested getting a new kidney, the alternative being staying alive for only one or two more years
He was crying when he heard the news. He said it was unfair. He accepted the heart disease, but he could not accept the fact that he would leave the world when he had just fallen in love. The hit was hard.
He was in despair and sent a text to me. He asked me to go back home before we were deeper in love. I could sense his desperation. I repliedto him that I would not leave him and would stay with him instead no matter how long he would live. I would like to be with him and face everything that life gives us. He was feeling better when he received my text and showed his mother what I had said. His mother decided to talk with me about it openly.
His mother talked with me a lot the day when they came back from the hospital. She told me in detail about his situation and asked me to think carefully. His mother hoped I would fully understand the current physical situation of her son and make the decision after full consideration. I told her that I understood and would think everything through carefully before making the decision.
After the talk, he was discharged from the hospital. Except for his mother and me, no other family members knew about his situation. When he came back home, he was still optimistic, though his kidney problems gave him some depression.
He liked to tell me about his childhood and how he performed in high school. He told me he liked learning science. He even suggested that he would teach me science courses when I mentioned I was not good at learning science. His mother and I felt upset and sorry about his worsening situation.
During Christmas time he started to prepare forthe holiday with me. He asked his mother to prepared Christmas gifts and asked her to help him buy gifts for me. He bought red wine, cakes and snacks. He also asked his mother to make a reservation in a restaurant for Christmas. In the evening, we two enjoyed red wine, cake and snacks.I spent the first Christmas of my life with him. He was happy and said this was the first time he spent Christmas with his girlfriend.
On New Year day, his parents took us out. We had snacks and hot pot, then we went to many places. His mother bought a pair of new shoes for me as new years gift. We had planned to eat roast duck, but it became too late. We postponed it for the next time when we would go out. He was not happy. His mother teased him since he did not like roast duck, we did not have to go. I knew he just wanted me to have roast duck because I had never tasted it before.
I got to know later he had written down on a notebook restaurants that he would like take me to eat. He would tick one when we had gone there. But because our time together was so short h had only ticked 4 restaurants off the notebook.
After New Year, his situation got worse. Every day was a torture for his mother and me. He kept thinking where to take me to play and eat. He was happy that he finally could go and see a movie with me. He had used to go to movies himself. He said he still remembered the sense of loneliness when he had Mcdonalds alone near the movie-theater. Now he said he was no longer lonely because he was with me.
He wanted me to meet his friends and eat together. He also tried to find a pair of rings from an internet shop. He said he would buy a pair of rings and engrave our names on them and give it to me as a Valentine's gift. He said he would take me to visit the Bird’s Nest and Water Cube when it became warmer.
He had so many plans, but things do not always go as planned. On January 29, 2010, his illness became worse and he passed away. All things he had planned were not able to be fulfilled.
I said I would like to buy the pair of rings we had planned to buy. His mother agreed. I bought the rings and put one on his finger and one on my own. It was the one thing that he had not had time to do. I did it for him.
I don't remember how I lived through that period. One thing I knew was I could not lie down and make trouble for his mother. She had to endure the sadness of the loss of her only son and still had to make arrangements for the funeral.
My parents wanted to take me home, because they were afraid I would collapse due to sadness. I said I would like to stay several more days and would accompany him for a little bit longer.
During this period, his mother and I comforted and encouraged each other. We were weeping together and recalled details of him. We talked of some happy times. We believed we had just lost his physical body, his soul was with us. We thought we did not have anything to regret. He had experienced true love and his mother loved him so much. And in his last days, I was with him and he was happy. I said I’d rather he left us without being tortured by the disease. He did not have to bear desperation and fear. We comforted each other like this.
Several days later, my parents came to Beijing and planned to take me home. His mother took us to visit the Bird’s Nest and Water Cube. His mother invited us to eat roast duck, but we declined. She understood. She wanted to fulfill the plan that his son had not had time to complete.
When I got home, I asked his parents to keep the ash from his bones at the funeral parlor so when I die, they can put my ashes with his and scatter them to the sea. I had to go back to my home and accompany my parents before I am able to accompany him to heaven. I believe he will be waiting for me.
The second day I went home, I was sent to the hospital in an ambulance. The doctor said I had developed an acute myocardial infarction. My younger sister said I was too sad.
For several years, I kept in contact with his mother by the internet, text or telephone calls. His mother said she would love me as much as her son. She gave me 500RMB as pocket money every month. She would send me clothes, snacks and more money during holidays. She transferred her love to me.
Experiencing death several times, I became calm and peaceful. I am thankful. I believe that every day I still get to live I can provide meaning to the world.
Original article written by A Bu, translated by Maggie Li, edited by Yanyan Zhang
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