I recently met a new friend who was weird because he couldn't survive because he couldn't get fresh blood.
He suffers from an almost bizarre illness.
The cells in his blood were fading away, from pale color to whitening. He also had frequent nosebleeds, both nostrils together as if he were turning on a faucet. Not long ago, he was lying in the hospital, bleeding from his nostrils and the corners of his mouth, his gums were swollen from bleeding, and his lower teeth were no longer visible.
This is not leukemia, but a rare blood disease with an incidence of 1 in 10,000.
So in order to survive, he had to go to the hospital for blood transfusions for more than ten years, and sometimes it cost tens of thousands of dollars to be hospitalized.
The disease occurs in only 74 per 1 million people and is more common in children, possibly due to accidental exposure to harmful chemicals or even X-rays.
The only chance he had to get sick was something he left behind after the renovation of his home before he was a year old.
When I was 8 years old, my parents divorced.
I was sentenced to my father, who quickly started a new family and didn't intend to take care of me. Although he didn't say it, I knew he thought I was a burden, a "vampire".
I was 8 years old, the year I was diagnosed.
I had an extremely rare blood disease that required massive blood transfusions every month. Once it is not timely, the body will react greatly, and blood will continue to seep out from the nostrils and corners of the mouth, and in severe cases, it will even be covered with blood spots.
My father didn't want me, and my mother and I depended on each other. The huge medical bills crushed my mother, and the monthly child support money my father threw at me was not enough for me to stay in the hospital once.
The mother also remarried, and a strange man lived in the house, which took away the mother's energy. I felt that I was the superfluous one, for fear that I would be abandoned by my mother at any time.
Ever since I was a child, I've been thinking about the use of living on my own, and if I can't find the answer to this question, maybe I'm really a burden and can't live.
At this moment, I am lying in the hospital for blood transfusion, and in front of me is the familiar ceiling, the familiar blood bag.
I don't know if I'll be able to finish this story.
It all started at the end of 2004.
I was 6 years old at the time, with a high fever that did not go away, and the infusion at the local maternity and children's hospital has not been improved. One day I was seeing an outpatient clinic when I suddenly vomited a mouthful of blood on the doctor's desk, and everyone was shocked.
At that time, the doctor asked my parents to take me to a local tertiary hospital. The test results of the tertiary hospital showed that only the platelets were slightly reduced, and the other values were normal. But to be on the safe side, I was admitted to the hospital until the fever subsided.
After I was discharged from the hospital, my parents took my bone marrow aspirate specimen to the China Blood Disease Hospital in Tianjin.
Since there were no obvious abnormalities in the blood test results and bone marrow aspiration specimens, the doctors in Tianjin advised us to go home and continue to observe.
During my stay at home, my condition worsened little by little, and my fatigue, qi deficiency, dizziness, and palpitations became more and more frequent. It wasn't until I was 8 years old that I was finally diagnosed with aplastic anemia after many bone marrow aspirates and various tests.
It occurs at only 74 per million people and is more common in children, possibly due to accidental exposure to harmful chemicals or even X-rays.
I think back to the only chance I had to get sick was when my home was renovated a year ago, when the air was filled with formaldehyde.
I would tell my closest friends that it was the poor quality of the decoration materials that made me like this.
After suffering from this disease, the bone marrow hematopoietic function fails, resulting in a decrease in red blood cells, white blood cells, platelets, etc.
Blood is called blood because of the presence of these cells, which are now severely diluted and even the walls of blood vessels are affected.
Normal platelets are 125-135, and my index is only 1
This caused me to bleed easily, and I couldn't stop bleeding after bleeding, and I was also susceptible to infections and multiple complications.
I started taking the drug cyclosporine, which can reduce the damage of immune cells to hematopoietic stem cells, but it must be supplemented by other hormonal drugs, so I grew faster.
When I was only 8 years old, I started to develop acne on my face, the Adam's apple grew early, and my voice became thicker. The most obvious is that the body hair grows more and more, and the sweat hair becomes heavier and heavier, four or five centimeters long, as if wearing wool pants and sleeves.
My mom couldn't stand it, so she asked me to stop taking the medicine for a while. Unexpectedly, the consequences were very serious, and I had a high fever again. When I was admitted to the hospital in a coma, it was no longer bright red blood that had been drawn from my body, but some whitish red liquid.
In the hospital, I was only allowed to stay in the senior protection unit, where I couldn't run out of fluids and platelets every day, and it was so quiet that I could only hear the lonely wind of the air conditioner.
But I still had a high fever, and I often had nasal bleeding, even bleeding from both nasal cavities at the same time, staining the sheets red, and I couldn't stop with a whole pack of paper.
The doctor had no choice but to come to the otolaryngology department for help. Those people brutally stuffed the entire nasal cavity with strips of oil gauze, which is the most traditional method of compression to stop bleeding.
I was in excruciating pain, and I couldn't do anything about it when I saw the blood coming out. Both nostrils are stuffed to the brim, like a pig's nose.
I had to breathe through my mouth, gasping for air, and even if I said a word, I would feel a lack of oxygen. The most uncomfortable thing is eating (you can try pinching your nose to eat), every bite of food or water, the suffocating vertigo, the feeling of going to be out of breath in the next second.
A year or two after I was discharged from the hospital, I had a fever basically once or twice a month, and I had to be hospitalized every time. I gradually became a non-stop transfusion of blood plates and various antibiotics.
A bag of blood 200ml costs 400 yuan, and I feel like a bag is shed every time I bleed. For every 10 drops of blood shed, about 1 dollar of blood is lost, and this is done intermittently for several days.
Even the nurse said, "This blood is transfused so that you can have blood flow." ”
The blood and platelets I need every month are a few thousand yuan smaller, 7,000 yuan for a hospitalization, and thousands more yuan for medicine, adding up to tens of thousands of yuan per month.
I'm just in a third-tier town, and even if my family conditions are not bad, I can't afford to spend money like this.
During this period, my mother was also very anxious, and even began to rush to the doctor in a hurry, so that I could take all kinds of home remedies. I've eaten stewed placenta in soup, ground weasel in powder, and all sorts of expensive health supplements.
At that time, I always felt that it was okay to take less regular medicine, and I never resisted my mother asking me to take these, thinking to myself, what my mother said should be right, these are all good things.
Because I didn't take my medicine properly, my physical condition deteriorated rapidly. When I finally couldn't hold it anymore and went to the hospital for rescue, the doctor issued a critical illness notice.
When my father and grandfather heard the news, they were anxious and angry, and scolded my mother, blaming her for not taking good care of me, engaging in feudal superstition, and giving me messy things to make me like this.
The mother was weak by nature, so she could only cry all the time in a hurry, unable to speak.
Seeing this, my father and grandfather scolded even more vigorously and poured all their anger on my mother. There were more and more onlookers, and the father kicked the mother hard.
The mother was still crying, and the doctor and nurse hurriedly separated them, and the corridor was filled with harsh insults and cries.
Later, my mother told me that her leg was very bruised that time, and it took a long time for her to heal.
In fact, for so long, only my mother took care of me, and I don't blame her.
My parents were already at odds and were planning to divorce, and my illness catalyzed the process.
Every day only in the hospital, I see them at the same time, but they meet in addition to arguing and arguing. Because of the constant quarrels between my parents, the regular treatment was always intermittent, so I missed a lot of opportunities, and my health became worse and worse.
I only hate my father, not my mother. She was kind by nature, and she stood in front of me when my father left me. I also know that she was under pressure to raise me alone.
I hated myself even more, and felt like I was a waste, as if to live was to block everyone.
When I got better, I would get a blood transfusion every two weeks to every three months, and my mother would drive me back to school. After class, the teacher pulled me aside and asked me if I was getting better.
However, my activities were very limited, and in order to avoid bleeding from the injury, my mother and teacher repeatedly explained my situation. During recess, other children ran to the playground to play, and I could only watch from afar.
The children always laughed at me, I couldn't run, I couldn't jump, I spoke roughly, and I was covered in hair.
Everyone calls me a monster.
And because of my illness, I kept taking a break from school, repeating grades, and changing classes. Everyone went on to higher education, but I stayed where I was, at the age of 10 in the third grade, and at the age of 11 in the third grade, I became a monster that was passed on by word of mouth in every class and every class, repeating it again and again.
Until some time in junior high school, my cell count was still very low, but it was enough to support my normal life and study, and the number of blood transfusions was maintained once every six months. My mother and I were wondering if this was a sign of getting better.
I had renewed hope for life.
At a school event, the school invited a professional photographer to help take pictures. The crisp sound of the shutter was appealing to me, it was my first time seeing professional photography equipment, and I was always watching out of curiosity. I went out to take pictures with these uncles, fell in love with photography, and learned a lot.
After that, for the first time, I wanted to prove that I was not a monster, but a useful person, so I volunteered to plan various cultural activities at school.
But almost everyone in the school didn't believe it and strongly opposed it.
The teacher was afraid that if something happened to my body, my family would blame the school. He had seen me sick, and I was in class, when suddenly there was a steady stream of nosebleeds, dripping on the table and the floor, and the students around me screamed one by one.
When I got home that day, my mother was picking vegetables, and I told her what I thought and wanted to hear her opinion.
She kept picking vegetables and didn't say anything until I finished saying it a while later, and if you want to go, go for it, and she supports me.
I was so happy that I slipped into the teacher's office whenever I had time and begged him. I grabbed my office camera, adjusted the parameters in my hand, and said something in my mouth.
When the teacher saw me, he thought I knew what I knew at a young age, and I was not convinced, and told him that I just understood, and kept talking about what I had learned from my uncles.
The teacher was skeptical, but finally relented and asked me to give it a try starting with the assistant.
I can show my strengths, and my mind is full of telling myself that I must do a good job, I must do a good job, and after I do a good job, no one will look down on me.
At that year's theatrical performance, there was nothing wrong with my body. I was never afraid to put forward my own ideas and opinions when running with the teacher in charge, and even the teacher in charge said that I had the potential to do this.
When I came home in the evening, I ate at the dinner table and happily told my mother about my day. She listened to me quietly, nodded her head, and then put food in my bowl.
Gradually, I felt that my classmates were no longer so repulsive to me, I could always hear my classmates say that I was very good, and I would hear whispers in the school, "He seems to be the only student director of our art evening."
They don't want to play with me anymore because I'm different from them. Everyone would come and talk to me and ask about the party.
My work photo
On the day of the art show, I ran before and after, watching the party start and end smoothly, watching myself create something from scratch, and a sense of accomplishment arose spontaneously in my heart.
I really proved myself to be a useful person.
After that, I participated in almost all the activities planning at school. I was addicted to such a world, and my busy life made me forget that I was a patient.
During the summer vacation of my third year of junior high school, my mother gave me my first single-lens reflex camera. With the camera, I have met more friends who love photography, and I also have a master.
Considering my physical condition, it is likely that I will not be able to participate in the work like ordinary people in the future, so I can only choose the photography I love among the limited choices.
While others were worried about their studies, I was free to do what others didn't think was a good job. Whenever there was a music festival or a concert, I would pestering Master to take me with a dead face.
When I walked into the scene with the camera and walked through the crowd, I felt unprecedented happiness and satisfaction. No one knows I'm a patient, I'm just an ordinary photographer.
When I was in high school, I pestered Master and brought me into contact with wedding photography. During that time, even my body was extremely competitive, and at the best time, I only had a blood transfusion once every six months, which didn't cause me trouble.
But if you are found to be sick while working, the road will be cut off later, and no one will hire a wedding photographer who will vomit blood.
For the first shoot, I set off from my home at 4 a.m. and went to the bride's home with my team to start the day's shooting with early morning makeup.
I especially like to photograph the moment when the bride enters the hall and slowly walks towards the groom holding her father's hand, because I am also silently looking forward to the day in the future, a girl will come to me like this.
As more and more weddings were photographed, I also began to become a young wedding photographer, with my own income, getting up early and staying up late every day, and being very busy.
Master told me that I can earn about 3,000 yuan by auctioning a wedding in a week, which can offset a small half of the hospitalization expenses. I began to imagine that in the future I would be able to support myself and not have to pin my fate on others.
Until one day, I went out of my house as usual to get ready for the shoot, and suddenly I felt dizzy and it was dark in front of me.
When I opened my eyes again, I was sitting on the floor with my back against the door, my phone dropping on the floor, and the screen kept flashing messages from my companions, asking why I hadn't arrived yet.
I sat on the floor for a few more moments before I had the strength to get up and walk out of the house again.
I had difficulty breathing and was dizzy several times during the shoot. But I couldn't let outsiders see me like this, so I found a nearby stool and sat down, handed the device to my companion, leaned back for a while, closed my eyes and adjusted my breathing.
I can't vomit blood.
I managed to finish the shoot, and when I got home in the evening, there were many small bleeding spots all over my body, my palms were no longer bloody, and it became difficult to breathe. I thought to myself, I must have had another illness.
This is all the bitter fruit of long-term overwork before. Immersed in my work, I didn't realize that such a high intensity made my already fragile body even heavier.
I even forgot for a moment that I was a patient.
The next day, I went to the hospital for a check-up, and sure enough, my physical indicators dropped a lot. I was put back in the hospital and continued to have a blood transfusion.
But there are countless jobs waiting for me to dock, I have a needle in my left hand, and my right hand is still constantly calling and sending WeChat, confirming the work with my teammates.
At around eight o'clock in the evening, the patients in the ward were ready to go to bed, turned off the lights above their heads, and the mother closed the curtain next to the bed to prevent the lights from keeping them from sleeping. I asked my mother to help me put on my Bluetooth headphones and try to keep my voice as low as possible.
I kept typing and paying attention to the flow rate of the blood transfusion, and my mind was in a mess. Sometimes I just put down my phone and close my eyes to rest for a while, and the call comes in again, and I can only continue to communicate with sleepiness.
After I was discharged from the hospital, I returned to work, and within a month, I had symptoms such as dizziness and weakness. When I came to the hospital again, I could hardly believe that my cells had fallen off again, and I had to continue to have blood transfusions to keep me alive.
It was very devastating to me because I used to have to come to the hospital only once every three months or even six months, but now I have to come once a month. After almost fainting that time, before some major events, I deliberately came to the hospital for blood transfusions in advance to prevent myself from having an accident.
Blood transfusions and transfusions need to be accompanied by family members, and my mother is busy with work, so I have to go through all the procedures by myself from the time I am hospitalized. Sometimes I waited for hours for the blood to come back, and my mother hurried to it, and after the transfusion, she hurried back, leaving me alone.
I'm a little distressed. I still haven't lightened my mother's burden. Looking at my mother's figure, I blamed myself for why I didn't get better, why I didn't take care of myself.
I was desperate to find that I was almost a luxury to live on my own.
When I took the college entrance examination, I knew very clearly that I wanted to go to an art university, and I knew that I could be admitted to the school I wanted to go to, but my body couldn't.
When everyone around me is talking about the city, the university, and the major, and imagining my free and easy university life, the first thing I have to think about is to survive.
For the first time, I realized that this disease had taken me down, and that I had to choose between life and ideals.
After filling in the volunteer, I said to my mother lightly, "I stay here, you can rest assured." ”
That night, I lied about hanging out with my classmates, but in fact I drove to the beach alone.
I sat in a remote chair by the sea, trying to avoid the crowds. But I couldn't hide, so I could only hold back my tears to keep myself from crying.
I've been wondering, why did I go through this, what did I do wrong in my previous life that made me suffer like this? I finally carved out a world of my own, but I couldn't control it anymore.
My best youth is dying before it has even begun. Where is my future? No, I don't even know if I have a future.
I hung up on everyone's phone calls, turned down my classmates' invitations to hang out, and turned off my phone after sending a message to my mother to stay with my classmates.
I just want to be alone and quiet until there is no one on the beach before I dare to cry. It was already dark by this time, and I cried so much that I couldn't cry.
The night is deeper, and the sound of the waves crashing on the beach is more pronounced, very empty, and even a little terrifying. The lights on the beach had gone out, and only the faint moonlight shone on the ground, and the sound of the wind and waves was particularly permeable.
I walked across the beach, stepped into the water, and screamed with all my strength at the darkness in the distance, until I cried out that I was so hungry that I almost collapsed in the water.
This damn illness makes me cry unhappily.
I don't know how long it took for me to feel better, and I turned and walked back into the moonlight, and sat back in my chair, my head tilted blankly, not having the strength to do anything.
Before I knew it, I was lying on the chair, and I was in a daze. Maybe I slept for a while, maybe I didn't, and I had in my head every scene that had been in the hospital for so many years.
After a long time, the sky began to lighten. I got up from my chair and sat there to watch the sunrise. Fearing that my mother would be worried, I got up and drove home.
Although I was still sad, I realized that if I wanted to continue living, I couldn't give up on myself. In the past, I relied on my mother for treatment, and in the future, if I want to live better, I have to rely on myself.
I want to make money, and I make money on my own.
On average, I was hospitalized three to four times a month, and in order to improve my immunity, I also needed to give three or four bottles of drugs such as globulin frequently.
Conservative treatment is the most suitable for my condition, I have to transfuse about 1000CC of red blood cells and 6 therapeutic amounts of platelets every month, and the hospitalization fee for blood transfusion alone is more than 10,000 yuan, plus the cost of daily medication, at least 50,000 yuan.
These expensive daily expenses are only built on the basis of no special circumstances, but whenever there is a little surprise, it is a bottomless pit. After so many years of illness, the average annual money spent on treatment will be as high as hundreds of thousands.
Most of this money comes from mothers. When I started making money, I would save myself a sum of money regularly to buy medicine.
I can't remember how my mother endured all this for so many years, but I remember that every time I was hospitalized and sent her a payment message, she always helped me pay the bill at the first time, and there was never a single delay.
But sometimes, when I can't turn over the money in my hand, I can't take out the money to buy medicine for a while, and when the medicine is almost finished, I am always very anxious.
There's no way I'm not going to take medicine, and taking one less pill is deadly. Whenever I encounter such times, I will stay up all night, sitting alone in front of the window, or sitting alone in the car, waiting for the dawn.
I need a lot of money to live forever.
In the summer after the college entrance examination, I began to try to form my own team, register my own company, and earn money for myself.
One day at a party with my friends, and everyone was discussing a comic con, I stood up and said, "I'm going to do a comic con, who's with me?"
Those present look at me, I look at you, and no one answers. Everyone knew that I was not in good health, and they all knew that I was notoriously bad for work, so they pulled me down and said that I was not in a hurry.
I've been avoiding the topic of illness in front of them because too many people feel that I'm a patient who can't do anything.
The dinner was over, and on the way home, my friend asked me if I really wanted to hold a comic convention or if I was angry. I replied to him, "You don't think I'm good too, do you?" I hate it so much that I have been looked down upon since I was a child, no matter how hard I try, why do you look down on me?
Some people say that I am a rich second generation, and some people say that I rely on my master for my work, and I am nothing without them.
The next day, I went to the hospital for a blood transfusion. In order to prevent allergies during blood transfusion, an anti-allergy drug is given. Normally, I would soon fall asleep under the influence of drugs, but this time I held on and used the computer to plan while giving blood transfusions.
On this day, the right hand was pierced, because the blood vessels in the left hand were punctured too much, and there was no place to put the needle. I could only type hard with my left hand, letter by letter.
In order to use the computer, I raised the top part of the bed so that I could sit up and have a space to use the computer. But I was so aggrieved that I couldn't move after I settled on a position.
My mother watched me silently, and she just nodded her head at everything I said, never interfering too much.
In the next few days, I took my plan to talk about the venue and cooperation. Many Party A looked at me with a childish look but was very old-fashioned, and the planning plan was also written in a straightforward manner, and they were also interested in the comic exhibition, waiting for my good news.
After a month of preparation, my comic con went smoothly, and I named it "Monster" because, like me, it was not favored from the beginning.
This month, I have been running from east to west, and I have to go to the hospital at regular times. I once became the beautiful scenery of the ward, coming in a hurry, walking in a hurry, the anti-allergy medicine that usually makes me drowsy, at this time, it has not beaten my strong willpower.
Finally, at the age of 18, I gave myself a different birthday present.
The stage of the Comic Con
The comic con went smoothly, listening to everyone shouting "Mr. Sun" one by one, maybe it was a little weak, maybe it was because I felt respected, and my heart was satisfied.
It was this comic book exhibition that brought me fame and money, and it was the most I made on my own.
More and more people began to ask me for cooperation, and more and more events began to enter my life. I never shirked my job, as if I wanted to prove that I could do it with a vengeance, and I tried my best to do everything well, and it was not uncommon for me to stay up all night.
I don't want people to feel like I'm different from them.
I earned my medical bills entirely on my own, but I only managed to live on this for two years.
In 2018, when I was 20 years old, I suddenly had an acne infection on my face, which was painful and itchy, and there were many large bags bulging, some of which were suppurating and some were bleeding, and I couldn't scratch them, so I could only endure them.
The severe acne infection prevented me from seeing people, so I dropped almost all my work and stayed at home every day. I was afraid to hear people talk about me, and the fear of inferiority swept over me again.
In order to stop the bleeding in my face, I ran to the hospital twice in three days, and kept transfusing blood and plates. My mother didn't know where to get all kinds of home remedies and health supplements, and let me eat them again.
I've tried everything, and there's no sign of getting better. I had to stay at home all day, and once again I had a high fever and I was desperate.
At that time, my three meals a day consisted of all kinds of medicines, in addition to the drugs that controlled my condition, and all kinds of strange things. I set a lot of alarm clocks to remind myself to take medicine, from opening my eyes in the morning to closing my eyes at night, at least a dozen kinds of medicine, taking a pill costs 300 yuan, and I have to take 30,000 yuan a month.
The last thing I want to see is the mirror, because I will see my own face, so I smashed the mirrors in the house.
Under the effect of various hormones and drugs, I began to gain weight rapidly, and the whole person was almost round.
After about half a year of tossing, I finally found the medicine that worked for me, and the bag on my face began to disappear. However, due to the long delay, a large area of indestructible pigmentation spots was formed.
I wear a mask every time I go out, but I can't avoid being asked by people around me, "What's wrong with your face?" I have to face a lot of people every day, and it is especially difficult for me to stand the stares of children. They would even surround me and watch non-stop.
At the same time, my physical condition began to decline rapidly, from being admitted to the hospital every month to every six months, and then to the hospital every week, or even two or three days, and the record of admissions and discharges was as high as 100 times a year.
For so many years, I have been facing the problem of platelet shortage, and when I can't wait for platelets to stop the bleeding, I can only let my gums and nose bleed, and it is useless to use up a large bag of cotton to stop the bleeding overnight, and I can only watch the blood stain everything around me.
Every set of bed sheets in the house has one brown mark after another, which is a blood stain that cannot be washed away.
Later, I went to the China Institute of Hematology in Tianjin, stayed in the hospital for a period of time accompanied by my mother, and also determined the medication plan, which made me better.
After I was discharged from the hospital in Tianjin, I had a different perspective on life, and I no longer proved myself with crazy work like I did in previous years. Now I work moderately, and I can earn most of my medical expenses, and only a small part depends on my mother.
Because I've found something more meaningful than making money. In the patient group, I met a mother and daughter who were exactly the same as when I was a child.
The mother said that while she was taking her child to receive treatment in a regular hospital, she also believed in the treatment of traditional Chinese medicine very much. Due to the long treatment cycle of chronic diseases, the effect of medication is not obvious, and the side effects of the drug are accompanied by increased body hair and early development, which causes the mother to be very worried and once wanted to stop the drug for the child.
This anxious mother reminded me of me as a child, of my mother. I know very well how many detours my mother and I have taken over the years and how much we have suffered.
I told her that she must believe in science and doctors, that she must not stop taking medicine without permission, risk her child's life, and most importantly, learn to accept it.
This incident also made me understand that there are still many patients who need help. That's when I got in touch with a public welfare foundation and became a volunteer.
I am no longer afraid to reveal my identity as a patient in front of people, and I even use videos to film my own story and openly show people that I am a patient.
On March 20, 2021, China Platelet Day, I went to Hangzhou with the Foundation to interview a number of hematologists from all over the country, including my attending doctor at the China Institute of Hematology, as a patient and volunteer.
He was very relieved to see my current situation, I was not defeated by the disease, I was not out of society, and this is what he wanted to see the most.
I didn't expect that after I could face the disease calmly, I would actually usher in love.
That day, I was asked by a friend to go to the set of filming and met the heroine of that scene, a girl who was as sunny as sunny. After adding WeChat, we always chat and eat together, and I can feel the simplicity in her eyes.
At the filming scene, she heard from her friend's words that I didn't seem to be different from others. She was very curious about why someone could be so crazy when they were all like this, it was really eye-opening.
On the day she first argued to accompany me to the hospital for a blood transfusion out of curiosity, I told her everything, from my illness to my family.
I'm no longer afraid to let people know that I'm a patient, as I used to be. She listened to it all as if it were a story, and she still accompanied me to the hospital after listening to it.
That's the day we decided to be together.
She is a very attentive person, and after knowing that I need to take medicine three times a day but I can't remember it, she set three alarms on her phone to remind me to take medicine every day.
During the holidays, she would accompany me to the hospital for blood transfusions when she had time, sometimes from 2 p.m. to 12 p.m. without complaining.
She asked me to write a memo on her phone, saying that she wanted to write everything down to what medicine I took every day and how much, what anti-allergy drugs I used for each transfusion and how much, which drugs I was allergic to and which drugs I tolerated tolerate.
I asked her, I know all this myself, why do I write it down. She said, but I don't know, I'm going to memorize it too, and if one day you need to be resuscitated, I'll show it to the doctor and he'll understand what you need to pay attention to.
Later, this memo became her mobile phone screensaver.
To this day, my health still hasn't improved much, I still need to take medicine on time three times a day, I need to report to the hospital every week, I need to rely on blood transfusions to maintain my life, and I am still running around for expensive medical expenses.
But my girlfriend is like a beam of light, illuminating my dark life, and the days to come will be faced by two people hand in hand.
At the moment, she was sitting next to me, and I said she remembered that she had finished writing this story in the hospital room.
After so many years of life and death, I no longer feel like a useless person. Just like that night at the beach, I learned to face the darkness in order to meet the dawn. For me, being alive is an accomplishment in itself.
When I first communicated with Sun Twenty, he gave me the impression of "madness" - when we talked about money, he opened his mouth and said: What is a million?
But after a long exchange, I still like his madness, because if he didn't have this energy, he didn't dare to defy all the obstacles set up by God, he wouldn't have lived in this way today.
Now he is not only self-reliant, but also gets rid of low self-esteem, shares his own stories, and is calm in front of the people he likes. And the nicknames that had hurt him were now easy for him to utter, and even raise his pitch to imitate those who called him "monster".
I asked him why he was able to do this. He said that he wanted to live better, so he learned to accept it.
His answer reminded me of Romain Rolland's famous saying: There is only one true heroism in the world, and that is to see the truth of life and still love life.
(Some of the characters in the article are pseudonyms)
Editor: Matthew Hai Dongqing