Ding Yuan and Xing Chen, a pair of post-95s girlfriends, fellows from Tangshan.
A handsome guy who loves to laugh out loud, a quirky quirk, and who loves to look at eye-catching, when talking about the troubles of adolescence, Ding Yuan will cry out regret: “Ah, I regret not confessing to the person I like. !” Xing Chen was more active and active: “Of course you have to take the initiative to like it!”
These vivid and moving life plots and character traits are often buried under their unusual appearance. In the eyes of more people, they are disabled girls in wheelchairs.
Xing Chen, patients with osteogenesis imperfecta, are usually called “porcelain dolls” by the outside world, because they are prone to fractures and have no cure, and spend their time in bed before the age of 15; Ding The principle suffers from a rare disease similar to the “porcelain doll”, McCune-Albright syndrome. Although it is also prone to fractures, the condition is slightly milder.
(Xing Chen often lay in bed as a child)
Before the age of 16, Xing Chen’s world was a small bed. “More than 20 years ago, the news in our small place was very blocked. The doctor said that you can’t move because of this disease. Lie down like this.”
In her impression, she spends most of her time playing with herself, “Other children play the wine on the ground, but I am on the bed, this is my bedroom, That’s the restaurant.” Because the TV at home was placed behind the bed, Xing Chen couldn’t watch it, so he held up the mirror with his hands to reflect, and developed the ability to read “mirror words”. Later, she tried to sit up by herself, leaning against the pillow a little bit, and then leaning against the wall. At first, her waist and ribs would be injured if she was not careful. Then she lay down, and she got up again after the injury, and repeated it over and over again.
(When I was a child, Xing Chen used this mirror to reflect and watch TV)
It took her two years to finally see the world like everyone else. Before this day came, she had suffered fractures and fractures more than 80 times all over her body. Except for the head, her upper and lower arms, lower legs, waist, ribs, etc. were almost all injured.
After each trauma, it is not only a physical process of waiting for recovery, but also a mental breakdown and remodeling.
“The cost of a fracture is really high. But, isn’t the cost of lying in bed not big?” Zhou Shuang, the director of the public welfare empowerment project who was later called “spiritual mentor” by Xing Chen, said. she says.
Meanwhile, Ding Yuan, less than 20 kilometers away, is living the campus life of an ordinary student. Occasionally, she would also envy other classmates, hoping that one day she could take a gym class with everyone, go out for a spring outing, go to sing and eat together, and envy those dynamic, more wanton and free youths.
(In 2018, Ding Yuan participated in the Tangshan Marathon)
“My adolescence was quite twisted”, Ding Yuan always felt that he had a more independent and rebellious soul in his bones, “What I say is always contrary to my inner thoughts. .
The secret girl’s thoughts also grow in Xing Chen’s heart. She chats with strangers on the Internet through the screen. When taking selfies, she always only takes pictures of her upper body, pretending to be a healthy person, and going out to play with her family. When the weather is hot, you have to wear a long skirt to cover your deformed legs. At that time, not long after she got into a wheelchair, Xing Chen finally felt the sense of control over her life, but soon she had a new goal – not wanting a wheelchair, Stand up yourself.
“I told the doctor, can you use it as an experiment, treat me as a guinea pig, and just put a knife on me.”
The doctor did not agree, “Girl, you are still young, you will use this money to invest in yourself, and you will understand later.”
(Xing Chen gave a speech when he participated in rare disease activities)
At that time, Xing Chen fell into the denial of his disabled body, and when he learned the result, he was greatly collapsed, “I thought it would be better to die than living like this. On the way back, I still thought about it. If I skip the car, the doctor will definitely be able to operate on me.”
Contradictions, confusion, doubts, and even self-torture, Xing Chen and Ding Yuan’s adolescence pains are more secretive and more intense than others. Unable to face their lives frankly and to reach a reconciliation with themselves, they grew up in uncertainty until they met the Porcelain Doll Rare Disease Care Center.
“I CAN Collaboration Camp” is an empowerment development project jointly organized by Porcelain Doll Rare Disease Care Center and Pain Challenge Foundation. Xing Chen and Ding Yuan’s lives met here for the first time. At the same time, they were surprised to find that there were so many rare disease patients and disabled people in the country who were the same but different from themselves.
There are blind people, people with albinism, people with ALS, people with Spinal Muscular Atrophy (SMA)… each has a “mutilated” and unique part of it. Xing Chen still remembers the teacher’s words when he first entered the camp, “Everyone has their own limitations, the types of limitations may be different, and people’s states are different, but everyone lives with limitations.” strong>
(Ding Yuan and Xing Chen participated in joint camp activities)
This concept shocked and inspired both Xing Chen and Ding Yuan. Before that, Xing Chen was often taught that “because of your disability, you should always remind yourself that you must work harder in order to live the same life as a normal person”; while Ding Yuan once advertised in a way that “the disabled and the strong, Growing up in an environment where life is not easy”, “When you do any little thing in life, others will praise you, wow, you are so inspirational! You are amazing!”
In fact, in the past 20 years of life, they have long been accustomed to other people’s strange eyes and social disputes, but what makes them feel most powerless is the inability to get rid of it from the beginning” Invisible Discrimination”.
“Some people who have just seen me will say, oh, she looks very good-looking, it’s a pity for such a beautiful little girl.”In the eyes of others, the beautiful Xing Chen should be Match the same healthy body.
“You will find that it is difficult for you to be on the same level as others, and if there is any shining point in you, they will feel a pity. The height that those able-bodied people reach, Others will feel from the beginning that we are difficult to achieve.”
(Xing Chen “dances” with other campers)
In the joint camp, they first need to let go of obstacles and re-recognize themselves. In dance class, all students are led by the teacher, from perceiving their own body to further interacting with others , dancing, creativity, and co-rehearsing a show.
At night, they sit together and share unforgettable experiences in their lives with each other; more importantly, they also need to further perceive and strengthen the connection between themselves and the world. The students are divided into several groups. A group will jointly discuss social issues and solutions related to rare diseases and public welfare, and use their own strength to make plans to change and improve the quality of life of patients with rare diseases. During this process, Xing Chen and Ding Yuan began to re-examine their disability status and re-evaluate their self-worth.
After participating in the camp, Ding Yuan decided to try to make some changes.
She recorded the scenes and feelings of those “fighting” for independent living: Once I told my mother to go to the library 5 kilometers away by myself, she disagreed, I kept talking with her Theory, although she was worried, ended up helping me move the wheelchair. On the way there, I was saying sorry to my mother in my heart. I didn’t want to quarrel with her, especially not, but I really needed to try to live independently. Later, when my mother was chatting with others, she said, “Niuniu went to the Nanhu Library by herself”, which was a tone of approval.
Two years later, Ding Yuan had more firsts in his life: the first high-speed rail ride, the first independent travel…
(July 2021, photo of Ding Yuan on the hiking trail)
Xing Chen seems to be taking bigger steps. She defined the day she entered the camp as the day she truly began to be “free”. After the second year of participating in the cooperative camp, she decided to become a “North Drift”. She quietly saved 6,000 yuan, made an appointment to rent a house with other patients, and set foot on the train to Beijing.
“I held a sigh of relief in my heart. Because of my serious illness, my parents never wanted me to go out.” Xing Chen was very impressed. She broke the bone on the third day after arriving in Beijing. The bone strength of OI patients is also very different, and her bones were more fragile at the time. At that time, she wanted to put items that she did not use frequently on the upper level of the wardrobe. When she lifted the sorted items from the ground, the items were so heavy that her leg bones were under great pressure and broke. “That was the first time I needed to face the fracture by myself. I couldn’t help crying, not because of the pain, but because I thought that if my parents knew, I might never come out again.”< /p>
To sort out her emotions, she relented, called her roommate, and said calmly, “I should have broken a bone. Can you help me get some supplies?” , toilet paper, washbasin, and garbage bags were taken to the room. “I said, I will cover your food expenses, but I need you to help me with meals twice a day and take out the garbage once a day.” What embarrassed her most was going to the toilet. , Because she can’t move, she can only solve it by herself in the room, then wrap the urine and urination, wrap it in layers of plastic bags, and ask her roommate to throw it away. “To be honest, it was really embarrassing, but my roommates were very nice, they took care of me all the time, and they didn’t ask for my food after that.”
After two weeks, Xing Chen can move, and can cook some porridge by himself to take care of himself,”After that, I felt like I had won. I think I’m not afraid of anything anymore. “
Once one takes the first step, it seems to herald the hardest part.
In the past few years, Xing Chen and Ding Yuan have traveled through dozens of cities in China with one person, one wheelchair, and one common belief. Be a helper. Xing Chen was also invited to Malaysia to carry out an empowerment project and to give lectures and training to rare disease patients abroad. She used her life experience to tell other companions, No one can choose their “factory way”, but everyone You can decide what kind of “life script” to create.
(During the epidemic, Xing Chen took risks to return from Malaysia)
In 2018, Xing Chen went to the hospital for a re-examination. The doctor told her that the current technology was mature enough to operate on a patient with a more serious condition like her, which meant that she could stand up. .
She came home that day and stood in front of the mirror to re-examine herself. “I’m so ugly and short. I was so eager to have this surgery, I wanted to correct all these parts of my body and be as beautiful as a normal person. But that day, I looked at myself and cried a lot. “
She faintly felt that the self who had been so stubborn and urgent had changed.
“If the operation can ensure more convenience for life, then no one is willing to give up. But one is to take the risk of surgery and damage my body; the other is to recover from the injury. To consume my time and energy, and to pay all these costs and costs in exchange for an opportunity to look better, or to change the way I act, I don’t think it’s worth the surgery.”
After much weighing, she declined the doctor’s offer. The doctor was extremely surprised and asked several times, “Are you sure you want to give up? Don’t you want to live life from a different perspective?” “Yes, this perspective of life does not affect my enjoyment of life,” she replied.
(Photo of Xing Chen and his family)
“I used to hate my body so much, I hated my wheelchair, I hated the obstacles they gave me and the strange eyes they gave me, but it was they that carried me and did it with me A lot of things have made my life so wonderful.” Xing Chen hopes to spend more of his life on social advocacy to encourage and support the personal growth of more companions.
Zhou Shuang can understand her decision better, “When I first met Xing Chen 8 years ago, she was a very reticent girl. At the beginning of the training, she sat in a wheelchair and did not speak. Then I got in touch slowly, and I found that it was her regret that she couldn’t have surgery. Now the opportunity came, but she refused. Because when she found that her life was more open, the limitation of the body was not what she was most concerned about. What she is more concerned about now is how to help some friends fight for their rights when they are refused boarding by the airline; how to let more rare disease patients go out and see the world; how to ask passers-by or help when encountering obstacles Such tools to seek help.”
(Zhou Shuang, project manager of the joint camp)
The wheel of modern medical development is constantly moving forward, which can not only bring good news to patients and improve their quality of life, but also give them more freedom of choice and lead society to respect and the right to embrace the choices others make.
Ding Yuan also shared a daily story about how to look at his disease, “My disease is really rare. When I was diagnosed, it was the fourth case in the country. Between 1 in 1 million and 1 in 100,000. My dad likes to buy lottery tickets very much, but he rarely wins, so I comforted him and said, you see, although you didn’t win 5 million, but give me back Yes. He was stunned for a moment, then said yes, and laughed with me.”
(Photo of Ding Yuan with his father)
A large part of Ding Yuan’s optimism comes from his family. “My family really gave me a lot of strength.”
Ding Yuan doesn’t look like his father, mother, and brother. “My dad joked about whether Niuniu was the wrong child we had, and then he said again, then we won’t change it.”
The crying, awkwardness, and unease that used to hide in the corners are becoming the most solid armor for girls little by little.
They are moving eagerly and aggressively. In the past few years, Ding Yuan and Xing Chen have been traveling together to participate in the annual “Rare China” 10,000-step walk, to popularize the knowledge of rare diseases to passers-by. Ding Yuan remembered that along the way, a doctor was promoted.At the hospital, a doctor said that he had only seen this disease in books and had never seen a real patient. He took a lot of publicity materials, which made them feel the value of their work.
(Photos of Ding Yuan and Xing Chen and their friends when they were walking) i>
In fact, there is a lot of room for improvement in the medical community’s understanding and treatment of rare diseases. According to the “2020 Rare Disease Medical Assistance Project Multi-party Co-payment Practice Report”, there are 6,000-8,000 rare diseases known in the world, but only 5% of rare diseases have effective treatments, and even if there are special drugs, the price It is also very expensive, and it is difficult for ordinary patients to afford it.
However, for Xing Chen and Ding Yuan, although there is no specific drug to cure them, there are a series of medical rehabilitation methods to help them return to social life to the greatest extent. For example, patients with osteogenesis imperfecta can Improve bone density and enhance autonomous mobility through drug therapy and rehabilitation exercises. Xing Chen is a case of good recovery. The “porcelain doll” that was likely to break when moving objects can now walk several kilometers in a wheelchair, and can also hang four or five backpacks in front and back.
In addition to the problem of drug treatment and cost, the two girls also found that the current barrier-free facilities in China are not perfect. When traveling, the most distressing thing for partners is going to the toilet. Occasionally an accessible toilet was found with great difficulty, and it was also unusable due to lack of maintenance.
(Xing Chen and Ding Yuan participated in the rare Chinese 10,000-step walk)
How to create a more friendly environment for patients in both the real world and the spiritual space is a systematic project that requires long-term planning.
At the Rare Disease Cooperation and Exchange Conference in 2021, Li Linkang, executive director of the Rare Disease Alliance, repeatedly emphasized that rare diseases are not only a medical problem, but also a sociological problem, involving prevention, Hospitals, pharmaceutical companies, public welfare organizations, insurance institutions and other social forces should participate in the multiple aspects of diagnosis and treatment, response and protection.
It’s a long way to go, but there are still many people working on it. For more ordinary people, a helping hand when going uphill, a deeper understanding, and an equal and encouraging gaze can make their steps stronger and braver.
*The content of this article is for the popularization of health knowledge and cannot be used as a specific diagnosis and treatment suggestion, nor can it replace the face-to-face consultation of a licensed physician, and is for reference only.
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