Cross-country travel, journey sharing, group fighting...... Recently, in the lecture hall of Xiangtan University Library, a special reading sharing meeting successfully attracted the attention of students. The book was shared by Liu Qida, a rare JFK disease patient with a prevalence of only 1 in 100,000.
Kennedy's disease, medically known as spinobulbar muscular atrophy. Similar to ALS (amyotrophic lateral sclerosis), it causes muscle atrophy throughout the body, eventually developing respiratory failure, and there is no clear and effective treatment worldwide. In this group, few people will break through the limits of their bodies to do something that requires physical strength, let alone have the luxury of having love.
However, in Liu Qida's "rare" life, he challenged himself and met love.
One in 100,000 misfortune befell you
"I love this rare journey, I love this steaming life. Liu Qida's enthusiasm for life is full of attraction - when he shared on stage, his wife Zhu Jiazhi looked at him quietly under the podium, full of relief and happiness.
At Xiangtan University, Liu Qida and Zhu Jiazhi are a couple, although they have passed the love period, they often interlock their fingers. Holding hands is a very frequent move for couples, both over 45 years old. But behind holding hands, there is more of a kind of "protection", without the "protection" of his wife, Liu Qida, who looks no different from ordinary people, is at risk of falling even if he walks on a flat road.
Rare diseases are not born from a young age, and Liu Qida's "rare" life began at the age of 31.
In 2008, Liu Qida's life was "blooming" - at that time, he was the youngest deputy director-level cadre at Xiangtan University, and he had a stable relationship.
Liu Qida didn't have much perception of the changes in his body at first. When he climbed the stairs, he felt that his legs were getting heavier and heavier, and then he had to stop and rest, so he decided to go to the hospital to recuperate.
From orthopedics to rheumatology and immunology, from traditional Chinese medicine to Western medicine, Liu Qida has taken medicine and done physiotherapy, but the weakness of the lower limbs has never improved. In August 2008, he went to a tertiary hospital in Changsha for an inpatient examination, but after a month, he still did not find the cause of the disease, and was misdiagnosed as another rare disease of amyotrophic disease.
More than a decade ago, such experiences were common among people with Kennedy disease.
At that time, there were very few neurologists in China who had "Kennedy disease" in their knowledge system. This JFK disease diagnosis changed the trajectory of Liu's life.
Love is in vain, legs and feet are weak, and mentality collapses...... Afraid of the sympathetic eyes of others, Liu Qida tried his best to disguise himself - he trembled and "lurked" among healthy people: when the unit organized to climb the mountain, he used the excuse that there was something at home; when he met someone when he went up the stairs, he pretended to look at the information on his mobile phone and walked slowly; as soon as he entered the office, he closed the door, for fear that others would see his difficult walking posture......
Fortunately, time is a good medicine. The concern of a good friend made Liu Qida realize that although it was unfortunate to have a rare disease, it was not a shameful thing. So, he decided to come out of his depression and start another "rare" life.
Liu Qida took the initiative to apply for transfer from the party committee office, which was recognized as very promising, and then confessed his illness to the public. Friends and family were shocked, but there was no discrimination. He is very fortunate that he is in a university with a strong humanistic and caring atmosphere, which allows him to start a "rescue" life journey.
In 2012, Liu Qida sent a private letter to the moderator of the "Hunan Brigade" in the off-road e-group of the automobile website, explaining his situation, hoping that the other party could help form a team to drive to Tibet once. He paid attention to off-road before he got sick, but his driver's license and first off-road vehicle were only available after he was diagnosed.
In August of that year, 15 off-road enthusiasts, including Liu Qida, traveled from Hunan to Tibet. He was also interviewed by the local media for the first time as a JFK disease patient.
In 2013, Liu Qida established the Chinese Kennedy Patient Group, which has now expanded to more than 800 members, making it the largest gathering place and spiritual home for Kennedy patients in China, in 2014, he and his patients initiated the establishment of the "Kennedy Rare Disease Care Center", and actively voiced their voices through lectures and public accounts to enhance the public's attention and understanding of rare diseases......
"I no longer care about the length of life, but only about its thickness and temperature, burn it to my heart's content, give it all. This sentence seems to have become Liu Qida's life belief and supported him through a journey.
All encounters are reunions after a long absence
"I thought that such a person would 'burn' out, but I encountered something more 'rare' than suffering from a rare disease - love. In the interview, Liu Qida said this sentence to the reporter of Today's Women's Daily/Fengwang.
Liu Qida and Zhu Jiazhi met in their youth and fell in love when they were not confused. Eight years ago, at a high school reunion, Zhu Jiazhi saw Liu Qida again, and he didn't think that the "man of the hour" in the mouth of teachers and classmates even needed the support of two adult men to travel.
In Zhu Jiazhi's impression, high school alumnus Liu Qida is young, handsome, and promising - although he is in different classes, among his classmates, his name is like thunder, "Chinese teachers often use his compositions in other classes as model texts." Later, she heard the news about Liu Qida from a classmate, that is, he suffered from a rare disease.
In 2016, at the high school alumni reunion, Zhu Jiazhi, who returned from Guangdong, met Liu Qida again, and she warmly invited him to sit next to her. This reunion, they both made a deep impression on each other. After that, despite being separated by two places, they kept in touch. In the old-fashioned "telephone porridge", there are trivial family routines to talk about, as well as life experiences full of insights.
Kennedy disease is more common in men between the ages of 30 and 50, and most of the patients have already started a family before the onset of the disease, and after the illness, the burden of the family is on the shoulders of the wife. In the eyes of others, to be with Liu Qida is undoubtedly "jumping into the fire pit". But love sprouts quietly along the phone line and grows wildly.
Zhu Jiazhi has searched a lot of information and learned a lot about the patient's experience, "The patient's wife not only needs to support the family, but also has to take care of their husband who is in a wheelchair and bedridden in the later stage." Zhu Jiazhi said that these results were expected, and she just wanted to give Liu Qida a happy home.
During a phone call, Zhu Jiazhi confessed to Liu Qida - "I want to be with you!" This sentence made Liu Qida startled, and mentioned his illness again. In order to "scare away" Zhu Jiazhi, Liu Qida pulled her into the patient group, and also talked about her financial situation and a series of financial, care and other pressures she would face in the future. However, Zhu Jiazhi's answer was: "I am willing!"
Kennedy's disease once made Liu Qida ridicule himself and was sentenced to "wifeless imprisonment", so when he suddenly announced that he was going to marry Zhu Jiazhi, a middle school alumnus who was contacted by a class reunion, the people around him either felt that he had been deceived or that he had come to a "self-sacrificed" bride.
On September 6, 2019, Liu Qida and Zhu Jiazhi officially entered the marriage hall.
4 years have passed, and the speculation of "being deceived" has long existed, and Zhu Jiazhi never thought that he entered this marriage because he was noble. She has a direct personality and is not good at expressing emotions, and she used to quarrel with her mother because of a few words. On Liu Jida's side, the family is Xi to caring for each other and naturally showing love, and after a long time, Zhu Jiazhi has also been affected when he gets along with his mother. She heard her brother say several times that her mother felt that she had "softened and gotten better" after getting married.
Take your beloved into Tibet again
"You see, this is a group photo taken by the students in the flower garden I planted, and the students took a group ......photo of us" In the interview, Zhu Jiazhi enthusiastically showed the photo on his mobile phone to the reporter of Today's Women's Daily/Fengwang, which was not taken by Liu Qida, but a photo of the two of them. But one of her most cherished photos is the wedding photo they took in Tibet - in front of the Potala Palace, Zhu Jiazhi leaned on Liu Qida's shoulder, closed his eyes, and both of them had a calm and calm smile on their faces.
Tibet, for Liu Qida, is not only "beyond the mountains and wilderness", but also the checkpoint and symbol of "beyond the middle and wilderness".
For people with Kennedy's disease, a person's journey is romantic and dangerous. "As long as there is a slight emergency in the middle of the process, or even a flat tire, I don't have the strength to deal with it. He even thought that his end should not be to lie in a hospital bed when he is old, but to drive an off-road vehicle and break off a cliff somewhere.
Since entering Tibet in 2012, Liu Qida has wanted to take his wife on another trip - they decided to go to Tibet to take wedding photos.
In 2019, the two who entered the marriage made a bold decision, they chose the Potala Palace and Jokhang Temple as the wedding photo shooting venues. Every few minutes of shooting, Liu Qida needs to sit down and slowly "hold on" to his legs. There was an endless stream of tourists who came to worship, and Zhu Jiazhi held Liu Qida's hand tightly, for fear that he would be knocked down by pedestrians.
After taking a few poses, the photographer suddenly instructed him to kneel down on one leg to offer flowers, and he somehow agreed. Zhu Jiazhi recalled that as soon as Liu Qida's left leg was about to bend, his body couldn't control his balance, and his whole body fell straight towards her. Fortunately, Zhu Jiazhi was prepared, and quickly stretched out his hands and held him up steadily.
In the future, Zhu Jiazhi will be like this, "supporting" Liu Qida's daily life.
Because Liu Qida's leg strength can no longer support him, he can stand up from a chair without armrests independently, wash, dry, store, cook, and repair...... Zhu Jiazhi is responsible for all the big and small things in the family. This woman with a slender skeleton of less than 160cm has gradually trained into a "female man" who can carry seventy or eighty pounds of materials.
In 2022, because of kidney stones and gallstones, Liu Qida was hospitalized three times and underwent two surgeries, during which his abdominal muscles were affected and he almost lost his ability to take care of himself. Turning over, eating, washing, and going to the toilet all rely on Zhu Jiazhi's help, which made Liu Qida inevitably think of the future. But Zhu Jiazhi's love has always sent a strong signal to him: "Don't worry, I will always be with you and take care of you......"
Now, although married, Liu Qida has given up the right to be a father due to a variety of considerations. In the days to come, he plans to accompany Zhu Jiazhi hand in hand, enjoy life, and enjoy the present.
Written | Today's Women's Daily / Fengwang reporter Zhou Yating Xi student Liu Yi
Edit | Ai Mu
Third Instance | Ouyang Lingxi