Jimu News reporter Zhan Yu
"It's not that you insist on seeing hope, but that you can see hope when you persevere. On November 19, in Li Zhuojun's last WeChat tweet, he responded to netizens' comments with such a sentence, "Cai Lei's medication is effective, you must stick to it".
"ALS patients", "volunteer volunteers" and "Douyin Internet celebrities" are the labels of Li Zhuojun before his death. Suffering from ALS for 32 years, he used to be a volunteer, using a wheelchair to participate in volunteer activities, in order to survive, he opened a Taobao store to support the whole family, when his health deteriorated and he could not get out of bed, he could only use three fingers to operate the mouse to shoot, edit and publish videos of his optimistic life, start live broadcasts, fight against incurable diseases, and inspire others. In the past three years, 815 short videos of the Douyin account "Strong Zhuojun" have allowed him to accumulate 170,000 followers.
When he was 8 years old, some doctors asserted that he would not live to be 20 years old.
On November 26, Li Zhuojun's family released an obituary, saying that he died in the early morning of the 24th after failing to rescue him in the hospital due to illness, at this time, he had just passed his 40th birthday.
Group photo of Li Zhuojun's family of three (source: Internet)
Li Zhuojun is a native of Linhai, Zhejiang, on the afternoon of the 27th, Jin Zhihua, vice president of the Linhai Charity Federation, recalled to the Jimu News reporter that he met Li Zhuojun in an online fundraising activity in 2006, at that time, Li Zhuojun was unable to walk because of ALS and participated in the event in a wheelchair. After that event, Li Zhuojun applied to join the Linhai Volunteer Organization.
"His QQ network name is Yuyi Mingming, so we all call him Mingming. Jin Zhihua said that Li Zhuojun is a veteran of the volunteer branch of the Linhai Charity Federation, and when he joined the association, the volunteer organization was established less than a year ago, and there were only about 100 members. After joining the association, Li Zhuojun has been participating in volunteer activities until his condition deteriorated and he could not get out of bed, and he still wrote small articles for each volunteer activity in the QQ group to do his public welfare. Today, more than 10 years later, the number of volunteers in the volunteer branch has exceeded 7,000.
"We admire him very much, and we go to see him every year on the Day of Helping the Disabled, as well as during the New Year's holidays. Jin Zhihua introduced that Li Zhuojun's family conditions are not good, his parents sell vegetables in the vegetable market, and the two take turns to take care of him at home. Sometimes the vegetables that can't be sold at home are sent to the volunteer group, and everyone immediately helps him sell them out.
At home, Li Zhuojun, who is lying on the bed, only uses three fingers to operate the mouse and touch the outside world. In Jin Zhihua's impression, Li Zhuojun's condition was relatively stable a few days ago, but he didn't expect to receive the news of his death on the morning of the 24th, "It's very sudden." Jin Zhihua said that he would attend the farewell ceremony on December 3 to bid farewell to Ming Ming.
In the 815 videos on Li Zhuojun's Douyin account, it shows how his mother wipes his body, washes his hair, feeds him, intubates, massages, works in the field, and there are some videos with goods. In the video, Li Zhuojun is optimistic and positive, and netizens continue to cheer him on in the comment area.
In addition to editing videos, Li Zhuojun is better at expressing his thoughts in words, in his WeChat public account "Xiao Ming who lives in the moment", whether it is prose, poetry, memoirs, or essays, Li Zhuojun's text logic is clear, and every word and sentence reveals the desire to live.
In October this year, when his 40th birthday was approaching, Li Zhuojun pushed 4 articles about his 40-year experience of fighting ALS.
The following is an excerpt from his article
The doctor said I wouldn't live to be 20 years old
When I was 8 years old, in a hospital in Shanghai, I heard the doctor tell my father and uncle that I would not live to be 20 years old.
In those years, I saw Chinese medicine, drank Chinese medicine, did acupuncture, and did blind massage... I have even seen superstitious fortune-telling. Later, when I went to Shijiazhuang to see a doctor, the hospital was full of patients from all over the country, and I was the least ill at that time, and I was able to climb to the highest floor (7th floor) in the hospital in one go. After a period of treatment, none of us had any effect and went home.
Li Zhuojun was treated in other places when he was a child (Source: Internet)
When I was in the sixth grade, I could barely walk a few steps, and my mother had to get up early to go to the vegetable market, so she dropped me off at school early, and I sat alone at the school gate waiting for the door to open. There was a tall classmate who carried me into the classroom every morning, and sometimes my parents picked me up late in the afternoon, and he carried me to my aunt's house, which touched me very much, and I have never forgotten it.
Dropping out of school at home is in the first semester of the second year of junior high school, which should be 12 years old. From the age of 7-8 to the last time I saw a doctor at the age of 19, most of the money my parents had earned over the years was spent on my medical treatment, and I was often ridiculed by my parents as "the son of money".
I started my business with my patients
IN 2001, I HAD MY FIRST COMPUTER AND CONNECTED TO THE INTERNET, WHICH OPENED THE DOOR TO A NEW WORLD, ALLOWING ME TO SWIM THE INTERNET, ACQUIRE KNOWLEDGE, AND TEACH MYSELF WEB DESIGN, FLASH ANIMATION PRODUCTION, ETC.
At the end of 2004, I searched the Internet for information on myopathy, which led me to find the organization. A forum for progressive muscular dystrophy that brings together patients from all over the country. At that time, the forum was conducted through the UC voice chat room, which included English, web design, and FLASH animation production, which made me feel like I was back in the classroom, and in today's words, "online classes".
Li Zhuojun and his computer (Source: Internet)
At the beginning of that year, I met a few patients who did Taobao, and under their influence, I also started Taobao business, because I wanted to reduce the burden on my parents by myself, and the first money I earned from Taobao, I bought a pair of leather shoes for my mother, a belt for my father, and a radio for my grandparents.
On October 1, 2005, my mother accompanied me to attend the Hangzhou Patient Gathering, and when my mother saw a little patient fairy with very serious spinal deformation almost lying in a wheelchair, but always infecting every patient's family with a smile, my mother was truly relieved. Later, my mother told me that when she learned that I couldn't be cured, she always washed her face with tears every day, and now she wants to open it, crying and laughing every day, it is better to live happily all day.
Twenty-six patients I knew left
In 2006, I came to the Linhai Forum, and the word Linhai Volunteer caught my eye for the first time, which was the registration post for the Disability Day held in May, I signed up and participated, and on that day I joined the Linhai Volunteer and became a volunteer.
At that time, the idea was very simple, to use the computer knowledge I learned to do something meaningful, and I also hoped that I would participate in the public welfare in a wheelchair, so as to arouse more people to join the public welfare, and at the same time, I also hoped that more people would understand the myopathy community.
Li Zhuojun participated in the event (Source: Internet)
I used to manage the volunteer section for a period of time, wrote feedback on activities, and was moved by their insistence on public welfare, so I made an e-magazine with several patients, and in 2009, I began to maintain the volunteer management system, responsible for volunteer information entry and activity statistics, etc., until 2016, when I handed it over to other volunteers after the gas cut.
In 2012, my condition deteriorated to the point that I needed a tracheotomy, and I insisted on being discharged from the hospital without having a tracheotomy.
From 2005 to the present, 26 patients I know have passed away one after another, all of them are fresh and young. Most of them are in their 20s, the youngest is 16 years old, and their lives have not had time to bloom but have gradually withered, and the white-haired people send the black-haired people.
Later, I also figured out that this may be a relief for them, I don't feel that they are gone, they just exist in another way, in fact, life is a process of life towards death, sooner or later.
Perseverance is the only way to see hope
In 2016, my condition deteriorated further, I had a tracheotomy, aphasia and disability, and was maintained on a ventilator, and I had to suction at any time, and I couldn't do without someone to take care of me 24 hours a day. I was hospitalized for more than a year, and in the face of high medical and nursing expenses, my illiterate mother learned to use a ventilator, sputum suction, and air incision care, and went home to care for me.
After more than half a year of application after I was discharged from the hospital, I also stabilized, I removed the nasogastric tube, resumed eating through the mouth, and was able to speak again with the help of ventilator airflow.
In the past few years, my mother's dried vegetables and bayberry on the market, I helped her sell them through the circle of friends, volunteers and volunteers have helped me forward, and I have received the purchase support of many friends (including volunteers and volunteers) and caring people.
Li Zhuojun lying on the hospital bed (Source: Internet)
Some doctors said that I have now lived to 40 years old, which is much more than expected, and it may be related to my slightly mild condition, but more because of the care and efforts of my family.
Recently, some netizens left me a message, saying that Cai Lei's first medication had an effect, so I must persevere, thank you for your encouragement. I have suffered from rare diseases for more than 30 years, and it is not because of medicine that I have seen hope that I have persevered, in other words, it is not that I have persevered when I see hope, but that I have persevered to see hope.
My parents have taken care of me for decades, and my mother has given me extraordinary energy and physical strength to care for me in the past seven years, giving me a strong backing and the courage to persevere. In fact, we are not fighting alone, and we must persevere with or without the emergence of drugs.
(Source: Jimu News)
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