English translation
Dear Amy,
Hello!
When you read this letter, perhaps you have just awakened to some Atlantic morning, the sea splashed by the rising sun into a spread of shattered gold, glittering with the waves; or perhaps you are facing the Atlantic's sky-high billows, tenaciously facing them alone in your lone boat amid the crests and troughs, with only the sound of the wind for company across the vast sky and sea. And on the other side of the earth, many people are quietly watching the direction in which you press forward. As a member of the rare-disease community, I wish you safe passage across a thousand waves, to send out a far-reaching and firm voice to the world on our behalf…
At this moment, I want to write this letter to you on behalf of the community of patients and family members with amyotrophic lateral sclerosis (ALS).
ALS is a rare neurodegenerative disease. Because the nerve cells that control muscle movement progressively die, patients gradually lose the ability to move, speak, swallow, and even breathe on their own; the body seems to be gradually frozen, which is why it is commonly called “frozen person disease” (“jianbing zheng”) in Chinese. Because the cause is unknown, the disease currently lacks effective therapy, and most patients die of respiratory failure within 2 to 5 years. The most cruel part is that the vast majority of patients keep their consciousness and memory clear throughout, meaning we can only watch, helplessly, as our own bodies lose control bit by bit—this “conscious imprisonment” is an extreme torment of body and mind.
The ALS community has long been trapped in three survival dilemmas: first, there is currently no effective treatment plan for the disease, and patients' survival period is generally short; second, as the disease progresses, patients gradually lose the ability to care for themselves, daily life depends on 24-hour care, complications are many, care procedures are complex, and the manpower and energy consumed in caregiving are enormous; third, the expenses for life-sustaining ventilators, eye-tracking devices for communication, rehabilitation equipment, and the like are large, adding to the family's financial burden.
Our greatest wish is to obtain an effective treatment as soon as possible, to restore the ability to live independently, and to have a more complete life.
I became ill in 2009 at the age of 24, and have now lived with ALS for a full 17 years, making me one of the “lucky ones” in this patient community. Now my muscles throughout my body are severely weak and atrophied; my lower limbs have completely lost function and I cannot stand; my arms are too weak to raise; only the middle finger of my right hand retains a faint bit of strength to barely operate a mouse. The strength of my trunk, waist, and abdomen is very poor, making it hard to sit for long, and I lie in bed for more than 18 hours a day. My respiratory muscles have severely declined, and I depend entirely on a ventilator for assistance. I have difficulty swallowing and can only sustain my life by injecting liquid food through a feeding tube. My speech function, impaired by respiratory distress, is also increasingly affected. But even though my body is tightly trapped, I have never stopped fighting. Since 2010, I have persisted in collecting and translating foreign materials on ALS—disease knowledge, research news, progress on new drugs, rehabilitation and care experience, and so on—totaling over 2 million words, which I have organized and posted on patient forums for everyone to study and understand, lighting a little glimmer for fellow travelers and bringing them a trace of hope.
Illness has changed a great deal, but illness cannot define us. In the ALS community, I have seen patients who persist in working despite their illness, patients who write tirelessly using eye-tracking devices, and family members who, through long years of caregiving, have never once given up. Illness has taken away our ability to move, but it can never take away our right to love life, care for our families, and pursue dignity!
In recent years, the development of medicine has also let us see new hope. More and more researchers, medical workers, enterprises, and charitable organizations are investing in ALS research. New treatment targets keep emerging, and new clinical trials continue to advance. Although there is still a long way to go before completely defeating the disease, every bit of progress gives us one more measure of conviction to fight it.
You are carrying out the challenge of crossing the Atlantic alone in a small boat, facing 20-foot waves, endless nights, continuous physical exhaustion, and day-after-day loneliness—just as we face our long years. Much of the time, we cannot decide the direction of the waves, but we can decide whether to keep rowing the oars in our hands. Thank you for being willing to set sail carrying the voice of the rare-disease community! For us, being seen is itself a kind of strength. A rare disease is not a cold medical term, nor a proportion in a set of statistics. Behind every patient there is a real life, a living family, and many dreams not yet realized. You cross the vast ocean with your hands; we cross a frozen life with our courage—this perseverance is, in essence, the same. Though we are in different circumstances, we share the same tenacity that refuses to admit defeat. When the days and nights at sea are hard to bear and body and mind are weary, please remember: every time you row, you are, on behalf of the rare-disease patients trapped by illness, rushing toward the world. However great the wind and waves, we are watching over you from afar.
Finally, I want to say to the ALS community: please do not doubt the value of life because of illness. The meaning of life lies not only in how far one can go or how much one can do, but also in how one faces difficulty, how one loves others and oneself, and how one still keeps dignity and hope in adversity. I also want to say to myself: though the body is frozen, the spirit will never wither; use what limited ability you have to warm fellow travelers; be forever strong, with a heart at peace!
May the near future come when ALS is no longer an unwinnable, drawn-out farewell; may your beloved be settled and healthy, and keep getting better; and may you and I both cross the wind and waves and reach the far shore of our own lives.
With respect,
and my salute!
Cao Wendong, a person with ALS
June 21, 2026, World ALS Day
Enclosed with this letter is an essay I wrote in 2015; I respectfully ask for your comments.
Happiness and Joy
Happiness and joy—we often bring them up in daily life, but if we think carefully, what exactly are they, what characteristics do they have, and how do we obtain them? These questions can easily leave one at a loss. It is just like our sense of time: so familiar that it accompanies us every minute and every second, yet so unfamiliar that it is hard to grasp and hold.
What are happiness and joy? This makes me think of a film starring Fan Wei. In this film, when the protagonist is asked what happiness is, he answers: “When I'm hungry and I see someone holding a meat bun, then he's happier than me; when I'm cold and I see someone wearing a thick cotton coat, he's happier than me; when I need to use the toilet and there's only one squat pit, and you're squatting there, then you're happier than me.”
Comrade Fan Wei's answer is quite down-to-earth and makes people chuckle. Happiness and joy seem to be just this simple, and yet seem not so simple. It can be a philosophical proposition, and it is also closely related to psychology; at the same time it is reflected in economics and behavioral science. It is abstract, yet also concrete; it is intangible, yet also tangible. It is both an existence we can really experience in life, and something that can serve merely as “chicken soup for the soul” spilled from pen onto paper.
In my view, happiness and joy are the spiritual pleasure that people experience in the process of change from “discomfort” to “comfort.”
Starting from this definition, we can extend and appreciate a great deal:
First, happiness and joy arise from comparison.
Just like states that coexist in opposition—beauty and ugliness, good and evil, challenge and opportunity—happiness and joy also need an opposite: a less comfortable opposite, such as hunger, thirst, pain, sorrow, worry, grief, and so on. Only by contrasting with these states can we possibly appreciate happiness and joy. When you are terribly thirsty, even tap water tastes sweet and delicious; the joy of that sweetness comes from the discomfort of thirst. When a mosquito bites a big bump and you scratch a few times, it feels so good; that comfort comes from the misery of the itch. In the era of eating chaff and wild vegetables, wrapping a batch of dumplings for the New Year was so joyful; now we complain that the New Year feels less festive, perhaps precisely because the hunger and cold that once served as contrast are gradually receding.
Of course, “discomfort” and “comfort” are also relative. They can be the truly “uncomfortable” and “comfortable” mentioned above, or they can be “comfortable” versus “more comfortable.” We are already in an age of constantly pursuing greater comfort—changing houses, changing cars, changing to a bigger TV, buying a more fashionable phone—often not because the old things can no longer be used, but because we expect something better. In the contrast between better and good, we feel happiness and joy.
The comparison mentioned above is mainly comparison with one's own state, but in life there is another kind of comparison that cannot be avoided—comparison with others. So-and-so was my classmate, and now their income is such-and-such, their house is so big… Humans are social animals, and comparing ourselves with others is an ineradicable factor in our nature. There is nothing wrong with this; it is even one of the drivers of improving our own conditions of survival. Interestingly, we often say “worse off than some, better off than others.” Comparing upward, what we experience is often envy and jealousy; comparing downward, what we gain is ease and joy. In other words, we may be more willing to compare downward.
One might say that without misfortune there is no happiness, and without pain there is no joy. The reason we must endure misfortune and pain is, to a large extent, because we want to pursue happiness and joy.
Second, happiness and joy are destined to be brief.
Since they exist within the process of change between two states, they are necessarily brief. When we hear a joke, we laugh “ha-ha” and it passes—a few seconds at the short end, a few dozen seconds at the long end; if we laughed for a day and a half, we would get muscle cramps. Why did the Creator not design our happiness and joy to be a bit longer and more lasting? This question probably has no definite answer—or perhaps it is precisely because they are brief that they are precious, and so we cherish and pursue them.
In the final analysis, our life is made up of one matter after another, and among these matters, great and small, the vast majority require us to expend our minds and strength, bear pressure, and possibly suffer failure, pain, and blows. From childhood we study and compete with others, attend all kinds of tutoring classes, take exams big and small; having finally entered university, within a few days we face employment pressure; after starting work we have to buy a house and start a family, and afterward there is our children's education and supporting our parents—and in a flash several decades have passed… Only in the brief gaps between these matters can we experience ease and joy. If life is inherently like this, then we can be at peace with it: since this is a law not shifted by our will, we simply do one thing after another, live day by day, bravely bear the pain, and at the same time cherish the joy.
Third, happiness and joy are highly subjective.
Since they are experienced by an individual, they are highly subjective; the kinds differ, and the degrees vary greatly. For example, Chairman Mao loved to eat spicy food and fermented tofu, and especially loved braised pork, which had to be fatty; he claimed braised pork could nourish the brain, and said he defeated Chiang Kai-shek while eating braised pork. But this dietary habit that brought Chairman Mao joy was sneered at by Jiang Qing as that of a country bumpkin. You find Guo Degang's routines funny, while he himself is keen on the understated style of Ma Zhiming; some people like to read and listen to music quietly and delight in their own company, while others love parties and lively gatherings, roaming amid clinking cups and glasses, giving free rein to their spirits.
A side effect of this subjectivity, or one might say this individuality, is that we can, free from the fetters of material things, culture, and objective environment, pursue the happiness and joy that belong to us. And this, perhaps, is precisely the true meaning of life!
As one of the most “intimate” “companions” of my life, I cannot but say a word about the disease I have. My disease is scientifically named amyotrophic lateral sclerosis, a type of motor neuron disease, abbreviated in English as ALS, commonly known as “frozen person disease.” This disease is one of the five incurable diseases listed by the World Health Organization, alongside cancer, AIDS, leukemia, and rheumatoid disease. Because the motor neurons progressively die, patients gradually lose the ability to initiate and control voluntary movement; the muscles weaken and atrophy, and slowly one cannot move, cannot speak, cannot swallow, and finally cannot breathe—as if the body were being gradually frozen. The disease was discovered in 1874; because the cause is unknown, there is still a lack of a cure or effective treatment. After diagnosis, patients have an average survival of only 2 to 5 years, of whom 20% can exceed 5 years and 10% can exceed 10 years. The incidence of this disease is relatively low, only a few in a hundred thousand. Before the Ice Bucket Challenge that swept the globe last summer, the vast majority of people may have never heard of it, and even many medical workers did not know much about it.
That said, compared with even rarer diseases, ALS does have some degree of recognition, because there are several fairly well-known patients, such as the British theoretical physicist Stephen Hawking and the late American baseball player Lou Gehrig. The former is well known to the public for his popular-science book A Brief History of Time, and the film The Theory of Everything, based on his early life, won the Oscar for Best Actor in the most recent edition; the latter was a legendary figure in the history of American baseball, so much so that ALS in America is generally called Lou Gehrig's disease. In fact, there is another patient who could be called the most famous of all—the aforementioned Chairman Mao who loved braised pork. But in that era, his health was a top secret, so that even now few people know that what he had was ALS.
I became ill in 2009; my progression has been relatively slow, but now I have also completely lost the ability to walk and stand, my upper limbs are severely impaired, I cannot take care of myself, and my breathing is somewhat poor, occasionally needing ventilator support. The fastest-progressing patient I have seen went from onset to death in only 10 months, changing almost daily. There are also some severely ill patients who are completely paralyzed in bed, with only their eyes able to move, needing a ventilator 24 hours a day, their food having to be blended into liquid and then pumped into the stomach through a stoma in the abdomen. I once fell into confusion: in a state like ours, are we really alive? Perhaps there truly exists a third state between life and death. And so comes the question that troubles many patients: amid the torment, why keep living? To wait for a miracle? For family? Or simply because a poor life beats a good death? Perhaps, but these answers are too concrete and have their limitations; a conviction supported by them may well collapse in the face of ever-increasing pain. In the end, I found my own answer: hold fast to life, do the things I can do and want to do, and experience the joy and beauty I can still feel!
Finally, happiness and joy lean more toward the spiritual and psychological level.
An abundance of material life can bring us comfort, but does not necessarily bring happiness and joy—indeed, too much material abundance may even lower our sense of happiness and give rise to the question, “Are you happy?”
In the final analysis, all material and external stimuli must pass through the sensory system to become nerve signals and impulses that enter our brain, and are then reflected as all kinds of feelings. A while ago I watched the film Blind Massage, in which a blind person does not know what beauty is. Come to think of it, it is true—this is a completely abstract concept; without vision, how can one perceive and distinguish beauty from ugliness!
My disease has a characteristic: throughout its course, the patient's sensation, thinking, memory, and other functions are mostly unaffected. This is quite terrifying, because you have to watch, helplessly, as you continually weaken toward death, unable to skip over any bit of pain in the whole process. Many patients are anxious and tormented by this, especially those who, because of illness, have been left by spouse and children, isolated and helpless, and must also suffer the ups and downs of human warmth and coldness. But looking at it from another angle: if one lost thinking, memory, and spirit, and no longer had the ability to perceive love and beauty, could one still be called human? After all, this is precisely the essential difference between humans and ordinary animals.
So how exactly do we obtain happiness and joy? Or rather, how can we obtain more happiness and joy? I think we still have to start from the characteristics of happiness and joy.
First, make good use of comparison.
Since happiness and joy arise from comparison, we should make good use of comparison.
First, again, comparison with ourselves. Of course, we should not deliberately create “discomfort” for the sake of comparison; rather, we should constantly and actively create “more comfort,” which is complementary to a positive and upward attitude toward life. Everyone has a circle that confines them, concrete or abstract; at birth the circle is smallest, and then, actively or passively, intentionally or unintentionally, it gradually expands—learning more knowledge, walking farther, making more friends… In this process, we should try to actively and intentionally set goals and strive for them, avoiding drifting with the current. This attitude can be everlasting, whether the objective environment is superior, terrible, or cruel.
In my university dormitory there was a brother whose father brought him to school, and on leaving said to him: “No matter when, always live in a way that looks the part.” This sentence carried a kind of solemn tragedy, which is why it left a deep impression on me. This roommate's family circumstances were ordinary, and his food, clothing, and daily expenses were plain and simple. He didn't have many clothes, but he paid great attention to matching them; his furnishings were simple, but he was very good at arranging them. Friends who have seen a university dormitory will surely relate deeply: many are as messy and dirty as a pigsty, clothes and shoes piled in utter disorder everywhere, but his bunk was always neat and clean—before sleeping he folded his clothes neatly and placed them at the head of the bed, and after getting up he tidied his bedding flat and smooth, shaving and grooming meticulously, so that his whole demeanor was always fresh and spirited. Later I pondered why his father would say such a thing—perhaps because the family was going through hardship at the time, perhaps because he knew his son was dissatisfied with the school and especially the boarding conditions, or perhaps it was simply a word of instruction to a son about to begin a new life. But in any case, my roommate did it: in an un-superior, even harsh, environment, he always kept himself living the part—he scored the highest in the whole grade on the CET-6 exam, changed majors with high marks to pursue graduate study, and now has a family, a career, and stands on his own. Every year at our small reunions, I can still feel his ever-present vigor and spirit!
The other aspect is comparison with others. When in favorable circumstances, we should compare upward, so that we are not arrogant or overweening; when in adversity, we can compare downward, so that we are not despondent or self-abasing. The former is relatively easy to do; the latter involves the angle from which one views problems. Unlike the self-deceiving anesthesia of the “Ah Q spirit,” it should be based on facts and grasp the essence.
Back when typing was not as difficult as it is now, I spent a lot of time on QQ. The patient friends in the group came from all over the country, differing in culture, station, and experience, and so their attitudes toward problems varied greatly; there were often discussions and even arguments. I remember once, a patient friend said: “If only our disease were contagious like SARS and AIDS, then the state would take it seriously…” Looking back now, this was just his complaint and venting in adversity, but at the time I replied quite bluntly: “If ALS were contagious, the first victims would be our family and friends. Is that what you want?” Such comparisons among patient friends are not uncommon, and in fact they do not grasp the essence of the problem. Admittedly, the contagiousness of SARS and AIDS is indeed a reason the state and even the whole world attach great importance to them, but non-contagious diseases such as cancer and cardiovascular and cerebrovascular diseases also receive much attention. Therefore contagiousness is not the core; the key lies in social influence. To attract attention, one needs to find ways to raise social influence. In the past few years there were often rumors—that AIDS patients, taking revenge on society, put their blood into watermelons or into grilled meat, and so on. Such rumors, though they can form explosive social influence in the short term, result in people's fear, hostility, and further discrimination, falling into a vicious cycle. The ALS patient community should raise social influence in a positive way, showing our cherishing of life and our unyielding spirit in adversity, so that all sectors of society love us, respect us, and sympathize with us—rather than fear us, hate us, and reject us.
When patient friends complain about the pain of the disease, I tell them: for most of the disease's course, we will not have problems with pain, and even when we do, we can mostly bear it—this is better than the churning, tormenting pain of cancer; when we have this disease, our hearts are steady and open, and it will not infect our family—this is better than the possibly head-lowering sense of discrimination and the contagiousness of AIDS; the age of onset of our disease is mostly middle-aged and older, and most patients have a career, a family, and a basically complete life—this is far better off than the children who suffer from spinal muscular atrophy and progressive muscular dystrophy, many of whom do not live to adulthood, so that romance, work, and the like are entirely out of the question.
Making such comparisons can help us face adversity more calmly and better balance our state of mind.
Second, know yourself and understand your own true thoughts.
Since happiness and joy are highly subjective and personal experiences, one must know what one really wants and likes.
When Fang Zhouzi spoke of success, he said he believed success is being able to do what one wants to do while also contributing to society. I think this is very apt. Our education system and social culture often neglect the shaping of a person's individuality. In exchanges with peers, we generally feel confused: we have learned much knowledge but do not know what it is for; not only do we not know what we can do, we are not even clear about what we want to do or what kind of life we want. We muddle through university, step into society with little choice, and then get entangled in daily trivialities, unable to extricate ourselves.
On Youku there is a video program called On the Road (“Lǜxing”), which records a couple's travels and life. In their early years they sold tofu, sold tofu-making machines, and even ran a public toilet; later they joined a jewelry chain and life gradually stabilized. During the 2008 Wenchuan earthquake, they went deep into the disaster area as volunteers, shedding countless drops of sweat and tears in the process of saving lives. The fragility and smallness of life moved them greatly, and so the idea of changing their way of life sprouted. After careful preparation, they gave up their business and comfortable life and began to travel, seeking experiences that could help them understand that life, living, and survival are a challenge. They went to Somalia, which was in a state of anarchy with an AK-47 in every hand; to Chernobyl, a dead-silent place where the danger of nuclear radiation was everywhere; and to Oymyakon, the coldest place; they sailed around the world at sea, proposed at the North Pole, held a wedding at the South Pole, and recently began a westward journey through 80% of the world's war-torn countries… Although the journey was full of hardship and danger, they were doing what they truly wanted to do, experiencing in it their own romance and joy.
Life is short and full of the helplessness of being unable to act as one wishes. We may not be able to be as free and unrestrained as they are, but when conditions permit, we should follow the feeling in our hearts and live for ourselves.
Third, focus on pursuing the richness and elevation of the spiritual world.
Since happiness and joy lean more toward the spiritual and psychological level, in the process of pursuing happiness and joy we need to focus on the stimuli that can more deeply touch our spirit, psychology, and soul, and that require more advanced skill.
In today's highly civilized human society, leisure time is more and more abundant, yet a series of “diseases of civilization” have arisen—for example, violent incidents emerge one after another, drugs are rampant, and chronic mental afflictions such as depression keep increasing. One of the causes of these problems is our fear of emptiness and boredom—people need to be busy, but cannot find suitable stimuli to keep themselves busy.
In Zweig's The Royal Game (“The Chess Story”), such a character is portrayed: when Germany annexed Austria, he was framed and imprisoned in a bare, four-walled room, and amid boundless emptiness and loneliness cultivated a talent for chess by means of a stolen chess manual. But playing against himself for a long time, with no board and no opponent, led to a split of the mind, even to madness. Although this novella is an indictment of the torment and destruction of the human soul by Nazi fascism, the phenomenon it describes has great real-world significance.
When I was a child, a small alley near my home was full of mahjong parlors big and small, the clacking sound endless all day long. In my university days, some classmates ate and slept in internet cafes for weeks or months playing online games, claiming that once they left the cafe they didn't know which way to walk. I used to think they whiled away their time like this out of boredom; only now do I understand that they whiled away their time like this out of fear of boredom. Yet such low-end or repetitive activities easily make people feel dull and further destroy their will, ultimately becoming spiritual opium. Engaging in such activities does not bring happiness and joy, but is merely to avoid pain.
The most enchanting and wholesome activities are often those that require the highest skill and patience, such as scientific research, literature and art, and skill-based sports. Yang Zhenning once mentioned that Dirac's papers give people the feeling of “autumn-water prose untainted by dust”—no idle words at all, going straight to the essence, straight to the mysteries of the universe. We ordinary people probably find it hard to understand Dirac's work, and so cannot feel the joy Yang Zhenning experienced, but that beautiful feeling must be very advanced, very lucid, and very enchanting. Emulating the worthy is a quality built into our genes, and setting one's sights high is but a single thought away!
Fourth, help others obtain happiness and joy.
There is a certain degree of self-interest in human nature, but at the same time a considerable proportion of altruism. Facing the weak, we can't help but feel sympathy; seeing others suffer, we feel we cannot bear it. In the face of disaster, examples of sacrificing oneself to save others are common. Those who help others expend their minds and strength, dig into their own pockets, and even risk their lives, to save strangers they have never met and will very likely never see again. In everyday life, too, we often contribute our time, energy, and money knowing full well there will be no return—such as donating money, giving blood, volunteering, giving directions to strangers, and so on.
These acts of goodwill seem to run counter to the fabled selfishness of human nature, but they undoubtedly make the community we live in warmer. Social exchange theory offers an explanation for altruism: helping others can in fact bring rewards. Rewards fall into two types, external rewards and internal rewards. Those who help others can win people's praise and raise their social prestige; if they help blood relatives, they can also increase the chances of their own genes being passed on… these are all external rewards. Internal rewards are equally important. When we do a good deed, we often feel we are more worthwhile. When we bring others a good mood, our own emotions rise along with it. Helping others can bring joy to oneself, hence the saying “joy in helping others”; and when we are in a good mood, we are especially willing to relieve others' worries and difficulties, which is the so-called “delight in helping others.”
The pursuit of happiness and joy is a fundamental driving force of life, and also one of the natural rights and meanings the Creator has bestowed on life. I wish all my friends, no matter what circumstances they find themselves in, the ability to experience happiness and joy!