Companionship, Healing, and Shared Growth

I am writing this article not only as a physician but also as a family member of a patient.

My mother's final years were tormented by three diseases: sequelae of cerebral hemorrhage, secondary depression, and advanced gastric cancer. Her secondary depression was never given that diagnosis by any doctor at the time, and I myself knew very little about depression then. Only in recent years, as I have encountered more and more patients with secondary depression in clinical practice, did I realize that my mother had suffered from this disease too.

Most patients who survive a cerebrovascular accident are left with sequelae, but older neurology textbooks generally focus on only three: hemiplegia, speech disturbance, and hemisensory disturbance. My mother's sequela belonged to hemisensory disturbance. This condition is mainly caused by damage to cranial nerves; the site of my mother's first hemorrhage was the thalamus, with a volume of 15 mL. After she was rescued, I gave her meticulous follow-up treatment to prevent hemiplegia and other sequelae that would seriously impair quality of life. But unfortunately she still developed hemisensory disturbance: the right side of her brain was damaged, and the left side of her body felt as though it were being scorched by fire all day long, with symptoms worsening as the weather changed. When we touched her skin, we felt nothing abnormal. I treated her with Chinese medicine and she improved slightly, but not as much as she did from playing cards.

Playing cards was my mother's greatest hobby. In the countryside she always loved playing cards with the village neighbors. When we lived in Beijing, there was an auntie in the neighboring housing complex who was from our own county. Once, when my parents were buying groceries at the market and chatting in our hometown dialect on the way, that auntie overheard them, and the three struck up a conversation. From then on the three became close friends who saw each other every day; the three would gather to play cards, and as she played, my mother forgot her hemisensory disturbance. I am especially grateful to that auntie; because of her companionship, my parents felt far less lonely in Beijing — and of course she was no longer lonely herself either. My mother benefited most: what medicine could not solve, the playing cards helped alleviate.

But when the weather changed drastically, even cards could not solve my mother's problem. She always had a feeling that life was worse than death; smiles were rarely seen on her face — before her illness she had been one of the cheeriest people in our village, and neighbors all loved playing cards and chatting with her. She was born with an antidepressant temperament; no worry could weigh her down. But illness defeated her; she kept sighing and groaning, and many times told me she did not want to be a burden to me anymore. She wanted to kill herself, but felt that if she actually did, people would point at my back and scold me for being unfilial, saying I had not taken good care of her and that was why she killed herself.

My mother and I were extremely close; even at thirty I would still linger on her bed, lying at her feet and chatting with her. Every day I would hold her hand and take her out for a walk once, because I was afraid to let her go out alone — the traffic on the road was dangerous. Once by the river, my mother said to me: Son, let your mother be released. I knelt down in tears and begged her, asking her to let me try one more way. For years we had sought help everywhere, even from doctors in the United States and Japan, but none could solve my mother's problem. We read many articles by "masters" who wrote of treating disease as lightly as reaching into a pocket to take something out; I spared no expense seeking their help, but there was no effect. That is why, now that I myself study medicine and write, I am extremely cautious and unwilling to imitate these exaggerators.

My mother was depressed and often thought of suicide — these are classic symptoms of depression. Once she said to my aunt: My son is so filial; if I were not afraid that killing myself would tarnish his reputation, I would have stopped living long ago. I have thought of dying countless times.

Two days before my mother died she was still out watching others play cards, but unfortunately the day before her death she suffered another cerebrovascular accident. When I arrived home, she had lost consciousness and no longer recognized anyone but me. At her most critical moment, I was the only family member with decisive power over whether she lived or died; I could take her for rescue, or I could let go. My heart ached terribly at that moment. On my way home, my aunt was on the phone crying and asking: Nephew, what should we do? At that moment I was very calm and decided to forgo rescue, because her cancer was already at the terminal stage; only the painful symptoms of the final days had not yet appeared. If she were rescued, the sequelae of a second stroke combined with those of the first, followed soon by the problems of advanced cancer, would only make her suffering worse. So I advocated accepting her passing naturally.

As my mother lay dying, she no longer recognized anyone, but when I came home she recognized me — in this world, I was the person she cared for most. I held her and wept; my mother cried too, knowing she was saying goodbye to me. Sadly she could not utter a word; only in her brief rally did she look at me and call out to my father once.

On Chinese New Year's Eve 2011, my mother had gastric bleeding; after my rescue she weathered the crisis. On the fifth day of the first lunar month, she wanted to return home from Beijing. We had expected her health would collapse once home, but surprisingly she improved a great deal after returning; the day after arriving home she was already able to go out visiting neighbors and watch them play cards. During that period I often stayed in my hometown to care for her, but this put her under great pressure; she felt she had become a heavy burden on me, so she wanted me to leave home and return to work in Beijing. I lingered at home refusing to go; she then became irritable and harsh, driving me away and growing more unhappy whenever she saw me. I had no choice but to spend half my time at home caring for her and half my time back in Beijing working. My mother disliked this arrangement; she wanted only my father to care for her and did not want my career or family to be sacrificed further.

Later I learned from my sister that my father was not as good at caring for my mother as I was; on days when I was away, my mother actually missed me very much. Once, when her medicine was slow to be prepared and dinner was not ready, my mother cried and said: If my son were home, all this would have been ready long ago. I called her every day to ask after her, but she never told me these things; she only told me she was improving, hiding her sorrow from me. When I next returned home, after only a few days she would fly into anger at me and drive me away. Now I know this is medically recognized as pseudo-anger — a manifestation of depressed patients who, lacking a sense of self-worth and feeling they are a burden to their family, want to be less of a load on those they love. It is not that they are truly emotionally cold. The care of loved ones weighs heavily on depressed patients, yet they actually deeply need that care; so they are always in this contradictory state, anxious and struggling, under great pressure.

Secondary depression is not easy to treat, because treating it requires resolving the patient's somatic symptoms, and more than half of diseases cannot be resolved. So the patient is always depressed and pessimistic, feeling the future is bleak; this is not something a few inspirational essays can solve. Endogenous depression is also hard to treat, so many depressed patients, however bright their lives appear to outsiders, are actually unhappy; worldwide about 700,000 people die by suicide each year due to depression.

Many diseases can bring on secondary depression: malignant tumors, stroke, diabetes, and various other refractory chronic and intractable illnesses can all trigger depression. These patients suffer greatly both psychologically and physically, and most live in pessimism and guilt, feeling they are useless and a burden to their families. Some family members with poor psychological resilience and insufficient emotional sensitivity find it hard to understand the suffering of these patients; over time the phenomenon of "no filial son at the bedside of a long-term patient" appears, and the family becomes a new source of suffering, with some even abusing the patient.

Over time, such patients mostly want to be alone, or want to die. Reduced contact with others gradually changes their personality: they become taciturn, expressionless, and unwilling to move; over time they enter a state of numbness. If this progresses further, they are prone to develop Alzheimer's disease. Patients with depression, anxiety, schizophrenia, and refractory chronic diseases are high-risk groups for Alzheimer's.

The reason patients develop this series of problems is mainly that their brain cells have been damaged. Our brain contains 100 billion brain cells (neurons) and another 100 billion glial cells, and some of them are always abnormal. No brain in this world is completely healthy; even the brains of brilliant people like Einstein and Feynman have problems. Einstein handled intimate relationships disastrously; Feynman was depressed for several years. Those of us called mentally normal simply have brain problems not severe enough to affect our lives, so do not casually say someone else is crazy — all of us have something wrong upstairs. Some historical greats launched inhumane movements or wars that caused untold suffering; in reality, as they aged or encountered accidents, their cranial nerves were damaged, leaving them in an abnormal mental state, unable to perceive the world correctly, which led to unspeakable tragedies.

Compared with people who harm others, these people who, after cranial nerve damage, simply become melancholic are far better; and most of them live in guilt and self-reproach, bearing no resentment toward others or society. Some family members may resent the patient for not actively seeking treatment, but in fact medicine can offer them only limited help, at high cost, with significant side effects; so patients would rather endure or end their own lives than go to the hospital. Moreover, doctors in hospitals today are far too busy; every day they face many patients with negative emotions and have mostly become numb to patients' inner pain, unable to provide warm care to such patients.

In the end, what can truly help these patients are the patients themselves and their most important loved ones. Of course, loved ones also suffer greatly; some family members themselves have poor psychological resilience, making caring for the patient even more exhausting — in fact, so-called poor psychological resilience is mostly also caused by poor brain development, and in a sense such family members themselves have psychological disorders and need help from professional counselors.

But family members with strong learning ability and close bonds with the patient can achieve spiritual growth alongside the patient during caregiving. Love requires tolerance, and even more understanding and empathy; all of this must be learned. Although we cannot fully solve the patient's problems, through warm care we can help them greatly. Moreover, in the process of giving love, our own brains develop again: our minds become broader and more mature than before. This requires learning a great deal of professional knowledge; in the process, we discover how narrow our past understanding was.

For a doctor, if he can deeply understand his patients, not only will his professional level improve greatly, but his own spirit will also grow. In treating cancer patients, I have encountered many mood disorders — in patients, in their families, and even in myself. These mood disorders forced me to study and reflect; I wanted to know what I could do to better help patients. In love I am a giving partner; I always find joy and fulfillment in giving love, and receive tender care in return. At work I also prefer to invest more energy and effort in learning broader knowledge, so as to better serve those I help.

Over the past few years I have gained a deep understanding of psychiatry and a comprehensive grasp of the functions of various brain regions. Through study, I can now infer a person's character traits and general behavioral patterns from a facial expression or a few words from patients or their families. Reaching this point is not hard: besides widely reading works on psychiatry and psychology, I also constantly learn things beyond books. For example, when I study a disease, I go to various forums to see how patients with that disease date and get along with their families, learn about their upbringing, and read how family members talk about their struggles in relating to patients. This gives me a very comprehensive understanding of the disease that medical textbooks do not provide. Only when a doctor fully understands how a given patient group approaches love, marriage, and parent-child relationships, and the problems they have with their families, can he be said to truly understand a disease and give patients and families more accurate guidance.

In the process of learning, we also see many interesting things. For instance, many specialized works on treating mental illness are full of recommendations that patients practice diaphragmatic breathing and meditation to relax the nerves — is this not just ancient Chinese sitting meditation and a form of yoga from ancient Indian medicine? Cognitive therapy and exposure therapy are also remarkably similar to the Buddhist Noble Eightfold Path and confession (prabhāṇa). So even sophisticated-sounding treatments have clear counterparts in the cultural heritage our predecessors left us. Over time, we will not become dogmatic scientismists who look down on tradition.