Editor's note : Many readers in the Chinese-speaking world may be familiar with Liu Shaohua. She is a medical anthropologist and the author of "My Liangshan Brothers". She has seen a lot of "horrible things" in her career. She "jumped through the news about the China Airlines crash, went on the Baodiao Ship to interview fishing boats, and in Cambodia, etc." I have done international development in poor countries, caught up in the flames of armed riots in Nepal, went deep into drug and AIDS-stricken areas in the mountainous areas of Sichuan, and visited difficult leprosy villages across China.”
In July 2018, Liu Shaohua’s mother and herself were confirmed to be suffering from leprosy. "The disease of the century", his mother was diagnosed with early stages of Alzheimer's disease, and Liu Shaohua was diagnosed with lymphoma. Five years later, her daughter received active cancer treatment and has improved, while her mother has entered the middle and late stages of the disease. As the memory baggage continues to break through, the mother slowly moves toward relief and relaxation, and has even forgotten about her daughter's cancer. Liu Shaohua said, "The intersection of our lives falling together has passed."
The co-morbidity of mother and daughter caused the whole family to be hit and thrown into chaos. At first, it was difficult for those who were sick, and it was also difficult for those who were not sick; but, after that, In the past few years, "all kinds of life experiences that I had never thought of, including positive, negative, solid, new, wonderful, and creative, all happened one by one; people who are not sick are surprised, and people who are sick are even more surprised." "Liu Shaohua wrote in the book "Sickness Is Not This", "Illness and recovery are both journeys. Only by walking through it can you understand the subtlety of the scenery, whether you like it or not."
"This Is Not This Is" shows her as a cancer patient. , as the daughter of a dementia patient, as a medical anthropologist, and as an observer of society in Taiwan, China during the epidemic. In her narrative of illness and healing, we can see how the patient accepts the body and life. how a family copes with the impact and shock of the disease, how the medical team catches the fallen, and how a society can truly fulfill its duty of care.
Liu Shaohua, a medical anthropologist and author of "The Illness Is Not Such"
Liu Shaohua wrote at the end of the last chapter of the book: "Both my mother and I said goodbye to certain aspects and memories of ourselves. We seemed to have returned to a certain part of our lives. Starting from the original point, we interact with ourselves and others with new moods and attitudes. We have all experienced the subtraction of life due to illness. If we look at it from another perspective, after "losing" and "eliminating the essentials." What remains is what is truly important to us or what we cherish. The path of life moving forward from here may not be a subtraction of life, but a process of re-experience of life after changes in perspective and cognition.”
"Understanding the Patient's Physical and Mental World" (Excerpt) Written by
| Liu Shaohua
Many feelings about a sick or aging body are difficult to express in words, because the patient may be confused by an unknown situation, or it may be difficult to express inner worries. When patients cross the boundary between body and mind, what can they rely on to successfully transcend their current situation and move towards a place of settlement? I think that in addition to good treatment, as well as the patient's own physical and mental exploration and spiritual practice of living in the present, the empathy, care and verbal and behavioral responses of relatives and friends are also important factors in whether the fallen person can be caught and successfully ferried through the crisis. .
While I was dealing with the physical and mental changes caused by the side effects of chemotherapy and the boredom of isolation, my mother was also caught up in the storm of brain degeneration. During the half-year treatment period, the doctor ordered that visits from relatives and friends should be avoided as much as possible to prevent infection. Although my mother often talks to me on the phone, she can only wait for my white blood cell count to recover and my brother to be free before taking her to see me. Although our understanding of the course of our respective illnesses and the time of surrender were different, we also experienced the panic of physical and mental decline. The confused and uncomfortable reactions our relatives and friends have when faced with our changes are also quite similar.
About three months after I received treatment, my mother went from worrying and missing me to only caring about me, to mainly wondering why I didn’t come home. She gradually forgot that I was sick. I accidentally discovered that my mother had forgotten this matter, and I felt extremely relieved, and I never mentioned it in front of her from then on.
I think that forgetting bad things means letting go. However, the mother, who still has a clear logical understanding, may not necessarily think so.
During a chat, my mother mentioned some unpleasant past events that she could not remember clearly. I said, "Wouldn't it be easier if we forget these things? We don't have to think about them anymore."
My mother tilted her head and looked at me: "How could that be? Relaxed?" I asked again: "What does that feel like?"
The mother lowered her head and seemed to be thinking seriously: "I feel very... annoyed, I can't remember, very annoyed." The mother said in an emphatic tone. "twice.
I'm a little surprised. This is a formal word in non-colloquial language. My mother's expression ability is still very precise.
The conversation between my mother and me made me understand that memories that are not completely forgotten are still memories. The situation of broken memory arouses the anxiety and annoyance of self-identity. Even if it is an unpleasant memory, one does not want to lose it. What the mother wants to retrieve is not necessarily the memory itself, but the ability to remember.
Image source: Visual China
My mother often describes her brain fog state clearly and specifically, and she can recognize and express subtle changes. One day, I held my mother's hand for a walk, and she suddenly asked me: "Do you feel that I am swaying when I walk?"
In fact, my mother did not sway when she walked, but that was the true feeling inside her body. In the later stages of treatment, I occasionally felt that my body was very fragile inside, as if I wanted to sit down at any time, but outsiders couldn't see it at all, and might even think it was the patient's fantasy.
That is not an illusion, it is a real feeling. The patient is recognizing the information in the body and trying to stabilize himself.
The sense of illness experienced by the mother is a feeling of losing control and realizing that she is falling. Although the speed is not necessarily very fast, the direction is very clear. I feel the same way.
During the treatment, my sense of illness was also very obvious. In general social perception, chemotherapy is like putting "poison" into the body. Cancer cells are killed, and countless good cells are also killed and sacrificed. Chemotherapy is a necessary evil. My sense of illness is mainly due to the side effects of chemotherapy rather than the damage caused by the disease itself that has been controlled by drugs. Therefore, I believe that I will recover after getting through the difficulties of chemotherapy. However, despite this confidence, I was not immune to falling into low points. As rapid aging approaches and dementia becomes more obvious, how can a mother have confidence and deal with her anxiety?
***
Severe disease, whether it is treatment and recovery, or praying for improvement, is a long journey, full of ups and downs, joy, uneasiness and hope. Often, patients are in the midst of inexplicable and unknown ups and downs. When the physical condition deteriorates, the mood may also plummet very quickly; when the physical condition is slightly better, the mood may suddenly become brighter as if the clouds are clearing and the sun appears. However, others usually understand the pace of the disease and the patient, but rarely can they keep up with it.
It is common that relatives and friends may ask the patient to "be brave", "cheer up", "come on", "be happy", "get better" and "it will be fine" repeatedly when they are confused, overwhelmed or have nothing to say. It seems that the key to appearing "normal" and "happy" lies in subjective consciousness, as if the patient's worries and physical feelings are just unnecessary illusions, as if the patient's fears are avoided, and the real crisis can be suppressed and faded away.
Often, although such words are well-intentioned, they are often caused by misunderstandings and become unintentional harm. They may even make patients feel abandoned and not understood. At this time, if the patient cannot find a way to settle his body and mind, the unfavorable external environment, as well as the words and deeds of others who lack understanding and empathy, may aggravate the patient's sense of falling.
What patients need most is not courage, but the understanding of living in the moment and the virtue of showing weakness. Only by showing weakness to life, to the needs of the body, and to caregivers who are willing to listen and help can we let go of the burden of worry, settle our weak body and mind, and gather all the power and energy of help from the outside world to feel supported instead of deliberately showing strength.
Being willing to receive treatment is just a sign of the courage to survive, and there is no need to make any more declarations.
Picture source: Vision China
After I started treatment, I might occasionally appear to be two different people in the eyes of my relatives and friends. I think that many seriously ill patients or patients with early-stage dementia may make their relatives and friends feel this way.When suffering from a serious illness, the patient's cognition, vision, physical sense, and relationship with the surroundings may be forced to change rapidly, and the patient may intuitively save himself from fear and crisis. Want to find out why? What on earth happened? what to do? Daily choices such as words, deeds, and habits may also be constantly adjusted as a result of these self-questions and answers.
For patients, all these changes that calm their body and mind may happen immediately without hesitation; or they may be groping in a panic, stumbling, and trying again and again, thus appearing to be indecisive. In any case, focusing on the changes in one's own life and life allows the patient's inner adjustment to start quickly. On the surface, he is still the same person, but in fact he may have entered a positive and negative state ready to be reborn. However, other people's understanding and imagination of the patient often remain in place. During
treatment, like the experience of many patients, I would also face the incomprehension of my family. This often reminded me of the day when my mother returned home from chemotherapy thirty-two years ago.
At that time, I was ignorant and immature. I didn’t know how to deal with my sick mother. Although I heard that chemotherapy was very debilitating, I was completely at a loss as to how to take care of my mother after she returned home. I still remember that after my weak mother came in, she didn’t say a word. Instead of going directly to the room to rest as I expected, she insisted on mopping the floor. I asked her to stop mopping, saying that I would do the mopping, but she resolutely ignored it.
For decades, I have always wondered why my mother wiped the floor when she returned home after chemotherapy, but her stubborn and angry look has always been imprinted in my memory. It wasn't until I was in therapy myself that I finally seemed to suddenly understand my mother.
One day when I was hospitalized, a friend came to visit me with a large bouquet of flowers. The doctor saw the flowers and saw my friend gathered around the bed without a mask. He immediately told me to remove the flowers and asked me to put a " "No medical visits" notice. I later heard similar instructions from doctors of other patients. Because most people lack awareness of the situation of patients undergoing chemotherapy, especially those undergoing systemic chemotherapy, they may inadvertently cause unexpected harm.
When chemotherapy drugs are taking effect, the side effects also bring the patient's immunity to the bottom. At this time, ordinary bacteria and viruses may cause the patient to have a fever, thus affecting the progress of treatment and even causing complex complications. Although almost all modern people have relatives and friends who have been diagnosed with cancer and have completed treatment, this common sense is still not widespread.
Before starting chemotherapy, all new patients have to attend health education classes. I watched two films and listened to the explanations. After completion, I had to sign for confirmation, which shows that they are cautious. After each treatment, the doctors and nurses repeatedly warned: Do not touch animals and plants; brush your teeth during meals; disinfect any utensils that come into contact with the mouth with boiling water, especially toothbrushes; avoid raw food and only eat fruits that can be peeled, which can easily carry bacteria and cause Avoid allergy to shrimp, crab, seafood, etc.; be sure to wear a mask when going out and stay away from crowds; try to choose open places with sparsely populated areas when walking.
"Sickness Is Not Such: An Anthropologist's Discourse on the Comorbidity of Mothers and Daughters"
Written by Liu Shaohua
Hope mountain · Guangxi Normal University Press 2024-7
These instructions are good words and hard words. They may seem simple, but they must be implemented seriously every day. For most of the year, it is actually not that easy and requires a certain amount of patience and discipline. I know a patient who found it too troublesome to scald his toothbrush during meals, so he prepared a lot of new toothbrushes and replaced them every two or three days. Still, her tongue was covered in mold and had to be treated. Germs reproduce quickly, and patients with low immunity may not be able to resist even such common germs.
Because of these warnings, after I returned home from the hospital for the first time, in order to try to avoid allergens and keep the environment clean, I moved the green indoor plants to the balcony or gave them away. I also moved the green indoor plants that I had collected for many years but may harbor dust mites. The dolls were sent away and spent six months in a deserted environment. The doctor knew my occupation and told me not to look through books or files that had been dusty for years in libraries or archives, because the dust mites there might put me at "fatal risk" as my immunity is low.
However, although being so cautious did prevent me from having a high fever or unnecessary infection during the treatment, and avoided many small alarms that are common in chemotherapy, and my treatment went smoothly, there was nothing I liked about the stay. The company of plants is not pleasant. This experience made me want to know what kind of plants might be suitable to accompany patients after recovery.
This book excerpt is excerpted from Chapter 2 of "Sickness Is Not This Way". It is published with the authorization of the publisher. The title is self-made by the editor and may not be reproduced without authorization.
