“We need to see both sides of life. If there is only emphasis on the good side, that is self-deceit. It is necessary to be aware of the bad side, but we need to keep hope in the worst times.” Liu Xia sees poetry as an alternative reality she can visit. “There all is very beautiful, very quiet, very nice.” She says in one of her lines: “This blade of grass dreams big, or it wouldn’t have so painstakingly grown since it knew it was only grass.”
Liu Xia
A Chinese writer born with spinal muscular atrophy in Jinzhou Town, Shijiazhuang City, Hebei Province in 1985. Over the years she has had more than 300,000 words published in major Chinese literary periodicals, plus two anthologies of poetry and prose respectively entitled “The Time of Long Grass” and “Meeting Life”. Now she is a member of the Poetry Institute of China and the Writers’ Association of Hebei. She has been awarded several honorary titles, including “Top Ten Model Citizens with Disabilities in Shijiazhuang” and “Model of Cultural Excellence of Shijiazhuang”.
Since last winter Liu Xia has been living with her family in a rented apartment in the city, where the central heating system provides warmth and comfort. At night, she and her elder sister Liu Ning retreat to their bedroom to work at the computer. Illuminated by the monitor, Xia speaks into a microphone and the speech recognition software turns her speech into words. With great difficulty Ning uses the touchpad to correct the errors. Wind blows in from the window. When can I go back to my hometown for a visit, Xia now wonders. It looks as if the monitor light could shine on a distant past.
It was when Xia was still able to draw and doodle. Back then she lived in a house made of clay, a thud of light gray bricks lining along the exterior wall. Her grandfather built it when her father was three years old. She was the last baby this humble abode had seen.
When summer came, Xia would have little poem reciting competitions with her sister under a persimmon tree on the east side of the courtyard. In winter, when they could easily get sick and suffer persistent coughs, they would spend time reading and doing homework inside the house, with a wooden board tucked in between two pillows to be their makeshift desk.
At the northeast corner of the house stood a cupboard half a man tall, painted with a panda eating bamboo. Inside there was a black leather case containing medical records from many hospitals in Beijing.
Without ever leaving the old premises, Xia grew up reciting ancient classical poetry and reading modern prose thanks to a steady supply of newspapers, poetry magazines, and books her father bought. Little did she know how these writings would light up her life in the future.
Writing is an inevitability
The sisters, Xia and Ning, both were diagnosed with congenital spinal muscular atrophy about one year after they were born.
By the time they reached the school age, no school accepted them. Their parents had to buy the textbooks and teach them at home. “We always thought that one day we could go to school.” Back in those days when they were still able to hold pens, they learned faster than their peers in school. When they reached adolescence, what would normally have been growth spurs became illness spells. The more they fell ill, the weaker their bodies would be. This went on until they could no longer sit upright on their own.
Those teary red eyes of the loved ones, Xia confronted so many times that she was able to hold her tears back, despite the emotional pangs she suffered. Colds, persistent high fevers, shallow breaths…a predetermined fate of pains and sufferings had fallen upon the sisters. “My sister and I were like furniture in the house. Our wheelchairs were placed precisely along the west wall so that we would not be in the way while it was easier for us to see people walking in.”
At 14 Xia came upon a new world – the poetry magazines to which her father subscribed. She weaned herself off children’s literature and began to read a broad spectrum of literary works, from old-style poetry to modern prose writings to lyrics to novels. She had a bookcase full of Friedrich Nietzsche, Wang Guozhen, Socrates, Rogers…. On good days she would read for seven or eight hours on end and would love to share her ideas with her sister. Sometimes both of them found it hard to fall asleep at night when they had exciting discussions.
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“I must speak out with faith and fortitude everything that I see; whether it’s weal or woe, mission or not, it’s an inevitability.” Xia wrote in her essay “Monologue”. Having been through all this, Ning believes that every essay and poem her younger sister has crafted is what she wanted to say herself. Xia is adept at turning her feelings into words. Writing is her destiny.
Gradually Xia began to develop her own style. Her disabilities opened up her mind and provided an outlet through which she writes about the world and humanity.
In 2013, Xia got a cold again, which quickly escalated to pneumonia, leaving her in dire conditions. When she was rushed to the hospital, the doctor suggested tracheotomy to help her breathe, but he warned, “If we cut your wind pipe, you may not be able to breathe on your own given your conditions. Then we’ll need to put you on a ventilator in the I.C.U. Otherwise your life may be at risk.”
In no time Xia sensed despair from her parents, knowing that “they could no longer make decisions and had no one but me to rely on.”
For one minute, Xia imagined herself being sent to an I.C.U. by a group of people, tubes sticking out of her body from a machine. She wondered if life was worth living in that way. “No,” came her decision right after the moment. “My faith at that time was that there would be greater hope if I held myself together longer.”
“We need to see both sides of life. If there is only emphasis on the good side, that is self-deceit. It is necessary to be aware of the bad side, but we need to keep hope in the worst times.” Xia sees poetry as an alternative reality she can visit. “There all is very beautiful, very quiet, very nice.” She says in one of her lines: “This blade of grass dreams big, or it wouldn’t have so painstakingly grown since it knew it was only grass.” She continued to write, “A fallen leaf on the street is swirling with the wind and is shaking even though it has a transient attachment. Unable to fly high, this leaf looks so light and little. Yet, when it traverses through the rays of sunset, car exhaust, neon lights, winds, and countless ongoing stories, the little leaf will grow into a golden season.” Grass, fallen leaves, and winds signify the reason for Xia to live her life to the fullest. With tenacity one will grow into a golden season, even if it is a leaf fallen.
About disability, humanity, and inner tensions and confusions, there is a lot Xia wishes to say that she would not normally. She uses herself as a test for her ideas, a case to analyze. Through herself, she writes about the loneliness of common people.
In 2018, Xia finished the Monologue, a collection of short prose, with which she hoped to go deep and take a step further after life’s trials. “It’s not your body that should not belong to you. Rather it’s your soul.” She likens disabled people to the toad that has a human soul. This toad is destined for a lowly life even though it aspires to gain some value by killing pests. For people with disabilities, this reflects a cognitive misalignment between the self and the world. According to Xia, there are three ways to regard the body and the soul: one that admires the soul; one that adores the body; and one that equalizes body and soul. She put herself into the last category – a body-soul equalizer, who still tries to fight for her toad-like life despite many episodes of despair. “I can’t get out of it. I am no stranger to such struggle and pain.” Tugged between the negative and positive forces, Xia has managed to levitate the heavy burden of her body by freeing up her soul. Her personality, as well as her poetry, demonstrates the lethal hardships and strengths she has experienced.
“Mother is taking us further down this road away from fears”
Before the advent of e-books and the kind of capacitive stylus pen that could be held by the mouth, Xia needed her mother’s help whenever she wanted a page turned. In the warm winter days, she was positioned by the window to get more sun while reading. When it was time to turn pages, she would look up and take heed of everything in the room – the bed sheets flattened out, the warm milk ready to drink, and Mother scrubbing each and every piece of furniture, then mopping the floor, then washing the tea cups, then doing laundry, then refilling the hot-water bottles. All the while, she would walk over to turn the pages for Xia or to adjust Ning’s sitting posture.
At this time Mother was content, Xia thought, and that was the kind of contentment trickling out after many a sleepless night with her daughters and hundreds and thousands of exhausting hours tending to their needs.
How her parents listened to the doctor’s advice in the first place, how they carried the babies and loads of stuff onto the train, how they begged for a bowl of plain noodle soup to feed the youngsters when they had spent all the food stamps, how they all crammed into one basement room with another family…Xia could only feel such segments of her early life by her mother’s accounts. For a long time she could not bring herself to writing a poem about her mother, “only because I could not see her clearly in mistaking her presence for the completion of daily trivia, for courage to go after my dreams, and for my woe.”
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But when she began to set her mind to the task, she could not stop. About her mother she wrote, “My day dawns when Mother has cooked breakfast, dragged out the sun, and has pulled apart the curtains. My night falls when Mother has tidied the room, hung up the moon, and has switched on the light.” She went on, “When Mother stirs in her dream crying and cursing, I decide to wake her up. Once I do that, all her sorrows and fears will be gone. and how good it will be.”
Apart from her and her sister, Xia cannot find anything else that matters in her mother’s life. The longest time they were separated came in 2017, when her mother had to be hospitalized for bronchitis-induced asthma. “How can you make it when I’m gone?” Clothing, tying shoelaces, combing hair, adjusting the tilted foot…these minute details of everyday life had long imprinted on the mother’s mind. Upon leaving her daughters, she cried. Xia also shed tears, not because her mother was sick, but rather because she saw the truth: “Mother is really getting on in years. When she is no longer able to provide for us, the world will become cold and bitter to me. We have a colorful world only when our parents are around.”
Xia regards her mother as a comrade-in-arms fighting in the same trench. In those two weeks when her mother was away in the hospital, Xia felt panic and phoned her many times. “Do not worry. Just do what the doctors say and focus on getting better.” She consoled her mother while thinking the worst. “Without my mother, I would die a slow death in bed. That I’d have to accept.” After she thought it all out, Xia turned on her positive side and had her mother back again.
“Alone Mother faces her own illness. Even I can’t share her pains, just as she can’t share mine. The difference is, this time Mother still thinks about me and I think about myself.”
In 2019 Xia finished a 17,000-word essay entitled “A Narrative about My Mother”. She hopes to further expand the motif, when she can, to cover every memory and moment and piece them all together into a better narrative of what she really wants to say. “Every day Mother is taking us further down this road away from fears. Every detail of life marks her travail. She has put too much into this – devotion, struggle, and faith.” The road her mother tackles, Xia knows, is much longer and bumpier than her own.
“I just wanted to see more of the world”
In May 2015, for the first time in her life, the 30-year-old Liu Xia went to school. Self-teaching with books and online MOOC courses was not enough for her to climb out of her career bottleneck. “I was at the crossroads. I knew my writings were not good enough, but I had no idea how to improve myself.”
She did not know that most universities in China allow visitors to audit their courses until a net pal from Hebei Teachers’ University told her so. Later she and her sister were given help and it was arranged for them to study at the university 50 kilometers away from home. Their mother accompanied them to take care of their personal needs within the school timetable and to take notes for them in class. Worried that this might be too much for her mother, Xia would sometimes just take one meal a day. The experience was “such an impact on me,” as she exclaimed, after only one and a half years of campus life.
She learned, for one thing, the importance of theory in creative writing, as opposed to her earlier assumption that literary works were to be read, not analyzed. Now she came to understand that allegorization in poetry is not all about adding ambiguity, for poetry by itself is multifaceted in meaning. Xia’s favorite course was An Introduction to Literature. She would also make time for courses in other grades and disciplines, in addition to several public speaking contests she attended on campus. Her engagement in the academic world – and what came out of that – did not only mean academics for her. More significantly, it expanded her horizon and opened up more possibilities. Now she is able to look deeper into herself.
“There’s nothing more I expect to have; I just wanted to see more of the world.” Xia wrote in the beginning of her essay “Class Notes”. As she observed people around her, she felt her existence amidst them.
“Why does that girl on the right before me seem so popular? Because all professors need a response. Communities are so similar to one another: one or two members take the lead and stand out while most are in supporting roles submerged thereunder.” In a life away from home, Xia found her path to sociality, but she was very much aware that her way of life would always be different. “There I have my light, my mother, my book stacks, my poems, and my dreams and fears.”
More than 300,000 words of Xia’s works have been published, including two anthologies of poetry and prose respectively entitled “The Time of Long Grass” and “Meeting Life”. To her, writing is an ever-ongoing business. Every piece of writing is a new start. She doesn’t have the so-called five or ten year plans. Her sole focus is on how to transform complicated thinking into a fine choice of words. She wishes to travel to places entirely different from her living quarters, to see natural grandeur and experience local tradition. What is missing from her works is missing from her life. As she allegorized her dreams through the image of humble grass, “When signs of life show up everywhere, no one knows that the dream of the grass is the same as that of the spring.”
Article by Wang Yumeng Photos by Wang Weiqian
This story is part of a series of articles published as an exclusive editorial exchange between China Press for People with Disabilities & Spring Breeze and ABILITY Magazine
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