Searching for the Language of the World of Illness
“Banda’s Story of Surviving Illness”: Society’s Ignorance of the Sick Body
※ The “Banda’s Story of Surviving Illness” series attempts to find the wisdom and strength to overcome illness by imagining and discussing from multiple angles how it is experienced and can be analyzed.
Responding to Questions About My Health
It’s the new year. The period of time when we most often exchange inquiries about each other’s health. My friends tentatively ask me how I am doing these days. I tell them I definitely feel better than I used to, then say I am actually not okay. Often, I ramble without being able to give a suitable explanation. Eventually, I say I’m not sure. My friends apologize for asking, say they shouldn’t have. But it’s not their fault. How can I describe my body, this world that I experience?
It is essential for a sick person to describe the world they experience. To be ill is to realize that one’s map to life has become useless, to find oneself in an unfamiliar world. It’s a process of learning and adapting to a new language the body is speaking. If one cannot properly describe the new world one now lives in to oneself and others, it’s easy to spiral into guilt or misunderstandings. Ultimately, it leaves you vulnerable to feeling alienated from society.
At the same time, it’s important for those who have relationships with the ill to understand the world of illness. The person one was familiar with grows unfamiliar in illness. If one doesn’t want to lose this person, one must adapt to this change. Vague responses such as, “They must be going through a hard time because they’re sick”, “They’re more sensitive now”, or, “They must be in so much pain to be acting this way” have clear limitations. Without an understanding of the specifics, one comes to understand the ill through emotions such as pity or sympathy. It becomes difficult to maintain a relationship based on mutual affection, empathy, and trust from an equal footing.
Furthermore, stories about the world of illness are useful to everyone. Humans, though the timing may differ, all experience illness at some point in their lives. The ambiguous fear that people feel about illness can be alleviated by listening to voices from the world of illness and imagining this realm.
But it’s not easy for a sick person to describe the world they’ve come to live in, or for someone to listen to and understand an ill person. Though there are countless people in the world who are suffering from illness, the overwhelming majority of stories about being sick are told by the person providing treatment (a doctor) or another healthy individual. Even stories told by the sick themselves are often narratives about how difficult it is to live with illness and how the sickness was overcome, often concluding with a rumination on the preciousness of life. The world wants to hear stories from the ill about how sickness can be conquered, or about how it at least has some sort of utility. In other words, stories that help listeners feel relieved about their normality (health) and reinforce the belief that illness can be controlled.
Taking Care of Children and Taking Care of a Sick Body
I am a person who has a difficult time describing my own feelings or experiences. In addition, this world lacks the language that can describe the lives of the ill. Inevitably, I have often failed to describe the world I live in. This led me to search for an analogy for my situation. Recently, I encountered people whose emotions are similar to mine though they are not sick. They are my friends who are raising children full-time, or have recently found new jobs after taking time off to do so.
My friends spent the past few years at home taking care of a baby, and I taking care of my body. They said they now find it difficult to keep up in conversations, that every piece of clothing in their wardrobe is out of fashion, and their social networks have become limited. They said it feels like they’ve fallen behind, that this self feels unfamiliar. They also said they worked hard every day, but because those past few years are considered useless and meaningless in society, they are merely women with career gaps. I kept nodding throughout their stories. Every time they spoke, they divided their lives into the time before and after they had a child. I divide my life into the time before and after I became sick.
What I especially empathized with was my friends’ experience that time no longer belonged to them. When something happened to their child, their own plans were immediately cancelled. This was true not only of those who were stay-at-home mothers, but also those who’d managed to find a new job after much struggle—they would take an afternoon off despite pressures at work, and do what they needed to take care of the child. In my case, there are a few reoccurring symptoms such as my nausea becoming overwhelming, instead of the faint backdrop it usually is, or an abrupt drop in blood pressure. When these symptoms flare up, I press the pause button on what few social activities I’m engaged in. I lie flat, tend to my body, and quietly wait for this time to pass. This makes me feel like time does not belong to me but to the illness. As though time has been colonized by illness. Childrearing, at least, is limited to a certain period, but illness is colonization without an end in sight.
Caring for one’s body is like housework in that you can’t tell if you have done it, but when you haven’t, you definitely can. If I skip yoga for a few days, or don’t stretch before going to bed, I quickly find my body aching in several places. I usually spend less than 4 hours on the computer per day, but when I exceed this limit a few days in a row, my eyes become bloodshot and my lips crack. If I don’t take care of my body quickly and vigilantly when it creaks, the symptoms worsen to the point where I have to go to the hospital. It feels as though I’m beholden to a very sensitive and exacting master. I feel as though I’ve become a servant to the body.
Citizenship in the Kingdom of the Well and the Kingdom of the Sick
This is a slight digression, but sometimes people ask those who spend most of their day at home, “Don’t you have so much time?”, or even call them “people who don’t have anything to do”. This includes people who are devoted to childcare or are full-time homemakers, as well as people like me who are ill and those who take care of sick family members. In actuality, all of these people are the time-poor, people whose time does not belong to them. Though they may not be doing something right at the moment, much of their time is spent in waiting, and they don’t have much agency over time. Not to mention that periods of rest are irregular and not guaranteed because they don’t clock in or out from work. People like this perform a lot of physical and emotional labor and work through many difficulties in their day-to-day, but because this work is taken for granted, they are hardly respected in society. (“Of course you should take care of your body/your child/your family!”)
In any case, these days I feel a bit more free as I engage in social activities and perform roles other than that of a servant to my body. I take extra care of my body when I have a meeting in the late afternoon or evening. I spend a bit more time doing yoga to relax my muscles, and go to sleep a bit earlier the night before. The day of the meeting, I only do a little bit of housework, and keep my energy consumption low.
Only then can I avoid turning pale or becoming dulled by fatigue in the evening. All the other participants of the meeting have been working since the morning, but I can maintain an energy level similar to theirs only when I ‘manage’ my body just so.
Sometimes, people at the meeting tell me that I don’t look sick because I’m able to participate normally(!) into the late hours. When I hear this, sometimes I feel thrilled, because it is as if I’ve gained citizenship in the kingdom of the well. But there are also times when I feel unseen. It feels like the bodily condition I’ve gone to great lengths to create has been glossed over as something easily achieved and given. Perhaps this is simply the inferiority complex of a citizen from the kingdom of the sick. Or perhaps I am disappointed by the world’s ignorance toward living with a liminal body like mine, a body located between full recovery and struggle against disease.
Though I live in service to my body, I don’t devote my life solely to taking care of my health. Once in a while, I go out for drinks or stay out late. I know that staying out one night will make me sick for at least a day or two, but I plan for this too and go out anyway. I do this because I want to see my friends and have a rowdy, fun night. I don’t want to postpone everything for the day when I regain my full health, a day I don’t know the date of. Though of course, this kind of activity is possible because my health has improved quite a lot compared to before.
Like this, I (and a number of people who are sick) make a great deal of effort and occasionally live a life similar to the day-to-day of citizens who live in the kingdom of the well. But some may become skeptical after observing me participating in a long meeting without looking particularly tired, or seeing me drink late at night. They might wonder if I’m fully recovered, or if I’m overly sensitive about my illness, even if they don’t mean to say I’m outright faking it. The world is so ignorant, judgmental, and skeptical of the sick body. Of course, it’s not just the sick body it exhibits such attitudes toward. All bodies of minorities experience such things. We must continuously explain and prove ourselves. If explanations are not necessary, one does not belong to a minority. (In contrast to men, able-bodied people, and the healthy, women, the disabled, and the ill are always required to explain themselves.)
A World Where Diverse Bodies Live
Here is a form of ignorance I encountered recently. I was talking to an acquaintance about how after a meeting in the evening, I sometimes feel unsure about whether I can stand in the bus for an hour on my way back home. I want to rest for a while and recharge, but cafes are noisy and the chairs there are too narrow. At times like these, I open my map application and go to the nearest sauna. I shower quickly, and lie down for about half an hour to rest.
After repeating such experiences, an idea occurred to me. What if there was a space in subway stations where people with low energy could rest, the way there is a breastfeeding room and an electric wheelchair charger? A safe space like the women’s rest area I used in college, with a small bed. Then people with menstrual cramps, the elderly, and people like me who have low energy due to illness could share this space. When I brought up this idea, my acquaintance agreed, and added with a laugh that it’d be nice if the restroom in this space had a sink within the stall so that people who use menstrual cups could wash them comfortably.
At that moment, someone who had been listening to our conversation said, “If you’re so weak, why do you go outside? People like that should stay at home.” Perhaps because they noticed my rigid expression, they added, “That’s what’s safe for them, too.” It’s a common way of thinking. “Why take the bus on a wheelchair? You should just stay home. I’m just saying it to help you.” “Why come to a crowded restaurant with a little kid? You should just stay home. I’m just saying it because the child looks tired.” “Why go downtown when you’re old? You should just stay at home. I’m just saying it because you might get tired.”
I’m tired of prejudiced words fueled by ignorance. But incidents like this remind me of the urgency of thorough descriptions of the world the sick body lives in. The need to remind others that a world of diverse bodies is possible, that though we have ‘bodies like this’ we are still also part of the continuum of life. It’s necessary for diverse bodies to move around in the world and raise their voices. By going outside and actively showing that we exist, we will make the world recognize that ‘bodies like these’ exist, and gain our rights. And finally, we’ll be able to live the way we desire!
Whether ill or not, disabled or not, raising a child or not, elderly or not, we all have the right to pursue different values and participate in society. I wanted to tell this person, “We’ll decide how and where we’ll stay. Don’t forget that we didn’t ask for your approval for how we are going to live!”
As I mentioned earlier, each of us eventually becomes sick and experiences disability. But listening to the voices of the world where diverse bodies live and learning how to respect and live with those bodies are not merely acts of thoughtfulness for the bodies we will become in the future. Even for bodies currently seen as “normal”, recognizing the existence of diverse bodies creates greater comfort and freedom.
Published Jan. 26, 2017
Translated by Hoyoung Moon
*Original article: http://ildaro.com/7750
◆ To see more English-language articles from Ilda, visit our English blog(https://ildaro.blogspot.com).
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