The Unpleasant Ill

Reading Lina Meruane’s Seeing Red While Disabled

Lina Meruane’s Seeing Red is not exactly autofiction, even though the narrator is a Chilean writer named Lina Meruane, and the narrative is a fictionalized maturation of an event in the author’s own life. While at a friend’s party in New York, aforementioned narrator Lina suffers a mild stroke that leaves her completely blind in one eye and partially blind in the other.

“[…] a firecracker went off in my head. But no, it was no fire I was seeing, it was blood spilling out inside my eye. The most shockingly beautiful blood I have ever seen. The most outrageous. The most terrifying. The blood gushed, but only I could see it. With absolute clarity I watched as it thickened, I saw my stomach turn, saw that I was going to retch, and even so […]”

Lina has to navigate through a few major life events which are difficult (but not impossible) and many small, daily life events which become more and more so. She not only has to learn for herself what it means not just to be blind, she has to teach her loved ones as well–when she literally and figuratively can’t see the future ahead of her.

I have read a few reviews of this work, but none from a disabled person. And so. I am not blind. But I have chronic migraines and occipital neuralgia, a persistent pain in my neck and shoulders resulting from nerve damage to my occipital nerve. Neither are permanently debilitating, but only occasionally so. Like Lina’s vision sometimes comes and goes, so does my pain come in waves; I have to manage constant pain by degree. And management of chronic illness has rules.

“[…] admonitions impossible to follow. Stop smoking first of all, and don’t hold your breath, don’t cough, do not, for any reason pick up heavy packages, boxes, suitcases. Never ever lean over, or dive headfirst into water. The carnal throes of passion were forbidden, because even an ardent kiss could cause my veins to burst.”

Do not enjoy luxuries. Do not get sick, do not work, do not move, do not enjoy leisure activities, do not love. To avoid the disaster means living in a prison. Lina not only breaks all of these rules, but she does so with careless abandon. Life is risk.

What healthy people superficially know, but do not understand is that disability is transformative.

“And how was I supposed to know what kind of face I had, when I’d misplaced my lips and my mole, when my earlobes had gotten lost. All I had left were a couple of blind eyes.”

The metamorphic body horror does not stop there. Throughout the novel, fingertips morph into eyes, the eyes of others become delicacies to be devoured.

Lina is no fool. She is aware of the people around her, and they make her curt and resentful. Meruane’s prose (and Meghan McDowell’s translation) contributes to the acridity of the narrator. The prose is composed of short scenes, rather than chapters, with titles that are impressionistic rather than episodic. Entire sentences burn away rather than conclude. Lina resents her family members for discussing her operation as an inevitability without considering that she is trying to discover her blindness. They are trying to repair something broken while she is grieving a loss. Their inability to speak the same emotional language is foretold in a scene in an airplane during which Lina endures a panic attack, making her unable to communicate with a woman even though they speak the same language. Lina eventually lashes out at her mother for packing her suitcase for her when Lina just learned how to pack it by touch. She remembers her older brother’s refusal to be her caretaker when she was younger. Her boyfriend is bombarded with sympathy for his burden by their friends.

The Rumpus review claims “Fictional Lina is not a character anyone will call relatable or even comfortable.” How adorably reductive. I am quite comfortable with fictional Lina; I can relate quite well. Because “fictional Lina” is “real Jan.” Personally, I do not care if Meruane experimented with the emotional brutality of fictional Lina in some sort of cold thought experiment. Factual truths don’t matter when emotional reality is no less true. Or should I not consider that which reflects my own reality to be a “true” story? Claiming this is not a true story erases my true story. It is easy to dismiss a fictional character. But readers are real people, and less conscientiously able to boot. Yes, fictional Lina is unpleasant, caustic, and manipulative. But she is also sincere and independent. Try to get in the mindset of an independent-minded dependent. If it helps, Meruane spells it out: the English title of this book is Seeing Red*; I cannot imagine why a reader would expect a pleasant main character when an on-the-nose metaphor for an angry or hostile person/personality is the title of the book.

Like Lina, I have lived with illness my entire life. “I don’t remember having even a moment of childhood. Not an instant of calm. Not a second when I wasn’t wondering when the hand of tragedy was going to touch me.” Like Lina, I have faced doctors who do not remember my name or condition.

Like Lina, I have a mother who works in a medical profession. My childhood migraines went (officially) undiagnosed until I was nine years old because my mother treated them at home. While she did a great (and selfless and often dirty) job–she never condescended to me or refused to believe I was in pain (unlike, oh, every other adult)–I wonder if I might have a clearer grasp on my pain if I was allowed more doctor visits. To this day, I really don’t know how to talk to a doctor about my pain. I just expect them to know (because she just knew) even though I suffer from one of the least understood neurological disorders. Sometimes helping is helping. Sometimes it is diminishing and infantilizing. “Your help invalidates me, I repeat, giving no quarter to my mother, who is innocent, but also, in a way, terribly guilty.” I forgive Lina for blowing up on her mother. I have done the same. (And our mothers, being our mothers, forgive us.)

Like Lina, I have a brother who refuses to acknowledge my disability because of the burden on himself. Like Lina’s brother, my own brother does not have time for me.

“He was handing in his resignation and they accepted it because they weren’t brave enough to make him be my nurse and my school tutor in addition to having to be my brother which he hadn’t even agreed to. No one had ever consulted him.”

I wished I could be struck blind after reading this. He has his own life. We do not speak. (Unlike Lina, I do not have another compassionate, morbidly humorous sibling.)

Like Lina, my partner is a supportive aid and ally. It comes from pure love. He often gets lauded at work (we both work for the same company) for his sensitivity and consideration for employees’ self-care because “he knows.” Much of the time I am deeply, bone-throbbingly grateful. I never asked someone to love me this much. But I beg him to understand. “You make me feel terribly alone. (But that’s what we are, two strangers brought together by accident in the impossible riddle of illness.)” I am resentful. “He knows” because of me. He gets to be the martyr who adjusts his normal life to my abnormal life. (Keep reading, I will address “normality” in a moment.) Other healthy people can empathize only with his suffering because it is a way that they can express kindness while distancing themselves from the ill.

“It was one thing to theorize strategies of the subaltern and resistance from the margin, and quite another, radically opposed, to empathize.”

Yes, I am grateful for this ally. Yes, I am grateful for this love. Yes, this is a test.

Perhaps this story is a thought experiment on how a different Lina Meruane would deal with a chronic condition–something that may never have become of the writer Lina Meruane. Good for her. Not so for me. But I believe that Meruane understands what it is liked to be watched and to be unable to watch back. The ill not only have to manage our own illness, but also teach those around us how they are supposed to love us. For the ill, illness is normal. What I mean by this is that this illness originated inside of my body. As part of me. It cannot be cured, only managed. As the essayist Susan Sontag wrote

“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”**

Reader, do you think that you, yourself, are not only one doctor’s visit away from standing in my place? Seeing from my eyes?

And yet, we live. And that’s what this is about: not a diseased death, but a differently-abled life. Lina continues to consume literature (books on tape), moves house, travels internationally, initiates intercourse with her boyfriend, navigates hometown avenues by memory for a foreign driver, writes. While I want to advocate for those with chronic illness, I don’t want that the be the only thing anyone ever knows about me. By focusing on the unpleasantness of the character of Lina Meruane, one is metaphorically (forgive me, Sontag) blinding one’s self to Lina’s other life experiences. As Lina’s mother, who removes Lina’s one social visitor, does.

I have spent a lot of time on personal illness, and less time on other dimensions of the book such as the health of nations as depicted in the dual September 11 crises in both the United States (2001 World Trade Center terrorist attacks) and Chile (1973 coup d’etat and overthrow of socialist president Salvador Allende leading to years of military dictatorship under Augusto Pinochet)–both events leaving permanent scars on their respective cityscapes. Coincidental tragedies deeply tie both home countries to the narrator, and imply that healing is not underway.

——

*the Spanish title is Sangre en el ojo, blood in the eye. If this has a specific metaphorical or idiomatic meaning beyond the literal translation, I am unaware.

**Susan Sontag, Illness As Metaphor. 1978.

April Favorites

T.S. Eliot famously said, “April was a bitch of a month.” (That’s not what he said.) I overextended myself, picking up extra hours and responsibilities on top of my full-time schedule in February and March, and my migraine and nerve pain rejoined and knocked me on my ass in April (which is why this post is coming a few days late). But there were still a few lilacs out there. Continue reading

February & March Favorites

I missed February favorites because things have been so busy at the bookstore. So I’m going to include both February and March favorites here.

A Change of Scenery: Alpine, Texas

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I actually took a couple days off, and drove out to West Texas with my husband and pupper. (Tuco is so good in the car. I feel bad for everyone who doesn’t have a Tuco.) Alpine and the surrounding areas are so beautiful. Time slowed down. Stars are bright. Hills are hilly. And people are so friendly. This is the Texan-friendly that Austin sometimes forgets. We visited the McDonald Observatory for a star party and witnessed a satellite flare that was brighter than all the stars. Picked up a stack of used science fiction/fantasy mass markets at Front Street Books for under a $10 (indies forever). Alpine reminded me of Thibodaux. My parents would love it.

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Possible summer reading challenge?

For my eyeholes:

Books

Shelter by Jung Yun which I call “the quintessential Korean-American novel” here and I admit that I don’t actually have the authority to make that proclamation. And I don’t know how to exactly articulate why I think this is so (I am not Korean-American).

Human Acts by Han Kang
If you follow me on my social media at all, you would know how much I love The Vegetarian. Last November (way back in 2015), I called it “my favorite book of 2016.” Three months in and I stand by that. Human Acts is Kang’s second English language translation. It isn’t available stateside yet, but I can’t wait for it to arrive. This is a collection of interconnected stories of victims and survivors of the Gwangju Massacre of 1980. If you don’t know anything about the Gwangju Massacre, Kyung-sook Shin’s semi-autobiographical novel The Girl Who Wrote Loneliness paints a delicate picture of the social conditions and climate for South Korean factory girls around the time of the massacre.

Fates and Furies by Lauren Groff
Lauren Groff’s masterful story of a marriage offered our best (and most controversial) conversation for the New & Noteworthy book club. This is a story about an unpleasant woman married to a likeable man. As an unpleasant woman who is married to a likeable man, it’s real to me that marriage is a liberating thing.

Television

I pulled back from television a bit these last two months, but I did catch up on Broad City. God, I am so late to this, but so glad I am watching this.

For my earholes:

Audio Books

I had a bad experience with an audio book on a long drive several years ago. It was the wrong book, wrong author, wrong reader–all soured me on audio books for years. But with that 7.5 hour drive to (and from) Alpine, Texas, I downloaded a couple of audiobooks. A coworker recommended Aziz Ansari’s Modern Romance, which is, of course, hilarious, but also turns out Ansari as a researcher and sociologist on the evolution of dating, love, and coupling in the modern era from the middle of the 20th century to today. Sure, he calls you lazy for listening to the audio instead of reading the book (which makes me slightly uncomfortable because what about blind listeners?) but those funny voices are worth it.  Yes Please by Amy Poehler is the second book we listened to on the way home. Did you know that she built a personal recording studio at the foot of Mount Rushmore for this very recording? I’m writing this from that very sound booth (you can’t prove that I’m not)! This is the book that made me a full convert to audiobibliophile (that’s a word now). Amy packs so much extra stuff into this recording that you just don’t get in reading a book by yourself: the voice talent of Kathleen Turner, Patrick Stewart, and her own parents; interviews with the important players who helped shape her career; and a live recording of her final chapter from the UCB Theater.

Over the last two months, I’ve listened to The Disaster Artist: My Life Inside The Room, the Greatest Bad Movie Ever Made by Greg Sestero, Scandals of Classic Hollywood: Sex, Deviance, and Drama from the Golden Age of American Cinema by Anne Helen Petersen, Gumption: Relighting the Torch of Freedom with America’s Gutsiest Troublemakers by Nick Offerman, Assassination Vacation and The Partly Cloudy Patriot by Sarah Vowell, and Dr. Mutter’s Marvels: A True Tale of Intrigue and Innovation at the Dawn of Modern Medicine by Christin O’Keefe Aptowicz

Podcast

During vacation, I also started listening to the You Must Remember This podcast by Karina Longworth. Longworth focuses on the hidden histories and forgotten stories from Hollywood’s first century. I am obsessed with this podcast. It has infiltrated my entire life. Inspired by her Star Wars episode VI on Marlene Dietrich, I read Karin Wieland’s Dietrich & Riefenstahl: Hollywood, Berlin, and a Century in Two Lives (reviewed here). And by her twelve-part series on Charles Manson’s Hollywood, I read Vincent Bugliosi’s Helter Skelter: The True Story of the Manson Murders and Adam Nevill’s Last Days. (Also the reason I listened to Scandals of Classic Hollywood on audio).


Music


I usually avoid concerts because I don’t typically enjoy crowds. I specifically don’t enjoy Austin concert-going crowds in which there are always people who stand in front of me and talk loudly to each other above the music that I’ve paid to see and to hear. (Always.) But I did attend one concert at SXSW at K-Pop Night Out. (I’m trash for pop music from a certain area of the globe.) And because that area of the globe is not this area of the globe, I don’t get the opportunity to see some of my favorite bands. I was happy to drop everything and see Love X Stereo & Mamamoo at the Belmont. I had to leave early, so I missed Haihm, which I suspected would be a little bit too loud for me (I also missed Zion.T but I’m not exactly a fan of his anyway so there was no big loss there). Also, Block B just released their comeback single (their first in over a year in a half!) 몇 년 후에 (A Few Years Later) earlier this week and yes, I am trash for this group.

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Mamamoo at SXSW


Follow these Accounts:

Weseldoesart for daily drawings. She even gave me the two she made of her unicorn.
Jjoongie shares the same tastes as I do in fiction, but her photos are way better than mine.

Happy reading!

~jan

January Favorites

In December I finally subscribed to Austin Kleon’s newsletter. Each Friday he sends a list of 10 things he’s into. Considering that my weekend starts on Friday, that’s excellent reading for the weekend. So, in honor of Kleon and his famous Steal Like An Artist, I’m going to steal from this artist.

I’ll start with the thing that made me start this list:

Austin Kleon’s newsletter and blog. If you don’t follow this guy, you should. He’s great on all his social media platforms, balancing work life and personal life. He also has the most photogenic family ever.

Other Internet Media Things

A few weeks ago Marie Kondo’s second book on organizing came out. Of course, I sell this book (it’s a bestseller), but as an archivist (someone who focuses on collecting) I dislike its emphasis on present-feeling emotions. That’s why I’m glad counterculture exists. In “The Tao of Trash” and “Sifting: Technology, Trash, & Digging for Memories” the New England Media & Memory Coalition examine the arbitrariness of “value.”… Sort of like the arbitrariness of “sparking joy.”

Books

The Expatriates by Janice Y. K. Lee crafts a heart-wrenching tale of three women, all American expatriates living in Hong Kong. Mercy, in her mid-twenties and without a job or direction; Hilary, struck between the two tidal forces of her husband’s midlife crisis and affair, and the stalled adoption of a child; and Margaret, mother of three who literally loses her youngest child on while on a short trip to Seoul. As a chronic list-maker, I’m creating a brand new personal reading list just to put this book at the top: Fiction – The Complex Inner Lives of Women. (I just don’t know where this list will live just yet.) Lee puts into words what would be otherwis unmentionable. It’s beautiful and harrowing and foreign and familiar.

Movies & Television

A Girl Walks Home Alone at Night (2014). I’m not sure why it took me so long to come to this film, but this is what I want horror to become. This Persian-language American horror film takes place in the fictional Iranian ghost town of Bad City (its name implies the seedy underworld that it depicts). The film’s director, Ana Lily Amirpour, describes it as “the first Iranian vampire Western.” The plot follows Arash, a hard-working young man; Hossein, Arash’s heroin-addicted father; Saeed, a pimp and drug pusher; Atti, a prostitute working for Saeed; The Girl, a music-obsessed loner who stalks those she finds on the streets late at night; and a cat. I especially love the visual of the chador replacing the traditional “Dracula” cape. I have a new favorite fictional vampire. Skateboarding into the night.

The X-Files. People who know me are surprised to discover that I didn’t watch the X-Files when it aired in the 1990s. My parents weren’t into it, so we didn’t watch it. So when a friend (whose taste is impeccable) began live-tweeting her adult re-watch of the series, and I noticed that Hulu Plus has all 9 seasons, I decided to check it out. I’m about midway through season 5 as of publishing this post. If you follow me on Twitter at all, you know that I think Mulder is silly, Krycek is annoying, Scully a goddess, and Assistant Director Skinner is…well, let’s just say I’m into it.  #janwatchesxfiles on Twitter.

Bookstagrams

Last year, suspenders83 took photos of every book she read. To keep things interesting, she scoured second-hand bookshops to find the most unique book jackets and covers out there. This year, she is hand-drawing each cover in her book journal. This is such a cool way to creatively engage with the book-as-object.

readasaurus_rex includes a lot of older fantasy and young adult books in her reading. I love seeing the tattered covers of books that took me to far of places when I was younger being given new life on new social networking platforms.

Food

Maangchi’s Korean Lettuce Salad 상추겉절이 is spicy and delicious and so easy to make. Try not to get sucked into a YouTube hole of Maangchi’s cooking videos.

BookPeople’s In-Store Displays

My favorite book store is always doing something for the community. Black Lives Matter and David Bowie’s Favorite books are two displays that are deeply meaningful to us. (I worked on one of these.)

Finally

The return of the Boston Yeti. I am now, and forever will be Texas’s biggest Boston Yeti fan.