The books, we reads them

HELLO HI HEY I AM HOME and it is disgusting because my father is in India and apparently with resident neat freak gone everyone's become disgusting. I have taken up the post of Temporary Neat Freak, i.e., she who does the week's worth of dishes left in the sink and getting smelly. I had thoughts, dreams, hopes, for this bloggy post but in the end I am sleepy and lazy and the house is gross.

A while ago, the Rejectionist (I link that an awful lot, if y'all aren't following yet you should be) said something along the lines of "write me guest posts about if you are a minority/woman/disabled person, what do you read and what bugs the shit out of you?" (paraphrase.) I submitted and was rejected (star-struckedly, if that is a word. I was star-struckedly rejected. In that I was star-struck at recieving an actual return email even if it said no). In addition to "no", the return email and also R. on her blog said something along the lines of (again, paraphrase) "blahhh only five chosen, so many recieved, go post on your own blogz plz" and also something along the lines of me being "really great." Oh, wait.

Regardless, I give you The Post I Wrote While At My Internship, three words per 5 minutes because I felt guilty not doing actual work. Very little revising happened between then and now, because that would require effort and there is laundry to be done and piles to be made and sleep to be had!

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Hello, friends! I almost chickened out of writing this little nubbin of a piece because, as I sat in the car with a screaming cousin-once-removed, I thought to myself “Well, this is silly. The Rejectionist wants marginalized people, not random isolated person who feels totally separate even from the others in her situation.” And then I thought to myself “well that is an arrogant way to consider oneself, especially with all the energy you put into functioning like a normal person.” And then my head started to hurt because Cousin Smudge has quite a pair of lungs.

To remind you, I was diagnosed with lupus during my 9^th summer Alive, and I do not think I need to explain that there is not much in the way of lupus advocacy unless you really look for it. (I mean, we cannot even decide if our Awareness Month is October or May. And then we are shocked when no one knows what lupus is.) Furthermore, I can find a handful of people my age who have the disease, but have never found anyone my age who’s had it this long. I haven’t, in other words, found anyone else whose childhood was both kind of normal and completely enveloped by terrible health. Lupus is usually treatable, but it can be completely debilitating or fatal. But I am so not here to tell you about all that. I do that enough here.

Only thing you really need to know about me: I didn’t tell anyone I was sick until I was 17. I mean, my peers. My parents and teachers knew. But talk about isolating yourself.

Inconveniently, the year of my diagnosis my class read a book about a kid with muscular dystrophy. Well, specifically, we read a book about a girl whose brother had muscular dystrophy. (I cannot for the life of me find this book, but I swear it exists.)

I started to get uncomfortable really quick.

For one thing, I became painfully aware that my disease, despite the swollen fingers and the years of chemotherapy and the no-end-in-sight, is really pretty un-epic. In fact, the phrase you’ll see snarkily referenced on pretty much any lupus site is, “but you don’t look sick!” …And we really often don’t.

Furthermore, little MD boy was pretty nice to his sister. Actually, he was full of hugs and smiles. I’m not full of hugs and smiles, I thought to myself. Not only am I healthier, luckier, and going to live longer than Fictional Character, but I am also a way worse sport. Fuck.

(I probably didn’t think “fuck” back then, but the sentiment has held pretty firmly.)

It’s true, all things considered, I am capable of appearing to have a good attitude. But this is more a matter of keeping my mouth shut, or of being embarrassed to speak up. And for many, many years I did not read very much at all. I read and re-read Lord of the Rings, the Harry Potter series, and Ella Enchanted over and over basically until my senior year of high school, apart from what I read in school and the occasional Other Interesting Thing. (Hrm, Ella Enchanted, huh. A young girl who looks totally normal but is cursed, can't remember ever not having her "disease" and self-isolates to avoid having to face her condition. Fascinating. Found one that makes sense!)

I think I discovered the pattern with Disabled-Character-Books early even though I really couldn’t put it into words until, like, now. Ill characters seem to be used in literature as props. I’ve found very few books where the main character the one with the illness and I think there are several reasons for this: 1. healthy authors are not willing to presume to know what being unhealthy feels like. (Also, the few things I HAVE found suck, so I think in general healthy authors are correct in shying away from it.) 2. sick people tend to not have particularly exciting lives and 3. blah blah blah it’s the family and friends who blah blah blah. (No, really, I believe that #3 is totally true and valid and shiny, but we’ve all heard it before)

(And here’s the part where I try really hard not to get beat up by a cancer survivor.)

With an “epic” disease – the sort I both envy and fear – I think that life gets sort of snatched away from the victim for however many years or months, but eventually there are one of two outcomes: survival or death. (And then after that – uh, survival, that is – there can be relapses that are incredibly tragic and no one ever gets over these things completely and I would never, ever EVER minimize that sort of suffering.) But in my little un-epic disease (and chronic pain, and fibromyalgia and diabetes and asthma and endometriosis etc.) there may never be those months and years of lifelessness. I went to school and I never got held back and I even participated (kinda) in gym and (some) extracurriculars. But this is while my immune system was tearing me apart and I was supposed to have not-so-many years left pre-kidney-failure. But this does not lend itself well to literature because how on earth do you balance something that is has both absolutely no place in your world AND affects everything you do? Did I mention my head hurts?

So I cannot read books like My Sister’s Keeper (didn’t even try)...and have in general avoided any cancer-esque anything (me and cancer, you may have noticed, have an interesting relationship. Rest assured, not all of my refusal to deal with the matter is due to bitterness that people care about cancer and not me. Most of it is due to utter terror that I'm going to get it any second because, in an almost hilariously painful irony, all the years of chemo I had? Yeah, it increased my risk for certain cancers by like five billion. Okay, exageration, yes.)

You know what I can and do read though, is psychologically...messed up?...main characters. That’s where you get the real story, the half-conscious self-isolation, the still-going-through-life-but-invisibly-different, all of that. Like, try Fun Home, Alison Bechdel's graphic memoir about the death of her father and her coming out as a lesbian, the former of which happened too-close-for-comfort after the latter. In fact, creative nonfiction memoirs (as opposed to celebrity memoirs. I'm talking the people you know BECAUSE OF their memoirs, not people whose memoirs you read because you know them) tend to be fantastic for me because writers are so often, oh, what's the phrase? Fucked up? Yes. Or I obviously mentioned Ella Enchanted. Sometimes I go hardcore into psychologically harsh novels, but that can be hard too because it's also important for me that my characters are functioning like I'd like to be, and sometimes if I sink into that deep depression in a novel no one's functioning anymore and it is at once frustrating and discouraging.

Seeing a hole in the market (observational genius that I am) I finally started writing about lupus when I was a senior in high school. I wrote a couple short stories and a long-ass novel (I mean, it wasn’t good, let’s not get ahead of ourselves) with lupie main characters. Then I wrote several personal essays in college. And then I thought to myself, hmm, this is strange. I want to try and get some distance on this. Maybe I’ll make a non-main-character ill instead, and see if I can get both sides of this. After all, I’ve had to live with myself more than anyone.

Friends, I fell into my own trap, and my lovely little lupie character became a prop like everyone else’s sickies. Only, because I am painfully aware, I have the opportunity to shred myself and make it better.

So I guess I can’t complain. Well, yes, I can. And I do. But when I come across these stories/books/obnoxious-pretentious conversations, I have to shrug a little and say ‘well, at least they’re trying.’ And then I wander into places like this where I try to yell loud enough for people to hear.