...and then you ran through traffic and came out unscathed. 'Cause you're auto-immune!

Hur, hur, hur. My friend made that joke the other day and I decided it was the best thing ever. Now I tell it to everyone.

I recognize that I am utter fail at updating this blog now that school's gotten underway. It's not actually that I don't have thirty minutes to type things up, it is more that I have trouble finding brain power with which I can make coherent sentences. Regardless, the people who follow this blog probably have, you know, lives, so I'm not apologizing too heartily.

Anyway, things! I did the Cleveland lupus walk on Saturday which was a psychologically confusing experience. While I'm fairly open now about the fact that I HAVE lupus (I mean, I tell people, when appropriate circumstances arise, with the exception of employers and professors, who I only tell when absolutely necessary) but I am not over the roof about open displays of lupieness which has not ALL that much to do with the disease itself...I generally don't like branding myself too heartily or allying myself publicly with things.

But I got this hoodie. Oh my goodness, this hoodie. It is mortifyingly green (matches my sheets perfectly! I've already lost it three times on my bed.)and says "walk for lupus now" on one side. I got it for raising more than $100 in donations but it is just too comfortable not to wear, even though I feel really REALLY weird about wearing it.

I also got a hat. Actually, it was kind of funny because when I first got there i thought "this is so weird, you cannot tell AT ALL who here is a patient and who is supporting/family/friend/etc. There is just practically no way to tell." But then I went to get my hoodie and they looked at their list and back up at me and said "Oh, you're a patient? You get a hat. Go get your hat." At first I thought it was a pity hat but no! It was a "THESE ARE THE LUPIES" hat.

Actually it was probably neither. Or both. I just amused myself with this concept for a while.

Regardless, in a painful irony, walking 5k busted up my left leg so I am Le Hobbler now. It's so odd, my foot where i had surgery is going batshit but I can't walk on the side of my foot to avoid my toe because then my knee cracks, and my hip is just...don't even talk to me about my hip. Stupid leg. Luckily no matter how slowly I cross the street I'll never get hit! Because I'm auto......

Okay. I'm done.
Next time: Submissions from hell, including Pooky the cat.

Why being ill is incompatible with my life

Dear friends, I have somehow managed to acquire 5 jobs. Prior to Thursday, I only had two. Three. But, in a piece of exciting news, remember how this whole blog started out with fun stories about crazy submissions and nutty intern-moments? Well, the place I interned for has offered me a job as a first reader! (see here if you forgot how the process works) It pays more dollars per hour than my sandwich/smoothie/coffee making job on campus but it is probably fewer hours a week, so I am keeping my menial labor. Especially since, in menial-labor-land, i was just promoted to student manager. Also, I like making smoothies, okay?? It's not that hard to keep me entertained.

So that's three jobs (sandwich/smoothie, coffee shop, first reader), and I am a writing associate for an English class this semester (one I took and was terrible at, so this should be interesting), and then my internship emailed me again and was like oh yeah and do you also want to write up reader reports for one of our magazines?

And I was like yes. Yes I do.

This is actually so exciting, folks, even though I do not think I want to be in publishing forever, I have some sort of nifty "in" with this small part of the publishing world because they liiiiiiked me! So be liked at your internships, I guess is what I'm saying, and you, too, can overwhelm yourself with too many jobs.



So basically, I know that I'm going to get swamped and overwhelmed, but the best thing for me is to keep as busy as I want to keep and work on organizing my time ridiculously well. I don't accept my own disease as a legitimate excuse not to do the things I am doing. Mostly this is because I can't tell when I'm actually too tired/sick/sore or when I am just unmotivated. And when I am unmotivated, is it legit BECAUSE I'm tired/sick/sore? I dunno. You would think I'd know since I've had this crazy disease for eleven years but no, I don't. Oh well!

Hokay that's all for now. I am not good at updating this and existing at the same time, but shall continue to do my best!

Insecurity

I've definitely been meaning to do this one for a while, because everyone knows that it's hard to feel good about yourself if you don't feel good in general. So how do you gain confidence while living with a chronic illness? Or is that even possible?

My insecurities started really early with my prednisone face. I am still surprised sometimes when I see pictures of myself and my face ISN'T round, because I have thoroughly ingrained the idea of myself as "chubby-cheeked." And when you are insecure about your face, everything else goes downhill.

The next thing I got insecure about was my hair which, in my recollection, got gross pretty shortly after I was diagnosed, but that also corresponded with puberty (I know, the timing was just fantastic, wasn't it?) so that was probably to blame more than the lupus. Regardless, I had thick, long, wavy hair until about fifth grade when it frizzed out, yo. And thick, frizzy, unmanageable hair SUCKS when you are entering middle school and suddenly all the "mature" girls have really luscious locks. More than my face, I have always managed to associate good hair with maturity (because I never knew how to handle my hair and somehow I figured that was just a lack of maturity on my part? What?) and therefore often feel inferior to everyone around me.

And of course, I feel heavy all the time, and that leads to my wearing baggy clothes even though I KNOW I am pretty small.

All of this stems from, I think, the fact that I am hyper-aware of my body almost all the time. My body isn't particularly convenient for me; I often feel I am lugging it around. It pulls me down even when my brain is alert and wanting to be productive, and I cannot ignore it because it forces itself on me through various discomforts and pains. I feel heavy because I am stiff and it takes more effort than it should to move, as though I am carrying a bigger weight than I really am.


Okay so how can we handle these physical anxieties? Since we want to go out and feel good about ourselves and seduce people with our wits, charms, and beauties, how can we ignore the fact that everything we are feeling points to "gross"?

One of my friends has told me multiple times "the days when you feel the fattest are when you should dress the sluttiest." Taking the spirit of the comment, I have been working on getting rid of my middle/high school wardrobe: I've scaled my tee shirt size down a little, then too much, then up again so that I am comfortable but also do not look like I am wearing a sack. This has the added benefit of making me appear as though I am comfortable with myself, even when I am not.

I started dying my hair in 10th grade, and that has helped my self-esteem a lot, because there's something I have some measure of control over. I also found a hairdresser who can thin my hair out a lot without making it look stringy.

And for my face, I leave it alone. I don't wear make-up because that's just another thing attracting my own attention to my own face, which is never a good plan. I think it all comes down to tricking myself.


This feels like a very superficial blog post but I think that in a world where we are ALL insecure and we ALL feel fat and we're ALL always having bad hair days, it can help to break down a little the reasons why because that is the best way (for me?) to try and counteract it. Anyway, whatever we say when we're feeling high and mighty, we all want to look nice, at least to ourselves.

Oh hi there!

I am done bouncing around the country (Chicago-Ohio-Maryland-Ohio-Michigan-Chicago-Michigan-Ohio-Michigan-Ohio, yes, I'm dizzy too.) which means I finally have a mildly consistent internet connection and a computer free of viruses! (McGillicudy was ill. Now he is totally blank.

I got back to school today, moved all my stuff in and almost unpacked it all too, because I am mostly pretty awesome. My room is finally a good size for me (tiny! the perfect amount of tiny. My old big room felt like a chasm of loneliness.) I am trying to keep my stress level down, though being suddenly bombarded with people after a pretty much solitary summer has been a little unnerving. I got extra anxious in the dining hall, which was odd for me because I don't LIKE crowds but I am usually not particularly claustrophobic (hi. tiny room.)

I actually have things to write about, but I'm too tired to do it right now, and tired is making me a little uncomfortable both physically and emotionally so I am not in the best place to start jabbering about my health(the trick is, if I'm in a place where my life looks more humorous than depressing, I'm good to write)so I promise now that I'm at school I'll update, you know, now and then. I say, having totally overbooked myself for the semester. Fare well for now!

Da Walk

Well, I've finally found one. A walk for lupus. See, they exist! And raise...less than $10,000. I actually would really like to do it, if only for the potential hoodie, but I am extremely hesitant to ask for donations or bring anyone along with me.

WHY, HANNAH, WHY?!

Because I haaaaate asking for things from people who know me? Or because I hate being lupusy around people who know me? Or perhaps I just have a problem with people who know me? Sad but true: the thought crossed my mind "I could just donate a bunch of money and pretend like it's from multiple people."

...

I actually declare this to be too stupid a psychology for me to bother thinking farther into. Bigger point: should you be interested, people-who-are-not-around-me, you can find a walk near you here. $50 donation gets you a tee shirt. $100 gets you a hoodie. Hooray!

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!

---

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.

Lowly Intern no more

I dunno, man. I feel weird. I left work forever today with a 30 year anniversary book that the magazine made, a card signed by all the editors that says "BEST INTERN EVER" (thank you, thank you very much.) and three submissions with a post-it saying "A few of my favorite crazies to remember us by!" (They're pretty psychotic.)

I figure (now it is like 2 days later) I should give a little What I've Learned talk. What have I learned?

1. Canadians have fantastic envelopes. No, really, Canada, I commend you. Some of those envelopes are like butter. I want to keep them and touch them all the time. (That doesn't sound weird and slightly creepy, right?)

2. People who tape envelopes shut are unspeakably obnoxious

3. When interning, one's day consists almost entirely of envelope rants.

4. I am a workaholic. In that, I leave only after begging nonfiction editor if I can borrow the science book I've been working my way through, so that I can finish finding useable excerpts and email her a type-up of everything I have.

I actually do want to write more, but I am currently back on campus for a couple days being happy, if exhausted, and am running off to Maryland to cure my stir-craziness and see some friends who are running away to France next semester, and I can't think of what I meant this post to be about, except that I've been wanting to tell y'all about Canada's envelopes for, like, DAYS. Anyway, I promise I'll reflect more on my future career later.