Posts tagged ‘autoimmune disease’

Role Reboot

It occurred to me that I linked my essay “The Year I Was Diagnosed With Lupus” to here, but that I never actually told you the circumstances of how I started reading Role Reboot and why I was so interested in publishing with them (and have been interested in doing so for the last year).

I first discovered Role Reboot after I started reading Emily Rapp’s Little Seal Blog. I believe I found Little Seal after Taylor Swift released her song “Ronan” about a different Ronan. I loved Rapp’s writing, and so I googled her and found her first book, and then the essays that she has published with Role Reboot and other places, as well. I liked that Role Reboot didn’t shy away from the nitty gritty of life, because that is what life is for many people: situations that you wish were different but are powerless to change.

I like reading about people who have atypical experiences. In Star Trek, the Vulcans say, “Infinite diversity in infinite combination,” and I believe that to be true of people, though there are experiences that are universal, each person experiences things differently. Sometimes, media can be so monotonous that it feels as though the same things happen over and over and over. To find a place where people were writing about things I’d never experienced was an incredible joy.

My experiences of life have also been quite different. Most 24 year olds don’t undergo treatment for their third autoimmune disease. Most 24 year olds aren’t incapacitated by their symptoms. So a year ago, when I first wrote things that didn’t quite fit with my memoir on chronic illness, my first thought was that maybe they were things that could be adapted for publication by Role Reboot. Almost a year later, I had an essay, not one of the pieces I’d written a year earlier, but an essay that worked on the same themes as the pieces of a year ago, published by Role Reboot, and I was ecstatic. Chronic illness isn’t a subject that many journals will broach. It is depressing. It is difficult. It is fraught. And it is scary. But I didn’t think that that would be a problem in this case. I submitted to Role Reboot first, and told myself that they would reject it. But if they had rejected it, I had no idea where else to submit it with any hope of publication.

When I heard that Role Reboot had accepted my essay, then entitled ‘The Lupus Year’, I was ecstatic.

I am so happy to be back to feeling like a writer, and I am hopeful that this coming academic year will bring more essays published, and perhaps… Perhaps it will even bring a book deal (I HOPE).


The Year I Was Diagnosed With Lupus, my essay published by Role Reboot.

I was 23, and a newly minted Master of Fine Arts, when I left my family in New York to join the Creation Care program at Camp Mokule’ia in Waialua, O’ahu, Hawai’i. Creation Care was an 11-month-long program, and one of a number of faith-based internships run by the Episcopal Service Corps. The program was everything I’d wanted, and though I was terrified to leave my family for such a long period of time, I tried to remain focused on the fact that I would be living in a tropical paradise for 48 weeks…

Continue reading my essay over on Role Reboot!

Butterfly Perlers and Guinea Feathers

Photo on 2-23-15 at 3.05 PM

A while back, I bought a SpiritHood. (you can read my post about my first hood here)

As some of you may know, I suffer from three forms of autoimmune disease, and two of my diseases cause hair loss. Since I’ve been living with hair loss, as well as temperature regulation problems, I was looking for a way to have fun while still keeping my head warm. I have a number of hoods now (wolves, coyote, and a lion[!!!!!]) and they’re a great way to stay warm while also staying wild.

The community of SpiritHoods wearers is a dynamic, supportive, and fun community, and they’re very creative, too! I discovered that the company used to sell feather charms for the ears of the hoods (there’s a little tag on the ear so that you can attach a feather), but that they don’t anymore. I was bummed! But the first person in the Tribe (SpiritHoods fans are called the Tribe because we’re all animals) to follow me on Instagram said that she could make me a charm. I was so excited!

The envelope arrived on my birthday completely torn up, and with no charm inside. I got in touch with her and she said that she’d make me another charm and send it to me, and then showed me a picture of this charm, which has a butterfly perler. Butterflies are a symbol of lupus, and they’re beautiful! This charm arrived safe and sound, but I didn’t get a chance to put it on one of my hoods and wear it because my lovely Zoey Makana girl was not enthused about my Spirithoods! I’m just starting to wear them again, and she’s starting to be convinced that I’m not an intruder and that they’re not animals invading her territory!

I can’t wait to get a few other charms for my other hoods!

If you’d like to join the Tribe, get in touch with me so that I can give you a code that will save you $15 on your very own hood!

First/Fourth Drafts

Recently (within the last two weeks), I finished the draft of my thesis novel.  It’s not entirely appropriate to call it a first draft, but it is in a way.  See, it’s the first full, completed draft, but in reality, the first half of it is more like a third-ish draft, and the second half of it is a first draft.  I have to revise it.  I have to get it to my second and third readers.

I can’t believe graduation is so close.

I can’t believe that I don’t have any clue what I’m doing next year.

I can’t believe how well ballet is going.  Oh, I might have forgotten to mention that I started dancing again this past September (I’d danced for many years, but had to stop when I injured my knee–it never healed due to the autoimmune disease, but now that that’s getting under control, it’s been great).  I’m doing pointe, which I was told would never EVER be possible in a million years (haha! Take that!)

I keep worrying about what’s to come, because I’d love to just write all day and night and be really artistically and creatively fulfilled, but I also know that I’d like to eat, so I have to figure out what that balance is going to be.  Life is everything and nothing like I thought it would be right now, but sometimes, I find these moments of peace, and I wonder what all the worry and stress and craziness is for, and then I have to go back into the craziness, but the moments make me feel like I’m right where I should be, and that everything will end up the way it’s supposed to end up.  And I try to remember that when I feel like the world is wrapping a noose around my neck and I can’t breathe.  I finished a draft.  The novel didn’t spiral out of (my) control and turn into a never-ending epic saga.  It’s done.  I feel great and strange and light.  I’m trying not to look for the falling anvil.

Maybe, just maybe, it’s time to let some stuff go.  Maybe TTOT will be done this year.  Maybe it will never be done.  I want it to be done, but maybe that’s just not in the cards.  Maybe I should focus on the picture book drafts I haven’t been doing and the novel that I can’t finish because I don’t have a master copy, and the memoir, and whatever writing project comes next.  And READING!  I can’t wait to start reading and doing book reviews again! <–I think I’ve reviewed exactly one book on here; this will change this summer after graduation.  Promise!

Sometimes, I feel like my life is a fourth draft.  Maybe that’s a great place to be.