2013, Rheumatism

On Being a Strange Kid

When I was a little girl I had a tiny voice.  I sounded like Minnie Mouse, and I spoke carefully.  I would take long pauses in the middle of sentences to think about what I wanted to say.  I was shy beyond belief and I can tell you from where I stand now that it was because I was afraid of people.  I was so sensitive to the world that most of the time I preferred not to open my mouth to speak.  Small events that didn’t effect my twin sister stand out in my mind as traumatic lessons learned.  Despite this fear, I always kind of went headlong into things that scared me.

When I was really little, my dad was a beekeeper.  He remembers one day I told him I wanted to be stung by a bee.  I remember this day—I wanted to be stung because I wanted to know how it felt and because he’d just bought special medicated Q-tips for bee stings and I wanted to try them. He agitated a honey bee and placed it on the tip of my finger and it stung me.

Bees don’t scare me.

Once, when I was probably about 10 and my dad was still working for Japan Airlines, we went to his annual work party.  I quietly decided that I wanted to try eating a dollop of wasabi, so I did. I remember popping a finger full of wasabi into my mouth and quietly suffering, hoping no one had seen what I’d done.

I also decided one time that I wanted to stick my pinky finger in ice cream for as long as possible until I couldn’t feel it anymore.  I took my finger out and exclaimed “I can’t feel my finger I can’t feel my finger!!” and quickly turned to sobs as I realized I couldn’t feel my finger.  I waited and nursed my little finger, judging minute-by-minute whether or not I would be a pinky-less 11 year old.

I tried a tampon before I started my period so that I knew what to do when I did start.
I commuted to high school an hour away to force myself to find comfort in a new environment.
I backpacked through Japan for 2 months by myself when I was 18 to isolate myself and push the boundaries of loneliness.
The list could go on.

Being diagnosed with R. A. is different because it’s not on my terms, and I didn’t prepare for this in the way that I’ve prepared for other scary things in my life.  The thing is, everything else has prepared me for this. I have all of the tools.

It’s a bee sting.


Urban Exotic

I’m using Instagram in the wrong way.

Of course, I don’t really believe that there is a wrong way, but I’m certainly not using it in the populous way that gets someone 2k followers.

In my particular circle and among the people I follow, Instagram is intended to be a snapshot of what one is doing or witnessing at that very moment.  I’ve noticed that no one really gives a shit about #ThrowBackThursday or #FlashbackFriday and no one cares about your #latergram. It’s about the #now.

Since all Instagram photos are assembled into profiles in succinct rows of three, the profile kind of becomes a salon-style exhibition of what someone values about what they do with their lives, which can look pretty dismal if all they post is the stupid graffiti they see on their way to work, selfies on a Friday, and images of their cat yawning.

When you look at someone’s Instagram, you gather ideas about them that aren’t based on specific images, but on the collective: the overall color palette, the amount of negative space, the number of faces, whether the images are mostly indoors/outdoors/daytime/nighttime, the richness of the saturation, whether they use filters, blah blah blah. It becomes a WORLD of images–our world.

People can interpret a lot about our lives through these photos.  Rather than thinking about how we project our world to others, I think it’s important to consider how Instagram informs our world.

If I’m being honest, I check my Instagram in the morning before I even check the news.  What I see on my feed lets me know what’s happening in New York and in cities and hamlets around the world RIGHT THEN AT THAT VERY MOMENT.  They’re snapshots–they’re idealistic and straightforward (ie: pool parties, picnics, images of a sunset, artfully constructed images of architecture…) but most of the time, ninety-nine percent of the time, they’re not particularly imaginative or artful.  I think Instagram should have more imagination and I think we should play with how it informs our lives.

Instagram affords us the ability to mock how people perceive us by intentionally deceiving them. While that may be a bit juvenile, why should the truth of our lives be recorded in rows of 3 and valued by how many people “like” it and how many of those people choose to be our “followers”? Is the point of Instagram truth?  I don’t think so at all. I think the popularity of Instagram is rooted somewhere close to deception and the bending of the truth. It’s about showcasing an image.

I’d like to augment what we’re already doing, which is idealizing our lives for the enjoyment of others, and create my own Instagram utopia to inform others in a different way.

Currently, I’m obsessed with superimposing exotic animals and jungle creatures into my photos. I use it as a way to keep in mind that there are still monkeys swinging from trees and lions hunting for food and whales singing in the ocean while I run around New York City like my life depends on it.  It’s a small way to transcend the urban environment and it’s a way to remind myself that crazy, violent, colorful, wild, wild, wildlife is thriving somewhere just beyond my zone of focus.

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There’s obviously contrast, because octopus don’t belong in the sky above the Empire State Building, but there is also inclusion by placing them in familiar cityscapes.

I want to think about parrots flying around somewhere and I also want people who follow me on Instagram to think about parrots.  I want parrots to interrupt the concrete and the glass they see all day. Maybe the gravity of our stressful and messy lives will buoy if, while we scroll through our Instagram feed during lunch, we are made to think of a hippo swimming around doing hippo things.

In my personal experience, just today a rhinoceros took the edge off the heavy decision making process involved with purchasing a houseplant.

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2013, Books, Rheumatism


Prednisone has my mind racing.  It makes me feel like a drug addict/artist–creativity pulsing, inspired like a jackhammer, with no reason save for the steroids racing through my blood stream.  ‘ROID RAGE.  Once I wished that I could take prednisone forever because it made me feel like I was on drugs to amplify already good things.  Prednisone makes the act of reading and writing feel like I’m dancing like the girl in Flashdance.  It makes words sing off the page and paintings speak directly at me in a way that feels as straight forward as a bass drum.  In other words, dreams come true.

A friend of a good friend of mine, a person I’ve never met, has been emailing me music for the past few days.  I’ve complied this playlist from him that I’ve been listening to non-stop for the past 48 hours.  I’m playing it right now, actually.  It’s all kind of ethereal, weighty, swirling drum&bass melodies that have turned into the soundtrack of my life for the past few, rather poignant days.  It also kind of places him in my life in a weird way because I’ve never met him, but I’m kind of drooling over this music.  It has lifted me; kind of a unique circumstance where someone I’ve never met has supported me (unknowingly) in an important way.  Anyone wanna dance??? I’m dancing in my chair.

The mutual friend I share with this guy, a really good friend of mine, gave me the book Tiny Beautiful Things yesterday.  (I see you Caido, I’m talkin’ boutcha.) Anyway, it’s incredible.  What a difference honest words and swirly beats make.

Also reading Leaving the Atocha Station and The Flamethrowers.

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I didn’t set up this photo op.  I actually took the first shot from far away because I didn’t want to unplug my iPhone from the stereo, and then I realized how beautiful it looked.  Not my apartment, unfortunately.  Last day of housesitting, back to the man cave tomorrow. Think I’ll take a bath.

2013, NYC, Rheumatism

Champagne for Rheumatism

Yesterday I woke up an hour late and subconsciously sabotaged my morning in order to avoid the gravity of an important doctor appointment.

I arrived sweaty and tired, and my doctor asked how I was feeling. I calmly began to tell her that I had been in quite a lot of pain for the last week.  I could see a level of understanding in her eyes that both alarmed and comforted me. She told me that she was surprised I wasn’t suffering a bit more.  My blood tests look fantastic, aside from the fact that they came back positive for 3 different indicators of rheumatism. The finality of the diagnosis was jarring.  I listened and wondered why I didn’t prepare myself this morning and I felt a sudden urge to sob.  I held her eye contact with my teary eyes; I kept it together and when I left the hospital I cried a lot.

I think it’s fair to admit that a large part of me hoped that my condition would have been something silly like eating too many bananas, or high amounts of aluminum in my blood from the aluminum bracelets I wear every day.  I’m not kidding–a good part of me blamed aluminum.  I also kind of knew it was something more serious.

After I left the hospital I went to a puppy store and played with puppies.

I spent a day thinking a lot and I’ve settled on a thought: there will be more good in my life as a result this. I’ve found a new fragility–I feel more open and vulnerable to the world, more willing to accept love and help.  My mind is inviting me to be more in-tune with my body, to make decisions governed by health and living the best life rather than the most exciting life. It also invites more writing and reading, more champagne and art and cellos and drum&bass and dancing and fine dining and good love.

2013, love

An Event Next Door

Last night I got a text from my neighbor inviting me to a party he was having.  He said, “oh btw I’m engaged.”  And he said it just like that. I can’t say it wasn’t surprising since a few months earlier he was single and, I suspected, a little bit interested in sleeping with me.

I bought an engagement card on my way home and scrolled tender wishes for a romantic summer and a fun engagement.  I did my best to convey support and excitement for a couple I had no knowledge even existed.  I hadn’t seen my neighbor in months–I figured it was the winter time and it was his rigorous last semester of law school.  I figured I’d see him as I had last summer–late at night for beers and BBQ.

I let myself into the party and immediately met the mother of the bride who introduced me to the bride-to-be.  In these few moments, I impressed myself with my social grace: no stumbling over words, saying all the right and lovely things, striking the right balance between gushing happiness and  I’ve-never-met-you-before distance.  SHE WAS GORGEOUS.  I’m saying this, and mentioning my impressive social skills because it really caught me off guard.  I could have stumbled over her beauty, but I didn’t.

I spent the evening talking to her sister, who told me the romantic story of how her sister met my neighbor so quickly, how they both broke off their other relationships to be with each other, how he proposed one random evening after they had seen Jurassic Park.  Apparently they had been inseparable since they met–she slept over at my neighbors almost every night yet I had never seen or heard of her.

I saw them together across the garden and it was real.  Their love was calm, their excitement was infectious but not assertive, and their future seemed to stretch out vibrantly before them.

I can’t believe that a love like that happened right next door to me.  It happened like any major event; like a lightning strike, but quietly and right under my nose. It’s affecting in a similar way, too.  I feel the guilty/grateful “it-could-have-been-me’s” like we do when someone dies.  I feel that way as if it could have been me who fell madly in love with the right person, entertaining all of the same questions that one does after an event almost happens to them.  If I had just left the house 2 minutes later… if I hadn’t missed that train… maybe if I had lived just one door over, lighting would have struck me down, instead.

2013, NYC

Corrupting the Youth

I haven’t posted in years.

I’m considering taking up blogging again because I’d like to use it as a platform to share with more depth than I allow myself on Tumblr.  I’ve realized, upon logging in a few moments ago, that this blog has become a time capsule of myself.  The “LOVE” page, for instance, is completely hilarious to me.  I find it endearing, like seeing a child you used to babysit who has since become a young adult. Revisiting my younger self make me reconsider invigorating this blog–I’d quite like to keep this time capsule as-is rather than corrupt it with my older, more revolting and less idealistic mind.

The truth is, I’m grasping for a way to stay sane because I can’t run anymore, and I can’t binge on carbs–both former coping mechanisms. I might have an auto immune disease, but we’re not sure.   What I do know is that I have something, some kind of illness that will require a major lifestyle shift and I’m desperate to make it as graceful as possible.

Decidedly, I’m turning to culture as a form of escapism.  I’m going to read books, write, make art, go to the ballet, the opera, the theater; I’m going to watch movies, go to workshops, talks, conferences, museums, galleries, open studios; I’m going to make salads in the same way that some people make cookies (inventively and constantly) and when I feel like stuffing my face with food I’m going to buy a basket full of fruit and when I feel like running I’m going to dance.

I have an important doctors appointment tomorrow with a rheumatologist.  Hopefully I can get a diagnosis and some medication for my swollen, achy bones.