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.

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.

photo 1 photo 2

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.