A Moment of Personal Triumph

As I write this, happy tears are rolling down my face because I just biked two miles.  I’m sure this seems like a ridiculously small distance to most of you…but hear me out dudes…

After my second knee surgery confirmed my diagnosis of Rheumatoid Arthritis, I knew there would be hurdles, but I was still new to the life and body I inherited from RA and I underestimated just how difficult normal living would become.  I had no way of knowing I would own four canes by the time I was thirty, nor that Rheumatoid Arthritis is often treated with chemotherapy drugs…canes and chemo became my best friends and worst enemies only months later.

A year ago, I walked with a cane 80% of the time, took chemo three days a week and spent my waking hours in agony and/or vomiting.  I gave in and I gave up,  I did not see a way back from this, despite what I wrote for my friend’s blog.  My account of feeling better was basically a lie…I was losing faith in myself and faith in others.  I was in mourning for the life I had before and the life I had dreamed for myself.  Every day was a walking death.

Today I proved myself wrong.  I rode my bike four times and during the last ride, I nearly reached the mountains and returned…I may have wobbled a bit (concerning two 12 y/o boys enough to follow me a bit to make sure I would be okay), but I did it on my own.  I smelled a cookout, received barking enthusiasm from several dogs leashed by invisible fences, felt cool air on my face, waved at a teenager bringing in the mail…and I felt free from arthritis for just a few minutes for the first time in almost two years.

Wednesday, 9AM

When I compare moving to a death of sorts, way too many people are offended.  I refuse to become defensive because unless one has spent his/her formative years in a constant state of upheaval, the concept of personifying a location will seem bonkers.  In this respect–I’m bat sh*t crazy.

This is an indisputable and eternal fact: New York is the love of my life…so boys, get in line.  I rented a storage locker the other day to fill with my packed belongings and I am semi-terrified I will lock myself inside on moving day and cross my fingers no one checks it out for awhile.

I want to roll around on the uptown “6” platform in Union Square and climb atop the boulders in Central Park where my Multicultural Literature professor recited Reinaldo Arenas so beautifully, tourists would pause to listen.  I want to create performance art at midnight in Madison Square Park and run through Bryant Park on my birthday.  I want a security guard at the Met to yell at me for not having a metal clip with “M” attached to my sweater.  I want to share a cab with a stranger and for him to pull over to get my number before he drives off.  I want to bring my dog into every store I frequent.

I’m not very good with making and keeping friends…the ones I am able to grab ahold of for awhile are treasures.  Because of this, my city has become part of my identity.  I hope to be back in a year…there is no certainty, however–I expect only the unexpected.  But I can dream.

The Most Familiar/Dreaded Sight In My World

and all i see are bare walls

white clouds blind me

white clouds blind me 10/12/15

only bare walls, once again, all i see

industrial

shiny

white

a blank canvas comes to light as i spin all alone

no beginning

no end

always white shrieking–

lacking fulfillment

a soul always shrieking–

low-lit empty hollows

always, i am shrieking–

starting over again?

again?!?!

my industrial heart cannot be painted anew

he tries anyway

whitewashing my life with the salt from my tears

he still tries

Do You

My left hip is screaming at me.  On nights like this, I allow myself 60 seconds of self-pity as I dissociate from any ailing body part.  Despite this mental amputation, I cannot sleep. I lie in bed, contemplating all I need to do this week–all I want to do.  Crying was not on the menu tonight, but sh*t happens.  So I flip through memories like a storybook and appreciate the friends (old and new) who, this weekend alone, unknowingly helped me find some of the pieces I lost this year.

IMG_0138Last Friday, my partner in crime (Peter Dizozza) swung by my place in his super-efficient Fiat and together we embarked on what will forever be known as The Weekend of Magic on Candlewood Lake.  Joining us on this journey was a man I have heard about for 8 ½ years (and likely met at some point)…the ingenious Steve Espinola.  I have always enjoyed my mini breaks in Connecticut with Peter–trying out new music, canoeing, landscaping–but never had I shared these weekends with a third party.  

It was crazy awesome.

IMG_0221_2I did not think I would ever meet a composer/lyricist/musician on a par with my dear Peter, but Steve was a welcomed and welcoming surprise.  Although normally a bit shy around strangers, I was immediately at ease with this kindred spirit…and I finally figured out why: both men accept my crazy and run with it…and then run ahead of it.  The two are brilliant to the point of near insanity…a quality I admire and look for in a friend.  What can I say?: bonkers attracts bonkers…and intelligent, artistic, and insane individuals are just more fun…

Adding Steve to the mix reminded me of first getting to know Peter and realizing I didn’t need to dim my star just to fit in.  If I am running with a certain crowd who won’t accept my eccentricities, I need to keep searching for the Peters and Steves who will embrace the awkward, cerebral, creative chick who rambles incessantly and talks to her dog all day.

Then, I need to do a cabaret with them.

IMG_0161

picture by Steve Espinola

Why I’m Leaving, What I’ll Be Doing

Rheumy visit

Rheumy visit

As a victim of autoimmune slavery, I am living a life I did not want, subject to the whims and sway of a tyrant.  After my last blog, I received emails, texts, and social media messages asking my reason for leaving New York–plain and simple: Rheumatoid Arthritis.  

I do not intend to diminish the atrocity of human slavery by comparing it with my own condition–my intent is to clarify that my life is now dictated by a body plagued with a rogue immune system.  Unfortunately, my immune system is nearly as talented as myself and refuses to let up and allow me even a brief remission.  Because my condition only continues to worsen, it appears I have a progressive form of the disease…however, this could change one day if I find the right treatment.  Still, I wouldn’t wish this on anyone.

Yes, I talk about RA nonstop on social media and occasionally on this blog, but I write about my life and what is on my mind.  Arthritis is the only thing I think about 24/7–excruciating pain is difficult to ignore.  The stress keeps me up all night; packing/moving is torture; someone telling me to meditate more is asking for a toothbrush shank to the face.  Unless you have experienced years of chronic pain, you cannot dismiss it as “just arthritis” without being an ignorant d*ck.

Luckily, I have amazingly supportive parents (as they should be considering this is a hereditary condition) who want me to see a million specialists this coming year…I will embrace the plan in store because I’m tired of feeling like sh*t.  Hello nutritionist, I will eat as many beets as you prescribe.

hello peace

hello peace

Trainer, bring it!  Physical therapist…we will see.  Rheumy, please don’t give me methotrexate.  Acupuncturist, nothing new. Dad, thanks for the bicycle…I just need a basket for Delilah.  Mom…I will try not to fall through the ceiling again…especially if my brother-in-law isn’t there to save me.

I will be leaving in sixteen days (sobbing).  I will take pictures of the mountains and people falling off their treadmills at the gym…because that’s just hilarious.  I will take my niece and nephew trick or treating, participate in my beloved Jingle Bell 5K for Arthritis in Memphis with my sister and mom, and binge watch the cable shows I have not had access to for so long.

Even with the thought of rest and healing, I can’t help but die a little inside knowing I will miss my favorite time of the year in my favorite city in the world.  Fingers crossed I return healthy to enjoy Fall/Winter 2016.