Invisible Illness Awareness Week

I don’t consider my MS invisible anymore. I barely noticed that there could really be anything wrong about my life. Generally because I’d only received, from pediatricians to Medicare “you just need to lose weight Ms. Fattyfatty Burgerpatty.”

Fair enough. I have after eight always needed to drop a pound or ten; only hearing from doctors that all of my problems were related to my weight was an underhanded but brilliant way to prescribe eating disorders.

I only continued to gain weight. Peers seemed unnavigable but there were always desserts. Neurological symptoms began to unmask in middle school. I just needed to lose weight.

One of my first after-Dx (@28yo) neurologists left in view a pad with “OBESE” scrawled in allcaps across the top page. I had just lost 75lbs.

I changed neurologists but found that none of them could journey past my pounds. My neurologist now is in a different city and is incredible.

I’m not able to maintain injured astonishment anymore. I no longer have the luxury of anger. I have had to accept that I am not lazy because moving my body is too difficult. That it’s okay to leave dirty dishes in the sink. That it’s okay to have a high level of disability and find happiness.

What a cruel trick on yourself to not seek joy.

I could (and still someday may) list every one of my Sx. Let’s instead take a hard left into a generally chronological list of the things of which I am proud and should keep remembering:

First in-a-book published poem (high school)
Published multiple times in college Literary Magazine
I spent a college summer in Italy and at nearly 300lbs walked miles across countryside and major city.

Had a small exacerbation in my Italian dorm, then still climbed to the top of some of the world’s largest cathedrals. The Byzantine narrow upwards-tunneled stairs are a badge of horrific physical honor. I got to look across all of Florence in Brunelleschi’s Duomo. I climbed to the top and walked and fell down on the roof the second-largest cathedral in the world. ^pic^
I’ve been to Pompeii, Rome, Venice, Florence, Milan, Urbino, Orvieto, Pesaro, Capri…
… and in Padua I got to see the late Byzantine/early Rennaissance fundamentally famous works of Giotto di Bondoni (Time’s Man of the 13th Century!) in the Scrovegni chapel.
Learned more about modern art and decided Duchamp’s signature from his most (in?)famous work of art (The Fountain) would be my second tattoo.
Oh and of course the college degree in (you guessed it!) Art History with a minor in Italian
Went to the Washington, DC Rally to restore Sanity and/or Fear (Stewart, Colbert)
I’ve made a 829′ jump off the tallest building in Las Vegas.
I made it down and up those Dali-esque stairs at Amicalola State Park
I married my best friend at the Supreme Court of New York City then honeymooned on Broadway. We just celebrated our eighth wedding anniversary and I may sometime write this incredible movie-ready romance.
I got to ice skate at 30 Rockefeller Plaza
I worked on design for a project at the state museum
I was design lead two years for the local chapter of NAMI on a regional fundraiser.
I designed a billboard in downtown!
We got to meet Daveed Diggs at a clippng show in Chapel Hill. Shit, omg, Daveed Diggs. You guys. Use TouTube; if you don’t know, now you know.
I went whitewater rafting.
I got to create logo and t-shirt designs for SC Pride
I was design lead on two annual fundraisers for Protection & Advocacy for People with Disabilities.
My wife and I received from a dear friend TICKETS TO HAMILTON.
I got to create the logo for the Yoga for Everyone class/community
Maintained 100lb weight loss for 8 years (until chair)
USC TED talk speaker
I’ve had poetry published in the Jasper Project and selected for community projects (poetry on city buses!)
I’m creating book covers for independent authors
I performed in Martyna Majok’s Pulitzer-winning script about disability, Cost of Living. I was Ani.
Please enjoy all of the relevant but unorganized images below: