I remember mooning in the mirror at the mock sapphire studs my grandmother got me as an eighth birthday present. Even though the piercing gun hurt like hell, the pain was forgotten once I got an eyeful of that cubic zirconia sparkle.
My interest did not extend to the dresses and saddle shoes she also bought me which could be destroyed before I even grew out of them. I could tear the sole off of a pair of shoes in three months, I played so rough and this was way before "Made in China" (Well, not way before)
After my tomboy years, I entered the hell of premature physical maturity and grew several inches out without growing up.
This had all sorts of negative ramifications on my social life and certainly did not make me want to draw attention to myself by dressing nicely.
In fact, I didn't realize I actually loved clothes until I became a pescetarian in my early 20s. When weight fell from my frame and clothes finally started fitting my petite frame properly, I began buying and wearing them with great enthusiasm.
Babydoll dresses, peter pan collars, a-line skirts, mary janes, my interests extended even as far as lolita, a Japanese fashion known for girls in dresses that recalled the freeness of being young.
It was like I was going through my second childhood as a girl this time.
I still remember what I was wearing when I started to feel sick. It was an Alice in Wonderland print, gray with black piping, with the suits of cards (aces, hearts, jacks, queens) subtly patterned down the bodice and skirt.
It was fall in Chicago and I was walking home from the near west side.
My heart started to race on and off and I felt a little cold. At the time I ignored it, I was much too busy with school to be sidelined with a little flu. But my flu got worse and worse until I could barely move. Out of decency I tried to brush my teeth before I went to the emergency room, but I was so dehydrated the toothpaste wouldn't foam up.
I'll never forget what the doctor said to me after they called my blood work back to him, stat. "Are you HIV positive?"
My flu had wiped out my white blood cells. And after my apparent recovery, my immune system, frightened by its close call, went into overdrive and produced some nasty antibodies against my own peripheral nerves, presumably since they happened to look a little like the virus.
For my body, this was the last insult necessary to aggravate out a genetic disorder that had been lurking quietly in the background, unbeknownst to me or anyone else.
All of this was some rare Mystery Diagnosis shit and no one actually figured it all out until many months of terrible frustration and confusion had passed. Long after I'd had to move from Chicago back to Cleveland in defeat and long after I realized my life had undergone some type of fundamental shift.
On a typical day I snake my way to my bedside table to take my morning medicine, ten pills. Without them, my shoulders are too painful to bear my weight and my blood pressure is too low to sit up directly. If I do have to run for the bathroom by chance, my heart beats wildly as it tries to supply my brain with enough oxygen for my ill-considered endeavor. My immune system has killed off quite a few of the nerves responsible for telling the blood vessels to squeeze and move my blood, so the burden falls to my heart.
My joints ache, my blood pressure is low, my GI system is set on "maybe I will digest what you eat, maybe not." At first my joints were no trouble at all, but slowly they evolved into their own problem.
People with my genetic disorder, Ehlers-Danlos Syndrome, are born with problematic collagen, the protein that gives strength and structure to all the bones, tendons, organs and tissues throughout the body.
In my case, my father gave me one copy of a good collagen gene and my mother gave me one bad one. That was all it took. I don't make enough good collagen to reinforce my tissues and because of it my tendons and ligaments are weak and my joints tend to shift in and pull out of their sockets.
This hurts.
When I tried to get a part-time job, I made it as far as shopping for the interview and landed in the hospital for five days.
Long after most people would have succumbed to sweatpants, I wanted to wear a sweater dress. I looked up how to do a smokey eye so I could debut it at Occupational Therapy. I finally tamed my brows which had long looked like two ratty mink throws.
"Life's not worth living if I can't be beautiful,"** I told my mother, straight-faced.
A few days before I went to see a renowned geneticist in my disorder, I got in the mirror at my sister's apartment where I was staying, and cut off all my hair with craft scissors so I could grow in my natural texture.
At one point my physical therapist had to tell me, "You know, it would probably be better if you wore pants or shorts."
"Oh," I said. I had on tights and a miniskirt.
It wasn't until I read an insightful piece on xoJane.com by a woman suffering my same disease that I understood why I dragged myself out of bed and in front of the mirror to pluck my brows, line my eyes, arduously style my unruly hair, and put on eight layers of clothing in accordance with the Japanese mori girl style just go to my neurologists' office.
Fashion reconciles me to me a body that I otherwise hate and fear.
And it reconciles my body to the world.
I love myself. I hate my disease. Fashion is my way of telling you a kind of story about myself as well as taming rebellious my body.
Long gone are the times when I would have spent hours prowling the city in my busted Chinatown mary janes, riding the trains for fun, listening to Miles Davis.
My life now is painfully narrow. But I need to be happy with it.
So, what is Clothes Mouse, other than the nickname my father gave me based on my exploding closet?
You might find the occasional alteration, but beware, I'm a sixth-rate seamstess. (Sorry, Nana, I know you tried.)
You'll find probably terrible pictures of my outfits. They will be terrible because there is no else to take them pictures but me and there is nothing to take them with but my iPhone**.
But mostly you'll find commentary on beauty, fashion, feminism, race and disability. Please look to forward to it.
**With apologies to Howl of Studio Ghibli's Howl's Moving Castle
**Also, Instagram needs to work on filters that don't make Black people look like Two-Face from Batman.
