Crohn's Disease

cardigans, cashmere, and being the “perfect” size 00.

As a child of the 1980s, mail order catalogs were my primary source of ideas and inspiration. JCPenney and Spiegel catalogs served as dogeared reference bibles for All the Things I Coveted, and Current catalogs for stationery and paper related obsessions. I felt a jolt of elation when a new one came in the mail, heading straight for the blue and orange plaid family room couch to curl up and devour its contents. The massive 500 page Christmas catalogs often came in August, just in time for back to school shopping. As the crisp fall air moved in each year, I was swept up in fresh tartan pleated skirts and dresses, corduroy pants, bright sweaters, and patent leather shoes. Colorful, New England preppy casual clothing makes me happy and reminds me of those simpler days. Online shopping just doesn't provide the same thrill.

My emergent fuddyduddy side is coming out typing this because back then, things were high quality, made to last. I only recognize this now because most clothing items I buy barely last a year. I regularly use a massive monogrammed 25+ year old beach towel from Lands’ End, still in amazing condition. An oversized red thermal J. Crew waffle knit shirt from the same era has held up valiantly, despite a few holes at the cuffs, living out its retirement in my pajama rotation.

I got my first cashmere sweater as a birthday gift from my family in December of 2002. It was a twin set, also a first for me. It seemed so luxurious, almost excessive to have not just a button up cardigan, a wardrobe staple, but a short sleeve sweater too that matched. The twin set is a classic retro look, and turning 26 felt like the right time to own my first real grown up investment piece.

I remember reading in the Lands’ End catalog about the specialness of their cashmere, the stories of how they trekked all over the globe to get the best goat wool from the finest regions. I never finished reading any of those pages, but the overall impression was that they seemed to really care and have integrity in their process, although they could have fooled me because I knew absolutely nothing about goats or cashmere. I chose a warm camel color that was unusual for me, more subdued in contrast to my typically bright palette.

The sweater came at a time of extreme and rapid health decline from my disease. I was the thinnest I’d ever been in my adult life. Unable to keep weight on, I dipped down to 85 pounds at my lowest point, weighing the same as I did when I was first diagnosed at age 12. It was the smallest size they offered, an extra small, and at my most dire, it hung off my dying frame. My world was crumbling around me at a dizzying pace, and the soft, cozy sweater set brought me comfort and cover in a perilous and exposed time.

My now ex-boyfriend recently asked, were you always smiling in photos when you were 85 pounds? It was an interesting observation. Yes, I think I was. We discussed how photos, though they can be a helpful reference point and anchor in time, certainly do not always reveal what’s truly going on. Even though I had zero excess on my frame, I was really critical of this body. I had lost weight very quickly. When I stood naked in front of the mirror my eyes would focus on the skin hanging from my frame and my distended, round belly, malnourished and crying out for help.

My Dad put a bubble wrap boat in the bathtub for me because my bones were poking out and painful. All my systems were failing- I hadn’t had sugar in a year following a very specific diet, and yet my teeth were rotting. My body was inflamed; I fought a host of infections. Clothes hid the dramatic and hellish rollercoaster my body was experiencing, allowing me to present a rosier picture to the world while everything else spun completely out of my control.

My disease was completely on the inside, which often caused confusion for others, and anxiety and stress for me. “But you don’t look sick!” is a common refrain. Oftentimes the better I looked, the worse I felt. Skinny, with clear porcelain skin… what’s your secret? They’d say. Trust me, you do not want this secret.

I remember sitting on the couch that birthday evening in my parent’s living room in Austin, Texas where I was staying for a few months in between apartments, talking to my dear friend Angel about clothes among other things. She cautioned me against buying too many things at my current size, double zero (00), because I wouldn’t be there for long. I have to admit there was something exhilarating and thrilling about being this size. I had become so good at ignoring the constant pain, and buying clothes, focusing on something external, pretty, and easy brought me much needed temporary pleasure. Despite my glaring miseries, there were things I liked about my dying body. It was a “perfect” size - for once in my life, I could wear whatever I wanted, and there was a strange freedom in knowing everything I put on would fit.

The high cost of being this size didn’t outweigh the desire to live or find health once again within my grasp. The mind does strange things in crisis though, and collecting size 00 and extra small clothing was an ephemeral straw I clung to as long as I could. When I'm a certain size, I never think I will be anything but that size, and there was something pure and stripped down about this one. It was a relief in a way to have almost nothing left, an absence of a body that brought me so much torment.

I hung on to those cashmere sweaters for a long time. They made it miles down the road into my North Carolina years, expanding gracefully as I expanded, and were well loved by both the moths and I before we finally parted ways. My orange velour retro designer leisure sweatpants were the last of the tiny things to go from that period. They reminded me of Bert and Ernie’s shirts from Sesame Street. I smiled as I packed them up along with other extra small items to sell at an upcycle clothing shop. Angel was right- that moment in time was temporary. I didn't know then just what a good thing that would be.

Blowing out the candles on my special homemade birthday cake
wearing my new sweater set, Dec. 3rd, 2002.

Birthday celebrations with my friend Angel.