Dear Lily June,
As human beings, we live in the flimsy structures of our fleshy bodies. Our hearts, like birds, are protected only by a cage of ribs; our minds, like yolks, sit inside the bony eggs of our skulls. It is a system designed to be fragile and frail. We are not built to last forever.
In my youth, I felt as if my body was invincible and thus, I treated it as if it were invisible. (In fact, your Grandma Raelyn might recall to you someday how I used to hide my body, as a toddler, under my ratty baby blanket, transforming myself into a makeshift ghost and earnestly believing no one could see me when I was under there.)
When my own Grandmother Mary began the comparison game as I hit my early teens, wondering why I couldn’t “try to be beautiful” like my sister–your Aunt Loren–I detached my faith from my body entirely. I thought, in that time, there were two paths a woman could walk: beautifying the palace of the body or retreating into the sanctuary of the mind. I chose the latter, burying my unpainted face in books. For the most part, I never considered how I’d turned my back on my body. Unfortunately, the body will not be ignored forever.
It was in my first year in college that my body truly began to break down. It all started when I went to brush my hair and my fingers slipped over a smooth spot. It didn’t register right away what I was feeling–could there be something stuck in my hair, I wondered, making it feel so oily and smooth in one particular area?
What I was feeling, I would learn later, was a bald spot. I was nineteen and in reasonably good health. Nineteen year old girls just don’t go bald, I reasoned. It must be “the big C.” I went into a wet chicken panic, throwing myself around dramatically, sure I had been granted a death sentence by my own hairbrush. I’m glad you didn’t meet that version of your mom, Lily. It would have been a bad time to know me.
It turns out it was my first bout with alopecia areata, an autoimmune disorder where the body attacks its own hair and follicle cells as if they were the cells of a disease. My hair fell out for my first year in school in tufts and patches, though I never did discover, half the time, where it went. (I never felt as if I were leaving behind clumps the size of sewer rats in my shower, and yet, my scalp begged to differ.)
What I should have gotten was that my body was like a puppy–wreaking havoc in a desperate attempt to entreat me to pay it a little attention. Instead, I retreated deeper into my mind, trying to control my environment if I couldn’t control my body within it.
It’s around this time I began compulsively making lists (a symptom I would learn later was fairly typical of OCPD). It was a way of organizing the disorder I felt with the stress of college. Poverty kept me from living in dorms after the first year; I took two part time jobs to afford books and incidentals, and I took two buses each day–one to and one from campus–in order to make my three hour round-trip commute to save on living costs.
I was not your typical college kid, drunk on freedom or just, as so many are, freely drunk. One of the first in my family to even go to college, I was saddled with the responsibility of my own future early on, taking out loans I had no earthly business being granted to pursue a field I had no earthly business studying if I ever wanted to pay those loans back: English.
And so I tried to control the breakdown of the body with a buildup of vocabulary. I tried to hide my pain under a mountain of to-do items revolving around work and study. I tried, even with my hair falling out in patches, to again ignore my body. Unfortunately, the body will not be ignored forever.
Another hit came the summer I turned twenty: the sudden urge to go to the bathroom more and more frequently. And then pain, leading up to and after the release. And then the pain progressed from a light nagging to a hard knocking at the door of my nerves. And eventually, it couldn’t be ignored any longer, and I assumed, as did my doctors, I had some kind of UTI.
Over and over for months that summer I was put on one after the other course of antibiotics. Urinalyses determined there was no bacteria in my bladder, but the pain and the frequency persisted no matter how much cranberry juice I downed by the gallon. I got up two, three, four, twelve times a night to pee, and the resulting insomnia got me into a bad love affair with caffeine.
I’d drink coffee and tea to stay awake during the day, but it seemed as if that exacerbated the pain, keeping me up more at night. Drink. Pee. Pee. Drink. Rinse. Repeat.
After a series of invasive tests–trans-vaginal ultrasounds that turned me into a human joy-stick, a cystoscopy that slithered a camera snake into my urethra and stung about as much afterwards as if I’d been bitten by it–I had another diagnosis under my belt: interstitial cystitis (sometimes abbreviated IC).
Like alopecia, this was another autoimmune disorder. Like alopecia, my body’s immune system was launching an arsenal against healthy cells, this time in the lining of my bladder, causing discomfort, embarrassment, pain, and a feeling of being imprisoned in my own, well, self.
For the second time before I could even legally drink, my body had betrayed me. My hair–called a woman’s crowning jewel–had strands that jumped like a suicidal lemmings from my scalp. My bladder–an organ that I would have been as accurate pinpointing the location of before all this as an American would be pointing out the location of Uzbekistan on a map–was cracking like chapped lips.
I felt as if, in all ways that one can, I was falling to pieces.
Things got better, Lily, as they’re apt to do in this life, even if you don’t do anything. The universe can only rain on so many of any one person’s parades before the clouds shift direction.
Fast forward with me for a minute. So successful had my lists been in keeping the chaos neatly arranged that I not only graduated from the University of Pittsburgh summa cum laude, I was my major’s graduation speaker. I got into graduate school, moved to the deep South, met, fell in love with, and married your dad, lived through a tornado (another story for another time), fled back up to the north in fear, and made real a life-long dream: having you.
Pregnancy was to be an awesome adventure, and suddenly, I couldn’t ignore my body even if I wanted to. My flesh had become a rental property, and as the landlord, I could suddenly see how worn down the grounds were. It started, for instance, with the progesterone scare that made me question my ability to grow and maintain a healthy placenta. I had to be afraid my bone house might harm you.
After we jumped through that hoop, though, for a while, I was granted a blissful reprieve. In one of nature’s kindly little flukes, my second trimester saw my IC in remission, at least in terms of pain. (As my expanding uterus put pressure on my bladder, nothing could stop the frequency.) Less pain meant better sleep, and a heaping helping of feel good hormones made the laughs come easy.
Lily June, I will never forget the extraordinary flutters of your movements inside of me–the way you would tickle my tummy with your hiccups, your hilarious assault on daddy’s face when he leaned against my womb to hear you and you let out the full-force of your kicks against his cheek. For the extent of the middle part of your stay, you changed my body from a prison I was trapped in into a secret garden I felt privileged to tend.
That magic made the harsh snap back to reality that much harder to take when things started to go so wrong so quickly. The preeclampsia, the “failure to progress,” the resulting C-section: now my body was failing you when it was failing me. I spent the first weeks of your life looking down at my flabby flesh and my Cesarean scar and hating the ways it had let us both down, wanting to punish my body for being fallible, frail, the damaged shell of a person. But then, I was the one who had ignored it for so long, even when it was screaming to me that I needed help, that I had to cut back on stress and bad habits, that I had to open my eyes and be a human being.