First, I do apologize for having taken so long to update! Work has been exceptionally busy, and I’ve had a few mishaps in the meantime. My second car, Zuzu, is now a goner. My new car is Snow, named from a book I’ve been enjoying called A Game of Thrones from the series A Song of Ice and Fire by George R. R. Martin. It’s a fantastic series! I had forgotten how much I truly enjoy fantasy. Growing up, stories with dragons and sword fights were my favorite. I wrote pages and pages of poetry using pronouns such as “thee” and “thine” and adding e’s to the ends of certain words to make them look medieval. Rather than posters of 98 BackSync I had pictures of Guinevere and Lancelot adorning my walls. It’s funny how years of endless pressure can make one stuff away those daydreams. And by funny, I mean awful. Children really can be terribly cruel. Then again, do people ever really get better?
At any age, there are still standards called “norms” that the majority seems to expect from the whole. In every generation there are things which are and are not acceptable. I remember when my grandparents saw my first tattoo. They were horrified! It’s comprised of two small flowers, a pink phlox and blue forget-me-not, and in a place easily hidden. But for their generation, tattoos were for lower-class people (in their opinion). My grandfather was in the Navy, and he even thought the military tattoos were despicable.
“What will you tell your children?” they asked. “What will you think of that when you’re our age?”
I may or may not still like it, but it’s certainly a part of me now. Even after losing the entirety of epidermis covering my tattoos, they all stayed. And well. For me, my tattoos are a physical rendering of events and people that changed my life, much like scrapes become scars. Even if they weren’t on my skin, they’d still be with me. About a month ago at our family reunion, I unveiled my latest and largest tattoo to the rest of my family when we went swimming (though it is actually two years old). It’s a beautiful half back piece of a phoenix that my artist and I designed after I got out of the hospital. Rightly so, it signifies what I experienced in 2008. Somehow, I was a little nervous about what everyone would think of me after seeing it. Then the very same grandmother who had once shunned my tiny flowers was the first to tell me I was silly for being self-conscious.
“This is just how your generation expresses itself,” she told me. “We love you no matter what. Now go get in the pool!”
You have to hand it to wonderful grandmothers. They can make everything better with tight hug or a cup of tea. It also goes to show you that despite the strict standards we place on ourselves in society, those standards will always be changing and when people love you they will be willing to change how they think about certain things, too.
I decided it was a good time to share the first story I wrote about what happened after my hospital stay in 2008. In summer 2010 I took a world literature class and had to write a true short story about me. What emerged was a story about changing the way I viewed myself and the world around me and about finding new standards to live by. I hope you enjoy it…
A woman I work with is reading a book right now by an author who takes true murders and develops a story around them. My coworker was telling me about the particular book she was reading, based on a husband who murdered his wife and tried to make it look like a suicide. The detectives said it didn’t appear to be a suicide because the woman looked rough. She hadn’t dressed for the day or even put on a stitch of makeup. According to the detectives, the vast majority of female suicides involve women who have practically made themselves ready for the viewing. They put on their nicest clothes and jewelry. They fix their hair and perfect their makeup. While men tend to commit suicide in ways that distort their figures, such as jumping from a building or shooting themselves in the head, women tend to take their own lives more discretely, with pills or by slitting their wrists
The first time I saw myself in the mirror at the hospital was daunting. I had made jokes upon arrival about my swollen, blistered lips and bloodshot eyes, claiming to be the zombie version of Angelina Jolie, but three weeks later as my eyes were finally able to look at my reflection, I was… even now, words can’t describe that feeling. Crestfallen? Disappointed? Horrified? Yes. And no. Mostly, I just didn’t know who was there on the other side of the glass.
I had died my hair black three days before I went into the hospital for several roles I would be playing in the student theatre that spring. I had loved the slight blue sheen my locks had in the sunlight, making my cerulean blue eyes really pop against my pale skin. Well, I had thought it was pale. In the mirror that day in the hospital, my face was still bright pink with new skin, but much of the rest of me that had begun to heal made my previous complexion pale in comparison—pun intended. The doctors told me I wouldn’t be allowed in direct sunlight for at least six months in order to let the melanin come back into my skin. The dark hair now just looked grotesque against the splotchy pink and white backdrop of my sunken face. The eyes were still bright red and swollen, and my lips were entirely black from scabs. My grandfather continually referred to me as his “little Elvira.”
Without going into all the gut-wrenching details, I will explain a bit about what brought me to the hospital. I was attending school in Dayton, OH at the time for theatre, and ballet classes paired with the late nights, the cold, and many other stressors had brought up a flare of what I now know to be lupus. At that point, we just knew that all my joints were swelling like crazy, and I had begun treatment for rheumatoid arthritis. Three weeks before entering the hospital, I started a new anti-rheumatic medication, and an allergic reaction to that is what caused my demise. It had happened literally overnight. One day I was fine, but I went to bed early, exhausted. Then I’d thrown up for eleven hours and gone straight to the emergency room the next morning. I’ll never forget the receptionist’s reaction when she finally looked up at me from behind her desk. She had already asked my name and social security number, but when she glanced up she simply said, “There’s a wheelchair right here around the corner. Come sit down, and we’ll get you in a room.” I was admitted immediately.
The more common version of what I had is called Stevens-Johnson syndrome, affecting less than ten percent of the skin and the mucous membranes. There is no cure, and the only experimental drugs they have to possibly help it work its way out of your system faster with an treatment that costs $15,000 per IV bag. I had two. I would rather have bought a new car, but hey, how could I drive it if I was dead? Of course, me being me, I couldn’t just have Stevens-Johnson; no, I had to get the version that puts you on the other end of the scale: toxic epidermal necrolysis. Literally the cells that hold your dermis and epidermis together die and your epidermis has nowhere to go but off. It also can affect internal organs, and it leads to more severe ulceration and blistering in the mucous membranes. In less than a week I had lost 85% of my skin, the clear “eye skin” that covers the corneas, and 30 lbs. (Trust me, ladies. You may think that 110 lbs. on a 5’4” frame sounds like a good a idea, but it really isn’t. I mean, that make work for some people, but on me it was just gross.) I spent the next week and a half on a morphine drip with a pretty, pretty button that could deliver 10mg of the glorious liquid into my hand every 10 minutes. My mother wrote down some rather amusing hallucinations I described to them. My favorite is the one where I apparently had tea with Darth Vader, delicate china and all. Even through the morphine, though, there are a whole slew of horror stories I won’t go into just now—fevers, surgeries, tests, learning to eat again, trying to see again. Each day brought a new miracle and a new hardship. I spent 32 days in that hospital and have spent the past two years since my release going to doctors, working around my health, making the most out of each day. The hardest part of recovery, though, began with the first time I saw myself in the mirror.
Having grown up in the south, I honestly believe that the worst thing you can hear when you know you look like hell is some sweet little old lady gasping “bless your heart” the when she sees you. My own grandmother burst into tears the first time she saw me. While I have never found myself to be extremely attractive, and I’m glad to say I’ve never been vain, it truly is difficult to describe what it’s like to feel as though the body you’re inhabiting cannot be your own. My eyes weren’t mine. My lips weren’t mine. The hair was wrong and the bone structure even seemed different from the complete and utter lack of fat beneath the skin. It would have been one thing to lose an arm or to have one distinct scar, but my body was covered in scars and discolorations, riddled with new markings and textures. The worst of it was, my tear ducts had been affected and I quite literally could not even cry about it. Later, I would even have scar tissue cover my right eye, leaving it blind and appearing as though to have a cataract. I use a cosmetic lens now to make it look more normal, but even still I have people who look at me strangely and whisper to their friends.
It’s amazing how society builds women up to have to look a certain way. Our hair should fall like this, and our eyes should look like that. We should have soft, smooth skin and a pleasant smile. Of course, the more symmetrical the face, the better! In the time between leaving the hospital and finally integrating myself back into a good group of friends a year later, I spent far too many hours flipping through magazines and old pictures, torturing myself with what I had been. My mother tried to tell me how beautiful I still was, but all I could see were the scars and the still-red eyes and the dingy, stringy black hair, half of which had fallen out from the new medications they had me taking. I would go back and forth between avoiding mirrors at all costs and staring into them for long spells, trying to discern which parts of the me I knew were still there.
Then one night I was up late at my father’s house, another bout of insomnia having kept me up, and my father came out of his room to check on me. He and I have never talked much, and we held more of a daughter-dad than a father-daughter relationship before my stint in the hospital, but on several occasions he has sat down with me and really listened. At first, I tried to brush off the conversation, saying I would go to bed soon, but he stayed a while longer, and I found myself talking. I poured out my thoughts to him, unfiltered and awkward though they were, about not knowing who I was anymore when I looked in the mirror or at any other time. I told him how much I missed my old face and didn’t know who I was with the new one. I explained how completely helpless I felt and out of control and unable to spin my life and my body back onto any sort of imaginable path. With such a horrible face, how would I ever find a job or a husband? How would anyone ever understand and love me? How could I gain the confidence I once had to make new friends and build a new life? How could I ever get past this horrific nightmare and put the pieces back together? How could I ever look at myself in the mirror again and see me? I must have rambled for half an hour before the sobbing began. Even without tears, my whole scrawny body shook, and my father just held me. At 21, there I was, curled up in my father’s arms, shaking like a little girl who had fallen down. In all honestly, that’s exactly what I was.
My father then said something that took me yet another year to fully comprehend. He said to me, “You know that saying, ‘Beauty is in the eye of the beholder?’ Well, it’s the truth. You can’t look in the mirror and see yourself the way you see you. Mirrors are pieces of glass that will often distort the truth. Look at those funhouse mirrors. That’s not real. The mirrors you should be looking into are the people who love you. Your mother and I, your grandparents, your aunts and uncles, your cousins, your friends. You should look at yourself through our eyes and use us as mirrors. God made you perfect, and you are beautiful in His eyes. You might not look like the girls in the magazines, but you are beautiful.”
It was then that the tears, though fleeting, finally came.