Originally written Fall 2007
Growing up as the only girl in the Mayer household wasn’t easy. My brothers were legendary for their good looks in our neighborhood. One was better looking than the next, culminating with my little brother who bears a striking resemblance to John Stamos. When people realized I was the “girl in the Mayer family,” I would get responses like “You’re the one with all those gorgeous brothers? Really? You don’t look anything like them.” If I had been born with a more ascerbic tongue I might have responded better, “You have a brain? Really? You don’t act like it.” Even on my wedding day, my brothers upstaged me. Friends from North Carolina, meeting the Mayer clan for the first time, were like a parade of well-wishers gone awry, “You never told me how handsome your brothers are.” My sarcastic responses, “You never knew why I left Philadelphia?” went unnoticed. Even one of the ushers got into the act, “Jesus, Michelle, your brother Keith is so gorgeous even I can’t stop looking at him.” And here I thought it was MY big day.
I wasn’t ugly mind you, just plain. Well, actually I was ugly from ages 7 until age 12. I got glasses in second grade which didn’t help my situation. My mother, devoutely religious, insisted that I wear blue frames because that was the color of the Blessed Mother who, being flattered by this gesture, might intervene on my behalf and reverse my myopia. As if the Blessed Mother had nothing better to do with her time and allotment of miracles. We also put a holy card of St. Lucy, the patron saint of eyes, in my room. St. Lucy is usually pictured holding a plate with two eyeballs on it. Imagine looking at that every night before falling asleep. Apparently Mary and Lucy were either unimpressed with these efforts or otherwise occupied because I am still blind as a bat. My parents were tuned in enough to get me contact lenses before I entered high school and that helped my looks considerably. Sans spectacles, I was presentable and being short and outgoing put me just over the edge into the “cute” category for most of high school.
Even if I had been blessed with good looks, I would not have known what to do with them. I’m terrible at applying make-up, doing my hair, and dressing fashionably. I look at my sister-in-law, Ann with considerable envy. Ann is one of the only people I know who wakes up beautiful. She is not only stunning but also one of the nicest, most down to earth people that I have ever met – a rare combination of terrific looks and personality plus. I swear her husband Jon must stare at her sleeping face every morning and gleefully remind himself, “She’s mine.” On an average day, Ann doesn’t fuss with her appearance (she doesn’t have to, she looks better unshowered and make-up free than most women do on their wedding days, self included), but when she makes the effort, she could stop traffic. Her hair and make-up are flawless and her attire timeless; she looks like she just stepped out of a photo shoot. Her only inperfections are her height and freckles and, let’s face it, with a face like an angel no one notices that she’s only 5’1”, and even her freckles are lightly dusted across her face like an afterthought.
I guess surrounded by men my whole life, I just never found any enthusiasm for such feminine pursuits. I was the bane of my mother’s existence: her only girl was a tomboy. To this day she’ll remark on my appearance, “See, you look so nice when you wear make-up,” causing me to wonder if this is a thinly-vieled way of saying, “Girl, you need some serious artistry to compensate for nature.” My husband and I were going to a casual happy hour at the hospital during his first year of training when my mother stopped me, “Michelle, you’re not going like that, are you?” “Yeah, why?” I replied bracing myself for the inevitable. “Michelle!” she gasped, “You are a doctor’s wife!” I about died laughing. She must have figured that I needed to don A-line skirts and twin sets for the rest of my life (god forbid). I guess she also forgot that I’m a doctor too. Suffice to say that I am just not adept at the transformative options available to women for the purposes of enhancing the looks God gave them.
All this is not to say that I am above it all, because I am not. All the energy that I did not focus on my hair and make-up were funneled into efforts to transform my body. I actually spent most of my life string-bean thin. When I went to college, the guys couldn’t believe how much food could consume -- all 60” and 95 pounds of me. I ate two bowls of cereal and three donuts every morning for breakfast (I did eventually cut the donuts out of my daily diet, however). And we had to order extra pizza for me because I ate half a pie by myself. One night the cafeteria hosted a fancy dessert buffet. When I returned to my seat with 6 desserts, my friends Kevin and Stephen shared a distressed glance ,“You aren’t going to eat all that, are you?” Kevin asked. “Sure I am,” I replied, “It’s a special dessert night.” When I became lactose intolerant, the running joke was that I had already used up my lifetime supply of lactase, the enzyme that I was lacking.
But my lifetime of gluttony finally caught up with me in my twenties. Suddenly, I could no longer button my pants. I panicked; this had never happened to me. It didn’t take long for me to join the ranks of young women dieting and exercising obsessively. Before long it seemed like the more I tried to lose weight, the more weight I gained. I found myself vassilating between severely restricting my intake and bingeing. Since I couldn’t figure out how to make myself puke, I purged through exercise. I spent three years this way. I was so desperate to be skinny that I once wished that I would get sick so I could be thin again.
I have thought about that desperate wish over and over again. You have to be careful what you wish for: the fates are listening. Oh, they aren’t listening if you wish for something appropriate like, peace in the Middle East, but wish for something inappropriate like a deal-with-the-devil trade involving the loss of your health and they are all ears. Next thing you know, BAM, you are losing weight like crazy and feeling like shit. Before I got sick I weighed 113 pounds; two years later I weighed 95 pounds. I am now 81 pounds and my doctors are advocating a feeding tube so that I can eat while I sleep and gain some much needed weight. The irony is that woman will often remark on how lucky I am to be thin. I want to tell them how misplaced their envy is, that my body looks fine on the outside, covered in clothes, but that inside it is scarred and falling apart. It’s a sad statement on society when perfectly healthy women covet a figure that is the consequence of chronic illness. Trust me, I’d rather carry a few extra pounds. And I finally find myself staring at full figured women wishing that I looked so wonderfully Rubenesque. Ans as I struggle to meet the needs of my children when I am almost devoid of energy I realize that the ideal of the robust female body was a nod to the need for women to sustain not only their own lives but also the lives of their children well beyond pregnancy and infancy.
Scleroderma is disfiguring. When you open up to scleroderma in medical texts, you are greeted by a head shot of someone whose facial skin is so taut that they appear expressionless. Their lips are almost non-existent and cannot cover their teeth. As if this is not enough, the blood vessels on the face are usually dilated and give the appearance of red polka dots all over the face. In the early years of my illness, I was petrified by these photos. When I was diagnosed with pulmonary fibrosis, my parents flew out to California to stay with me. One night I cried in my mother’s arms as she rocked me back and forth like a baby. The weight of the disease, the new pulmonary diagnosis, and my grim future were so heavy, but the words that came out of my mouth were, “I don’t want to be ugly.” Even the fear of death could not overshadow the fear of being unattractive. “Michelle,” my mother chided gently, “Why have you always worried about this? Ever since you were a little girl. You’re not ugly, you aren’t going to be ugly.”
But the facial changes came nonethless. They were very slow at first but crept up on me over time. Now, when I look a pictures of the last decade I see the changes so clearly. My top lip is nearly gone and my smile is virtually non-existent. My face is covered with red blotches that have finally inspired me to master make-up. In my mind’s eye I still look like that voluptuous 25 year-old, but every morning an altogether different face greets me in the mirror. And now the chemo has thinned my hair as well. I have never looked worse. I am embarrassed by my appearance. Thank god I was not born beautiful because the fall to this state would have been a horrible one.
I want my old face back and I have a new appreciation for how cute I once was. No, I wasn’t as attractive as my brothers but I was attractive enough. I wish I had appreciated it more then. But in some ways the transformation seems appropriate as if the change in my outward appearance reflects the change in my outlook and my life and is a sign of all I have endured and overcome: it is my stigmata. I am no longer that 20-something girl that defined herself by her appearance. I am a women who knows, at the very core of her being, that outward beauty is meaningless and fleeting. And I know that my time is better spent being a better person than a more physically attractive one. My disease has delivered me from the tyranny of a looks-obsessed society. I cannot compete with models and movie starlets. I never could, but now I have an excuse to opt out of even trying. I have to be satisfied with my appearance because there is nothing I can do about it. I look in the mirror and realize, Popeye-like, “I am what I am” and that is good enough. Better late than never.