I Never Wanted my Hemangioma to Define Me

Emily Weitz | Longreads | October 2019 | 13 minutes (3,434 words)

Some kids spent a week of their summers at the Jersey Shore. Others went camping in the Adirondacks. I spent a week every summer of my childhood in the Children’s Ward of NYU Hospital. Muppet movie nights and a play room where children in wheelchairs piece puzzles together. The click click of high heels hurrying down hallways, the smell of cleaning supplies and anesthesia in the air.

I never wanted my hemangioma to define me. Even if it took up half my face, like a suffocating, throbbing purple blanket over the real me. I knew that it was the first thing people noticed when they looked at me. Who’s going to notice big brown eyes when they’re sitting next to a volcano that exploded on a little girl’s cheek?

My time at NYU wasn’t just about the anesthesia, the knives, the lasers, or the long meetings with doctors where they spoke about me more than to me. NYU was also about the other kids, and about how, before I could even speak, I witnessed how lucky I was. Other kids at my school may have thought I was ugly, or even deformed. Other kids at my school thought I had problems. But they hadn’t seen the inside of the Children’s Ward. They hadn’t been the one who came for a visit every year, for a weeklong vacation, before they headed back to the world of fresh air and public school. They hadn’t gotten to know the kids who didn’t have that luxury.

***

“It’s like a birthmark, but it’s not.”
That was the short answer that I regurgitated all day long.

“It’s not polite to stare.”
That was when I was feeling really scrutinized.

“Your mom must not have taught you right.”
That was when somebody really cut beneath the armor.

When someone genuinely wanted the story, when they were really asking because they cared, I had my answer for that too: “It started out as a little dot and then it grew and grew and grew …”

By the time I was 3 months old, the dot had spread like an ink spill. It climbed up the side of my face, dangerously close to my right eye. It grew out, too, pulling my lip down and threatening to grow into my mouth. They had to operate. It could blind me. It could choke me.

People didn’t know that much about hemangiomas. Doctors argued about what to do with me. We attended “hemangioma conferences” and I sat at the front of the room, hundreds of doctors staring at my face. One doctor would stand beside me with a marker and draw lines on my cheek to show where he would lead his knife. I learned how to sit very still, teeth clenched to prevent the muscles of my face from moving. I had to be especially careful with that lower lip — no pouting. My jaw still aches to this day from those sessions.

One doctor wanted to chop the whole thing off and graft some skin from my butt to patch up the wound. That’s when Dr. Zide stepped in, and in my mind’s eye, he was wearing a cape that was billowing in the wind.

“Don’t let that butcher touch her,” he famously said, famously, to my parents. He explained the slow road we should take. First Dr. Berenstein, who always gave me high fives, would perform alcohol embolizations to kill the blood vessels that were multiplying like cancer cells. Then, Dr. Geronimous, who was famous for zapping rich ladies’ wrinkles away, would take over to lighten the deep purple color. For these laser treatments I’d be awake, with a local anesthetic that numbed the pain while he zapped 30, 40 times into my delicate lips, chin, and cheek. Then, many years later, it would be time to see Dr. Zide. He would perform reconstructive surgery to recreate my lower lip and to smooth out the puffy skin. By the time I graduated from high school, he said, I’d be beautiful.

I never wanted my hemangioma to define me. Even if it took up half my face, like a suffocating, throbbing purple blanket over the real me.

Beautiful? I grew up thinking physical beauty was beyond my reach. I knew I couldn’t be beautiful. I just wanted to look normal. I just wanted people to see me when they looked at me, instead of just seeing my hemangioma.

I had so much more to say than “It’s like a birthmark, but it’s not.” I had so much more to say. But to get to the content underneath the thing that made me different took so much work that plenty of people never got there at all.

It’s easier to put someone in a box; it happens all the time. Whatever makes someone different, that’s what they are. My hemangioma was not the only thing that made me different. Everything about me made me different, just like with everybody else. It’s the unique snowflake particles, from the way I react to change to what makes me laugh to the color of my skin. But all those nuances that made me who I was were dwarfed by this One Big Thing that made me different. If people couldn’t get over it, and they often didn’t, they never got to know me.

***

I started ballet when I was 2 years old. I remember spinning around another little girl — she had a blond bun. She was on one knee in her pink leotard. Her hand was up in the air. I touched her finger with mine, popped up on tippy toes and started to move around her.

“You’re ugly,” she hissed.

I hit her.

My mom said she didn’t blame me.

Once I was in the hospital bed, my stuffed animals shoved in beside me, just finishing a cup of Jell-O. The nurse came in with a big smile.

“Hi Emily! Want to play a game?” she asked. “Put your hands out like this.”

I eagerly extended my two hands, forearms up. She jabbed a needle into my wrist. I spat on her.

My mom said she didn’t blame me.

They used to call me Lip. At baseball practice, I was one of two girls on the team. This would have been bad enough, but I was also not good at baseball. But worse than all that, I had a hemangioma.

“Lip!” they’d shout when I arrived at practice.

It was all they saw.

I was so much more than a lip. I had so much more to say.

They also didn’t consider me a girl. They used to say that there was only one girl on the team, nine boys, and me. I was an “it.” My hemangioma was so big that it eclipsed my girlhood, my gender. Everything else about me went unseen, because all they had room for was the one thing they didn’t understand. They took away my identity, made me confused about the most personal parts of me, because I was different. It happens all the time.

Every Halloween I dressed up like a princess or a fairy. My favorite colors were pink and purple. Lace on all my dresses. I took shelter in the norms of what girls were supposed to be, hoping that I could somehow fill that mold.

In elementary school, one of my friends dressed up as a werewolf for Halloween. I was Tinkerbell. As we sat on the floor in her living room, sorting through our Snickers and Skittles, I looked at her face. The caked-on makeup peeled off in bloody pustules. I couldn’t conceive of why anyone would dress up as something ugly. Why would you ever use this opportunity to be ugly? I looked down at my froofy tutu and smiled. I was clearly a girl.

***

Lisa was my age, and any time I went to NYU, she was there. She was always there. I used to visit her in her bed, which was surrounded by My Little Ponies. She must have had 200 of them.

“Lisa’s so lucky,” I said to my mom. “She has so many My Little Ponies.”

I saw my mom clench her teeth. She sounded like a robot when she said, “Lisa is not lucky.”

One time when I visited her, Lisa didn’t have any hair. It was the treatment, they said. I heard the word brain and the word cancer. They were heavy words.

When I was 6 and I checked in for my week at NYU, I ran down the familiar halls, the pinkish tile, the playful scrubs on the nurses, patterns of puppies and numbers. I ran to Lisa’s room. The bed was empty. I was disappointed that she wasn’t there, but I remember feeling happy for Lisa that she was finally out.

“Lisa went home,” I said to my mom.

“No honey,” she said sadly. “Lisa didn’t go home.”

***

When I think of elementary school, the hospital is a piece of the tapestry, but it’s not the whole thing. I had friends — best friends. They protected me as part of their pack.

We lived in an idyllic example of Suburbia, U.S.A.: Ridgewood, New Jersey. I grew up running down the block to the school playground, skipping over a little bridge that ran over a brook. My two best friends were Matt and Mary. Matt lived next door. He was an only child and even though his parents were antisocial to the extreme, they always made me feel at home. Mary lived around the block, and we used to cut through a few backyards to get to her house. Her mom had the softest voice in the world.

There was a blackberry tree growing next to the brook, and its branches hung over the bridge leading to school. In the springtime, we would pick those berries and eat them. Sometimes they were ripe and sweet and sometimes they were hard and sour. Across the bridge was the playground, and there were big kids who hung out there. When I walked across the bridge, they’d shout mean things to me like “What happened to your face?”

They scared me.

Mary and Matt, at 6 years old, would link arms with each other and walk in front of me.

“Leave her alone!!” they’d say.

They were heroes.

Six was a big year for us. One day we were all playing Cheetahs in Matt’s yard, and the next day, Mary’s dad was gone forever. A sudden heart attack, and he left soft-voiced Jill and her four babies, the youngest of whom was Mary.

I was no longer the only one with problems.

By the end of elementary school, all the kids in my school were used to me. There was nothing freaky or confusing about me anymore. They had all written cards for me in the hospital, they had met the stuffed animal I brought with me to my surgeries. They just knew me. And whether they were my friends or not, they didn’t have any more questions. It was such a relief to just be Emily.

In fourth grade we were developing some serious crushes, and by fifth grade some boys even liked me. I remember one boy saying I would have been the prettiest girl in our school, if, of course, I didn’t have a hemangioma.

Of course, I thought. And I was actually flattered.

But then came middle school. A whole new crop of kids flooded together, and that meant I was again an unknown. The kid from my baseball team who used to call me Lip showed up again, and I didn’t waste a second before telling him I’d never forgive him. I don’t forgive him to this day. #sorrynotsorry

By seventh grade, my surgeries were just day trips to Dr. Geronimous. The laser treatments hurt, but the worst part was the needle they stuck in my mouth and cheeks to numb me. Once when we were in the hospital waiting room, all I could hear was the screaming of the kid in the next room. He was howling like his leg was being sawed off. My mom offered me a second pouch of fruit snacks.

Then in came Dr. Geronimous, and he washed his hands for me. I laid back, stared at the light and let my face go slack.

“Rainbows and waterfalls and butterflies,” I repeated to myself, over and over, as the zaps snapped through me.

I had some good flirtations in middle school. Cute boys I joked around with — hard, future lacrosse stars and stoners in their earliest days of guydom. I held my own, and I even started defending others who were being bullied, like poor Margie Dutt. They used to call her Margie Butt and made fun of every roll on her 12-year-old body. Bulimia hit her hard in high school — once I had to drag her out of a McDonald’s bathroom stall. I defended Margie. I yelled at the boys when they made fun of her, and they listened to me. I had put in my time being ridiculed; it was my time to protect.

High school arrived and the flirtations continued, though no boys actually asked me out on a date. By this point surgeries were a quick little trip to Park Avenue. Lay on the plastic chair, recline, cover my eyes with a paper cloth, make my face slack. Ten, 20, 50 needles to the face, then Dr. Zide could cut and sew while he talked about his daughter’s prom dress.

One time, the anesthesia wore off in the middle of surgery but I couldn’t move my mouth to object. I felt the pain of the knife cutting through my lower lip, the skin being snipped away, and all I could do was lift my arm, which felt heavy like cement. Slowly, with all my will, my left hand went up. There was a murmuring of voices, then everything went black.

To learn to let things be done to you when they hurt, to learn to be passive when your body wants to resist — what does that do to a young woman’s psyche?

Getting the stitches removed was always hell. Even as I got older, they had to hold me down. I couldn’t help it. I knew I shouldn’t move, but my body couldn’t help but kick and flail. Once, the knife accidentally snipped at the delicate flesh inside my cheek. I could taste the blood, metallic.

All of this could have been a thousand times worse — would have been a thousand times worse — but for one thing: choice. I always knew that these things were my choice. I elected to have the surgeries. If my parents had told me I had to go to the hospital, that I had to undergo these procedures, I would have felt like they wouldn’t have loved me otherwise. I would have felt like who I was wasn’t good enough. I would have felt like my body didn’t belong to me.

Choice, even if I ended up choosing the thing everybody hoped I’d choose, was my only way to avoid long-term trauma, regret, and resentment. Choice is empowerment.

“Whether you choose to do this or not, I will always think you’re beautiful,” my mom used to say to me. “You are beautiful just as you are.” But we couldn’t pretend that the rest of the world would see me that way. “I will be with you every moment,” she promised. And she was. From pajama parties in the hospital to holding my hand while I slipped into unconsciousness. From the moment my dad fainted in the hospital room because of all the blood on his new baby. My mom always stayed next to me.

In 8th grade, I had the biggest crush on Jake Stevens, and we got along famously. He sat behind me in chemistry. He always asked me for Altoids. I baked cupcakes and told him they were from scratch, even though they were totally from the Betty Crocker box.

I had a big surgery right before our end-of-year celebration, which really sucked. I had to get 35 stitches to the face, put a bandage on, and go to school. By the time graduation and the celebration came around, I had gotten the stitches out. But the scars were always so bad in their first weeks. They were purple and sometimes a little crusty with blood. They were gross.

Smiling also hurt right after the stitches came out, like the skin was barely holding itself together and if I smiled too big it would just burst open.

The day of the celebration, Jake let me wear his baseball cap. Syracuse lacrosse. I liked him so much. All day I marched around in my short shorts and Jake’s hat, playing tag in the sunshine, trying not to smile too big, because the scars were so tight and sore. Under the curved brim of Jake’s hat, I felt safe, and more than that, I felt cool.

There was a while where I wondered why Jake didn’t invite me to his birthday parties. We got along so well. We joked in class and we played four square together at recess.

My Sweet 16 was an awesome party — 80 kids in a fabulous dance hall, my brother DJing, me in a pretty new dress. Of course I invited Jake — I kept my eyes on the door the whole night. But he didn’t come. He didn’t even RSVP.

Then I started to get it.

He wasn’t going to see me that way. All the cupcakes and Altoids and clever conversation in the world wouldn’t make him see me that way. Even the tightest black dress on my lovely 16-year-old frame wouldn’t make him see me that way.

And because he didn’t see me that way, I decided nobody could see me that way. Because I was ugly. I wasn’t normal. Who would ever want to kiss these lips?

I did have a nice body though. I knew that. When Julia Roberts told Richard Gere her legs were 88 inches of pure therapy, I did the math. 44 inches per leg? I took out my tape measure. Okay. I had something in common with a Pretty Woman.

So I shortened my skirts. I started thinking if I could just draw their attention down to my legs, it wouldn’t matter that my face was so messed up. And there were boys who took that bait. Even in high school, I knew if a boy wasn’t looking me in the eyes when he said he liked me, I shouldn’t give him the time of day. But I didn’t care. I had to take what I could get. I thought I should be with anyone who would want to be with me, because they must be a good person if they would look past my hemangioma.

I was ugly. I wasn’t normal. Who would ever want to kiss these lips?

I was 16 at my final surgery. In the follow-up in Dr. Zide’s office, he performed his usual checkup. He pulled on my lip, used his gloved fingers to smooth out the skin, asked me to smile, to frown, then to “pucker up.” And then he kissed me right on the lips, right there in front of my mom.

“You’re beautiful,” he said. I smiled, and my mom smiled too. “Now let’s do something about that nose.”

***

I recently met a woman who had been paralyzed at 16. Up until her accident, she had a normal childhood, fully functioning limbs and all. After that, she was in a wheelchair forever. She said she wouldn’t change her life if she could – her identity has become so connected to being in a wheelchair, and being who she is in a wheelchair, that if she could get up and walk, it would be very confusing for her.

I really get that. Once I left Ridgewood, people didn’t stop and stare anymore. People barely ever asked me what had happened to my face. It wasn’t the first thing people saw when they saw me, so I was able to finally cultivate my other aspects, my gifts that made me whole. All the subtle nuances could finally shine through. I was the girl on the skateboard. I was the girl who loved to dance alone. I was the girl who did yoga everywhere, who traveled fearlessly, who had beautiful babies, who wrote for hours at the coffee shop without looking up. I was the woman who wouldn’t be categorized, ever, as a writer or a teacher or a singer or a mother, because I was so much more than any one of those things.

I have so much more to say.

* * *

After more than a decade as a journalist, writing for publications including The New York Times, Vice, and the Daily Beast, Emily Weitz has decided to focus her storytelling energy on personal essays. “I Never Wanted my Hemangioma to Define Me” is the first in a collection of first-person narratives that seek the universality in the individual human experience.

Editor: Katie Kosma
Copyeditor: Jacob Z. Gross