Once again Tina Fey has inspired me. I feel a kinship to her
but if I met her I would never say something lame like that. I’d probably
stutter something if I even said anything at all. I’d be like Kenneth in the
episode “Seinfeld Vision” when he meets Jerry Seinfeld.
I was reading her book “Bossypants” for the second time when
I came across the section in which she discusses her scar. Until her book she
had never publicly discussed it. And by “never” I mean officially. She probably
discussed it in a coffee shop, or restaurant, or some other public place
before. People (and by “people” I mean desensitized, money hungry, idiot
magazine writers) wanted to know how she got the scar. When they found out she
got it because when she was 5 someone slashed her in the face they became even desperate
for details. She wouldn’t discuss the details with them. And I completely
understand why. (I kind of hate how I’m talking about her like we’re friends.
It’s very presumptuous of me. Even though I want to be best friends with her
that fact makes me respect her privacy even more).
When I was ripped out of my mothers stomach (C-Section.
Thanks mom for going through all that pain and recovery time) I appeared to be
perfect. Ten fingers. Ten toes. All of my organs were there and I was
breathing. Things were lining up for old Liz Lemon (30 Rock reference. Watch
the show please.) When I was five months old my mom noticed a brown spot on the
back of my neck. Being the neat freak she is she tried to scrub it off. It did
not come off. As I got older the spot became bigger and thicker. When my
parents noticed this they took me to the doctor right away.
One doctor became two. Two became three. Three eventually
became upwards of 30. In the beginning one dude told my parents I had cancer.
Thanks, guy, for scaring the crap out of my parents. Many didn’t know what it was or had vague guesses.
Some people have their earliest memory of a birthday party
or school or a certain toy. To my recollection my earliest memory is going to
Santa Barbara to a specialist. I was four and the whole party was for me! I was
the guest of honor! About thirty doctors had come from around the country to
look at me. Unfortunately, we left that day with no real answers. My memory of
that day is vague. I remember the color gray, white coats, and a bunch of nice
guys touching my neck. The feeling I remember is a positive one. They were all
very nice to me and my mom says they told me jokes that I enjoyed.
Finally we had an answer. I don’t know whom it came from of
when we knew. You think I’d remember details from such an important plot point
in my life. Whoops. What I had/have is called Epidermal Nevus. “Epidermal”
meaning “skin” and “nevus” meaning nerve. So not that specific. We know it’s on
my skin (they went to school for ten years to tell me this?) and we know it’s
connected to my nerves. Why they didn’t come up with an answer right away was
that most people get this on their stomach or other areas on the trunk of the
body. So far I was the only person to have it on the neck. On me it only
grows on the right side of my body and only from the neck up. I have it on my
head, the inside corner of my eye, around my ear, and of course, my neck.
So yay! We have an answer! Now to get rid of it. We didn’t
consider this option at all right away. I was busy being in Kindergarten
refining my usage of blocks, colors, and letter writing, not knowing anything
about me was different. And since it was not causing me pain and seemed to be
no threat to my health why would we do anything about it? It was the hand we
were dealt and we were going to take things as they came.
Until it became painful. The thing about epidermal nevus is
that it grows from the inside out. As I grew it grew. I explain to people as
looking like cauliflower but brown. By the time I was in second grade it was a
little less than half an inch thick and as I turned my head or twisted my neck
in any way it would get irritated. By the time I was in third grade it was
beginning to bleed and scab. (I forgot to warn you all it gets graphic. Sorry.)
So we saw a Doctor in Santa Barbara who said he knew what to
do. So after many meetings we set up a surgery date. I thought I was fine. I
was a pretty tough kid and pretty desensitized to doctors offices by now. The
day of the surgery came and we drove to SB, they put me in a gown and hair cap,
and I began to cry. I was only 8 and they were about to put me under of course
I was going cry. The scary weird part of it was that the doctor started to cry.
Here’s how I know God is with us: my parents knew to leave.
Something in them screamed, “this isn’t right”. So we left. And if you know my
parents they usually put their trust in people who are trained and usually
follow directions. To cancel a surgery on the spot was a big deal. (and that
wasn’t an invitation to argue with me about God and signs and his presence.
It’s what I believe and it’s my blog so shut up).
We went shopping and had lunch. And all day I felt like it
was my fault. I shouldn’t have cried. I should have been brave. I remember
feeling so bad because my parents took a day off of work for this! They never
took off work! I still get emotional looking back on that little girl who felt
like she ruined everything because she cried. And now I was going to be stuck
with this thing on my neck. I had ruined my chances of being “normal”.
In the end it was a gift that we left. What that doctor was
going to do was cut out the portion of my skin that had the birthmark on it and
remove it completely. So basically the entire right side of my neck. He was
going to cut skin from my bottom and sew it onto my neck. Later, from another
doctor we found out that I most likely wouldn’t have had mobility in my neck
and the scaring and discoloration from the foreign skin would have looked even
worse. I don’t blame that doctor in Santa Barbara. He was doing what he thought
was right. I sure am glad it didn’t happen though.
I want to speed up. All the medical details aren’t what are
important. I ended up having my first surgery when I was in 6th
grade. We went to a family friend who was a plastic surgeon. By this time I was
bleeding on a regular basis so I wanted this gone. I was constantly in a dull
amount of pain. Plus it was the 90’s and those chokers with the little charm on
the front were totally in and I wanted to wear one! I wanted to be like those
girls on 90210! (That I secretly watched because I wasn’t allowed to watch
adult shows like that)
This procedure was not painful but very tedious. I’m not
exaggerating when I say it felt like I was being tortured. (Graphic stuff
coming up!) He first snipped the birthmark off with scissors (it was about an
inch thick by now), then he took a razor and scrapped it off, and finally he
took a mini torch thingy (technical term I found on Wikkipedia) and burned it
off. All the while I was awake. I heard and smelled lots of things and felt
some things. There was no need to put me under so they didn’t. I was frightened
because I could feel his hand on my face or collar bone and think that I would
feel the pain. But I didn’t. But for a few hours I sat there with my whole body
frozen, eyes forced shut, smelling my own burning skin. Side note: to date this
is the worst thing I have ever smelled. I can’t even describe it. I listened to
my walk man they let me bring in. I played my tape of the Nutcracker. For a
long while I couldn’t listen to that music without cringing. But now
miraculously I love it again.
Even though they may never read it I want to take this
moment to thank Dr. Bruce Daniels and his nurse whose name I have forgotten. He
was so kind to me and led me through that scary experience. I feel connected to
him forever. It must be so hard to do that to a child. And to the nurse who
held my hand, told me what he was doing, told me I would be ok. wiped my tears
with a tissue, and waved my Chinese fan I had brought to fan away the smell,
you don’t know what you mean to me. A stranger becomes a safe and loving place
so quickly in a situation like that, especially to a child. She never left my
side.
So I had had four surgeries like the one described above.
And because we knew it grew from the inside out we knew I’d have to come back.
No one knew in how much time because no one had ever dealt with this before.
It came back rather quickly. Eventually lasers were refined
(I always think of the lasers in Sunday in the Park with George and giggle at
this point of the story) and I had three more laser surgeries in high school.
The scars healed and looked better with this type of surgery. I had three more
surgeries to remove the growth on my head. Since it was under my hair those
were done by my dermatologist and were simply cut from my head and sewn up with
stitches. That’s a whole other awesome story where I thought sweat was running
down my face and only when it near my mouth did I realize it was blood. I’ll
save that one for later. And they told me my hair would grow back. It did….kind
of.
So I think those are all the surgeries and medical details.
Well not all but enough. Too much actually.
It’s exhausting to write it out. I’m sure even more so to
read it. If you’ve read this far…wow. It’s a lot. But in my mind it’s all in an
order of snapshots. It’s a movie in my mind (you’re singing that song now,
right?) I have never really discussed this in any detail out loud. I’ve thought
about it a lot but never addressed it. Unlike Tina Fey who keeps the details to
herself, I suddenly felt the need to share them. This is not an area of my life
that I discuss often or think about very often anymore. It feels like another
lifetime. But it’s always with me and creeps in when I least expect it.
Like when I meet someone new that I feel is important. Or
when I’m sitting in front of someone and my hair is up. Or a first date. And
once in a blue moon when I’m on stage. I feel it begin to burn like a scarlet
letter. But then it fades. But that third eye (viewpoints) is always there.
It hurt me a lot growing up. I know the day I figured
out I was different. I remember what I was wearing, where I was, what time of
day it was. It was like when you were on the swings and you turned until the
chains were as twisted as they could go and then you let go. Everything swirled
around you and your equilibrium was thrown and you felt dizzy.
I was at May
Grisham Elementary School lining up at our pole after recess. “Hey Molly! Did you throw up or is
that your neck?” Lance Teeples. I’ll never forget his name. In my unchristian
mind I secretly hope he is a pooper-scooper for the elephants at Barnum and
Bailey Circus or a checker at a K-Mart. His line was not very well written or
sophisticated but his delivery was pretty good. And all the boys in my class
laughed while the girls looked down at the ground. My response was something
like “Shut up Lance.” I was not as good at comebacks at age 8 as I am now. I held
it together for the rest of recess and the day and when I got home I went to my
room and cried.
Until then I had never thought of myself as different in a
negative way. I knew I looked different than my friends but I was living in a
beautiful bliss known as childhood and it never occurred to me that different
equaled bad. I never felt ugly until that day.
I don’t regret being born this way. Look at my life. I had a
home, food, clothes, I’ve traveled all over the world. I’ve had a comfortable,
happy life with the best parents and family anyone could ask for. You weigh the
good with the bad. And I have so much more good in my life. What I do regret is
having to grow up faster than I believe I should. I was asking existential
questions at eight. I remember getting on my knees next to my bed, with my face
buried in my pink Minnie mouse bedspread, sobbing and choking, punching my
fists into the bed, asking God why he did this to me. If he loved me why did he
make me ugly? What had I done to deserve this? Was I bad? If I was made in his
image why did I look differently than all the other kids? I yelled at God. I
pleaded with God. I swore at God. I prayed to God. And he listened and put up
with it and stuck by me. And now I thank God.
Maybe now that I think about it I don’t regret asking these
questions. Maybe that unique experience is what made me who I am. I do know
that it breaks my heart to watch that movie in my head wishing I could tell
that little girl that you are fine. You’re going to be fine.
What I do regret and always will is that I went through a
period I’m going to call “Deflection” or “Being a Bitch”. I was part of the
popular crowd in elementary school. And to change the topic of conversation to
things other than myself and what I looked like I made fun of other people. We
all did. I’m thirty and I still feel bad about things I said. I know I was
young and I know it was a defense mechanism but I knew better. I knew better. I did exactly what Lance Teeples did to me. And now I wonder what he was going through that made him act out. I left that group in 6th grade for other friends
that I had more fun with and I could be myself around.
When Lance Teeples made fun of me I told my Dad. Big
mistake. My mom was upset, and my dad did the quiet angry, jaw clench that
sends me running to my room to this day. The next day in Mrs. Franta’s class (I
loved her so much) Lance and I were called up to the front at recess and we had
a talk about what had happened. After that I never told my parents when people
made fun of me and I never cried in front of them.
This brings me to my next topic. My parents are the best
people I’ve ever met. If you’ve met them I bet you love them too. I felt guilty
for a very long time that they had a defective daughter. My parents didn’t
deserve having to spend their free time taking me to the doctor, or watching me
pain, or in the beginning worrying if I would live. We had great insurance but
when it came time for surgery they had to do a lot to prove it wasn’t simply
for cosmetic reasons. They had to prove I was bleeding and in pain. I didn’t
want to cause any more problems for them. I wanted to be perfect for them. I
wanted to be beautiful for them. That sense of duty has never left. I could see
how hurt my mom was when she saw how hurt I was. And now I understand my dad’s
anger was his kind of hurt. So I never shared with them again when I was
hurting. This maybe was not the best idea to keep everything inside but it’s
what I instinctively chose to do.
You’re probably asking, “So why does Tina Fey inspire you to
talk about this subject when she herself will not divulge details of her own
scar?” That’s a very good question blog reader. Thank you for asking! It was a
particular section in her book.
“I’ve always been able to
tell a lot about people by whether they ask me
about my scar. Most people never
ask, but if it comes up naturally somehow
and I offer up the story, they are
quite interested. ……Then there’s another
sort of person who thinks it makes
them seem brave or sensitive or wonderfully
direct to ask me about it right
away. They ask with quiet, feigned empathy,
‘How did you get your scar?’ The
grossest move is when they say they’re only
curious because ‘it’s so
beautiful’. Ugh. Disgusting. They might as well walk
up and say, ‘May I be
amazing at you?’ To these folks let me be clear. I’m not
interested in acting
out a TV movie with you where you befriend a girl with a scar.”
I included more of the text of her book than needed but I
couldn’t help myself. Read the book. This meant so much to me because finally!
Someone speaking about an experience I have actually had (many times. Especially
at church camp) and in a truthful way. I’ve always connected to Tina Fey’s
comedy and tone and this was no exception. She speaks about the relationship of
“scar haver” and “scar have-not” in a “let’s get on with things” manner. I do appreciate
people who want to hear my story and listen to how I feel. But not in the first
five minutes I’ve met them or checking out at Vons on a Thursday night when I
just want to go home and make my mac’n’cheese and watch Dancing with the Stars.
When I still had the birthmark I used to dread meeting new people because it
was often the first thing I had to explain about myself. And I am so much more.
It inspired me to write because I felt the need to respond to her even if it
was just for me. She’ll never read it but now it’s in print (and out of my
head) that I appreciate her.
A section or chapter I’d love to add to Bossypants. It’s
called “The Face”. I used to be able to tell a lot about a person by the face
they made when they asked me about it. I’m not sure what was worse: the overly
sympathetic ass who would murmur “You are still beautiful in God’s eyes”. I
appreciate that but does God want to date me? Does he have a brother? Or worse
still was the scrunched up look up disgust like they’d just seen road kill, the
pointing to my neck and “What’s that?” You would think that second option only
came from small children but surprisingly I got that from a lot of adults. That
look is hard to shake even years later.
I don’t mean to share this in a way to condemn people. It’s
not easy to know how to talk to someone who has a birthmark, scar or birth
defect. I know in your head you’re thinking, “Look anywhere but there. Make eye
contact”. I have been lucky to have many people in my life who have supported
me, listened to me, and let me not talk about it. It’s just therapeutic to
share the now (almost) funny ways people communicate with me. I’ve never really
spoken about it with anyone who might get it. Because that’s an awkward
conversation in itself. “Ah! I see you have a birth defect too! Let’s share our
stories over coffee. Maybe we can turn them into a script for a Lifetime
Movie!”
Lance Teeples moved away soon after. More came after him.
After I had my surgeries my scars were a great deal less noticeable. People saw
something different about me but it just looked like skin. I no longer had a
growth on me so I was more widely accepted. By the time I was in high school
the whole ordeal seemed to be a thing of the past. I kept a lot of the
emotional scars and bad habits but that’s another 400 page blog that I promise
I won’t write.
I do know that I need to keep working on myself and changing
habits that I established all the way back in elementary school. I really
thought I had worked through most of it when a surprising moment happened in
grad school. I had gone to PCPA for two years prior and had experienced breakthroughs
and I was 25 by now. So obviously I was an adult with all my life problems
ironed out. Uh Doi.
I was in Svetlana’s acting class getting reamed. She had
been yelling at me for about 15 minutes and I was frozen with no answers. Which
is the worst response when communicating with Svet. We were doing Chekhov. Even
worse than getting reamed by Svet was getting reamed while doing a Chekhov
scene. I was playing someone who was very beautiful and confident and Svet was
yelling “Why are you so afraid to take control of the room?! Of the scene?! Of
the moment?!” And in my head I screamed back, “Because people will look at me!”
And I was frightened. I had not had a thought like that in my head for a long while.
I thought I had gotten over that fear of being looked at in my vast 25 years.
It was a very good reminder to me that my growth and finding love for myself is
an ongoing process. I must continue to fight those Lance Teeples voices in my
head for the rest of my life.
And really who doesn’t have their own Lance Teeples shouting
at them in their brain? I’m no different than anyone else who was made fun of
because they were different.
I suddenly remember William. I never forget him but I had
forgotten about this moment. He was in my grad class and he is his own story. A
blog I most likely will not write. He doesn’t deserve the time or energy. But I
remember him saying to my class or maybe it was just to me that “You have no
idea what it’s like to be the only one”. (Side note for those of you who don’t
know him he is African American.) He liked to hang that ideal over my/our head
a lot. And when he said those words to me I thought, “Fuck you. You don’t even
know me.” Because to this day I have never met anyone who looks like me. Who
has the same birthmark. Not that I need to but it’d be nice to talk to someone
about it. Sorry for the language. It’s a very touchy subject. But this actually
brings me to a point. I know, aren’t you proud? I now look very normal to
people. When we aren’t looking very carefully at the people around us we all
look “normal”. I need to use this as a lesson that you really can’t judge a
book by its cover. So cliché but that’s the theme and it’s true. Those Twilight
books have a pretty cool cover with the pasty hands and apple but I’m pretty
sure what’s inside is garbage. (I got through ten pages.) I have this huge
history behind me wrapped up in this package of the present. And so does
everyone else. I need to be mindful of that.
Where do we go from here? (This isn’t where we intended to
be) (The only Andrew Llyod Weber I like) I noticed recently that my birthmark
is growing back. You can see brown now on my neck, which scares the hell out of
me. The last surgery I had was more than ten years ago and I do not want to
open that chapter again. I am afraid to. I’m not afraid of the procedure. I can
take a needle like nobody’s business. I’m afraid of what I will feel. I am afraid
that opening that door will make me feel ugly again. I have learned so much but
it’s hard to teach the heart to feel something else when sense memory is so
powerful. I’m also scared because I do not have health insurance and even if I
did it will be the fight of my life to get them to cover any surgery I may have
to have. But it’s just beginning so I have time before I have to figure
anything out. I also have researched my birthmark and now know that the type of
Epidermal Nevus I have is called Phakomatosis pigmentokeratotica. It wasn’t
until recently that I realized the internet had been “invented” since I was a
kid and I could google my birthmark. I wouldn’t if I were you. The pictures are
pretty graphic.
If you read this thanks for investing so much time in my
personal story. It is very long and not written very well or in an organized
manner. Other blogs I wrote I worked harder to connect to other people out
there on the interwebs. This time I wrote purely for me. I know that people can
relate to my story on some levels because we all have gone through trials and
tribulations. But only part of me knows and feels that. My story feels unique
because it is. Because it’s mine.