Calm on the surface, but paddling like mad underneath.

Hello! Just a quick update to let you know that I am still alive, although rather tired.

Earlier this week I took a quick trip to Chicago for work, but ended up stuck in the airport for nearly the whole day on Tuesday. I didn’t get home until 1am, and I’ve been feeling pretty sluggish ever since.

There are so many things I want to write about, and hopefully I will get into a better routine soon. I have this idea that I can wake up at 5 am, meditate, go for a run, write for an hour, have breakfast, shower and dress for work by 8am. Which, really, seems doable, right? I mean, it’s three whole hours at my disposal. There was a time that I used to get up and walk 3 miles and do a nice yoga sesh before breakfast. It was awesome. I can do it again, right?

I want to write about confidence, and how it comes and goes in waves. Sometimes I am taken back when I notice how nervous and uncertain I really am underneath my outwardly calm persona.

I want to write about how I just spent three days among strangers and not one of them seemed to notice that my hands were different. Or maybe I was just too oblivious to notice.

I want to write about being in an airport, surrounded by hundreds of people and making eye contact with some of them and wanting to know their stories, but not knowing how to begin. And in the odd moments of actual conversation, how I suddenly became nervous and wanted them to go away because I couldn’t hear them very well.

Or how, going out to dinner with colleagues in a very crowded and noisy restaurant was so frustrating because I could not hear the person on my left at all. Fortunately, he wasn’t talking much. Would having a hearing aid have helped this situation, or would it have just made everything else louder? Do I really want to go back to the hearing specialist and risk getting a glob of silicone stuck in my ear again?

So there’s some topics to pick up on next time I have a moment.

For now I shall catch up on sleep.





Eye Feel Fine

On Monday afternoon I went to my eye doctor for my yearly checkup. As I was driving there, I was thinking about how good my eyes have been doing lately, and that maybe seeing the doctor every year wasn’t really necessary. Still, knowing all the eye issues many of my EEC friends face, I figure it’s best to be proactive and see if I can’t stave off future eye problems before they start.

I see a corneal specialist, because several years ago I went to a regular eye doctor and she was horrified at the state of my poor eyes. At the time I was in my mid-20’s and I was suffering immensely from dry, painful eyes. Plus, I’d had several injuries to my right eye, which had left me with scarring. It got so bad that I’d be driving to school in the mornings (eastbound, of course) and the sun shining in my eyes felt like daggers. I would have tears running down my face and my sunglasses would be getting fogged up from all the heat and moisture. It’s amazing I didn’t have an accident. At night, I would wake up and my eyes felt like they were glued shut, or like the inside of my eyelids were sheets of sand paper. So, long story just a little bit longer, (as my high school chemistry teacher would say), I saw the corneal specialist and he prescribed me with antibiotic ointment to help heal my eyes, plus a strict regimen of moisturizing eye drops and lubricants.

Fast forward about 10 years, and here I am today. The doctor said that my eyes are stable and that there has been no change since last year. I still have corneal fibrosis (scarring) and chronic keratopathy (inflammation), but it is being kept under control by the eye care routine I follow. He said he doesn’t need to see me again for two years, unless I have a problem in the meantime.

Excuse me while I do the dance of joy. Not that I mind going to see him, but just that, hey, at least I don’t have to worry so much about my eyes for now!

I realize I’m one of the lucky ones. A lot of my EEC friends have a much worse time with their eyes. It’s a very frustrating and disheartening feeling to not be able to see normally, or to constantly suffer from eye pain.

I wanted to share my eye routine in case it might help anyone else.

Eye care routine
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1. Every night as I get I ready for bed, I put Soothe Nighttime ointment in my eyes. That’s right. IN the eyes. I pull open my lower lid and use a q-tip to put about 1/8″ of goop in there.

2. When I wake up in the morning, my eyes are often really sore, so I will splash warm water on my face, or sometimes use a warm washcloth. It helps get the blood flowing, I think. (I don’t really know – it just makes everything feel better.) Then I put in my first dose of eye drops. (I really like the TheraTears Liquid Gel, but the Soothe drops pictured above also work.)

3. TheraTears SteriLid is a foaming cleanser which I use every morning in the shower. You just squirt a little on your fingertips and rub it on your closed eyes, around the lashes and such. It has tea-tree oil in it, which gives it a nice little zip (and kills germs.)  I sometimes use this cleanser at night, especially if I feel an eye flare-up coming on.

4.The Johnson & Johnson baby shampoo is also a nice, mild eyelid cleanser. I wear eye makeup to work, so I find the baby shampoo helpful in removing it.

5. Not pictured – Vaseline. I used Vaseline on my eyelids for nearly my whole life, until I found out about the nighttime eye lubricants. I still use Vaseline to remove eye makeup, but that’s about it.

6. Eyedrops are used multiple times throughout the day. First thing upon waking, then again after breakfast, and once more before I leave for work. Ideally I would use them once or twice a day during work, but often times I don’t. I put in another dose when I get home from work, and then again after dinner.  So that’s about 4-6 times a day. When my eyes were worse, I would do it more often.

A note on the eye drops. Make sure to use preservative-free, lubricating drops. The preservatives are what make other eye drops (like Visine) sting and will not help heal your eyes.

And that’s that. I’m totally late for work now. But I hope the eye info is useful to you!


The Umbrella Story

What super power would you have? Why, invisibility, of course! Sure it would be nice to fly, or shoot lasers out of my eyes, but to be invisible . . . now that would be really cool.

umbrella boy

One spring afternoon in Music class, we were learning a song about the rain. On the handout there was a drawing of a boy walking through the rain with an umbrella. As I often did, I doodled on the drawing, beginning with shading his rain boots. Absent-mindedly, I continued embellishing the drawing until I came up with an amazing idea. Imagine an umbrella with curtain-like sides, so you could be completely hidden from view while using it! I could picture myself taking a walk through the park, strolling along in my own private room while passersby were completely uninterested in looking at me.

That afternoon I leapt off the school bus and ran to the house, eager to build the prototype. In the mudroom, I located the big Mary Poppins-style umbrella, grabbed a roll of duct tape and the rag box – which had some old bed sheets in it. I brought all the supplies out into the yard and painstakingly taped the mis-matched, paint-spattered sheets around the umbrella. I taped each sheet together to ensure that there would be no gaps through which I could be seen. My friend Chrissy came over to see what I was up to, determined I was nuts, and went home to watch Saved By the Bell.

I wasn’t the only one with this idea.

About an hour later, my umbrella creation was ready for a test run. I climbed under the sheets and hoisted the heavy contraption up off the ground. I’d failed to consider how I was going to navigate under this thing. After a few cautious steps around the yard, it was determined that an adjustment was needed. A section of sheet was removed and replaced with an opened-up black trash bag. The bag was transparent enough for me to see through, but not so transparent that anyone would be able to see me inside it. Brilliant! By then, it was time for dinner, so I closed the umbrella-contraption and tossed it into the mudroom, feeling accomplished.

A few weeks later, Joanna was visiting for the weekend. As usual, we spent much of the time lying around complaining about how incredibly bored we were. Then I remembered the umbrella. We decided to take it out for a walk around the park. It was big enough for the two of us to walk side-by-side in it, but it was awkward trying to coordinate our pace and not tread on the sheets which billowed around us. We made it across the parking lot to a bench near the tennis courts, where we sat down, still inside the umbrella.

Two teenage boys had just finished up a tennis game. They had probably seen us approaching the bench, like an enormous drunken jellyfish. They exited the tennis court and began walking towards us, their curiosity piqued. Joanna elbowed me in the ribs. “They’re coming over here!” she gasped, “let’s get out of here!”  I grabbed her arm, “No! Sit here – let’s see what happens!” For some reason, I didn’t expect them to actually come over to us. But they did. One of them tapped the top of the umbrella with his tennis racket. “Hello? What is this?” he laughed. We sat, paralyzed with a mix of excitement and fear. The other boy pulled back one of the sheets and peeked in. “There’s a couple of chicks in there!” he exclaimed. The other pushed him aside to have a look. “Naw, they’re just kids.”

As soon as they turned and began walking away, we leaped up from the bench and began running back to the house as hard as we could. If walking in a coordinated fashion had been difficult, running was proving to be impossible. The heavy umbrella wobbled uncontrollably in our hands. Joanna tripped on one of the sheets, ripping it from the umbrella as she fell. I kept running, still holding onto the umbrella as the remaining sheets flowed out behind me like a horse’s tail. Joanna kicked her legs free of the sheet that had tripped her and desperately continued running. Breathless, we reached the safety of the yard, where we collapsed into a screaming, laughing heap of sheets and mangled umbrella.

So much for that invisibility cloak.

Exploring Ectrodactyly with EEC Chick

Fun times in our pool!
Check out my crazy toe!

As the name implies, ectrodactyly is a prominent feature of EEC. Ectrodactyly just means missing fingers (or toes). If you ask me about it, I’ll say that I don’t think about ectrodactyly much and that it really hasn’t been that big of a deal in my life. Which in some ways is true. It has not caused me much physical discomfort, and in general I have not let it affect my self-confidence or social life. I had no difficulty learning to walk, tie my shoes, write, draw, play the piano, sculpt clay, or even type. Ectrodactyly never holds me back! Except that at times, my perception of it does hold me back. I have never had a professional mani/pedi because I don’t want a stranger touching (or even looking at) my feet. I’ve never found a pair of high heels I can walk in without agony. In fact, most ‘cute’ shoes are uncomfortable for me. I’m still timid when it comes to baring my feet in public, though I’m working on that one.

I just walked down these stairs with two different sized feet... no big deal.
I just walked down these stairs with two different sized feet… no big deal.

I was lucky because my ectrodactyly did not limit the function of my hands or feet. I only needed to have surgery on one foot, and that was because the “big toe” stuck out so far that wearing a shoe was a challenge. The surgeries were done when I was really young, before I started school. I have tons of pictures of little me walking around the house with a huge boot on my foot. It’s amazing I was able to walk without tripping, when I can barely do that now without a cast on my foot. . . .

The first toe surgery didn’t work, so we went to another doctor and I had a second surgery. The doctor was really nice and the day of my surgery he actually came into the pre-op waiting room and picked me up and carried me into the operating room. It was much more comforting than being wheeled in on a gurney. That may also have been the time that they offered me different fruity scents for anesthesia. Regrettably, I chose banana.

The procedure was simply to cut a wedge of bone out of the toe and fold the toe inward a bit. They stuck a surgical steel pin through the tip of the toe to hold it in place while it healed. I still have the pins from both surgeries – I’ll post pictures of them in a later post devoted to the various medical paraphernalia I have collected through the years.

I seem to have misplaced my bubble wand.
I seem to have misplaced my bubble wand.

I’m sure I was aware that my hands and feet were different from a young age. I would look at my mom’s long, graceful fingers and wonder if mine would ever look that way. I knew I was different, but everybody was different in some way or another. My hands and feet weren’t a big deal, especially since my cleft lip and palate issues required much more attention.

The first time I remember becoming acutely aware of my hand difference was when I started school. There were probably instances before that where someone might have noticed my hands or feet and asked about them, but nothing sticks out in my memory. What I vividly recall is walking down the hallway at school and seeing kids pointing and staring. It was the first time I saw anyone look at me with fear in their eyes. It hurt to be called names and to be feared by other kids when all I wanted to do was make friends and learn.

Of course, not everyone treated me differently. Some kids were able to look past my outward appearances and were friendly to me right away. Before long, kids got used to me and stopped noticing my hands at all. My feet were always covered by socks and shoes, and so it was easy to forget about them.

Hey kids! Are ya freaked out yet?
Hey kids! Are ya freaked out yet?

One of my favorite places to go as a kid was Sesame Place. I loved the water slides most of all. One year, my cousin Karen took me and my friend Joanna there for my 9th birthday. It was a Saturday, and the park was more crowded than usual. The lines for the water slides were long, and looped back and forth on each other. Karen waited while Joanna and I went on the slides. As we inched our way up the stairs in line, there was a group of boys right in front of us. They were being typical boys, talking roughly and pushing each other around. After a few minutes one of them noticed my feet. “Eww!” He shrieked, “Alien feet!” My heart lurched. The other boys looked and made exclamations of disgust and laughed. They lost interest after that, but this kid wouldn’t give it up.

The line moved agonizingly slow, giving him plenty of time to torment me. In hindsight, I don’t know why none of the other people in line told him to shut up, or why I didn’t use one of my alien feet to kick him in the groin. All I remember is the feeling of shame, that I was gross and scary and shouldn’t be showing my feet in public. When we finally got to the top, I had to get on the slide right behind him. I was so flustered that I didn’t wait for the attendant to tell me to go ahead. I just went, and the cruel forces of gravity pulled me right up behind him. “Eww!” he shrieked again, as my feet brushed up against his back. “Don’t touch me with those monster feet!”  he yelled. Miserably, I grabbed at the slippery sides of the slide, trying to slow myself down somehow. I bent my legs to try to keep my feet from touching him, but our fate was sealed and we slid down together, hating every second of it.

Weeee! (This picture is from a happier day.)

Once I escaped from that nightmare and met up with Karen again, she asked me who the kid was that I’d been talking to. Did I know him from school? I feigned ignorance. I didn’t feel like going on any more slides after that. I dried off and put my shoes back on. We had lunch in the park and then we went home.

I didn’t talk about that moment with anyone after that, but from then on I was hyper vigilant about who I saw my feet. When we went to the beach, I would wiggle my toes down into the sand to shield them from the eyes of strangers. I was embarrassed about the footprints I left in the wet sand as I walked down to the water. I dreaded occasions where I’d have to expose my feet at school. I eventually learned that no one was going to make a scene like the kid at Sesame Place did, but I still felt ashamed and did not want to give people any more reason to think I was creepy.

As I grew up, as a teenager and a young 20-something, I only let a select few see me barefoot. I had such anxiety about my feet that I always kept them covered in public. When I was 28, I decided that I wanted to take swimming lessons again. I’d always loved to swim and thought it would be a great way to get exercise. So I took a class at the YMCA. I wore Crocs in the locker room and on the pool deck, slipping them off for only the time it took to get from the bench to the pool. No one ever commented on my feet, and most likely not that many people even noticed. It helped me build a little confidence, but I wasn’t about to parade around town in a pair of sandals.

It wasn’t until I went to the NFED Conference in 2011 that I really showed my feet to anyone else. I was inspired by the kids I saw running around barefoot or in sandals. Kids whose feet were just like my own. I remembered how good it felt to wear sandals and to feel the breeze on my feet. I went home and bought a pair of flip-flops. I was still shy about showing my feet, so I only wore them around the house and around people I was comfortable with. But it was a start. The next year I brought the flip-flops to the conference and I wore them the whole time. Of course, as soon as the conference was over and I had to return to the “real world”, I covered up my feet again.

Throwing EEC gang signs with my homeboys.
Throwing EEC gang signs with my homeboys.

Each summer I grow a little braver. Last year my company had it’s summer picnic at an amusement/water park (not Sesame Place). I decided to go in the water park. It was the first time in 20 years that I showed my feet (and my thighs) in a really public place. Most people didn’t even notice. In fact, most people were far from perfection in their bathing suits.

It might seem silly that I could be so affected by that kid at Sesame Place. Of course, he wasn’t the only kid who ever commented on my digits (or lack thereof). Maybe he was the straw that broke the camel’s back. Despite all the physical pain I’ve been through with my oral/maxillofacial/dental surgeries and my ear surgeries, it seems like the hardest thing for me in this life is accepting that I look different, and that people notice. It is something I have battled as long as I can remember – this feeling of not looking the way I’d really like to. I have come a long way in terms of accepting my looks, but I still have a long way to go.

I am always grateful that my hands and feet work so well. Not everyone with ectrodactyly is so lucky. I have enjoyed compliments on my drawing and penmanship skills. I can walk for miles and hike mountains without my feet giving out. I am fortunate, I know. Feelings of shame about one’s appearance are incredibly powerful and difficult to break away from. I know I am not alone in struggling with this. I have had friends who struggle with body image for other reasons, and so I know it is a common struggle, especially for women.

So there it is. My experience with ectrodactyly. I forgot to write about being called Ninja Turtle hands or Three Fingered Monster, but the moral is the same. Pick on someone about their looks and they get a complex about it. Don’t do it. Don’t make fun of fat people, or people with crooked faces or disfigurements. They didn’t ask to look that way. Look past whatever outward flaws a person has. You might just find that they are worth getting to know.

Color Me, Don’t Color Me

The year is 1991. Kids really do wear their hair in aqua-net-encased creations of spiked mullets and towering bangs (the grunge wave has not yet reached our suburban landscape). My personal soundtrack consists of anything REM, the Bryan Adams’ single “Everything I Do”, and Disney’s Little Mermaid soundtrack. I think I am turning out to be pretty cool.

This is actually my 7th grade picture, but I had the same glasses in 6th grade so just go with it.

I have just started the sixth grade at Log College Middle School, and while I would never admit to actually liking school, it’s going pretty well so far. One day a teacher asks me to run a note to the principal’s office during class. The hallway is strangely empty and quiet without the usual between-class hustle and bustle. I walk briskly and cheerfully towards the principal’s office, enjoying my few moments’ escape from the classroom. At the far end of the hall I notice another girl walking toward me. As she gets closer I see her face is crumpled in a frown. Her lip curls up in a sneer.

“Why don’t you get some markers and color your hair?”

My heart leaps to my throat. Markers? I am so taken back by her strange statement that all I can do is look at her with a stunned expression. My face grows warm and I quickly turn away and walk faster towards the principal’s office. “Markers!” She yells at my back with a laugh.

Which color should I choose for my hair?
Which color should I choose for my hair?

By this time in my life I am used to kids finding something about me to make fun of, or to be freaked out by. I’ve come to expect it.  For the most part I’m able to ignore the stares and the whispers, but the feeling of being different and weird never really goes away. Still, there is always some hope that I can get through a day without anyone commenting on my looks, or pointing out how I’m different. 

A few days later, I am walking down the hall with a group of friends and I see the girl coming towards me again. I tense up and wait for her to strike. Our eyes lock as she approaches. She wrinkles up her nose and mutters “Get some markers, and color that white hair!” as she passes. “Shut up!” I whisper, feeling embarrassed. My friend Emilee turns around. “Were you just talking to that girl?” She asks. “No, it’s nothing,” I assure her.

Weeks go by and this continues. I don’t see this girl every day, but whenever I do she sneers and says something about markers. One afternoon in the library, I come across the yearbook from the previous year. I flip through and look at all the kids a year ahead of me. I spot her almost immediately, with her jaunty grin and cold eyes. The text beneath the picture says Moonbeam Landingham.

Wait, what? I laugh out loud right there in the library. Her name is actually Moonbeam Landingham. It’s like a made-up name! I am delighted with this revelation.

The next time I see her in the hall, she asks me if I’ve got any markers yet. “No, Moonbeam,” I retort, “Do you have any I could borrow?” Her eyes widen. She scurries up the stairway and I call out her name after her once more.

Moonbeam* never bothered me again after that.


Her name wasn’t actually Moonbeam Landingham, but it was something similar. I always wondered if her parents were hippies or if they were just having fun playing with an unusual last name.

While at the time I passionately hated “Moonbeam Landingham” because of the way she treated me, I have since realized that she probably had issues of her own that she was dealing with and maybe it made her feel powerful to pick on someone like me. With a name like hers, she probably got picked on herself.

What I learned from that experience was that sometimes all it takes to stop someone from bothering you is to stand up to them and show them you won’t take it. In this case, it took me discovering that this girl had a funny name to give me the courage to speak up. I’ve also learned that oftentimes people who are mean to others are really unhappy themselves. Of course that doesn’t give anyone the right to be mean, but it’s a reminder that it’s THEIR problem, not yours.

Speak the Truth, Even if Your Voice Shakes

The following TED talk resonates with me in so many ways; some of which I will explain below. In the video, Ash Beckham talks about the difficulty of coming out of the closet.  When you hear ‘coming out’,  you may think it only applies to gay people, but there are many kinds of closets and many kinds of ‘coming out’ moments. As she says, all a closet is is a hard conversation.

When you keep the truth about yourself a secret, you are essentially holding a grenade.

Writing my story here is a way to help me continue coming out of a closet of my own, and maybe inspire you to come out of yours. While in some ways my EEC is obvious – anyone with eyes in their head can see that I have scars and physical imperfections – in many ways I have spent my life trying to conceal this uniqueness from others. This was especially true throughout my school days, when I would rather have died than try to explain my condition to my classmates. I was ashamed of being different and wanted nothing more than to look ‘normal’ so that people would get to know ME instead of judging me on my appearance. Even as an adult, I sometimes found it difficult to go to new places because I was certain that people were staring at me and judging me the whole time.

It wasn’t until I was in my mid-20’s that I began to expand my circle of friends, and in turn, the scope of my social awareness. One summer evening I was at a cookout hosted by some lesbian friends. I looked around at the group and began thinking about how they had all made decisions to ‘come out’ with their identities. They weren’t ashamed of being different, and they didn’t seem concerned with how people would perceive them. Instead, they knew who they were and how they wanted to live and they went for it. They didn’t hide or pretend to be straight. Some of them weren’t even concerned with whether or not they looked female or male. In that moment I made the correlation to my own identity and how I had chosen to express myself. I knew that I wanted to be more “out” about myself and stop worrying so much about what other people would think. I wanted to be confident in myself the way these women were.

Of course, there is some distance between thinking about doing something and actually doing it. Plus, it’s not like coming out about a health issue is as edgy and cool as saying you’re a lesbian. What I really had in mind was to be able to look someone in the eye and answer their questions without blushing or stuttering and feeling like an undesirable. I wanted to change my attitude from “I know I’m weird. Sorry if it’s freaking you out. I’ll leave now” to “Yes, this is who I am. If you don’t like it, it’s your problem, not mine. I have just as much right to be here as you do.”

In the summer of 2011, several years after I’d had my lesbian-inspired epiphany, I found myself at the NFED Family Conference in St. Louis. I wrote about that experience here. Attending the Conference encouraged me to come out of my shell even further. It was a reminder that there are other people out in the world who are just like me. Other people who have successful careers and families and happy lives. They weren’t hiding their ectodermal dysplasia, but instead were living with it and dealing with it, not letting it hold them back.

Throughout this time, there were a series of experiences and people who inspired me to continue to open up and accept myself, flaws and all. It’s not easy to always be open and confident, but like anything else, the more you keep trying to do it, the easier it gets. I still feel like I have a way to go, and I expect that it might be a lifelong challenge for me. Fortunately I have many inspirational and supportive people in my life, and talking about it definitely helps. Talking to people always puts your own challenges in perspective.

As Ash states in her talk;

Hard is not relative. Hard is hard. We all have hard.

Steps to come out of your closet, or to have a hard conversation:

#1 Be Authentic

#2 Be Direct

#3 Be Unapologetic – Never apologize for speaking the truth

The only story that matters is the one you want to write.

Tears for Ears

Today I had planned to write a post about the process of getting fitted for a hearing aid. My “bad” ear is finally healthy enough that my doctor said I can try a hearing aid. My appointment with the audiologist was only supposed to be an hour long. I told my boss I’d be in to work a little late, no big deal. I should know by now that anything I anticipate being a “quick, easy appointment” is almost guaranteed to end up a fiasco.

downward spiral

All was well for the first hour – really. I tried on a hearing aid, we adjusted some settings and I discovered what it is like to hear in stereo (trippy!!). The only issue was that the little earpiece was just a bit too big, so we decided to have a custom piece made. I’ve had earplugs made before so I just assumed this was a similar technique, a simple ear-molding process.  I know, I know… I ought to know better.

The audiologist squeezed a syringe full of silicone into my ear. I couldn’t see how much she put in until she walked away. It seemed like a lot, but whatever. She knows what she’s doing, right?

As the silicone cured, we discussed what color ear piece I’d like, and filled out some paper work. Then came the fun part. My ear is somewhat sensitive, thanks to having three major surgeries – one less than 6 months ago. So I expected that it’d be a little uncomfortable having the mold pulled out. However, this mold was not coming out. The woman pulled on my poor ear, and twisted it and grumbled at the difficulty level of this removal. She tried again. I began to squirm and say “ow!” a few times. Then it got ugly. She pulled and twisted some more. I dropped an F-bomb or two. Finally I pushed her away and said,

“Let me do it.”

I twisted the damn thing until the outer part broke off. Now I was left with a silicone plug stuck in my ear canal. But it felt a little better to have gotten part of it off at least. My doctor, of course, wasn’t there because he was in surgery. Luckily the Physician’s Assistant was and she made some attempts to pull the piece out, but by then I was really upset.  I tried my best to control it but before long I was losing my cool.

crying-aby-with-hands-on-head-300x256It’s true. I lose my cool sometimes. As I lay there flinching every time she tried to yank the thing out (there was a little string attached), I could feel the sobs climbing their way up from deep inside, and I’m sucking air in and out like a toddler who has just thrown a tantrum.

“If you’d just relax, I could get it out!”

I squeeze my tear-filled eyes and will myself to relax, to stop tensing my shoulders and turning my head away. But how do you make yourself stop having reflexes? I want to freak out. Every time she pulls on the string it feels like she’s pulling something out of my inner ear. I’m convinced that the silicone has filled my mastoid cavity and every time she pulls it, the skin graft is being ripped off. I can’t control myself. Why do they not have tranquilizers in here?

We take a break so I can remove my sweater and blow my nose. The P.A. leaves the room for a few minutes. The audiologist, who has stood shyly in the corner this whole time tries to excuse herself for this mistake. She says she didn’t know I had a mastoid cavity, or she wouldn’t have put the silicone in it. (Seriously!?)

The P.A. comes back in and tells me she’s spoken to the doctor. I guess she had him paged. He’s going to come into the office after surgery and he will remove it then. So I can come back at 2pm and it will all be good! Somehow I fail to find any relief in this proposition.  I’m already an hour later for work than I expected, and now you want me to come back later? Also, I can’t stop crying.
screaming babyI leave the office in a barely composed state. Down in the parking garage I let myself cry like a maniac for a few minutes and then I drive home. screaming and crying the entire way. Even as I am behaving this way, I know it’s ridiculous. This silicone-stuck-in-my-ear moment is just that – a moment. Yeah, it sucks, but is it going to alter the course of my entire life? Probably not. It certainly altered the course of my day though. I have to take the rest of the day off, so I miss an entire day of work, and not for anything fun. I lament that this kind of crap *always* happens to me! Why me?  Waaa! Boo hoo!  Woe is me!

So now it is nearing the time in which I must return to the doctor and get this POS ripped out of my ear. I’d hoped I might be able to do it myself but so far no luck. Stay tuned – I will post an update of the torturous events that transpire later today.


– 3 hours later –

I can now report that I lived through the removal process. It wasn’t pretty and I may have let slip some more rude language, but the stupid thing is out of my ear now. Earlier, the P.A. told me that it’s a common occurrence that people who’ve had mastoidectomies don’t like to have anyone touch their ears except for their doctor. I thought this was a weird thing to say, but I have to admit, there seems to be some truth to it.  I was more relaxed having him work on it. I trust him and I know he knows what he’s doing, or at least he pretends he does. 

It seems that today I was the talk of the ENT office. All eyes were on me as I came in, and then once the doctor arrived and we went into the exam room, we were accompanied by TWO assistants and the audiologist. I don’t know if they had plans of physically restraining me or what, but it was pretty crowded in there. It reminded me of my days of being a specimen for medical students whenever I’d stay overnight at Children’s Hospital of Philadelphia.

There’s a story for another time.

Happy Birthday to my Mommy

Mom’s Birthday 2014

Today is my Mom’s birthday.

Mom and I go way back. As her firstborn, I got to break her in to the whole motherhood thing. This arrangement worked out pretty well for me. (I’m just a little bit spoiled.) For her, I may have raised her blood pressure a bit but overall I think what I put her through may have made raising three additional kids a piece of cake.

Coming at ya from 1982.
Coming at ya from 1982.

Mom was always really good at taking care of me when I was not feeling well. She’d set me up on the sofa with pillows and blankets, make sure I had something to drink and that I took my medicine on time. If I was able to eat, she’d make me soup or spaghetti (my favorite), cut into tiny pieces so I wouldn’t have to chew much. She’d clean up my barf and comfort me as I cried. She’d say things like, “I wish I could take the pain away from you.  I wish I could have the surgery instead of you.” As a child I couldn’t understand why she’d want such a thing, but if it had really been an option, I would have taken her up on it. It wasn’t until I was an adult and I got to be the one wringing my hands in the waiting room that I understood how she felt.oh beautiful for spacious skies

Of course, I have happier memories of my early life with Mom. She shared her love of reading with me, which is a gift that will last a lifetime. She also shared her passion for the outdoors – the smell of the woods in autumn, the sight of a hawk in a tree, and a heart-swelling appreciation for the ever-changing beauty of an expanse of sky.  She was always a creative thinker and came up with so many fun things for us to do. We had a pebble hunt, like Pooh and Piglet. I was encouraged to write my own stories and illustrate them. When I wanted to learn to play the piano, she drove me to lessons and somehow did not lose her mind listening to hundreds of faltering renditions of ‘Fur Elise’ and ‘Hey Jude’.piano-kid-playing-pic

Mom’s lifelong pursuit of knowledge, of thinking for herself and reinventing herself when necessary, has been the most inspirational to me. She is most definitely a self-made woman and I continue to learn from her. Her life has had many ups and downs and she has worked her way through many difficult situations. When I look back to where we were even just 5 years ago I am amazed at how much has changed. Looking back 15 or 20 years is even more astounding. 

So thank you, Mom, for all you’ve done for me and our family, and above all for being a kind person whom I am proud to call my mother.


I told my sister that if she wanted to name her daughter Isabella, she’d better be sure she would be pretty. You can’t have an ugly girl named Isabella.

Yeah, or else the boys will say things like, “Bella… not!”

My co-workers laugh. I smile awkwardly, hoping they cannot sense the lurch in my stomach the moment the phrase “ugly girl” hit my ears. The first adrenaline-fueled thought I have is that the two of them are sharing a laugh about me. Instantly I am transported back to middle school, all awkward limbs and unruly hair, hunching over to make myself smaller and less noticeable. Every day, I silently pray that no one will say anything mean to me. I dive wholly into books and my own imagination in order to escape the constant feeling of discontent with my status as “weird/ugly/creepy/freaky/unlikable girl”.

Do these women have any idea what it’s like to be called ugly? Probably not. They are both young and pretty. When they were in middle school their worries were likely centered around which boy to go out with and how to spend their babysitting money.

The conversation ends moments later, after the two of them agree that it’s inappropriate for unattractive people to have nice names. By now I’ve calmed down and realized the absolute inanity of the discussion. It’s so superficial and dumb that I can’t even think of a fitting response, so I smile again (unconvincingly) and turn back to my desk.

Throughout my life I have learned a great deal about judging and being judged by appearance. Of course I am not immune to people’s looks. I definitely notice when a person has attractive features – after all, I have taken plenty of art classes wherein the ideal facial proportions (or golden ratio) was studied ad nauseam. However, I do not automatically assume that having a lovely face equals a kind soul.

My own self-image is a dichotomy between feeling attractive and confident that my beauty radiates from within, vs. feeling homely and hopeless. I most often feel confident in my appearance and only occasionally feel lousy and low. It has a lot to do with my mood and my ability to project confidence and kindness and other attractive qualities. When I do feel bad about my looks for whatever reason, the feeling usually passes after a short period of moping and feeling sorry for myself.

When I think of the people I care about most in my life, I don’t categorize them by their physical characteristics. My family and my best friends are beautiful to me, whether they fit the textbook definition of beautiful or not. When I look at pictures of myself, I am sometimes disappointed to notice that my nose is crooked, or that one eye droops more than the other. And then I look closer and see the happiness in my face, and in the faces of those around me and I don’t worry so much about looking perfect anymore.

A Whiter Shade of Pale
A Whiter Shade of Pale

Thoughts on Bullying, Part 1.

Every Friday morning, NPR airs a short segment called Story Corps. I often catch it on my way to work. Last week, it was a story told by a father whose 14-year-old son committed suicide after being bullied relentlessly. In recent years, there have been a lot of stories of kids killing themselves after being bullied. My heart goes out to these kids and their parents, of course.  But this past week’s story got me thinking about bullies and the effect their victim’s suicide has on them.  Does it make them stop bullying? Do they even realize how their actions have so drastically affected someone else’s life?  Do they even care?

"I just don't fit in!"
“I just don’t fit in!”

When I was a kid, there were bullies at my school whom I avoided as much as I could. Even now, my stomach sinks to think of how insecure and helpless I felt in their presence.  At the time, I didn’t give much thought as to why they would be treating me the way they did.  I took the burden of blame on myself.  I was an unusual looking kid with a funny little voice, so I accepted that they had reasons to make fun of me.  Of course I wished they would find some other way to pass the time, but I just assumed they were wholly mean and bad kids.

Now that I’m an adult I am aware that oftentimes bullies are bullies because they’ve learned this behavior as a way of raising their social rank, to make up for their own shortcomings and insecurities.  They bully to establish dominance and control. They’ve often been bullied themselves. So I wonder, if a bully’s victim commits suicide, does the bully feel vindicated because it proves (to them) that the person was weak and worthless? Or do they suddenly realize that the kid they were always picking on was actually a whole person, with feelings and potential, and had a family that loved him?

I tried being a bully once. At recess one day I noticed that a chubby Italian boy was wearing a football jersey with the name Meatball across the back instead of his last name. I poked him and jeered “Ha-ha, it says Meatball because you’re fat!” totally failing to grasp that that was the joke. He raised his eyebrows before rolling his eyes and walking away. While I’d initially felt an adrenaline rush for having stepped out of my comfort zone, I was left feeling like a jerk and definitely did not gain any power from the interaction.

Whenever I hear of a bullying-induced suicide, I think back to my own experiences and how, no matter how much crap was dealt, I never felt compelled to kill myself. I certainly did have days of feeling worthless and despicable. There were a lot of times where I would feign illness in order to stay home from school so I wouldn’t have to deal with another day of being told I was hideous, freakish and unlikable. I was fortunate to have a stable home life and siblings who loved me for who I was and who never looked at me with disgust because of my physical appearance. I was also lucky to have friends outside of school who were able to see past my outer appearance and who appreciated my wild imagination and sense of humor.  And while I was at school, my wild imagination kept me company even in the worst of times.

So if you are reading this and you are a victim of bullying, please hang in there. You can grow up to be so much stronger than your peers because you have put up with this. Don’t let other people determine your worth. Remember your strengths and keep pushing ahead with them, whether it be academics or art or music or sports. Do what makes you happy, and be yourself. There is so much more to life than what happens in school. It’s hard to realize it now, when it seems all that matters is who you sit with at lunch, or that your clothes have the right label. It may seem like an eternity before you will be out of school, but one day it will come and life will open up to you. In the real world there is a place for everyone, and thanks to the internet, you can find people all over the world who are “just like you” in one way or another. 

Musings of an aspiring renaissance woman

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