Touchy Feet

My next toastmaster speech project is supposed to be a “touching speech,” It’s practicing  how to convey emotion through storytelling. Instead of just saying “Billy felt sad because he wasn’t invited to Joey’s birthday party”, you’d tell the story of Billy watching his friends pass by on their way to Joey’s party and wondering why he wasn’t invited.

I’ve been trying to decide what to do for my touching speech. I thought about telling my Color Me story, about the time the girl at school rudely suggested I use markers to give my hair some color. But then I had a crazy idea. Something that would really push me beyond my comfort zone in a big way.

I could tell the story of that day at the water park when that boy made a scene over my alien feet. I could talk about how ever since then, I have gone to great lengths to hide my feet – not only from strangers, but even from most acquaintances.

The kicker (see what I did there?) of it all would be that I would either walk up to the lectern in my bare feet, or I would wear shoes I could easily slip off to reveal my feet as I told the story.

But I’m not sure…. is it cheating to use my body as a prop? Is it overly dramatic? Would I be able to do it without peeing my pants in front of everyone? I practically hyperventilate at the thought of it, yet that only makes me want to do it more.

I don’t know. I’ll have to think about it.

What would you do?

Show Me Your Hands

Yesterday I found out that one of my followers on Instagram is a devotee


I knew this might happen when I went public with the blog and put a couple of videos on YouTube. 

My first reaction to finding out that someone is looking at pictures of me solely because they think my deformed hands or feet are sexy was one of feeling physically ill. I felt like my privacy had been violated somehow. 

After taking some time to mull it over, I began to wonder if it was really any worse than finding out someone was attracted to me because I had blonde hair or because they liked some other feature, such as my fine ass. (I kid.) Either way, it’s objectifying me down to whatever part it is they are turned on by.

Then I thought about celebrities and how all kinds of people are admiring them from afar and likely including them in sexual fantasies all hours of the day and night. So maybe if I have one or two guys scouring my blog or Instagram feeds trying to find pictures of my hands and feet (of which there really aren’t many), what harm is there really in it?

This person suggested that I could make money if I posted videos of myself doing stuff with my hands or feet. Not even sexual things, but just regular things. Somehow that is a huge turn on. 

I’m kind of glad I found this out now, as I was considering making a video of myself playing the piano and sharing it here and on YouTube. Scratch that! 

Maybe I am being too sensitive about it. If someone wants to diddle themselves while watching a completely nonsexual video that I posted online, why should I worry about it?  It’s completely within my control whether I feed into it or not, and I choose not to. 

To my friends with ectrodactyly, if someone asks you to send pics of your hands, I have a few choice photo responses you can use. 


Jazz hands!


No pics for you, wanker.


Straight up nope.


I’m curious to hear from others. Have you been contacted by a devotee? How did you react? Do you think it’s a harmless side effect of making your presence known online? Or are we boarding the train to creepy town when we interact with these people?

Are you a devotee? Why are you attracted to disability or deformity? I can understand being interested from a curiosity standpoint, but why is it sexual? 

Lobster Girl

No one’s ever called me a lobster girl, at least not to my face.

Dave and I recently started watching Carnivale, the short-lived HBO series about a traveling carnival in the 1930’s. I’m hooked already!

In one episode, the main character, Ben, is sent out to find a lobster girl to bring back to the show. He finds her in a dilapidated shack. She doesn’t speak. It’s her only scene in the episode, and it’s not flattering whatsoever.

I looked up the actress after the episode and found that it was Cathy Berry, who is Grady Stiles‘ daughter. The Stiles family were freak show performers who called themselves The Lobster Family. Their story is pretty depressing. Look it up later, if you don’t know it already. Or don’t. Maybe it’s better you don’t know.

Bree Walker, another well-known person affected by ectrodactyly, also appears on this show in later episodes. I haven’t yet seen her performance as the Scorpion Queen, but from what I’ve read it is a more positive performance than that of Lobster Girl.

Speaking of Bree Walker, I read an article about her in Guideposts Magazine when I was a kid. Aside from our family friend Suzanne, I hadn’t met or heard about anyone else with ectrodactyly. My mother encouraged me to write a letter to Bree to tell her she was an inspiration. I was excited. I wrote to her and told her a bit about my 9-year-old self. I’d never written to a famous person before but somehow I expected to hear something back. Alas, it never happened, and I’ve always felt a bit bitter about it. Though all these years later, I guess I’m doing just fine without her. Alcoholism and plastic surgery have not been kind to her.

Bree Walker then and now.

Moving along. I had several points I wanted to make about ectrodactyly and freak shows and disability.

First of all, I’ll say that I am glad that traveling carnivals and freak shows are not a thing anymore. While you can find them if you look hard enough, the people participating in them have chosen to be there. At least I hope so.

One of my Facebook friends is a performance artist who calls himself the Black Scorpion. I think it’s cool that he has embraced his uniqueness and emphasized it in such a fashion. Pretty much everyone else I know who has ectrodactyly has a job or career that doesn’t highlight their digits (or lack thereof).

My ectrodactyly isn’t something I spend a whole lot of time thinking about. When I go out in public, I do not hide my hands. Appearance-wise, I am usually more concerned about how my hair looks or what kind of wardrobe malfunction I’m about to have. As long as I’ve got shoes on, I’m not thinking about my feet at all. See my previous post for more info on my foot-shyness.

Some people (like the Stiles family mentioned above) have more debilitating ectrodactyly that affects their ability to walk. In this case I can see ectrodactyly being called a disability. But for someone like myself who is able to walk and have full movement and strength of arms and legs, it’s not a disability at all. In fact, I have a hard time picturing what I would do with a full set of fingers. I don’t know if my brain could handle keeping track of all those extra digits. I’d be typo-ing all over the place, and poking myself in the eye when I tried to scratch my nose.

One other ectrodactyly-affected person I wanted to bring up is Meg Zucker. I learned about Meg and her blog, Don’t Hide It, Flaunt It, several years ago. Meg’s mission is to get people to be proud of their differences and not be ashamed of the things they can’t control. She is a great role model for anyone with a difference who feels that they need a little encouragement to get out and flaunt.

As for me, I can’t say that I consider myself a flaunter, aside from my activity on this blog. I do get out and meet lots of people through my job and through my volunteer work. I’m not ashamed of my hands, or the scars on my face, but I don’t exactly run up to people and show them off either. I just live my life. Some days things happen that remind me that I’m not average. Some days that can bring me down a bit. But not for long.

I can do a lot of things with these hands. Too many things to list. The only thing I can’t do is give people the finger. It’s probably a blessing in disguise because I’m sure I would have caused a road-rage incident by now if I’d been able to flip off all the people I’ve wanted to.

Maybe I should focus on making heart shapes instead.


I love my hands!

Of course there are a lot more people affected by ectrodactyly than I’ve mentioned in this post. It’s possible that you’ve met one or two and did not even notice. We’re everywhere! We are writers, teachers, artists, architects, builders, movers and shakers.

Ectrodactyly might seem frightening when you first learn about it – especially if it is your child who is affected. But the more you see others with this condition who are functioning normally, the more you realize that it is just a minor detail.

Fingers, shmingers! Who needs ’em?

Throwback Thursday – Autobiography of a 16 Year Old Me

In my junior year of high school I took a developmental psychology class and loved it. One of the projects in the class was to compose an autobiography and pay attention to the stages of development throughout our lives.  So here is what I wrote, with a few edits for brevity and privacy. Even with my edits, this is super long, so I’m going to break it up into 3 posts. Keep in mind that I was sweet (and innocent) 16 when I wrote this!

The cover has seen better days.

The cover has seen better days.

Infancy and Early Childhood

I was born EEC Chick in June 1980 to Mark and Susan in Abington, Pennsylvania. I was a healthy 7 pound, 21 inch baby, but it was a shock that I was born with a cleft lip and palate and cleft hands and feet. My mother didn’t even get to hold me right away because the doctor rushed me off to examine me. I had to have many surgeries those first few months of life to close up my lip and palate so I would be able to eat and look presentable.

I was an only child for the first four years of my life. I remember we lived with my grandmother, who I called Gram. Both Mom and Dad worked so Gram took care of me during the day. I started talking at about a year old. My first words were cookie, eye and flower. I began walking in September 1981. I stood myself up with the help of the television stand and walked towards Mom and Gram as they sat on the sofa watching Lawrence Welk.

Our family went to Sunday School and Meeting (Church) every Sunday, so I had friends there from the very beginning. Becky, who was six months older than me, and Joanna, who was six months younger. We had a lot of fun together. Becky’s older brother Ben would play with us too.

I don’t remember much about my surgeries except for the one I had to fix the big toe on my right foot. It stuck out so far that my mom had to cut a hole in my shoe so it could stick out. I remember Mom, Gram and I got up really early and went to the hospital. When we got there we had to wait for a while and then my doctor came and asked me if I was ready. I said I was and he picked me up and carried me into the operating room. There he put me on a table and put a funny mask on my nose and asked what flavor I would like, strawberry, banana, chocolate, or bubble gum? I asked for banana and soon I was sleepily breathing the banana scented anesthesia. I was really grouchy when I woke up. As soon as I woke up I was taken to the physical therapy room so I could learn to walk on crutches. I was really mad and I screamed and yelled until they let me go back to my room and go back to sleep. All I wanted to do was go home! Once I did get home it wasn’t long before I was walking again despite the cast on my foot.

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.

When I was three, my mom became pregnant with her second child. I was going to be a big sister! I couldn’t decide whether I wanted a girl or a boy but my mom told me not to worry, God would choose what it would be. So, 6 days after my fourth birthday, my first brother Kris was born. That year I began taking swimming lessons at the YMCA. I couldn’t wait to begin. I loved swimming in our pool at home and I was ready to make new friends. My mom was nervous about how the other kids would react to me, but her fears were quickly overcome when she met my teacher, Suzanne, who had exactly the same things wrong with her as I did! I had a great time there. Swimming was my favorite, but I also loved arts and crafts and gymnastics too.

Around that time, my great grandfather died. I wanted to go to the funeral but Mom wouldn’t let me. I had all these questions like, would he be naked? What would he look like? Was he going to be a skeleton? And of course, why can’t I go? Mom said funerals weren’t for little girls. Oh well, I had fun because my cousin Karen babysat me and I thought she was really neat. She was 16 and I wanted to be just like her. Not long after that, Gram moved out. She was going to go live with my great grandmother, who needed someone to take care of her. I was very sad that she wouldn’t live with us anymore, but I would still see her a lot because she would be less than an hour away, in New Jersey.

One day I was out playing in the yard when I heard a voice. “Hello, little girl!” At first I was scared because we didn’t have any neighbors and I couldn’t imagine where the voice was coming from. Then I realized there was a woman and a little girl about my age standing between the grapevine and the big pine tree that separated our yard from the next. “Hello, this is Christina, your new neighbor!” said the woman, motioning towards the girl, “and I’m her grandmother. Who are you?” She smiled as I walked over shyly. “I’m Heather,” I whispered “Let me go get my dad.” I ran into the house and found Dad in the kitchen washing dishes. He came outside and talked to the woman. I shyly asked the girl to play and we hit off well. Actually, to say we hit off is rather funny considering how much we fought. It seemed that we finished each of our play sessions with a fight and I would swear that I wouldn’t play with her again for a year, but by the time the next day rolled around we had forgotten about the fight and were ready to play again.

In September 1985, I started Kindergarten at McDonald Elementary School. I was very excited, I couldn’t wait to go to real school like a big kid! The first day came and I climbed onto the enormous yellow school bus that would take me to the even bigger red brick school. I thought Mrs. Schulden, my teacher, was kind of scary because she was so strict. Once, we were taking a test and she had set up books on our desks so we couldn’t look at the person next to us. I was confused about one part and I leaned over to see what the girl next to me put on her paper. (Little did I know that Mrs. Schulden was standing behind me.) She pushed my chair in hard and fast so that my ribs hit the edge of the desk. I tried not to cry, not because it hurt, but because I had done something bad and I felt ashamed.

One day just before it was time to go home, Mrs. Schulden asked if any of us had left an umbrella in the coat closed the day before. She held up a blue plastic handled umbrella with a clear plastic top that had little fish on it. Wow, I thought, that is a really neat umbrella! I raised my hand when I saw that no one else was claiming it. “Are you sure it’s yours Heather?” asked Mrs. Schulden. I nodded, and the umbrella was mine.I told my mom that a friend had given it to me at school. A couple of days later, Mrs. Schulden asked who had taken the umbrella because a girl in her afternoon class had lost one. Everyone knew I had taken it but I claimed it was mine.

Riding the bus was always interesting. Chrissy and I sat together and once we got in a big fight and the bus driver told us that if we didn’t knock it off, he’d send us to prison. That quieted us down quite a bit. We also had problems with boys. Once, I got punched in the nose by one and then Chrissy tried to beat him up before the bus driver intervened. One boy in particular, whose name was David, made fun of me to no end. he called me blondie and was always teasing my friends and I, until one day Mom got on the bus (much to my embarrassment) and told him that if he didn’t leave me alone, he’d have to deal with her. I guess that was a pretty scary thought, because he never bothered me after that.

—- To be continued —

Whew! My hand is tired from typing all that out. Obviously I don’t have the original word document from 1997. Hah. For some reason when I type, I just hold my left thumb up in the air all the time, and after a while my hand starts cramping up. Awkward.

Anyway… If you’re curious to know what I edited out of this wordy introduction to my life, it was about 20 “I remember”s and a section where I talked about the senile old lady who lived next door before Chrissy’s family moved in. How odd that I found that to be something relative to my life when I wrote this autobiography.

Also, it’s kind of alarming to realize how much of my early life I have forgotten. I have NO memory of being punched in the nose on the bus, and I definitely had not thought of Mrs. Schulden or the umbrella I stole in many years. (What is with me and umbrellas?)

I hope you enjoyed this throwback within a throwback. Next week I will post the ‘Childhood’ section, where there was lots of learning and playing and a couple more surgeries to boot.

Throwback Thursday

I’ve decided to liven things up by doing a weekly “Throwback Thursday” post. It will consist of photos, journal pages, and who knows what other mementos I will dig up. Hope you enjoy!


Goofball. Summer 1987

My mom and I were being silly as I got ready for bed. I probably asked her to play with my hair and this was the result. I loved making goofy faces to make my mom laugh.

This picture was taken shortly after my nose revision surgery. If you look closely you can see how red the scars are around the bottom of my nose, plus some of my stitches got infected so I had sores too. Ow.

I feel like this picture sums up how I felt post-surgery. After getting over the hump of feeling sad and wounded, there’s moments of feeling pretty happy and silly.




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.