Category Archives: Living with EEC

Can I Get a What-What?


Being hearing impaired but not wearing a hearing aid (or a sign that says “I’m deaf on the left”) makes for some interesting life experiences. I’ve unintentionally offended people when I’ve seemingly ignored them, when really, I had no idea they were talking to me or talking at all. There have been plenty of times that I have not heard someone clearly and thought they said something totally different than what they really meant. I’ve also had scary moments of driving in my car and hearing a siren and not knowing which direction a fire truck or ambulance is going to approach from. Luckily so far none of the moments have been life-altering. At least not that I know of… perhaps I just misheard.

beethoven

The other day I was in my boss’s office for a meeting. Both of my co-workers were out of the office, so it was just me and my boss. She has a small conference table in front of her desk, where my co-workers and I usually sit. Out of habit, I sat so that my boss’s desk was to my right, which meant that my back was to the door.

We were expecting someone to call in during the meeting, and right on cue, the phone rang. I saw my boss reach out and push a button. Then she said “Hey, how’s it going?”  A voice I was not expecting to hear began to talk. I noticed that he sounded incredibly clear, and lacking that tinny, echoing quality that people usually have when they’re on speakerphone. It was another colleague, and he and my boss chatted amicably for a few minutes. I fiddled with my notebook, and flipped through a stack of papers I’d brought in for the meeting.

Then a weird thing happened. My boss’s phone rang again. The clear voice said “Oh, do you need to get that?”

Wait a second… I thought to myself. How does he know she’s getting another call?

My boss pushed a button on the phone to divert the call. I looked at her and noticed that she kept looking at something above my head. We have a calendar on the door, so at first I thought she was just looking at that. It finally occurred to me that there might be another reason she kept looking my way. Slowly I turned my head to the left and out of the corner of my eye I saw that there was someone standing behind me.

lucy woah

I’m not sure I can describe the feeling I had at that moment. As hilarious as it would have been for me to react as Lucy in the photo above, I did not. I had to spend a few seconds composing myself because I was pretty horrified that I hadn’t been able to tell that there’d been someone standing behind me and talking for what must have been a solid five minutes. I was also worried that I’d appeared rude for not acknowledging him the whole time. I decided to play it cool and not let on that I had just realized he was there. The next time he made a joke, I turned and looked him in the eye as I chuckled at his wittiness. I think I saved face there, but barely. I’m sure my boss was wondering why I hadn’t turned to look at him before that, and why I kept looking at her and at the phone.

Sigh.

Note to self: Avoid sitting with your back to the door. Or, start wearing glasses with side mirrors.

Conference in Review


Last week I attended the 33rd annual NFED Family Conference, which was held in Columbus, Ohio. There was a record number of people registered for conference – over 400 – but it did not feel overcrowded at all.

This was my 5th conference (including the one I went to way back in 1996). Every one I’ve been to has a different “feel” to it. It’s almost as if the conference itself is a living thing – made up of all the people who attend and the atmosphere of the hotel and even the weather, I guess it also depends on your perspective and what role you’re playing in it.

For me, the “feel” of this conference was very calm and down to earth. I was really looking forward to just relaxing and catching up with people, and connecting with new people. I guess that’s my goal every year, but this year it seemed more so. 

photo (2)
Some of the amazing ladies I got to spend time with at conference.

Some of the highlights of this year’s conference were: 

The liaisons hosting a pep rally and game night for the first evening of conference.

Being a “buddy”, which meant that I was assigned to a new family and tasked with helping them feel comfortable at the conference. My buddy this year was a young woman named Mallory and her son Hudson. 

Catching up with old friends – and seeing how my “young” friends have grown since I last saw them.

Meeting new friends and making connections with people I had already “met” online.

Participating in a panel for one of the sessions. It was a general Q&A session for people in the audience to ask affected adults, or parents of affected children anything they wanted to ask. I was one of six panel members, and I enjoyed being part of it. I just wish people had asked more questions! 

Each evening, hanging out with the other adults, either at the bar or in the courtyard. Really, the social aspect of the conference is what draws me back year after year. This year I got to spend a lot of time with Suzanne and her husband Will, which was cool! 

Having dinner with one of my mini-me’s the evening after the conference ended. 

Ally and me
Dinner with my mini-me, Ally.

By the end of the conference, I was exhausted and sick (I must have picked up a bug on my travels), but happy that I had the opportunity to connect and re-connect with my extended NFED family.

Next year we’ll do it again in Colorado Springs! 

Shameless Self Promotion


20140724-202153-73313556.jpg

Opening Night at the 2014 NFED Family Conference. Each family was tasked with making a family crest or banner to display on a wall in one of the shared spaces. I began creating a flag to represent my blog – EEC Chick. As I looked around the table at the other EEC Chicks around me, I decided to share. My friends Terri, Suzanne and Lindsay added their names (and embellishments!) to the flag. Here we are, proudly representing!

P.S.  There are other EEC Chicks out there – these were just the ones who were sitting together that night. 🙂 Perhaps one day we can have an EEC Chick party and gather up every one we know!

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!

Namaste

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!
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.

*Note:

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.

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. 

Swimming with Suzanne


Water. How I have always loved water. Whether it be in a bath tub or a swimming pool, I want to be in it.

Swimming allowed me to be weightless and graceful, while on land I was clumsy and awkward. Being in the pool was like being in another world – one where I never got too hot, and when I felt tired I could just float along and listen to the gentle waves lapping against the edges.

Summertime = Pool Time
Summertime = Pool Time

When I was a young lass of 3 years old, my mother decided it would be wise for this little fish to take swimming lessons. She signed me up for a a program of gymnastics, crafts and swimming at the local YMCA. She also thought it would be a good opportunity for me to make friends and prepare me for kindergarten.

On the first day of swimming class, my mother helped me change in the locker room. Neither one of us had any idea that we were about to meet someone special. I walked out into the warm, humid pool area and lined up with the other children by the edge of the pool. My mom sat in an observation area with the other mothers as the instructor introduced herself. Her name was Suzanne.

Suzanne had hands and feet like mine.

The significance of this was lost on me at the time. I wasn’t aware how rare my condition was or how unusual it was to run into another person with EEC. I just thought it was neat that this woman looked like me! My mother, however, was overcome with emotion. She had never met anyone else with EEC and here, just by chance, was Suzanne.

Long after my swimming lessons were over, my mom kept in touch with Suzanne. She must have asked her so many questions and Suzanne patiently answered them. As I grew up, Suzanne was always referenced whenever I had surgery or a health situation to deal with. “Suzanne went through this”, my mom would say.  “Suzanne said…” my mom would start off, when I wondered about how something was going to go. Over the years we lost touch with Suzanne, and her presence fell to the back of my mind.

It wasn’t until I got involved with the NFED that I started thinking of her again. During the planning stages of the 2012 family conference, I was given a list of people who were registered for that year. Scanning the list, I saw Suzanne’s name and address. I wondered if it was really her. I couldn’t even remember what she looked like.

Sure enough, she and her kids were at the conference. The first day in the EEC syndrome specific group, we sat in a circle and introduced ourselves. I knew who she was even before she said her name. After the session ended, I caught up with her in the hall. “Suzanne! Do you remember me?” I asked.

Suzanne and I reunited at the NFED Conference in Orlando in 2012.
Suzanne and I reunited at the NFED Conference in Orlando in 2012.

 

Of course she remembered me. As I’ve come to find out, meeting others with EEC is not something anyone easily forgets. I’ve also realized just how lucky I was to have met Suzanne when I was little. Before the internet, there was no easy way to find others with EEC. Meeting her and knowing that she had been down the path ahead of me was a great source of strength and encouragement for me. I’ve met adults who didn’t know there were others with their condition until they were in their 40’s and 50’s!  It must be a lonely feeling to spend most of your life thinking you’re the only one. 

I also got to meet Suzanne’s son at the conference. Isn’t he cute?

This handsome guy is Suzanne's son Tyler, who is also affected by EEC.
Suzanne’s son Tyler, who is also affected by EEC.

I’m not really sure how to conclude this post except to say that I thank my lucky stars that I had Suzanne to look up to while I was growing up. I hope I can be the same for other little girls and boys out there with EEC. While sometimes my “EEC issues” can get old, I wouldn’t trade it for the world.  I’ve met so many amazing people because of it. I am continually inspired and encouraged by the strength and positive attitudes of my EEC friends and the people that love them.