Category Archives: NFED

Shameless Self Promotion


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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. ūüôā Perhaps one day we can have an EEC Chick party and gather up every one we know!

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.

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.