Well, so much for writing more frequently! I’m still on my Facebook fast, but clearly that has not magically resulted in me writing more. One thing at a time though, right?
Right now I’d like to share with you what a couple of my EEC buddies are up to.
My friend Terri has started blogging about her experiences with EEC. Check out her blog, bamagirl eec and give her some support!
Another friend, Jack Kriz, who lives out in Oregon, is commencing a 370 mile bike ride along the entire Oregon coast. He’ll be joined by his two brothers and using the ride to raise money for the NFED. Check out his page here and please donate if you can.
Lastly, I just want to give a shout-out to all my young EEC buddies who will soon be returning to school. Even though I’m well past my school days, I still get a twinge of nervousness and excitement when I see the back-to-school signs in the stores.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.