Last week I received an email from a TV production company in the UK. They wanted to know if I’d be interested in talking to them about a documentary they were working on. They thought I would be a good candidate, based on some of my blog content.
Now, I’m a pretty skeptical person, so before I envisioned myself starring in a tell-all documentary about my life with EEC, I knew I needed to do some research. I wrote back and said I might be interested, but obviously wanted more information. I Googled the production company to see what kind of shows they’ve done.
It turned out that the show in question was called “Too Ugly for Love?”
I wasn’t terribly surprised at this revelation, though I will admit to being a little hurt. Too ugly for love? Is that a thing?
After doing some research it appears that the show’s focus is on people who have some sort of disability or disfigurement and are having trouble finding a romantic partner. From the clips I have seen online, and the articles, it is not as horrible as it’s title. However, it’s not exactly an empowering take on dating with disabilities, either. It seems to insinuate that if you have anything different about yourself – if you are somehow “ugly”- that no one would want to date you.
Aside from some awkward years between the ages of 11 and 16, I did not find this to be the case for myself. I believe that personality far outweighs physical beauty. I’m sure there are guys out there who would not want to date me because of my scars or my missing digits, but those aren’t people I’d want to spend my time with anyway. There are plenty of people who are capable of looking past whatever external flaws you have and seeing your true beauty and value. Regardless of what your face or body looks like, if you have an ugly personality, you’re not going to have much luck in love.
I wasn’t the only one who was contacted about this show. Jen Campbell was too, and she was pretty pissed. You can see her YouTube response here. She brings up a lot of valid points about representation. She’s really passionate about this.
What do you think? Is it just another silly reality show with a bad name? Would you go on it if asked?
I’m not one to wish the days away, but going back to a full work week after two nice, long holiday weekends is rough.
Last night I gave my 6th Toastmaster speech. I might be starting to get the hang of it. I spent a ton of time preparing a PowerPoint presentation to accompany my speech, which was on the art of Zentangle. One of the slides was a mini slideshow of some of my favorite pieces. Other slides showed the various steps of creating a Zentangle. It was gold.
I arrived early and took pains to rearrange the room so we’d be facing a blank wall where I could project. We got the projector out of the closet and set everything up. The projector had one of those old connectors with the weird trapezoid shaped plug with all the little prongs in it. My computer doesn’t have a port for that kind of plug.
My heart fluttered for a moment. But wait! There was a USB cord in the case with the projector!
The projector was on, shining it’s bright blue glow on the wall. My computer was on, with the PowerPoint open and ready to perform.
The cord did not seem to comprehend that I wanted it to transmit the presentation to the projector. Various meeting attendees offered suggestions. Try Windows P! Function 8! Hail Mary!
There would be no presentation to go with my speech.
If I wasn’t still chilled from the 9 degrees outside and if I had functional sweat glands, I would have been sweating like a sinner in church.
Instead, I contemplated my choices. One, I could gather my things and leave at my earliest convenience. Or two, I could work with what I had.
Fortunately, I had considered the possibility of technical difficulties while I was preparing my speech, so I brought the book I had planned to mention, plus my Zentangle travel kit and a bunch of tiles.
Because I’d been rehearsing my speech so much, and also because Zentangle is near and dear to my heart, talking about it was easy. I was still pretty nervous with having to think on the fly and I really had no idea how I was doing on time, since I’d timed my speech to go along with the slides. But it all worked out okay. I used the book as a prop and I used the items from my kit as props, and of course, the main attraction, the Zentangle tiles.
During the break, I spread the stuff out on a table and a handful of people came up and looked at them and talked to me about it. So that was cool, and by then I was so glad to have gotten the speech over with that I didn’t care about the technical issues. Ok, I cared a little. I spent a LOT of time putting that presentation together and no one got to see it.
All in all, I’m happy I completed the 6th speech and I realize the fact that I got thrown a curve ball only served to educate me further in the importance of being prepared for anything. Only four more speeches to go and I will get my Competent Communicator Certification! Woo hoo!
I’ll close with my brilliant closing line from my speech last night:
I hope this brief overview has inspired you to try your hand at the art of Zentangle!
What’s that saying? The first step to recovery is admitting you have a problem?
Telling people you have a Facebook addiction doesn’t quite get the same reaction as saying you’re battling an alcohol or drug addiction. It’s not like anyone’s ever died from Facebooking too much.
I am willing to bet that relationships have been ruined, jobs lost, and negative health consequences have been incurred all thanks overdosing on Facebook. I’m not gonna lie, there have been occasions when I’ve chosen to stay inside looking at Facebook instead of putting on my sneakers and heading out for a quick jaunt around my neighborhood.
How did I get so hooked on Facebook? Let’s take a walk down memory lane.
The Early Years
I got my first taste of the strange and exhilarating world of the Internet sometime back in 1997. We lived in rural Vermont and had to use dial-up to connect. I can still recall the rhythmic tones and static that meant our computer was reaching out and grabbing on to the World Wide Web.
Back then the Internet and my comprehension of it was horribly lame. I thought that you got charged for visiting Internet sites that were far away, like a long distance phone call. At first we really only used the Internet for sending emails to each other. We would connect just long enough to download new emails and then disconnect while we read and composed responses. We did this because using dial up actually did rack up charges on the phone bill.
Even then, when all I was doing was emailing, the addiction had started. I would suffer the 10-minute procedure of getting online to check for mail several times a day. It would have made sense to just check every evening at say, 8 pm and then wait the 24 hours for a reply. But no. I couldn’t wait.
Just so you understand how bad my thirst for fresh email was, check out this story. For about a week, we were without a monitor. I got this crazy idea that I could log into Outlook, connect to the internet and then PRINT any new email that came in. I’m not making this up. I turned on the computer and sat at the desk. I stared into the space where the monitor had been and I visualized where the Outlook icon was located on the desktop. Believe it or not, I was able to open up Outlook and connect to the internet. I heard the familiar ding indicating new mail coming in. If I had paid attention in computer class I might have remembered the correct keyboard shortcuts to open new messages, but this is where my plan failed. I couldn’t figure out how to open the email and print it. Instead I had to wait in horrendous agony until we got a new monitor.
Talking to Friends and Random Guys on the Internet
In my senior year of high school, a friend told me about a chat program called ICQ. It was amazing. Logging on and seeing a friend’s name with the bright green flower next to it, meaning that they were online and available, was such a rush. You know what else was a rush? Being available for random chats. My mom reads this blog so I will keep it clean, but let’s just say I had some interesting conversations with people all over the world thanks to that feature.
I soon learned about AIM, and set up an account (lilywhite8) on there as well. Most evenings I would set up camp at the computer (which was in my moms bedroom!) and talk to my friends into the wee hours of the morning. (I think I could be online for a long time after 9 pm because the phone rates were cheaper?) My mom somehow managed to sleep despite the glowing screen and my endless tapping on the keyboard. Crazy, right?
The Middle Years
AIM was a part of my life for many years to come. Being on the computer without AIM on and connected made me feel like I was missing an arm. Even if I wasn’t talking to anyone it just made me feel a little less lonely picturing my friends hunched over their computers in their homes at the same time. Plus we all got creative with away messages. I was that girl who posted tragic song lyrics in the hopes that someone would think I was really deep and emotional.
At my first office job I installed AIM on my work computer and kept company with online friends throughout the tedious work day. Of course this was before any of us had smart phones or even cell phones with a texting feature, so having AIM was how you kept up with your plans for the evening or shot quick notes to friends.
A friend then told me about something called LiveJournal, and I started my first blog! Of course I didn’t call it a blog, I called it LJ. It’s actually still out there for all to see, and if you ask me nicely I might tell you what my username was so you can look it up. It was not lilywhite8, but good guess.
I also tried a blogging site called Xanga, but that didn’t last very long. Then came Friendster, which was nothing but a flash in the pan. Around the same time was when MySpace appeared so of course I had to try that too. It’s funny, in hindsight, every time I tried out a new social media site, I’d end up adding all the same people as friends. It’s like it was more about the program than actually keeping in touch and building meaningful relationships.
The Facebook Era
After a 5 year hiatus from college, I returned to academic life at the age of 25. I opened my Facebook account that first semester, which was the fall of 2005. It was pretty boring at first because it was only open to college students and since I had just started college again, I only knew about 5 people. But soon I started accumulating friends through my classes and then people I knew at other schools would connect. It must have only been a year or two later that Facebook opened up to everyone because that was when it got out of control for me.
Suddenly everyone had Facebook. I connected with nearly everybody I’d ever known in my entire damn life. Focusing on my coursework became super challenging, what with juggling AIM conversations, scrolling through Facebook posts and bedazzling my MySpace page.
I knew it wasn’t healthy or positive to be this distracted, but at the same time I wanted to be able to keep up with everyone and be available at all times in case anyone was looking for me or had the urge to tell me something.
I told myself that after I graduated and got a real job, I would stop using Facebook so much. Graduation came and went and I struggled to find work in the tough economy. Being on Facebook was a way of avoiding a difficult reality. Should I have bucked up, quit Facebook and stepped up my job searching efforts? Yes. That probably would have helped. But I argued to myself that Facebook was a networking tool that I needed to get ahead in life.
The first job I managed to land after graduation was not at all what I wanted. I drowned my sorrows in Facebook, which I was on for much of the workday. (I was a receptionist – there wasn’t much work to be done.)
It was that winter that my Facebook addiction really reached it’s raging peak. I had well over 500 friends. I played FarmTown. I posted status updates every couple of hours and responded to everyone who commented (and I felt like a loser if no one commented). I had political and religious arguments. I got angry and cried over conversations had on there. It was craziness. To this day I don’t know how my relationship with Dave survived. Probably because he didn’t even know how bad it was. It was my little secret.
The Winds of Change
A moment that really struck me and made me realize what an idiot I was being was on a gorgeous spring day in Vermont. I had gone up to visit my family for the weekend. John and Nick were still in high school at the time. We’d all gotten into this silly Facebook game called FarmTown. Mom and I, and I think Nick (John was probably still in bed), were sitting around the table eating breakfast and taking turns passing around a laptop so we could harvest each other’s crops in FarmTown. At some point I looked out the window and noticed that Dad was outside working in the real garden. Suddenly it struck me how dumb it all was. I should have been outside then, with my sleeves rolled up, enjoying the warm spring sunshine and a day where I didn’t have to be stuck in an office.
Soon after that, I deleted the FarmTown game, and I cleared out my friend list of all the people I’d added after meeting only once, or who I’d accepted a friend request from just so I could add another friend to my list.
By the end of that year, I’d moved on to another job – one without a computer! That helped to cut back on Facebook time immensely, but to be honest I still spent a lot of time contemplating witty status updates that I could then post as soon as I got home (this was before I had a smartphone).
Over the last several years my obsession with Facebook has waxed and waned. Sometimes I am so sick of it that I deactivate it and try to pretend it doesn’t exist. Other times I revel in it, posting brilliant status updates, sharing gorgeous photography from my Instagram account and participating in lively conversations in the groups I’m part of. (I’m teasing… my posts aren’t always brilliant… I probably drive people nuts with the righteous vegan content I prefer to share lately).
No One Cares
Pardon me while I go Eeyore on you for a moment. Something that has been bothering me about Facebook for a while now is the realization that none of it matters. How many of my Facebook friends are true friends offline? How many of them would notice if I just disappeared from Facebook? It goes the other way too. On more than one occasion I have been speaking with someone in real life and discovered that they had deactivated their Facebook account and I hadn’t even noticed their absence. There have been times that I’ve seen someone’s name on Facebook and noticed that we weren’t actually friends, but I honestly couldn’t recall if I had un-friend-ed them or if they had un-friend-ed me.
On Facebook, if you’re not continually active, no one notices your absence. Unless of course you have stalkers.
Ma Ma Ma Ma Madness
So why am I obsessing over my Facebook obsession now? Well, I’m finding the problem is once again creeping up and taking over my life. I reach for the phone every time I have a moment to spare (and even when I don’t!). It’s especially troublesome at work, when I am faced with starting a task I don’t particularly enjoy. I’ll just scroll through Facebook for two minutes before I start the next project. Hit a roadblock? Let’s check Facebook. Feeling distracted? Check Facebook. Feeling like I need a little attention? Post a witty observation and check Facebook 14 times throughout the remainder of the day to see if anyone liked or commented.
The worst of it is that most of the time I check Facebook there’s nothing significant to discover. Sure, I have friends who are probably more addicted than I am, who post articles and memes and funny jokes all the live-long day, but I get tired of seeing that.
I crave real interaction. I want to talk to people about real things. Feelings. Observations. Thoughts on life. I want to get an email that starts out with a genuine greeting and contains meaningful content. I want to know if anyone’s actually read this far down on this crazy long blog post, and if you think I’m absolutely nuts for sharing this somewhat embarrassing confession about my searching the interwebs for meaning all these years.
Of course there are positive aspects of Facebook. I can keep in touch with my family, who are spread out all over the place, as well as my NFED friends, who are also spread out all over the place. But ultimately, if you’re really important to me, and I’m really important to you, we’re going to have the capability to communicate without Facebook.
Stopping the Madness
A week ago I deleted the Facebook app from my phone. I installed a habit tracker app and gave myself permission to check Facebook three times a day.
One week later, and I deactivated my account. I had managed to limit my Facebook checking to less than three times a day. That is until one day that I caught something in my news feed that set me off on an “I’m deleting everyone who has ever upset me!” rampage which lasted a solid hour and left me with about 50 less connections. Immediately I began worrying if they would notice and be hurt or upset.
What a flipping waste of time! Clearly I cannot handle even limited access to my account. That’s why I consider it so similar to an alcohol addiction. You don’t say to an addict that they can limit themselves to three drinks a day. They can’t. I can’t. It’s all or nothing.
That being said… before I deactivated my 10-year old account, I created a new one so that I could keep up my EEC Chick Facebook page. But that’s different. I couldn’t spend hours on there if I tried, because it doesn’t let me look at any of my follower’s profiles. Which is good, or I would have been stalking every one of you instead of focusing on writing this post.
I thought long and hard about sharing this weakness. It really does make me feel like a loser to admit just how much time and energy I have wasted on Facebook and on other social media throughout the course of my life.
I don’t mean to make light of anyone who struggles with drug or alcohol addiction. In no way do I consider my inability to select the “Shut Down” option on my computer to be on par with the struggle to quit drugs or alcohol. I do, however, think that the root of the problem probably comes from a similar place. And to be honest, I never let myself experiment with drugs because I think I probably would have become an addict if I had.
What a long, strange trip it’s been. Ok, not really. I have yet to exceed 100 posts. That’s rather sad. I had envisioned this blog becoming the next Dooce, except with less poop references. It’s probably a good thing I haven’t gone viral though – I don’t know if I could handle it.
If I can say this without sounding too full of myself, I think my blog is pretty great, even if it hasn’t won any Bloggies (yet). The fact that it led at least one family to the NFED and to the wealth of knowledge and support they found there means that my efforts have been worth it.
As I review a handful of my posts I am realizing that I spend a lot of time saying that I want to write more / I will write more at some future date / I would write more if I could only find the time, etc. Well, that’s got to stop! If I bore myself reading it then I’m sure its boring you!
So let’s get on with life. It’s been two weeks since I last wrote, and I will tell you why. First, Dave and I have taken on a ridiculous number of home-improvement projects that we wish to complete before winter comes.
It started off when I simply wanted to paint the kitchen. One thing led to another and suddenly the kitchen was gutted, we were laying down a new floor and painting everything. Now that it is almost done, I’m really glad we did it, but it was a bit difficult for a few weeks there while the refrigerator was in the living room and all our kitchen items were scattered like chaff in the wind. We ate a lot of takeout.
Last weekend, as I was finishing painting the kitchen, Dave had already moved on to the next project, which was painting our wooden deck and ramp that leads to our front door. It’s not technically a wheelchair ramp – the guy who lived here before us was a cyclist and I guess he kept his bike in the house and then rode it gleefully down the ramp, rather than carrying it down the stairs when he left. Anyway, I’m digressing. So Dave began power-washing that last weekend, and then this weekend we painted it. We started on Thursday evening and finished today. Technically the balusters still need another coat, but they will have to wait.
Last night was the Super Harvest Blood Moon Eclipse (did I get that right?), which was beautiful. Once the moon was totally red/orange, my eyeballs couldn’t seem to comprehend that it was the moon. It just looked like an orange ball in the sky for a while there. Also, when it was not being eclipsed, it was so bright I could barely look at it. Woo!
Last week – no wait – the week before, I gave my 5th Toastmaster speech. I wrote it two days before giving it, so my delivery was not as smooth as it should have been. I ended up looking at my notes way more than I should have. I’m signed up to give another speech next Monday. Have I written it yet? Nope.
Last week (for real this time), I had to present a work project to the Steering Committee. It was my first time presenting to the President and the CFO, plus a handful of other important people. I don’t normally sweat very much, thanks to EEC. Even if it’s hot as Hades outside, my armpits will be as arid as a desert. However, there are apparently different sweat glands associated with the cold sweat that breaks out when one is stressed. Because I was sweating bullets before I went up to the board room. But once I got up in front of the group, clicker in hand, PowerPoint slides gliding across the screen, I was fine. One of my colleagues told me she was really impressed with my delivery. Yay.
Up next on our home improvement project list is to finish painting the cabinet doors and put them back in the kitchen, and then move on to painting the living room. I’m crossing my fingers that the living room will be fast. If it is fast then I might re-paint the bathroom too, but that might be pushing it.
Up next in my work life is preparing for a trade show I’m going to in Vegas at the end of October. I’m pretty excited that I will get to go out west again this year, and I’ve never been to Vegas before. I’m hoping I will have some free time so I can go out and explore a bit. I should have time to see a show at least one of the nights I’m there. I’ll be sure to blog about it like I did with the Colorado trip.
Well it is past my bedtime here, and the end of a glorious 3-day weekend for me, so I should wrap this up.
Today I’m going to talk about breasts. Boobies, melons, sweater-stretchers. Snuggle-pups or sweater kittens. Whatever you call them, there’s no denying that people spend a lot of time thinking about these glorious glands.
In my growing-up years, my friends and I gleefully anticipated growing ample bosoms in our teen years. We practiced by stuffing all manner of padding into our bathing suit tops and strutting around in front of each other. Balled-up socks, balloons, crumpled up paper. We could only imagine the weight and density of the luscious lumps we would surely develop.
When I was about 10 years old, the magic started to happen. Or, as my mom said cheerfully one night as I was getting ready for bed, “The pumpkin seeds are sprouting!” I blushed and acted like I was embarrassed, but inside I was delighted. My Marylin Monroes would be taking the stage before I knew it!
In those early days of breast development, I oscillated between feeling proud of my growing girls and feeling unhappy with their lack of size. At first I wore sports bras under large t-shirts (mostly because it was 1990 and that’s what all the girls my age did), but this did nothing to enhance my feminine look. I also worried that the sports bras were actually hindering my development because they were so tight.
In some cruel twist of fate, neither I nor my two best friends got to feel the weight of womanhood on our chests in the way that we had imagined. My two friends were naturally very petite (so much so that I often felt obese in comparison – which, if you’ve seen me in real life you might think is hilarious). In my case, I can probably thank ectodermal dysplasias in some part for my lack of humongous hooters.
Ectodermal dysplasias can affect breast development in some girls and women because it affects glands, and as we all learned early on, breasts contain mammary glands. I consider myself fortunate because I do have natural breasts, albeit little ones. Some forms of ectodermal dysplasias prevent ANY breast development and often the affected women will get breast implants in order to attain a more feminine look.
Throughout my teenage years I always kept some shred of hope that I would hit a growth spurt that would only affect my chest area. I looked at ads for supplements in magazines (though I never actually bought any). I tried exercises, (I must, I must, I must increase my bust!) and the power of positive thinking. I eventually learned that sports bras were not the answer, and switched to bras that actually defined and enhanced my shape.
I never seriously considered breast implants for myself. I won’t say I didn’t think about it, but it was not something I really wanted. The idea of having more surgery was unappealing to me, plus I was always finding other ways to spend my money.
It took me a while, but once I got into my mid-20’s or so, I was pretty happy with my queen jewels, and the rest of my body for that matter. I found out that not all guys want women with enormous eggplants. Plus, as my friend’s mom used to tell us “You’ve got more than he does!” (Though in some situations this is actually not true.)
All joking aside, having small breasts is really pretty great. You can exercise without needing to restrain them. You don’t get under-boob sweat. You never have back pain due to heavy breasts, or get dents in your shoulders from your bra straps. You can sleep on your stomach. You can walk around without people staring at your chest.
According to internet sources, small breasts make you look younger (maybe that’s why everyone thinks I’m 25…) and they are more sensitive than larger breasts. Also, you don’t have to worry about them sagging over time the way larger breasts do.
So let’s hear it for our magnificent mammaries, whether they be small or large, perky or droopy, plump or flat. Love what you have, and if you don’t, there’s always surgery!
PS. None of the imagery here is representative of my actual breasts, just in case you were wondering.
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 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’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.
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.
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.
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.
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.
Throughout my late teens and most of my 20’s, I lived in ignorant bliss when it came to my ears. My “bad” ear was stable enough that it didn’t bother me. Once in a while I would have nagging thoughts about the cholesteatoma coming back, so I would make an appointment with my ENT to reassure myself. He was affiliated with Yale, so I figured he would know what he was doing. He said my ears had obviously been through a lot but that things looked fine. All the time I wondered if I could really trust him and if maybe he was just too nice.
Something about reaching 30 made me start thinking more seriously about my health issues. I decided to find another ENT and get a second opinion on the state of my ears. I did a Google search for “best ENT in CT” and found someone else nearby.
On my first visit, I am brought into the “Micro Room”, which is a stark white room with a reclining exam chair in the center. The windows along the back wall are covered with vertical blinds behind which there’s nothing to look out at except a flat gravel roof and brick walls of the buildings next door. The only pictures on the walls are schematic diagrams of the inner ear and a poster promoting the cessation of tobacco use. Behind the chair, out of view of the patient, is a cabinet with innumerable drawers housing a plethora of medical equipment. There is a swiveling metal arm similar to the kind you see in a dentist office, except this one has something like binoculars on it instead of a lamp. That is the microscope that they will use to see what’s going on inside my head.
I sit in the chair and face the tobacco poster. It’s a slightly abstract drawing of a man’s face with arrows indicating all the areas that tumors can develop if you don’t quit chewing tobacco or smoking cigarettes. I look at the linoleum tile floor and around at the ear diagrams. I wonder how many ear diagrams I’ve seen in my life, and yet, if you sat me down with an unlabeled one and asked me to name all the parts, I’d have to stop after about three words. As I sit there idly, I can feel my anxiety creeping up. I try to soothe myself with thoughts of what I’ll do later that afternoon.
After a while, the doctor comes in. He is younger than previous ENTs I have visited but I realize that the older I get, the more youthful doctors seem by comparison. We talk about my situation for a few moments before he lays me back and takes a look in my ears with the scope. He explains that the right ear has tympanosclerosis, or calcification of the ear drum. The ear drum is also heavily scarred from childhood ear infections and tubes.
Now for the bad ear. He is surprised at the condition of my left ear and asks me how often I have had the mastoid cavity cleaned out, and when was the last time I had it done. I can’t remember. “About a year ago?” I underestimate. My pulse quickens as he comments on the horrendous state of the cavity and I anticipate that a cleaning session is about to commence.
When I was 9, after my radical mastoidectomy, I added a new medical procedure to my repertoire. The not-entirely-pleasant mastoid cavity clean-out. Or simply put, getting my ear suctioned. I’ll spare you the graphic details of a radical mastoidectomy but visualize, if you will, taking a melon-baller and scooping out the inner ear a couple of times. Removing all or most of the functional parts of the ear and even some of the skull bone in the area. You’re left with a cavity, or a bowl. An empty space. Since the normal function of that area has been destroyed, the ear can no longer clean itself out naturally. So stuff builds up in there. Not copious amounts of stuff, but stuff. Dead skin cells, ear wax, who knows what else.
As a kid, my ENT at CHOP (Children’s Hospital of Philadelphia) would bring me into a darkened room and have me lie on an exam table. His microscope was connected to a camera which displayed the images on a t.v. screen on the wall at the foot of the bed. I always squeezed my eyes closed because I was terrified of seeing my own insides (or anyone else’s, for that matter). As I lay there, he would insert the suction in my ear and I would feel a light tugging. The device would make slurping sounds, like when you’ve reached the bottom of your milkshake but continue to suck at the drops on the bottom of the glass. Sometimes the left side of my tongue tickled as he poked and prodded inside my head. My mom would watch the t.v. screen with interest as the doctor commented on the process. It usually lasted a minute or two and then it was over. If I felt dizzy, I would lie there a little longer until I could function.
My new doctor is surprised that the Yale doctor hadn’t told me I should come in more often for cleanings. My heart sinks a little. I’m frustrated that I haven’t been given better information about my ear (or perhaps I chose not to comprehend what I’d been told). I make a mental note to put forth more effort to ask questions, research and be an advocate for myself.
At first the suction feels good, like scratching at an itch I can’t otherwise reach. It has literally been years since my ear has been suctioned. As he manipulates the tool down further into my ear, it becomes a little uncomfortable. I try to focus on something else, to breathe steadily and relax. But my body is tense: my shoulders stiffened and my hands gripping the arm rests as if I’m expecting to be thrown from the chair at any minute. Breathe… Focus on your breathing, I think to myself deep breaths…
Now the sensations have move beyond uncomfortable. There is painful tugging, as if he is pulling on a scab. “Ow!” I quietly exclaim. Always a courteous and obedient patient, I try not to make a fuss. The tugging, scraping and tickling sensations continue as doctor mutters about how much debris is in there. After several minutes of this, my attempts to remain calm have been forgotten and my focus now is to keep from breaking down in tears.
I’ll admit now that I was feeling very sorry for myself in that moment. It wasn’t fair that a young, healthy person like me would have to be subjected to this medical torture. Not to mention, I didn’t have good health insurance and here he was talking about how I needed to come in for ear cleanings every 3 months. How could I pay for all that? My friends were out spending money on fun things like vacations and houses and… student loans.
Finally, another great tug and the feeling of a chunk of something being ripped out of my ear is more than I can handle. The waterworks turn on. I sniffle quietly as the tears roll back towards my ears. The assistant puts a comforting hand on my arm. “It’s okay honey, just let it out.” Little does she know what she’s suggesting. “Letting it out” would result in a sob-fest that would be hard to stop, so I choke it down and wipe my eyes with the tissues she hands me.
Mercifully, the doctor determines that he has done enough damage for the day. He prescribes ear drops to put in every night and instructs me to return in several weeks time for further cleaning. He tries to cheer me up by saying that we made progress and that if we stay on top of things from now on, it won’t be so bad.
I cry in my car as I drive home from the appointment. I feel defeated. Knocked down. Scared. That night as I put the drops in, I cry some more. I realize that I’d been fooling myself to think that I’d ever be free of the issues that come with EEC. I realize that I am the only one who can choose to improve the situation. I resolve to get serious about my ears and figure out a way to pay for the medical bills that loom ahead of me.
As I write this, over 3 years later, I realize how important that crappy day in the office was. I didn’t know it at the time but it was a turning point for me. Since then, I was able to find a better paying job (one with amazing health insurance!) and I have been dedicated to getting my health issues reigned in. I’ve accepted that EEC is going to be with me for life but I have decided to take as much action as I can and try to stay on top of it. As I prepare for tomorrow’s surgery, I am keeping a positive outlook and remembering to keep it all in perspective.
Every once in a while I think of that Goo Goo Dolls song, ‘Name’, which has the line “Scars are souvenirs you never lose The past is never far.” It brings to mind superficial scars, like the crescent shaped scar on my forearm, where our dog Tasha bit me when I tried to take a chicken bone from her. It usually takes a moment or two of deeper thinking before I remember how many scars I have.
This blog has existed for many years in my mind’s eye. I have been putting it off for one reason or another, but the biggest reason is that I am hesitant to open myself up to criticism and judgement when it comes to something so personal. So bear with me as I slowly peel back my layers and release these thoughts and feelings I’ve been holding onto for years.
Growing up “different” isn’t easy for anyone, of course. It’s a basic human need to feel accepted and part of a group. When you start out your social life being an outsider, you quickly learn how to change yourself and to hide the qualities that make you different. For me, since my appearance was so unique among my peers, one of the ways I adapted at school was to keep as quiet and unobtrusive as possible.
It’s hard to be a wallflower when your very appearance makes you stand out in a crowd, but in every other aspect, I tried to fade into the background as much as humanly possible. This worked as far as keeping bullies and meanies at bay – after all, what kind of jerk goes out of their way to pick on the girl who always has her nose in a book and never makes eye contact with anyone? (Ok, some jerks DID bully me, but quickly tired of it since they got no reaction from me.)
The downside of always keeping my nose in a book and my head in the clouds was that I didn’t enjoy school much, or make many friends (I must give a shout-out to the kind souls like Emilee, Chrissie, Jessica, and Marie, to name a few, who reached out and included me.) I was also fortunate to have several friends outside of school, especially my two best friends Chrissy and Joanna, without whom I can not imagine my childhood days.
Now, 20+ years after my school days, I have grown more confident, more outspoken and less concerned with “fitting in” and being “normal.” After all, they say normal is boring. Despite this, I still have days of wishing I could just hide under the covers and not have to go out in the big scary world. I am still somewhat socially awkward, though I now embrace this about myself. It’s me, socially awkward girl! I’ve overcome a lot of obstacles, but there continue to be challenges ahead. I see a bright future for myself and know that I can continue to work through my “issues” and hopefully help others work through theirs.