Yesterday was a gorgeous spring day and literally the first day of 2015 that we could leave the house in short-sleeved shirts. Of course we spent most of the day outside, cleaning up all of the sticks that fell through the winter and raking up all of the leaves that had been plastered to the ground beneath all the snow.
One of our spring cleaning projects was to clean up our sunroom (or Florida room, as my Dad calls it). Throughout the winter, this room acts as our catch-all for anything that we don’t have room for in the house. After the long, dark months of winter, it can get pretty scary out there.
So yesterday, Dave spent several hours cleaning the room and getting it ready for warm weather. His ultimate goal is not that he and I should have a nice place to relax and put our feet up, but that the cats will have somewhere new to sun themselves.
In the late afternoon, after we had completed our yard work and various projects, I went into the kitchen to begin making dinner. Dave left the sunroom door open so the cats could explore this room that they hadn’t seen since last fall.
As I laid the cutting board on the counter and prepared to cut vegetables, I saw Sophie (the black cat) walk into the kitchen in my peripheral vision. Absentmindedly, I greeted her. I turned to look at her and saw that she was holding something in her mouth. Something brown and plump, with shining, beady black eyes. My first thought was “Wow, that’s a realistic looking mouse toy! I wonder where she found that?”
Then, unconsciously, I began to scream. The screams rose up out of my chest like they had a life of their own. I couldn’t stop myself. Sophie dropped the mouse on the floor and began batting it around like a toy. I screamed louder and pranced around like I was barefoot on hot coals.
Dave, meanwhile, was in the shower and could only hear a hint of my screaming. I imagined that he would come running out in a towel, dripping wet, to rescue me, but he did not. (Good thing I wasn’t actually being attacked!)
Finally, I came to my senses and grabbed Sophie from behind. She struggled and fought, but I was able to get her away from the mouse. I threw her into the living room and returned to see the mouse escaping beneath a cabinet.
I have always thought (quite proudly) that I was not one of those women who would scream and make an exaggerated fuss when exposed to a flying insect or spider. I’ve taken entomology classes. I know insects can be beneficial and harmless. In fact, we have a spider that lives in our bathroom, and I let her reside there because I’m cool like that.
But somehow, a cute little mouse in my house will cause me to lose my mind.
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.
For about a week now, I’ve been 85% deaf (as opposed to my usual 50%). I seem to have acquired an infection or a swelling or some thing which has caused my good ear to feel clogged and useless. I’ve been walking around feeling like I’ve just jumped into a swimming pool and the world is muffled.
My nerves are a little frazzled lately, in part due to this ear thing. If you’ve ever gotten water in your ears, or had your ears pop in an airplane or something, you know how annoying it is when they don’t feel (and hear) right. You never think about how often people speak in hushed tones at work (or should I say gossip?) until you can’t hear them. Sitting at my desk and watching a co-worker mouthing the latest gripes and having no idea what she’s saying makes for some awkward moments. Worse yet is not being able to clearly hear my boss giving direction for a project.
Ok, who am I kidding, this happens even when my good ear IS working.
So you’re probably wondering what the problem is. Well, ear problems go hand in hand with cleft lip and palate, thanks to improper Eustachian tube function. Since infancy I had frequent ear infections. Every time I’d have surgery on my mouth, they would pop some tubes in my ears in an attempt to alleviate the ear issues. The tubes would always work their way out a short time later and the infections would return. Over time, my ear drums became heavily scarred from all the tubes and all the infections and subsequent ear drum ruptures.
When I was 9 years old, I had surgery on my left ear. I had been suffering from a chronic ear infection for years before that. I’m sure there was pain and hearing difficulty during those years but all I remember was the frequent dosing of antibiotics, or “bubble-gum medicine” as we called it, because it was bright pink and candy-flavored. So I was 9 years old and I had this surgery which was supposed to be an outpatient procedure. I think it was an exploratory surgery because the doctor we were going to couldn’t figure out what my problem was. So when they went in, they discovered that my inner ear was full of cholesteatoma, which as I was made to understand at the time, is basically a tumor made of skin. They opened up my ear from behind and removed all the cholesteatoma, along with bone and parts of my inner ear.
I woke up from the surgery with an incredibly sore neck. My head was wrapped in what felt like an enormous, heavy bandage. My parents were really upset and they told me then that the hearing in my left ear was gone. I don’t recall being sad about it. Considering the amount of cholesteatoma and the extent of the infection I had at the time, I probably hadn’t been able to hear well from that ear anyway.
A few days later we returned to the doctor so he could remove the bandage and take a look at my ear. I sat on my mom’s lap as he began unwrapping. As he pulled away the last bit of gauze, a gush of smelly fluid came out from behind my ear. Mom exclaimed concerns about fainting and the doctor exclaimed too – something along the lines of “Oh crap, that’s not good.” The incision had become infected. Back on antibiotics I went, and home I went with a hole in my head. It had to remain open until the infection cleared up.
Part of the infection-healing process was that my dad had to apply antibiotic ointment to the incision every day. My mom couldn’t bring herself to do it (and I don’t blame her). It was a hideous experience. When he would get home from work in the late afternoons, I would lie face down on the bed while he took a Q-tip and gently applied the antibiotics to the back of my ear. I hated every second of it and just thinking about it now makes me queasy.
Ultimately that infection healed and the wound was closed up. I missed the first week of 4th grade and, as you can see in the photo above, once I did return to school I still had the cotton ball and ointment going on for a while. Plus I was exhausted.
Sadly, that was not the end of the ear problems. The following summer I had to spend a week in the hospital for an intravenous antibiotic treatment to clear up further ear infection. By then we’d switched to another ear doctor because my parents were horrified that the previous one had missed the signs of cholesteatoma until it was nearly too late. For several years I had regular visits to the ENT to have my ear “suctioned”, which as you can imagine is not the most fun process. After a while, it was determined that my ear was okay and I could stop using ear drops and eventually I stopped visiting the ENT.
For the most part my ears were okay throughout my teens and 20’s. The occasional ear infection or wax buildup in my “good” ear would sent me to a doctor for treatment. It wasn’t until my 30’s that I finally decided to find a good ear doctor and find out what was going on in both ears.
Stay tuned for Part 2 – my adventures in ENT issues as an adult.
Halloween has never been a favorite day of mine. As a little kid I was unsettled by the fake tombstones and cobwebbed skeletons that adorned my normally pleasant-looking neighborhood. Even now, I don’t understand people’s fascination with death and gore, like the current zombie craze that affects some of my coworkers. I have lived through experiences where I felt like a zombie. Remembering my own face colored in various shades of bruise, blood leaking from my nostrils, or the corners of my mouth after surgery, and remembering just how awful it felt, both mentally and physically… I just don’t understand the appeal of pretending to be undead.
Masks are also unsettling. The frozen expression, even if it is a jolly one, hides the real emotions and intentions of the person wearing it. Even characters at theme parks have given me an uneasy feeling and I never rushed to be photographed with them. Who knew what kind of creep was lurking under that cheesy grin and oversized head?
Surgeons wear masks. The second surgery I ever had in my life was on October 30th, 1980. I was only 4 months old at the time so it is unlikely that I consciously remember any of it, but I wonder sometimes if my aversion to Halloween comes from being in the hospital over that time. Undoubtedly the children’s ward was decorated for the occasion. Or maybe my aversion comes from the simple fact that every time I saw people with their faces covered by surgical masks, I was having an unhappy experience.
When I was really young, I enjoyed dressing up like a princess or a ballerina (which sadly I can’t seem to find pictures of!). In the snapshot above, I’m wearing a homemade scarecrow costume. (Thanks, Mom!) Not once did I want to dress up as something frightening.
As I’ve mentioned before, my technique for surviving at school was to blend in as much as possible. While Halloween could have been a really fun time for me to experiment with crazy costumes or even disguise myself completely, I almost never did this. By 4th grade, Mom had apparently grown tired of making homemade costumes and instead bought me a cheap clown costume. It was a hideous one-piece polyester affair, with a wire hoop in the seam between the pants and the shirt which made it look like I had huge hips. As I was just entering puberty and beginning to feel even more self conscious about my body, this was not the greatest choice. All day I bumped those awkward hips on chairs, desks, fellow students – you name it. By the time I boarded the bus home (where I had to turn sideways to make it down the aisle), I was ready to burn that stupid costume and never dress up again.
As often happens in childhood, the thing you hated and passionately swore you would never do again is soon forgotten about. The next year, I dressed as a witch, complete with a long black wig, green face paint and a fake nose. It was the first costume that really disguised my true identity and let me blend in with the other kids.
In 6th grade, my middle school put on a Halloween dance. Everyone was to go in costume. Under normal circumstances, I wouldn’t be caught dead going to a school dance, where I envisioned myself sitting alone on the sidelines as everyone else had the time of their lives. However, remembering the anonymity of last year’s witch ensemble, I decided to check it out. I dressed as a fortune teller in a dark dress with a sparkly shawl and the trusty black wig. I wore false eyelashes and bold lipstick. At the dance I hung out with my little group of friends but as I walked among the other students, I held my head high and once again felt liberated from my usual bumbling, apologetic self. Some kids even peered at me and wondered who I was. “I sit behind you in algebra!” I said to one girl, who had apparently been unaware of my existence until that very moment. After the dance (at which there was little to no actual dancing), I was high on adrenaline from having just accomplished a social milestone- my first school dance- without having felt ostracized or awkward or even a little bit self conscious. The power of a costume!
Fortunately as I’ve grown up, I have learned to be much more comfortable in my own skin, helped by little bits of “costume” that have been added along the way, like all the surgeries that have reshaped my face, the dental work and artistry that created my smile and the makeup I wear to accentuate my eyes. Most everyone has some means of improving their natural looks to make themselves presentable.