Hey there! It’s been a while since I wrote a current-events post. As usual, I am busy thinking up so many things I want to do and trying to do everything at once and then feeling overwhelmed and rushed and anxious about life.
How do you find balance? I constantly feel the need to create things; to produce. Whether it be writing or drawing or painting, it’s like an itch inside me that I am forever trying to scratch. That’s why I like Zentangle so much – it is easy to bang out a quick drawing in a short amount of time, and most often it looks pretty cool.
A few weeks ago I was out in sunny Southern California at a work-related conference, and they had a motivational speaker give the keynote. He was billed as a magician and a corporate speaker, and my first thought was that his performance was probably going to be the cheesiest thing I’d seen in a while. Fortunately, I was very wrong. He was amazing, and quite inspirational. His name is Vinh Giang – here’s his promo video.
Once I got home, I looked up Vinh on YouTube and I watched a bunch of his stuff so I could keep the inspiration going. I also happened upon a TED talk by David Litchfield, where he talked about how he challenged himself to draw something every day for a year.
So of course I got excited and inspired and decided to give myself a daily art challenge. Notice I said art and not just drawing, because why would I limit myself? (Insert eye-rolling emoji here… )
You may have already found it, or seen my oversharing of my daily pieces on FB, Instagram, LinkedIn, Google+ and wherever else I could find… but if somehow you missed all of these, my daily art challenge site can be found here:
I am already kind of regretting that I made it a daily challenge instead of weekly or something, but so far I have managed to do it every day.
Vinh says in his talks: the biggest illusion you will ever experience in your life is when you tell yourself that something cannot be done. I’ve certainly fallen victim to this mentality many times. It’s something I want to change – I want to believe in myself, that one day I will be a professional writer and a professional illustrator. I don’t want to spend my whole life just thinking of what might have been if only I’d tried a little harder.
So, I will keep blogging and keep arting, and one day I will figure out how to make it all work!
Today’s post is probably going to be a mishmash of whatever pops into my mind as I sit here. I’m at a park, watching the bright green grass appear from beneath the melting snow. We got several inches overnight but already the sun has chased away most of it.
I’ve been thinking about taking you, blog readers, along with me on a journey of self discovery. I recently came across this YouTube video by Teal Swan that got my mental wheels turning. It was about figuring out what your negative imprint is, and in turn, figuring out what your life purpose is. Check out the video description (in the link) for a more thorough explanation.
It really struck a chord with me because lately I’ve been feeling very lonely. Over the years I have lost my very closest friends for one reason or another and it has left me feeling somewhat rejected and alone. I’ve lost the motivation to even try to make new friends, or at least to really connect with them in a meaningful way.
I realize it’s on me to try to make the effort to connect with more people, but after being burned so badly and on more than one occasion, I’ve resigned myself to really focusing only on my relationship with Dave. Of course I try to give time to my family as well, but even that isn’t going all that well, as we all live in different states and no one really likes to talk on the phone.
I’m not sure what my negative imprint is, whether it is loneliness, or rejection, or worthlessness. Or it could be something else that I haven’t thought of yet. In the video, she says whatever it is will be very painful to contemplate, so I haven’t set aside time to really delve into it yet. I have a feeling it’s something along those lines though, and that my vibrational opposite; the thing that I most want out of life, is a sense of deep, meaningful connection, or perhaps helping others to find connection or self worth.
It’s funny because I have built up so many walls over the years that I’m sure I don’t come across as a very open or connectable person when I am out in public. I generally avoid having conversations or interactions with people I don’t know. In fact, the other night, we were at a performance at the high school and during intermission we were standing at our seats and chatting for a few minutes. I noticed a young girl in the row behind us was checking out my hands. I tried not to let it get to me but then I saw her whispering to her grandmother, folding back two of her fingers and pointing at me. So I moved my hands to the other side of the chair so she wouldn’t see them. Afterwards I thought, why didn’t I just let her look? Or meet her eye and smile? Instead it’s like an instinct for me to just hide and ignore. Ugh. I don’t even want to be that way but it always catches me off guard and I act like a jerk.
Anyway. That’s it for now- time to head back to the office!
Here I am at the park again. I didn’t get to return last week even though I wrote about how much I like taking breaks. I had a lunch meeting one day, worked through the next day and then went out to lunch another day.
Last time I wrote I mentioned the books I was reading. Well, I finished the second one, The Untethered Soul. I liked it even better than Broken Open. Granted, they are not the same style book, but I think I liked the cut-to-the-chase style of the second one better.
The book starts out talking about the voice in your head and how to step back and disconnect yourself from it. In a way I think I have already done that, thanks in large part to a great therapist I used to see. But I can remember back to the days where the voice inside my head was not very nice and really not very healthy. I’m not saying I have no inner voice now, but it’s not a jerk. In the rare moments that it is a jerk, I tell it to shut up.
Later in the book, the author talks about how everyone has pain inside them and that you can either hold on to it and try to protect yourself from anything that touches that nerve, or you can deal with the pain and let it go.
He used a great analogy of having a thorn in your arm that pressed against a nerve. Every time the thorn was touched or bumped it would cause pain, but if you were really careful and didn’t let anything touch it, you could live with it. In order to keep yourself from accidentally bumping it, you would build a device that would keep you from rolling onto it while you slept, and keep people from bumping into you when you went out. The down side of this device is that no one would be able to get close to you, even people you love.
The point is, you do the same thing when you have an old hurt that you can’t let go. If you build up these walls or these rules about what’s allowed or not allowed, then you’re essentially building a prison around yourself. And what kind of life is that to live?
The obvious solution is to remove the thorn and to deal with the pain in the moment and then let go of it.
Again, I can thank my former therapist for getting me started on that path years ago, though I didn’t realize at the time what it meant. I used to hold on to so much pain. I would cry at the sight of an Operation Smile ad, because it struck such a nerve with me. If someone made a joke about blondes or about a person with a lisp, I would raise my hackles. And don’t even get me started on how I felt and reacted to anything related to my former religion.
I’m not saying that I am now floating on a cloud of enlightenment or anything, but I am definitely more calm and content than I used to be. Much of that is because I have learned to let things go. Let it go! Live your life and let go of the people and the circumstances that have done you wrong. Life is too short to hold grudges and waste energy on negativity.
I didn’t mean for this post to turn into a motivational moment, but I think I may have just decided what my next Toastmaster speech will be about!
Time for me to head back to the office. Namaste, friends!
I’m currently sitting at the Mazda dealership while my car gets it’s 5,000 mile service. It’s crazy that I’ve already driven that many miles, but it adds up quickly when you’re zoom-zooming around New England.
The dealer just walked in after parking that red Miata and said “You could be driving that! You’d fit right in it!” Hah. Maybe next time, buddy.
This afternoon I am heading up to Springfield, MA to pick up Kris, and then we are zoom-zooming all the way up to Grand Isle, VT.
I CAN HARDLY WAIT.
One thing I wanted to talk about today was the story of Zion Harvey’s bilateral hand transplant. If you follow my Facebook page, you may have seen the link I posted there the other day.
Here is a longer version, which Dave and I watched last night: Zion’s Hand Transplant. I highly recommend watching this one, even if you’ve already seen the shorter one. Grab some tissues.
Oh my goodness. This story touched me on many levels. First of all, any time I see a kid having surgery, there is a part of me that is right there on the table with them. Second, the hospital involved is Children’s Hospital of Philadelphia, aka, CHOP, where I spent a bit (ok, a lot) of time when I was a kid. I was probably operated on in that same room. So it hits close to home for those reasons.
All of that aside, the maturity level of this kid is insane. It’s hard to imagine having been through all that he has faced in his life already. His attitude and outlook is incredible. It’s so cool that he’s able to have this procedure, although as you’ll see, it is not without risks and a lifetime of maintenance.
Also, can we just take a moment to consider the complexity of this surgery? As the doctor says in the video, the vessels and tendons and everything are smaller in children, so that adds a challenge, but look at how many tubes and cords (for lack of a better term) there are to attach! Plus getting the bones to line up and everything! Omg. And I can’t even imagine how painful the healing process must be. Seriously.
Of course I also think about the child that the hands came from. What happened? How did his/her parents decide to donate? Will they see this story and know that these hands belonged to their child? And what will it be like for Zion to grow up looking at hands that once belonged to someone else?
I was initially made aware of this story when a friend with EEC posted this on her page and mentioned that she would be interested in having a hand transplant.
At first I was surprised that she would want such a thing, but then she reminded me that she does not have any thumbs. Still, it seems like an incredibly intense procedure to go through if you can manage without. I mean, you have to take anti-rejection drugs for the rest of your life, which can cause a whole bunch of other problems.
I consider myself one of the lucky ones as far as ectrodactyly goes. I might not have 5 fingers on each hand, but the fingers I do have work well and I haven’t needed any surgery on my hands at all. I’ll likely never be a hand model, or a thumb wrestling champion, but I am definitely not at hand transplant level either. I can only imagine how tough a decision it would be to make, though obviously if you do not have hands or the hands you have don’t function properly, then perhaps it makes the decision easier.
That’s my opinion for now. I’d be interested to hear from others. Would you have a hand transplant if you could?
This morning I woke up at 3:30. I rolled over and went back to sleep for a bit, but the dark corners of my mind harbored questions about the day ahead… Would I be stricken with altitude sickness upon reaching the top of Pikes Peak? Would I lose control of my bike and plunge to my death in a rocky crevasse? Would I get to see a mountain goat?
A few hours later, we were at the bike office. We signed the paperwork that said we would not sue them if we got hurt or died. We ate a quick breakfast and then they loaded us into the vans and took us up to the cog railway station. There was a bit of milling about there while we waited for the departure time. One of the guides pointed out the staircase that goes up the mountain, called the Manitou Springs Incline. People hike this. On purpose.
At 8 am, our cog train began the ascent. The first part was through Aspen and Pine forests. I saw a Pika scurry through the underbrush. The train conductor told interesting historical facts and some punny jokes on the way up.
After a while we got up above the tree line. The conductor told about how Katharine Lee Bates went up Pikes Peak in the summer of 1893 and was so inspired that she wrote the poem that we now know as America the Beautiful. Her original words were a tad different…
O beautiful for halcyon skies,
For amber waves of grain,
For purple mountain majesties
Above the enameled plain!
God shed His grace on thee,
Till souls wax fair as earth and air
And music-hearted sea!
Then, we rounded a corner and I got a glimpse of the fruited plain, and I suddenly became verklempt. The pictures I took don’t do it justice, but let me tell you, it was amazing. I managed to keep myself from weeping openly, but It took effort. My heart and soul were overcome by the grandeur of it all.
Now, on to the part you really want to know about… We got to the top and almost instantly we were shrouded in clouds, so there was no scenic overlooking, unfortunately. I noticed I felt a little buzzed, which apparently is how you feel at 14,000+ feet. (My normal home is at 750 feet).
We applied more layers (it was 32 degrees up there) and got situated with the bikes. Mom even had a Go-Pro, so there will be video evidence of our journey. The guide gave everyone instructions on how to operate the bikes and how to not die.
And then we were off. The slope was steep and there were no guardrails, but everyone in our group managed to stay on the road and not have any problems. After the first mile or so, I felt more confident and began passing I some of the slower bikers. ZOOM ZOOM!
Here are a couple of photos.
Once we were almost to the bottom, the group pulled over and I noticed a vehicle with Pennsylvania license plates pull over. Suzanne and Will (also in the area for the upcoming NFED conference) popped out and ran over to say a quick hello. I had told them we’d be doing this, but it was still pretty cool that the timing worked out!After that it was only a mile or so to get to the restaurant where we would have lunch. Ahh. We were exhilarated and excited to have completed such a cool adventure!
In the afternoon we headed up to Boulder, where we are staying in an odd hotel which seems to have once been an apartment building. I don’t know. But it’s quiet, at least. We went to Pearl Street to mosey around and shop, and then had a yummy veg dinner. Our waiter was a total stoner and kept giggling after every interaction we had with him. It was hilarious.
Tomorrow is Celestial Seasonings (don’t laugh, I enjoy tea!) and then down to Denver to get ready for the research study that I and other EEC and AEC people will be doing on Wednesday morning.
Now I shall rest comfortably with the knowledge that I can actually handle 14,114 feet above sea level and also I ride a mountain bike downhill like nobody’s business.
Oh, and I did not get to see any wildlife except for the aforementioned pika and a couple of marmots (so cuute!). Apparently we rode past some sheep but I was concentrating on not having a heart attack (it was during one of the rare uphill parts) and failed to notice. However, it seems that Mom caught it with the Go-Pro so I will get to see it (and myself whizzing by it) later.
Last Saturday I hopped in my (NEW!) car and zoomed down to White Plains. It was a lovely sunny morning, although it was close to 0° F. When I arrived in White Plains, I drove around the block about 5 times before figuring out where the hotel actually was. Way to skimp on signage, Cambria Suites. I reluctantly handed over my (NEW!) car to the valet and turned my attention to the day ahead.
I arrived bright and squirrely and bounded up to the hotel lobby, where I greeted the NFED staffers, Kelley and Lea, and got to work at the registration table. I was soon joined by a very sweet young lady named Cami who helped check people in as they arrived.
Of course I was happy to meet a lot of folks I hadn’t met before, but there were two families coming that I was especially excited to meet.
One was a young couple who had recently found out that their unborn son is affected with EEC. Ultrasound technology for the win! The father, Dennis, had reached out to me via email just two weeks before, after having found my blog. (I’ll write more about that cool story in another post.) I encouraged them to take the trip down from Maine so they could experience the awesomeness of a family conference.
The other family that I was looking forward to seeing was a guy (Sean) with EEC who I had known about from his aunt (Sally), but I had yet to meet in person. A couple of years ago, Sally and I had gone out for coffee and ended up spending something like four hours sitting and talking about life with EEC. Her sister (Sean’s mother) had EEC, so Sally knew all about how it was for someone to grow up with EEC and all of the challenges she had faced. She had been trying to get Sean involved with the NFED, but he had been reluctant. Finally I was going to meet this guy and his girlfriend Sharon!
Back to the conference – the morning kicked off with a heartwarming intro by DeeDee Olsen. Then, Kelley and Lea introduced themselves and spoke about the staff and services the NFED offers. Then, Tessa Field from Edimer gave a talk about the research that Edimer has been doing for XLHED. I found this really interesting, as I have seen Tessa at the last several conferences and I was aware of the XLHED research and treatment progress, but I had never actually sat in on one of the lectures. Tessa is an excellent presenter. She’s able to explain genetics in a way that the average person can understand.
Suddenly it was time for lunch! I made a sandwich and plopped a scoop of what I thought was potato salad on my plate. Sean’s girlfriend Sharon was beside me as we ate and we talked a lot. At one point I put a forkful of the potato salad into my mouth and realized instantly that it was NOT potato salad, but chicken salad. Horrors! Sharon had just asked me a question and was looking directly at me as I desperately tried to decide what to do with the offending meat product in my mouth. I smiled and held up my finger to indicate that my mouth was full. As soon as she looked away I blurted the contents into my napkin. It did cross my mind to chew and swallow, but since I haven’t had meat in so long I was afraid it might cause digestive calamity and ain’t nobody got time for that.
Anyway, talking with Sean and Sharon was really cool. It’s always fun to meet another person with EEC and go through all the stuff that is “wrong” with you, and realize that it’s actually tied to EEC, and that other people with EEC have the same problems.
After lunch, Dr. Tim Wright gave an entertaining overview of dental treatment for kids with ectodermal dysplasias. The final presentation was by a doctor who explained genetic testing. It was a difficult talk to follow and unfortunately I think it may have left people even more confused about genetics than they were before. Afterwards, I tried to explain to the others at my table what autosomal dominance is, but I don’t know if I did any better.
That was it for the presentations, and we had some time before dinner to chat. I mostly talked to Sean and Sharon, but I also got to talk with some other people I hadn’t met previously, and catch up a bit with the “regulars”. A lot of people left at that time, and by the time the pizza was set out for dinner, there were only two tables of people left.
I made sure to grab a slice of pizza that did not contain meat, and I made my way over to talk to Dennis, who I really hadn’t gotten a chance to talk to earlier in the day. By then he had made friends with lots of people, telling them the story of how he and Lindsay found out their son would have EEC. Everyone was really excited that they had found their way to the NFED so early, and I felt a tiny bit of pride that my blog may have been the beacon that helped them find their way.
By about 6pm, everyone was gone and I sat talking with Lea and Kelley for a bit, while a handsome waiter cleaned up around us. We reflected on the day and talked about how we were looking forward to the national conference in Colorado in July. We said goodbyes soon after that, and I headed down to retrieve my (NEW!) car from the valet.
As I waited for my car, I noticed that the valets were actually driving the cars in and out of elevators, and that the garage must have been a floor below us. As I watched, a car emerged from the elevator and scraped it’s side along the edge of the brick wall next to the elevator. My mouth fell open, and as the car drove closer I could see that the other side was equally scratched. I realized that it must have been one of the guys who worked there, but I was rather unnerved at his carelessness. My car finally emerged without any damage and I leapt in and got out of there before anything else could happen. Crazyness!
So in conclusion… if you happen to have a NFED Regional Conference in your area, I highly encourage you to attend (just avoid the valet parking option). It is a great opportunity to connect with more local people, and to find out how the NFED can help you (or perhaps, how you can help the NFED). I forgot to mention this earlier in the post, but they provide a childcare option so that your kids can play and meet other kids while you hang out with the adults.
It was great to connect with new people and to have the opportunity to see some of my longtime NFED peeps in the wintertime. Less than five months to go until the conference in Colorado! Woo!
Photo Credits: Lea and Kelley took the photos and I snagged them from the NFED Facebook Page.
October was the busiest month I’ve had, work-wise, in a really long time. Possibly ever. We had two week-long events which required that I (and my team) get to work early, be “on” all day, and then stay out late – really late – to follow everything through. It’s not brain surgery, I know, and I wouldn’t hesitate to admit that there are many more stressful occupations out there than mine. But for me, it was a lot.
By nature I am a rather low-key person. Not lazy or slow, but just… calm. I like to be calm. I like to enjoy the environment I’m in and observe. I’m an observer. I don’t like to feel rushed or stressed or pressured. In fact, I really dislike feeling those things and have been known to have a meltdown when I feel too overwhelmed. I don’t like having meltdowns or feeling out of control.
Last year I made a decision. I was working in the regulatory department at my company. My responsibilities were to maintain all of our company’s MSDS (material safety data sheets) and to answer customer’s questions about our products. In some ways I enjoyed the job. I had my own office, with a door that I could close when I wanted some privacy. I could come in at 8:30, take an hour lunch, and leave at 5 every day. I was able to forget about work when I left at 5, and not think about it on the weekends. I enjoyed interacting with customers (though it was only through email and phone calls), and I felt satisfied when I made process improvements or solved problems on the job.
However, there were a lot of down sides to the job. I didn’t particularly enjoy the subject matter, and after being in the position for a year and a half, I was getting bored. I knew I had to do something about it. As much as I like to be calm and collected, I also like to push myself out of my comfort zone because as they say, that’s where the magic happens. There were two options. One was to remain in that job and wait for something exciting to happen. The other was to get up out of my chair and make it happen. Part of me said, stay in the chair! Get another cup of tea and a cookie! It’s safe here! But deep down I knew, if I wanted change, I had to be the one to initiate it.
A position had opened up in the Marketing department. I didn’t really know anything about marketing, but I knew that it involved lots of creativity, which is something I like to think I have an abundance of. I also knew it would force me out of my comfort zone, which would enable me to grow both professionally and personally. I spoke with the manager of the department, and with HR and expressed my interest in the position. It took several months for things to come together, but finally, in March, I was officially a member of the marketing team. Hooray!
The last seven months have been chock-full of learning experiences for me. At first, I was pretty worried about messing something up. I dreaded some of the things I had to do, because I had never done them before and I wasn’t even sure HOW to do them. But I managed, one way or another, to get them done and to learn throughout each process.
In these past few months, I’ve found myself speaking in front of a room full of people, being a tour guide for large groups of visitors around our campus and socializing with guests at cocktail parties (admittedly, this part needs some work.) I’ve put together graphics for posters, organized a trade show booth, planned customer seminars, and even gone on a ghost tour. I’m getting to use my PhotoShop and InDesign skills again, plus hone my writing skills. I don’t get to have my own office anymore, and I often have to stay late and bring work home on the weekends. I may be occasionally exhausted from it all, but I am actually happy and not even remotely thinking about quitting.*
At the end of our last big event, I returned to my hotel room thinking that I would immediately collapse into bed and sleep for 14 hours. However, I was so elated that the event had gone well, and especially that one of the activities that I had come up with (a Murder Mystery!) was a huge success, that I stayed up for another two hours, just reflecting gleefully on how it had all gone. Instead of feeling exhausted, I was actually energized.
One thing that the photos above don’t depict is that leaving your comfort zone isn’t a one-time deal. Maybe in some rare situation would stepping outside your zone cause your life to change completely, but in my experience, it really seems to be a gradual process. I suppose things get easier with each step along the way – I know that a lot of little things have added up to get me to where I am today, and that there is still a long road ahead of me. If you’d told high-school me that one day I would comfortably stand in front of a group of strangers and speak without feeling like I was going to projectile-vomit over the first row, I wouldn’t have believed it.
Every day there is some degree of struggle for me to push myself out there. Some days are tougher than others. When I was a kid, I often literally pulled the covers over my head and took a sick day so I could just avoid everything that scared me. While I still have a strong desire to avoid things that I find unpleasant, I have learned that most of the time it’s really not so bad, and even if something does go badly, you can usually get a good laugh out of it later.
Of course I am not suggesting that I have it all figured out. I can feel quite insecure. I can procrastinate like nobody’s business. There are times where I contemplate just staying in bed with the covers over my head. But in the end, I don’t want to be just another “survivor”. I want to get out and embrace life, to enjoy it and learn from it.
Tonight I plan to put another foot forward on my journey, as I plan to re-join Toastmasters and improve my public speaking and presentation skills. I’m joining a different group than the one I was a member of last time, so I am looking forward to meeting new people and having the opportunity to share my story with them.
What’s something you’ve done to intentionally push yourself outside your comfort zone?
*Historically, I tend to quit jobs after about 2 years, though I often begin contemplating quitting within the first 6 months. Only one previous employer held my attention for nearly 5 years. I’m hoping to break that record with my current employer!
I recently came across something cool: The What’s Underneath Project. The idea is to get people to talk about their sense of style and how they present themselves as they are slowly removing pieces of clothing (down to their undies). It’s not a sexy striptease, but a removal of layers and defenses. I think the idea is to show that “style” goes deeper than the clothes you wear. I obsessively watched nearly all these videos yesterday and found a lot of them to be really interesting because people had some really profound things to say. Other people, I just wanted to slap because, hello, you look freaking awesome, stop hating yourself.
Of course the one I really want you to look at is Melanie Gaydos’ video. Melanie is a model and has a form of ectodermal dysplasia. I’ve talked to Melanie a couple of times online, and I was always impressed with her strong sense of self and her ability to push herself out into the public eye. When I was younger I had fantasies of being famous, but seeing as I can’t even go to the grocery store in flip-flops, for fear of people gawking at my feet, I don’t expect I’d handle fame too well. 🙂
Melanie has some incredibly profound things to say in her video. Check it out and be amazed.
I really hope to meet this chick in person someday soon! Rock on, Melanie!
When I was a kid, sometimes Mom would go out in the evenings and Dad would supervise our after-dinner activities, which consisted of fidgeting around while trying to complete homework assignments on the dining room table, having a “bed-time snack” and then being wrestled into pajamas and teeth-cleaning routines.
Kris and I would get pretty pumped when Mom went out, because we knew it was dance-party time. Dad’s favorite band was a progressive-rock group called Yes. He would put one of their records on the stereo in the living room, pull the speakers out from their normal position against the wall, and crank up the volume.
Kris and I were supposed to wash the dishes and clean up the kitchen after dinner each night. On the nights where Yes was blasting from the speakers, we’d have a little more spring in our step. We couldn’t wait to get out into the living room where we would careen wildly from one side of the room to the next, jumping onto couches and contorting our bodies along with the psychedelic music.
As we grew up, the living room dance music changed and happened less frequently. However, we never lost our appreciation for Yes and their glorious symphonic masterpieces.
Last week, Yes was in town, and Kris, Dad and I went to see them. We went to the concert with a bit of hesitation, worrying that time and age would have put a damper on their awesomeness that would leave us feeling sad and nostalgic for the old days. Fortunately, they did not disappoint.
We managed to restrain ourselves from dancing on the furniture (unlike some other attendees), but getting to experience the old, familiar songs played live was so awesome. I looked over at my dad at one point and saw him grinning from ear to ear. It really warmed my heart in so many ways.
Part of what made the experience so cool was that their new lead singer, Jon Davison (who looks like Aragorn) has an amazing voice and to my ear at least (literally, I have one ear that works, people!) he sounded just like Jon Anderson.
The whole concert turned out to be awesome and really rekindled my appreciation for Yes. I’ve been listening to Close to the Edge on repeat for the last couple of days. I may or may not be having my own dance parties in the morning as I get ready for work.
P.S. Mom was not left out of all the dance-party nights, but they were definitely wilder in her absence. However, she got to go with Dad to Yes concerts in the 70’s and 80’s where I bet they didn’t need to use a fog-machine to create smoky effects, if you know what I mean.
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.