Category Archives: Feelings

What is my life?

As I sit down to write tonight, I’m already irritated because I can’t find the list of writing prompts I thought I’d saved somewhere on my laptop. I’m annoyed because the screen is too bright, even when I finally figure out where to go to turn it all the way down. I’m frustrated because I keep pushing my own creative pursuits to the back burner, because of my job.

My job. Why do I let it consume me so? I never planned for this. In fact, I used to scoff at people who worked at corporate jobs, those fools who were trapped between cubicle walls in the fluorescent hell of the rat-race. I would never be one of those people, I said.

Yet here I am, going on year 5 of being loyal to the same company. Granted, I’ve never actually had to sit in a cubicle this whole time, and never far from a window, so that may have helped. And of course I have gotten to travel more than I ever have before. So that’s definitely cool. I also get paid more than I ever have before – but that’s not really saying much when you consider what I got paid before.

I work really hard. I work my ass off. I work through lunches. I stay late. I hunch over my laptop in hotel rooms, desperately trying to connect through the VPN so I can catch up on work in the middle of the night. I worry I’m not doing enough, that I haven’t proven myself yet, that I am dispensable. I tell myself that soon I will have to ask for a raise, but I need to prove myself first.

Over the summer, one of my coworkers left to go to a better paying job. As she was leaving, we had a meeting to go over her projects and divvy up her responsibilities among the two of us who would remain. In the meeting, it became obvious that this girl was barely pulling her weight. She was only working on three projects, and even those were shittily done. I get it that she already had one foot out the door, but what the hell? At the time that this happened, I was so busy, I couldn’t take on anything else, so in a way, it worked out that there wasn’t much to actually take on.

As I sat in the meeting where she carefully outlined the three projects she was going to turn over to us, I felt sick to my stomach. It was like there was something wrong with my cognitive function because I just couldn’t believe what I was seeing and hearing. All along, I had just assumed that she was working as hard as I was. How silly of me!

Obviously, I had assumed wrong. Once I got in my car and started driving home, I actually cried and ranted as if I was going through a breakup. I felt so angry and betrayed.

Expressing my rage through Snapchat. Note my “personal kanban” system behind me.

So anyway, that whole situation was the impetus for my most recent feelings of frustration at work. Of course I would like to earn more money, but as I mentioned above, I always thought I had to prove my worth before I could ask for more.

The other day my boss told me that she realized I’m not getting paid enough. I guess in light of the aforementioned spoiled millennial coworker leaving, it really became obvious how unbalanced the workload in our department was. She did point out that when people are good at their jobs, and they get things done, they tend to be asked to do more and more –  because it actually gets done and done properly. So that’s kind of a backhanded compliment because it basically means that I will just keep doing more and more because I am a nice, conscientious person.

On the plus side, I will hopefully be getting a hearty raise before long. It is interesting because the amount she told me she wants to give me is the same amount I was planning to ask for, but I was hesitant because it would be a big jump. So I’m keeping my fingers crossed that it will happen. Otherwise, perhaps I really do need to put on my big girl panties and go out and find somewhere that will compensate me for my work.

Of course none of what I just wrote really addresses my true problem, which is finding time to dedicate to my own, personal creativity. The truth is, I am usually so worn out by work that when I come home, I just want to eat dinner and then veg out. I basically have no friends right now because I never make the effort to reach out to anyone outside of work. I don’t feel like I have the strength.

It’s really bad, and I know I can’t let things keep going like this or I am going to end up being one of those people who has a midlife crisis. Since I spent most of my 20’s in an existential crisis, I really can’t afford another one.

So yeah. That’s where I’m at right now. It’s why I suck at blogging lately, and you never see me posting pictures of my art anymore. It stinks. I don’t like it. I’ve got to get it figured out.

15 Years Ago…

In September 2001, my friend Sarah and I took a trip to Oregon to visit her family, who had just relocated there. It was my first time traveling further west than the Mississippi River, and my first time on a plane since I was 16. Dave and I had only recently started dating, and I cried when he dropped me off for the shuttle to the Newark Airport. I was nervous about flying and being so far from home.

I don’t remember what it was like to go through security, or if there even was security. I just remember meeting Sarah at the gate and commencing the trip. We kept joking about the scene in Meet the Parents where Greg Focker has an altercation with a stewardess over his luggage and keeps saying the word “bomb” over and over. Bomb bomb bomb. You gonna arrest me? Bomb bomb bomb bomb! During the war I was a BOMBadier! Hilarious, right?

As the plane took off, the pilot pointed out how we’d be able to see Manhattan and the Twin Towers as we flew over New York City. The flight seemed like it took forever. We had a layover in Minneapolis which was foreign and weird to my young self. When we finally got to Portland, it was dark and felt like it must have been 2 am, though it was probably more like 7 pm. Sarah’s parents met us at the gate – you could do that then – and drove us another 2+ hours to Newport.

The Oregon coast did not disappoint. We spent the trip exploring the beaches and various scenic overlooks along Route 101. We hung out with Sarah’s family and met other Christadelphians in their area. I played Nintendo with her little brothers. We visited the Tillamook Cheese Factory. It felt a lot like Vermont, if Vermont had been plopped next to the ocean.

Celebrating Sarah’s birthday!

Jet lag hit me hard out there. I was always one for staying up half the night and sleeping in late the next morning, and every night we were staying up so late, it was getting to be early morning at home. My internal clock had no idea what was going on. The day before our flight home, I woke up to one of Sarah’s brothers shaking me and saying my name. I rolled over groggily and somewhat confused. He quickly told me how planes had crashed into the World Trade Center and into the Pentagon, and another one had crashed in a field in PA.

I didn’t really comprehend what he was telling me – I thought maybe he was just pulling my leg to get me to wake up. When I headed into the living room, I saw Sarah’s whole family was gathered there, eyes fixed to the TV. On the screen, black smoke billowed from the towers. It was surreal. It looked like something from a movie, but from the emotions in the reporters voices, it was clearly real and happening live.

The shock of something like this happening in our country was immense. Our plans for that day fell to the wayside. Our flight home the next day was cancelled. The jolly mood we’d been enjoying came to a screeching halt. Personally, I was absolutely terrified.

If you are a Christadelphian, or ever were one, you will get what I am about to say. There was excitement in the air among the group. Christadelphians are constantly on the watch for “signs of the times” pointing to the return of Christ. Usually, to read these signs you needed to be a dedicated student of bible prophecy and have a keen understanding of foreign politics (neither of which I was interested in doing). Well, this particular sign was written in smoke and flames, so even the lowliest among us would see it.

That night, we went to a bible study group at the home of a Christadelphian family nearby. I sat silently as the others chatted excitedly about the possibility of these attacks meaning that the end was near. Maybe this would be the beginning of World War III? Christ’s return was just around the corner! Christadelphians love to fantasize about the Kingdom. “It will be just like being at Bible school!” they always say.

Well, I certainly hoped that wasn’t true that Christ was about to make his way down through the clouds. I had already been questioning my faith and thinking about leaving the Christadelphians, although it would take me several years before I would finally cut the cord. I was still very much afraid of the wrath of the Lord Jesus Himself if he returned.

Since our return flight was cancelled, along with every other flight in the nation, we weren’t sure how we were going to get back to the east coast. No one knew when flights would resume, or if we we’d be able to get on one right away once they did. We looked into renting a car, thinking we could make it a cross-country adventure. But we were too young to drive a rental car across state lines.

I emailed my family and Dave, and my friends back home. I wished I could transport myself through the phone lines somehow. Not knowing what was going to happen was stressful. My mom told me that my Uncle Bill was stuck in Alaska, and my Uncle Brian was stuck in Boston. He had actually been scheduled to fly out the next day on the same flight as the one that hit the north tower.

We were able to get a flight home on the 16th. We left Sarah’s parents house at 12:30 am. We had to arrive at the airport really early because security was expected to be extremely tight. We got there at 2am and got in line. I can’t remember how long it took to get through security – I wrote surprisingly little about it all in my journal. I do remember that once we got through, we bought bagels and they wouldn’t even give us plastic knives to spread the cream cheese. We had to use spoons. And of course there was no joking about bombs this time. Everyone was on edge, but at the same time, it felt like we were all in this together. People actually looked at each other and made small talk.

The flight was direct to Newark. One thing I did write in my journal was that they let us watch movies for free, so we saw Dr. Doolittle and Bridget Jones’ Diary, and I was glad that there was something to keep my mind occupied. As the plane descended into Newark, the scene in lower Manhattan was visible. Smoke was still rising from the rubble.

Sarah and I parted ways and I took a shuttle back up to Connecticut. It was a somber scene as we drove across the George Washington Bridge and looked towards where the towers had been. There was a haze of smoke and dust where just a week before, I had seen the two towers standing. Again, the feeling was surreal.

I was so glad to be home again. I held so tightly to Dave in the days thereafter. We watched so much news coverage and cried so much in those days. I had nightmares about it being the end of the world. I felt sick with grief and worry, even though no one I knew had been directly impacted. The following weekend I drove up to Vermont so I could see my family and hug them all tightly. Everyone was so emotionally raw at that time. It really made you think about what was important, and what wasn’t.

Of course I am grateful that nobody close to me was directly impacted by the events that day. Inconvenienced, maybe. Frightened, definitely. My still heart aches for all the families who lost loved ones that day. In reflecting on the past 15 years, it saddens me to think that we really haven’t come very far, in terms of feeling safe, or unified as a nation. In fact, it seems that we are more divided than ever, and that animosity towards “the others” is growing stronger every day.

Next week, I fly out west again. This time for a business trip. I think I will make more of an effort to keep my head up and look people in the eye. It is so easy to pretend to be occupied on the phone, or so busy with responding to emails that you can’t possibly make small talk. But it helps to remember that we are all just fragile human beings. You never know what difference one small, kind gesture can make.

The F Word

I’m talking about fear, of course. In going through a stack of paper shoved on a shelf, I found what’s written below. I wrote it a little over 4 years ago, when I was underemployed, drowning in student loans and generally feeling like a loser. You don’t always realize how far you’ve come until you look back at where you once were. Of course I have made mistakes and stumbled in the 4 years since I wrote this, and I am constantly thinking about what I can do to grow and become a better person. In some aspects, I have come a very long way. I now have a job that requires me to keep a grip on my fear and plunge forward, whether I am ready or not.

Feb 13, 2012

It’s weird how fear can hold you back so much. Frustrating, too. When logic and reason tell you that you can do whatever you put your mind to – that you could be a great success with lots of effort and perseverance. Yet those beasts within – fear and self doubt and the inner critic – all come thrashing out to put a stop to any ideas of self improvement or attempts to get somewhere in life.

I have spent the last 4 years of my life battling this trinity of self-destruction. Battling is probably an overstatement. More like, being battered by. It’s not like I’ve never felt these feelings before. In fact, much of my life I have struggled to feel “good enough” for society. But most of my life I’ve had structures in place that kept me moving along the stream of progression.

School: growing up and progressing from grade to grade, completing milestones like “get driver’s license”, “take SAT’s” and “graduate high school” kept me occupied during my formative years.

College: I blindly rolled right on to college right after high school. This is where the beginnings of my “grown up” issues really began. Suddenly it hit me that I was an adult and things from here on out were pretty much up to me. I felt seriously unprepared for this.

Religion: Having grown up with religious guidelines and expectations (Be good. Pray. Find a good man to marry. Have babies. Keep the faith). I was able to keep the self-doubt monster at bay for most of my early life.

Job: During my early 20’s I had a “real” job where I was expected to show up on time every day, dress professionally and perform my duties. In turn, I was rewarded with steady pay, good health insurance and a schedule for my days.

The two pillars of Job + Religion kept me safely enclosed in a box for a few years. Many people (I assume) must feel content in such a box because it seems they spend their entire lives inside the parameters set by religion and their careers. This concept didn’t appeal to me though. I knew there must be more to life and I wanted to experience it.

First, I had to get out of the religion. It wasn’t as simple as ceasing to attend church. My whole social life was that church. My family had been part of it for generations. I’d never even chosen to be part of it. I’d been born into it. Until my 20’s it never even occurred to me that I could leave. Even when I left, I had no intention of finding another church. I wanted out of religion, period. In doing this, I essentially said goodbye to a whole community of friends and ‘aunts’ and ‘uncles’. I don’t think I knew just then how brutal that would actually be. Perhaps naively, I had not entirely thought it through. I think I envisioned myself being “not religious” yet somehow continuing to socialize and be welcomed into these people’s homes.

Leaving Christadelphia was like stepping off the edge of a cliff. It was the craziest thing I have ever done, but also the most important decision I made in my life. It took a ton of courage and swallowing my fear to take that step. It took me years to find my footing, and in some ways I am still reeling from the repercussions of that decision, but I do not regret it for one second.

You would think that after making such a bold decision, the rest of my life decisions would have come easy. I would have overcome my fear of failure or rejection or disappointment. Nope. It seems to be one of those things you have to keep pushing.

Just the other day I wrote a list of the things I am afraid of when it comes to writing and sharing my writing publicly. Here goes:

Fear of:

  • failure
  • judgement
  • success
  • looking silly
  • looking dumb
  • being wrong
  • getting ridiculed
  • getting criticized
  • being mocked
  • not being liked
  • being liked too much
  • being seen as arrogant
  • oversharing

Hah – I just threw that last one in there. I don’t want to overshare, but I also am trying to take Brene Brown’s advice of letting oneself be vulnerable. I am going to show up and let myself be seen, as she says.

I am not going to let my fear cockblock my dreams.

Will you come along for the ride?




Pre-Birthday Thoughts

Tomorrow is my 36th birthday.

Thirty-six. Damn. I don’t feel 36, although is it an age anyone really feels? What does any age feel like?

The other day a younger co-worker asked me how old I was going to be on my birthday. When I said 36, her face grew somber. “Wow, that is so old!” Luckily she followed up with, “You don’t look that old!”

*Snapchat filter = not what I actually look like

Ah yes. In my younger days I would have said 36 was middle aged. When my mom was 36, she had four kids, the oldest of whom (me!) was 15. I don’t even know where I’d be if I had a 15-year-old child in my life right now. I guess it’d be a lot different.

In some ways I feel like I should be more grown up by now. I still feel like a kid (or at least a 20-something) most days. I don’t even feel like my body is all that womanly. When I travel for work, I don’t even wear business clothes on the plane (unless I have to), and people assume I’m a college kid. I don’t really mind this… it kind of lets me fly under the radar.

In all honesty, I feel like I’ve fallen into a bit of a rut lately. Maybe I’m just used to switching it up every couple of years, and here I am going on year five of working at the same company. I’ve let slip some of my ambitions, and being reminded of my age is a swift kick in the pants. Oh yeah, I wanted to be an artist. What the hell am I waiting for?

The good news about my job is that recently we’ve started using WordPress to host some of our content. So I’ve been learning how to build a website. I’m really excited about that, because basically since I started this blog I have had the idea that I would upgrade to a paid account and put my art on here and have a little storefront to sell some of my art and tchotchkes. Now that I’ve finished my competent communicator manual, I can devote more time to this page.

Woo hoo!

Well, that’s enough for now. I gotta rest up, now that I’m getting on in years.

Too Ugly for Love?

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.

I figured it had something to do with ectrodactyly, as my blog stats page was showing lots of hits on my Lobster Girl and Exploring Ectrodactyly posts.

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?


Hello from Houston!

Here I am in another hotel, in another city, on another work trip.

That reminds me of an Ani Difranco song…

in a coffee shop in a city
which is every coffee shop
in every city
on a day which is every day

The night before I left, I must have been subconsciously worrying that I wouldn’t wake up in time for my flight the next morning. I went to bed around 10:30, and fell asleep really quickly and soundly. I woke up and saw that there was light coming in from the hall, and I thought that it must be morning already. But Dave wasn’t in bed with me. So I checked the clock and it was 11:30pm! I kind of laughed at myself and rolled over to go back to sleep. Then I woke up again at 12:30. Then 1:30. And so on, until my 4:30 alarm. I mean, come on! Even Dave was like “Why are you awake right now?” when he came in to bed at 1:30. It was ridiculous.

So then, on the plane the next day I was trying to listen to an audiobook but I kept dozing off. My head would flop to the side or roll forward. At one point I even hit my head on the wall of the airplane because I sort of flopped over. Which I guess was better than flopping onto the passenger next to me.

It’s interesting being in Houston and seeing all the trees that are nice and lush and green, and lots of flowers blooming. It’s humid and warm, although it’s been overcast and rainy. Not that it really matters, as I’ve barely left the hotel.

Did you know Asian flight attendants dress like this? I guess their suits aren’t that odd, but the little hair bows and scarves add some flair you don’t usually see.

Last night I did get to leave the hotel and go out to dinner with Susan Hamm, a fellow NFED family member and all-around cool person. When I was planning my trip to Houston I realized that there were quite a lot of NFED people in this town. I knew Susan wasn’t far from my hotel (Houston is huge), so I contacted her to see if she could meet up for dinner, and she said yes!

She took me to a place called Pappasitos, which is Tex Mex food. When the manager found out I was from Connecticut, he gave us free dessert! It was great to spend time with Susan, who I have only ever talked to a few times at family conferences and during NFED liaison calls, but I’d had a feeling she was a kindred spirit. And I was right.

We talked about a lot of things, but one of the things that we talked about was the idea that you can always find someone who’s got it worse than you do. Or maybe it’s better phrased as, “everyone’s got something.”

She talked about how when her son Zach was born she was worried about his condition (he has EEC too), but when she saw what some of the other babies in the hospital were facing, she realized that it could have been worse. I told her about the time when I had my bone graft surgery and the girl in the hospital bed next to me had been born with half a face, and had gone through WAY more surgeries than I had. Of course I did not appreciate her struggle at the time. (I was 11). I was actually kind of pissed that she had it worse than me because I was used to playing the “special kid” card. It’s true- I played that card for all it was worth.

Last night’s Zentangle

Today I was thinking about it more, and that the “worse” isn’t always a direct comparison. It doesn’t  mean that you can always find someone else with the same thing you have, but worse. It may just be that from your perspective that they have it worse than you do in some way. For example,  I’ve had friends who have come from emotionally or physically abusive family situations, and to me that always sounded worse than the cards I had been dealt. I’ve never felt unsafe or unloved in my home, and it’s really sad to me that there are people out there who can’t say that about their own families. But who knows, maybe those same people look at me and feel glad that they haven’t had to endure all the surgeries I’ve been through. Maybe they prefer their messed up home life when it comes down to it?

I think sometimes people get so caught up in their own issues. It’s so easy to feel sorry for yourself if you don’t stop to notice what others are facing. If you just step out and look around, you’ll see that everyone is dealing with some kind of issue. It might not be as obvious as facial scars or birth defects, but, it is painful to them nonetheless.

I’m not saying it’s as simple as noticing that other people struggle too. Obviously it takes more effort, but I think noticing and becoming aware is the first step. I have to remind myself of that sometimes too.

Ok. Off to Zentangle before bed. I have an early flight tomorrow!

Peace / Love / Compassion

Going to give these gel pens a workout.





New York, New York – 9/11 Memorial and World Trade Center Plaza

On Saturday morning, we made the trek down to the World Trade Center Memorial Plaza in lower Manhattan.  Please have a look at the slideshow. My thoughts on the visit are below.

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Going into this, I expected it to be an emotional experience. What else could it be? This was the site of the most horrific event I have witnessed in my lifetime, and the beginning of a decade-plus of war, violence and ever-growing cultural tension.

A little personal history – I actually visited the Twin Towers in March of 2001, with my good friend Jonathan. The towers were massive concrete-faced structures. Humongous and imposing. We took the elevator up to the observation deck and looked out over the world. It was nighttime and the city was all lit up. The view went on for miles in every direction. At the time I took my role as a Vermont chickie very seriously so I was unimpressed with the urban jungle and sprawl. But deep down I had to admit it was cool. Of course the memories of that visit were since tinged with gloom and sadness. Just months later I would see smoke rising up from the stark empty space where the towers had been as I traveled from New Jersey to Connecticut just days after 9/11.

Walking towards the site on this bright Saturday, my mind is on the memories of people running desperately down streets billowing with smoke and ash and papers – so many papers. As we approach, we see the gleaming glass structure of One World Trade Center piercing the blue sky.

Rounding a corner just before entering the plaza, we’re accosted by a guy selling glossy photo books commemorating that day. He eagerly flips through the pages, pointing out full-color scenes of the towers churning out thick black clouds of smoke. “Do you know how many buildings fell after 9/11?” he asks us. “I don’t know,” I admit feebly, “Five?” I’m caught off guard by this interaction, and just want to get past him already. “Seven,” he says, pointing to another page with a graphic showing which buildings were damaged and which fell. “In the museum they charge you $20 for this book, but I only ask $10.”

He also tried to sell us another book with even more photos. Dude. I have seen enough photos of that day. The images are permanently seared into my mind. I do not want to see photos.

Finally, we break free of him and make our way into the plaza. The first thing we notice on the way in is a wing-like white structure soaring over us. I later learn this is the new transportation station – called the Oculus.

We then come upon the first pool – the north pool. I try to envision how huge those towers were, and somehow it seems incongruent with these gaping holes in the ground. It’s like my brain can’t process that these footprints could have held those massive buildings.

At this point I’m doing ok with the emotions. It’s like they haven’t caught up to me yet. We look at the names engraved along the edge of the fountains. I later read that the names were grouped by people who were associated in some way. In some cases it was the flight they were on, or a group of co-workers. You can read more about that here.

As we made our way around the north pool we notice the inscription: Rahma Salie and her unborn child. Wow. I later learned that there were 10 more inscriptions like this one. After we left, I looked up Rahma Salie, since it was her name we happened upon. She and her husband were traveling together on Flight 11. They were Muslim. They were on their way to a wedding in California on September 11.  She was 7 months pregnant with their first child.

Now we turn away from the pool and look up at the tower. One World Trade Center. The Freedom Tower (apparently they don’t call it that anymore though). It is tall and sleek. In the gleaming sunlight, the glass reflects all kinds of colors.

When we turn back to the plaza we see the Survivor Tree. As we get closer we can see that people have put mementos on the tree. There’s a tour group standing in front of it while a tour guide with an abrasive voice describes her 9/11 experience.

Walking towards the south pool, I notice there are Easter bunnies and flowers stuck into two of the names. Something about this sight knocks loose the last of my emotional wall, and the tears start pouring from my eyes. The reality of all the names is overwhelming. And remembering all the people who are still alive and aching today for the loss of their family members, friends, co-workers….

We step away from the pool and walk under the trees. Dave and I sit and watch people while I cry for a bit. The tour group is still mesmerized by the Survivor Tree. Clusters of teenage girls huddle together, underdressed in summery clothes. The majority of the occupants of the plaza at this time are tourists. Many of them seem too cheerful and light and I want to scream at them to stop smiling and sober up. But I don’t. I realize you can’t expect people to be acting like they’re at a funeral when they visit a memorial. You can’t force people to be sad.

Once I’ve pulled myself together again, we walk around the other side of the south pool. I want to take a picture of the pool with the tower behind it, but as I approach, a young couple jumps in front of me. They look at the pool for approximately two seconds, and then the guy goes back to looking at his phone. I expect them to move along, so I wait patiently. The girl then begins primping herself in preparation for a selfie. Seriously. My eyes were rolling so hard I’m lucky they didn’t roll right out. Finally, satisfied with her photo shoot, she moves on.

As that’s going on, the couple on the other side of us gives each other a sheepish grin before quickly turning around and tossing coins over their shoulders into the fountain. What the hell? I’ve got nothing against coin-tossing in other fountains, but this is like throwing coins into a grave. I don’t know what possesses people sometimes.

Finally everyone with offensive behavior clears out from my shot and I’m able to get the picture of the pool and tower behind. It’s an odd mix of macabre and shiny new hopefulness. A least I think so.

We leave the plaza now and on the way out we notice the FDNY house that is RIGHT THERE. Like literally in ground zero. These guys were on the scene first because the scene was happening right around them. See their website.

All in all, we probably spent an hour walking around the plaza. There is a 9/11 museum on the site (it’s the short, mirrored building in some of the north pool pictures in the slide show). We did not go into the museum. I don’t know if I’d ever be ready to go in.

One World Trade Center also has an Observatory. It probably would have been a great day to go up there, actually, as it was clear and sunny. But I really just wanted to see the plaza, and that was enough.

So that was that.

Our next stop was the Hornblower Harbor Cruise…. stay tuned.

Negative Imprint

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!

Show Me Your Hands

Yesterday I found out that one of my followers on Instagram is a devotee


I knew this might happen when I went public with the blog and put a couple of videos on YouTube. 

My first reaction to finding out that someone is looking at pictures of me solely because they think my deformed hands or feet are sexy was one of feeling physically ill. I felt like my privacy had been violated somehow. 

After taking some time to mull it over, I began to wonder if it was really any worse than finding out someone was attracted to me because I had blonde hair or because they liked some other feature, such as my fine ass. (I kid.) Either way, it’s objectifying me down to whatever part it is they are turned on by.

Then I thought about celebrities and how all kinds of people are admiring them from afar and likely including them in sexual fantasies all hours of the day and night. So maybe if I have one or two guys scouring my blog or Instagram feeds trying to find pictures of my hands and feet (of which there really aren’t many), what harm is there really in it?

This person suggested that I could make money if I posted videos of myself doing stuff with my hands or feet. Not even sexual things, but just regular things. Somehow that is a huge turn on. 

I’m kind of glad I found this out now, as I was considering making a video of myself playing the piano and sharing it here and on YouTube. Scratch that! 

Maybe I am being too sensitive about it. If someone wants to diddle themselves while watching a completely nonsexual video that I posted online, why should I worry about it?  It’s completely within my control whether I feed into it or not, and I choose not to. 

To my friends with ectrodactyly, if someone asks you to send pics of your hands, I have a few choice photo responses you can use. 


Jazz hands!
No pics for you, wanker.
Straight up nope.

I’m curious to hear from others. Have you been contacted by a devotee? How did you react? Do you think it’s a harmless side effect of making your presence known online? Or are we boarding the train to creepy town when we interact with these people?

Are you a devotee? Why are you attracted to disability or deformity? I can understand being interested from a curiosity standpoint, but why is it sexual? 

Hello from the Other Side (of the Atlantic)

Goodness me, it has been quite some time since I last wrote. I was busy gearing up for my first overseas trip to Amsterdam and Germany.

Hello from Amsterdam!

But first, a story. When I was in fifth grade, I went on my first overnight school trip. We went to a place called PEEC in the Pocono mountains of Pennsylvania. I forget how long we were there for, but it was at least a couple of nights.

I have always been a homebody. Even when I would sleep over at my friend’s house next door, I would look out the window at my house and feel homesick. If I hadn’t been so afraid of the dark I would have made the trek across our yards so I could be in my own home with mommy and daddy and sleeping right down the hall.

So naturally I was really nervous to go to PEEC. I had a yucky feeling in the pit of my stomach and I wanted to cry and tell my mom I was sick and I should stay home instead. There’s a possibility that I actually DID do that, but clearly she did not fall for it.

My friend Jessica’s mom came and picked me up on the big day. She drove us to our school, where there were two big charter busses waiting. Jessica was excited. I was wondering if I could hightail it across the soccer field and make it to the cover of the woods before anyone noticed. How long would it take me to get home if I walked the whole way?

We put our stuff into the luggage compartment of the bus. As we did so, I realized that I’d forgotten my pillow. That was the final straw. I burst into tears. I was not going to survive this trip without my pillow! There wasn’t time for us to go back to the house and get it. What would I do?

Jessica talked me down from the hysteria. She pointed out that she would not enjoy the trip if I didn’t come. She told me I was one of her best friends and that she needed me to be there with her. She also pointed out that I could use my stuffed Shamu as a pillow. (Yes, I had remembered to grab an enormous stuffed killer whale before I left the house, but not my pillow.) She promised we would have fun.

And she was right. Once the bus pulled away from the school and the waving parents beside their minivans disappeared over the horizon, I began to feel better. I ended up having a blast and whenever I think back to those days I recall the PEEC trip so fondly. It was the highlight of fifth grade.

Why am I sharing this, you ask? Well, all these years later I still struggle with that same feeling of dread when approaching a trip. Even if it’s a trip I actually want to take.

I am still a homebody. I could easily stay at home for an entire week and not feel restless whatsoever. I love being home. Sometimes, I need to stop at the store on the way home from work to pick something up, but mid-drive I will decide that I’d rather just go home.

Of course I do enjoy traveling. I want to see different parts of the world and experience different cultures. It all sounds interesting and fun until it comes time to pack the suitcase and begin the journey.

One of the other things that stresses me out about traveling is making sure I have all my accoutrements, as I like to call them. Pretty much the most important items on my list are: eye drops, eye lube for bedtime, eye scrub, toothbrush and floss, mouthwash and lotion. If I ever forgot any of those, I would break down. And no Shamu pillow would help.

Last week I was feeling a bit irritated about EEC and how it means I have to carry a bunch of extra crap (see above list), and if I don’t, my eyes will flare up and make me look horrible. I was also fretting about how my eyes would hold up during the flight. It is an overnight flight, but the night is shortened by the fact that Amsterdam is 6 hours ahead of us, so by the time you get there it is early morning.

Fortunately, with some forethought and planning I was able to manage. I brought my eye lube with me on the plane, and when I was ready to attempt to sleep, I went to the bathroom and put the lube in my eyes. When I got back to my seat I put on the eye mask that Dave got for me. It’s a really nice one. It has a layer of foam in it so it’s really soft, and then there are indents where your eyeballs go, so the mask is not pressing on your eyelids. It’s so comfy.

I put the mask on and attempted to sleep. I didn’t get much sleep for various  reasons, but my eyes were still loving the rest. It felt like my eyeballs were sleeping without me.

When we were about to land, I put some eye drops in and wiped away the extra lube with a tissue. My eyes were still more tired than they would have been on a full nights sleep, but they felt better than they would have if I had not used the lube and the mask. Of course I was also putting eye drops in like nobody’s business all day. But it really helped keep my eyes going.

Anyway- so I was in Amsterdam yesterday and then we took the train down to Dusseldorf, which is where I am now. I wanted to write about all my observations of Amsterdam and Germany so far, but now I am tired. I should get to sleep soon because our meetings start tomorrow.

I’ll try to write again soon and talk about the actual trip, not how I kept my eyes moist the whole time.

auf Wiedersehen!