In 4th or 5th grade, we read Z for Zachariah — a story about a 16-year-old girl surviving a post-nuclear-apocalypse world on her family’s farm in a sheltered valley. This story stuck with me for a long, long time. It was a vast departure from my usual fare of Little House on the Prairie and Sweet Valley High books, but it made me want to learn enough about basic survival to assure myself I could manage to withstand a nuclear holocaust too.
Then, while I was still way too young for this subject material, I read a Christopher Pike novel called Whisper of Death, in which a couple goes to have an abortion and somehow end up in a deserted world with a few of their friends. I think this was the book where I got the idea of breaking into abandoned stores to grab all the food and drinks and supplies I could ever need. Talk about convenience!
Later, I’d read Steven King’s The Stand and I could picture myself as one of the characters (Frances Goldsmith, naturally), managing to steel myself both physically and emotionally as I survived this brave new world.
In my teens and early 20’s, I imagined myself being knowledgeable and skilled enough to make it in a post-apocalyptic world, in part, thanks to the tips and tricks I’d picked up in the aforementioned books. I was a strong, independent woman, and I did not need civilization in order to thrive!
It was probably about the time that I read Cormac McCarthy’s The Road that I began to doubt my stamina for life after civilization as we know it. What exactly, would be the point of fighting to survive, when the world that is left is just a terrible, crappy place and everyone that remains just wants to kill you?
As I got older, I gradually realized just how high-maintenance I actually am and how difficult it would be for me to continue thriving without access to things like air conditioning on hot days, my ear and eye doctors, plus all the eye drops and eye lube I have to use to keep my eyes healthy. Not to mention, if most or all of the people I love were suddenly, tragically eliminated in a catastrophic event… I don’t think I’d have much desire to go on living at that point.
I think it’s good to come to the realization that we’re not invincible, and that’s okay. It makes each day all the more sweeter when you understand how temporary it all is.
Growing up as a Christadelphian, there was always this sense that we had forever ahead of us. Almost like we didn’t need to express how much we loved each other, or to worry about losing anyone because there’d always be the Kingdom! Since leaving that world, and after going through several traumas within our family, (mini-apocalypses, if you will), I’ve learned to appreciate every moment together and to do my best to keep my relationships with my loved ones as open and honest as possible and never take the future for granted.
I do still enjoy reading post-apocalypse or dystopian future stories and living vicariously though the characters, but I no longer imagine that someday I too, will thrive in such environments. I’m content to live right here, right now, taking each day as it comes, and not worrying about things beyond my control.
Got any good books to recommend in this genre? I’m always on the lookout for quality reading material.
Last week I gouged myself in the eye with the tip of an eye drop vial. You know the single-dose kind with the twist off top? You’re supposed to throw it away once you’ve used it. Or, if you’re me, you put it in the medicine cabinet because you can get another dose out of it before you trash it, but that’s neither here nor there.
It was morning, I was in my usual sleep-coma, and I groggily tilted back my head and went to put some drops in, and OWW! I couldn’t believe how bad it hurt. But I soldiered through, put some more drops in, and proceeded to put my contact lens in.
Everything was fine… for a while. Later in the day, I noticed my eye felt like it was burning. “Oh god, I have pinkeye,” was my first thought. I kept looking in the mirror but everything looked fine.
That night when I took out my lens, my eye hurt like it had been freshly poked. “Shit,” I thought, “I’m going to have to call the doctor tomorrow.”
I’d been through this before, although it had been a very long time. In the summer of 2003, I woke up one morning and I thought I had a cat hair in my eye. I rinsed and rinsed, held my eyelids open and looked at my eye for a long time but couldn’t find anything.
Back then I had to lay low for about a week while constantly applying lubricating eye drops, antibiotics and ointment to get it to heal. I really didn’t want to have to put my life on hold for a week this time, or have to wear an eyepatch, but I also knew that if I didn’t do something, I might really regret it. Plus, this time it was my ‘good’ eye that was scratched, and I did not want to risk damaging it.
I guess 18 years makes a difference, because this time, the doctor confirmed that I had indeed gouged myself, but she put a bandage contact lens in my eye to help it heal. I did still need to do the antibiotic drops and an anti-inflammatory drop, but I could forego lying in a dark room with cold compresses on my face.
Today I went back for a follow-up, and she took off the bandage lens. She said it’s healing up nicely but that it’s still delicate so I have to be careful not to poke myself in the eye again anytime soon… d’oh!
Here’s hoping I can keep it healing and not cause any further injury. I find it silly that after all the time I’ve worked with glass and always wear my safety glasses to protect my eyes, I go and stab myself with an eye drop vial.
It’s been a while since I’ve blogged, and that is (partly) because I have been focusing on learning the art of stained glass! If you follow me on Instagram or Facebook, you’ve seen plenty of my posts over the last 6 months or so involve glass in some way. Here’s the back story:
At the end of last summer, I was feeling like it was time for me to try something new. I get this urge from time to time, when things in my life are feeling stagnant, or I am feeling creatively stunted. It is what motivated me to take pottery lessons so long ago, to get my degree in landscape architecture (an expensive foray), to take the master gardener certification course, and to get involved with Toastmasters.
I’ve always had a thing for glass. Perhaps it’s not really glass itself, but light. Glass is a medium that changes appearance depending the light source, intensity, and movement. I guess what I really love is light itself. I love light.
Ahem, back to my story. So late summertime, I’m looking for my next creative adventure and it hits me – GLASS! It is one of those things I always wanted to try, and I’m at a time in my life where I can easily afford to take a class and buy supplies, so why not? I googled “glass studios” and found a place about 20 minutes from my home. I also found that a local art center was doing a one-night class to make fall leaves. I asked my dad to join me and we made our very first stained glass pieces.
Dad foiling his leaf pieces!
Our finished leaves.
The stained glass classes at the glass studio were offered in 6-week sessions. I wasn’t able to sign up for a session right away, so in the meantime I took a couple of the one-day classes they offered on Saturdays. I asked my friend Stacy to join me.
The first class was pretty minimal work. We had to select a piece of glass that would be slumped over a form in the kiln to create a vase. We could trim the edges of the piece however we liked. After we left, the studio owner would fire the piece for us, and we could pick up the vase the following week.
Although I had done some cutting to make the leaf mentioned above, I was still getting the hang of it. I found the glass cutters offered at the studio were a challenge for me to hold. I watched as the instructor held the cutter in his hand. His index finger extended down to the cutting head while the rest of his fingers gripped the handle. Well, that didn’t really work for me, since I was working with two less fingers.
Nevertheless, I persisted and was pretty happy with how my finished piece turned out. Unfortunately for Stacy, her piece broke when they attempted to drill through the bottom so she could use it as a lamp shade.
After that first class, I emailed the studio to ask if they had different cutter styles I could try out, since the pistol grip style was clunky and hard for me to control. It turned out they had a couple of options. The next time I went in, I tried a pencil-style one and one that had saddle-shaped handle. The saddle grip worked best for me, as it allowed me to grip close to the tip with my fingers and use the pressure from my palm to push the cutter.
I ended up buying a really cool cutter that has an adjustable grip handle. It has made cutting the glass so simple and fun!
Fused Wind Chimes
The next class we signed up for was to make wind chimes. We were given a wide array of fusable glass to choose from and allowed to go wild. Stacy went with an aquatic theme for hers, but I decided to make abstract leaves for mine.
Once again, we had to leave the items behind for the studio to put into the kiln, and then we could pick up our work the following week. I was really happy with how mine came out, although I think the stick I hung them on is a little too big, so I may re-hang it later.
As the holiday season approached, the studio offered fused ornament classes pretty much every weekend. By this time, Stacy and I had already started the stained glass course, but I figured the ornaments would make really unique Christmas gifts for the family.
Stained Glass Butterfly
The first night of the 6-week stained glass course, I had no idea what I wanted to make. I’ve never really been interested in the cookie-cutter stained glass designs you see in people’s front doors or in bars. I wanted my piece to be funky and artsy and different. The first night, I began sketching out this crazy spiral design that I’d been doodling in my notebook for weeks. It would look so cool, but as I drew it larger, I was intimidated by the complexity of it.
The following week was Thanksgiving, so there would be no class. Plus, Dave and I were going to Costa Rica, so I’d be missing the class after that as well. That bought me some time to think about it and come up with an idea. While in Costa Rica, we saw lots of blue morpho butterflies, which inspired me to do a butterfly pattern.
My first thought was to do a realistic rendering of the blue morpho, but as I searched online for stained glass butterfly patterns, I came across a drawing of a celtic knot butterfly, and I knew that was the one I had to do.
Little did I know, as I began that project, just how hard it was going to be to cut out the curvy shapes. I broke several pieces before the instructor informed me that they had a saw that I could use for the especially curvy parts.
Even with the saw, I left a lot of extra glass on my pieces, which meant that I had to spend a LOT of time using the grinder to get my pieces down to size. At first I found it very hard to hold onto the small pieces, and my hands were cramping up. I asked if they had something to hold the pieces with, and it turned out there was! Once I used that, it alleviated the strain on my hands and made for a more pleasant experience.
By week 3 of cutting and grinding, I was feeling somewhat downhearted about my project. I confess, I’m an instant-gratification kind of person, at least when it comes to learning new things or creating something. In my artistic experiences, I tend to prefer projects that can be completed in one sitting. I like the feeling of accomplishment that comes from finishing something. Of course I am aware that working on something over time can also be gratifying, but I was really getting tired of grinding the life out of my glass pieces.
It took me most of the 6-week course (actually 5, since I missed a week while I was in Costa Rica) for me to complete the butterfly. I did learn a lot through the process, mainly that I should cut much closer to my pattern lines so I wouldn’t need to spend hours grinding.
Once the butterfly was finished, I wanted to try my hand at a slightly larger piece. I had a couple of octopus drawings I’d done in the past that I thought would be cool to modify into a glass piece.
I redrew the design on a larger piece of paper, and then traced over that with tracing paper to create my new pattern. Originally I wanted my octopus to be bright orange with pink undersides like the drawing, but I couldn’t find a bright enough orange in the selection of glass at the studio. I settled for a piece of glass that reminded me of the inside of a seashell. It was mostly beige in color, with hints of purple and green and an overall iridescence to it, like abalone. For the underside I found a piece of glass that was swirled through with bright orange-red. And for the skirt, as I called it (I guess really it’s the armpits? ha ha), and the eyelids, I chose an iridescent white. For the water I just laid low and went with a clear cobalt blue.
By now I was much more comfortable cutting the glass, and did not have to spend nearly as much time grinding, which was a huge relief. Also, by this time the new year had rolled around and the studio had put fresh grinding bits on all their grinders so that also made the grinding process less annoying.
I’d come to grips with the fact that this was going to be a multi-week process, so I was feeling less angsty about the time it was taking to get my octopus put together. It ended up taking me about 10 weeks from start to finish. I made some more rookie mistakes in the process, but I am happy with how it came out!
Over the past few weeks I’ve been putting together a small glass studio of my own. I am keeping an open mind as to where it will take me. I have no shortage of ideas for future projects, and perhaps once I’m more confident with my skills I can start taking commissions. We’ll see!
Hi guys! I just did a new thing! I went live on Facebook to do a Q&A about EEC! There wasn’t a lot of Q’ing, so I mostly rambled on about life with EEC, but despite my internet connection cutting out a little bit, and my occasional “uhh” moments, I think it went pretty well!
Check it out!
I wish I could figure out how to change the preview so I don’t look like I just sucked a lemon.
I will definitely do more live videos in the future, so if you would like to hear me talk about something in particular, please let me know!
And don’t worry, I WILL blog again… with words and pictures… I promise. 🙂
My next toastmaster speech project is supposed to be a “touching speech,” It’s practicing how to convey emotion through storytelling. Instead of just saying “Billy felt sad because he wasn’t invited to Joey’s birthday party”, you’d tell the story of Billy watching his friends pass by on their way to Joey’s party and wondering why he wasn’t invited.
I’ve been trying to decide what to do for my touching speech. I thought about telling my Color Me story, about the time the girl at school rudely suggested I use markers to give my hair some color. But then I had a crazy idea. Something that would really push me beyond my comfort zone in a big way.
I could tell the story of that day at the water park when that boy made a scene over my alien feet. I could talk about how ever since then, I have gone to great lengths to hide my feet – not only from strangers, but even from most acquaintances.
The kicker (see what I did there?) of it all would be that I would either walk up to the lectern in my bare feet, or I would wear shoes I could easily slip off to reveal my feet as I told the story.
But I’m not sure…. is it cheating to use my body as a prop? Is it overly dramatic? Would I be able to do it without peeing my pants in front of everyone? I practically hyperventilate at the thought of it, yet that only makes me want to do it more.
The 2017 NFED Family Conference has already come and gone – in a flash, it seems. This year it was held in Falls Church, VA, which is right outside of our nation’s capital – Washington DC. The day before conference was Advocacy Day, and many NFED families went to Capitol Hill to speak with their state representatives about mandating that dental treatment be covered under health insurance.
I won’t recap every second of the conference – just point out some of the highlights.
Highlight 1: Reuniting with old friends!
Now that I’ve been going to conferences for 6 years straight (except for last year, which I skipped), it’s crazy cool how many people I actually know! Of course there’s my adult EEC crew, Norma’s Canadian entourage, my mini-me – Ally, and her family, and all the other adult parents of EEC kids (most of whom are not much older than me).
There’s also a lot of youngsters who I met when they were just little tykes, and who are now getting so big! Julie, who once cried when I tried to hold her, now sought me out to say hello! I reunited with my two Sams, although I only have a picture of one of them. The boys I met at my first conference are all teens now and towering over me.
Of course the are plenty of other adults I enjoy reuniting with – I don’t want to try and list everyone here for fear of missing anyone. But you know who you are!
Highlight 2: Meeting new friends!
I was excited to discover a mother/daughter team from Connecticut at the conference. Not only that, but the daughter has EEC! Doubly exciting, since we hardly ever get New Englanders, much less Nutmeggers at the conferences. I will definitely be getting in touch with them so we can get together locally.
Another new EEC person was 9-month old EJ, who was there with his mom Iris. Iris introduced herself to us by announcing that she had Facebook stalked all of us. If she hadn’t been a mom of a young affected boy, this might have been super creepy, but we all laughed and then fought over who would get to hold EJ next.
I’ll let the photos do the rest of the talking – and let me say a quick shout-out to Iris, Caitlin, Terri and Suzanne for sending me most of these pics. I think only about 4 of them were mine to begin with. And thank you Bridget for the picture of Sam and I. 🙂
My sweet little friend Julia
Some of the EEC crew
A collection of EEC feet
More EEC feet!
Hanging out in the hotel lobby!
A more composed lobby shot.
Jack packing up his bike to ship back to Oregon!
All the EEC people at conference.
Norma and EJ
Me with some of the next generation
Terri, EJ and Suzanne
Nollan and EJ bonding.
Nollan, EJ and Iris
Posing with our past selves.
Me and Suzanne!
Caitlin, Suzanne, me and Terri
Jack, me, Suzanne, Norma, Terri and Marc
The Brown family
Tyler, Caitlin, Will and Suzanne
EJ and Iris
Iris, Marc, me and EJ
Me and Sam!
Everyone huddling out of the rain at the Rally for Ally
After the conference was the Rally for Ally. I had hoped to get to chat with a lot of people there who I hadn’t gotten the chance to talk to at the conference. However, about halfway through, it started torrentially downpouring, and I ended up heading back to the hotel with the MacDonald clan. We got dinner in the hotel restaurant and then it was time for me to catch my plane!
Next year the conference is going to be in Oregon! I’m already trying to figure out how much time I can get off from work so that I can make an extended trip out of it.
In first and second grade, my teacher encouraged us to make books so we could practice our writing skills. At the time I was very impressed with myself because I wrote a lot of books. In looking through these “books”, 30 years later, I am amused by the fact that very few of them are actually finished. I would start off very excitedly and a few pages in, I would literally drop my pencil and move on to something else. The foreshadowing was unrecognized at the time, but looking back, it is quite telling.
Currently I’m working on scanning all my childhood paraphernalia, as it is starting to disintegrate into dust (construction paper is not meant to last). God knows I’ll probably get 1/3 of the way through and lose interest – in that regard, little has changed since second grade.
I do intend to share some of my early childhood creations, starting with this gem:
If I Had 3 Wishes
If there’s one thing I wish Mrs. Bush would have taught us, it would have been storyboarding. Maybe I was just out that day. But to this day I struggle to plan things out – preferring instead to jump in and get started, only to find out that I’ve run out of paper (or time, or budget) before I could finish my story.
I’m sitting outside on this lovely evening and I’ve been itching to blog for days now. There is a lot on my mind and I want to write about these things, but they are too hard right now. So instead, I will write about something that makes me happy.
This time of year always awakens excitement in me. Perhaps this is a remnant of my schoolgirl days, when the arrival of warm weather, insects chirping outside the open windows, and being able to wear shorts again were signals that school was almost over for the year.
It’s no secret that I was not a big fan of school. Just like it’s no secret that I am not a big fan of work. Hah! Of course I always enjoyed learning and doing interesting things, but school, like work, wasn’t always fun and games.
From Memorial Day onward, school got fun. It was like we could all see the light at the end of the tunnel. Countdowns of remaining school days were chalked out on the board. Teachers would conduct classes with the lights off, to keep the room cooler (did it though?) Rules could be bent a little. The excitement was palpable.
Summer was hands down my favorite time of year as a kid. Waking up in the full light of day to the scent of freshly cut grass and moseying on down to the kitchen for a bowl of cereal was soon followed by asking Mom if I could go in the pool. Usually pool activities were reserved for after lunch, when it was hotter and after Mom had been able to get some things done around the house, but it never hurt to ask. I loved that pool so much. While on land I often felt clunky and awkward, once I was in the water I felt as graceful as a dolphin. Mind you, I may have looked awkward to anyone watching, but I was having fun.
Sometimes we would take trips down to the shore. My great-grandparents had a trailer down in Somers Point, and we would stay there for a couple of days at a time through the summer. Days would be spent alternately choking down seawater as I attempted to play in the waves and getting burnt to a crisp on the beach, while evenings were spent chowing down steak sandwiches or pizza and then going on rides along the boardwalk in Ocean City. As a kid, I thought Ocean City was the most magical place ever.
As you can see, a couple of day of warm weather and I’m easily transported back to the enthusiasm I had for summer as a young kid. I only wish I could have the amount of time off that I did back then! Maybe it’s time to reconsider my career path…
Speaking of which, tomorrow I’m off to Chicago, but I will be leaving exactly 24 hours later. Talk about a whirlwind trip!
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.
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.
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!
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.
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?