What super power would you have? Why, invisibility, of course! Sure it would be nice to fly, or shoot lasers out of my eyes, but to be invisible . . . now that would be really cool.
One spring afternoon in Music class, we were learning a song about the rain. On the handout there was a drawing of a boy walking through the rain with an umbrella. As I often did, I doodled on the drawing, beginning with shading his rain boots. Absent-mindedly, I continued embellishing the drawing until I came up with an amazing idea. Imagine an umbrella with curtain-like sides, so you could be completely hidden from view while using it! I could picture myself taking a walk through the park, strolling along in my own private room while passersby were completely uninterested in looking at me.
That afternoon I leapt off the school bus and ran to the house, eager to build the prototype. In the mudroom, I located the big Mary Poppins-style umbrella, grabbed a roll of duct tape and the rag box – which had some old bed sheets in it. I brought all the supplies out into the yard and painstakingly taped the mis-matched, paint-spattered sheets around the umbrella. I taped each sheet together to ensure that there would be no gaps through which I could be seen. My friend Chrissy came over to see what I was up to, determined I was nuts, and went home to watch Saved By the Bell.
About an hour later, my umbrella creation was ready for a test run. I climbed under the sheets and hoisted the heavy contraption up off the ground. I’d failed to consider how I was going to navigate under this thing. After a few cautious steps around the yard, it was determined that an adjustment was needed. A section of sheet was removed and replaced with an opened-up black trash bag. The bag was transparent enough for me to see through, but not so transparent that anyone would be able to see me inside it. Brilliant! By then, it was time for dinner, so I closed the umbrella-contraption and tossed it into the mudroom, feeling accomplished.
A few weeks later, Joanna was visiting for the weekend. As usual, we spent much of the time lying around complaining about how incredibly bored we were. Then I remembered the umbrella. We decided to take it out for a walk around the park. It was big enough for the two of us to walk side-by-side in it, but it was awkward trying to coordinate our pace and not tread on the sheets which billowed around us. We made it across the parking lot to a bench near the tennis courts, where we sat down, still inside the umbrella.
Two teenage boys had just finished up a tennis game. They had probably seen us approaching the bench, like an enormous drunken jellyfish. They exited the tennis court and began walking towards us, their curiosity piqued. Joanna elbowed me in the ribs. “They’re coming over here!” she gasped, “let’s get out of here!” I grabbed her arm, “No! Sit here – let’s see what happens!” For some reason, I didn’t expect them to actually come over to us. But they did. One of them tapped the top of the umbrella with his tennis racket. “Hello? What is this?” he laughed. We sat, paralyzed with a mix of excitement and fear. The other boy pulled back one of the sheets and peeked in. “There’s a couple of chicks in there!” he exclaimed. The other pushed him aside to have a look. “Naw, they’re just kids.”
As soon as they turned and began walking away, we leaped up from the bench and began running back to the house as hard as we could. If walking in a coordinated fashion had been difficult, running was proving to be impossible. The heavy umbrella wobbled uncontrollably in our hands. Joanna tripped on one of the sheets, ripping it from the umbrella as she fell. I kept running, still holding onto the umbrella as the remaining sheets flowed out behind me like a horse’s tail. Joanna kicked her legs free of the sheet that had tripped her and desperately continued running. Breathless, we reached the safety of the yard, where we collapsed into a screaming, laughing heap of sheets and mangled umbrella.
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.
Mom and I go way back. As her firstborn, I got to break her in to the whole motherhood thing. This arrangement worked out pretty well for me. (I’m just a little bit spoiled.) For her, I may have raised her blood pressure a bit but overall I think what I put her through may have made raising three additional kids a piece of cake.
Mom was always really good at taking care of me when I was not feeling well. She’d set me up on the sofa with pillows and blankets, make sure I had something to drink and that I took my medicine on time. If I was able to eat, she’d make me soup or spaghetti (my favorite), cut into tiny pieces so I wouldn’t have to chew much. She’d clean up my barf and comfort me as I cried. She’d say things like, “I wish I could take the pain away from you. I wish I could have the surgery instead of you.” As a child I couldn’t understand why she’d want such a thing, but if it had really been an option, I would have taken her up on it. It wasn’t until I was an adult and I got to be the one wringing my hands in the waiting room that I understood how she felt.
Of course, I have happier memories of my early life with Mom. She shared her love of reading with me, which is a gift that will last a lifetime. She also shared her passion for the outdoors – the smell of the woods in autumn, the sight of a hawk in a tree, and a heart-swelling appreciation for the ever-changing beauty of an expanse of sky. She was always a creative thinker and came up with so many fun things for us to do. We had a pebble hunt, like Pooh and Piglet. I was encouraged to write my own stories and illustrate them. When I wanted to learn to play the piano, she drove me to lessons and somehow did not lose her mind listening to hundreds of faltering renditions of ‘Fur Elise’ and ‘Hey Jude’.
Mom’s lifelong pursuit of knowledge, of thinking for herself and reinventing herself when necessary, has been the most inspirational to me. She is most definitely a self-made woman and I continue to learn from her. Her life has had many ups and downs and she has worked her way through many difficult situations. When I look back to where we were even just 5 years ago I am amazed at how much has changed. Looking back 15 or 20 years is even more astounding.
So thank you, Mom, for all you’ve done for me and our family, and above all for being a kind person whom I am proud to call my mother.
Water. How I have always loved water. Whether it be in a bath tub or a swimming pool, I want to be in it.
Swimming allowed me to be weightless and graceful, while on land I was clumsy and awkward. Being in the pool was like being in another world – one where I never got too hot, and when I felt tired I could just float along and listen to the gentle waves lapping against the edges.
When I was a young lass of 3 years old, my mother decided it would be wise for this little fish to take swimming lessons. She signed me up for a a program of gymnastics, crafts and swimming at the local YMCA. She also thought it would be a good opportunity for me to make friends and prepare me for kindergarten.
On the first day of swimming class, my mother helped me change in the locker room. Neither one of us had any idea that we were about to meet someone special. I walked out into the warm, humid pool area and lined up with the other children by the edge of the pool. My mom sat in an observation area with the other mothers as the instructor introduced herself. Her name was Suzanne.
Suzanne had hands and feet like mine.
The significance of this was lost on me at the time. I wasn’t aware how rare my condition was or how unusual it was to run into another person with EEC. I just thought it was neat that this woman looked like me! My mother, however, was overcome with emotion. She had never met anyone else with EEC and here, just by chance, was Suzanne.
Long after my swimming lessons were over, my mom kept in touch with Suzanne. She must have asked her so many questions and Suzanne patiently answered them. As I grew up, Suzanne was always referenced whenever I had surgery or a health situation to deal with. “Suzanne went through this”, my mom would say. “Suzanne said…” my mom would start off, when I wondered about how something was going to go. Over the years we lost touch with Suzanne, and her presence fell to the back of my mind.
It wasn’t until I got involved with the NFED that I started thinking of her again. During the planning stages of the 2012 family conference, I was given a list of people who were registered for that year. Scanning the list, I saw Suzanne’s name and address. I wondered if it was really her. I couldn’t even remember what she looked like.
Sure enough, she and her kids were at the conference. The first day in the EEC syndrome specific group, we sat in a circle and introduced ourselves. I knew who she was even before she said her name. After the session ended, I caught up with her in the hall. “Suzanne! Do you remember me?” I asked.
Of course she remembered me. As I’ve come to find out, meeting others with EEC is not something anyone easily forgets. I’ve also realized just how lucky I was to have met Suzanne when I was little. Before the internet, there was no easy way to find others with EEC. Meeting her and knowing that she had been down the path ahead of me was a great source of strength and encouragement for me. I’ve met adults who didn’t know there were others with their condition until they were in their 40’s and 50’s! It must be a lonely feeling to spend most of your life thinking you’re the only one.
I also got to meet Suzanne’s son at the conference. Isn’t he cute?
I’m not really sure how to conclude this post except to say that I thank my lucky stars that I had Suzanne to look up to while I was growing up. I hope I can be the same for other little girls and boys out there with EEC. While sometimes my “EEC issues” can get old, I wouldn’t trade it for the world. I’ve met so many amazing people because of it. I am continually inspired and encouraged by the strength and positive attitudes of my EEC friends and the people that love them.
For about a week now, I’ve been 85% deaf (as opposed to my usual 50%). I seem to have acquired an infection or a swelling or some thing which has caused my good ear to feel clogged and useless. I’ve been walking around feeling like I’ve just jumped into a swimming pool and the world is muffled.
My nerves are a little frazzled lately, in part due to this ear thing. If you’ve ever gotten water in your ears, or had your ears pop in an airplane or something, you know how annoying it is when they don’t feel (and hear) right. You never think about how often people speak in hushed tones at work (or should I say gossip?) until you can’t hear them. Sitting at my desk and watching a co-worker mouthing the latest gripes and having no idea what she’s saying makes for some awkward moments. Worse yet is not being able to clearly hear my boss giving direction for a project.
Ok, who am I kidding, this happens even when my good ear IS working.
So you’re probably wondering what the problem is. Well, ear problems go hand in hand with cleft lip and palate, thanks to improper Eustachian tube function. Since infancy I had frequent ear infections. Every time I’d have surgery on my mouth, they would pop some tubes in my ears in an attempt to alleviate the ear issues. The tubes would always work their way out a short time later and the infections would return. Over time, my ear drums became heavily scarred from all the tubes and all the infections and subsequent ear drum ruptures.
When I was 9 years old, I had surgery on my left ear. I had been suffering from a chronic ear infection for years before that. I’m sure there was pain and hearing difficulty during those years but all I remember was the frequent dosing of antibiotics, or “bubble-gum medicine” as we called it, because it was bright pink and candy-flavored. So I was 9 years old and I had this surgery which was supposed to be an outpatient procedure. I think it was an exploratory surgery because the doctor we were going to couldn’t figure out what my problem was. So when they went in, they discovered that my inner ear was full of cholesteatoma, which as I was made to understand at the time, is basically a tumor made of skin. They opened up my ear from behind and removed all the cholesteatoma, along with bone and parts of my inner ear.
I woke up from the surgery with an incredibly sore neck. My head was wrapped in what felt like an enormous, heavy bandage. My parents were really upset and they told me then that the hearing in my left ear was gone. I don’t recall being sad about it. Considering the amount of cholesteatoma and the extent of the infection I had at the time, I probably hadn’t been able to hear well from that ear anyway.
A few days later we returned to the doctor so he could remove the bandage and take a look at my ear. I sat on my mom’s lap as he began unwrapping. As he pulled away the last bit of gauze, a gush of smelly fluid came out from behind my ear. Mom exclaimed concerns about fainting and the doctor exclaimed too – something along the lines of “Oh crap, that’s not good.” The incision had become infected. Back on antibiotics I went, and home I went with a hole in my head. It had to remain open until the infection cleared up.
Part of the infection-healing process was that my dad had to apply antibiotic ointment to the incision every day. My mom couldn’t bring herself to do it (and I don’t blame her). It was a hideous experience. When he would get home from work in the late afternoons, I would lie face down on the bed while he took a Q-tip and gently applied the antibiotics to the back of my ear. I hated every second of it and just thinking about it now makes me queasy.
Ultimately that infection healed and the wound was closed up. I missed the first week of 4th grade and, as you can see in the photo above, once I did return to school I still had the cotton ball and ointment going on for a while. Plus I was exhausted.
Sadly, that was not the end of the ear problems. The following summer I had to spend a week in the hospital for an intravenous antibiotic treatment to clear up further ear infection. By then we’d switched to another ear doctor because my parents were horrified that the previous one had missed the signs of cholesteatoma until it was nearly too late. For several years I had regular visits to the ENT to have my ear “suctioned”, which as you can imagine is not the most fun process. After a while, it was determined that my ear was okay and I could stop using ear drops and eventually I stopped visiting the ENT.
For the most part my ears were okay throughout my teens and 20’s. The occasional ear infection or wax buildup in my “good” ear would sent me to a doctor for treatment. It wasn’t until my 30’s that I finally decided to find a good ear doctor and find out what was going on in both ears.
Stay tuned for Part 2 – my adventures in ENT issues as an adult.
When I was 10 years old I was given this little pink diary for Christmas. I had no idea then just how significant a role this little book (and the dozens more that would follow) would play in my life. As a 10-year-old, I wasn’t even really sure how to keep a diary. All the books I’d read about diaries usually involved extreme situations and I was no Anne Frank. Often times I would just write “It’s late, I gotta go!” as I climbed in bed for the night. But it got me into the habit of writing and before long, I was spilling my guts onto the pages. Through the years I relied on my journal as a place where I could vent my frustrations, share my ideas and express myself without worrying about anyone else’s reaction.
My journals are one of my treasured possessions because they are like little time-machines that transport me to different moments in my life. Some of the things I’ve written bring back happy memories, and other things fill me with angst. Sometimes it even seems like I’m reading the thoughts of a stranger. It makes me realize how much people can change as they go through life, and how various experiences can alter your attitude or opinion about things.
I plan on sharing some excerpts from my journals because I think they can give a more accurate picture of how I was feeling or managing things at the time. Like this one, where I was kinda freaking out about my upcoming bone graft surgery.
Tuesday, January 29th 1991
A week from today I will be in the hospital. By now (10:07pm) I should be out of the operation room maby even out of pain! I could only dream! Im sort of looking forward to it but I’m worried about the pain mostly. Do you think I’m crazy or not because I am looking forward to it? Mommy bought a bunch of valentines decorations for me to make while recovering. I hope I will be on the seventh floor with the older kids but on the sixth floor I’ll only have to stay 2 days. If I go on the 7th floor I’ll have to stay longer. I might think about staying on the 7th floor for 2 days or more but I am hoping to come home early so I will get to feel better with my family.
I read this now and find it sort of funny how I was obsessing over which floor I was going to be on. It wasn’t like I had a choice. As if they’d wake me up after the operation and say “Hey, you want to be on the 6th floor with the babies or the 7th floor with the cool kids?” According to my diary, I got to come home after 2 days. I didn’t write anything about what floor I was on (it’s unlikely I was even aware at the time anyway). Because my mom got me supplies (paper doilies, red and pink paper, stickers and metallic heart confetti, to be specific) to make Valentines while I rested, I’ve since associated Valentine’s day with that sluggish post-surgery recovery feeling. How romantic.
I’ll leave you with a more typical diary entry from my 11-year-old self:
My first plastic surgeon was Dr. Hulnick at St. Christopher’s Hospital for Children. I had 5 surgeries with him, the first when I was barely 3 months old and the last when I was 6. I don’t remember what he looked like, but I do remember him being a big part of my early life. I was just shy of 9 years old when he died. My mom wept and wondered out loud what were we going we do? I had no idea at the time – in fact, I have only recently realized – just what amazing work Dr. Hulnick did. I am grateful that he was my doctor and did such beautiful work on my lip and palate repairs.
While doing research for this blog, I came across his obituary, which I’ve posted below. My heart swells to read about what a kind and caring man he was, and I know I was fortunate to have him work on me.
Stuart J. Hulnick, 50, director and founder of the Burn Center of St. Christopher’s Hospital for Children and chief of its plastic-surgery section, died of leukemia Wednesday at his home in Lafayette Hill.
A pediatric burn-care specialist and plastic surgeon, Dr. Hulnick became nationally known for his writings on reconstructive microsurgery, burn care and treatment of children born with cleft palates.
Among his colleagues in Philadelphia, he developed a reputation as a tireless surgeon who worked long hours because of his commitment to caring for suffering children.
“He could have made a fortune as a cosmetic surgeon, but went ahead and did burns, the most difficult work,” said Myles G. Turtz, chief executive officer of the corporation that owns St. Christopher’s.
Dr. Hulnick’s friends remembered him as a man who enjoyed simple pleasures in life and took great pride in his wife and two children.
Born in Staten Island, N.Y., Dr. Hulnick studied American literature at Princeton University before entering the University of Rochester Medical School. He interrupted his medical residency at Strong Memorial Hospital there to serve in the Air Force from 1965 to 1967. He then returned to Rochester, where he was a senior resident and later the chief surgical resident at Genesee Hospital.
He came to Temple University Health Sciences Center in 1970 and spent two years there as a surgical resident before joining the medical staff at St. Christopher’s. In 1978, he became chief of plastic surgery and he founded the burn center – the only such children’s unit between Washington and Boston.
Yesterday, the hospital’s executive director, Calvin Bland, said the burn center would be named after Dr. Hulnick.
For more than a decade he served on St. Christopher’s board of managers and on the board of trustees of the Burn Foundation of the Delaware Valley. He remained in those positions until his death.
A member of the American Society of Plastic and Reconstructive Surgeons, Dr. Hulnick taught plastic surgery at Temple University Health Sciences Center and was on the medical staff of Chestnut Hill Hospital.
“I’ve never seen anyone love kids, and love kids who have had the horror and devastation of burns, as Stu Hulnick did,” said William H. Weintraub, who was recruited by Dr. Hulnick more than 10 years ago as the hospital’s chief of surgery.
“He had an unbelievable amount of commitment to children who had suffered the disfigurement of burns. I’m not sure he’s replaceable.”
He was “a straight shooter, a gifted surgeon and a brilliant guy,” said Turtz, who heads the nonprofit corporation that owns St. Christopher’s and two other hospitals.
Burn treatment for children, Turtz said, “is probably the most difficult job you can do, requiring extraordinary care and technique and constant attention.”
“He was a tremendous amount of fun, and he also had the capacity to be very silly,” said Diane Williams, who is director of nursing at Valley Forge Medical Center and a longtime friend of the Hulnick family.
Noting that a memorial service has been scheduled for a dining room at St. Christopher’s, Williams said, “He loved food and he disliked pretension, so it’s appropriate that a memorial service be held for him in the hospital cafeteria. He would love that.”
In addition to his work with burn victims, Dr. Hulnick ran a unit for children who had been born with cleft lips and palates. The clinic was staffed with oral surgeons and speech therapists.
Dr. Hulnick’s third major involvement was as a plastic surgeon for children who were trauma victims. St. Christopher’s has the largest trauma unit for children in the region.
“The kids would start out disfigured and end up beautiful by the time he was finished,” said Weintraub.
Dr. Hulnick excelled in his hobbies as well – needlepoint, gardening, cooking, making furniture by hand, and listening to classical music and opera.
Survivors include his wife, Virginia Cole Hulnick; two children, Lauren and Adam; a brother, and his mother, Martha.
Friends and family may attend a memorial service at 2 p.m. Wednesday in the cafeteria of St. Christopher Hospital’s Morris Pavilion, 2600 N. Lawrence St. Interment will be private.
This blog has existed for many years in my mind’s eye. I have been putting it off for one reason or another, but the biggest reason is that I am hesitant to open myself up to criticism and judgement when it comes to something so personal. So bear with me as I slowly peel back my layers and release these thoughts and feelings I’ve been holding onto for years.
Growing up “different” isn’t easy for anyone, of course. It’s a basic human need to feel accepted and part of a group. When you start out your social life being an outsider, you quickly learn how to change yourself and to hide the qualities that make you different. For me, since my appearance was so unique among my peers, one of the ways I adapted at school was to keep as quiet and unobtrusive as possible.
It’s hard to be a wallflower when your very appearance makes you stand out in a crowd, but in every other aspect, I tried to fade into the background as much as humanly possible. This worked as far as keeping bullies and meanies at bay – after all, what kind of jerk goes out of their way to pick on the girl who always has her nose in a book and never makes eye contact with anyone? (Ok, some jerks DID bully me, but quickly tired of it since they got no reaction from me.)
The downside of always keeping my nose in a book and my head in the clouds was that I didn’t enjoy school much, or make many friends (I must give a shout-out to the kind souls like Emilee, Chrissie, Jessica, and Marie, to name a few, who reached out and included me.) I was also fortunate to have several friends outside of school, especially my two best friends Chrissy and Joanna, without whom I can not imagine my childhood days.
Now, 20+ years after my school days, I have grown more confident, more outspoken and less concerned with “fitting in” and being “normal.” After all, they say normal is boring. Despite this, I still have days of wishing I could just hide under the covers and not have to go out in the big scary world. I am still somewhat socially awkward, though I now embrace this about myself. It’s me, socially awkward girl! I’ve overcome a lot of obstacles, but there continue to be challenges ahead. I see a bright future for myself and know that I can continue to work through my “issues” and hopefully help others work through theirs.