Category Archives: Inspiration

Speak the Truth, Even if Your Voice Shakes


The following TED talk resonates with me in so many ways; some of which I will explain below. In the video, Ash Beckham talks about the difficulty of coming out of the closet.  When you hear ‘coming out’,  you may think it only applies to gay people, but there are many kinds of closets and many kinds of ‘coming out’ moments. As she says, all a closet is is a hard conversation.

When you keep the truth about yourself a secret, you are essentially holding a grenade.

Writing my story here is a way to help me continue coming out of a closet of my own, and maybe inspire you to come out of yours. While in some ways my EEC is obvious – anyone with eyes in their head can see that I have scars and physical imperfections – in many ways I have spent my life trying to conceal this uniqueness from others. This was especially true throughout my school days, when I would rather have died than try to explain my condition to my classmates. I was ashamed of being different and wanted nothing more than to look ‘normal’ so that people would get to know ME instead of judging me on my appearance. Even as an adult, I sometimes found it difficult to go to new places because I was certain that people were staring at me and judging me the whole time.

It wasn’t until I was in my mid-20’s that I began to expand my circle of friends, and in turn, the scope of my social awareness. One summer evening I was at a cookout hosted by some lesbian friends. I looked around at the group and began thinking about how they had all made decisions to ‘come out’ with their identities. They weren’t ashamed of being different, and they didn’t seem concerned with how people would perceive them. Instead, they knew who they were and how they wanted to live and they went for it. They didn’t hide or pretend to be straight. Some of them weren’t even concerned with whether or not they looked female or male. In that moment I made the correlation to my own identity and how I had chosen to express myself. I knew that I wanted to be more “out” about myself and stop worrying so much about what other people would think. I wanted to be confident in myself the way these women were.

Of course, there is some distance between thinking about doing something and actually doing it. Plus, it’s not like coming out about a health issue is as edgy and cool as saying you’re a lesbian. What I really had in mind was to be able to look someone in the eye and answer their questions without blushing or stuttering and feeling like an undesirable. I wanted to change my attitude from “I know I’m weird. Sorry if it’s freaking you out. I’ll leave now” to “Yes, this is who I am. If you don’t like it, it’s your problem, not mine. I have just as much right to be here as you do.”

In the summer of 2011, several years after I’d had my lesbian-inspired epiphany, I found myself at the NFED Family Conference in St. Louis. I wrote about that experience here. Attending the Conference encouraged me to come out of my shell even further. It was a reminder that there are other people out in the world who are just like me. Other people who have successful careers and families and happy lives. They weren’t hiding their ectodermal dysplasia, but instead were living with it and dealing with it, not letting it hold them back.

Throughout this time, there were a series of experiences and people who inspired me to continue to open up and accept myself, flaws and all. It’s not easy to always be open and confident, but like anything else, the more you keep trying to do it, the easier it gets. I still feel like I have a way to go, and I expect that it might be a lifelong challenge for me. Fortunately I have many inspirational and supportive people in my life, and talking about it definitely helps. Talking to people always puts your own challenges in perspective.

As Ash states in her talk;

Hard is not relative. Hard is hard. We all have hard.

Steps to come out of your closet, or to have a hard conversation:

#1 Be Authentic

#2 Be Direct

#3 Be Unapologetic – Never apologize for speaking the truth

The only story that matters is the one you want to write.

Happy Birthday to my Mommy


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Mom’s Birthday 2014

Today is my Mom’s birthday.

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.

Coming at ya from 1982.
Coming at ya from 1982.

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.oh beautiful for spacious skies

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’.piano-kid-playing-pic

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.

Thoughts on Bullying, Part 1.


Every Friday morning, NPR airs a short segment called Story Corps. I often catch it on my way to work. Last week, it was a story told by a father whose 14-year-old son committed suicide after being bullied relentlessly. In recent years, there have been a lot of stories of kids killing themselves after being bullied. My heart goes out to these kids and their parents, of course.  But this past week’s story got me thinking about bullies and the effect their victim’s suicide has on them.  Does it make them stop bullying? Do they even realize how their actions have so drastically affected someone else’s life?  Do they even care?

"I just don't fit in!"
“I just don’t fit in!”

When I was a kid, there were bullies at my school whom I avoided as much as I could. Even now, my stomach sinks to think of how insecure and helpless I felt in their presence.  At the time, I didn’t give much thought as to why they would be treating me the way they did.  I took the burden of blame on myself.  I was an unusual looking kid with a funny little voice, so I accepted that they had reasons to make fun of me.  Of course I wished they would find some other way to pass the time, but I just assumed they were wholly mean and bad kids.

Now that I’m an adult I am aware that oftentimes bullies are bullies because they’ve learned this behavior as a way of raising their social rank, to make up for their own shortcomings and insecurities.  They bully to establish dominance and control. They’ve often been bullied themselves. So I wonder, if a bully’s victim commits suicide, does the bully feel vindicated because it proves (to them) that the person was weak and worthless? Or do they suddenly realize that the kid they were always picking on was actually a whole person, with feelings and potential, and had a family that loved him?

I tried being a bully once. At recess one day I noticed that a chubby Italian boy was wearing a football jersey with the name Meatball across the back instead of his last name. I poked him and jeered “Ha-ha, it says Meatball because you’re fat!” totally failing to grasp that that was the joke. He raised his eyebrows before rolling his eyes and walking away. While I’d initially felt an adrenaline rush for having stepped out of my comfort zone, I was left feeling like a jerk and definitely did not gain any power from the interaction.

Whenever I hear of a bullying-induced suicide, I think back to my own experiences and how, no matter how much crap was dealt, I never felt compelled to kill myself. I certainly did have days of feeling worthless and despicable. There were a lot of times where I would feign illness in order to stay home from school so I wouldn’t have to deal with another day of being told I was hideous, freakish and unlikable. I was fortunate to have a stable home life and siblings who loved me for who I was and who never looked at me with disgust because of my physical appearance. I was also lucky to have friends outside of school who were able to see past my outer appearance and who appreciated my wild imagination and sense of humor.  And while I was at school, my wild imagination kept me company even in the worst of times.

So if you are reading this and you are a victim of bullying, please hang in there. You can grow up to be so much stronger than your peers because you have put up with this. Don’t let other people determine your worth. Remember your strengths and keep pushing ahead with them, whether it be academics or art or music or sports. Do what makes you happy, and be yourself. There is so much more to life than what happens in school. It’s hard to realize it now, when it seems all that matters is who you sit with at lunch, or that your clothes have the right label. It may seem like an eternity before you will be out of school, but one day it will come and life will open up to you. In the real world there is a place for everyone, and thanks to the internet, you can find people all over the world who are “just like you” in one way or another. 

Stalling


Fear not, dear blog-readers.  I have not abandoned you.  I’ve been otherwise occupied, and admittedly I am stalling a little.  There are things I want to write about that are not really EEC-related and I’m having an internal debate about whether it’s a good idea to expand the scope of this blog to just being about Me, Myself, and I in all aspects, rather than always trying to tie things into “because I have EEC, this affects me a certain way”.

It’s difficult to decide what to share online and what to keep to myself.  By nature I would just share everything and be open and free.  But out of respect for the people in my personal life, that isn’t really an option. Not to mention that I failed at keeping this blog anonymous when I linked it to my Google+ page and now everyone can figure out my name within two seconds.

One reason I’ve been less active online lately is that I am in the midst of switching positions at work.  I’m really excited about the transition but don’t feel at liberty to talk about it in much detail yet.  More significantly, something that has kept me silent lately is that my beloved Gram died two days after Christmas.  I’ve been writing a ton in my personal journal (old school pen & paper, that is) but I am still not ready to really share much online.

Last visit with Gram
Visit with Gram – December 2013

I was lucky to be able to visit Gram one last time just a few weeks before she died.  She was very tired and weak at that point.  She didn’t want to eat anything, and spent much of the visit dozing off in the chair. My cousins (the two other women in the photo above) were with her again in the days right before she died.  I’m glad that they were with her, and hope that gave Gram some comfort in her last hours.

So writing projects ahead include sharing how Gram was a formative figure in my life and how I will remember her.  I also keep thinking about self esteem and self image, and really want to write a lot about that.  So please, check back again soon.  Getting this blog really going is one of my goals for the year.

Namaste

Keeping Things In Perspective


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The first time I saw the night sky in it’s full glory, I could hardly believe my eyes. Stars sparkled in all colors. The milky way rippled across the dark like a shimmering ribbon. Shooting stars fizzled above the horizon. As my eyes adjusted, I saw that there were more stars than I could ever have imagined, stars beyond stars, multiplied by millions. To infinity and beyond, for sure. My whole family was mesmerized by the night sky.  Every evening we’d pile onto the deck, wrapped in sweatshirts and huddled in blankets against the cool night air, while fireflies blinked and mysterious creatures chirped and chattered in the dark shadows of the trees. For hours we would lie there looking up at the sky, counting satellites, learning the constellations and waxing contemplative.

That was the summer I turned 15. My family spent 3 weeks in Vermont, house-sitting for family friends. Until then, I’d never really been outside the suburbs of some major metropolitan area. I’d never seen the sky without the pale haze of light pollution and a constant flow of airplane traffic. Despite that, I’d always had a healthy appreciation for nature, having spent many childhood days exploring in the woods and along the creek that ran behind the park next door. Early on, my parents instilled in me a love of hiking and discovering. We’d take day trips to nearby state parks and to the Poconos, where we climbed endless trails and turned over countless stones looking for fossils. But it wasn’t until those summer nights in Vermont that I felt the jaw-dropping sense of awe that comes with realizing just how vast and magnificent the Universe is.

Whenever I find myself going through a rough time, or needing some reassurance that my life is not spiraling uncontrollably into disrepair, I remember how it felt to be looking up at that night sky, staring back at the Universe. Looking out into the cosmic depths really puts life in perspective. I am so very small and insignificant. The Universe is so vast and mysterious and I am only a teeny tiny part of it all. Suddenly, worrying about how my nose looks in profile seems ridiculous, not to mention the gazillion other silly little things that I worry about every day. In the grand scheme of things, my problems are fleeting and trivial.

For me, being reminded of my unimportance is a good thing. I don’t know why but I have always felt like I am supposed to be doing something outstanding with my life. Maybe because I’ve often been told that I’m special and I’ve been so brave to go through the various medical adventures (though mine are really not that scary compared to some people’s). Throughout my life I’ve often felt consumed with trying to make a good impression and getting people to like me. Even now, I sometimes spent too much time worrying about what other people think. To me, it’s a relief to be reminded that I am just a tiny part of it all. Gazing up at the night sky (or visualizing doing so) gives me renewed energy to pursue the things that are most important to me and to make the most of my time here and not worry so much about whether it’s significant to anyone else.

Swimming with Suzanne


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.

Summertime = Pool Time
Summertime = Pool Time

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.

Suzanne and I reunited at the NFED Conference in Orlando in 2012.
Suzanne and I reunited at the NFED Conference in Orlando in 2012.

 

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?

This handsome guy is Suzanne's son Tyler, who is also affected by EEC.
Suzanne’s son Tyler, who is also affected by EEC.

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.

Dr. Hulnick


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 Hulnick, 50, Plastic Surgeon

By Henry Goldman, Inquirer Staff Writer

June 16, 1989

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.