Category Archives: Feelings

Full Speed Ahead


Surgery is looming at end of this week like an iceberg on the horizon. (Dramatic, right?)

Scheduling surgery as an adult is a weird thing for me. I had so many surgeries as a kid that I just grew accustomed to being told when the next one was and steeling myself for the inevitable. But as an adult, I’m the one in the driver’s seat. I’m the one who looked at the calendar and said “Friday, November 22nd would work for me! Sign me up!”

I don’t know if anyone ever really wants to have surgery. Even if you know that the results of the surgery will make your life better, you still have to get over the hump that is the surgery itself. Even if you’ve had 20+ surgeries before, there is still a sense of dread at the prospect of putting on a skimpy hospital gown and allowing yourself to be knocked unconscious so a roomful of strangers can poke, prod and cut you open. And I’m pretty sure they peek under your hospital gown and have a giggle while you’re unaware.

The upcoming surgery isn’t a HUGE deal, really. It is an outpatient procedure, which means I don’t have to stay in the hospital overnight. The procedure in having is a revised radical mastoidectomy.

Again.

I had the same surgery done last year but recently learned that there is still some disease in the ear which needs to be removed. There two things about this type of surgery that make me nervous: One, the behind the ear incision. If you’ll recall in my last post, I remember all too well how it felt when that got infected and failed to heal properly. Fortunately, last year it healed fine, so I know it can be done. The second worry (this should probably my rank higher than the first worry) is that the facial nerve runs through the surgical site. There is a risk that it could be damaged and leave me looking like a stroke victim. I’ll admit, I am a little vain about my looks. I’ve learned to love my appearance and can see the beauty in my imperfections. But I really do not want to add facial paralysis to my list of issues. Really. Fortunately they use a nerve monitor, which somehow attaches to my face and can sense if the nerve is being damaged. I’m not sure how it works, only that my face was sore from it and I had a bruise for a few days afterward.

Last year I was so elated to be through the surgery that I took “drugged up” selfies and posted one on Facebook. I’ve made a mental note not to repeat that this year.

Post surgical selfie. Not my best work.
Check out my sweet bandage and facial bruise.

Despite having gone through this last year, I am not exactly eager to do it all again but I am going to because it’s the right choice.

This week ahead is very busy, but I expect that even if I fail to post anything else this week, I will have plenty of time to catch up next week. I have a graphically detailed ear-suctioning post in the works which I’m sure you’re all looking forward to. Stay tuned!

H-A-double-L-O, W-double-E-N, spells Halloween!


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Do i look sufficiently excited?

Halloween has never been a favorite day of mine. As a little kid I was unsettled by the fake tombstones and cobwebbed skeletons that adorned my normally pleasant-looking neighborhood. Even now, I don’t understand people’s fascination with death and gore, like the current zombie craze that affects some of my coworkers. I have lived through experiences where I felt like a zombie. Remembering my own face colored in various shades of bruise, blood leaking from my nostrils, or the corners of my mouth after surgery, and remembering just how awful it felt, both mentally and physically… I just don’t understand the appeal of pretending to be undead.

Masks are also unsettling. The frozen expression, even if it is a jolly one, hides the real emotions and intentions of the person wearing it. Even characters at theme parks have given me an uneasy feeling and I never rushed to be photographed with them. Who knew what kind of creep was lurking under that cheesy grin and oversized head?

Surgeons wear masks.  The second surgery I ever had in my life was on October 30th, 1980. I was only 4 months old at the time so it is unlikely that I consciously remember any of it, but I wonder sometimes if my aversion to Halloween comes from being in the hospital over that time. Undoubtedly the children’s ward was decorated for the occasion.  Or maybe my aversion comes from the simple fact that every time I saw people with their faces covered by surgical masks, I was having an unhappy experience.

When I was really young, I enjoyed dressing up like a princess or a ballerina (which sadly I can’t seem to find pictures of!).  In the snapshot above, I’m wearing a homemade scarecrow costume. (Thanks, Mom!) Not once did I want to dress up as something frightening.

As I’ve mentioned before, my technique for surviving at school was to blend in as much as possible.  While Halloween could have been a really fun time for me to experiment with crazy costumes or even disguise myself completely, I almost never did this.  By 4th grade, Mom had apparently grown tired of making homemade costumes and instead bought me a cheap clown costume.  It was a hideous one-piece polyester affair, with a wire hoop in the seam between the pants and the shirt which made it look like I had huge hips.  As I was just entering puberty and beginning to feel even more self conscious about my body, this was not the greatest choice.  All day I bumped those awkward hips on chairs, desks, fellow students – you name it.  By the time I boarded the bus home (where I had to turn sideways to make it down the aisle), I was ready to burn that stupid costume and never dress up again.

As often happens in childhood, the thing you hated and passionately swore you would never do again is soon forgotten about. The next year, I dressed as a witch, complete with a long black wig, green face paint and a fake nose.  It was the first costume that really disguised my true identity and let me blend in with the other kids.

In 6th grade, my middle school put on a Halloween dance. Everyone was to go in costume. Under normal circumstances, I wouldn’t be caught dead going to a school dance, where I envisioned myself sitting alone on the sidelines as everyone else had the time of their lives. However, remembering the anonymity of last year’s witch ensemble, I decided to check it out. I dressed as a fortune teller in a dark dress with a sparkly shawl and the trusty black wig. I wore false eyelashes and bold lipstick. At the dance I hung out with my little group of friends but as I walked among the other students, I held my head high and once again felt liberated from my usual bumbling, apologetic self. Some kids even peered at me and wondered who I was. “I sit behind you in algebra!” I said to one girl, who had apparently been unaware of my existence until that very moment. After the dance (at which there was little to no actual dancing), I was high on adrenaline from having just accomplished a social milestone- my first school dance- without having felt ostracized or awkward or even a little bit self conscious. The power of a costume!

Fortunately as I’ve grown up, I have learned to be much more comfortable in my own skin, helped by little bits of “costume” that have been added along the way, like all the surgeries that have reshaped my face, the dental work and artistry that created my smile and the makeup I wear to accentuate my eyes. Most everyone has some means of improving their natural looks to make themselves presentable.

I’m still not a big fan of Halloween, though!

Dear Diary, Thanks for keeping all my secrets. Love, Heather


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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.

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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:

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Oral Fixations


This past Thursday I had to get a root canal. I’ve had two before and found them to be among the least annoying dental procedures I’ve ever had. Despite that knowledge, I still felt that familiar sense of impending doom as the hours passed and my appointment time drew nigh. Logically, I know that I have survived countless dental procedures before this one. Logically, I know that the endodontist has performed countless root canals before this one. Logically, I know that getting this root canal will make future dental experiences more bearable because that tooth will no longer send me angry pain signals every time it is touched. Despite all this logic, I would still rather not climb into that chair.

The first memories I have of going to the dentist was when I was 3 or 4 and my mother had to take me to several before we found the right one. One dentist looked in my mouth and shook his head. “This is beyond my expertise.” Another pediatric dentist had straps on the exam chair, to restrain the arm flailing and leg-kicking that ensues when you frighten a small child. Thankfully, my mother said no to that place.

We ended up with a pediatric dentist named Dr. Prusack. He reminded me of the picture of Shel Silverstein in “Where the Sidewalk Ends” I was both charmed and intimidated by this man. On my first couple of visits I tried to pull some tricks. The waiting room had a play area with a tunnel that went under the magazine table where I halfheartedly attempted to hide. I cried and I kicked my feet, but Dr. Prusack would have none of it. He’d tell me to knock it off, and if I relaxed and just let him work, it would be easier for both of us. Because of my ectodermal dysplasia, most of my teeth came in with pre-existing cavities, or with very thin or non-existent enamel. So I saw Dr. Prusack often for fillings and crowns in addition to regular cleanings. At the end of each visit, I’d get to select a plastic trinket from the toy chest at the end of the hall.

When I was 9 or 10, it was time to start orthodontic work. A few doors down from Dr. Prusack was Dr. Bond, James Bond. (Really.) He fitted me with the first of many “appliances” which were designed to expand my palate and push my front teeth forward. Because of my cleft palate, my upper jaw was narrow and my two front teeth grew crookedly on a gum-island that was separate from the rows of teeth on either side.

Orthodontic work was never a fun time. Because of the thin enamel, my teeth had always been extremely sensitive to cold and touch. I compensated for this while eating and drinking by warming up cold foods on my tongue until I could chew them, or by avoiding my teeth entirely. Cold (or hot) drinks were delivered directly to the tongue and down my throat without meeting the teeth at all. I always brushed my teeth and rinsed my mouth with warm water. So plunging my teeth into a tray of cold impression material was nothing short of agonizing. I can’t even think of a way to describe the feeling. The pain sent chills through my entire body, making my stomach lurch and my eyes water. I really don’t think the dentist or assistants understood how awful this felt because they’d always coo and tell me to hang in there, it would be over in 2 minutes. After a while I learned to ask them to mix up the material with lukewarm water, and while it was still unpleasant, it saved me from feeling like I was going to die in that chair.

Something perplexing began happening to me during those times. Lying back in the chair while Dr. Bond worked in my mouth, I’d begin to feel anxious. Waves of heat began passing through my body and then a terrible itchiness would erupt under my skin. It was like the chair was made of prickly material and the back of my legs, my butt and my back were being poked with it.  I’d squirm in the chair and scratch here and there to try to stop it.  The more itchy I felt, the more anxious and hot I’d get and the worse the itching became. Finally the squirming would become so disruptive that Dr. Bond would ask what my problem was. I don’t know why, but the itchy feeling embarrassed me and I never told him about it. I would excuse myself and go to the bathroom where I would quickly yank down my jeans, press cold wet paper towels to my skin and scratch myself like a dog covered in fleas.

As if all the discomfort of dental work wasn’t enough, I now had to have this baffling discomfort with my skin too?  My mom switched laundry detergents, thinking that perhaps I was allergic. I began putting lotion on every day before I got dressed, thinking it was a dry skin issue. Nothing seemed to help.  I knew that the itching was heat related, however, it didn’t always happen when I was hot or in a hot environment. Finally it dawned on me that it was stress-related. For people with skin that functions properly, when you start feeling stressed, you start to sweat.  In my case, all the areas that would get itchy were areas that couldn’t produce sweat. Whenever I would feel anxious or stressed (at the dentist office or in the middle of a math test), I’d feel those dreaded waves of heat and itching. I still don’t know whether this prickly feeling comes from the nerves simply getting too hot, or if I actually have some semblance of sweat glands that are just trying to do their job and can’t. Luckily as I have grown up, I have learned to recognize when that itch is about to start and I am usually able to calm myself and cool myself down before the itching gets really out of control.

It may seem like I have digressed from the original topic of this post, but bear with me. The anxiety that I often felt during all those years of orthodontia can return to me in an instant when I am at the dentist. Even though now I am all grown up and can make my own decisions about treatment and such, when I lie there with that little light shining down in my face and the smell of latex gloves under my nose, I am once again at the mercy of the dentist. While for the most part I can lie back and let my mind go elsewhere, there are still moments in which I feel that familiar heat rising up inside and I have to hold back the tears because I am suddenly afraid and defenseless.

Recently I was having prep work done for a crown. It’s normally a boring, routine procedure.  (Except nothing is ever routine with my mouth.) Several things happened on this visit that wore me down. First, due to all the scar tissue in my gum and cheek area, putting the Novocaine in is so painful it brings tears to my eyes. Then, he couldn’t get the temporary crown to come off, so he was using a slide hammer to try to whack it off even though I’d asked him specifically NOT to do that. Imagine taking a screwdriver and placing the tip against your upper canine.  Then, take a hammer and whack it a couple of times.  Awesome, right?  So my nerves were quickly getting frazzled and the temporary was not coming off.  He ended up using the drill to break apart the temporary crown. Later, when he took an impression of my upper teeth, my bridge came out with it. It’s really not a huge deal because the bridge is just cemented onto my dental implants. It doesn’t hurt or anything and can be quickly cemented back in. But it is a weird feeling to have it off because suddenly my upper lip caves in and I can’t talk without a comical lisp. The dentist gave his assistant my bridge so she could clean it up a little before putting it back in. Then he left the room to check on another patient. As I sat there trying to calm myself from the sting of the needle, the jarring whacks to my face, the drilling and now the insult of sitting there without my front teeth, it was all I could do not to burst into tears. I really wanted to get up and walk out at that point, but my bridge was out and the tooth to be crowned was still unfinished. On top of all that was that another tooth in that area was being sensitive, even with the Novocaine. Which is why I ended up needing a root canal.

So on Thursday I was feeling just a tad nervous about voluntarily putting myself back in the chair. My hands were shaking as I sat in the waiting room. Fortunately the endodontist was incredibly gentle about giving me the Novocaine. It stung only a little and the whole procedure went by smoothly. That night and the next day I didn’t have any pain at all, except for a little tenderness where the needle had been. So of course I’m glad I did it, and having a good dental experience like that reaffirms the notion that sometimes you have to push yourself to get through something for the benefit of your future self.

Where it all began – The story of my birth.


It was a dark and stormy night…

No, just kidding.  It was a sweltering midsummer afternoon when my mother’s contractions began.  My father’s cousins had come over to swim in the pool that day and through the window my mother could hear them laughing and splashing as she lay on the bed.  She would have been out there with them, cooling off from the heat, but she hadn’t felt so good and needed to lie down.  When my father came home from work a couple of hours later, he would take her to the hospital where I would make my debut.

My birth was a greatly anticipated event.  Not only was I the first child for my parents, but I was the first grandchild and first great-grandchild for all parties involved.  Everyone was waiting with bated breath.  Because my mother was young and healthy and there were no known health issues in our family, she had not had any ultrasounds or prenatal testing that would have indicated anything was amiss.  They didn’t even know if I’d be a boy or a girl.

Labor and delivery went as expected and I came into the world at 11:44 pm that summer night.  It was immediately obvious that all was not “right” with baby me.  They allowed my mother to hold me for a few minutes before taking me away.  While a cleft lip and palate was not an unheard of birth defect, my “clawed” hands and feet, sparse hair and eyelashes were cause for concern.  The doctors wanted to examine me further to determine if I had missing or deformed internal organs or mental deficiency.

My mother was taken up to her room without me.  My father went home to share the news with Gram and his cousins who were waiting to hear.  My mother called her mother to let her know that I had arrived but that there were some unexpected complications.  No one would tell her anything, so she didn’t know what else could be wrong with me besides the obvious.

It would be a long, lonely night.  At some point not long after she had settled into her room, they brought in another woman who had just given birth.  She had her baby with her, and all night my mother could hear the mother and baby on the other side of the curtain, cooing and bonding with each other.  Meanwhile, she had no idea where I was or what was going on. It wasn’t until early the next morning that I was brought in and she could finally hold me again.

Later that morning a plastic surgeon came in to talk to them about cleft lip and palate. The doctor was old and what he said was blunt.  “Your daughter will never look normal.  The sooner you accept that, the better.”   Despite this harsh diagnosis, he was the one who referred my parents to the cleft team at St. Christopher’s, and the skilled hands of Dr. Hulnick.  It was also sometime that morning that someone came in with pamphlets from the local AboutFace organization, which was a support group for people with various facial deformities.

Within the first week of my life, my parents took me to see the cleft team at St. Christopher’s, which was associated with Temple University.  This would be the first of many times I’d endure a full day of examinations.  The team made my first palatal obturator – which was an acrylic plate that fit across the roof of my mouth and allowed me to drink without aspirating.   (More on all this in a future post!)

Of course I don’t remember any of this.  I had to call my mom and asked her for the details.  Growing up, I’d always known basic facts about my birth, like how I’d been born at 11:44 pm, and that I surprised everybody with my birth defects, but I never really asked my mom how she felt.  How anyone felt.  I mean, was there some level of disappointment that a perfect child was not produced?

She said she remembers feeling fearful and overwhelmed.  She wondered how she would be able to provide everything I needed.  There was a lot of uncertainty about what my diagnosis meant, but there was such joy at my arrival that it outweighed any negativity.  Nana, (my maternal grandmother) was really supportive.  She was a nurse, so she was battle-hardened when it came to medical stuff.  She came up from Maryland and stayed with us for a week after I was born.  My other grandmother, (Gram), lived with us (technically, we lived with HER, but I didn’t realize that until I was much older), so  she was there every day and helped to hold me down while my mom applied my obturator and cleaned the junk out of my nose.

I asked my mom if she ever felt uncomfortable taking me out in public before my lip repair.  She said that she wanted people to see me and that there was nothing to hide.  She told Gram, “let people look if they want to look!”  They took me to the mall, to the grocery store, the bank – everywhere.  People would sometimes ask if I had been in an accident or if I’d gotten hurt.  She thinks it was good for her to talk about it.  Only once does she remember losing her cool.  While waiting in line for a teller at the bank, she noticed a man who would not stop staring at me.  He never said anything, he just stared.  Finally she snapped at him “Would you like to take a picture?”

It was interesting talking to my mom about this.  She began to recall things she had forgotten.  As we talked, I realized that she might not be remembering everything with exact accuracy.  For example, she recalls being told about the NFED soon after I was born.  However, the NFED wasn’t started until 1981.  She probably found out about it through a doctor or counselor at a hospital when I was still quite young.

I have some of the records from my birth.  No pictures, but here is my Discharge report.  I think the use of the term “clawed hands” makes it sound like I was a gryphon or something.  Which is actually kind of cool.

Laughter… Better than Medicine


It is a crisp October night in 1984. I’m sitting at the kitchen table watching my mother struggle to cut shapes into a pumpkin, her brow furrowed in concentration. The mouth of this Jack-O’Lantern is lined with zig-zagging teeth and as Mommy slides the knife upward, it cuts through the pumpkin flesh and up into the nose-triangle. “Dammit”, she murmurs under her breath. She pulls the knife out and resumes cutting from another point. Moments later, on another upward cut, the knife slips and a chunk of pumpkin clatters to the table. Mommy lets out an exasperated sigh and declares, “Well, now the pumpkin has a cleft lip, just like you!”

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