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

Oh, hello!


Happy New Year, and all that jazz.

Here is something I have been pondering lately:

I tend to be (over)sensitive to the way people smell. I really dislike smelling bad breath and gross body odor. I’m not averse to all body odor, I mean, I spent part of my youth in Vermont, among pot-smoking, dreadlocked, and wool-sweater-wearing people.
But I’m getting off track.

What I’ve been contemplating is how I haven’t ever noticed any of my doctors smelling bad. Or smelling much at all, for that matter. I wonder if they have to take some kind of personal hygiene class in med school? Or if it’s just that the type of people who become doctors are also the type of people who take pride in regular bathing and grooming habits.

Just some food for thought…

Wherein I Air More of My Flaws


I’d really like to be one of those people who sends a Christmas card to everyone I’ve ever known. I love sending handwritten notes to people and I love making cards. This year was pretty much an epic fail as far as that goes, thanks to chronic procrastination, an inability to say “no” to anything, and because I allow my work life to mentally drain me.

At work, there is a motivational poster that says:

Strength doesn’t come from what you can do.
It comes from overcoming the things you once thought you couldn’t.

The poster is meant to help people who are trying to get healthy by eating right and exercising, but every time I see it, I think about overcoming the mental challenges in my life.

Perhaps “psychological challenges” might be a better way to put it. I’m talking about these preconceived notions I have (and presumably everyone else has too) that often hold me back from being my best self. Some of them are engrained from childhood. Maybe they’re even inherited. Others, I’ve picked up along the way.

Probably the biggest mental block for me right now is the idea that I am never going to get my procrastination issues under control. I look back over the majority of my adult life and I see it – the ugly beast that is procrastination. It doesn’t matter what I’m doing, my brain will tell me that I should be doing something else instead. Or perhaps I will have several goals to accomplish and this invisible force will compel me to check my email and Facebook 47,000 times instead of simply focusing on the task at hand. Before Facebook, it was MySpace, and before that it was LiveJournal and Xanga and AIM and ICQ.

I’ve taken some steps to eliminate the temptation to procrastinate from my life. I no longer play any smartphone games. I turn off most of the notifications on my phone, so if someone sneezes on Facebook, I remain blissfully unaware. I know I could take it further by shutting down my Facebook account entirely and by only checking my email from home, but I think I should be able to learn not to give into temptation so easily.

Like the little engine that could, it’s all about thinking you can, right?

In other news, I got my hair cut last night:

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Sometimes overcoming a challenge is simply about doing that which makes you uncomfortable. I used to be afraid of going into hair salons because I believed that I wasn’t attractive enough to be in that kind of environment. (It sounds absolutely ridiculous as I type it!). I was also afraid to try things with my hair because I didn’t want it looking any worse than it already did. But once I got up the courage to go, I learned that they could do some amazing things with my hair and no one ever said I had to leave because I was ugly.

If I don’t post again before Christmas, I hope you all have a beautiful holiday with loved ones and a safe and happy new year.

xx

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.

Modified Radical Mastoidectomy, Round 2


Yesterday I had my mastoid surgery. There was a brief moment in which it seemed the surgery might not happen. My dad was supposed to pick me up at 8am but the car (which was actually MY car that he was borrowing) broke down as he was on his way to get me!! Of course I went into full on nervous breakdown mode. I tried to call a cab but the local taxi company wasn’t even open yet and the other place I called said they didn’t service my area. I was about to start knocking on neighbors doors and begging for rides when I thought to have my dad ask our mechanic if he had a spare vehicle. Amazingly the mechanic had one and was willing to let us use it for the day! He said that he wouldn’t do that for just any customer but he considers my dad a friend. How sweet is that? So I was driven to and from the surgical center in a vehicle with a Yankees sticker and an NRA sticker on the back. And the keys were on a rifle bullet keychain. (It’s funny because I’m a Red Sox fan and a vegetarian.)

We managed to get to the surgical center at 9, which was only 15 minutes late. Everything went as usual- the check in and paperwork, the changing into hospital clothes and then the sit-and-wait. My dad stayed with me until it was time to go into the operating room.

At this place they have you walk into the operating room and climb into the table on your own. It’s kind of an odd feeling. Last year when I had the same surgery, I told the anesthesiologist that I was nervous and he gave me something that relaxed me the second I was on the table. I wish I’d told the anesthesiologist the same thing this year because it took a lot longer for me to go under this time. I was aware of being strapped to the table and aware of the sensation of the anesthetic creeping through my veins. I got that familiar buzzing sound in my head… and yet I was still awake. I did finally lose consciousness but it seemed very slow.

When I woke up I felt like I was coming out of a dream, except I couldn’t remember a thing. My mouth and throat were so dry I thought I was suffocating. I was really freaking out about not being able to breathe. My lungs felt like I had just run up 3 flights of stairs and I couldn’t catch my breath. Also I was really hot so I was fighting to kick off the blankets. There were 4 nurses around me trying to calm me down. Luckily I didn’t punch anyone. On top of everything, my ear was really sore! I was so annoyed. I wanted the nurses to fix everything- help me breathe, cool me down, make my ear stop hurting. So irritable!

After a few minutes I came to my senses and calmed down. I drank all the water and had two ice pops. My dad came in and sat with me while I gathered myself.

When I was home later, I was trying to get comfortable on the couch and I started crying again. Dave sat with me and held my hand while I wept for a few minutes. We watched the news, but I kept crying because the stories were all so sad. Then we found some comedy to watch and that helped me stop crying.

I expected that it would be a rough night because I remembered last year I had a really uncomfortable night on the couch that first night after surgery. Fortunately this time was different. I managed to create a structure of pillows to support me so that I could relax fully and not worry about rolling onto my sore ear. Of course I had the huge bandage on so no matter how I put my head there was a little discomfort. I woke up a couple of times during the night but just enough to adjust my position a little and then fall back to sleep.

In the late morning, Dave took my bandage off. There was a lot of blood on the gauze that had been behind my ear. You’d think after all I’ve been through I’d be ok with seeing my own bloody bandages but I’m not. I felt a bit like I was going to pass out but with some deep breaths and a cool washcloth to my face I got it together. Dave said the incision looked good. My head was happy to be released from the bandage.

Today I took it easy. Just hung out on the couch with my cat and my iPad, watching movies. I haven’t taken pain meds since last night. I am pretty excited about that and wonder if I will need to take them at all. My ear is tender and throbbing inside but the pain is not unbearable. I hate how the pain meds make me feel woozy and sleepy but if I try to sleep I can’t get into a deep restful sleep.

So that’s the update of for now. I’m sure I’ve been posting too much about ears so will make my next post about something more exciting.

Deaf As A Post – Part 2


Throughout my late teens and most of my 20’s, I lived in ignorant bliss when it came to my ears.  My “bad” ear was stable enough that it didn’t bother me.  Once in a while I would have nagging thoughts about the cholesteatoma coming back, so I would make an appointment with my ENT to reassure myself. He was affiliated with Yale, so I figured he would know what he was doing.  He said my ears had obviously been through a lot but that things looked fine. All the time I wondered if I could really trust him and if maybe he was just too nice.

Something about reaching 30 made me start thinking more seriously about my health issues. I decided to find another ENT and get a second opinion on the state of my ears.  I did a Google search for “best ENT in CT” and found someone else nearby.

On my first visit, I am brought into the “Micro Room”, which is a stark white room with a reclining exam chair in the center. The windows along the back wall are covered with vertical blinds behind which there’s nothing to look out at except a flat gravel roof and brick walls of the buildings next door. The only pictures on the walls are schematic diagrams of the inner ear and a poster promoting the cessation of tobacco use.  Behind the chair, out of view of the patient, is a cabinet with innumerable drawers housing a plethora of medical equipment. There is a swiveling metal arm similar to the kind you see in a dentist office, except this one has something like binoculars on it instead of a lamp. That is the microscope that they will use to see what’s going on inside my head. 

I sit in the chair and face the tobacco poster.  It’s a slightly abstract drawing of a man’s face with arrows indicating all the areas that tumors can develop if you don’t quit chewing tobacco or smoking cigarettes. I look at the linoleum tile floor and around at the ear diagrams. I wonder how many ear diagrams I’ve seen in my life, and yet, if you sat me down with an unlabeled one and asked me to name all the parts, I’d have to stop after about three words.  As I sit there idly, I can feel my anxiety creeping up. I try to soothe myself with thoughts of what I’ll do later that afternoon.

After a while, the doctor comes in. He is younger than previous ENTs I have visited but I realize that the older I get, the more youthful doctors seem by comparison. We talk about my situation for a few moments before he lays me back and takes a look in my ears with the scope. He explains that the right ear has tympanosclerosis, or calcification of the ear drum. The ear drum is also heavily scarred from childhood ear infections and tubes.

Now for the bad ear. He is surprised at the condition of my left ear and asks me how often I have had the mastoid cavity cleaned out, and when was the last time I had it done. I can’t remember. “About a year ago?” I underestimate. My pulse quickens as he comments on the horrendous state of the cavity and I anticipate that a cleaning session is about to commence.

When I was 9, after my radical mastoidectomy, I added a new medical procedure to my repertoire. The not-entirely-pleasant mastoid cavity clean-out. Or simply put, getting my ear suctioned. I’ll spare you the graphic details of a radical mastoidectomy but visualize, if you will, taking a melon-baller and scooping out the inner ear a couple of times. Removing all or most of the functional parts of the ear and even some of the skull bone in the area. You’re left with a cavity, or a bowl. An empty space. Since the normal function of that area has been destroyed, the ear can no longer clean itself out naturally. So stuff builds up in there. Not copious amounts of stuff, but stuff. Dead skin cells, ear wax, who knows what else.

As a kid, my ENT at CHOP (Children’s Hospital of Philadelphia) would bring me into a darkened room and have me lie on an exam table. His microscope was connected to a camera which displayed the images on a t.v. screen on the wall at the foot of the bed. I always squeezed my eyes closed because I was terrified of seeing my own insides (or anyone else’s, for that matter). As I lay there, he would insert the suction in my ear and I would feel a light tugging. The device would make slurping sounds, like when you’ve reached the bottom of your milkshake but continue to suck at the drops on the bottom of the glass. Sometimes the left side of my tongue tickled as he poked and prodded inside my head. My mom would watch the t.v. screen with interest as the doctor commented on the process. It usually lasted a minute or two and then it was over. If I felt dizzy, I would lie there a little longer until I could function.

My new doctor is surprised that the Yale doctor hadn’t told me I should come in more often for cleanings. My heart sinks a little. I’m frustrated that I haven’t been given better information about my ear (or perhaps I chose not to comprehend what I’d been told). I make a mental note to put forth more effort to ask questions, research and be an advocate for myself.

At first the suction feels good, like scratching at an itch I can’t otherwise reach. It has literally been years since my ear has been suctioned. As he manipulates the tool down further into my ear, it becomes a little uncomfortable. I try to focus on something else, to breathe steadily and relax. But my body is tense: my shoulders stiffened and my hands gripping the arm rests as if I’m expecting to be thrown from the chair at any minute. Breathe… Focus on your breathing, I think to myself deep breaths…

Now the sensations have move beyond uncomfortable. There is painful tugging, as if he is pulling on a scab. “Ow!” I quietly exclaim. Always a courteous and obedient patient, I try not to make a fuss. The tugging, scraping and tickling sensations continue as doctor mutters about how much debris is in there. After several minutes of this, my attempts to remain calm have been forgotten and my focus now is to keep from breaking down in tears.

I’ll admit now that I was feeling very sorry for myself in that moment. It wasn’t fair that a young, healthy person like me would have to be subjected to this medical torture. Not to mention, I didn’t have good health insurance and here he was talking about how I needed to come in for ear cleanings every 3 months. How could I pay for all that? My friends were out spending money on fun things like vacations and houses and… student loans.

Finally, another great tug and the feeling of a chunk of something being ripped out of my ear is more than I can handle. The waterworks turn on. I sniffle quietly as the tears roll back towards my ears. The assistant puts a comforting hand on my arm. “It’s okay honey, just let it out.” Little does she know what she’s suggesting. “Letting it out” would result in a sob-fest that would be hard to stop, so I choke it down and wipe my eyes with the tissues she hands me.

Mercifully, the doctor determines that he has done enough damage for the day. He prescribes ear drops to put in every night and instructs me to return in several weeks time for further cleaning. He tries to cheer me up by saying that we made progress and that if we stay on top of things from now on, it won’t be so bad.

I cry in my car as I drive home from the appointment. I feel defeated. Knocked down. Scared. That night as I put the drops in, I cry some more. I realize that I’d been fooling myself to think that I’d ever be free of the issues that come with EEC. I realize that I am the only one who can choose to improve the situation. I resolve to get serious about my ears and figure out a way to pay for the medical bills that loom ahead of me.

As I write this, over 3 years later, I realize how important that crappy day in the office was. I didn’t know it at the time but it was a turning point for me. Since then, I was able to find a better paying job (one with amazing health insurance!) and I have been dedicated to getting my health issues reigned in. I’ve accepted that EEC is going to be with me for life but I have decided to take as much action as I can and try to stay on top of it. As I prepare for tomorrow’s surgery, I am keeping a positive outlook and remembering to keep it all in perspective.

xx

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!

Deaf as a post – Part 1


Trying to be enthused about starting 4th grade late.
Trying to be enthused about starting 4th grade late.

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.

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!

Musings of an aspiring renaissance woman

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