Man, I have been slacking with posting here (or anywhere, really) lately. I actually thought about taking a little hiatus while I try to focus on some other aspects of my life, but that just seems too severe. Plus I want to be able to write when I feel like it, and the moment I say “I’m taking a hiatus” I will probably be struck with an uncontrollable urge to write.

Let me just give you a little update on things here. First of all, today I FINALLY called the Cheyenne Mountain Resort to book the extra nights we’ll be staying for this summer’s NFED Family Conference. I called the reservation line and it automatically puts you on hold while you wait in the queue.

I’d like to just mention that the hold music was so fantastic that I wanted to sit there on hold for as long as I could. I’m serious! As I listened to it (and did a robot-like dance in my chair), I wondered if it was the hold music that they talked about on an episode of This American Life, which I used to listen to religiously. After I got off the phone I googled “awesome hold music” and found out that yes, it was the same tune.

Now that I’ve piqued your interest, check it out for yourself here. I’m actually listening to it as I’m writing this post.

Also, if you’ve never listened to This American Life on NPR, you might want to take a gander. An auditory gander.

Speaking of auditory. Yesterday I had a routine visit to my ENT. Good news! My ear is stable. Not that I really expected anything different, but it’s always nice to get confirmation that you don’t have a diseased inner ear. I also had a hearing test. Blah.

I’m not terribly fond of the audiologist my doctor uses. This is the same woman who got the silicone stuck in my ear last year, but even before that I found her annoying. First of all, she speaks really softly, which is a bad quality in a person who is working with hearing impaired people, right?

One of the other things that makes me not take her seriously is that when she does the test where she says a word and I have to repeat it, she doesn’t do a very job of covering her mouth, so I can see her forming the words on the other side of the booth.

Also, it’s the SAME WORDS over and over! They are going to think I had a miraculous regeneration of my hearing because I know it’s:

Ice cream. Toothbrush. Sidewalk. Hot dog. Backpack. Lollipop.

Add a wind sound in my good ear.

Hot dog. Ice cream. Toothbrush. Backpack. Lollipop. Sidewalk

I’ll admit it gets hard when it is just one syllable words. Sometimes I have literally no idea what she said, and I can’t even think of a word to repeat back so I just shake my head in defeat.

At a couple of moments during the test, she turned up the wind sound SO loud in my good ear that I actually had to pull the headphone away from my ear. What the hell. Maybe this is what I don’t like about her the most. She does not seem to notice how sensitive my ears are.

It seems like a paradox that I could be so hard of hearing, yet so sensitive at the same time. I have been thinking about it a lot in the last 24 hours. I am not sure if it’s because I have to struggle to hear sometimes that I am so sensitive, or if I would be this sensitive even if I could hear perfectly. In fact, maybe it’s a blessing that I can’t hear perfectly, because maybe all the loudness in the world would drive me insane.

I really don’t like loud noises. I never have. When I was growing up, my dad had a dirt bike. I don’t think I ever got within 50 feet of it when it was turned on because it was so loud. In fact, when I knew he was going to start it up, I would run into the house and cover my ears. Even now, I practically have a heart attack when a motorcycle drives by me and revs the engine.

Come to think of it, maybe I am just a huge wimp…

Well, that’s enough of an update for now. I need to hit the hay! Goodnight and good luck!

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.