Wed 13 Jul 2005
Just so you know this post is about the present. But in order to give you depth and knowledge, I have to back up here and give you some history:
1982–I am five, I have visited the hospital in the middle of the night numerous time due to severe ear infections. I still remember sitting in the backseat, staring out at the dark highway at 2am, watching the lights and sounds of the city as we drove to the emergency room. One day my Mom picked me up from Kindergarten early and took me to the hospital. Tubes were placed in both of my ear drums–that gentle flap of skin that protects, vibrates, and creates hearing. The tubes cause my infected ears to drain, therefore reducing the ear infections.
1984–I am seven. Sammy and I have our tonsils taken out the same day. I also receive another pair of tubes. Sam upstages the entire day by waking up in the recovery room, ripping out his I.V needle, hopping down from his bed, and taking off toward the nearest exit. My mother–who is pregnant–was sitting in the kitchen cafeteria when she is paged over intercom to get back to the nurses station right away. My brother ran right by her while she was making her way to the station. When asked ‘where are you going?’ he yelled, “Home!” over his shoulder. Later Sam dumped the entire contents of his liquid medicine on my father and the nurse, refused to let the doctor look down his throat, and got my Dad busted for lying down next to him in his hospital bed. I, however, was the resident surgery veteran and entertained myself by watching Doctor Who reruns and sucking on popsicles.
1986–A third round of tubes is placed inside my fatigued ear drums. Hearing loss in the right ear is consistent. I have not been allowed to put my head underwater for years, I wear earplugs in the shower, and I realize during Fourth Grade Swim Week that I am grossly inadequate. I am placed in the lowest swim class available, the one where all the kids tread water in the baby pool and practice blowing bubbles in the water. I am mortified, embarrassed, and terrified I will drown. I fail the swimming lessons. It is an uphill battle that I am still fighting: Learning how to swim successfully and with some sense of grace.
1988–It is revealed that the repeated tube insertion has left a hole, a “perforation” in the right ear drum. This could be the cause of the hearing loss. Granted, the ear infections are gone, but a hole has remained. The doctor remedies this by removing a piece of tissue from behind my right ear and grafting it over the hole. I show up to my sixth grade class looking like Frankenstein: stitches behind my ear, part of my hair shaved, and a big bandage taped over part of my head. A month later my hearing has improved and I am allowed for the first time in my life to go sans-earplug. That summer I attend a family reunion and discover the joys of the swimming pool. Donning a pair of goggles I became a mermaid, a swimming machine.
1989–My body rejects the graft. It slowly peels off and fades away, leaving the hole open and exposed. My hearing loss returns–as does the earplug.
1990–I return to the hospital where I’m knocked out and the doctor searches my ear for clues. He finds none, removes scar tissue, patches me up, and sends me home. The only difference is that I am 13, and feeling heavy anxiety. The thrill of the hospital is gone, I hate the feel of anesthetic, the idea that I’m asleep by sedation and that people are messing with me. I have become neurotic about my ear.
1991–The doctor decides to try the graft again. This time the incision behind my ear is smaller so I can hide it under my hair. Wearily, I am a surgery veteran. I wake up in the recovery room and refuse to rest. I force myself awake, claiming to be fine; I stumble into my clothes, and deny the use of a wheelchair to the parking lot. I climb into my mother’s car and pass out for six hours. Six months later there is an infection and the graft doesn’t take a second time.
1995–I am about to embark on my life as an adult. The doctor, who I have seen since I was four, takes one last look at me and makes noises about wanting to do the skin graft a third time. The size of the hole has increased. I dismiss it, resuming the stance that I’m screwed, plain and simple. The last thing I want to do is show up to college with a bandage on my head and three follow up appointments in Portland. The hearing loss aids me immensely during the loud noisy nights in the dorm.
1999–I see an ear doctor in Seattle. He looks at my ears and mentions that there might be a problem with the Eustachian tube attached to the right ear. If we cover the hole, there will be no place for air to go, and that’s why my body rejected the grafts. It seems plausible, but there is no mention about what will happen to me in the future. He does say that the hole is large and that the skin might fold over and start growing into my inner ear. I make note to always have my doctors check my ears for sign of skin takeover.
2005–I am awoken by the sound of loud whistling, than a ringing, and than a dull consistent sound. With horror I realize it is all coming from inside my head…earplugs are useless. The white noise from a fan dulls the sounds and I resume sleep. I go through this every other night, never knowing what kinds of noises will immerge from my ears. Sometimes it sounds like a dull ring, other times it sounds like the whistle of an airplane gliding in and out of my brain–last night it was an inconsistent whistling. I make an appointment with a renowned ear doctor at the UW Medical Center. During the examination, a TV screen in the doctor’s office projects the inside of my ear for my viewing pleasure. It is the first time I have ever seen what my inner ear looks like. I am shocked…it is red, discolored, unhappy and very ugly. (I try very hard to be a big girl and not cry). The doctor is pretty impressed with how unhealthy my right ear is. He shows me the yellow, crusty, scarred piece of my ear drum and claims, “That’s all that is left.†The poor little guy barely vibrates when air is blown on him. The doctor says “We need to take it all out and start over.” He says, “We’re going to reconstruct you a new eardrum using cartilage from your ear.” Can you do that? “Cartilage is stronger than tissue, which is probably why the tissue grafts didn’t take.” What about the ringing in my ear? “Uh, that’s the least of your problems…although the fact that your eardrum is defunct might have a lot to do with the noises.” What if I don’t have the surgery? “Well, that little scarred piece of ear drum will fold down into your ear and grow around all the little parts and cause major problems. If we make you a new ear drum, it will prevent future damage.” When should we do this surgery? “Two weeks.”
Stay tuned…
July 13th, 2005 at 11:50 am
Crap.
Your ear problems make my hernia and Johnny’s throat problems look like a couple of birthday parties. I’m sorry dude. Keep us abreast; and we wish you the best.
July 14th, 2005 at 12:24 pm
Hey Mara! i just wanted to say hello and that i am reading your blog for the first time in a while. all the ear stuff is crazy, i cant believe im yr sister and i didnt even really know the whole story. im glad you wrote it.
i also wanted to tell you that im really loving your bus transit stories, yr writing is so good and i can REALLY relate to everything. i would say im a “bus veteran” as well, i know it all too well, although i ride my bike mostly now.
i love your stories, ive only worked at the Avalon for a day and already i have some funny stories about working at an arcade and movie theatre in southeast portland.
hope to talk to you soon, i miss you, i wish i was there and not here, working thirty hours in one weekend, listening to the dinosaur ticket game play the same two measures of Love Shack over and over and over and over…..
—-Bill*
July 14th, 2005 at 12:44 pm
Mara,
I’m sorry you have to deal with all this; it must truly suck
I’ll be keeping a close eye on your blog to see how you are doing; Feel free to drop me a line if you wanna talk.
July 20th, 2005 at 11:06 am
I happened on your website doing a search for inner ear issues, thank you for publishing your story and I’m curious as to what happens to you.
I grew up without any tubes or ear infections but in 1999 I had some hearing loss and ended up in surgery where they replaced the stapes bone. I’m experiencing alot of problems now. In your stories you never really mentioned how you felt after surgery, I was extremly ill for four days and couldn’t go back to work for 6 weeks, I couldn’t look up for almost a year without getting dizzy. I go back to the specialist on August 1st, I’m really freaked out. But I need to do something the noise is driving me crazy, Its only in my right ear (same ear that was operated on) its like when you put your ear up against an innertube that has a hole in it. Constant noise, I’ve somewhat learned to deal with it but the worst part is my neck, the pain goes down from my ear to the top of my shoulder. I’ve been treated for a ear infection over a month ago nothing has changed. Do you have any suggestions or questions that I could ask the doctor that might help my situation. Thank you and I hope your surgery goes well.
March 8th, 2006 at 8:07 pm
Hi I was reading your story and it sounds so much like my 13yr old son’s story. He has just had surgery for a 3rd time having skin grafts and reconstruction on his ear drum. I know how you must feel. Good luck in the future