I'm staring at the bars of my crib and trying to sleep despite a ringing in my ear that will not be denied. I feel as though my body is moving even though I'm lying still. Then, worst of all, a feeling of being infinitely small in an infinitely large world. My senses are distorted and yet hightened at the same time. I begin to cry out of confusion and frustration until mom comes in to hold me.
My mom has a memory...
Howard Johnson's restaurant. Her two year old daughter screaming and crying uncontrollably while holding her ears and staring, unfamiliarly at the rest of the family. She crawls under the table in fear as the room gets loud and distorted. Everyone assumes they're witnessing a seisure in progress.
Third grade was a blur to me...
I spent a lot of time at home because the school nurse never took me seriously. The crowded halls were terrifying and my dizzy spells wouldn't stop. I went to the doctor again and again, but all I really remember was the EEG - being deprived of sleep and then having to sleep in room for scientific study wasn't much fun, but they let me bring my pink, stuffed bunny. The doctor's diagnosis? Labyrinthitis - incurable. "It'll lessen as she gets older," was the doctor's comment on the subject.
How would I describe it...
The dizzy spells seemed to be like a dream to me. I felt outside of reality. I felt like I had no influence on my environment, like I was looking through someone else's eyes. I felt dizzy, sometimes I was lightheaded, sometimes I fell over, sometimes I dropped to the ground. Everything seemed loud. Voices sounded mechanical and down the hall, far, far away. Depth perception was off and everything was in slow motion. They would last seconds or minutes, but seemed to last forever. I was terrified of these moments. I found some places, situations, or people could induce them. Flourescent, neon and strobe lighting. Loud, crowded areas like malls, boardwalks, and parties. Strange, new situations, like a new class or a new club.
It wasn't letting up...
I still got dizzy spells as I got into high school. I rarely thought of it anymore. I learned to control them cause it gave me confidence and kept me going. At times I felt I could induce them, lessen them, and make them stop more quickly. Explaining how would be like explaining how to use a muscle that few people have. Remaining calm seemed to be the key and letting your body move through it instead of against it. If I got upset during an attack they would get worse, last longer, and come more often.
I was getting better...
I forgot about Labyrinthitis going into college. It seemed like a lifetime ago. If I got a dizzy spell in the middle of the mall, or during class, or while snorkeling, I didn't have to lie down anymore, no matter how bad it was. I would just close my eyes for a few seconds, concentrate on being ok, and it would pass. Few people in my life knew I had a problem anymore.
I should have known it wasn't over...
My mom got sick and felt dizzy all the time. The doctors diagnosed her with Labyrinthitis. "I thought that was a kid's disorder?" I asked her. "I guess they're changing their minds now," was her answer. I started looking at information online and read about many types of Labyrinthitis, including Meniere's disease. These resources weren't available before. Some new studies suspected it could be genetic. For the first time I read about "possible deafness." I was glad I was fine, but worried about my future.
The future wasn't far off...
I was getting ready for the company Christmas party. I went to the salon to get my hair done and sat under one of those large, full-head, hair dryers. When I came out my right ear was ringing. I didn't take much notice. I rushed home, got dressed and put on my dangly earrings. The
earring on the right side jangled with a muffled sound, like I was listening to it through a toilet paper roll. I thought I was having a light dizzy spell and ignored it. The party was loud and I had trouble standing straight. "Too much red wine," I thought, "cause I don't normally drink." I went home to bed.
Was it the hair dryer or just bad timing...
The next morning I woke up and couldn't hear out of my right ear. I immediately thought of Labyrinthitis. I went to an ear, nose and throat doctor the next day. I told her I had a history of Labyrinthitis, but hadn't been to a doctor about it in years. They did an eardrum test, fluid test, hearing test, MRI and sent me to an audiotologist for exams. They put me on steriods for swelling and antibiotics for any infection. It kept getting worse and began spreading to my left ear, though the right has been consistently worse. "Labyrinthitis is a general term for any disruption in the inner ear. We're going to narrow it down to a specific problem," the doctor explained to me.
So far, I have Meniere's Disease...
They don't know if they can get my hearing back or if it'll get better. They don't know what causes it or why it suddenly got worse. They don't know if I'll go completely deaf or when. They don't know if someone will find a cure in my lifetime. I was fine a short time ago and now I'm not.
I was upset, but now I'm not...
Meniere's seemed like it was a part of me and being mad or upset was about as realistic as being mad or upset that my foot was at the end of my leg. Love me, love all my parts.
Can you tell I have Meniere's Disease?
Click on my photo to enlarge.
The crazy artist who cut off his ear may not have been so crazy. Click on photo to enlarge.
