There are many things about each of us that are invisible to others: Our politics, our religious beliefs, our sexual orientation, our educational level, our health, etc. We make assumptions about those we meet based on contextual and sensory cues. What color is her skin? How is he dressed? What kind of car does s/he drive? Does he speak with an accent? Where did we meet? What would you assume you knew about me if we met in Wal Mart? At a fundraiser for a local politician? In one of the classes I teach? At church? What do you assume about me if you see a middle-aged white woman? What if you notice the tattoo on my ankle? What if I have on a ratty t-shirt and shorts? Or a slinky black dress? You’re reading this on Daily Kos so what does that tell you about me? We all have to choose to share certain aspects of ourselves with others in order to be known. We all make decisions every minute of our lives about what information to share and who to share it with. We all weigh the consequences of letting others know us intimately. We are all vulnerable to others’ assumptions, prejudices and biases and we all make assumptions, and have prejudices and biases.
What you might assume about me so far – based on what I’ve chosen to share – I’m a middle-aged white female teacher with a tattoo who shops at Wal Mart. You can’t see me through the innertubes so you don’t know the color of my skin. I haven’t told you my sexual orientation. You don’t know how I’m dressed or if I speak with an accent. You don’t know that I live with an invisible disability.
I am profoundly deaf in my left ear. I have 24/7/365 tinnitus. My sense of balance is gone. If you were to spend the day with me, you’d hear me ask "What?" at regular intervals. You may get annoyed or frustrated with me; you may speak to me from another room and wonder why I don’t respond; you might just give up and say "never mind"; you might sit or stand on my left and think me rude for not responding. Unless I tell you that I have single-sided deafness (SSD) and a balance disorder you don’t know.
Six years ago, while driving with my kids in the car, I suddenly experienced a profound sense that I was falling. Thank god we were at a red light as I’m sure I’d have wrecked the car if we hadn’t been stopped. When the light turned green the sensation had passed and I was able to pull into a convenience store and call my husband. I was scared and confused. What the hell had happened? For the next 4 days I intermittently experienced that same sense of falling. The nurse at my doctor’s office said it sounded like a sinus infection and told me to take Claritin. We were leaving for Dallas the next day and the same nurse told me to get some Meclezine for the "motion sickness". I could tell the sensation was about to happen when my left ear would start feeling "full". It never lasted more than a few minutes and I was perfectly fine in between. We went to Dallas, had fun at Six Flags with the kids, spent time with family, and went shopping. An hour before we left to return to Oklahoma it happened again......only this time it didn’t go away.
I don’t remember the 4 hour drive home. My husband says that I kept telling him that everything was too loud. When we arrived home I literally crawled into the house and collapsed on the living room couch. For the next three days I threw up constantly – mostly on poor dear husband who was trying to study for his doctoral prelims (he passed with honors by the way). Again, I have no memory of these 3 days. We have often asked ourselves why we didn’t go to the emergency room. No clue!
When the vomiting stopped I asked my husband to help me bathe. He had to practically carry me into the bathroom. I couldn’t stand so he laid me in the bathtub and gently washed my body and my hair. He helped me dress. He leaned me against the vanity so I could brush my teeth. When I looked up and into the bathroom mirror my face was jumping all over the mirror. What the HELL was going on? After my bath I went back to the couch and tried to use the phone. Dammit, someone left it off the base and it was dead – no dial tone at all. Wait, it was working! No, it’s not! Oh my god, I can’t hear out of my left ear! I can’t hear!!
Because of a bad decision by the local ENT, I didn’t see a specialist for 2 weeks. After a full day of tests of every sort the prognosis was in....Sudden Sensorineural Hearing Loss with loss of Vestibular Function – Idiopathic. In layman’s terms, profound left-sided deafness and no sense of balance with no discernible cause. The tests showed some odd readings from my good ear and my ENT was concerned that whatever had happened to my left ear was also happening in my right ear. He sent me to the Cleveland Clinic to undergo tests for autoimmune disorders which thankfully were negative. Thankfully? I have to admit that it would be somewhat of a relief to know why this happened even if it meant bad news.
The audiologist I worked with gave me some great advice – "get up and move". My wonderful, elastic brain would not learn to compensate if I sat in the chair. I underwent vestibular rehabilitation and could eventually walk without looking drunk. It took six months but I can drive again. I ‘moved’ with a vengeance! This was NOT going to define me! This was NOT going to keep me from living my life. I was NOT going to give in to the fear!
Six years later and I’ve done well. We moved to the Midwest where I teach graduate classes at a major research university. I developed and run a counseling training clinic. I supervise the clinical work of graduate students. I attend way too many meetings. I parent three teenagers. I live and work and thrive.
Six year later and I’m scared and exhausted and sad and angry. "What?" is my favorite word. I’m in a constant state of "fight or flight" because of the tinnitus and the inability to locate sound. If my usual driving routes are closed down I go into a mild panic. My ability to create mental maps is gone. I often run into walls or hit my shoulder when walking around corners. If I don’t know where the phone is, I can’t find it unless I SEE it. I have acute hearing in my good ear and the world is too loud! Group conversations are a nightmare. Loud restaurants and the fellowship hall at our church make me crazy. My neck hurts constantly from turning my head in order to hear. When I’m tired or stressed my brain slows down and my words get mixed up. I often transpose letters when typing. My brain screams for quiet. I get confused easily. Did I hear what I think I heard? Are you talking to me? Lots of external movement throws me off – rain, snow, busy intersections. My kids never remember to walk or sit on my good side. If I can’t see you, you are lost to me. I’m emotionally reactive from the constant state of arousal. I yell or cry at the drop of a hat. Changes in the weather affect my balance. I have to balance myself with my elbow touching the shower wall when rinsing my hair in the shower. I’m afraid.
Six years later and I’ve realized that my drive to overcome this has now become a liability. I can’t make this go away. I can’t pretend I don’t have a disability. It’s unfair to everyone in my life to let them assume that I’m fine and don’t need help then get angry with them when they don’t meet my needs.
The very selfish point of this diary is me sharing with you. It is me being vulnerable. It is me disavowing others’ assumptions. What is invisible about me will remain so unless I take that leap of faith and share myself, warts and all. It is me making a decision to be visible. And hopefully, it is me finding the courage to admit to myself and others that yes I have a disability and yes it sucks and yes I can function and yes my life is good and yes I go on.
If you’ve read this far, thanks! I will be seeing a specialist ENT in September and looking into a BAHA device (bone conduction hearing). I’m going to get my cane back out and use it. I’m going to ask for help. I’m going to let others in.
juslikagrzly
Edited to add a link to some more information from the University of Maryland Hearing and Balance center.
http://www.umm.edu/...
and some information from the same website on tinnitus.
Subjective Tinnitus
What Is It?
Most tinnitus is heard only by the patient. There are many potential causes of this type of tinnitus. The inner ear, hearing nerve, and brain are very delicate and may be injured by one or more of several different mechanisms including age, genetic and hereditary disease, infection, allergy, inflammation, tumors, metabolic problems such as diabetes or low- or high-thyroid, loud noise, prescription and over-the-counter medications, nicotine, and -- last but not at all least -- stress and fatigue.
Why does it Make Me Feel So Bad?
Most people with tinnitus are not bothered by it. But for the 20 percent that are, it can be significantly disruptive to one's work and family life. Because tinnitus can stimulate the centers of the brain responsible for emotion, some patients experience significant anxiety, depression, irritability and other strong emotional responses.
The hearing system and emotion centers of the brain are intimately linked to the autonomic nervous system. The autonomic nervous system controls all the functions of our body, and performs most functions automatically, beyond conscious control. Because it is closely linked to the emotion center, certain emotions result in physical changes in the body; for example, anger can increase the rate of heartbeat. It is responsible for the "fight or flight" reaction, the reaction that prepares the body to react to danger. It is this response that makes the hairs stand up, pupils of the eye dilate, the respiratory rate increase, and blood drain out of the face as it is shunted to muscles of the arms and legs. The autonomic reaction to tinnitus often results in problems with sleep, inability to pay attention to issues other than tinnitus, a high level of reactiveness, and suppression of positive emotions.
Edit redux: Link to the Kosability diary just posted. Read and recommend!
http://www.dailykos.com/...