Hearing Problems: The Invisible Disability

When you imagine someone with a disability, what do you see? You might see someone in a wheelchair or using a walker. You might see someone with a guide dog or dark-tinted sunglasses to protect their eyes. You might see someone moving about in a way you are not used to. All of these clues tell you that this person has difficulty in some way.

Any decent human being would be respectful of these disabilities. You might step out of the way for someone with a mobility disability, or open the door for them. You might be very patient with a person who has an obvious mental disability. You might even take your time to lead someone who is obviously blind to where they need to be.

Yet, there are so many disabilities that cannot be seen -- that aren't readily apparent for you to interpret. As a person with an invisible disability, I can tell you that it is not easy.

When I was a baby, I would not respond to anything. I wouldn't talk, and I wouldn't listen. Most of the people my parents encountered thought I had a mental disability... and my parents were inclined to believe this too... until they realized that my inner ears were clogged. I was given a very simple operation to 'insert' tubes into my eardrums to allow the excess fluid to drain. With that done, I could now hear. I began to speak and to interact with my surroundings instantly. A few years later, the tubes were removed through a painful procedure where my doctor stuck an instrument into my ear canal and yanked them out -- while I was awake! That was a pretty traumatic experience.

Typically, a person who has once had 'tubes' will have a healed eardrum. Eardrums are incredibly resilient despite how delicate they are. Most of the time, they will heal without much scarring. With this sort of operation, there is apparently a 1 in 2,000 chance that the eardrums will not heal correctly. I was the unlucky winner of that lottery. My left eardrum did not heal properly, and despite an operation to try to coax it into the right direction, I still have a hole there.

What does this hole mean? Well, I've had to wear an earplug in my left ear for as long as I can remember... and not one of those store-bought kinds. It's an earplug that my doctor personally molded for MY ear alone. I won't just get a 'bad ear infection' if I get a drop of water in there... no, it will be an ear infection so bad that it WILL cause me to go deaf. So, I am very careful. Every time I shower and every time I go into the pool or the ocean, I wear my earplug. I've grown used to it and it is just life for me at this point. Other people see it and think it's weird, but I suppose I can equate it to wearing glasses; if you don't wear glasses, they seem odd and foreign to you... but if you do, it's second nature. I equate it to this because I only started wearing glasses when I was 18.

After the first failed operation to try to fix the hole in my eardrum, my doctor suggested another one. This one was a bit more invasive and involved them literally sewing up my eardrum themselves. The problem with this is that there is also a chance of permanent deafness with this procedure, and I opted not to go for it. The problem with my hesitance is the fact that without the operation, I will surely go deaf in this ear over time.

As it is, I have already lost some hearing in my ears. I get regular hearing tests to 'check up' on it and it is interesting how my ears have compensated. Where one ear falters, another ear picks up. My left ear is weaker in some frequencies and my right ear is stronger as a result. According to the hearing tests, my hearing is as close to normal as one would hope it could be... But the thing about hearing tests is... they are necessarily inaccurate. Let me tell you why.

When you get a hearing test, you are sat in a sound-proof room that is so airtight that your heartbeat is amplified louder than you will ever hear it in your life. They play soft noises in a quiet room that are difficult to hear above your heart beating. My problem has never been in quiet rooms... it has been in crowds! I hate going to the bar, or walking on a busy street, or sitting at a large table at a restaurant. This is where I have my hearing trouble, and they never test for this. My hearing trouble is slowly getting worse and I will inevitably one day need some sort of hearing aid. It doesn't help that hearing difficulties during old age run in the family already.

My disability is invisible because people can't see it. They can't accommodate it unless I specifically tell them, and even when I do, people are inclined to forget. I've had people that I've dated grow frustrated with me because I can't hear them on a busy street. I don't necessarily think it's because they're heartless; I think it's because they aren't constantly 'reminded' with a visual cue. I don't have a sign above my head that says my hearing sucks. I don't have a guide dog or a walker. I also don't wear a hearing aid... but if I did, they are now so small that people wouldn't even notice them, not to mention that they would be covered by my hair most of the time anyway.

I walk the fine line between being majorly inconvenienced and needing outside assistance. Over time, I will be forced into the latter category, which I am afraid of. One of my hairdressers went deaf in one of her ears due to genetics, and she once mentioned to me her own opinion on the subject. Her hearing is much worse than mine and still... people do not treat her as they should. Even with the explanation of, 'my hearing is bad', people are rude. I work with another woman who wears hearing aids and explains to people that her hearing is bad, but they are still frustrated.

There will always be people who will be inconsiderate with all disabilities, but I do think the visual cues serve as an important reminder that those of us with hearing difficulty simply don't have. Difficulty hearing isn't the only invisible disability. There are so many others. There are mental illnesses, depression, cognitive issues or even physical problems inside the body. These could range from something serious like an autoimmune disease or diabetes to something that isn't life-threatening like IBS. It's hard to be considerate of people when you can't openly SEE what's wrong... but I ask all of you -- please try to remember what someone's disability is, even if you can't always see it. Having to constantly remind you is not only frustrating, but it also makes me feel like I am being a nag, too.

Acknowledging Strengths and Weaknesses

When I was in grade school, I never did my homework. I'm not entirely sure why this was. Yes, it was boring, and yes, I had trouble concentrating... but, what kid likes doing homework anyway? I certainly wasn't the only one. I remember seeing my fellow classmates in middle school and high school hurriedly copying their friends' homework right before class started, or attempting to fill in all of the answers before the teacher could notice, if only to avoid an incomplete. Others would tell the teacher they had forgotten it at home, or some other excuse that was a bit more creative than 'my pet ate it'. I wasn't like that. I was far too proud. If I didn't do my homework, I simply said I didn't do my homework. My teacher would often shake his or her head and move on, showing their disapproval.

This perplexed my parents. They knew I wasn't dumb, and I wasn't incredibly rebellious. I was very polite to my teachers, and usually did well on tests; I knew the material, and proved it time and time again. Yet, if I didn't do my homework, I lost a percentage off my grade. An A would become a B (or even a C if the teacher was very strict). If I didn't receive perfect grades on the tests, my grades would be even lower. This would frighten other students into submission. "You won't get into college without a good GPA," they'd say. I simply didn't care about these threats. I was stubborn, and intent on proving that homework wasn't needed to excel.

Growing up, I had a sister that was (and still is...) four and a half years older than me. She was the mark of academic perfection in my household. She was incredibly studious, part of the school's 'quiz bowl' team, and known by many of my school's teachers. By the time I reached high school, I was unwillingly placed within her shadow by both my teachers and my parents. This is probably one of the reasons I cared even less about doing my homework. Now, this isn't a pity party. I certainly didn't feel less adequate because of this. It simply explains why I developed the attitude I did.

All throughout elementary school, middle school, and high school, my teachers described me as having 'a lot of potential'. One of my teachers aptly wrote, "She needs to learn what she's told to do instead of what she feels like doing." When I read this, almost twenty years later, I couldn't help but laugh.

In third grade, I was placed into what was then called an 'Enrichment Program'. In some schools, this is also known as a 'Gifted Program'. Basically, if you score incredibly well on standardized tests, or you have a high IQ, you are considered 'gifted' and placed in a special class that discusses elevated topics. As an example, I wrote a report on Czechoslovakia in 3rd grade. My teacher really didn't like me, and I wasn't the most focused student. I was kicked out of enrichment for misbehaving, a story I still tell people to this day. It's hilarious that I could be so misbehaved that I would get kicked out of a program for 'gifted' students. (I have been told by other friends that have been part of 'gifted' programs that there were rules against being kicked out in their school. I guess I wasn't that lucky.)

The pattern of not doing homework continued until, I believe, I was in 10th grade, when my mother had had enough and wanted to find out why I wasn't doing my homework. "Take her to a therapist," they said. "Maybe they'll be able to explain why." Now, I admit that I have my own fair share of ghosts from the past... and I have sat and reflected on these ghosts for a long time. Yet, I cannot connect these ghosts to my unwillingness to do homework, not even in the slightest bit... even now. So, when I went to this therapist, she couldn't figure it out either. Like many other professionals at the time, she decided to test me for ADD (Attention Deficit Disorder).

What did this test entail? Well, she sat me in a room with an incredibly old computer (so old that I don't even think it had a proper OS...). On it was a computer program to test my attention span. The first test was visual. If I saw a little white box appear on the top of the screen, I pressed a hand-held button. If it appeared on the bottom of the screen, I didn't. She judged my response time as well as my accuracy. The next test was similar, except it was with sound only. If I heard a high pitch, I pressed the button. If I heard a low pitch, I did not. (I'm not sure if it was the other way around, but you get the idea). All in all, the tests took what seemed like an hour. In reality, it may have been thirty minutes. What was determined was that I was accurate (great!) but my response time slowed over time. It was determined that I had ADD. This still didn't explain my lack of desire to do homework, but at least it was a step in the right direction. (As far as this test is concerned... I'm still convinced that any normal person would get bored when asked to perform the same tedious task over and over again...)

When I was younger, and less controlled, teachers suggested I be put on Ritalin (the go-to ADD medication at the time), but I said no. I didn't want to be anything different from who I was. I didn't think I had a problem (who does)? So when I was officially diagnosed, it was brought up again. Should I be medicated? Over the years, I have had friends that were for this exact reason, but I still said no. I wanted to overcome it in my own way.

And so many years of me not doing my homework continued. Even up until I graduated high school, I didn't do my homework. My parents would protest, but I would always come up with a lie. I'd say I didn't have any, or I did it earlier, and they were none the wiser. (They weren't stupid or neglectful, either. I was just clever and persistent.) Because I was ambitious in other areas (there were years I had a 9 period day, with no lunch or breaks in between), they were okay with it. I studied multiple foreign languages, continued with music, art, and even dabbled in computer science and drama for a little while. When I was ready to apply to college, my mother advised me to submit a 'medical reason' for my poor grades. She told me to use my ADD diagnosis as an excuse for not having the type of grades that I should have. She also suggested that I specifically cite my standardized test scores as proof that I was capable. Noooooope. Wasn't gonna do that.

So how did I end up at Binghamton University? I'm not going to lie -- I didn't even graduate with a 2.5 GPA (In fact, another therapist I had -- not the same woman from before -- laughed at me and told me I would 'never get into any college' with the GPA I had). I knew people in my HS that had a much higher GPA and did not get into this particular school. Well, the trick here is... I wasn't a straight-from-HS applicant. I was a transfer student, and I transferred from a college that likely only accepted me because I was in the All-State Women's Choir (something I worked very hard for, thank you very much). I first attended SUNY Potsdam, a state school known for its music education programs. At one point, I wanted to be a music educator. I changed my mind and chose to transfer. Being away from home allowed me to excel in college. I received a 3.5 GPA in my first semester at Potsdam. The adviser for transfer applicants called me up and personally congratulated me on my acceptance. (Okay, perhaps it wasn't that glorious. It was the winter that Ford died and the post office was incredibly backed up as a result. Because I applied during the winter, they had to call me directly to notify me of my acceptance or I likely wouldn't have received my acceptance letter until after the semester began.)

So there I was, a student with ADD, at a university I didn't exactly earn acceptance into. I felt guilty, but my guilt was second to my desire to succeed and prove others wrong (especially that poor excuse for a therapist who told me I would never get into 'any' college). I wanted to succeed in my own way. While at SUNY Potsdam, I fell in love with Sociology. While at Binghamton, I picked up English as a second major. With enough credits to graduate as a junior, I stayed the full four years to graduate on time with two majors, a part-time job, and tons of extra-curricular activities. Yet, how did I get there? Certainly not by doing homework... that's for sure.

It was in college that I realized the 'advantage' to having ADD. It was no longer a 'disorder' or a 'disability' for me. It was simply a different way of functioning. Like how a person with Asperger's Syndrome is incredibly brilliant but not so keen on social cues, I found a way to recognize my own strengths and weaknesses in my 'condition' (that seems to be the most neutral term I can use, here). See, people with ADD are capable of hyperfocusing... that is, focusing on something to such an intent degree that they cannot be easily pulled away from it. My ADD made it hard for me to concentrate on my work, but it also made me capable of hyperfocusing, thus allowing me to sit down and write a 20-page paper in 5 hours. This is my personal record... I once woke up the morning a research paper was due, at 6am, wrote it until 11am (citation page and all), and printed it just in time to turn it in when it was due at noon. I received an A on that paper.

At another point in my college career, I took a class known as "Research Methods." It was required for all Sociology majors. Our final project was to write a research proposal, which was basically a proposal for some sort of experiment or social survey you would like to perform. You didn't actually have to follow through with the framework, but you did need to design it. I wrote mine the day it was due, as usual. Guess what mine was about? ...The social stigma of leaving things to the last minute. I argued that instead of working at the last minute being viewed as a negative trait, it could be viewed as an alternative one. Some people claim to 'work better under pressure'. My survey would gauge the academic success of students who both studied several days before an exam and students who studied only right before an exam, for instance. Ironically, this was written the morning it was due... a silent way for me to prove to myself (and only myself -- I wasn't going to admit this to my professor) that I had a point that needed to be proved. I received an A on that project, too. People wonder how I 'got away with it', but I didn't 'get away' with anything. I put just as much effort into my project as others... just simply in a different way.

This isn't to pat myself on the back. I promise you that I was not the model of perfection, and I certainly did not deserve to be where I was. Yet... it worked for me, and I was able to adapt to my surroundings once I learned to accept both my strengths and my weaknesses. I've been out of college for two years now, and I still see how these differences affect my life. I am distracted easily. My boyfriend (whom I've been with for quite some time) will become frustrated with me because he sometimes feels I don't think what he has to say is important if I lose my focus. I have a steady job that I love, and despite always loving what I do, I sometimes have difficulty focusing there too. Yet, there are other days that I am so pulled into my work that I forget the time and even forget to eat. I won't realize I haven't eaten until it is time to leave (or even well past that), and then I end up skipping a meal because of it (oops!). I suppose that's a real downside...

This is only one example of a condition that has become incredibly stigmatized in modern society (or at least it was for my generation; today, it may be something else). I like to think everything must have its advantages and disadvantages if only you can reflect enough to find them.