Wednesday, May 9, 2012

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.