Friday, September 30, 2011

Feeling Helpless

I used to think that the worst feeling in the world was when you think you have to sneeze and then don't. I've recently come to find out, that's not the case.

Yesterday was laundry day. I loaded up the hamper and headed down to the laundry room. The washers in the laundry room are side-load, so you have take care when loading them or everything will just tumble out onto the floor. So careful not to drop anything, I bent over the hamper grabbing armfuls of clothing and shoved it in, kind of poking my head inside to push the clothing all the way to the back of the machine.

I started the laundry and went back up to the apartment. Aaron set out hummus and flat bread and loaded up an episode of Doctor Who on the 360. I sat on the floor drawing windows on a box for Neelix with a Sharpie when I suddenly realized: I cannot hear the Doctor Who theme. That's when it finally dawned on me. My hearing aid was gone! I was wearing it before doing the laundry...

I sprang up and ran out of the apartment, down the stairs and sprinted to the laundry room only to recall a very important fact. The public washing machines lock once started. Even if you unplug them, there is no way to open the machine until the cycle has completed. Why? I don't know. Maybe they're trying to prevent people from stealing dirty laundry? I did not know that was an issue.

I go back to the apartment looking at the ground closely, retracing my steps just in case, as I go. Once I'm back inside I reveal to Aaron what is going on, since I kid of ran off without saying anything before. We search the house together in the slight hope that perhaps it is just under a pillow, or on a counter somewhere. It isn't though. I wait out the remaining cycle time and sure enough, when I open the washing machine there it is.

Now, you may be wondering, "You did not notice something falling out of your ear?" The answer to that is, no. At first, surely, you'd notice because at first wearing a hearing aid for anything longer than thirty minutes is painful. But the more you want to hear, the longer you wear it. Over time you grow accustomed to wearing a hearing aid much like you grow accustomed to wearing a pair of glasses. To the point where you don't even realize it is there. Not to mention there's not much to hear in the laundry room when you're the only person present. The sound of a washing machine is indistinguishable to me from background noise.

I throw the clothes into the drier, because why not, I'm already there? Then I go back up. As I'm walking I'm looking at my hearing aid, checking to see if it's been overtly damaged in any way aside from being soaked. I notice that one of the little plastic covers over the microphone is chipped, but that's just aesthetics. When I open the battery compartment to withdraw the battery, I see that the battery is not in the door where it is meant to be held. It has been pushed into the inner compartment of the hearing aid, where all of the tiny hair-like wires reside. This is bad for two obvious reasons. The first being that getting something out from where it isn't supposed to be is never easy. The second being that the insides of a hearing aid are extremely delicate, something forcibly crammed in there could easily have broken it.

Back inside, Aaron manages to free the battery from the inner part of the hearing aid like a hero, but it's still drenched. Before turning it on it should be allowed to dry out completely, like any other electronic that's been exposed to water. So I open it up and set it on my desk. Several hours later it still isn't working. I'm instructed by three separate people to insert it in uncooked rice. So at current my hearing aid is sitting in the closet in a glass of rice.

It all seems ridiculous and perhaps a little entertaining until you take into consideration one thing: how horribly difficult it is to get insurance approval for medical devices. Back in 2007 it took nearly eight months for my health insurance to approve my hearing aid, even though it was deemed medically necessary. Then it took an additional several months for them to issue the damned thing. And health insurance in this country has only gotten worse since then.

My case went through quick, in 2007 because my situation was deemed an emergency. Since I had no preparation for the hearing loss. I quite literally woke up deaf. For those of you new to my blog: yeah, that happens. With the amount of time that has passed, the foot dragging is only going to be worse because of the long amount of time in which I've supposedly had to adjust. But you never really adjust to losing a sense. You cope. That's the extent of it.

I thought I had pretty much gotten over my loss until this happened and suddenly I was 'that girl' all over again. Able to function one day and completely without sound the next. Yes, I can lip read, but that is very difficult without consonant sounds to guide you. Lip reading is not at all how the media portrays it on television shows and movies. Unless you know the person speaking to you, personally, what they're saying is entirely up for wild interpretation. Take this for example. Yeah, that is the problem you run into when trying to read lips without any cues whatsoever.

Even with consonant cues provided by my hearing aid, when dealing with strangers it's still difficult to interpret what point they're trying to make. Without any cues it's impossible to tell what a stranger is saying now. Other things I can no longer do as of yesterday? I cannot have weekly telephone conversations with my family back east. I can't even hold a reliable conversation with Aaron. I cannot watch Netflix on the 360 (no subtitles). I cannot enjoy youtube videos. I can't play any video games reliant on voice acting. I cannot hear myself laugh. I also have no environmental awareness. Which makes me twice as likely to be hit by a car, or a train -- or eaten by a tiger, if tigers lived around here.

Add in the difficulty even seeing a doctor capable of putting forward a request to insurance for another hearing aid and you see how dire this situation is. Your primary care physician isn't in a position to order that type of medical device. You need to see an audiologist. Even if you've already seen one in the past and all your information is on file. Insurance seems to think they will save money on issuing medical devices if they force you to see another specialist before hand. Why?  I don't know. It's a stupid concept probably thought up by a stupid person.

Getting your insurance to approve you to see a specialist these days is a nightmare. Like they're trying to prevent having to issue medical devices to people by not letting them in to see the person who can request the devices. Just as an example, I've needed to get in to see my neurologist for months now and it still hasn't been approved yet. They've actually denied the appointment twice -- with no reason whatsoever. As in, I speak with my insurance company about why it wasn't approved and there is no reason listed in my file. They just blindly said no. They just saw the pending request, denied it and went on with their day.

In the absolute best case scenario, I am miraculously approved in under two months time to see an audiologist. After that I'm finally approved in under a year's time for a new hearing aid. After that it'll be about five months before I receive my hearing aid. That's over a year without any sound whatsoever! It's unacceptable.

Then there are the arbitrary rules they place on medical devices. Such as only being granted a certain amount in under a certain time span. For instance I can only get one pair of glasses every ten years. Even if the ones I have now spontaneously combust while on my face, I cannot have them replaced by my insurance until 2019. If anything happens to my glasses before that, I have to replace them myself.

It is essentially the same thing with hearing aids only they also do not cover the repair of a hearing aids at all. Paying out of pocket for hearing aid repair is $300 to start. Just to send it in. According to horror stories on the internet, Phonak will often take your money for repairs and your hearing aid, only to tell you you need to buy a new hearing aid if you old one was over two years of age. That's an additional $1000-$2000 on top of the $300 you paid to start out. That's essentially like telling me, "If you want to hear any time in the foreseeable future, you will be living in a box next month. Enjoy!"

Capitalism sucks when you're sick or disabled. I'm all for working for what you want, but working for what you need is getting a little out of hand.

Luckily, just as I was on the brink of freaking out and becoming some kind of feral person who eats their own hair and hordes pennies, my friend Sean reminded me that he's an engineer and may be able to fix it. Just for the cost of parts, which incidentally is much much less than $300. Failing that, my only option is buying the biggest, cheapest hearing aid I can find until we can save up for one that's less clunky and obtuse.

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