What do I expect?

First I want to answer a comment in a main post since the commenter has asked twice now:

The commenter had asked: when I do get hearing aids will I cover them with my hair? Why?

I thought I answered that in a comment, but...

No I won't intentionally cover them. Why? Because I'm not fussed about being seen with hearing aids. Of course I have long hair and it may fall such that it lays on top of a HA but I'm not going to go out of my way to conseal any HA I eventually receive.

And now onto the 'meat' of the post...

In email correspondance the topic of [my] acceptance into the Deaf community came up.

I thought that it would be difficult for me to be accepted even appearing to be a late-deafened person because I didn't grow up Deaf. That is my main concern. Obviously I'll keep the fact that I wanted to become deaf quiet (no pun intended) since it isn't worth the hassle to be 'out'.

Will I eventually be accepted into the community? Probably. Is it a major concern? No, not really.

It would be nice to converse with Deaf people but at the same time I'd be happy to stay at home and be deaf here than go outside at all and show or tell the world. I'm a shy person and I don't socialise much in person (so it's kind of ironic that I would voluntarily make that process more difficult, eh?) but I'm happy with that; I'm happy with socialising on the net.

Acceptance into a community to which you belong is always nice but I have to be realistic: I didn't grow up Deaf and I will probably not be as fluent with BSL like the locals are. I'll always be a foreigner both literally and figuratively. It doesn't bother me since this is something that needs to be done irregardless of social impact (albeit I worry about Casey's reaction).

The things we "trade"

So people in my situation seem to be willing to do a hell of a lot to reach our goals. Be it deafness, blindness, paralysis or amputation of one or more limbs: walking, music, reading a classic print book.

Why do we do it? It'll sound cliché to say "because we need to" but when all the crap is boiled away that's precisely what it is. Let's look at this from another point of view:

John, an 18 year old High School student and his 18 year old girlfriend-from-Middle School have just graduated from Springfield High School. John has a sports scholarship to a big baseball school on the West Coast of America whereas his girlfriend wants to go to Brown in Rhode Island, thousands of miles away. All his life John has wanted nothing more to marry his girl and play baseball. The scholarship is his ticket since his family isn't well-to-do. John makes the hard decision to marry his girl. He needs her love more than baseball. In a sense he's traded his dream to play baseball for love.
A weak analogy but still. Everyone is willing to give things up for something more important. It just so happens that for those of us who feel desires to be deaf, or blind, or paralysed or what-have-you we're willing to trade a hell of a lot more than John.

Personally I find Beethoven's 9th Symphony in D minor, opus 125 to be the world's finest example of music. I'd give it up to achieve my goal. Why? Because I value deafness more than the greatest piece of music anyone on this planet has ever created. Granted with hearing aids I'd still be able to get some enjoyment from his masterpiece - remember: profound deafness is not my goal at the moment.

Let's look at the male-to-female transsexual as a case to compare against:

She gives up reproductive abilities, male privelege, risks losing her job, family, and friends. And for what? Because for her it's worth losing everything to be herself.

One more thing I give up with hearing loss: advanced notice that Casey is approaching behind me. Oops!! As I was composing this entry with great big letters at the top of the screen reading [MAKEMEDEAF], being the title of my blog, sie came up behind me and tapped me on the shoulder shattering the few hours I thought I had to compose this entry. You see, I'm almost always listening to music to block out external noise. Sie didn't anything but I wonder how long sie was behind me and reading...

...and it'd still be worth it.

Hearing Aids: NHS or Private?

So I've set my goals and I know what I want. The only question that remains is how I go about achieving those goals. The topic of this post is hearing aids: NHS or Private?

Suitable candidates for HAs are offered them from the NHS. However they're all "flesh tone" BTEs. I have a problem with flesh tone/beige! I'm white and so those BTEs would have been designed to blend in with my own skin. Why would I want them to blend in? I certainly would not be ashamed to wear hearing aids! In fact I would go so far as to pay several thousand pounds (perhaps £1000 per ear) for a privately dispensed aid that I could have made with a specific coloured case.

I'm a fan of the transparent purple ones from Phonak.

The NHS buys their aids in bulk so they can get a bulk discount. The way I feel about socialised medicine (and socialism in general) is that those who have the means should pay for their own devices such as hearing aids. Leave the NHS ones for those that really need assistance with them!

Soon I will have the means (and will) to pay £1000/ear to get a personalised aid. And that's the real goal: personalisation!! People build houses because they can personalise them. People buy wheelchairs and tailor them to their own preferences (including frame colour). Why should a hearing aid be any different?

Not to mention that the NHS is currently backlogged up to four years in some areas of the country for hearing aids. I like the idea of removing some of the burden from the NHS and having the aids 'right now' (as in a few weeks as opposed to years).

Why BTEs and not some other style of aid? I like the way BTEs look and they are often more powerful and capable to higher degrees of hearing loss (which doesn't mean they can't be used for mild loss).

Aestetics, socialism, and "want it right now"-ism. That's the name of the game.

A sort of double standard

It should be no surprise that I post to various Deaf/HOH forums around the net (obviously not giving away my 'secret'). I did a google search for 'deaf wannabe' and similar terms and we're (deaf/hoh-wannabe/pretender) not widely accepted in the Deaf community.

In the Deaf community there are many people that are very happy to be deaf. I can completely understand their sentiment. ;-)

There are those in the Deaf community that take offence that those of us who wish to be deaf/hard of hearing. Perhaps they feel it is an intrusion of a hearing person into the "Deaf culture." Much in the same way the wacko Janice Raymond believed transwomen are trying to invade women's space.

I wonder what ratio of people that are happy to be deaf (non DW) accept DW people into their community.

Frankly it doesn't matter to me. I seek no one's approval (except perhaps for Casey's). Before I met Casey I certainly had these wishes and would have been happy to live my own life as a deaf (little 'd') person using sign language and hearing aids to regulate acute hearing.

Since I've met Casey, however, nothing has really changed. I love communicating with hir. Sie is very intelligent and my desire to be deaf/hoh certainly doesn't mean I wish to cease communiating with hir. Incidentally this is one thing I worry that sie will assume.

In short the double standard seems to be: "It's okay for us to enjoy our deafness since it wasn't a choice for us but since you want to be deaf it isn't okay." I stress that not everyone shares that double standard but it is something I have observed in SOME MEMBERS of the Deaf community.

Marie says "I" and ponders coming out

So I've been told that by posting in the third person it is distracting to those that chose to read my blog. I could take the stand that it's "my blog and you can piss off if you don't like it" but I started this blog in public for a reason so I may as well bow to easy-to-do requests from the public. ;)

And now on to the main reason of making this post: the topic of coming out.

I have one person I really care to come out to: my partner Casey. Sie means very much to me and it would hurt me if sie couldn't understand or cope with my desire to be (moderate/severely) deaf.

I am in a strange place with coming out because I don't know what is the cause of my current loss. It could be that I may, within 5 years, reach my goal by virtue of some disease. In that case it doesn't make much sense to tell Casey that I want to be deaf.

Of course it could be that where I am now is the "end of the road" for whatever has caused my current hearing loss and to progress further requires my intervention.

I will know better as this year progresses since I see the ENT in a couple of weeks he may be able to help figure out what's going on.

With waiting, however, comes a snag... if I wait and I don't tell Casey I could be missing out on hir complete support and willingness to stand by and let me intentionally damage my hearing by horn (or something).

But if I let the secret out and sie's not able to understand (or let me damage my hearing intentionally) sie could narc on me and that could seriously hamper my HA acquiring goals...

Casey has already said sie's willing to learn BSL with me since sie knows that I prefer nonverbal communication. It's also more practical since we can communicate "in secret", so to speak, around other people as well as in noisy situations!

As always timing is everything. As much as I hate to keep the secret from hir I think the best thing to do is to wait until I see the ENT and get a handle on what's going on and where it's likely to go.

The virtues of fibbing

So Marie has posted before about how she has a hearing test in February. She's also stated that she wishes to acquire hearing aids. In this post Marie will clarify the desire she feels for hearing aids.

One aspect of hearing aids that appeals to Marie is that she sees them as validation of herself. It isn't easy to state but she can only make an analogy to a transgender person: even though they may be "in the closet" they still buy female clothes as validation of their female identity. Similarly having hearing aids is a validation of Marie's (this is going to sound 'odd') deaf/HOH identity.

Marie will leave the true psychology of it all to a shrink. Like many things in this blog this makes sense to Marie even if she has a hard time conveying it in writing.

And so she moves into the virtues of fibbing.

Marie has a strong interest in otology and wants an answer for why her hearing is already and on its own declining. Along with various balance issues it may be an indication of a medical condition that would take precidence over Marie's dw-wishes. People usually don't have hearing loss in their mid-twenties without something being wrong.

Of course if Marie were to fib during the audiogram and make it appear that her hearing is worse than it is she could be prescribed a pair of hearing aids which would go a long way in calming Marie. There are a few things that would come as side effects: For example if Marie appears to have a hearing loss of -40 dB across the board she would have to keep that pretense with the ENT and dispensor. She would in effect begin to lead a double life.

It is also not easy to fib during an audiogram. If the target is -40 dB Marie would have to be able to tell the difference between, say, a 50 decibel sound and a 35 decibel sound and a 40 decibel sound. Having an irregular audiogram could give Marie away and put a note in her file that may make it impossible for her to ever acquire hearing aids (even if/when she genuinely needed them).

Marie has wrestled with the decision for months. It isn't easy! Being honest means that hearing aids are further away - perhaps by years - but she would be able to have an understanding of her true hearing capabilities. Knowing where her hearing is versus where she wants it to be are important to Marie; truthful audiograms are a milestone towards her goal.

It comes down to this: Is Marie a pretender or a wannabe? There's a distinct difference. Marie has tried to lead a truthful life (yeah yeah, she'll tell Casey about this when the time is right. But she wouldn't deny it if Casey asked directly!) so she sees herself pretending to be disingenuous. By remaining a wannabe Marie can remain truthful to herself and still attempt to reach her goals by truthful methods.

This post seems to go back and forth: Marie wants hearing aids sooner rather than later but she also wants to know if her health is at risk based on her vertigo/balance and current hearing problems. If it seems like Marie is indecisive it's because she is! It's unlikely that she'll decide what to do long in advance of her hearing test in February and it's likely to be decided on the spot as her name is called to see the ENT.

Why?

Marie had a comment to her last post asking why she wanted to be deaf. The question was:

"Do you mind if I ask why you want to be deaf? What is there about hearing aids that seems to me to be the "turn-on", if you like, that makes you want to wear them?"

To Marie she sees no sexual turn-on related to heraing aids. Rather she sees them as a device to regulate when she hears. Bear in mind that Marie doesn't want to be completely deaf (although she would certainly adapt to it). It's easiest to say that Marie wishes to have "selective hearing."

To say exactly "why" Marie wishes to have such a hearing loss would take a long time for her to explain properly. With such a taboo subject it's very important to explain one's self or they risk setting a bad impression.

For now I think it is best to urge those that are interested to take this as a start of Marie's explanation (she feels no need to explain herself to anyone but it is helpful for her to understand these weird urges):

For many years now Marie has had an urge to make things quiet. Perhaps it is her constant tinnitus or perhaps her exceptional hearing: she hears televisions (15KHz) and those annoying >20KHz ringtones. She heard watches, dripping water in another room, people breathing and laughing - everything. Constantly hearing every little noise can drive someone to drastic measures. When these sounds (which Marie has no control over - she hears them always) always happen it makes Marie stressed and can make her 'shut down'. That isn't good.

One could say that she had "too much of a good thing". Perhaps she's being too mellodramatic but that's the world as she sees it: Constant noises from everywhere. They disrupt her sleep and concentration.

The ironic thing is that if she does achieve her goal her tinnitus will not go away and that will be more present.

Marie has experimented with earplugs and has found them to be very successful. The first time she used them she only used cheap foam ones with no more than 25dB attenuation.

The relative quiet was glorious. Marie knew instantly that this is what she desired.

Getting there the easy way?

As someone that wants to have more than a little hearing loss Marie desperately clings to any hearing loss (induced or 'natural') with a great deal of hope.

And so Marie notes that she does have a slight (mostly low frequency) hearing loss. Marie's partner (whom she will call 'Casey' and use gender neutral ponouns so as to not reveal hir gender) works in an office and hir coworkers are male. One day Marie went to Casey's office as part of that day's plan. Marie noticed that she had a very difficult time understanding her partner's male coworkers.

Backing up before that day Marie and her partner flew to America (they live in the UK) and at the airport Marie couldn't understand the man asking security questions ("Has Marie packed her bags? Has Marie been given anything to carry by strangers?" and so forth). Luckily Casey was there with her to answer the questions! After they passed through security Casey told Marie that "Maybe you need hearing aids!!" Marie admits that she had trouble not jumping up and saying "Yes! Marie knows she wants hearing aids" but she used that as an 'in' to start pursuing her goal of hearing aids.

Marie's partner Casey does not know of Marie's wishes to be deaf.

But the thing is Marie genuinely does have hearing issues! She doesn't know the cause of it but she is very curious about it as otology is one of her more obsessive interests.

In December Marie had a private hearing test at a local HA dispenser. She did the test honestly even though fibbing would have put her closer to her goal of acquiring hearing aids. The test indicated the aforementioned hearing loss, but the dispenser wouldn't provide Marie with a copy of the audiogram (Marie didn't actually ask because she was certain the man would figure out that she was deaf wannabe).

Concurrent to that Marie's GP made a referral for her to have her hearing tested by the NHS. She thought that the time to get an appointment would take many months but it turns out that from the time she sought a referral to the time of her scheduled hearing test was only about four months in total.

So now Marie has a hearing test scheduled with the NHS. She's hoping that the ENT will be able to tell her why she has LFHL (low frequency hearing loss) and why she feels dizzy (Marie's GP prescribed SERC for her dizziness).

Marie's research indicates that there are numerous possible diseases such as Ménière's disease, otosclerosis, labrynthitis, and even multiple sclerosis (which her friend Robin might be jealous of). Marie doesn't really care what the cause is (although she's scared of MS!) as long as the ENT will explain to her in detail how it's affecting her.

Marie's current hypothesis regarding her hearing loss is that after she moved to the UK she either contracted an environemntal allergy or an existing one "activated". This allergy gave her a middle ear infection for the Spring months and the fluid buildup became infected (e.g., acute OM) and the bacteria began attacking her ossicles. The repeated scaring to her ossicles is impairing their ability to transfer sound. Effectively otosclerosis. However otosclerosis is a conductive loss and Marie seems to recall that her LFHL was mostly sensorineural (she can't recall the plotting of the conductive graph).

There is also room for Ménière's disease, which would explain the balance issues and LFHL.

It's hard not to speculate but Marie has told herself that she will not jump to conclusions and tell herself that she definitely has Ménière's since it isn't good to get her hopes up (if one can be happy about progressing to severe balance disorder). She wants to let the doctors figure out what's going on with her hearing loss; she hopes that she won't have to induce hearing loss with high power horns and personal security devices. She wants to lose her hearing passively as it's easier to explain to family and doctors.

Marie will post soon about whether or not to fib on February's hearing test since she hasn't decided if she wants to look at her current auditory issues or get hearing aids soon!

Hello

This is a blog about a young woman in her mid 20s that wants to

have a moderate/severe hearing loss. Her name isn't Marie even though that is what she uses to identify herself with.

Unfortunately there aren't any easy to select the level of hearing loss or to find a medical doctor to help achieve it. Doctors aren't in the habit of "harming" people, even if it's what they desire. This is a problem for Marie since she doesn't want to be completely deaf but rather she wants to have a specific level of hearing loss. The reason for this is that she wants normal sounds to be inaudible except when being amplified with a hearing aid. She doesn't want to be deaf because she still likes to communicate verbally (it is easier to communicate complex ideas) even though at times she finds it difficult to speak, the reason for this may be related to her being on the autistic spectrum.

Marie also still finds some audible things to be worth listening to such as music and live television (she notes that live captions are poor quality). Her preferred method of communication is actually nonverbally.

In this blog Marie will post about her interests in otology, hearing test results, methods of damaging her hearing, and her quest to acquire behind the ear (BTE) hearing aids.

Currently Marie is living with a mild hearing loss in low frequencies of approximately -20 dBSPL and and is awaiting a hearing test (which she will post about) that's in the middle of February.