Standing at the intersection of Asperger’s / autism & physical disability (or blessing??)

A disability, in itself, can be an advantage.  It can be an innate physiological survival strategy.

In fact, it can be a downright blessing.

Some might think I’ve misplaced my logic today.  I can hear some of the theoretical responses now, and they’re probably varied: “Say what?”

“What on earth is she getting at?”

“Where could she possibly be going with this?”

“When could a disability actually be a blessing?”

“My life is so much more challenging as a disabled person.”

At least, that’s what I would think, if I were my Pre-Asperger’s/Autism-Realization Self.  Besides being on the Asperger’s/autism spectrum, I also have a physical disability.   Today I’m going to talk about it.  Because of the nature of mine, I’ve come to view it in a new light.  And I’m going to talk about that, too.

My disability was, for a long time, a source of depression. In fact, it often made me cry.  Since it’s also progressive (meaning that it will get worse become more significant over time), it’s also been a source of anxiety.  How much worse is it going to get?  I agonized.  A lot.

To throw a little more gasoline on the fire, it’s also an invisible disability.  It doesn’t show on the surface.  And I’m very young to be in the stages that I’m in, so nobody expects it.  As a result of my disability, perfect strangers have treated me with disdain.  They treated me as though I’m “stupid” (please forgive the word; it’s theirs, not mine.  I will never own it.  “They” don’t get to win).

I am losing my hearing.  I first noticed it when I was 21, when I started screwing up words and names, thinking people were calling mine when they were actually trying to get the attention of someone whose name sounded similar to mine.  My head would swivel constantly, concerned that someone was calling my name, and that I was missing it.  I didn’t want to irritate anyone by inadvertently sending them the message that I was ignoring them.

I’m now 39.  This means that I’ve been slowly but surely losing my hearing for probably half of my life (if I first noticed it at 21, then it probably started a while before that).  I assumed that my hearing loss was due to chronic wax buildup (sorry for the gross visual!).  I heard about an ear irrigation kit.  I was excited to try it.  I thought it would solve the problem, and my hearing–and my life–would be restored, back to “normal “.

It didn’t.  It made no difference at all.  The world was still muted.  I still missed words.  I still needed the TV volume to be set at a much higher level than I knew was “normal”.  I still asked people to repeat what they’d said.  My hopes had been destroyed.

I was 30.

Now what?

I panicked.  I sunk.  Not necessarily in that order; the two emotions leapfrogged each other in one gigantic yawning darkness that threatened to swallow me.

The audiology results were even worse than I had expected: moderate-to-severe loss in the bulk of the spectrum, with an apex right in the middle of the range, like a deranged upside down bell curve.

(And, I was still 30.)

No way, I said to myself.  This can’t be happening.

Oh, but yes it could!  My father experienced the same, as had his father.  Well, between working around machines and other loud environments, I had written theirs off as an inevitable effect of their occupations.  I figured that I was in the clear.

But then I learned that my paternal grandfather’s sister had met the same audiological fate…

…and she hadn’t worked around any noise.

Oh shit, I thought. It runs in the family. It’s genetic.

Within a few years, I had qualified for state assistance in the purchase of a set of hearing aids and vibrating alarm clocks that you put under your pillow and other assistive devices.

For that, I had to jump through the understandable hoop of meeting with one of the doctors on the state’s list of approved disability service providers.

By then, I was 33.  I was 33, and getting hearing aids.  And their little storage cases.  And their little batteries.  And their other accessories.

The doctor was curt.  Not the most personable man, but I only had to meet with him once. 

He said the two magic words, the two words that would officially open the door to disability services.

“Yep,” he said, after assessing my degree of hearing loss.  “Permanent and progressive”.

That’s all I needed.  All I needed in order to obtain the devices that would become a part of my life.  And all I needed in order to die a little inside.

I had the ears of a very elderly person, at a very young age.

Within a few years, I could no longer handle the dissonant and inaccurate tones the piano made.  I had perfect pitch in my head, but distorted pitch delivered by my uncooperative ears.  The clashing between what I thought should be and what I actually heard was unbearable.  When several piano-playing sessions ended after a mere few minutes, after which I would shed heartbroken tears, I had finally stopped playing altogether.  Something that I had once loved, cherished, and depended upon as a purpose for living became a lost and neglected pastime.  And indeed, a thing of the past.

And another chunk of me died inside, a little more.

I know that this sounds incredibly ableist.  Please don’t be mad at me.  Please know that that’s simply what I experienced and where I was then, and how I perceived the course of the rest of my life at that time.  Please know that those aren’t my current feelings.  That’s not my current perception, nor position.

Things have changed.

This mystical, monumental change came about as yet another effect of my Asperger’s/autism discovery almost a year ago.

Realizations rolled in, in the form of a series of rapid-fire “a-ha!” moments.

I realized that the volume on the world is turned up too loud by default.  I learned that this was a common culprit behind my chronic irritability and increasing overwhelm.

I put two and two together and realized that that’s why I couldn’t wear my hearing aids for very long without getting inexplicably fatigued and short on patience and resilience–sure signs of neurological overdrive, as my post-doctoral neurology training had taught me.

I remembered what how relieved I was, in the early days of having my hearing aids, when each day came to an end and I could finally take them out and give myself a rest that I couldn’t describe at the time.  I remembered what a revelation it was for me to realize that I actually had more control over my own hearing than most people.  (Although please don’t take this to be any kind of bragging streak; I operate from a combination of a sense of empathy for my fellow Aspie/autistic community who become more easily overloaded by their better hearing and also a sense of wistfulness as I watch one of my significant sensory functions slip away.) 

I had a choice: I could wear my hearing aids…or not.

The choice was mine.

How much of the world did I want to hear?

I could make the call.

And I could change my mind at any time, as often–and as many times–as I wanted.

The audio part of my nervous system was at least partially under my direction.  I held a little more power over my own perception (or the effects of) my own environment than the comparatively helpless souls who had no choice but to be bombarded by their surroundings (ouch!  I feel for my neurosiblings with excellent hearing; I genuinely do!  Who says we lack empathy? 🙂 )

If I wanted to be sure to hear every word, I could put my hearing aids in, and let the world in with them.

If I needed a more dampened state, I could take them out, and turn off the world.  It would be like a calm blanket had settled over mine.

At times, that blanket is very welcome.  At times, it’s actually something I look forward to.

Because I don’t know what I’d do if I had to listen to every faucet drip.

I don’t know how I would fare if I could hear everything going on outside.

I don’t know how I’d survive the grocery store if I could hear every little nuance.

I don’t think I could stand it if I could hear the neighbors in the adjacent apartment/flat through the interior walls.

I’m pretty sure that I wouldn’t be able to concentrate if I could hear talking or other office noise from down the hall.

I’m not sure if I want to hear every dog barking or child playing or baby crying within a wide radius.

I wouldn’t get nearly enough sleep if I could hear every sound that the cats make.

Rather than a source of profound sadness, my hearing loss became an escape hatch, an exit route of relief.  My resilience fuse is a little bit longer because the world is somewhat muted.

I still miss a lot.  I miss my days of playing the piano for hours.  I miss the correct pitches that the keys should play when struck.  The TV volume has only increased over the past few years, and it keeps inching up further, as the state’s doctor’s prophecy comes true.  I have to ask more people to repeat longer phrases more often.  One day I might miss something crucial for survival, like the sirens of an emergency vehicle coming up from behind me while driving down the road, or an assailant sneaking up behind me, closing in to do me harm.  That’s my budding and growing reality.

And I’m constantly having to adjust to a new reality.  As my hearing loss drifts away, new adjustments must be made.  New coping skills must be implemented.  New self-checking strategies must be applied.

But the realization that this phenomenon isn’t all bad is relatively new for me.  Which means that I’m still getting used to that, too.

But given my system’s sensitivity to everything else, this is probably Mother Nature’s way of giving me some kind of break from the din.

Maybe this is just my brain’s way of justifying it logically in order to save me emotionally.  That’s very possible. But I think that the conclusion has merit, that it’s not completely lame or empty.

It might indeed be a psychological strategy to make some kind of peace or sense of a challenging situation, to claim (reclaim?) some sense of power over a situation in which I otherwise feel powerless.

But I think it’s more than that.  I think that my biggest disability may just become a valuable asset.

🙂

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30 Comments

  1. i already posted this on your other entry, but i have thought for some time that charles xavier represents the answer.

    we are *like* a different species expected to conform to whats “normal” in another. our science may prove that we do not differ enough genetically to be a different species– that detail is unimportant. x-men (except for the obvious fact that the characters and images are controlled by a corporation) are an ideal symbol for neurodiversity, and xavier (and the other people he entrusted his school with) are ideal advocates of similar diversity.

    people have this very stupid habit of trying to build the biggest, most important institution to house the greatest breakthroughs in teaching, learning, research, etc. while montessori schools started without so much as buildings– even borrowing church buildings that werent in use on weekdays, etc.

    we need “schools” like this, advocacy like this, people like this, who are first-hand (native) representatives. and an ideal model already exists: (and even answers your question as to whether its a disability or blessing– any blessing that makes you incompatible with an extremely conformist world, is a disability to them- a disease. so the answer depends on who you ask– which is why we need a stronger voice, not a sellout one like “autism speaks… but doesnt advocate.”)

    Liked by 2 people

    1. Omg yes! Yes to ALL of this. You make excellent points! I love how your brain works 😊 I totally think that could be a blog post if you end up starting a blog like this (which I totally encourage you to do, if/when you’re able/willing! This is mostly selfish on my part lol; I’d love to read it!) 😉 But honestly I think it could be really awesome for you, too. But that’s just me; only do it if You feel comfortable and you have the time and stuff ❤️❤️

      Liked by 2 people

  2. having read your post, i now wonder how many hand signals you and your partner share. im sure youve done nothing to document them (which is a mixed good and bad– i wouldnt push you to document them) although that probably means you cant count them either.

    as to whether you have any at all… if i were in your situation (or even your partners) then i would have at least a few. its possible you dont. its also possible youre both fluent in asl https://www.youtube.com/watch?v=C3Ng3OgQnks

    Liked by 2 people

    1. That’s an awesome idea! Thank you for sharing this 😊 Interestingly enough, my partner is legally blind, and so although he can see, he needs stuff like computer screen enlargement software and magnifying glasses and whatnot 😊 So we don’t share hand-signals at this point. But that doesn’t mean we won’t develop any in the future! I’ve often thought about learning ASL anyway, just to be able to communicate in another way, especially when I feel like being nonverbal. 😍❤️💞

      Liked by 2 people

  3. to be honest, my primary involvement is with this community– and right now, primarily through your wonderful posts (i promise its a coincidence that im so fond and i respond to you the most– well, partially. im subscribed to several asd blogs and i do respond to them, although im most COMFORTABLE with and interested in you, so there is a bias there… sue me. other than that? totally impartial.) ❤

    any bias i may have in a persons favor is countered by my fierce opinionated…ness… so theres that at least 🙂 plus i do have my own personal experience to go on. i resonate with your blog because we have that much in common, after all. the short version is that if i setup the blog you speak of, i wouldnt have much to say. these are responses to ideas and community here.

    what about morse code? celine dion is professional mute, and she and her husband communicated through tapping to save her voice. i think her signals were "yes" "no" and "i love you" (1 2 and 3 taps) and they can be auditory one way and visual the other way. one person can tap a noise, the other can wave.

    also you can get marlee matlins attention https://en.wikipedia.org/wiki/Marlee_Matlin (ive always been *extremely* attracted to her. she once met jennifer beals at an airport and they became close friends. personally i think they looked semi-identical to each other back then, and thats partly how they met– wild theory. hard to prove/disprove years later.) by stomping your feet on the floor– she feels the vibrations and looks up so you can sign or she can read lips. just put one foot out and hit the floor with it a couple times. quick and easy way to get her to look at you.

    marlee was at a celebrity roast and someone said they "thought they heard someone clubbing a seal in one of the dressing rooms– but that was just marlee rehearsing!" (vicious, yes? just awful. but you dont get to be a deaf celebrity for years without learning to endure a couple of jokes at a roast.)

    i dont think i will talk you into it, but ive always been genuinely fascinated with the concept of asexuality, knowing almost no one like that (who admits it anyway) and being on pretty much the other end of the spectrum (pan/somewhat hypersexual.)

    im genuinely curious how someone loves an asexual woman, when she is asexual and all. what works? what doesnt. i could research that, but with something that personal id rather find some personal accounts (vetted by someone i know who is willing to be somewhat frank about it.) since i wouldnt ask you directly for such a thing, i can tell you id be very interested in links, from you, to people talking about experiences (or preferences, or likes and dislikes) that are similar to your own. and i wont bring that up again unless you do– the interest is sincere.

    myself– ive got so many friends in 12 step programs (no substance or food addictions myself, though its one of the few places where i can go and not feel judged, and theres really people from every walk of life– plus ive had many alcoholic friends and neighbors over the years) ive asked myself honestly "am i a sex addict?" im 95% certain the answer is no… i lean heavily towards monogamy (having two women cuddling you in public with no verbalizing of what their intentions are with you is extremely confusing– i finally just picked the one i liked more and asked what the deal was– she just wanted to be friends!) (?????) and i can go months (like 6-8) or a year or two if i must.

    i tell people that on a bad year, i have two women (never at once.) on a GOOD year, i have one. (the "joke" or rather word play is that if its a good year, the relationship holds together and theres no room for anyone else romatically.)

    so no, i dont think im an addict. (but i do think like one.)

    as i said in my post, if i could have anything from you in the world, id put my head on your shoulder. i also said id never tell you how much i like you, but obviously that was a lie (well, i honestly thought i would keep it to myself.)

    oh– youve mentioned asexuality a couple times already, or i wouldnt bring it up. and i certainly wont pry. but you know perfectly well how my mind works, as yours is very similar. when you like someone, you want to know EVERYTHING about them. within reason and politely as possible, of course. so anything ive said thats out of line, please do me the very big favor (if you dont mind) of pretending i said nothing– as a rule, even better 🙂 though im thrilled beyond measure that i havent said anything to offend you (that i know of) in the past… that means youre tons of fun to chat with 🙂 but as i said already, there is a *little* bit of bias there. ❤ ❤

    im equally curious how you go about enjoying music. i know you still do, or you probably wouldve mentioned it. im also curious if your hearing loss (if it became more severe) would respond to electronic stimulation of the auditory nerves (a technique i heard of once while dating a speech-language pathology student, who was in fact bi-racial. she had veerrrrry curly hair that was naturally red/brown/blonde combined, and she had freckles ON HER LIPS.)

    and she was a genius too, but sometimes i look back and think half the woman i dated were bipolar 😦 i know being a pain in the ass (me) is a factor always, but some people are a p.i.t.a. their whole lives, with just one woman. ive got to always end up with the conspiracy theorist who comes up a million reasons why im the worst guy in the world– and almost none of it is relevant to either their life, or my actual flaws. thats the "sign" theyre bipolar imo. ive been trying to spot them from farther away– borderline is just like bipolar, except they dont really feel that way, theyre just doing it to piss you off 🙂 of course im oversimplifying, and i know it.

    hey! i talked to my TWO favorite people in the world today. i guess youre the new moon. (darnit! another married one.) but sister is fine too ❤ (always fine.) i dont put people there you know, i find them there. very big difference. the previous moon looked like a tiny audrey hepburn (no really, it was freaky) but we dont really talk anymore. (i know, its sad.)

    the goal of course is to find someone who is all three, like i had after my marriage ended (or before my marriage was marriage, for that matter. or i never wouldve proposed.) the girl i talked to in the "update" of my latest post (the one that mentions texas) was actually sun-girl, but maybe its a little obvious. we dont kiss anymore (i never thought we would) but just to look into her eyes and make her smile. 🙂

    even when i just have a crush on someone, its very intense. i literally shield people from it all the time. i go around looking for someone who doesnt judge it (rare and beautiful– and sun-girl never flinches) and its a little like opening my trench coat at them… except instead of the cap'n, its (ta-da!) my soul. and if they dont squeel and run away with their hands over the sides of their face, i know ive made a friend (for life?) but first! i have to absolutely adore them.

    when i met my wife, i didnt know until she left. when i met my (less literal, just as meaningful) "second wife" as my marriage fell apart, i didnt know until i was running down the stairs the next day to meet her, and we were both incredibly excited to see each other (we didnt know why. we only had one friend in common) and both of us were just like "oh wow! hi!" (why are we completely giddy about this? we are just standing outside on a sidewalk outside a building that is the opposite of special.) ah… love! we moved out of state together. i wouldve never left her 😦

    anyway, dont ask me for a blog, you might get one. you might get a book! be careful what you ask me for, there arent many things i wouldnt be tempted to do for you. ❤ i try to be a gentleman though (or at least play one on tv.) https://makeameme.org/meme/i-dont-often-uj38bf

    seriously, if you hadnt mentioned me writing a blog, i wouldve just piped this text through wc on the command line (ok 1498 words, thats not as bad as i thought– i measure a blog entry in multiples of 500 words and 500 is the blogging equivalent of a "standard drink") and gone "no way!" and never posted it.

    i do that with normal people. with queens and moons and sister-folk, i push my luck a little. but i always (always) care. ❤

    * bow *

    Liked by 2 people

  4. “And all I needed in order to die a little inside.”

    Your post resonated so deeply with me. The frustration over our bodies betraying us in ways that – as you put it – cause these small deaths of spirit. But what most impresses me is the resilience with which you meet these continual challenges. Your spirit rises to view them as blessings, advantages in their own unique way.

    God bless you. You are extraordinary! ❤

    Liked by 3 people

    1. Oh wow, thank you so very much! I teared up a little, from the kindness of your words and the genuineness of your spirit. This might sound a little unusual, but for a few moments I felt your presence beside me.

      I hadn’t consciously thought of myself as extraordinary before 😊 In my mind, for the majority of my life, I just did what I had to do or otherwise naturally did, with what I had to work with, which was a combination of supportive resources/tools and limiting obstacles. But you’ve given me the gentle, loving reminder to give myself permission to give myself a little more credit, to consider myself a little more extraordinary, and to pat myself on the back a little this morning, and for that, I thank you from the deep recesses of my being ❤️

      God bless you as well! As for extraordinary, I think it takes one to know one; translation: the feeling is very mutual 😊💖

      Liked by 2 people

  5. You do highlight one point that I agree with. There’s a calmness when I turn off my hearing aids. I may not be a member of the Asperger community but I am a member of the human race. And one who was born deaf. Not one who experiences “hearing loss”. After all, how can you have hearing loss if you were never born with hearing?

    Yes, as codeinfig mention, a school of thought as opposed to this or that is a valuable asset. For example, as a member of the Deaf community with the capital D, sign language is the primarly language of communication.

    In recent months, I am seeing the use of the term, deaf-centric, and human-centric, perhaps there’s an asperger-centric term as well. As long as there is a mutual understanding a respect for different school of thoughts, all of this is great.

    I do have to admit there is an inherent concern for being excluded when inclusion matters. That’s why I am commenting here because I read your Comment/Reblog page regarding being aligned with neurodiversity paradigm and Asperger’s/Autism acceptance philosophies (Reblog point #1).

    But little by little, as I read what other bloggers have to share regardless of their human condition (what someone might view as a disability, I view as a human condition), I learn more about what, where, who, why, when and how each condition matters.

    As for genetic hearing loss, there are people who do have this trait. It’s a little tough for me to grin and bear the words “hearing loss” and “disability” for the reasons I mentioned before. But I do want you to know that you are right, there are great things about being deaf or hard of hearing. Once people realize this, life changes for the better. Granted there are challenges but those challenges does not mean life is worse.

    Great post. Thanks for teaching me more about your human conditions.

    Liked by 3 people

    1. Thank you so much for your comment! I really appreciate it. I value your insight and I love your term “human conditions” – that is such a wonderful term!! It embodies a gigantic variety without any implied bias. In a human condition, there is no stigma, no feelings of inferiority, no negativity, no elitism, no ableism. The human condition(s) just is/are. Thank *you* for teaching me more about life through your lens! 👏🏼😊💜

      Liked by 2 people

    2. “In recent months, I am seeing the use of the term, deaf-centric, and human-centric, perhaps there’s an asperger-centric term as well. As long as there is a mutual understanding a respect for different school of thoughts, all of this is great.”

      this is very well said. i agree with you very strongly that the desire to be inclusive can fall over and be more exclusive than anything. in fact i cover this in a post called “two unfairs dont make a fair” with regards to the countless coding events for girls. if they allow other participants, thats one thing– but if they exclude genders based on the idea of inclusion for girls, to fight a more subtle exclusion with a more pronounced one– past a certain threshold, i really think its a shame.

      one of the things ive seen covered on this particular blog more than anything else, is the dx vs. self-dx debate/controversy/thing.

      and im totally in favor of a school (or schools) designed to cater to/help/advance people that are on the asd spectrum. in the short run, its difficult to imagine making it so just anyone can go to those schools. but as an ideal, i think it would be better if people could try them and possible go there for school, regardless of dx or self dx, or just thinking “hey! this school seems to have what ive always needed.” that kind of sums up how i feel about inclusion and/or exclusion.

      Liked by 2 people

      1. Great statement, “the desire to be inclusive can fall over and be more exclusive than anything”. That’s where I struggled with for a long time, the different conditions we impose on each other for a variety of reason, whatever the purpose may be. A good example of this is that I am deaf (with a lowercase d) and Deaf (with an uppercase D). The difference being the lowercase d refers to an audiological condition of not hearing, and the uppercase D referring to the cultural condition of using sign language.

        Eventually, I came to a simple conclusion. We are humans. We are not rabbits. We are not robots. We do have conditions but those are human conditions. Not robotic conditions. Not rabbit conditions.

        Now, granted, it’s not that simple. For example, I grew up spending 18 years as the only deaf person in a mainstream school system. It was not easy if you apply just the deaf and hearing condition to the picture. If you take this out of the equation, then I did spend 18 years in a school system with all kinds of human conditions.

        And school only has one condition. Learn.

        Yes, there’s a whole lot more finer points to deal with but life has shown us when we take it all away, the most basic word, human, learn, include, exclude, etc… pretty much covers one condition.

        In fact, what caught my attention to this particular blog is the name of it.

        The silent wave.

        By stripping away the conditions that comes with the word, silent, from a deaf perspective, it created inclusion. Huh. This post certainly is making my brain munch on the food for thought.

        Liked by 2 people

      2. im skeptical at linguistic solutions to real world problems– especially addressing a problem simply by replacing one phrase with another. if the problem really is the phrase, then the solution is obvious.

        but for example, the “autistic person” vs. “person with autism” thing. the latter imo is a pc solution to people who think autism is shameful (i dont, many of us dont.) so “autistic person” is actually part of our identity– its not our entire identity, but if you have a robotic implant you get a choice to identify as a cyborg or not: https://en.wikipedia.org/wiki/Neil_Harbisson

        …on the other hand, yelling “hey, DAVROS!” at a guy in a wheelchair– not really nice.

        as long as there are labels we can affix to ourselves, people are going to like some and hate others. the easiest thing to do (and i think we strongly agree on at least part of this) is to first of all, agree that everyones human– and differences are sometimes worth um, celebrating? understanding? ignoring? really all of these, depending on the situation. and leaving it up to the individual (am i bi, or pan?) makes the most sense in most cases.

        i agree with you that these are “human” issues and requirements nonetheless. sometimes differences are important for awareness/acceptance, other times… the woman who said “i want gay marriage rights– and by ‘gay marriage’ i mean ‘marriage’. i park my car, i dont ‘gay park’ it.” we simply want a world that suits us TOO– not us only. keeping that at the forefront is probably a good way to keep inclusion from being exclusive.

        i love when there are ramps and accessible entrances, sometimes theyre even useful to me (im bipedal, myself. and i frequently use the automatic door buttons for people in wheelchairs, because we should keep making everything more accessible for Everyone.) but i HATE– and this doesnt happen often– i can only think of one building i use that is like this, year after year– when you have to wind back and forth around this long ramp just to get to the door. what if youve got arthritis/me/cfs and have to use a walker on that stupid thing? whos brilliant idea was it to make a ramp-ONLY entrance? (there are several places they could trivially stick another door.)

        now some jerk (and ive dealt with TONS of people in wheelchairs, including my grandmother who was my favorite person in the world– there are jerks in every group of people) might say “hey, suffer! welcome to my world!” no, because thats stupid. we should never make a door thats a pain in the ass to get to/through unless it absolutely HAS to be, because thats a stupid design– and if we start desiging things stupidly to make a point, the stupidity in the world will only get worse. we have all the stupid we need, already– the solution is always less of that, not more of it “on the other side” to “even it out.” ideally, we should always be trying to help each other more.

        Liked by 2 people

    1. Thank you for sharing your thoughts! Even though my situation is different, I can relate by imaginative proxy, and I feel for you! One aspect that slipped my mind is that certain sound ranges get through *too* well, and they’re incredibly overwhelming, piercing, complete overload. This might sound a little ironic, but I think I’m going to pick up a pair of noise-canceling headphones for those very situations. Do you have something similar or take other protective measures? ❤️

      Liked by 2 people

      1. I have tinnitus so I do wonder if I would still hear the constant ringing in my ear even if I’m deaf. I’ve tried foam earplugs and different brands of earphones but it seems I have a very shallow ear canal, they just kept falling out which only increases my frustration. I’ve never tried headphones because I’ve always felt they are bulky and I might get a headache if I were to wear it over a long period. I’ve got a customised made neck strap style earphone which I can wear over the neck like a necklace, there is no way I can stop the noise but it calms me a little to know that I can readily (in seconds) plug into my music whenever and wherever. I wear sleepphones (headband with speakers) to sleep with the air-conditioner or dehumidifer on for the white noise, whatever helps to reduce the impact of the external noise, even if I can’t block them out. However, there are times at work where I need silence and even music can be distracting so I have been thinking of getting a pair of noise-canceling headphones too. I’ve tried the Bose QuietComfort in the airport and was quite impressed with the noise-canceling effect, they seem comfortable too. I was tempted to buy but they are very pricey although my friend said they are pricey for a reason and maybe she is right.

        Liked by 1 person

    2. im not sure that tinnitus is something we totally understand yet. there are different possible causes, (more than one) are there not?

      that said, i do think there can be acoustic triggers. the main reason i think this is nile rodgers has it, and he says it gets triggered by other sounds. getting back to the idea of blessings/disabilities, i think tinnitus is a difficulty for rodgers, but i seem to think he mentioned it being part of how he creates music. i was unable to find the reference, however. i did find that they were doing a trial on a tinnitus drug a few years ago– dont know how that went.

      Liked by 2 people

  6. Well, you and your partner are going to be quite the pair, in later years! 😉 One deaf, the other blind… Not poking fun, just remarking at the possible trajectory. That could actually work out well for you both – just like you can take a break from the cats, you get to take a break from him… and getting a break from your significant other can be quite … positive, if you know what I mean 😉

    Liked by 2 people

    1. Lol so true! Actually we DO find it kinda funny. We went to school together, and I was The Note-Taker, of course, because I could see well enough to do so…except that in our later years of school, I couldn’t always hear every word the professors said. I would turn to him and in a very low voice (his hearing is great), ask him to repeat words for me so that I could write them correctly.

      When introducing ourselves to professors (we were in an unconventional situation and needed certain accommodations, like to always be paired together in groups (I.e., never split up), we would make a (quite un-PC) joke: “I see for him, and he hears for me; together we make a whole person!” Wow, that sounds incredibly ableist and it’s probably very offensive to many. But basically, for us, it was a survival strategy in an abled world, an ice-breaker to warm ourselves to those from whom we would need special efforts and favors. It was also a personal, mutually-shared psychological coping skill: if we could laugh about it (and we always meant it in a way that wasn’t self-denigrating, but rather, light and non-serious), then we could accept our situation a little bit better, and it left less room for depression to set in 😊

      Sorry for the info-dumping book-comment! Lol 😊 I just wanted to let you know that: 1) OMG do we ever think alike! 2) that your words were very well taken, 3) never to worry about offending either of us (for us, we’re not easily rattled by vocabulary terms; it’s all about the intent/spirit behind them), and 4) to thank you so much for your insight and perspective! ❤️🌟☮

      Liked by 1 person

  7. it can definitely be an asset. it can suck energy out of you, not hearing… until you turn that around. which you’ve done pretty well. so instead if being sad about missing things, using it as a superpower.

    i have similar moments with eye stuff. there are good eye days and bad eye days, and sleep issues (which are a far more common thing than just totally blind people thing). it was odd realizing that it would take much longer for family and friends to not make a bog fuzz of my using screenreaders, loving learning braille and getting excited about assistive technology. combined with aspieness, i get annoyed with strangers trying to always do the social eye contact dance so i wear dark shades. haha, let them wonder if im blind, aspie, both, something else, or just a jerk wearing shades at night. :p
    then whenever i get to meet others who use and like the same kind of stuff it gets exciting, like … well, it was all an aspie special interest thing (which it can also be). a big discovery: it’s difficult for others to tell if someone is an aspie, or if they have sight loss or hearing loss. if someone grew up deaf from childhood, then they might have a bit of an accent. if someone grew up sighted, similarly they won’t necessarily look blind because they knew what things looked like, and maybe still see a bit. so keep all those additiobal things hidden?? many do. and people incorrectly assume that just because someone doesn’t see or hear they must be depressed. so time to fight that.

    i would love the option to tune out hearing and enjoy silence when i want. but i can’t, my ears are always on. when i wake up i can guess what time it is from the sounds. so trying to at the moment figure what my next wireless headphones will be like: noise canceling or with some hearing augmentation (hearphones, by bose… or their quietcontrol). with noise canceling having settings to decide how much noise canceling i need is vital as if walking around i need to hear the environment, but if i want to tune out everything then put some white noise on… the city i live in just way too loud everyhwere. an aspie thing. so i want to mute that in louder places

    Liked by 2 people

    1. Thank you so much for sharing your perspective! You’re in good company; my partner is (legally) blind as well, and like you, he was very open and forthcoming about what it’s like. He didn’t want to leave any mystery to the imagination. He didn’t want assumptions to accumulate, nor did he want me to feel like I had to tiptoe around the elephant in the room 😉

      I really appreciate your thoughts and your support! It is indeed so very cool to meet others who also face certain circumstances not commonly shared by the world at large 🙂

      Wouldn’t it be too cool to have the ability to adjust one’s senses (all five–or six, if you will), according to your environment and your preference at that moment? Just to have five or six individual switches that could each be adjusted in real time. Maybe someday, technology will reach that point. It will probably be invented by an Aspie 😉 😉 ❤

      Liked by 3 people

      1. The tech to adjust or on/off any or all senses would be so cool.
        I guess NTs do that automatically. They can tune out sound, not smell things etc etc. or at least they seem to.
        I love learning from others. And i guess it takes quite a bit of courage to let even the spouse know of the blunders and struggles. (Like those tiny sample size toothpastes… yep, there’s one i always mistook for eye cream) My other half has trouble hearing sometimes, but he’s got good eyes. He’s more NT than me so he occasionally translates people to me, all those between the lines and when NTs circle around something I miss.
        I’m glad i have him around, as he lets me do my own discoveries and explorings with people and things. ^_^
        It’s just a thought, as i have no numbers, but perhaps there is a higher number of autistics with some sensory differences, and with that i mean random sight or hearing issues, compared to general population. I know a few aspies with usher syndrome (ie deafblind) in twitter. That’ll have to be interesting in people situations…

        Liked by 2 people

    1. Thank you for your beautiful words! It’s my pleasure, dear friend ❤️ Thank you for sharing your positivity and beauty, too! 😘😊❤️

      Liked by 1 person

    1. Thank you so much, Mummy Here And There! I agree with you – I would really miss music, too. It’s a “special interest” of mine 😊❤️

      Liked by 1 person

  8. “I realized that the volume on the world is turned up too loud by default. I learned that this was a common culprit behind my chronic irritability and increasing overwhelm.”

    Gosh, yes!

    Reading this post has made something click into place for me. While I was living with treatment for myeloma, I realise, from reading this, that I had a similar feeling about my experience as you are discovering about your developing deafness. I hadn’t been able to fully grasp/express what it was until I read this, added to the recent ‘official confirmation’ of my autistic identity… It was a relief to be undeniably and totally permittedly excused from the intensity of the ‘turned-up-too-loud’ world, that I wasn’t even consciously aware of. It is really not at all surprising then that, now I’m in remission and supposedly ‘back to normal’-ish, I’m not totally overjoyed, because now I have to deal with the world again, only with more limited energy resources than I had previously (after-effects of treatment), meaning feeling more anxious, overwhelmed and irritable even more often than ever before.

    I think this is actually a huge revelation for me. Thank you! 😊

    Liked by 1 person

    1. Wow! Thank you for sharing your story! I’ve seen your blog (which is amazing, by the way!) and I admire your strength, girl ❤️❤️

      Thank you dearly for your lovely words, too 😊 I’m so happy to have been able to facilitate that 💞💞

      Liked by 1 person

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