As someone who is visually impaired in addition to having hyperacusis, having accessibility features on my device is very important. Things like invert colors, large text, bold text, voice control, speak screen, etc are very important for me and other visually impaired people. There are accessibility features for people who are deaf or have hearing loss, mobility disabilities and learning disabilities. Quite a lot of settings that help those who are hearing impaired such as flash to indicate a phone call or notification, vibrating alarms, closed captions and other things are also useful for people with hyperacusis. However there are a lot of things that need to be improved in order to make devices fully accessible to those who suffer severe sound sensitivity. Phone calls and video calls can only be turned down to a certain volume, which for some people is still too loud, or you have to completely mute the audio entirely. Things like computers, tablets, and cellphones need to have the capability of being able to lower the volume in 1db intervals to enable people to be able to turn it down as much as needed, to their specific tolerance level. 

The internet itself also needs to be made into a safer place for those with hyperacusis. Even though most of the time those of us with severe hyperacusis keep our volume turned off some of us are able to handle certain things turned down very low. I watch documentaries and other shows mostly on volume one, unfortunately oftentimes videos will have unexpected loud noises: music, voices increasing, shouting, gun shots, sound effects, etc  Being tolerate a video where a person/people are talking is completely different then being able to handle blasts noises like these. Some people would say that we should just mute everything on mute, and yes for those that can’t handle any sounds at all have to do that. However if a someone can tolerate listening to people’s voices, set a quiet level, and wants to be able to watch videos with the sound turned down low, they should be able to do so safety knowing that they won’t get injured. Just like close captioning is a required accessibility feature, online media such as: shows, documentaries, music, videos, etc should also be obligated to write descriptive noise warnings below their content. For example if a documentary has gun fire and people yelling in it, the producers should include that information in the summary/about as well as the exact minutes and seconds at which these noises will happen. 

Even though there are definitely still many auditory dangers and things that need to be fixed and improved to make technology and the internet fully asseccible to those with hyperacusis, they still open up a whole world of opportunists for socialization and independence that some of us otherwise wouldn’t be able to have. Smart devices that can be controlled from other parts of the house such as: microwaves, washing & dryers, tubs, etc enable those of us who can’t tolerate the noise to still be able to perform these essential daily life tasks. Remote work or telework allows people to be able to either create online self employment or keep there job without having to go into a loud environment. Facebook, Instagram and other social media sites allow those with hyperacusis to form support groups and communities of other people that we can talk to and relate with. When events are held over zoom or google meet, despite the challenges that we still face as I discussed earlier, it’s still easier for some of us to participate in these events, even if it means just reading captions, then it is for many of us to attend things in person where there is no way to control the noise. What do you think? Has the virtual world made it possible for you to partipate in more activities or more easility access the school or work environment? What ways do you think the internet could be made more accessible to people with hyperacusis? Please share you thoughts in the comments below.

People with disabilities and long term health challenges often require financial assistance to pay for different types of equipment, home modifications, and other expenses that enable them to have a good quality of life. Those with visual impairment often need magnification devices, screen readers, braille displays, high prescription glasses, etc. People who have mobility disabilities may require wheelchairs, ramps installed, walkers, grab bars, etc. All states have goverment agencies and often privately non-profit organizations that will have disabled people afford these items. Those with hyperacusis also have costly needs including but not limited to: soundproofing, smart bathtub faucets, smart appliances, hearing protection, and even sometimes assistance with things around the home. Unfortunately the disability agencies and often non profit organizations that help people with more common disabilities pay for the things they need, don’t understand or recognize hyperacusis therefore will not provide financial assistance to cover their unique expenses. 

In order for me to even be able to go into my room without hearing protection, never mind sleeping in there, my parents had to pay to soundproof it. Many people with hyperacusis have lost their jobs due to their condition and cannot afford to pay for soundproofing. If I was paraplegic or quadriplegic they would likely have been able to get some sort of disability home modifications agency to help pay for the installation of a ramp! If hyperacusis was recognized as an actual disability then we likely could have gotten assistance to afford high grade soundproofing for my entire room. There are faucets that enable you to run a bath from another part of the house, which can be very useful for people for whom the sound of water causes them pain. However, with the combination of the faucet itself, another part needed to be installed, and the price of installation is between $3,000 and $5,000! This would be costly for most people, and its just one example of many prices for home medications and assistance technologies that could benefit those with hyperacusis, but they are unable to afford. I know many people who live in environments that are too loud for them, or even people who simply just struggle with basic natural sounds coming in through the windows. Due to the inhumanly low income those on disability receive, they are unable to afford moving to a quieter home and or high quality soundproofing, and as a result live in a state of severe constant pain. There are others who I know don’t live with quiet understanding friends or family that are willing to help them with the tasks of daily living that are too loud for them and as a result literally have to eat raw food, bath once a week, barely have clean clothes and are basically deteriorating. If disability agencies would have these people pay for things like smart microwaves, those people would at least be able to have hot food, bath, and other basic conveniences.

Since currently most disability agencies refuse to help cover the things that people with hyperacusis need, I have started a program called the Hyperacusis Assistance Fund. I have registered Hyperacusis Awareness as a member of the Amazon Partner Program, which means that when people buy selected products a percentage of that money goes directly to help people with hyperacusis pay for the things they need. You may have noticed that we have a new store tab, all of the links to items listed there are a part of our partnership program, as well as products posted on our social media, and purchasing them is the equivalent of donating money to a charity.

Under the heavens is the multiple-verse under the multiverse is layers layers of expanding bubbles that grow larger and larger the space between them a gap that cannot be bridges in any way known to humankind, under the expanding space is and foreign energy source that is controlled by Him the maker of all, the one who is above all else, below the foreign energy source is everything that can be and is somewhere some time, time its under there too, under the multiverse are universes each unique with there own governing rules, under those rules are mysterious beyond our imagination, under those mysterious there is life, life formed from stardust and forces life formed from molecules and chemicals unknown to us, the stuff of fantasy and fiction, under the life is the mind, the mind which contemplates and wonders, under the mind is the ability to dream to dream of everything that is or will be, sometimes under those dreams there is despair knowing those dreams are out of reach, other times there is hope, buts its under the hope under the determination to not accept what is to fight for something better, its under those minds and souls that those dreams turn into reality, under the reality is the shaping of a piece in the puzzle of everything that is and will be.

She waits to know what’s happening, waits for the music and noises to stop, waits at first not even knowing what she is waiting for, just waiting for the war to end, waiting for the knives and hammers to stop attacking her, waiting for someone to protect her

The weapons come on the own, but she waits for people to stop thrusting her right into their path, she waits in pain curled up a a ball on the classroom floor, waiting for a quieter place, dread and knowledge that each year she is only waiting to loose it, but she will eventually get it back right? This time she would wait locked out of her room surrounded by enemies on all sides crushing her skull and setting her ears on fire, they are cut and bleeding waiting for the scabs to heal, two weeks that lasts eternity,

she waits for the black hole the release her, in the waiting she loses hope, hope that the waiting will never end, how can one have patience in pain, the endless battles, each second dread, time moving so slowly, alone in the pain, alone in the waiting, waiting for information waiting for knowledge, crying out to the Lord for help, its seems like her doesn’t answere her cries, waiting for protection again, waiting for the sharp shards of shower water to punching her head, waiting to go home waiting to collapse into its quiet protection embrace, the dreading the dreading of everyday, waiting for 2 o’clock, waiting for day when she can learn without being in pain, waiting for happiness waiting to be understood, will the dawn ever come believe that the sun will never rise, but its words that will end the documents that she searches and searches to find and transcribe crafting them into a sword, the sword of information that destroys the knives and hammers, makes them put down there weapons, the sword that ends the darkness, slowly it begins to rise a new horizon pale strokes of beauty chasing out the darkness, she is free that sun has finally risen

waiting so long for the reality of now,

in this soul crushing waiting the pain has changes her, it shapes her future, changes the future of others, she realizes she waited so others don’t have to battle as long to bring them out of the waiting, yet always she will wait upon the future

Many of you know the significant struggles that I faced growing up with severe hyperacusis. The doctors did not believe that I experienced physical pain from sounds, and implemented various desentization plans that increased my pain levels. My family was given inaccurate information by doctors and therapists, that hyperacusis was a psychological condition, and thus my family supported and implemented the sound exposure treatment plans. The school system considered my hyperacusis to be an emotional disorder, took the approach of trying to desentizing me to noises at school, and refused to allow me to continue with 1:1 instruction in a separate building. I didn’t know anyone else with hyperacusis, it felt like I was fighting against the doctors, therapists, school system, and sometimes even my own family to get them to believe me and stop implementing harmful treatment plans. Not knowing anyone else with hyperacusis meant that my mom had no one else to seek advice or discuss my situation with other than doctors and therapists (the so-called experts as my mom now calls them) who did not have accurate information about hyperacusis. At the time the non profit organization Hyperacusis Research was just getting off the ground, they hadn’t published any articles, research papers, or made any breakthroughs in uncovering the physical mechanisms behind hyperacusis yet. When my family, school staff, doctors or therapists went to research hyperacusis online they only found information confirming their belief that it was a psychological condition that could be treated with sound exposure and behavioral therapies. 

In the facebook group Hyperacusis Research and Support, whenever I see a parent or caregiver posts about their child with hyperacusis I always send them a message to try to get in contact with them. With the parents that are comfortable with it, I ask them about their child’s symptoms, severity, limitations, etc . I also always offer to set up a virtual meeting with them and or their children. Sharing my story, and the things I went through growing up with hyperacusis, has proven to be an effective tool steering parents away from sound exposure therapies and recognizing hyperacusis is a physical condition. Another important thing I do is to make sure that parents are up to date on the latest research from Hyperacusis Research, I send them the articles that the organization has published about noise induced setbacks and physical mechanisms. Via facebook messenger I have created a small group for parents of children with hyperacusis to be able to communicate with each other. 

One of my goals with the Hyperacusis Awareness movement is start a virtual program special to help hyperacusis youth and their caregivers. Currently I have an active instagram group for teens I have met with hyperacusis to enable them to connect with each other. I am working on trying to expand the size of the parents group I started on messenger, which I plan to also use as a way to reach younger children who are not on social media. There are private secure platforms that people can: chat with each other, make and post videos and photos, write posts and play games that could be used to start a freestyle online program for children who have hyperacusis.

This isn’t her world she has always know it,

it would come whenever she bathed as long as she can remember the tail, it would come whenever she bathed

Beautiful pink sprinkling scales but for the cost of so much pain, doctor after doctor 

Laboratory life, every sound sending knives and hammers attacking her head, this as long as she could remember to, the noise always hurt her

They were studying this, she and all knew it was related to those beautiful pink scales

Sounds were a tool of study, seeing if her body would get “used to them”

Pain never ceasing, surrounding by yelling, blaring music, roaring, a symphony of pain

Putting her in the tub nightly daily all different types of water and temperatures, sometimes with painful sounds too, you couldn’t bear the horrible pain, always begged them to stop but they never listened to her, legs outside of water

So many hours spent a ball on the floor weeping from the the noise that tormented her

Her tail and pretty scales came and went as the water came and went, but the pain was a black hole she was trapped in, why couldn’t it be the other way around?!

No power no magic just a tail and noise induced pain, she had read about other mermaids of fiction, but this wasn’t what they were like, she was an alien and alone

How had her body managed to endure this all these years, she cursed her body

Cursed her tail, cursed her pain, cursed the fact that she was still somehow alive 

All types of tests combining water and noise, noise and water, they wanted to know about her glistening scales, at the doctors mercy

wishing and praying for her life to be over, tears so many tears, they took samples of those too of course

Hearing keen, ‘I’m certain she comes from the other side of the Bermuda Triangle” 

A gift for spying for ears dropping, the knowing of truth barrier in her soul the sure intuitive of her mind at hearing those words, from then on she knew

Researching, reading, searching, researching, reading, searching, researching so more

Ships disappeared, mystery, conspiracy theories, and underwater gateway to another world, 

For her there was myth no speculation, it was the way home she knew it with certainty of the blueness of the ocean, her scales knew it too

Getting to the Bermuda Triangle was like getting inside pencil case, impossible

Light years away, the noise induced pain trapped her in the pain, the pain itself prevented her from escaping the pain

Breathing underwater no problem, swimming for long distances, done weekly in the laboratory pool, it was the noise

The tiny candle that she had managed to light in the blackhole was snuffed out

Her face a water full drowning in the pain and despair, her heart and soul dead

A shell a tail without blood or tissue, scales that glittered without beauty, a powerless mermaid child

A golden square of light headed straight towards her, the research itself wrapping its arms around her, engulfing her entire body inside of bubble of words, facts and information

Slight ease of pain, slightly less loud like sap on a wound, finds she can move and walk and propel herself forward staying within the bubble, pain still washing over her

Less noise, rising up some protection through the bubble, oh the noise the pain, the planes, birds, punch stab, repeat, in the bubble in the sky using her tail she swims advancing the bubble through the air, forward, months it takes, yes some protection from the bubble but not enough, the pain crushes her skull, the sounds don’t stop, her tail is exhausted from flicking from swimming, uncertain of her direction, but knowing her desentization and truly to give her trust to the research bubble that if she keeps swimming inside it through the sky it will take her home, eventually after all the pain, it does, gently into the water towards a glowing silver square, using the last of her stregnth her propels the information with her inside it through to the other side

Quiet waters, the bubbles the research unwraps itself, it turns into a wand and she is free, so exhausted from this journey from this battle, the current carries her lets her rest, no more noise, no more pain other mermaids come over tails glicining in rainbows across the water, she is home, she is happy, she is free

As some of you may know, I am visually impaired. With my visual impairment I had adults in the visually impaired community who advocated for the things that I needed, I always had a teacher of the visually impaired and the assistive technology that I needed. My visual impairment was never treated as a psychological condition, and since it is a common disability that is well understood, people knew how to help me. I remember so many times as a child wishing that there was someone who could help explain to my doctors, special educational team, and even family members that desensitization was harming me. Wanting a person to help me understand what was happening with my own body, other than being told that it was anxiety. While there were other visually impaired people I could ask questions about what to do regarding the different challenges that came with being low vision, there was no one I could turn to for help about the much more disabling challenges that come with living with hyperacusis. Hyperacusis is so rare, and all the adults around me had to go on was the inaccurate information from the doctors. It felt like I was an alien dropped on a forgien and uninhabitable planet by myself, and all the natives were attacking me. 

My experience of having almost no one who: had accurate information about hyperacusis, could help advocate for me, help me problem solve ways to avoid noise, basically having another person with hyperacusis in my life to help me, is an unfortunate reality for many people with hyperacusis. Approximately only 1 in every 50,000 people are diagnosed with hyperacusis, and having a very severe case of it is even more rare. Those with severe hyperacusis often go to doctor after doctor hoping for a cure, and instead get repeatedly harmed by medical professionals’ lack of knowledge about physical pain and setbacks. Since hyperacusis is not a recognized disability those who have it rarely receive the accommodations and support that they need from those around them. Not knowing anyone else who has hyperacusis, not only makes people often feel lonely, but also means that they have no one to be able to: ask questions, get ideas, and help them solve the struggles that come from living with this disabling condition. The only ideas people with hyperacusis often receive come from people who have no idea of the severe physical pain, and are approaching things in a way to encourage the person to gradually expose themselves to sounds. This leads a lot of people with hyperacusis to have to try to figure everything out on their own and fight by themselves against a world that doesn’t understand them.

Things shouldn’t have to be this way, me and others with hyperacusis should be able to have someone in our lives that can help advocate for us, teach us what is know about our condition, and help us problem solve ways to avoid noise. Being a member of the National Federation for the Blind and involved in their various formal and informal mentoring programs has given me the idea to start something similar for people with hyperacusis. The goal of having a the Patient Education and Support program would be to connects those who are new to living with Hyperacusis, have had it for three years or less, or in a position were they are really bad circumstances regarding Hyperacusis, with a person who has been living with pain hyperacusis for 3+ years. These experiences hyperacusis sufferers, that the person is paired with, would need to be well educated in the current research, available resources, noise reduction strategies, and able to help advocate on their behalf (with doctors, employers, educational institutions, family, etc) when needed.

I am 1 in 50,000 who gets stabbed in the ears from a fork hitting a plate,

Throbbing lingering migraines from the sound of the refrigerator, the girl whom for a decade fought her way through a pitch black, dark, they were everywhere coming from all sides all the time, the attacks, arrows specifically targeting her head and ears from an invisible enemy, she stubbles along in the inky blackness blindly trying to protect herself, running and running, but she could almost never out run the arrows from her invisible pursuers she was sinking and falling being sucked into a void of blackness so thick she could not even see the light of her soul 

The arrows to the head and ears come every second now and they have hot knives and large rocks attached to their ends, she doesn’t know how she is still alive, she wishes that she wasn’t, she softly calls for help, not being able to yell because she had hyperacusis, the invisible attackers don’t stop and it seems that no one else hears her quiet cries and even if they did would they even believe her?

Invisible enemies attacking her head and ears and being trapped in this dark dark black void, that was too crazy for anyone to believe, yet it was her reality

She curls up into a ball in the blackness trying to cover and protect her head from the arrows, rocks, and spheres, but it was like her hands weren’t even there although the weapons passed through her hands painlessly the impact when they hit and stabbed her head and ears was with the same amount of painful force as though her hands weren’t there at all

There was nothing but the complete blackness and the girl knew she was trapped and that she may never get out of this, and she’s partially right, she won’t not for 8 years, during that time she sheds buckets of tears, consumed by the pain, and the thick blackness, the invisible enemies seem to never get tired they are ruthless and relentless in there attacks to her

weeping tears flowing down her cheeks, but this time her tears glow blue in the darkness slightly illuminating her brown face, then her head and ears start turning bright red and glowing, slowly three glowing fairies, one male and two female, there skin and wings covered in rainbow patterns appear in front of her, bright gold glowing paper falls from them, documents and documents and a pink pen, “knowledge is the key to relief, information is the most powerful weapon” they say in unison, gone now on her own again

So many words trying to think clearly, the pain consumed her mind tries to imprison her brain, it’s important so important that she figures this out, reading and reading slowly things become clear, everything moving a snail’s pace while the attacks of stones and knives continue to assault her head and ears, she’s smart though taking up the pen she writes writes everything that she can find from the documents fashioning it into a powerful sword

They appear she can see the giant boulders, arrows, and knives aimed at her head and the people behind them, literally all around her

Standing up grimacing with pain, reading from her sword, it seems useless the pain throbbing and stabbing doesn’t stop, slowly it does though

One by one they stop loading boulders, arrows, and knives they put down their weapons

It is silent and the darkness begins to dissipate, in its place a beautiful pink, purple, orange, yellow, blue and red sunrise

Not in the forest anymore, the pain slowly decreasing, no more attacks

She stands there holding her word sword holding the papers power 

Arms stretched above her head twirling and skipping around the lush green grass

Laying down surrounded by flowers and crystal blue ponds the golden yellow sun shining down over head

Oh no, she’s comfortable and taken care of, but its still there, the blackness surrounding her private oasis, she sees them now, people curled in the blackness covering their heads, being attacked by people hurling boulders and arrows, and knives

pain, the pain she endured herself for so long

Charging with the sword of words and documents, multiplying them handing them out to the tormented, using her own sword and standing and speaking to protect them as best she can, from the pain