Deafness

We are not compatible with the school system because we don't know how to behave and it doesn't stretch us (I hated it but fitted in better than many in my position, except when it came to maths. A certain teacher aimed questions at me, in front of the whole class, deliberately to humiliate me as he knew I couldn't answer them).

We are non conformist, not because we deliberately want to rebel against authority but because we don't have the social skills to fit in (we are size ten feet in size five shoes as I once put it). Our rebellions (temper tantrums) are because of sensory overload. Like a bucking bronco we kick off unwanted pressure and distractions from outside. For instance when I was a volunteer at The Dunn Nutrition Centre in Cambridge, I lost my temper because my room was beside the toilet block and I got fed up with banging doors and toilet seats. I locked the entrance into it and threw the keys in the courtyard, leaving shortly after that.

Digestive sensitivity (histamine reaction to wheat and food additives), disclosed themselves through indigestion, hay fever and twenty odd years of migraines. It may also be why I have to continually crack joints in my body (not only knuckles but knees, wrists, neck, lower back, between the shoulder blades, ankles and for some odd reason my left big toe but not my right). I also have restless leg syndrome, which is probably an offshoot of this. I also flick, tap and raise individual fingers, which I assume is my form of ticking but not like a clock.

Why is apparent deafness is one of autism's principle symptoms? Well that is because hyper visual concentration means shutting out all distractions from the other senses and that includes sound, hence the appearance of deafness. Even ordinary people need to do that because sound especially, turns our attention outwards into the world and away from visual attention aimed down and in.

The OCD component is I believe two fold but related. The first is the obvious fear of contagion (disease mostly) and the second is a fear of chaos. This is why we have our own rituals and the urge to create order around us (disease and dis-ease as objective and subjective parts of the condition). Illness creates internal chaos in our bodies and dis-order does the same thing with our minds.

Visual thinkers like me can instantly see answers to why things are the way they are. If you look at my writings (philosophical speculation), you will see that they are formulaic or even balanced equations, unless I didn't write my thoughts down instantly when they came to me, in which case they would have rambled into lengthy diatribes, no better in most cases than anyone else.

I too find talk confusing because of its speed and the efforts of verbalisers to work in depth is minimised. Temple Grandin’s point about the blind using bat echo location, falls into line with my point about sign language and forcing the deaf to talk. They have no sonic feedback ability, so cannot improve their ability to talk. They do see however and can speak with their hands as quickly and fluently as verbal speakers can with their mouths. My next door neighbour has developed motor neurone disease, so can no longer speak clearly but her handwriting is still as legible as it ever was, so this remains her principle means of communication.

Alters, valences and MPD sufferers are all attempts to take on the characteristics of those who are more successful in society than we are (adopt their persons).

At school my maths teacher at secondary level, always picked on me because he knew I couldn't answer any abstract questions he threw me. Then on the last day of the final term in his class, he produced a game for the whole of the class to solve and I was the only one to work it out because it was visual (you have two rows of three coins, arranged so that the top row is offset, sitting on the bottom row: all the coins touch two others and you have to turn the design into a circle by moving one coin at a time, so that they still touch two other coins, until the figure is complete).

When the autistic talk about their condition being a traumatic experience, they are correct. My wife broke her wrist about a month ago and since then has had an NT arm and an autistic arm. The injured hand is ultra sensitive. When she uses it to touch the sleeve of her jacket, it feels like sack cloth she says but the other hand has no such effect (hot and cold are equally contrary).

When I used to have migraines, it was the same for me but there was little discernible difference in body sides just a whole body sensitivity to touch, light, sound, smell and taste (in all cases input was too much). This makes me wonder if it's the same for epileptics and stroke victims? Is autism simply nerve damage that remains undetectable by our present medical technology, which in turn is not sensitive enough to pick up such data?

If you survive your impetuous youth, to reach my age, you'll have all of the following to look forward to and more (Old age doesn't come empty handed as they say in Scotland): Indigestion, heartburn, piles and a bladder that controls you - not you, it. You'll cut and bruise easily too. Your teeth will be sensitive to both hot and cold things equally. Chewing hard stuff? Just a memory of stamina you've no longer got. Your eyes will run at the least sign of cold weather, until you drown in your tears and your nose may follow suit. Oh yes, you cocky little bastards - no more bare arms and t-shirts in the pouring rain or falling snow flakes. As Leonard Cohen sang 'You'll be aching in the places, where you used to play.' One day the wrinkled bag between your legs, will be caught up by the rest of your body and you'll be a dried and crinkly old prune all over.

I hate the lot of you, with your smooth skin and pimply faces. Your ability to run and play in a way now lost to me forever, gets right up my nose but one day I'll have my revenge, if you don't kill yourself first. Old age is the only prejudice that can be guaranteed to catch up with you. The shoe invariably and inevitably fits on the other foot. That cannot be said about race, sex, sexual persuasion or class. We all grow old and one day you'll be laughing on the other side of your face, when the insults you sent out to us, return to haunt you, 'grandpa!'

That poor lad shot in the head at point blank range in Salford recently and that boy stabbed through the heart, crossing a bridge in London a few years back - total strangers, killed for no good reason. They could have grown up to be worth something to society, murdered by jealous scum who were no good to anyone. All you lot talk of is respect, yet you show us none and scant little to anyone else, including yourselves. When you reach my age, who'll look after you because your kids won't. Like you abusing us in care homes now, this is also something for you to look forward to.

I wish you all the corns, callouses and ingrowing toenails I have. All the bad breath and rotten teeth too. The arthritis, the rheumatism, failing eyesight and all the other general aches and pains that come from getting older. The permanently gunged up eyes, ears and nose. The dribbling at both ends (The erectile dysfunction especially, I wish you well with). The veins showing through your thinning and blotched skin - welcome to the real horror of old age! The juddering when drinking, the lack of stamina that leaves you leaning on a wall, on the way home. The deafness, the memory loss, the perpetual dry throat - the old person's smell that hits you, when you reach a certain age (Everything stinks in a different way from that point on). The shakes, the loss of balance as bodily rhythms throw you all over the place, where once you controlled them, right down to the smallest movement.

All your vain wallowing in pride about your appearance - where will that be, when the hair on your head turns grey or falls out and what's up your nose, in your ears and on your eyebrows, turns into a dense thicket? What will you do, when your body turns into a bag of fat or just skin, stretched over bone?

All those smooth skinned, lithe young bodies, having no blemishes except for temporary acne - I envy you! My revenge is knowing that one day you'll end up just like me - old and falling to bits at the seams. All the 'pleasures' you enjoy now, one day will be gone. Sugar will set your teeth on edge, bread will give you heartburn, fat will make you want to throw up. All of life's victories you can say goodbye to because they will simply make you too ill, to enjoy them anymore - the sex, the drink, the cigarettes. All because you've become too sensitive to sensations, to put up with them anymore (Too bright, too noisy, too smelly, too strong tasting). The first half of your life, you're indefatigable - the second, crushed to death by your experiences. The good memories disappear and the bad ones resurface. Do I have a poor memory in reality? No, I just don't want to remember the past anymore or experience the present and as for the future... I've lost all my appetite for life and just want to die. I've watched family and friends go before me and now I'm dead inside too, just waiting for my body to catch up and release me from this living hell of daily life.

I remember how it used to be with my wife and me. We stood together against the gathering storm but now we've fallen apart. We can barely talk to each other. We go through the sham of a happy marriage, like nearly everyone else we know because that is what is expected of you. I remember when we first met and fell in love. We were two strangers, who opened up and trusted each other. The barriers between us dissolved and like blocks of ice, melting into running water, we flowed into one another. Finally finding a mirror of ourselves, we blossomed into one being and abandoned the lies and subterfuge of the world around us. Now the agreed upon barriers have been reforged. We do not let passion push us beyond this. We never meet in no-man's land anymore. Our 'relationship' is constant and consciously maintained because it can never be anything but distant from now on. Love is dead. Mutual exploration is dead. We are dead.

We no longer fight or struggle for understanding but have drifted away from each other. We are polite across the cold spaces between us, going through the senseless formalities but that is all. To outsiders living their own cold, dead lives, we are 'still' in love but robots know the truth, minds know the truth - hearts though won't accept it and die for their treason to hard facts.

Yes, you have all this emotional hell to look forward to and I wouldn't wish it on anybody, not even you - the death of love, the death of friendship, in a crumbling world where we throw ourselves into tasks, to avoid facing this loneliness, this emptiness, we cal our 'lives.' We are battlefield casualties of a war we slid into - one we never consciously chose. Wrecks of yesterday - mind staring at mind, broken heart at broken heart, unwilling to face the pain inside. We pretend that all is 'normal' and act as though it were, in the vain hope it will be again but knowing different in reality.

Shut me in my box

Keep me safe and warm.

Shut me in my box

Save me from the storm.

We are non conformist, not because we deliberately want to rebel against authority but because we don't have the social skills to fit in (we are size ten feet in size five shoes as I once put it). Our rebellions (temper tantrums) are because of sensory overload. Like a bucking bronco we kick off unwanted pressure and distractions from outside. For instance when I was a volunteer at The Dunn Nutrition Centre in Cambridge, I lost my temper because my room was beside the toilet block and I got fed up with banging doors and toilet seats. I locked the entrance into it and threw the keys in the courtyard, leaving shortly after that.

Digestive sensitivity (histamine reaction to wheat and food additives), disclosed themselves through indigestion, hay fever and twenty odd years of migraines. It may also be why I have to continually crack joints in my body (not only knuckles but knees, wrists, neck, lower back, between the shoulder blades, ankles and for some odd reason my left big toe but not my right). I also have restless leg syndrome, which is probably an offshoot of this. I also flick, tap and raise individual fingers, which I assume is my form of ticking but not like a clock.

Why is apparent deafness is one of autism's principle symptoms? Well that is because hyper visual concentration means shutting out all distractions from the other senses and that includes sound, hence the appearance of deafness. Even ordinary people need to do that because sound especially, turns our attention outwards into the world and away from visual attention aimed down and in.

The OCD component is I believe two fold but related. The first is the obvious fear of contagion (disease mostly) and the second is a fear of chaos. This is why we have our own rituals and the urge to create order around us (disease and dis-ease as objective and subjective parts of the condition). Illness creates internal chaos in our bodies and dis-order does the same thing with our minds.

Visual thinkers like me can instantly see answers to why things are the way they are. If you look at my writings (philosophical speculation), you will see that they are formulaic or even balanced equations, unless I didn't write my thoughts down instantly when they came to me, in which case they would have rambled into lengthy diatribes, no better in most cases than anyone else.

I too find talk confusing because of its speed and the efforts of verbalisers to work in depth is minimised. Temple Grandin’s point about the blind using bat echo location, falls into line with my point about sign language and forcing the deaf to talk. They have no sonic feedback ability, so cannot improve their ability to talk. They do see however and can speak with their hands as quickly and fluently as verbal speakers can with their mouths. My next door neighbour has developed motor neurone disease, so can no longer speak clearly but her handwriting is still as legible as it ever was, so this remains her principle means of communication.

Alters, valences and MPD sufferers are all attempts to take on the characteristics of those who are more successful in society than we are (adopt their persons).

At school my maths teacher at secondary level, always picked on me because he knew I couldn't answer any abstract questions he threw me. Then on the last day of the final term in his class, he produced a game for the whole of the class to solve and I was the only one to work it out because it was visual (you have two rows of three coins, arranged so that the top row is offset, sitting on the bottom row: all the coins touch two others and you have to turn the design into a circle by moving one coin at a time, so that they still touch two other coins, until the figure is complete).

When the autistic talk about their condition being a traumatic experience, they are correct. My wife broke her wrist about a month ago and since then has had an NT arm and an autistic arm. The injured hand is ultra sensitive. When she uses it to touch the sleeve of her jacket, it feels like sack cloth she says but the other hand has no such effect (hot and cold are equally contrary).

When I used to have migraines, it was the same for me but there was little discernible difference in body sides just a whole body sensitivity to touch, light, sound, smell and taste (in all cases input was too much). This makes me wonder if it's the same for epileptics and stroke victims? Is autism simply nerve damage that remains undetectable by our present medical technology, which in turn is not sensitive enough to pick up such data?

Mandy Harvey is my favorite female singer. She is also deaf. When she published her memoir in 2017, I was ecstatic. I want to share it with the Mighty Readers!

The inspiring true story of Mandy Harvey—a young woman who became deaf at age nineteen while pursuing a degree in music—and how she overcame adversity and found the courage to live out her dreams. When Mandy Harvey began her freshman year at Colorado State University, she could see her future coming together right before her eyes. A gifted musician with perfect pitch, she planned to get a music degree and pursue a career doing what she loved. But less than two months into her first semester, she noticed she was having trouble hearing her professors. In a matter of months, Mandy was profoundly deaf. With her dreams so completely crushed, Mandy dropped out of college and suffered a year of severe depression. But one day, things changed. Mandy’s father asked her to join him in their once favorite pastime—recording music together—and the result was stunningly beautiful. Mandy soon learned to sense the vibrations of the music through her bare feet on a stage floor and to watch visual cues from her live accompaniment. The result was that she now sings on key, on beat, and in time, performing jazz, ballads, and sultry blues around the country. Full of inspiring wisdom and honest advice, “Sensing the Rhythm” is a deeply moving story about Mandy’s journey through profound loss, how she found hope and meaning in the face of adversity, and how she discovered a new sense of passion and joy.

Happy reading! 📚💓

#themightyreaders #Deafness #HardOfHearing #EhlersDanlosSyndrome #Fibromyalgia

Mandy Harvey is my favorite female singer. She is also deaf. When she published her memoir in 2017, I was ecstatic. I want to share it with the Mighty Readers!

The inspiring true story of Mandy Harvey—a young woman who became deaf at age nineteen while pursuing a degree in music—and how she overcame adversity and found the courage to live out her dreams. When Mandy Harvey began her freshman year at Colorado State University, she could see her future coming together right before her eyes. A gifted musician with perfect pitch, she planned to get a music degree and pursue a career doing what she loved. But less than two months into her first semester, she noticed she was having trouble hearing her professors. In a matter of months, Mandy was profoundly deaf. With her dreams so completely crushed, Mandy dropped out of college and suffered a year of severe depression. But one day, things changed. Mandy’s father asked her to join him in their once favorite pastime—recording music together—and the result was stunningly beautiful. Mandy soon learned to sense the vibrations of the music through her bare feet on a stage floor and to watch visual cues from her live accompaniment. The result was that she now sings on key, on beat, and in time, performing jazz, ballads, and sultry blues around the country. Full of inspiring wisdom and honest advice, “Sensing the Rhythm” is a deeply moving story about Mandy’s journey through profound loss, how she found hope and meaning in the face of adversity, and how she discovered a new sense of passion and joy.

Happy reading! 📚💓

#themightyreaders #Deafness #HardOfHearing #EhlersDanlosSyndrome #Fibromyalgia

We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We are growning fast and just passed 2,200 members. This is really exciting to me, however to be honest, I have been very frustrated that there is less activity recently and as our membership grows steadily the number of comments & replies has actually diminished. Our old co-leader Chris is no longer with the group and we need to have others step up and make up for her commitment to regularly respond to posts and comments. This means a collective effort from everyone in the group! I have had numerous layers of serious physical & mental health challenges recently and not been as active as I would like in order to step back and focus on self-care. This is a time having another co-leader to pick up the slack is essential!

My last post about hobbies was actually first posted 16 months ago (when we had at least 1,000 less members) and it got over 200 ❤️ & 👍and 100 comments then! It got only ONE this time. And Laura made a great post about disability after that and it got only two responses as well. When new members open up and post to introduce themselves and then get very little response that is even worse. I fear that new members will see this and not be active moving forward. This is OUR group everybody and it functions best when members support other members. We all have our varied health histories and with them the knowledge and wisdom we’ve garnered along the way! PLEASE let’s share these with each other. Without this empathy and understanding this group is falling short of what I first envisioned when I started the group and what it’s capable of.

For a co-leader I am looking for someone to welcome new members, comment or respond to posts and other comments & replies, and make new posts to the group. It is important for the group to have distinctly different voices to support people because people might relate more to either of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.

Offering your own posts provides more content for the group. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like, will comment on your posts to get the responses going to best support your efforts, and I can help finding memes or images.

I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people.

You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from your personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!

In service,
Moshe
@moshemhc

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