The saying “silence is golden” has a wealth of meanings but silence isn't always golden, in fact sometimes it's the opposite. I've had many moments when silence is been oppressive. Sometimes it can seem almost like living inside a thick bubble. The thickness distorts everything outside making it impossible to make sense of images, sound can't penetrate the bubble either, it can make the world seem such an unwelcome alien place, the only safety is to close eyes and forget the bubble and silence. With eyes closed loss of hearing and vision don't count, memory can trigger sounds we once heard and hold images of people and places. Memory is an amazing thing, provided I have help sorting things out and have someone on hand to check quantities and things I can still cook within reason. It's the same in the car much to the frustration of whoever is driving, I'll say 'take a left or second right', occasionally I'm right and memory pays off but more often we get lost courtesy of modern road upgrades! Musical memory means if an old song is played I can recall the sound of instruments and voices, of course I don't remember the lyrics to every song but it's great fun if I do.
On a visit to my granddaughters school they forgot about me when the fire alarm went off, leaving me the only person still on the premises. I've sat on an empty train after the other passengers had disembarked following an announcement the train had broken down. Tradesmen exploit the fact I can't examine completed work and often don't do the job properly or worse give verbal estimates
then maintain 'I misheard them' and bump up costs.
One of the most frightening experiences I've had was when at home alone. Things had been tough and I was suffering stress with the usual stress related symptoms, increased heart rate dizziness etc. Recognising my problem I just wanted reassurance and someone there to listen. My local health center allows me access by email to make and cancel appointments but nothing else. Disabled people can have access to a panic button but they require use of hearing. An alternative is an emergency button that sends an emergency team directly to the home. In this case it wasn't an emergency, I didn't have one of those buttons and just wanted someone to help me calm down. For people like me with no hearing and minimal sight nothing exists to let us have direct contact with health providers. If I'd had an emergency email contact it would've made so much difference someone could've mailed me back and offered that little bit of reassurance.
I'll never forget that day or the feeling of utter despair, fear and helplessness.
The same thing applies with various government departments especially those concerning benefits. If someone contacts them on my behalf they demand to speak to me personally, I usually take the phone give my details and hand it back to whoever is making the call for me. 9 out of 10 times the department maintain "they can't speak to a third party therefore cannot process my request."
Doctors surgeries are a nightmare too. Although they now willingly provide note takers for consultations they don't allow appointments (urgent or otherwise), to be made after 8.45am. I can't use the email appointment service if I need to see a doctor soon or within a day or so, they maintain they don't check emails regularly and by the time they do it's way past their appointment window, it's not always possible to have someone on hand to phone them before 8.45am. It's a lose, lose situation.
The threat of benefit and disability cuts is alarming and on top of the inequality and humiliation experienced by dual sensory loss people and other disabilities it seems a bit to much and so very unfair. It's about time the system realised people don't choose to have problems, but the system deliberately chooses to ignore the needs of people with problems...
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