A Year of Sounds I Never Knew (by sarah)

It's been just over a year since I found out I was deaf and had always been deaf to some extent. I went because my hearing had gotten worse - it often gets worse when I have colds etc... and then goes back again except I had covid and then covid and more covid and somehow unlike my sense of smell it wasn't returning and now the TV and music was very loud and I was aware I was frustrating people. And my understanding of speech was comical at best.

I have (Pendred Syndrome)[https://en.wikipedia.org/wiki/Pendred_syndrome]. (yes I have the "wrong" thyroid condition because things are never simple and that sometimes happens like two types of thyroid illness on top of each other).

Fevers, infections and head injuries cause step changes in my hearing. So I may not have actually been born deaf as the loss with this kind of deafness can happen during early childhood but I know I was a deaf child and that I had huge problems with infections and tempereatures as a child. I was also being seen by ENT (Ear Nose and Throat) and getting speech thearapy at the Deaf School. But I had gromets and I don't know if things were not explained properly because I could hear so much better after the gromets for glue ear. So much so the world was completely over whelming and I became aware my speech was wrong and stopped speaking for a bit - I was 4 yrs old for the first lot of gromets. I missed most of my first year of school due to infections and an immune response to my blood transfusion.

Weirdly this should have caused an idnetity crisis but it hasn't it just kind of provided some clarity for me. My mum had the same type of deafness, my uncle was deaf and I had two cousins who had to have hearing aids as children. I have since discovered more aunts are also deaf and infact have the implant which I was told I was too old for!

I grew up with signing and subtitles on all programs that could have them and my uncle was very deaf. It was obvious I was deaf inside my family because I had more hearing than a lot of the family and if I needed to lip read to understand people well... I had been nearly completely deaf whilst at the critical stage of childhood language aquasition - that was not supprising but I thought it was a processing issue - I have actually been getting by on chaos guessing - words you wouldn't think are similar from sound are with lip reading leading to some humours mess ups and more frustration and tears - I thought I was thick. Now I know to watch for it I can not hear people when they have a hand over their mouth - I thought the hand blocked the sound... but its just even if I have a video on silent I hear words when I see the mouths move.

So year I am not what many would consider deaf I can hear sounds but not the middle range - a cookie bite on the graph apparently. And annoyingly and most importantly right were a lot of people speak. I can hear high pitch and low pitch except since the head injury I have had continual tinitus - three different sound variant sometimes just one electric hum and sometimes all of it at the same time including a high pitch whine that previously I would have associated with passing out. I had a laughable conversation with the audiologist where I thought I was mucking up the test because my tinitus was bad that day and I couldn't tell where or when the high pitched signals were - this was how I found out that tinnutis is a form of deafness.

I thought a lot of people mumbled and the kids have realised they have a special talking to me voice which is higher pitched than their normal vioces and a lower very deep one for if they need my instant attention.

The hospital told me that I had adapted too well for my own good as it meant I didn't get support that was actually needed. Also my eyesight was damaged by covid and alot of the change in my hearing was actually just my eyesight getting worse so I couldn't lip read as well. Bare in mind the Graves Disease and possible diabetes stuff affects eyesight too. I do infact have new glasses and yeah the eyesight is worse again but the eye health is actually better than it was just after my first lot of covid. I am still on thyroid treatments - weird thyroids are infact part of this type of deafness which is a rare recessive that appears globally but it is one of the main hereditry types of deafness.

Apparently when I was at school the emphasis was on being able to get on at a hearing school so as soon as it was considered I could do that support would have been withdrawn. I am pretty angry at this to be honest along with being told off for talking with my hands/movng my hands around.

Part of this journey has also bought up the fact that I thought everyone understood at least slow finger spelling - they don't - I understand simple stories in sign but Alaric does not - this is a weird realisation. I am not good at sign - nothing seems to quiet match the stuff we used and mum moaned about this as well but still there was some understanding - I remember her beaming at a lady who signed to her just after her stroke when we were out for our Christmas walk - that is another complicated story - sign languages and systems can be bizarly controversial.

Yeah so I am angry or rather angyier.

What else?

Well I now have hearing aids... I find changing the batteries a pain and almost ate one o.0 not brilliant! They sometimes make my ears itch, I have scarring from the gromets and evidence of having done water sports in the UK (surfers ear). I do not have the right number of turns inside my ear which is why I have always struggled with balance and also why it took physio longer to re aling my ear crystals and sort my balance after the head injury. I had a scan - very scifi head cage type thing just to check as some rare cancers can cause the same issue. I think this might be the sort of cancer one of my friends had that cause them to go deaf.

The hearing aids are slightly too big and hurt a little, but have given me so much, I heard whole extra bits of bird song and music - I cried at The Lord of the Rings sound track - there was a whole extra bit I just had never hear. Rain makes a noise. This week we went to the sea and the sea... I could hear it from the top of the beach - it sounded different to how its always sounded to me as well. Cheepy little birds sound the same but crows etc... do not - there was always a puzzle for me TV crows did not sound like crows and I was always perplexed that they made them sound like that... they actually sound like that its just the TV was amplifying the bit I can't normally hear so I was hearing it (hope that makes sense!).

Sometimes the world is too over whelming and I take them out or turn them down. Others have said this is the wronge thing to do and they went straght to wearing them 18 hrs a day or all the time they are awake but they have all lost hearing due to age and so ts given them back what they had. And though obviously my hearing is worse so it has given me back what I had lost but it has also given me so much more - not full hearing - they just can't actually do that. I find sometimes it activates my headaches if they are in too long - I am having to learn new language/sound processing and I am mid 40's even if they could give me full hearing I apparently would be unlikely to then be able to process it all.

Someone else told me about the drastic difference between the private £2000 hearing aids and the nhs ones - a world of difference but I am still over awed but what I have - I think it will be sometime before I would consider trying to aid more sounds to the melee!

A couple of friends have questioned why I have been calling myself deaf - I have some hearing... well for a start the drs told me I was deaf, and gave me hearing aids. Alaric also pointed out I am reliant on lipreading and the Deaf Association says that affect on language is a big thing. Very few people are profoundly deaf which is what most people think of when you say deaf. I already knew that was generally Deaf with a capital D. My friend was like "oh so your just hard of hearing" and I suppose that is a discription just one I kind of associate with getting old so it just didn't seem to fit with my situation - I knew I was a deaf child so it seemed right that I am a deaf adult... I am not really sure what the correct phrases are other than knowing it would be deaf with a little d rather than profoundly Deaf with a capital D and I don't even know how I know that. Medical people have only used the word deaf with me.

The deafness is in both eats - bilaterial is the term they used. Due to the kids I have been under going genetic testing which apparently the endocrinologist can't access even though the results affect things to do with my thyroid. Apparently if I hadn't already had kids I would have had genetic councerling - I am not sure what that means - but this is a rare recessive meaning the kids are carriers at the minimium. When asked if either of them appeared to have hearing problems I had to answer that I didn't think I was the best person to notice that - as I have a family with very deaf people in it. They agreed.

So the world is loud for me! This can make large gatherings even worse than before but there s a restuarant setting on my phone and being able to directly pick up the mics at festivals etc... has been amazing!

I want to learn BSL (British Sign Language) but am shy - I know the ladies at the Deaf Association always sign "help?" when asking me if I need help/assistance for my batteries. But I don't sign back. Alaric completely missed they do this.

I am sure you are all already bored of me going on about this! But it is revolutionary for me - I spent so much time feeling loney and stupid and so much of that can be directly laid at the feet of being deaf.

This that are kind of bonuses but also my own internal albilism - if I had been treated properly as a child I would have had a head cage - oh the irony of being more susceptable to head injuries and them also being more catastrophic and being a wild card child (ie one always getting into a pickle breaking bones A&E trips for stitches in my head... but if this had happened though I would have still been me I feel the bullying would have been worse and I would have been sent to the "special" school and though it provided some of my friends with amazing support I doubt I would have gotten to go to university - kids from there just didn't. The other is seeing how Mary is affected by their ADHD... I think it is basically the same as mine but I was deaf and bizarlly this acted as a bit of a sheild for overwhelm - the overwhelm is quite bad with the hearing aids and that is still no where near full hearing let alone over sensitive hearing.

So I am deaf. This is still weird! I now have to put my ears in as well as my eyes on and remember my legs (crutches) before leaving the house!

Also I get to be a deaf musician and song writer - who knew?!