Where’s the inclusion? BBC radio Essex

Published November 9, 2020 by goshgurl95

You may remember that back in May I was interviewed by BBC news and BBC radio Essex as I won a Rotary Young Citizen Award for all the charity work I’ve done for Great Ormond Sreet Hospital, microtia uk, families deaf children essex, Essex deaf children society, overcoming medical conditions, wanting to help change the world for other young people with deafness or who are just a little different and celebrating difference.

As a result of my interviews I received a lot of messages of support from friends and family but also messages of thanks from other people who are deaf or have faced adversity in their life for being different and it has been brilliant connecting with so many people and helping them.

As a result of my interviews BBC Radio Essex haven’t been following my blogs and were doing interviews about how people felt about wearing masks and speaking with people who were very much for the wearing of masks and those against it as well as speaking to people who are exempt, their daily struggles, challenges and how they are adapting and they asked if I would speak from a deaf persons view, which I was absolutely honoured to be able to do

For me personally I do and wil continue to wear masks although yes exempt and I hope that this helps to highlight some of the struggles and barriers faced by the deaf community

Working The Frontline.

Published November 9, 2020 by goshgurl95

As the world comes to a stop and goes into lockdown for a second time , yet again my world does not stop nor does it go into lockdown and continues relitively normal I still do my sign language classes ,lock down 1 this was taking place on a virtual level via facebook live and zoom the same with choir so that we can still complete our qualifications and keep practising . Whereas lockdown 2 choir wise after 7 weeks we are back on zoom continuing rehearsals and having fun and for the time being level 3 sign class is one week in class, one week on zoom which is working well and enables us to still be able to work towards our qualifications.

The main part for me which hasn’t stopped is work I am still going to work as normal as social care and health care cannot and does not stop. Ever.We can’t if we stop then more lives are at risk and this would be far too unsafe.

Is it hard working what is deemed as being the front line? Yes and No ,

No because this is my job.Those of you who don’t know I am a support worker and I support 4 young ladies aged between 25-34 years old with learning disabilities that live in residental care.

So no it is not hard to continue to go to work because this is my job, this is what I do and these ladies rely on us if we didn’t turn up for work we would be endangering them.

However yes there have been elements of working throughout lockdown that have proved challenging, my energy levels have at times hit rock bottom where I’m working anything up to 80+hours a week at times working 6-7 days a week but for me personally I would rather this than to know these ladies are alone, seeing unfamiliar faces on a daily basis and more importantly because I know they’re safe when we are around to care for them

What doesn’t help is when a lot of the public have the view so what?! It’s just the vulnerables at risk, I can still go out and do what I like, it won’t affect me those “just the vulnerables” are someone’s daughter, someone’s neiece, sister, auntie, cousin do they really not matter now? How would you feel if this was your sister, auntie, neiece, cousin and you were knowingly putting them at risk just to have a coffee, visit a friend ?

I just seriously urge everyone to stay at home and follow th3 rules because covid is serious whether you want to accept it or not, it is very real and for some more than others, this is the time for us to be pulling together as communities and protecting not only ourselves and our loved ones, but our neighbours, and rhe4wider community and look after everyone.

I know it’s hard, the first lockdown was especially tough for me being away from my family for 80+ hours a week not knowing if or when I would get covid seeing as I work with vulnerable people who are at a much greater risk, not knowing if or when I would get to come home and see my family, having to have difficult conversations about what if I got covid? How would I protect my family at home and prevent spreading it?

It has meant wearing a lot more PPE (personal protective equipment) such as masks for all of us which is a huge barrier for myself and the deaf community as I heavily rely on lip reading and facial expressions and this is something I can’t do but you know what I just get on with it becuase I have to, it’s tough yes but I have to just get on with it and help protect myself and others

We all miss our social lives having time to do the things we love but we have to pripritise what is seriously more important right now human kind health or going out for coffee, ignoring government guidelines, saving businesses, what’s the point if most of the population are going to be seriously ill or even dead, our businesses will suffer either way but following guidelines helps everyone to get back to normality quicker

Just please follow the guidelines, stay at home unless you have to go out, wash your hands and wear a mask it’s really not that hard an ask

Compulsory face masks

Published July 24, 2020 by goshgurl95

COMPULSORY FACE MASKS.

.today’s that dreaded day where masks and facial coverings are compulsory.. Nobody is particularly thrilled by this. However it affects some people more, like for myself being deaf..

I totally understand why face coverings and facial masks are needed to protect not only ourselves but also others and our more vulnerable members of society against covid and to ensure we’re doing all we can to look after our vulnerable members of society as well as in general for everyone. I absolutely agree yes we need to be doing this

However I’m deaf and feel more vulnerable than I’ve ever felt before with my hearing due to having to wear facial masks at work and now it is mandatory from today to wear them everywhere, this terrifies and isolates me make me vulnerable.. Why?!!

Becuase I’m deaf I cannot hear you with a mask on, with a mask or anything covering your mouth I cannot lip read you, i cannot understand or communicate with you or anyone..yes I technically am exempt from wearing these for this reason, however it doesn’t make it easier or help me if I do not wear my mask if everyone else is..

Pure simply because its me that cannot hear me being exempt from wearing a mask while everyone else wears then doesn’t help becuase I still cannot see your lips or lipread you, it’s me with the problem yet society isn’t helping by allowing me to not wear a mask.. This just isn’t the solution

I also have to wear a mask due to working with some of our vulnerables as I’m a support worker in a residential care home, no not with the elderly but with the more overlooked and forgotten, I support 3 beautiful YOUNG ladies with learning disabilities, I have to wear my mask to protect them,your vulnerables are my everything these people are exactly that human beings, they laugh, smile, they enjoy life, they are daughters, sisters, aunties, they are someone’s loved ones and family and they deserve protection from something that could have serious consequences and be detrimental to their health

Regular masks terrify me outside of my work place, becuase outside the safety of my work place where my colleagues and the ladies I support are aware I’m deaf and know how to help and support me, society and the local community doesn’t

however it is thanks to beautiful companies such as mama Memory Makes who make and provide clear masks that enable me to not only protect my beautiful ladies but other vulnerable people within my community, my parents, loved ones and myself and I feel like a part of society as I can communicate and lip read others and their facial expressions

For me what’s even better with these particular ones is the lovely lady who made them doesn’t attach the elastic until you order this is so that hearing aids and processors can be taken into consideration as it can make wearing ear loop masks more difficult, which is helpful for me as my microtia ear although reconstructed cannot hold the elastic on it so it’s great to not only have a deaf friendly mask but one that is adapted for me too

Society need to help everyone. When I’ve tried to highlight how important clear masks are to the deaf community and to me personally I have reccieved a lot of backlash, I’ve been told I should isolate, this isn’t a solution and only further isolates and segregates the deaf community, I also cannot do this becuase being deaf doesn’t affect my health and I have to go to work.

work.as well as this I would be climbing the walls if I had to sheild and stay home, I can’t do it for one day let alone months

I mentioned in my last blog some tips on how to help the deaf community and actually it would also apply to others with communication difficulties such as :

1) do not judge someone not wearing a mask you don’t know their circumstances they may be exempt pointing it out, judging or being rude doesn’t make that person’s life any easier.

2) be patient it may take us longer to respond or react, this is becuase we need to process what you have said and make sense of it a bit like with a crossword you may be given a few letters and have to figure out the rest, this is the same for us but in everyday life.

3)but transparent or clear masks so that your facial expressions and lip patterns can be read, this not only helps us to lipread you and piece together what your saying but we can also tell how your saying it are you happy, sad, worried etc as facial e is a huge thing for us, and actually it helps a lot of people with other medical conditions such as autism to be able to see your face too.

4) use other forms of communication use pen and paper I know so old fashioned!, type it on your phone, use speech to text relay apps, type it out on your phone

5)speak clearly and normal pace and flow don’t mumble, shout, speak too quickly or to slowly this distorts your voice massively and makes it harder

6) be understanding and help us out it’s not our fault, we’re not contagious and we’re all in this situation together so just help each other where possible

7)learn some basix sign we use your language maybe try using our language too

However those of us thst are deaf make it known, bexuasw deafness ia an invisible disability you can’t see deafness by looking at someone, there are some great sites that create badges, lanyards etc that explain about deafness, reminding others we lip read, we sign etc

Please just help each other where we can were all in this together let’s make it as easy as possible for everyone.

Lockdown Isn’t Deaf

Published July 16, 2020 by goshgurl95

Lockdown 2020, well where do I begin?!

It’s been a very testing time for many it’s caused many people a lot of mental health issues, it’s caused people a lot of worry and stress, a lot of uncertainty, frustration and the unknown Obviously it has been hard on a lot of people it’s caused a lot people to be furloughed, and have job worries etc

. I’ll be honest I am one of the lucky ones who hasn’t been furloughed and has actually worked all the way through, working sometimes more than my contracted hours and going in whenever needed even at the last minute , hence why the blogs have lacked a lot recently to begin with I thought everything would be fine. Work wise I’ve been crazy busy and literally haven’t stopped, hence why the blogs came to a stop. I’ve been in lockdown with my parents and dog and been regularly facetiming my partner David to keep I contact so I genuinely thought it would all be fine and plain sailing

Obviously yes I was wrong lockdown hasn’t been without its challenges and difficulties and without going into detail there’s been some very emotional and testing times for me and my family that only those closest to me know about.

Anyway… One thing that I have noticed from lockdown is that lockdown and covid19 are hearing related, they are not deaf friendly…

What on earth are you talking about Bethan?!? I hear you say.

Not one part of lockdown here in the UK has been deaf friendly or inclusive of the deaf community

For example every time there has been a big live updated on what’s happening with covid19, it’s Boris Johnson speaking, there are no live subtitles and anyone who uses subtitles will know how they are not always accurate. More importantly there has never once been an interpreter signing and interpreting the updates, which is utterly disgusting and has left many people in the deaf community confused, upset, angry, worried and worse of all feeling isolated having to try to get their information second hand from others. It’s just not on in this day and age. We need to be inclusive of all,but sadly we’re not.

This actually led to a campaign – where is the interpreter being launched, the only response that has ever been received when challenged as to why there is no interpreter present is becuase they cannot have too many people, it breaks social distancing and could further spread the virus.

All pathetic and nonsense excuses, there are ways. The interpreter can stand 2 meters away from others as everyone present should be anyway, and why when every other country can manage to make it possible, why can’t we?

The other things I’ve noticed about covid and lockdown that are not deaf friendly is things such as zoom, YouTube, Skype, video calling services etc. What I mean by this is obviously with lockdown we’re not able to see people face to face and a lot of things have gone virtual including my sign language classes and choir rehearsal. This is great absolutely it is as it enforces some form of normality throughout these crazy times.

I have been doing a lot virtually since lockdown began as well as choir and sign language, I’ve also been keeping in contact with my partner David via facetime, WhatsApp and other video calling and social media messaging, taking part in weekly zoom deaf quizzes. I’ve, also been using the likes of Skype, Microsoft teams and zoom for online work training which is great as it saves a lot of long distance travelling and its from the comfort of my bedroom.

However, you guessed it there is a but. It is fantastic living in a world where we have access to such much technology where things like this are possible and it really is but again this is not inclusive of the deaf community and we’re stuck in the world before technology.

Yes it is easier in some regards for deaf people to use technology as we can see people’s faces to read their facial expressions and body language and lip read. However not all deaf people can or do lip read and even those of us that do we do not pick up everything from lipreading so this still leaves a lot to guess work, it’s like getting a jigsaw puzzle and tipping the pieces out, you know the picture it’s supposed to make up but you have to find the pieces and put them together this is exactly what it is like for someone who is deaf.

Trying to assemble what someone has said from only maybe a couple of words or every other word out of a sentence is hard work, it’s exhausting and tiring. Technology is great but not all of these online video calling and chatting services have the option of subtitles and those that do such as zoom do not always work and can be very temporomental or it doesn’t correctly pick up what is being said. Not just this but not everyone uses technology further isolating those in the deaf community and who are perhaps of an older generation.

It’s even harder when there are multiple people on a call because the more people, the more people speaking, it’s knowing who is going to speak and when, turn taking which is non existing. I’ve also found in some situations that the more people the more the sound in a call is distorted, its a lot more focus when people move places on screen, constantly watching the screen, obviously the more people on screen the more to be watching and looking at and the smaller the person appears on screen. For some devices this means you have people on multiple screens so you can hear a voice but cannot work out who is speaking and there’s a lot of swiping between screens..

I did a Skype call earlier into lockdown for makaton training and I struggled badly with this due to the number of people on the course, different voices from people I didn’t know and led me to have chronic fatigue after and I had to do this for 2 days in a row and both days once we were finished I just collapsed on my bed.

I hear you asking why didn’t you explain to the tutor? This leads me onto my next point of lack of awareness.

I did tell the tutor as very early on in the first day I couldn’t hear the tutor he was just far too quiet for me to hear. What I got back in response well let’s just say he was not very deaf aware..

When I explained I was deaf he actually made jokes such as what, what was that? Which I believed, I mean being deaf I will always give people the benefit of the doubt with this one becuase I know I personally have to ask what a lot, or whether  it is someone being an idiot (that’s put very nicely, it’s not the word I would actually use to describe them).. This tutor was one of those idiots and could not understand why I didn’t find it very funny.

I expected better considering he is the makaton lead for the company and baring in mind he was teaching makaton, a form of communication

After he finished making jokes he actually told me “well if you can’t hear maybe you shouldn’t do the course” and told me how I would have to wait and do it one to one and how I was being difficult and essentially made his job harder… I didn’t leave out of principle and instead struggled while he continued to make jokes and laugh at myself and another gentleman on the course who also told him he was deaf… Safe to say I didn’t leave a great review on his evaluation form…

It’s not just idiots like this that clearly have no deaf awareness and make life harder, in regards with covid if we do have to go out were told we need to keep a 2meter distance from other people to prevent the spread of covid, which OK yes reasonable and fair but again is a challenge for those of us who are deaf as it means we cannot stand close enough to others to always be able to pick up on speech or lip read.

It is great how much information we have been given regarding covid and lockdown but the majority of this has been verbally communicated rather than sign posted or written unless on social media but as mentioned earlier not everyone has access to the Internet or uses social media so again this is isolating and frustrating having to rely on others

The big one though..

Face masks /facial coverings. These are essential to keep us all safe and in preventing covid

From a deaf persons view though these are awful things, why?

Simply becuase when you have a facial mask or covering over your mouth it stops our communication, we cannot lip read you which is a huge thing for us, we cannot read facial expressions as all we can see is your eyes, yes the eyes and eyebrows do show facial expressions, however they are not alone are not enough. As well as this facial masks and coverings make your speech harder to understand and it is very distorted, muffled and unclear for us and I’m sure this is possibly the case for hearing people too, this for those of us that are deaf is so isolating and so scary it makes simple things like going to the shops for a pint of milk and a loaf of bread so scary, what if someone speaks to us, what if someone calls us to a till, what if someone asks us if we need a bag or a stranger asks us something in an aisle or while we’re queuing to get in.

Mental health is a huge issue anyway but more so in deaf people the statistics are so much higher. and well looking at how covid is treating us it’s hardly surprising to see why is it

As stated on signed health website (a mental health support website for deaf people)deaf people are twice as likely to experience mental health issues and is it really so shocking or surprising after me pointing out just a few points and this is only in lockdown, there is much more that the government is lacking or ways things could be improved in a day to day basis to make life better and that bit easier for the deaf community.

Some ways you can help make things a bit easier during lockdown and actually some of these apply on a daily basis as well for someone who is deaf:

1) make sure you have the persons attention – we may not know you are trying to talk to us

2) be patient – it may take someone who is deaf or hard of hearing that bit longer to process what you have said or to respond to you or we may ask for repetition

3) don’t get frustrated – we may not hear or understand what you have said or that you want our attention but don’t get frustrated with us it’s not our fault

4) speaking clearly and normal pace and volume – speak clearly don’t slow your speech down or increase your volume, this actually makes it so much harder for us to understand you as it distorts your speech and facial expressions and makes it harder to lip read

5) rephrase – be understanding with us if we can’t understand you and we’ve asked for repetition a few times and still are not getting it, try rephrasing ask your question in a different way or simplify your sentence but remember we’re not dumb we just can’t hear don’t be patronising

6) write – if we cannot understand you or its a busy environment maybe try writing it down on pen and paper or type it on your phone so we can read it (with lockdown ensure you have pen and paper on you, this can be done better from a safe distance)

7) learn basic BSL- learn basic British sign language such as hello, how are you, can I help you, simple day to day things. We may not understand or be able to communicate in an oral way so why not learn our way of communicating

8) wear a clear mask- it is current guidelines to wear facial masks and coverings so why not get ones with a transparent shield so that we can see your lips so that we can continue to lip you and maintain a form of communication with you

9) remove your mask- if we ask you to remove your mask please do so, this is so that we can see your lip patterns and see your facial expressions so we can communicate with you better.

We can also help by making people aware that we are deaf this can be done in a number of ways wearing a sunflower lanyard, wearing a badge explaining our deafness, simply verbally communicating or writing down to someone that we are deaf or hard of hearing

Let’s help everyone to be more deaf aware and to help everyone get through this Pandemic as a beautiful quote I shared on Facebook said we are not all in the same boat, but we are all in their same storm support each other

Lots of love keep safe everyone xxx

Lockdown lovers..

Published July 16, 2020 by goshgurl95

Lockdown has been hard on everyone it’s caused worry, upset, confusion, distress, a sense of the unknown, a lot of people have faced furlough and or redundancy.

I would be lying to not only you but also myself if I said lockdown hasn’t been tough for me personally too.

OK to begin with I didn’t find it tough and pretty much continued as normal sign language and choir went virtual on zoom, I was and still am working throughout lockdown, I’ve been locked down with my parents and dog at home when I’ve not been working, OK it’s been hard not seeing my partner David but we made it work via facetime, video calling, texting, phoning and whatever

However it’s been tough more so for me  just before the 17th May when I had got home from work late Friday evening (15th May) and as usual went to facetime my partner David, he didn’t pick up. I suspected he must be in the bathroom and he’d call me back.. This didn’t happen instead David messaged me and told me he wasn’t feeling great,. Usually I wouldn’t have thought anything much of this,However

A few weeks previously David had told me that he had a pain in his side. Neither of us were worried and just assumed he’d sat or laid funny or maybe he had a water infection.. However when he messaged me telling me that he wasn’t feeling great, of course I asked what was wrong. David told me that the pain in his side was not only still there but had got worse to the point he could not sit, lay or move without being in pain. Instantly this set me off worrying.

David made the decision to ring 111 just to be on the safe side and I of course waited up to know what was going on. It too quite some time to get through where there’s obviously an increase with covid etc..

David was told to wait for a call back from a doctor, in the hours in between this was so hard knowing how much pain david was in and the fact I couldn’t do anything, I told David if it got worse to call me and I’d break lockdown rules and drive him to the hospital to get checked out, I was getting worried. The call back  didn’t come until gone 2.30am and he was told to go straight to A&E.

I annoyingly had fallen asleep and so I awoke at 5am to the messages saying he was going into hospital and how once he had arrived the doctor told David he suspected it was either kidney stones or an appendicitis, both two routine normal things..

Once David got to the ward he had blood tests taken which ruled out kidney stones so everything was pointing at appendicitis..  but

My worries were relived slightly I mean appendicitis is common and routine and at least we knew what was happening . David was put onto painkillers and morphine for the pain and had to wait for a scan later that day (16th May)

The scan didn’t happen until late on the Saturday afternoon and then began the wait for the results, mean time I’m at work during all of this awaiting news. Early evening the results came back confirming appendicitis

David  was offered to go home on antibiotics or to have an appendicetomy to remove his appendix .. After chatting to his parents and myself David decided to go the surgical route to get it all over with, so that the problem would be resolved, there would be no chance of it coming back or ending up back in hospital if antibiotics didn’t work .. Surgeons said they would operate on the 17th May..

All day I awaited news of when David would be going down to theatre.This news did not come. The surgery did not happen due to a miss communication.. I totally felt for David this must have been so hard on him as he had been told to fast so hadn’t eaten since having dinner on the 15th and was now told surgery would take place some time on the 18th May.

18th May if you haven’t already read was the day I had my BBC news and BBC radio Essex interviews, so I was nervous not only about these but of course about David. This is another reason my phone was going crazy with messages and calls from David and his parents keeping me updated on everything. I could easily have cancelled the interviews but was reminded that this was all routine and normal and chances were he would get to see it from the ward anyway, as his surgery was at 9.30am

Everyone was telling me how David would be fine and how I didn’t need to worry it was routine and normal surgery.. It just felt so different being this side of things, I’m so used to being the one going through surgery and being the patient so this was such an odd feeling.

However I began panicking and worrying when I hadn’t heard anything back from David since just before 9.30am when he was taken to theatre and by now I’d seen 11am, 12,1pm, 2pm, 4pm come and go and I felt surely by now he was done and in recovery. No news came… 5pm still no news, 6pm still nothing, I just felt something was wrong something wasn’t right and began panicking I’d tried calling and messaging David multiple times nothing, I contacted David’s parents they hadn’t heard anything and had been in contact with the hospital and were not being told much.

I tried phoning but the hospital would not speak to me becuase I was not family. This told me i was right to believe something wasn’t right and alarm bells began.

6.30pm.. I was told by David’s parents that he was in recovery. Still this did not reassure me I knew something wasn’t right having had multiple surgeries myself. 7pm David’s parents updated me and told me that he was still in recovery and there had been complications but they were not sure what as the hospital wouldn’t tell them but David was on his way to the ward.

7.30pm I had an online zoom meeting with Carol Cook my sign language tutor to run through my mock of an exam I was due to sit soon. I was a mess I couldn’t sign my exam piece, the exam piece had to be 4-5minutes in my mock it wasn’t even 2 minutes. Carol allowed me to redo it but it still wasn’t great, I had no words I was nervous about my exam and more so worried about David and awaiting his call.

8pm to take my mind of things I joined a weekly deaf quiz and although I couldn’t fully get into it I was distracted although my phone did not leave my side

9.30pm the news came..

Even now this is making me tear up… Surgeons had removed his appendix as planned, however his appendix were not as inflamed as they had expected but still they removed them.

However as said earlier there were complications.. They not only removed his appendix but had to also remove some of his large and small intestines due to inflammation and reattach the remaining small intestines to the large intestines..

Unfortunately this was not all

As well as this they had to remove part of his bowel for biospy, as they unfortunately found a mass… In some respects lucky becuase had David not have opted for surgery it wouldn’t have been found, unfortunately however they suspected bowel cancer

David now had an even longer recovery ahead of him as well as also awaiting biopsy results. This was incredibly hard to hear even now typing this I’m getting emotional. I instantly left the deaf community quiz, and told David no matter what it was we were in it together, we could and would get through it.

I was an utter mess I didn’t know what to think or what to do, my instinct was grab my car keys and drive as fast as I could and get to the hospital, be by David’s side and hold him…

I couldn’t do any of this though becuase of coronavirus hospitals were only allowing patients and staff in. I hated coronavirus for keeping me from my David. There is no where else in this world I wanted to be. Even now it pains me tgink about this.

I was due into work to do the sleep and had to leave in 10 minutes, I didn’t want to go but knew I had to becuase I have a duty of care to the ladies I support, I couldn’t let work down but it was also the last place I wanted to be.

I quickly text my senior to give her the heads up and was told if I wanted some time off nobody would ask any questions and totally accept it and I was told how I should stay home with my family I needed them perhaps more than I cared to realise. I told work I would be there.i began packing my overnight bag throwing anything I possibly could as quick as I could into the bag

I then had to break the news to my parents, well it was safe to say I was an emotional mess and I cried a lot. They were shocked but told me everything would be OK and to stay positive, mum recommended maybe I took the night off but I needed something a distraction.

I went back upstairs continued packing my work overnight bag although couldn’t even think straight. I grabbed my keys and set off for work ugly crying screaming the whole way, this could not be happening, not my David. I got to work and had sorted myself out until my colleagues opened the door (I had given them the heads up) and well that was that I was off in tears again, it’s safe to say I didn’t get any sleep on my sleep in shift and I sat downstairs in the office until early hours before even attempting to go upstairs to the sleep room, and sat there sobbing, pacing the room I didn’t get any sleep. Next morning I tidied myself up, put on a brave face and went to work beginning the morning medications… By 9.30am I was sent home and told not to go back to work until Friday and just to take all the time needed

This was lovely but also made things harder because I then had 3 days of sitting at home, pacing, phone constantly by my side, not sleeping or eating with worry.

David was in for a week and it was the hardest and longest week, it was not straight forward he was very unwell and honestly I genuinely on a few occasions didn’t think I’d ever see him alive again, as he began passing blood, passing out, was in so much pain, had an uncontrollable temperature of over 40 that staff battled to control and bring down for over 48 hours, infections to the surgical sites, there were days David would call me and be disorientated and hallucinating, or when he couldn’t stay awake for more than a few minutes a day . I worried with his temperature being so high what if he now had covid on top of everything else? Thankfully he got the all clear for covid. 21

It was hard, testing and scary for both of us. I’m not religious however I did turn to some very close friends and began praying with them for David’s health, I’ve never prayed or prayed as hard as I have recently What was also hard was on one of the days David was desperately unwell and I honestly was waiting for a call I never want to receive I had to do one of my sign language exams, I was offered to postpone but all I could picture was David telling me to do it, and so I sat the exam that was the hardest 10 minutes being away from my phone but I knew David would want me to do it and wouldn’t want me to postpone

Thankfully that dreaded call never came, it was hard not being able to run to my phone and talk to David after like I would usually but I was just so thankful he was still here.

Thankfully David did it make it home, honestly far too early for my liking so this caused more worry for me I just couldn’t bare anything happening to him. I’ve always loved David but seeing David this desperately unwell like I had that week showed me how much David means to me and just how much I love him, it’s way beyond words and I’m tearing up again saying this (I did last night on the phone to David too)

One evening after work I called David and he text back asking me to give him a minute, 10 minutes later my gut instinct told me something wasn’t right so I sent David a couple messages which he didn’t reply to, this is very unlike David, 15 minutes, 20 minutes still nothing I tried calling he didn’t pick up.. 25 minutes later I called again and David’s mum answered the phone…

You can probably guess where this is going… David was not very well and ended up being rushed back into hospital again early hours.. The emotions, sickness everything came back all over again I had no idea what to do with myself all I wanted was to be by David’s side and it was the only thing I couldn’t do.

I panicked fearing the worst what if it was cancer and they hadn’t got all of it and this was causing him issues, as we were told it would be 6 weeks until biopsy results came back.. Was it another infection? Was it another complication?

Turns out where they had sewn the remaining parts of David’s small and large intestines together, fluid was leaking from this onto his stomach which was what was causing so much pain and discomfort, this led to scans, talks of further biopsies, possible further surgery..

In the end they decided to keep David in for another week and monitor him in the hopes that his body would be able to reabsorb the fluid.. This scared me what if it didn’t? What if it turned septic and he ended up with sepsis?

Thankfully his body did absorb the fluid and after a week in hospital David was Discharged and this time with antibiotics to ensure it killed any infection off.

It’s been incredibly difficult to keep away from David as obviously both times when he was Discharged he then had to self isolate for two weeks, it’s been long, trying and testing and finally after 6 weeks of waiting we got the biospy results…

I felt sick to the pit of my stomach when David text to say the results were back, I remember telling David whatever it was we were in this together and we would face anything and everything together, we were a team and how I’d be there every step of the way holding his hand… There was a long pause… David then burst into tears, I then also burst into tears…. I would say David didn’t have cancer, however I’d be wrong to say that becuase We didn’t have cancer, why do I say we and not he? Purely becuase we are a team and David wouldn’t have it alone if it had been positive then all of us involved would have it because we’re a team and family.

A negative result was the best feeling there are no words and will never be any words.. Lots of happy tears though

It has honestly been one of the toughest things to deal with, it’s been an emotional roller-coaster e ever had to go through, at times I’ve only had elsie a soft toy elephant David gave me that connected me to him to cry into and hold tight purely becuase it smelt of him , but you know what none of that matters becuase I have David, we have each other and I would say its made us stronger as a couple and our love has definitely grown a lot stronger for each other too..

Of course as soon as I possibly could I began seeing David for social distance chats on his front garden, social distance walks, socially distanced lunches and bbqs, I’ve been asked isn’t that hard to keep your distance?

Honestly yes and no, no becuase i would rather see David from a safe and social distance than not at all and honestly I’ll take anything I can get becuase after thinking the person that completes you may not make it, you take every moment and hold onto those moments and cherish them, you count every second, becuase life really is so precious but yes of course it was hard becuase I just wanted to squeeze him (gently of course) and hold him but honestly anything to see him in person and see his infectious smile is enough, we have each other and I love him so much i don’t know how I got so lucky

A huge thank you to both my parents, David’s parents, our families and those closest to us for keeping us both strong and surrounded by love xxx

Goshgurl95 faces 500!!

Published July 15, 2020 by goshgurl95

Wow I don’t even know where I begin with this one guys. This genuinely is a blog I never in a million years expected to be writing and honestly still can’t quite believe I’m writing this.

Before I reveal what on earth I’m going on about unless you’ve already worked it out from my title or seen it on my Facebook page, I cannot believe I’m saying this but Goshgurl95 Facebook page has reached 503 likes.. Like what when did this even happen?!! How?!!

This is all insane and I genuinely feel like I’m dreaming. The whole Goshgurl95 journey started with this very blog back in 2011.

I started up Goshgurl95 purely to help one other person to prevent them from feeling alone in the world and like they were different, and shouldn’t and wouldn’t be accepted for who they are,or seen just as a medical condition. Just like I did.

I knew I couldn’t live with myself if I did nothing and allowed someone else to grow up feeling how I felt, it wasn’t pleasant at all and something I wouldn’t wish upon anyone to have to go through.

So I did the only thing I knew how and took to my laptop and wrote, something that’s been a real passion of mine since I started infant school I’ve always loved writing.

I didn’t quite know how or what I would write but I knew I was ready to share my story, my medical conditions, my experiences with my medical conditions and being in and out of hospital for operations and treatments as well as my experiences with bullying. I wrote honestly and openly as I hoped my blog would help one other person, if it did I would be happy with that and strive for nothing more.

I never dreamed it would go on to having 503 Facebook likes I didn’t even dream of anyone besides my parents maybe even read my blog. And so Goshgurl95 was formed I chose to write honestly and openly becuase there would be no point making out everything was smooth and plain sailing becuase that would be no help to myself or anyone else..

A few months into my blog it some how got picked up by my local paper, who wanted to run a story about it and how I was trying to take my life back and in their words, blog out the bullies.

Well from there Goshgurl95 grew beyond my wildest imaginations or anything I thought ever possible.

A couple of months later saw the start of Goshgurl95 Facebook page, purely becuase I was posting blogs onto my Facebook account and some of the people on my friends list were getting fed up of seeing them, were not interested in the blog and also becuase I had people who had read my blog that I didn’t know wanting to add me which I was not comfortable with, so I decided to set up a separate page just purely for the blog and all things medical

As the months and years went by I began to be asked by publishers if they could run my story in The sun newspaper, great ormond street hospital teenagers first for health website, great ormond street hospitals blog, gosh members matters magazine, that’s life magazine, more for my local newspaper, teachers of the deaf magazine and so on.. .

My blog began reaching families in Australia, America, New Zealand and I was approached by America charities and bloggers to share my story with them to help.

Some how in the last two years I’ve gone on to win a jack Petchey award, be interviewed by BBC news, interviewed by BBC radio Essex , and some how win a rotary young citizen of the year award.., my little project has absolutely grown beyond my wildest beliefs, GOSHgurl95 now has her own logo.

Do I deserve this? absolutely not.

This has been the most incredible journey watching my blog come to life, grow, seeing not only my blog but also myself doing things I never expected,from speaking at charity launch parties, winning a jack Petchey or a rotary young citizen award, meeting some of the most incredible and amazing people along the way that I am so grateful to have in my life including Carol Cook for giving me the opportunity to learn sign language, getting me through my level 2 British sign language qualification and for putting up with me for another year for level 3 and generally for being so accepting, supportive and encouraging , Paula Parker for teaching me level 1 BSL and putting up with me for a year again for always being encouraging supportive and believing in me both yourself and Carol were the first people besides my parents to ever believe in me and for that I’m forever grateful as my confidence slowly is hopefully starting to grow and develop and I owe this to you as well as for helping me connect and become part of the deaf community.

Sophie Barnard for being the best friend I could have met and who knows this journey well and is only ever a message away.

The beautiful Agnew family for allowing me not only into your lives but into your beautiful daughters life watching rebekah grow has been a real pleasure I cannot thank you enough for the opportunity.

Ann Sargent for being incredible from the get go all things baha and hearing related for never getting fed up with my on going worries and questions

Debbie Farrow for being the greatest friend I could ask for always including me and adapting so I can hear and follow in all situations

All the lovely ladies at hands 4 voices who have welcomed me in and accepted me and welcomed me into our dysfunctional family I love each and every one of you, you don’t know how much joy you bring to my life

DSO classmates for again being incredibly supportive and helpful even if I’ve never heard of or used an idiom and you’ve had to explain them to me or repeat things a billion times I wouldn’t be where I am without you.

My fantastic parents Julie and kev Harvey and incredibly supportive partner David well I wouldn’t be here without you guys always being there every step of the way picking me up and carrying me even when I thought and felt I couldn’t go on you guys are my foundation that holds me up and pushes me forward, keeps me going, pushes me back up when I’m down I love you guys so much.

The incredible teams at great ormond street hospital in particular Neil bulstrode, gaynor osman and brigitte I wouldn’t even be anywhere near to here without you or your continued love and support

There have been more times than I care to admit that I’ve felt Goshgurl95 has run it’s course, that’s she’s out of steam and debating shutting it all down, but some how some way, all of you keep me and Goshgurl95 going and I cannot thank you enough for the phenomenal journey you’ve taken us on, I cannot believe the love and support

I don’t deserve the awards or recognition, its you amazing 503 people that follow my blog, read what’s going on and just are supporting everything I thank you from the bottom of my heart much i love you all so much this has been one crazy journey, wow 503 I’m at sure if someone pinched me now I’ll have dreamt this whole thing, thank you so much this journey wouldn’t be possible with out any of you and I look forward to seeing where the future leads lots of love, hugs and tears 😘😘😘xxxx

BBC Radio Essex..

Published July 15, 2020 by goshgurl95

18th May 2020 after finishing up my BBC NEWS interview with Simon McCoy just moments before, discussing winning a rotary young citizen award 2020, I had a few moments very literally to go and get a quick drink before going and setting up for BBC Radio Essex where I was being interviewed at 3.30pm

Like with the BBC news interview I had to be set up earlier than air time and have a quick run through with a producer to ensure everything was this time sounding alright and not too echoey and that I could hear them well enough and vice versa.

I waited literally maybe a few minutes before I got the phone call from one of the producers and again they asked for my name before connecting me to the next producer, this took slightly longer becuase unlike the news the radio was all being run from their homes due to the corona virus and the lockdown

It took maybe a couple of minutes to be transferred across to the second producer Tom parson Wright . Once connected with Tom we had a quick chat and I was congratulated on my rotary young citizen award and for the interview with BBC news as apparently they had set up all of their screens to play the interview. We then did a quick mock interview and then it was, as they say show time..

I was then connected to Tony Fisher and was asked by Tom if I could hear a music track in the background which I said I could, I was told once the track finished I would be live on air with Tony Fisher and how he would briefly speak and introduce me before inviting me onto the air and beginning our interview.

This was strangely probably more nerve wracking than BBC news was, I’m not quite sure why though as I honestly expected it to be the other way around, I think where I only had audio to go on, on my phone rather than looking at a blank tablet screen and speaking to it.

I don’t know I’m strange…

After the first question or two I relaxed into it more, I think maybe the reason I felt like that with this one is becuase it didn’t feel live and felt like I was just having a phone conversation so was more pressure to not mess up and to get it right, not to stumble or whatever.

Thankfully as I say after the first question or two I relaxed into it and honestly I don’t know why I worried as Tony was so welcoming and friendly. Again this interview seemed to have just flown by.

Once the interview was finished I was passed back to producer Tom larson Wright and thanked for my time, it was at this point that I asked if there was anyway of having the interview transcribed or subtitled so that the deaf community could access it, this was something that actually stumped them and I was told they’d never been asked before but they would look into what they could do to make it accessible to everyone.

Once I was off the call I again went downstairs to see my parents and found them both in the kitchen/diner huddled around Alexa listening to the radio and mum with her phone in hand recording the interview for me… Again crying 😊

A little while later I got a WhatsApp from Tom Larson Wright thanking me again for going in air and talking to them and also to let me know he was still very much looking into how to make the interview accessible for the deaf community.

Later that evening Tom emailed and he did not disappoint, he had managed to type out the full interview and transcribe it for me which was very helpful and very much appreciated by the deaf community. This is something I will always be passionate about is including the deaf community and ensuring everything is accessible so here it is…

The recording and then the transcript of the interview can be found directly below

BBC Essex Afternoon Show Interview – Monday 18th May 2020

TONY:
It’s BBC Essex back to the seventies with Tavares and Heaven Must Be Missing An Angel.

Well a support worker from Witham has won the Rotary Young Citizens Award.

24 year old Bethan Harvey works up to 80 hours a week at care home Mandalay House, supporting young women with learning disabilities.

She was born with congenital issues which affect her hearing, and underwent her first surgery at 4 months old.

Since leaving school Bethan has done LOADS to help others, she raised £25,000 for Great Ormond Street Hospital and volunteers at Families of Deaf Children Essex Youth Club.

And I’m delighted she’s on the line to me now, Bethan a warm welcome to BBC Essex.

BETHAN:
Hello, thank you.

TONY:
I’ve got the telly on in my room here where I’m sitting at the moment and I think I just saw you on the television didn’t I?

BETHAN:
You possibly did yes. *laughs*

TONY:
*laughs* Good to have you along today, first of all tell us a little bit about your story growing up Bethan.

BETHAN:
So I was born with a condition called Microtia, meaning I was born without my right ear.

And growing up at school, I was bullied really heavily through when I started junior school to the day I left school.

It started off with verbal bullying, so I was told I was ugly, I was a weirdo, I was a freak.

And then as I got onto secondary school it progressed onto being a bit nastier and going onto social media, video calls and cyberbullying and then onto receiving death threats in school, and being told by children in my year group that if I didn’t go home and kill myself then they’d do it for me, and how my life is not worth living.

TONY:
And how did you move on from that Bethan?

What spurred you on would you say?


BETHAN:
It took a lot, but then when I got to college I met new people and I was around a different crowd of people that didn’t know me, hadn’t gone to school with me, and they began asking questions about my hearing and just took a bit more of an interest and were nice about it rather than being nasty.

I decided to set up a blog, goshgurl95, to just put information out there about my medical conditions and my journey with all the medical conditions just to help someone else cause I didn’t want anyone else to ever have to feel alone.

TONY:
And what was the reaction like to that blog?

BETHAN:
To begin with it was quite slow and steady and it was mainly friends and family and people that knew me reading it.

But then overtime it’s been shared around and I think last time I checked it was over 430 people following it and reading it.

It sort of spiralled from there cause then the local newspaper then picked up on the story and started running it in the papers, and now somehow I’ve won a Young Citizens Award.

TONY:
It’s wonderful to find out more details about you because you’ve been doing some great work, how else are you raising awareness for hearing difficulties?

BETHAN:
So obviously I volunteer for Families Of Deaf Children in Essex, supporting them through a youth clubs.

Since 2018 I’ve been learning British Sign Language, so I can communicate with other people, and this is something that I’m now campaigning to raise awareness of in schools.

I’m also part of a signing choir. Instead of singing, we interpret songs into sign language.

That’s Hands for Voices, which is also based in Essex.

As well as part of being a part of deaf communities, deaf meet up groups and trying to support other people online.

TONY:
And when did you first find out that you won this award?

BETHAN:
I was so shocked, I never in a million years expected to be nominated let alone to go on and win it.

So a huge shock.

TONY:
And how did you find out? What happened exactly? Was it a phone call or a letter or an email?


BETHAN:
Originally it was an email, but because I was out I didn’t receive the email so Witham Rotary actually phoned me and from my house to Tesco which is about a 5 minute drive, I had about 60 missed calls.

I thought oh maybe a bit of paperwork’s not gone through, something’s gone wrong somewhere.

Then I pulled into Tesco car park to be told that actually not only had they put me forward for it but I’d gone onto win it.

TONY:
And how did you feel when you were given that news?

BETHAN:
I was really shocked, I didn’t know what to say or how to react to it, it didn’t feel real.

And then going on the news a minute ago and obviously being with yourselves now, it hasn’t quite sunk in it just doesn’t feel real, that you know someone like me can go from the background I had to doing these sort of things.

TONY:
And tell me what things are like at work at the moment, at Mandalay House?

BETHAN:
Things are really good at the moment actually, I mean, obviously we can’t take the people we support out and about into the community.

So instead of taking them out, we’re doing a lot more activities at home.

We’ve done Disney Princess days, pool parties, garden parties and just laid on loads of different activities that we wouldn’t normally do just to keep them entertained, as well as linking them up on zoom, having time with their parents and their family, so they can still maintain contact with them.

TONY:
Well it’s great to have you on the show and I wanna say a huge congratulations Bethan, from all of us here at BBC Essex, it’s lovely to have you on the show today.

That is Bethan Harvey, who’s a Support Worker from Witham and she’s won the Rotary Young Citizens Award.

And isn’t it terrific to hear news like that, love those good news stories. And much deserved as well, amazing work that she’s doing there.

BBC News

Published July 15, 2020 by goshgurl95

18th May 2020, should have been just a typical day and also my mum’s birthday.

However I had known something very exciting but very different was going to be happening today, but I was sworn to secrecy… Months of secrecy.. Anyone who knows me well knows how much I love to talk so this has been mission impossible to keep quiet and under wraps.. I had probably kept this quiet since finding out I had won a rotary young citizen award and was told what would happen upon winning

A few week’s before the 18th May 2020 I had quite a lot of texts, emails and phone calls going backwards and forwards and it was finally confirmed on the 14th May I would be appearing live on BBC NEWS! However I could not say anything until 18th May once the press release had been released on the rotary website

First thing that morning started off as any other typical morning in lockdown (I’ll talk all things lockdown later on) with a morning zoom choir session with hands 4 voices the amazing sign language choir I belong to. I had to leave early as I had a phone call from BBC producer jack lampard but I was still sworn to secrecy and it was impossible not to tell anyone besides my parents, partner David and Carol Cook my choir leader what was going on, Carol was understanding as to why I would be in and out from the session

11am I got the phone call from jack Lamport BBC producer and ran to my parents bedroom where on trial runs over the weekend it was decided would be the best room for me to do the BBC interview.

We had a few technical issues with sound I could see Jack but had no sound so this took some adjusting and once sorted we ran through what would happen, when and how everything was aimed to play out today and did a few lighting and sound checks to ensure everything was working and looking good ready for the live interview later on.

Upon finishing up the zoom call with Jack lampard I returned to my choir rehearsal before my phone rang again. This time it was Eve Conway from rotary checking in on how everything had gone with Jack Lamport and running through a few final checks and bits and pieces.

By the time I had finished with this phone call I had a few minutes left of my choir rehearsal, before spending some time with mum opening her presents and cards, before again my phone rung and this time it was BBC radio Essex, my local BBC radio news station explaining how they had seen the rotary article and press release and had heard I would be appearing live on BBC news later that afternoon and how they were wondering if I would be free to do an interview with them straight after finishing my live BBC TV News interview, I was so shocked by this but of course accepted.

Shortly after this I was given the go ahead to share publicly that I would be on BBC NEWS and BBC radio Essex, so of course the first place I shared this was to my GOSHGURL95 Facebook page as to me where else should’ve come first ad this is besides my blog and Instagram account the only other place I share my medical journey and information about it, besides I had left you all in a lot of suspense knowing something was happening, so I can’t of couldn’t not. Once it was posted on Goshgurl95 Facebook I shared it to hands 4 voices pages to explain why I had been in an out of session that morning, my own personal account, my parents then began sharing it with their friends too, it got shared on lots of other various pages too.

The day was manic my phone constantly ringing or buzzing with messages and updates on getting prepared for my interview. I also unfortunately on this day had a lot of personal things going on so my emotions were all over the shot and had phone calls, messages and updates from the local hospital so it was a very hectic day, my phone didn’t stop.

2.15 I began setting up and getting into position with my tablet, shutting my parents bedroom curtains, adjusting the dressing table stool just so and awaiting the call to come through.

2.10pm I sent my last update to my Goshgurl95 Facebook saying how I had 20 minutes to go

Sure enough at 2.30pm that awaited call from BBC NEWS came through on my tablet, I couldn’t see anything but a blank screen and was put through to a producer who took my name, wished me luck and passed me onto the next producer. This time it felt a lot more real, it was a lot harder to hear what was happening as I could now not only hear the producer but hear the BBC news theme tune going off in the background, and I was asked to hold the line for a few moments while the big headlines came up.

The producer then returned to me and began talking through what was about to happen and asked if I could hear the show and him which I could although this made it particularly hard on my hearing to work out what was going on as I could now hear the producer, the presenter and other background noises from the studio.

I couldn’t see anything I could only hear everything going on I just hoped and prayed I wouldn’t stumble or mess up as this was live on the big national BBC news, I was beginning to feel so nervous what would they ask, what would I say, more importantly at this point what was happening, who should I be listening to, had I missed any instructions.

I was told when I went on air to just sit still and look directly into the camera, how I would be counted down and the theme would play before Simon McCoy would speak before addressing me literally a minute or two before I went on air that I was up next and got before I knew it that minute or two was up and I was being counted down.. 5…4…3…2…1 and then heard the BBC news theme tune and then Simon McCoy began speaking and then that was that I was live on BBC news…

It was so surreal I was so nervous but weirdly none of it felt real even though I could hear myself on the TV downstairs where my parents were positioned listening to it. The interview absolutely flew by it felt like seconds although it was actually more like 4/5 minutes. I finished up and raced downstairs to my parents, mum was in floods of tears and full of emotion threw her arms around me and told me how she had never expected me to achieve so much in life and how they’d always been told I’d never achieve anything in life and how proud they were.

It was so strange as none of it felt real even when I had messages on Facebook, texts, WhatsApp messages, phone calls coming through it didn’t feel real just felt like I had dreamt the whole thing but was so amazing for me to be able to highlight just a few of the amazing charities I support and of course hands 4 voices choir.

Someone said to me huh what would thr bullies say now, but in some ways I would actually thank them because without them none of this would have been possible it’s because of how they made me feel that I work so hard to help others so much.

I was lucky enough to very quickly be sent through a recording of my interview and thanks to an amazing friend I was able to very quickly get the piece subtitled to share around social media so that the deaf community could also access it. For anyone that missed it or wants to watch here it is..

The Secret…..

Published May 18, 2020 by goshgurl95

So as you may all know I have for a little while now been keeping some very exciting news from you and have left you all puzzling what this could be some ideas have asked whether there is a ring involved, I can confirm David has…..Not proposed to me , there is no ring …

 

However yes I have been keeping secrets from you all and it has been incredibly hard to keep this quiet, as I just want to burst and tell you all …  I am still not revealing that secret and am going to keep that suspense going a little longer and talk you through everything from the very beginning…

 

It all started  on the 15th December 2019  (I know quite some time I’ve been keeping this secret!!!)  when I received an email out of the blue after my Great Ormond Street Christmas appeal made it into my local news paper  and the email simply said :

“Dear Bethan.

I am the Leader of the youth services group of Witham Rotary Club

We would like to consider you for our entry to this competitive award if you wish. and with your permission

You do not need to do anything extra to be entered for this award apart from telling us about your GOSH project

We will submit a document to the judges on your behalf

The latest submission date for 2020 is the end of February

Please reply if you are interested

Yours truly

Alan Purdy ”

I didn’t honestly think  much of this  but was totally overwhelmed and honoured by this and quickly sent a reply back to Alan saying :

 

 

“Hello Alan,
Oh wow thank you so much this means an incredible amount to me. What information do you need and what would you like to know.
Thank you so very much for considering me
Kind regards
Bethan Harvey “
We agreed that we would get in touch in the new year after the christmas rush as both myself and Alan were busy and it was now coming very close to Christmas. I was so shocked to have been asked to  be put forward for the award, as to be honest I don’t do my blog or any charity work raising funds or awareness for the recognition  or  for rewards or what have you , I just do it because I want to help and because well I love what I do really.
Anyway in January I agreed to meet up with Alan to discuss everything in more detail as all I knew was this one email I had recieved asking if they could put me forward for the award.  So I was curious and had a lot of questions including:
  • why me ?
  • how have they found out about me- I mean yes OK they saw the article about my GOSH christmas donation but how had they got my email ?
  • What even was this for ?
  • What was this award all about?
  • what did this mean and what does it involve?

 

So a lot of questions I was so nervous about meeting Alan as I had never met him before and well I just had so many questions really I was excited but defintely nervous about it ,As I said earlier I just am me and I just do me, nothing more nothing less I am just me being me .I had no idea what questions they would have for me , how would I answer them? It was really nerve wracking so I actually talked David in coming with me as I was so tempted to call the meeting off , I did not and deserve an award or any recognition there are people out there doing a lot more than me and I am not doing anything special at all.

 

Anyway so me and David went down to my local costa coffee and met with Alan, his wife and a female collegue of Alan’s from Rotary club, Janice .I was so nervous I had no idea what was going on really.

 

Alan explained how they had seen my article in the local paper about my christmas donation to Great Ormond Street and that I had been nominated for the award for this reason and we got chatting about my reasons behind setting it up, my time in GOSH , growing up different, my expirences growing up with bullying, We got talking about my hobbies and interests and other things that I do or am involved in so we got talking about:

 

  • Microtia UK and how I do charity runs and events for them  and offer support on the facebook support groups and generally raise awareness of them

 

  • GOSH and the work they do ,charity events I have done for them since 2009- now really

 

  •  learning British Sign Language, my reasons why, where I want to go with learning sign and future goals

 

  • Hands 4 voices  signing choir, discussing why I joined , what the choirs aims and goals are , about performances we have done as a choir, why it is so important to me to be part of Hands 4 voices and learning sign language

 

  • girlguiding ,how and why I became a Brownies and Guide leader ,how and why I went on to doing peer education training through girlguiding , how long I did it for

 

  • my blog ,why I set it up ,what my aims and goals are with the blog

 

  • Volunteering for FDC and why it is so important for me to be involved in Families of Deaf children’s youth club

 

  • Being a committee member of EDCS

 

  • Charities that are important to me and why I raise awareness of them  and how I’ve raised awareness such as newspaper articles through my blog , jack petchey award,

 

  •  my full time work as a support worker to young women with learning disabilities and why I do what I do

 

 

They asked if I would send over some photos and pictures of things I have done and been involved in and discussed the award some more telling me how it was an incredibly tough award and how they have put nominations in before but have never had anyone win but how they wanted to put a file forward to Essex Rotary club to support their nomination  , which I was happy for and I was then told I would not hear anything after the write up of the information I gave at this meeting until  April time .  I left feeling like things had gone well but I expected this would be the last time I would hear from them and honestly I would have been more than happy with that.

 

A few days after this meeting I received the write up , however I was not totally satisfied or happy with the write up as there were a few errors and a few things that were inaccurate or just did not read right and I just needed and wanted to tweak so I edited and re wrote it and sent it back , I was so worried I would be told off for doing so but I do not win awards or do what I do for the recognition, However if this was going to be sent as a nomination I wanted the facts to be correct otherwise it was not worth doing.

I sent it back and it was accepted ,I did not expect to hear again.

However I got contacted by Alan again just before valentines day this year asking if we could meet  up again ASAP as a piece of paperwork had been missed and needed signing and I still did not really think much of this and again went along to costa coffee and met Alan and his wife to get the paperwork signed off .Alan began telling me more about the award  and how the competition was going to be really tough and how he did not think it likely I would win which I had never expected to win anyway and was happy enough with even being considered and put forward for a nomination .

 

 

28th February I was on my way into town to do a few bits , nothing exciting  really when I received a phone call from Alan because I was driving I could not take the call and didn’t think much of this until my phone would not stop ringing .I sent Alan  a quick text and asked if everything was OK and got asked if I could phone him ASAP , I  assumed there was some more paperwork that needed signing or what have you. I did not expect what was about to come …

I phoned Alan back but it went to voicemail so I dropped him another text just to let him know I had tried to get in  contact but was not able to do so .

Alan asked me to try again and this time I was able to get hold of him, I was very confused as to what was so important and why I needed to ring him .

 

I was told that Alan had some news for me and quite honestly I expected for him to tell me that my nomination had been unsuccessful or that I did not meet a requirement or some form of complication.. I never expected what was about to come. I was told I had not won for Essex and honestly I was absolutely fine about this I knew that the competiton was tough and I had never expected it to go anywhere and thanked Alan for considering me a possible nomination and expected that to be the end of the phone call or for him to maybe say about Rotary club supporting or something.. However it was the next bit that threw and well still has completely thrown me.. I was told no I had not been selected nor won for Essex…..

 

However I had been selected as a winner across the whole of great Britain and Ireland…Wait…. What?!! I was so confused this did not hit me or sink in I was so overwhelmed and confused, I mean my ears are awful I clearly had heard him wrong…. No apparently not….

Alan explained this meant I needed to be free on the 1st and 2nd of May as I would need to go to Birmingham expo centre to receive my award, I was told that this is usually presented by a celebrity and broadcast live on TV… eekkk soo super scary… I was told how Rotary and the event organisers would sort out my accommodation and travel and I was so shocked , none of the conversation hit me , I just was in pure shock.

 

Once I got off the phone to Alan still in total shock and not quite sure what had just happened I quickly phoned mum and told her , it was only as I heard my mums voice tembling and could hear her crying it started to hit me, not fully though mind ,although it still hasn’t fully hit me yet.. I just felt like I was dreaming in some sort of make believe fantasty world things like this do not happen to me and I could not and still cannot get my head around why ..

 

I was told to expect a phone call the following week from a lady called Eve Conway who is the president of Rotary…. No big deal then ?!!…

 

7th March 2019 I received the phone call from Eve Conway congratulating me on winning and I was told a lot more information about everything. I was told that I was 1 of 6 selected across the whole of great Britain and Ireland out of thousands upon thousands of nominations.. and how the reason I had heard back so much quicker than expected was because apparently all of the judges were unanimous and had all been in agreement on selecting me… this was utter madness to hear, I just could not believe this.

 

I was told I would be needed on the 1st of May by 4pm in Birmingham to meet Ellie Crisell  TV presenter for the BBC so that she could get to know all of us award winners and get to know our stories better as well as sorting out staging arrangements of seating etc.. and how on the 2nd of May I would then be presented with my Rotary young citizen of the year award and that this would be presented by Ellie Crisell and how I would be interviewed by her and the event would either be filmed and played on the BBC or would be live on the BBC doubly nerve wracking…

 

I was also told that in previous years a few weeks before the event that most of the award winners will be invited into their local or London BBC Television studios to be interviewed about being a rotary young citizen award winner.. OH MY as if things were not scary enough !!

 

Eve explained to me that they like to play video footage of the award winners doing whatever it is they have been nominated for so that they can be seen in action and asked whether it would be possible  herself and a camera man to come and film me doing various things although she was particularly interested in video footage of Hands 4 voices choir , FDC youth club ,Great Ormond Street  and my blog .  I was told to keep it quiet from you all a little longer , as those who had not been selected to win had not yet been contacted and would not really be fair for them to find out in this way , and also because press releases would have to be completed before hand too , so I have been under strict instruction not to tell anyone other than family ,friends and charities -that I was nominated for as they would need to know so that I could gain permission to be filmed for the video footage.

 

I got off the phone to Eve and phoned mum to update her on everything before calling David and letting him know the update on what was going on , I then spoke to Carol Cook my sign language teacher and choir tutor to gain permission to be filmed at our rehearsals which Carol was absolutely fine about, I then started a group chat with Yvonne Green, Daniela Galova, Debbie Farrow and Keighley Miles all from both EDCS and FDC, and explained to them and asked if it would be alright with them for me to be filmed at FDC youth club again they had no issue with this at all.

 

I then sent and email to Neil Bulstrode my incredible consultant and surgeon at GOSH and copied Neil Mccintosh Peter Panther ward manager in to see what I would be able to do at GOSH that could be filmed , as I had already planned to do an Easter donation of books and crafts and asked if it would perhaps be possible to be filmed doing this and sitting doing the craft in the play room with the children and or reading them a story , as I have no filmed footage of my Christmas donation otherwise I would have used this, I also asked if they had any ideas of anything I could do that would be OK for me to be filmed doing

 

 

I wil be live on BBC news channel 503 on sky pr 601 on virign with Simon McCoy just after 2.30pm on Monday the 18th May 2020,followed by BBC radio Essex at 3.30pm

Loosing Leftie…

Published March 27, 2020 by goshgurl95

If you have read any of my previous blogs you will firstly know that I was born with microtia to my right ear and therefore as a result was born with no hearing to my right ear due to there being no ear opening, however at the age of 18 I was fitted with a Bone Anchored Hearing Aid ( BAHA)  and will know that over the past year I have been without my BAHA due to infections..

You may also remember that at the age of 16 I was diagnosed with bilateral sensorineural hearing loss, meaning my left ear had now developed a hearing loss.Now it was never 100% and has always been slightly below normal but had never been to a concerning level or to a level where anything needed to be done about this..

 

However at the age of 16 it was picked up on a invasive hearing test where I was in the typical booth for air conduction hearing tests (where sound goes into the ear as it should) via headphones, I then had bone conduction tests and a whole bunch of others to test the overal state of my hearing as part of the process of getting my BAHA for my right ear, and it was only then my left ear got picked up and identified as having a hearing loss and I was rushed through as an emergency to get a hearing aid fitted as it had dropped a lot and action needed to be taken..

 

Well….. I have not had my hearing tested now for about 5/6 years this is through no fault of my own or a lack of trying.. I have on multiple times spoken to my consultant and said I wanted my left ear tested and was reassured that my left ear was fine and how the BAHA would be able to  deal with the hearing on both sides and that I didn’t need my hearing aid anymore and how everything was fine medically with my left and I was just worrying ( I am a massive worrier) , so i accepted this and was like OK fine this is a medical professional working at a specialist ENT hospital he knows what he is talking about .

 

However when I still was concerned something wasn’t right and again at another appointment mentioned my concerns I was told to wait until my next appointment with audiology and speak to them about this…. Now… This was the next issue I had not seen them in a couple of years at this point and I told my consultant this, and was told that audiology would be in contact with me, OK fine again I accepted this and awaited hearing something (pardon the pun this was not intended)

 

I never did hear back from audiology and when I next saw my consultant I asked again and again expressed my concerns for my left ear and was told I would get a letter from audiology with an appointment, I explained that this had not happened and how the last time I had my hearing tested was just before I got the go ahead for my BAHA ( November 2013)  and then it was just checked quickly with speech tests when I got my BAHA fitted , and how surely I should be being seen every year for hearing tests? especially so now knowing that my left ear had a loss and that this obviously could change or my hearing aid could need adjustments or what have you?

Still nothing and eventually I gave up trying as I just thought well it must just be me being daft and over  thinking and worrying about things as even when I said my left hearing aid was not working this did not seem to concern the hospital nor did they do anything about it, It was only that I twice tried to sort it myself, firstly going to a local walk in service in my local health centre where every so often a charity called  Hearing help Essex go and do hearing aid repairs and I got them to take a look and they retubed my hearing aid and cleaned it out and it worked again for a while, but then stopped working again and the hospital told me how I shouldn’t be using it as my BAHA communicates to both cochlear and this would be enough, so I explained I had gone back to using it as I felt my hearing in my left ear was suffering and was told I didn’t need it. Now this was a good couple of years ago

 

It was only when I was without my BAHA for nearly a year that I dug it out and began using it again, However I didn’t like the sound quality I felt like I was underwater and as though everyone was speaking very weirdly it was awful so I had no choice but to not use it as it was just a hindrance rather than a help.

 

As you will know if you have read any of my more recent blogs I have been increasingly worried about my left ear and have felt like a lot has changed in terms of what I can and can’t hear such as I am now fully relying on subtitles on my bedroom TV because sound wise i get told by my parents to turn it down as they can hear it over their TV, my car radio is on full volume and it still does not seem loud enough for me and I’ll still be sitting their trying to turn the sound up until I realise it can’t go any higher, a work colleague actually commented the other day when I got to work to do the night shift that she had gone outside for a smoke and could hear Ed Sheeran playing and how she assumed someone had driven past with it loud and then realised she could still hear it and realised it was me in my car and told me how she could hear every single word of the song and the music too and yet I was quite a way from her.

 

I feel socially I cannot hear barely a thing and am soley relying on lip reading or if I am with my boyfriend David , choir or signing friend that I am relying on sign language and lip reading to communicate because I cannot hear..

Even yesterday when I went up to London with mum and her two friends walking into town even standing with my good ear facing mum or mums friend I could not hear them properly and was missing a lot of the conversation and using guess work to work out the missing parts ..

Choir I feel as though I can hear the base of the music but I am finding myself struggling more than ever with hearing the lyrics, now this isn’t new I have always struggled with hearing lyrics in songs and mishearing them or not being able to work out the odd word here and there, however now I am just about hearing the words at all let alone mistaking them ..

I have been so nervous to book a hearing test to know what is happening because since as long as I can remember loosing my hearing has always been my biggest fear, OK it’s not my biggest fear and I don’t know now really if I would regard it as a fear as such .

However that said does it still worry me if I were to loose my hearing absolutely. why?

Purely because if I am going to be honest with myself and well I might as well be as there is no point lying I know at some point I am going to loose  my hearing.

No this has not ever medically been told to me, however let’s be real this is reality for me and always has been the reality but I think I’ve known this more so since the age of 16 when my left ear required aiding.

I mean if it already has a loss yes it is possible for it to be maintained but of course there is an increased chance it will continue to deteriorate .

However my worries remain with work what in time will happen in terms of me working and having a career if I cannot hear as this will possibly mean I  cannot go onto doing interpreting courses once I eventually get to level 6 qualified in BSL as how can I interpret if I can’t hear and so then as well what happens in any job I have if I cannot hear? , my parents and boyfriend do not sign so I would be unable to communicate with them ,although yes David does know the basics, I have always know I want my own family some day and to have children will I ever get to hear my baby cry? ,These are very much still unknown so I don’t like to worry about these things until that time comes , it comes and will deal with it as and when it happens .

 

I decided I needed to bite the bullet and booked a hearing test at a local specsavers  despite my gut instinct and nerves telling me I knew the answer and the outcome of this hearing test .

I just had to know and find out what was happening , yes this was scary and this does not get any easier for me , as every-time so far my gut has told me something in regards to my hearing it has been right, so this was scary and I was so nervous , however I knew I couldn’t put this off and I had to do this because otherwise nothing was going to change or get any better and well I would never fully know what was happening if I didn’t.

 

I went for my hearing test and did all the usual things of sitting as close to the office door in the waiting room and positioning myself so I could visually see when I was called through and also so that I could try to hear my name too.

 

I got called through and I am sitting opposite the audiologist called Amelia,  who seems quite nice  and asks me why I am here today and if I have had any hearing issues in the past and I explain all my hearing background with microtia, how I’ve never had hearing in my right ear until I got my BAHA at the age of 18, how my left ear  has always had a mild loss up until I was 16 when I was  told it had suffered a loss and was  diagnosed with bilateral sensorineural hearing loss and was aided for this, how I have been without my BAHA for almost a year now and how I am increasingly concerned about my left ear from the additional pressure it has been put under .

Amelia then asks me  if I have noticed any changes so I explained about having to use subtitles on my TV, about the car radio being turned up to full volume, missing conversations etc …

Amelia checks my left ear to ensure that my ear is all healthy and clean , which it was so this is good to know . I then  went into the hearing booth and had the headphones put on as is standard and told to push the button when I can hear the sounds being played and was told how this will test the quieter sounds so there may be moments of silence..

 

Well there were quite a few moments of silence , I actually think more silence than not if I am honest, I knew then something was up as I felt it was strange to not be hearing a lot of sounds and did not even know the test had began  and especially when there were a lot of silence I felt this was not normal and that there usually is more sound than not. I again knew something was up when Amelia kept looking over at the booth so felt something must be wrong as obviously she can see on the computer when sounds are being played and when I am reacting to it , and clearly she must have been playing the sounds and I was not hearing them .

She did this at least 3-4 times so again my gut instinct kicked in telling me something was wrong .

Amelia finished the test and came to let me out the booth and remove my headphones, I then go and take seat back where I was before sitting directly opposite her to get the results.. The nerves massively kicked in at this point so I just knew my gut instinct had been right this whole time.

 

I sat down and Amelia began telling me how my results were on the screen and began telling me about how we already knew my right ear was down and so obviously neither of us were concerned over this as we had known and expected this and we hadn’t tested this side, after this Amelia did not seem to know what to say to me or how to tell me my results, so again I knew that the results were not great and that there was a problem , in a way she kind of brushed around the subject and didn’t really tell me what was happening just ermming and arrring and talking about my right ear..

 

Eventually after a few minutes she still without telling me what the problem was just quickly said so your right ear is down and we know this and then wuikly rushed out your left ear is on par with this , before saying yes it could do with some form of aiding and asking if I am still under the hospital for my BAHA ..

 

I explained how yes I was still seeing my consultant surgeon Mr Joseph for my BAHA where I am still having post operative checks and how my BAHA is not working and due for upgrade so I will be having to go back about this at some point however I did also explain I did not know when this would be as I had not been seen by audiology for around 6 years now , and explained how I may be having to go to my GP to get a referral back to them.

 

Amelia said how she thought it would be for the best for me to take my results with me to the hospital either when I next see my consultant for BAHA post operative check or to the audiology department when I can eventually get a-hold of them and get things sorted with my BAHA . Amelia told me this was just because she felt if they were already currently dealing with my right ear that she felt it would be best for them to take a look at what was going on with my left and sort out treatment for this but kept reiterating to me that I needed some sort of aiding for my left and that this needed to be done basically without her saying it ASAP .

Amelia explained that she thought it was better for the hospital to take a look and then went on to telling me that if I did not get anywhere with the hospital to go back to them and they would see what they could do for me but she was pretty certain that I should go back to the hospital and go NHS not private, which surprised me as surely they are supposed to try to get people to buy their private hearing aids and to go with them?

Amelia printed the results out for me to take to the hospital and folded them up inside a leaflet and sent me on my way.

 

Honestly I didn’t really know what to think or what to make of the appointment  I obviously knew something was up but I had no idea I just felt like I didn’t get much information about what was actually happening and feel that I should’ve been told.

 

Instead I came home and began annalysing my audiogram and found from looking at a few trusted websites that this is how you work out what level of hearing loss you have :

 

Audiogram

 

so basically pulling this apart  from using the above graph and a trusted website this is what I was able to find out.

 

Normal hearing level should be between -10 – 25

Mild Hearing loss is between 26-40

Moderate hearing loss is between 41-55

Moderately serve hearing loss is between 56-70

Serve hearing loss is between 71-90

Profound hearing loss is anything between 91-120

 

so on an audiogram this is shown by a blue line which represents your left ear and a red line which represents your right ear and everytime you press the buzzer it makes a mark on the chart … .this is what my test results looked like..

 

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Sorry I appreciate this not very clear, this is due to me taking the photo on my phone  .From using the graph above I was able to read my results and interpret what this actually meant in terms of my hearing … at the top of my audiogram  in the top right hand corner it tells you each ears total score/ loss

So my right ear which was not tested today had a score of 75 meaning that would place my right ear in the  serve  which I expected and have known since birth although it always shocks me that it is not in profound as I cannot hear anything that side with my BAHA.

Anyway and then my left ear score was.. 68 meaning this places me into the moderately serve classification only just though , as 2 more decibels and it would be serve … eek. This was and wasn’t what I was expecting to hear (pardon the pun this was not intended)

I knew  that it had deteriorated from what it was around 5/6 years ago with the fact I am forever turning my TV up louder and then being told off for doing so as it’s too loud that my parents can hear it over the TV downstairs and so  I then rely on subtitles , the car radio being on full volume and still not sounding loud enough, not being able to hear the lyrics to songs in choir and relying on the base to indicate what song it is and Carol lip patterning the song too,  struggling to hear in social environments so again choir I feel I cannot hear or take part in conversations  I;m struggling more than ever to hear Carol speaking to the choir, going out and about with my parents and David again i’m struggling and only relying now on lip reading.

 

However honestly I don’t know if I was quite expecting it to have been such a big jump down the scale , but then when I think about it in someways I feel like well I must have subconsciously known this though as I feel if my hearing had only deteriorated slightly I probably would not be noticing anything different like my radio being turned up full volume , I’m only noticing it because I want it and need it louder and it doesn’t go any louder.

 

I will admit I did feel a little upset at first about it but this literally lasted a couple of minutes if that  before I was like OK  well these are the results , it is what it is now lets just get on with it ,  move forward  figure this out and get the ball rolling in getting this all sorted out , as well honestly there is nothing I can do about it apart from taking this information and doing something about it being upset or negative about the whole situation will not change anything it’s just one of those things really and I just have to get on with it ,face up to it accept it and carry on really.

 

I then went online to try to find out more about what this type of loss meant and what this could mean for me really just so I could get a clearer picture and understanding of everything really and I found a few things on websites that are very trusted that rung true to me such as basically describing all of the new things I have noticed such as subtitles , loudness of TV and radio and social situations which made me more certain this was a correct diagnosis. One website that popped up was Cochlear and this is a website I very much trust as this is the company that makes BAHA etc and so I do trust their information and I read through their website again a lot of this rung true too and I was directed to take a short test on their website of answering questions about what I can and can’t hear etc  and here is my results from that:

 

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Again I apologise this photo was taken on my phone so I know it may be difficult to read so basically it says I scored 59 out of 60 and it then says underneath  How does your hearing compare to others?  and then says Your score of 59 is in the upper 1 percentile of adults with hearing loss and then above all of this says what solutions may be appropriate for me and says ACTION needed : Hearing solution is needed Cochlear Nucleus Hybrid Implant , Cochlear Nucleus Implant may be the solution for you.

 

This did shock me as in some ways it just made everything I was seeing on the audiogram , the way Amelia the Audiologist had behaved and acted in not knowing how to tell me the audiogram results, everything I had found online to be all correct and true information . It now in someways made sense why Amelia was so adamant I needed to go back to the hospital and down NHS route , as I just feel surely if it was a case of just needing a hearing aid that she would have maybe felt better in delivering my results to me and would have surely pushed for me to buy a hearing aid from them but the fact she kept reiterating that I should get a referral back to audiology  kind of now made sense , as maybe perhaps I was not going to be suitable for a standard hearing aid.

 

 

 

The first person I told about any of this , honestly was my boyfriend David as I had said to him about being worried about my hearing and how I had booked the test and was nervous about it and after having the test done I needed to talk to someone about it and honestly as much as I love David and had expected him to be one of the first I hadn’t expected him to be THE first.

 

I had thought about this before the test and for a while really who would I tell first and quite honestly I always thought it would have been either

Ann Sargent- as she has been there from the beginning and every step of the way with the whole BAHA journey as well as volunteering for cochlear and having contacts at the hospital and would possibly be able to get things moving quicker. I also felt Ann having a hearing loss herself would be able to be more supportive and understanding towards my situation and felt she may be of a great deal of help to me with the while situation and would be able to offer a lot of advise and help.

Carol Cook – was another I thought would possibly be the first person I spoke to about it all  as Carol has a fantastic understanding of deafness as she is a CODA but mainly more than that because Carol is my sign language tutor as well as choir leader and obviously this is important information for her to know and be aware of and I just felt Carol would have an understanding as she knows about my hearing and BAHA and everything anyway and felt she too would be very supportive and of help to me.

 

Paula Parker- Again Paula was another person I thought may possible be the first person I spoke to about it as Paula taught me level 1 sign language last year and is absolutely fanstastic in what she does, not only this but Paula also works supporting deaf students and so again I thought Paula may be one of the first I turned to for this reason as I felt with Paula working to support deaf students that she may also be able to be of help in supporting me with this and offering help and advise too .

 

But yes it was actually David I told first and then I told Ann , I had not planned on telling anyone after I told David until after I had seen my GP and asked for a referral and until I had an appointment with audiology at the hospital before letting others know what was going on just in case for whatever reason Specsavers test was wrong or if the hospital did more in depth tests and it wasn’t as worrying or whatever.

However I ended up telling Ann as she had text me to say she was trying to get an email across to the repairs team at The Royal National Throat Nose Ear (RNTNE) for me to get my BAHA upgraded and sorted and I just ended up telling her how if she didn’t get anywhere with it to let me know as I may need to get a referral to audiology anyway and then told her everything .

Ann agreed that I did need to get up to the RNTNE ASAP on being told everything and seeing my audiogram .I explained to Ann that this was my intentions and explained about how long it has been since I last saw audiology and asked how I go about getting this sorted , in case she knew of a quicker way to get things moving , rather than me having to try forever to get hold of the doctors, then actually get an appointment, then wait for them to send the referral off, wait for the referral to be accepted and wait for an appointment to come through. All of which could and most likely would take months.

 

Ann was shocked and agreed with me how I had definitely slipped through the black hole as she put it and told me how I needed to get an urgent referral to see an audiologist at the hospital ,Ann told me that she will be up at the hospital on Monday 16th March and that she would try to speak to someone about it .

 

This kind of made all of yesterday’s appointment and the results feel real all over again and brought everything from the appointment back to me but honestly I was still OK and just felt relieved in some way that I had told Ann and that I had started getting the ball rolling to getting it all sorted out whatever the outcome may be whether this is a stronger hearing aid – although the only time it felt OK was before I had my BAHA and just made everything loud not clear or anything like I felt I got from the BAHA , whether it means a cochlear implant , another BAHA, or even possibly doing nothing at all as maybe my BAHA for my right will be able to be adjusted to support my left more at this moment in time I have no idea what is going on or what the outcome will be or could be but I know I am on the right path and doing all I can to find a solution ASAP.