12. The Dispiriting Switching On Ceremony ~ 20th May

I have spent the last "8 working days" filling up with a mixture of desperation and excitement as I wait (impatiently) for my first pair of hearing aids. I never thought I would use the words 'hearing aids' and 'excitement' in the same sentence, but needs must. I've been reminded not to get too excited as they are not a fix and they will only amplify what I can currently hear, yet I can't help it as the thought of hearing any additional sounds would be amazing. I'm waiting for the phone call to say that the appointment has been canceled or they are still waiting for the delivery.

My mum kindly took me for moral support. The audiologist produced a lovely shiny box (mind you I would have considered a dirty, rusty box or even a supermarket bag as being lovely at that point!) and I waited in anticipation for him to open it. This was the moment, the moment when he would find the box empty, discover it was the wrong order or worse still find they were beige! There they were, two purple hearing aids, much smaller than they looked in the picture and extremely light.

The audiologist put them in and around my ear to make sure the fitting was good. 

I couldn't get over how comfy they were. He started to tweak things on them via his computer. The clarity was awful, I could barely hear what he and Mum were saying. All I could hear was the noise of a train. You know the sound of when you are waiting on a platform and a train goes past you really, really fast? Well that's what I could hear and at that volume too. The audiologist and my mother wondered whether it was due to the noise of the air conditioning system or his printer. We agreed that I would go away and see how I got on.


My ears felt exhausted. *The only way I can describe that feeling, is if you imagine you are squinting because of staring at the sun, now imagine doing that all day. This would make your eyes sore, so you would stop gazing at the sun. **In the same way (without the sun!) my ears are straining to hear noises, but I can't put my sunnies on my ears!

My first step out of the door was one step too many, it was a cacophony of noise.

I went into a supermarket and I couldn't hear anyone's voices just a continuous unrecognisable, monotonous loud sound. I couldn't get out of the shop soon enough. I had been determined to wear them for the rest of the day for me to start getting used to them, however by the time I reached the car I couldn't stand them any longer and quickly pulled them out. When I got home, everyone wanted to see them so I put them in again and switched them on. The screeching noise (not the same as the whistling noise some hearing aids make) was so loud that everyone in the room immediately covered their ears in pain. It was so unbearable that I had no option but to take them off, unable to tolerate them any longer. I felt so disheartened, depressed (in the true meaning of the word), frustrated, cross with myself for allowing myself to have got so excited, cross with myself for expecting too much, let down by the audiologist for recommending them and saying how good they are and I was even cross with the manufactures for creating them.

*Safety notice: please note I am not endorsing the act of staring at the sun as that would be a ludicrous thing to do! **As for covering your ears with sunnies...!

11. The Sound Of Music ~ 17th May

The suns been out today and there wasn't a cloud in sight, hopefully that's a sign that summers on its way! I had a happy and sad moment today. We've got a blackbird in our garden and we've been watching her build her nest. My Mum was in the garden today and heard little tweets (not the social network kind!) coming from the nest. From a distance we had a a quick peep at the tiny babies. Whilst I dashed inside to grab a camera I suddenly realised that I couldn't hear them like my mum had. When I went outside again I tried listening to all the sounds around me and it then hit me that I can no longer hear any birds. I've always enjoyed listening to the dawn chorus. It's made me really sad, but I just hope I am able to memorise the sound for the rest of my life if that is possible.

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I picked up my sister from the station late last night and I had my music on a lowish volume whilst I waited. I got funny looks when the passengers off her train walked past my car, a look of disgust but I had no idea why. When she got to my car she was desperately indicating for me to turn my music down which I did before she was happy enough to open the door. I was mortified when she said she could hear my music from the other side of the platform. There I was thinking it was fairly quiet. I have decided not to play music again. The only problem is my sister is a professional singer and I want to be able to hear her beautiful voice.

I haven't been able to hear the television recently so I have now resorted to subtitles which I hate. Why put the subtitles in the middle of the picture so we cannot watch it? I can understand with live television, but with pre recorded programmes why can't the subtitle be kept up to date? It's almost a case of seeing 'Joe Bloggs' being born and by the time the subtitles mention his birth he has already died! As for the spelling, don't get me started!

I am extremely embarrassed to admit this, but it must be said..... it has only dawned on me today why I cannot hear anything whilst on the phone. Perhaps putting the phone to my right ear (the completely deaf one) isn't the most intelligent thing to do!

10. Two ticks on my bucket list ~ 15th May

I have been contacted by The Surrey Advertiser newspaper asking if they can interview me about the hearing event I went to and also know a bit about my situation. They also mentioned they want to take my photograph....oh dear! 

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I've ticked two things off my hearing bucket list today. I was taken to London to see 'Mamma Mia' at the theatre by my parents. I couldn't hear most of the talking but through some of the sounds and the vibrations of the music I was able to work out which song was being played. The other thing I've ticked off my bucket list today was clapping. I wanted to hear the noise of the audience going mad, as though they weren't physically able to clap their hands any harder and faster. In the encore my eyes started welling up, knowing that this was probably the last time I would  experience those two things again.

The production was amazing! I saw it when I was about thirteen, as an end of year class trip. That morning at school my tennis friend and I had a phone call from our coach offering us two free tickets to watch Wimbledon on centre court! Desperate to go, our school said no! It turned out however that Mamma Mia was superb and the audience were singing and dancing at the end. A very memorable day, hence why I wanted to see and hear it again. 

9. I'm Not That Old! - 9th May

I went to an event today which was amazing. It was an information and support day for people with hearing loss. There were lots of stalls, either charities showing what they do and how they can help me, another stall informing what help and support I maybe entitled to free of charge, a course my family can go on to learn ways to help me (eg ways to approach me without making me jump) and so much more. As this is so new to me it was really beneficial and the kindness of everyone was overwhelming. One lady game me her personal e.mail address because she wants me to keep her up-to-date with how I am getting on! I got to meet other deaf people. Unfortunately no one my age, but it didn't matter as there were a couple of other people who had lost their hearing at the same age as me and they too experienced/experience the same feelings or problems I have. I came away with a goody bag full of information and lots of biro's handed out from all the different stalls!

Did you know that you can get an alarm clock which has a little device you put under your pillow which vibrates when your alarm goes off? There was me thinking that as I can no longer hear my alarm clock, I could take advantage of lots of lie-ins in the mornings. I wanted to curse the manufacturer for making such a thing. There are alarms which go on doors to alert the deaf person  when someone enters the room (and therefore not giving them a fright) by a watch that vibrates. Flashing doorbells, alerting land line phones, TV amplifiers and amplified mobile phones. There are other things available but not nearly enough. The one thing which is really irritating me is the assumption that because you are deaf, you automatically have poor eyesight and you are also elderly. The mobile phone I've been looking at (which appears to be the best hard of hearing phone on the market) has ginormous buttons and on most of the websites I've seen it states that "due to its simplicity, this phone is perfect for elderly people". I'm not elderly (well, despite feeling it at times!), I have my sight and I want a phone that can do everything my current iPhone can do but which will allow me to hear the person on the other end of the line.

8. Beige Hearing Aids? No Way! - 8th May 2014

I've seen two audiologists today which means I've had two lots of hearing tests (they leave me exhausted). Both audiologists confirmed that I am now completely deaf in one ear (with one of them referring to it as being dead!) whilst I am profoundly deaf in the other. Will it get better? Unfortunately not they confirmed. It's obvious that I'll be 100% deaf sometime soon. It's not just down to the inherited condition they think I have, but the antibiotics I've been taking for the last four months which have had an ortotoxic effect, in other words even coming off the antibiotics won't make it reversible now as the damage has been done. I don't know what my doctor would think about me stopping the antibiotics immediately, but I'm afraid I don't care one iota if it means I could keep my little hearing a bit longer. No tablet tonight!

Now then girls, why do so many of us wear pretty or fun or colourful underwear? Does it make us feel better, more confident or more feminine in comparison to wearing Bridget Jones knickers, even when they are hidden away under clothing? It's taken me a while to get used to the idea of me wearing hearing aids. This is when my knicker idea came into action! Why should I hide my hearing aids due to embarrassment when I could be confident and wear them with pride? I was immediately shown a pair of beige hearing aids....absolutely not! I wanted more colour to show my personality. Purple it is (unfortunately they don't come in my favourite colour pink!)! It is highly unlikely they will be visible under my hair, but why should I wear Bridget Jones knickers? So my new hearing aids have been ordered and I should have them within ten working days! I never thought I'd hear myself say that I can't wait for a pair of hearing aids.   :)

So the cosmetics of the hearing aids is obviously of paramount importance to me, but I guess the insides are important too! Mine are like mini computers due to what they do. They have a feature where both hearing aids communicate with each other! It is so technical that I cannot begin to explain it to you (in other words I don't fully understand!). I have just sent a message to the company asking them to explain it in child language so I can understand! Unfortunately they are very big, but it's evidently because my hearing is so bad. The audiologist said they would significantly improve my quality of life for a while. They do so many things that I'll have to explain these new super powers I have, but that's for another day!

7. The Compassion of Mrs Consultant - 7th May

I'm in the waiting room waiting to see another consultant and I'm terrified. I barely slept last night and I had a nightmare about it the night before. What if she doesn't listen to me? What happens if she doesn't take it seriously? What if she asks me to go back another time for more tests and doesn't do anything today? What do I have to do to show how desperate I am...get on my knees and beg? Burst into tears? Barricade the door so she can't get out until she's done something for me? Maybe I should do all of them.

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I've just been in to see the audiologist and have the hearing tests done yet again. I am now sitting back in the waiting room as I type this, so, so scared. I don't know whether I want this other consultant to hurry up and call my name or not hear her call me at all. I'm shattered already as the hearing tests make me so tired.

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I've just come out of consultants room. One of those people who you know are being charming solely because you are a private patient and probably wouldn't be anything like it when you see her on the NHS. Anyway I had reason to be in a tis-was. For a start she asked me why it was I had come to see her! She obviously hadn't done her homework and looked at my notes! I might be wrong, but it was as though she wasn't bothered by me, just my hearing results and even then it felt like she wasn't listening to me. She said she wants me to have further tests and in the meantime she wants to get some more information from the previous hospital. She showed me her true personality when I asked how long would it be until I have the tests. In a short and unpleasant tone of voice she said "well it's going to take me a day to get all your notes". I don't know whether she was expecting me to be grateful for that and say thank you, but I didn't. I was hoping that she would say that in that case I could have the test in the next two or three days, but no "it will be at least two or three weeks" For once I actually wished that my eyes would well up to make her actually look at me and show how desperate I am to have something done. She handed me her business card on my way out whilst shaking my hand. I already have her secretary's telephone number and the address of the hospital...is she wanting me to give it to a friend or something?! It's now in the depths of my handbag and when things reach the bottom of my bag they are never to be found!

6. The Perks of Having a Deaf Spouse

A couple were staying the night at a hotel. In the middle of the night the deaf husband asked his wife to go to the car to get his heart pills. She hurried to their car, found the pills and was about to rush back to the hotel when she realised that she couldn't remember their room number. She put her hand on the horn until all the bedroom lights came on except one...."that must be our room" she said.

5. There is Always Someone Worse Off Than You

I've been feeling really sorry for myself today and do you know what? I don't care. Who said we shouldn't feel sorry for ourselves? Someone must have instilled that in me as a child although goodness knows who. I'm not suggesting that you wallow in self pity your whole life, but surely it's better to acknowledge your feelings rather than fight to put on a fake smile for the world whilst conning yourself. A psychotherapist I know described losing my hearing as a grieving process and it is important for me to treat it as any other loss. Also what's this saying about "there's always someone worse off than you"? Of course I know that there are people far, far worse off than me in the world and it's desperately sad but that's not helping me this very moment and it also doesn't help them right now.

I managed to put on a fake smile and I went out for lunch with a dear 87 year old man who isn't my uncle but I call him 'Uncle'! I can't have heard more than twenty words he said to me during the meal. I closely observed his eyes, the way his mouth moved, the fine lines on his face and his expressions, examining which expression to respond to, whether to laugh, look sad or look normal. I noticed that every time he looked down or played with the stem of his wine glass that he had finished talking about that particular topic. That was my opportunity to jump in and start my own conversation so it looked as though I was participating throughout the meal. I found the situation very upsetting. He really kindly invited me to go to Austria next year however I am fearful that I won't be able to hear him, that's if I can hear anything at all.

4. Lesson one: Lipreading and Sex - 28th April

This is the day I have been excited about since my last appointment. I have got my first lip reading class! It's also going to be the first time that I will mix with a group of deaf people. I'm excited, nervous and a little unsure. I have thought of not turning up but I know that I won't gain anything by doing so. I'm hoping that finding the place is going to be the biggest challenge!

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As it turned out, finding somewhere to park and locating the building were the hardest challenges, in fact I almost gave up and went home. Despite leaving an extra half hour to find my way, I was late and I don't do late! I walked into a large room where the lovely gentleman chairing the group said "welcome, you must be Louby". All but one chair was taken so I had to weave my way through. There's nothing like making a big entrance! 

There were 25 of us, of whom the majority were in their 70's and 80's, one lady in her 90's and then there was me at 29!

The session was divided in two, the first half was lipreading and the other half was a 'talk', not forgetting my £1's worth of tea and biscuits in the middle. The ladies were very keen on feeding me more and more and more fig rolls and custard cream biscuits...it would have been rude to have refused wouldn't it?!

I had done some research before hand and there were lots of articles stating how difficult it is to master lipreading. For goodness sake, how hard can it be? The lipreading tutor only spoke when she was explaining something or correcting us, the rest of the time she just mouthed the words. There's no start date to the course so some people were already experts and because of this the tutor was using long sentences rather than individual basic words. In silence she mouthed "I'm sorry I haven't been around for the past few weeks but I went away, came back, then I went away again and I don't even have a tan to show for it". My interpretation of that was "I ate a few tweets e.bay I sent you mail went mail again I e.bay go pour"....was I close?! "Did you tea hover at the shop today, the socks were half" was meant to be "did you see the offer at the shop today? The aubergine and sprouts were half price"....slight progression?!

She talked about different supermarkets, vegetables, fruits and a dog having puppies. When it came to parts of the body I couldn't stop giggling (it was meant to be a silent chuckle although with everyone being deaf I needn't have worried) because a man in his early eighties thought that everything she mouthed was to do with sex! "I am good at sex!" he said. We moved on to talk about brushing your teeth and washing using a flannel in the shower to which the man interrupted and said to the tutor "did you say you want to have sex with me?" We were almost crying with laughter. What I later discovered was this man was a fluent lipreader and knew jolly well what he was saying!

We were trying to work out similar words such as 'fine' and 'vine' and we also discussed some virtually impossible letters and words to read eg a phonetic 'g' sound comes from the throat rather than the lips. You try it, stand in front of a mirror, say the phonetic letter 'g', now mouth the letter without saying it. If that were someone else, would you be able to differentiate what they were saying? I suppose the word 'gargle' is a sort of example.

Will I go again? Deaf-initely!

3. Altering My Bucket List - 13th April 2014

I made a bucket list a little while ago. For those of you who do not know what a bucket list is, it's a list (mine is long!) of all the things you want to do, see, hear etc before you kick the bucket. I had great fun writing mine and I printed little pictures to match the subject. There are too many things on mine to list on here. However a few of them are: fly to Hawaii, be a living donor, write a blog and keep it up to date (I'll let you be the judge of that!), train to become a psychotherapist, take a photo every day for a year,  write a book, become a Samaritan, go to the theatre more to see lots of musicals, go on a silent retreat, watch Michael McIntyre live, take up tennis again, visit an Amish community...... the list goes on.

It's suddenly dawned on me that I don't need to go on a silent retreat anymore as everyday will be silent! (I was told a joke earlier about two deaf men in a pub signing to each other. Man 1 tells the other about him getting home really drunk last night and his wife going mad at him. Man 2 said "what did you do?" Man 1 replies "I stopped listening to her". Man 2 says "how did you manage that?" Man 1 replies "I turned off all the lights"!) There are some things on my bucket list which I won't be able to do soon; I won't be able to hear Michael McIntyre live, I won't be able to hear the musicals, I won't be able to talk to the Amish. So what am I going to do about it?

I've completed the form, clicked the "book now" button and hey presto! Mama Mia here I come in a couple of weeks! I went to see it as a class outing when I was about thirteen and I loved it so much.  Back to my bucket list, is Michael McIntyre by any chance a friend of yours who could give me a ticket?..............



Update - 1st October 2015 - I made it!! I've just been to see Michael McIntyre live at The O2 Arena! I couldn't work out what he was saying most of the time, but I still loved it! Another tick off the bucket list!

2. What if......? 11th April

I got up half an hour ago having only had an hours sleep. I feel so different compared to yesterday. I feel anxious, my heart is pounding and I feel really agitated. I think I'm scared. My mind is racing, full of questions and thoughts.

Won't I feel lonely?
Will my friends give up on me?
Will my friends still want to meet up for coffee/lunch etc or talk to me on the phone?
Will I still be able to tell if I can speak?
What will I do if I can't use the telephone?
Will I still be able to hear myself think?
Will people talk down on me as though I'm as thick as two short planks and treat me like a child?
What will I do if I can't hear a wasp (I'm anaphylactic to them)?
Will anyone love me? I will never hear his voice.
If I have a baby I won't hear the midwife announce whether it's a girl or a boy or hear it's first cry and I also won't hear the first time it says "I love you". 
How can I join in with other peoples conversations and how will I know when I can interrupt them? 
How will I be able to do my line of work? 
Will I ever be able to play the flute again?
Will my speech change?
Will my balance be effected? 
What if I never hear my parents say "I love you" to me or my Mum call me "Bunny" again?
How will I be able to hear announcements ie at the airport or on the train etc?
Will I still be able to drive?
I won't hear my consultants telling me "I'm not giving up on you" when I'm ill. 

I could carry on with this list. Some of these 'what if' questions may sound stupid and obvious to you but I need proof. Only a deaf person who could once hear can give me the proof I need to answer some of my questions. Just a slight problem....I don't know any deaf people and I am not prepared to join the deaf culture.

1. Are you a three chance person? - 10th April 2014

The first time I usually say "pardon?" Then I say "sorry, I missed that" and then I tend to make some excuse for example "I'm really sorry, but it is so noisy in here that I can barely hear you, do you mind repeating that"? That's it. Three chances and I give up. Asking them to repeat what they were saying for a third time is awkward but anything more is both embarrassing and humiliating I find.

I saw an audiologist for the first time on 3rd March this year. The hearing loss scale ranges from normal to mild to moderate to severe to profound. I had all sorts of tests done and at the end of the appointment I was told that I had mild to moderate hearing loss in both ears, I will need hearing aids by the end of the year and I have a degenerative disorder so I will go completely deaf at some point.

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It is almost five weeks since I went to my appointment. Today I have been back to the audiology department for appointment number two. I knew that my hearing had deteriorated a lot in that short space of time but....... From mild to moderate hearing loss five weeks ago, the consultant told me that it is now in between severe and profound in both ears and I will lose all my hearing from anytime now to the next two or three years. He said that I will need hearing aids now and there is some equipment available which allow me to have a better quality of life. I switched off as that was enough information for one day.

On the way home, positivity immediately kicked in. I'm so thankful it is my hearing as the thought of losing my sight is far worse, I've got all four limbs, a very loving and supportive family, some special friends and most of all I have had twenty nine years of being able to hear. What else can I ask for?