The Deaf One

Seasons Greetings! Grab a biscuit or two…

Hoping you all, if you celebrate it, had a lovely Merry Christmas! Snowy here sends his best:

I had a lovely time, although I had a sore head for reasons very different to many other people!

The short version is that I arrived at hospital on Monday, had the Operation Tuesday, all went well so came home on the Wednesday. If you’re willing to read the full story, put the kettle on, make a cup of whatever you fancy, and read on…

21st December 2009

Arrived at the hospital just after 5pm and was shown to my bed after a short wait. I was in a lovely little side room, with just one other lady for company. A view of stunning Selly Oak out of the window, and a little private cubicle to myself. Pretty fortunate don’t you think? I spent the first evening getting to grips with the patient tv/computer thing, which fortunately had free internet, but unfortunately was very limited to what you could browse. There is only so many times you can check the BBC news website so thank goodness for Googlemail chat!

The doctor came to admit me onto the ward, I was found to have a wheeze in my chest, but as this is something I have always had, it wasn’t deemed anything to worry about. I put it down to the fact we had walked up 10 flights of stairs instead of taking the lift to be honest… not something I recommend just before you have your blood pressure taken! Blood pressure was fine luckily, but heart rate a little high, they talked of an ECG but I informed them I was pretty nervous (truth) and thankfully the consultant decided this was all it was. I was so relieved, I briefly panicked at the thought that they wouldn’t do the operation!

I felt like a fraud in hospital this evening, the poor girl on the other side of the curtain was having an awful time, I think she had a bad reaction to the anaesthetic. This didn’t help my nerves, and as I’ve never had an operation before and wasn’t in for anything medically wrong as such, “just” a procedure, I felt quite odd to be taking up a hospital bed. I made myself at home though, Andy popped to the shop while I had tea (Lamb Hotpot and a jam scone, very nice) and came back with some Jaffa Cakes and Practical Photography Magazine, which cheered me up no end. He had to leave about 8.30pm so we said our “ta ra” knowing that next time I’d see him, I’d be bionic!

I slept fairly well, lots of activity on the other side of the curtain. I really felt for the poor girl. I missed my two little girls terribly, but was very glad to hear they’d settled well for the grandparents. Big day tomorrow.

22nd December 2009

Woke up at 6.30am to this fine looking notice:

 

Attractive huh? Especially when your room mate gets served a very delicious smelling breakfast of toast and jam… I distracted myself by having a quick shower, tidy and psyche up. Well, if you call walking back and forth by the window thinking “It’ll be fine, it’ll be fine” psyching up that is.

Soon enough, I was brought the most attractive looking gown to change into, and some fabulous pressure socks. They were very sexy. Seriously, they need to get someone to redesign those, there could be quite a market in them, and who ever thought that a gown that is done up at the back by four measly pieces of string is a good idea? I was walking around with a funny twist in my back, checking no one could see anything!

By 9am I was in the anaesthetic room having a cannula put into my hand, and some sticky pads on my arms and a leg. The glasses and hearing aid had to come off, an injection was put in, the lovely anaesthetist said it was time to go to sleep. It felt like ages before I dropped off, I furiously kept my eyes open darting them back and forth between the people in the room to make sure they knew I was still awake pleading with them in my head to not operate just yet! I spotted the clock ticking, my eyes were fuzzy, (I wear glasses for a reason) but I could just about make out it was 9.05am over the other side of the mask they were hovering over my nose and mouth. Will I ever fall asleep? I was wondering…

And then I was somewhere else!

Boy that was quick. Ooh, I’m woozy, my head feels odd. What’s that on my face? My lips feel thick. Something on my arm vibrates up and down, ah, it’s a blood pressure monitor,  I’m in a different room, I have a bandage on my head and I’m coming around! Whoop! I’m alive!

Seriously, I had no doubt that I’d not be ok, but I suppose it crosses everyone’s mind just before an operation. The knowledge that they’re going to put you under general anaesthetic (must learn how to spell that word, spell check is getting annoyed) and your life is in someone else’s hands. I was thrilled it was over, the anticipation is often more troublesome than the actual operation I feel.

My first words to the kind gentleman in charge of my obs were “What’s the time?”, to which he replied “20 past 12”, I then realised that they had put my glasses on and my hearing aid back in for me. After the most divine sips of water I have ever tasted in my life, I was wheeled back to the (now empty) room. Shortly afterwards, dinner was served, which despite being hospital food looked incredibly moreish, but I couldn’t chew without it being rather uncomfortable, the rice kept sticking in my very dry throat and the IV line into my hand was a bit on the distracting side when using a fork, semi propper up by a pillow! The rice pudding was nice though, that went down quite easily. I started to feel a bit more chipper, and less dizzy slowly and before I knew it, it was 2pm and my husband and mum were here to see me.

That was when I first started to appreciate the hugeness of the bandage on my head. It was comical. I felt like Pudsey Bear! The tinnitus was something you’d need to have to believe though, the loudest, most overcoming tinnitus I have ever had. It’s completely normal I understand, but very hard to deal with. I was so grateful for some company and a distraction.

Do you want a picture of me post operation? Are you sure?

Go on then, you can have a squint at this:

I felt like a bit of a banana with that bandage on, it gave me a constant frown and I have a very good excuse for some new glasses now. I started to feel a lot more human once Andy helped me get changed into some joggy bottoms and I had been to the loo. I also sent him to the shop for some jelly tots, and later on had my Mum fetch me some lucozade. I realised why I fancied these later on that evening, I had very little taste, so fizzy stuff on the tongue was just what I fancied!

The pain relief was fantastic, honestly – apart from the tinnitus and the dizzyness, oh and the fancy hair band made of bandage material, you couldn’t tell I had just had surgery. Oh, and apart from the huge blister forming on my bottom lip, I think they had been a bit eager (read that to mean rough) posting the tube through my mouth during the operation!

Just before I was due another dose of the painkillers, I started to feel the effects that the op was having on my ear. It was a bit like I had just descended from a flight in a plane. Sometimes when I fly, I get a horrendous pain in my ears, it really is eye watering, like a big hot needle has been jabbed in my ear canal, has caught something inside and is trying to get back out again. Once I’m back on the ground, my ear feels blocked and very bruised – I don’t like to fly often as a result! But the bruised feeling I get once I’m grounded, was very similar to how my ear felt after the operation. The bandage was heavy and hot as well, but I knew that was only temporary. The wound itself, was sore, but nothing too bad. Nothing a mug of Horlicks didn’t sort out!

It wasn’t long after the afternoon visiting finished, that a nurse popped in to tell me that they had an emergency coming in and they needed my bed. I had been transferred into the main ward. Noooooooo! It wasn’t that bad though really, my bed in the main ward was right next to the nurses station, so there was now someone nearby all the time. I don’t like pressing the nurse call button, preferring to wait until someone is ‘passing’ to ask a question, so this suited me better actually. The comedy bandage fortunately matched some other bandages on the ward (although I was the only one with my kind), so I didn’t feel quite so much like a banana in there as I feared.

Tea consisted of chicken sandwiches, which was when I realised that bread now tastes of cardboard. Hopefully it won’t last long. The strawberry mouse was delicious though, to smell and swallow :-D Evening visiting was very much welcomed, seeing my Mum and Andy was a real treat, although hearing about their mixed grill and crumble for pudding, wasn’t. Hehe. I was missing my family, especially my girls, a huge deal. Visiting times in hospital really are a godsend.

As I watched the lady in the bed opposite me, tuck her tissue under her pillow before she settled down to sleep that evening, I realised just how much rely on routine and home comforts to get us through difficult times. Being in hospital, wasn’t an unpleasant time for me, I wasn’t in for a life threatening condition after all, just a procedure to aid a disability I have. But it is still very daunting, and I found myself realising that I too, have a little routine that I play out before I go to sleep. I took a quick look at a photo of the girls that I had in my purse, to replace the “look in” their bedroom that I do each night, and then took my glasses off and placed them somewhere I knew I’d find in an instant if I needed to. My hearing aid came out next, and was sat next to the glasses (on their right), and I tucked my arm under the pillow, tentatively put my head down on top and imagined a big yellow smiley face to scare away the bad dreams.

I was woken at 12.30am as I needed another antibiotic drip put into the cannula. It stung like mad, I couldn’t sleep much until it was finished. I was due another 12 hours later, fantastic (!). The discomfort of my head, and the ever growing blister on my lip could be trebled, if I didn’t have to have to go on another drip!

23rd December 2009

All was forgiven when I woke at 6.30am to a cup of tea. I forgave some more when I was given some cornflakes. And everything was definitely right with the world when the nurse drew the curtains to take my bandage off!

I then had to go to x ray, to check that the coil was in the correct place. I haven’t had many x rays, are x rays normally this strange? I had to sit on a chair, by this huge machine that looked like a big paper guillotine. The nurse told me to press my head against this metal plate and as she moved me into position, my nose and mouth squashed against the plate akin to a child pushing their face against a cold window pane to make a funny face. It took longer to get my head into position, than it did for the picture to take!

Back on the ward, and I was told that the coil was indeed fine and in the correct place, I was free to go home! Yay!

I started to pack my bag. Only to be told I needed another antibiotic drip and something to eat first.

                                                                     

Ouchie.

 

 

An hour and a half later, I’m being discharged and I’m good to go!

 

 

 

 

The best thing about being away from your children, is seeing them again. I was so delighted to be back home that evening. I was so glad to be home. Christmas? Knock me out!

24th December 2009

Oh boy, where did the dizzyness come from? I started off very dizzy immediately post op, but generally managed my balance just about ok. Today however, woah! It’s like someone has stuck a wooden spoon in my brain and stirred it up a little bit!

Had a photo taken of behind my ear, so glad the consultant didn’t shave too much hair off, it’s easily covered by a bit of clever brushing. I was told afterwards that he commented on how thick my hair was though, so perhaps for once, it was a good thing!

26th December 2009

I’m now on day four and I’m still very dizzy. Christmas was a good one, and I have smashing family so I was looked after and not so much wined, but definitely dined for the duration of the day!

Today, we’ve taken another comparison shot, the mesh bandage has come off now, so you can get a real sense of where they cut, and wahey, some hair is already growing back!

Will write more as the days go by.

Well done if you’ve read the whole thing, treat yourself to another cup of tea!

x

The Big Day looms!

At 4pm this afternoon, I will be off to the hospital ready to check into my bed ready for my CI operation tomorrow morning. I am currently housing feelings which are a mixture of excitement, nervous as hell and some serious butterflies are making themselves known in my tummy. I will be wearing my hair down today, I will also be packing my gorgeous new weekend bag (Thank you to my wonderful Mums) and wrapping the last of the Christmas Presents.

I know it’s going to be fantastic, but I can’t shake the nerves!

Will post when I’m back home, til then, Ta Ra :-D

Cancel the Op! I’ve found a better option!

(Only Joking, of course)

Credit goes to my husband for finding this, but I had a fit of giggles when he e mailed me with the above sentence followed by this link which contains images including this one:

According to the website, this is an “Acoustic listening device[s] developed for the Dutch army as part of air defense systems research between World Wars 1 and 2”.

But I had to chuckle (a lot) at my husband’s humour. Hope you did too!

 

P.s Just a side track briefly, talking of my husband I thought I’d point you to an article on his blog that he wrote, which I was very touched by. Isn’t he lovely?

See here!

I came home with a box!

Can you guess what kind of box?

This one to be precise:

You know what that means don’t you? It’s confirmed. It’s definitely happening. I am having a Cochlear Implant!

Surgery date is on 22nd December 2009. Just before Christmas so although I might have a sore head for different reasons this year, at least there will be plenty of people off work to give me a hand with the children and general day to day stuff.

The appointment went really nice. The consultant and his team are fantastic, I cannot fault them at all. I’m absolutely thrilled that it’s going to happen, definitely. But I’m also very nervous, apprehensive and scared too. It’s still a big operation, I’ve never had one before. It’ll mean being away from my children for 2 whole nights, staying in a strange hospital 25 miles from home. It’ll also be the start of a new journey. I’m amazed that it’s taken only 6 months since that first appointment to visit my GP to request for the referral and now we’re here.

I saw my scans on the computer. The consultant said that it was very clear, the sort of scan pictures that he’ll distribute to show students – perhaps, in the words of my marvellous Mum who accompanied me on the day, I shall need to sign a model release form? :-D

My Vestibular Aqueduct is widened – we knew that. It’s still nice to be told though, with a confidence as to why I am deaf. It’s all fine in there, I had my pre-operation assessments, an injection and some swabs taken. Leaflets to pour over once I got home, and a box!

Naturally, we had a “box opening ceremony” (term courtesy of my lovely husband Andy) so would you like to see more?

 

An impressive piece of kit huh?

I had loads of questions for the consultant. I had been rehearsing them in my head for days. But when it came to it, he was so clear in his explanation of everything that the questions just went. I felt very informed. He’s going to need to shave off a little bit of hair behind my ear (gulp) and there will be an incision made behind my Left ear. That was the other thing – he is happy to do my bad ear! This is fabulous news to me, I feel safe knowing that I have nothing to lose. I feel safe knowing that after the operation, in the meantime until the switch on, I can still use my hearing aid in the Right ear as normal.

So, that’s it for now! No doubt I’ll be posting soon, blogging about what’s to come!

Music to my ears

Yesterday, I promised a very good friend of mine; Ruth Montgomery that I would mention my music on this blog.

Its actually quite apt to anyway, as I have been thinking a lot about music recently and what will change when I start hearing with the CI instead of hearing aids. It won’t be music as I know it anyway.

I was BIG into my music when I was younger. I remember very clearly asking to learn how to play the Clarinet when at primary school and the music teacher unfortunately ignored me. The second the music teacher at secondary school asked my class if anyone wanted to learn, my hand shot up and off I went.

I loved my Clarinet. I still do. It’s a beautiful elegant instrument. I played it for 8 years regularly and very fondly. I took my grade exams, I did GCSE and A Level Music and even went as far as doing first year Music at University. I played the piano as well, although nowhere near to the level I played my first instrument.

Ruth has gone on to be an incredibly successful Flute player. I’m very proud of her. She’s absolutely extraordinary and has played all over the world. She teaches Flute and also music to young children as well. Her determination has always impressed and excited me, she’s an inspiration to all budding musicians, not just those who happen to be Deaf.

My story isn’t quite so impressive, but I do have one all the same. The biggest achievement of mine, was when myself and Ruth were selected to travel to Russia in 1997 when we were just 15 and 16, to perform in a concert at the Great Moscow Hall to promote disability within music. It was a huge event, and a massive life changing experience for me. We played Handel’s “Air” from the Water music, on stage with the Moscow Youth Orchestra in front of an audience of thousands, including President Yeltsin. Ruth has since been back to Russia where she played on the same stage as we did all those years ago.

I gave up playing on a regular basis when I lost the use of my Left ear for good in 2001. As well as being the demise of my Clarinet career, it was also the start of using only one hearing aid which eventually led to me making the initial investigations into a CI for that ear at the start of this year. I struggled a lot to continue the Clarinet. I wasn’t getting the support that I needed at University, there simply was not enough belief in me that I could do it.

There is a lot of confusion about how Music and Deaf people can mix.  Music is not just about listening after all, there’s the theory, the beauty of manuscript, the logic, the creativity, the vibration and the relaxation element too. There is a magic about music that does not just have to be listened to. The support I had at Secondary School was out of this world, without the music department of Mary Hare Grammar School, I would never have had the experiences of learning and performing that I did. By the time I left school in 2000 I had performed on stages in Russia, the Netherlands, at the Anvil in Basingstoke, the Royal Albert Hall in London and for many important people such as Princess Anne and the Minister of Education at the time, David Blunkett. Music was my life.

I say that it was the loss of further hearing that contributed to giving the Clarinet up and I do maintain that. But if I’m brutally honest you don’t need to have a lot of hearing to be able to appreciate and enjoy music. Ruth still plays amazingly well after all. The hearing aids do a great job, but the vibration of sounds and beat is something else. When you understand the language of music, there’s a lot more to it than just listening.

I think a lot of it it was also the lack of support I received at university. And perhaps also, my knack for it was never going to be quite excellent enough. I was good, very good. But never exceedingly excellent and sometimes I felt that my success as a Deaf Clarinettist was only really because I was Deaf and it was considered an achievement in itself to be a Deaf musician. I don’t mean to play down the skill I had, I wouldn’t have played on those stages if I hadn’t had been good, but when I watch someone like Ruth play, it is out of this world. That is raw talent.

I do still play on occasion, but it’s not the same. I miss it a huge deal. I am really nervous about what the Clarinet will sound when I have the CI in place and switched on. Will it still sound as pretty as I remember? Will I regain my excitement and enjoyment of the instrument again? Will the sound of the low G note send thrills down my spine once more? I dearly hope so.

 

 

Here’s Ruth, profoundly deaf and playing flute with her father Roger on Guitar. Isn’t she absolutely fabulous? Enjoy!

A few days ago, I went Christmas Shopping. I went to pay for my parking ticket once I was ready to go home but the machine swallowed my ticket. Don’t you just hate it when that happens?

So there’s a button to press when you are in need of assistance. I looked around, unfortunately the foyer was empty (unusually) and I really didn’t fancy trekking all the way to the entrance of the multi-storey to get to the office when I had a pushchair with me and my car was at the top!

I’ve been in this situation before. I’ve pressed the button and talked into the little holes next to the button which I assume is the speaker;

“Hi, um, I am Deaf so won’t hear you if you respond, but could you please send someone up to the Level three ticket machines as I can’t get my ticket back out!”

Speaking that into what feels like thin air, in a public space, with no idea if they’re talking back at you or even if they’ve “answered” the button call can make you feel like a right banana.

I heard some sort of noise back. But no one came. In the end I did a bit of a sightseeing trip around the car park to find them, only to find out they’d told me what to do in reply! Which part of “I am Deaf” did you not understand?

This time, fortunately, in the nick of time a lovely couple came into the foyer to pay for their ticket and I asked them if they’d do the listening for me and I got out without trouble, but it did remind me of the above occasion and made me wish once again that there was a text service at intercoms. Perhaps like MSN or internet online chatting services you can get, after all they put Braille on buttons don’t they?

I’ve encountered intercoms too much in my lifetime that I care for. I have a Hearing husband which helped when I arrived at the Maternity hospital, in the full throes of labour in the middle of the night, faced with an intercom before gaining entry. What if he had been deaf too? A Deaf woman could potentially be left waiting longer to be let in, while a member of staff made their way to the door to check who it was after hearing “Please let me in” but not getting an answer to the question “What’s your name please?”.

I don’t get the consistency of machines coming in-between people these days. Whatever happened to just driving up to the window at the drive thru for a MacDonald’s or KFC for example, to make your order? Why do I now have to use an intercom to order and then drive up to the window and give my money to the same person I’ve just been talking to anyway? They tell me I can just bypass the intercom and go straight up to the window, but have you done that and then come face to face with a grumpy looking teenager who despite me talking into the intercom hoping that he could hear me “I am Deaf, I’ll order at the window” is incensed with me for some reason and talks to me looking in the opposite direction. Defeats the point of the object really. I may as well have ordered my Big Mac and Happy Meal back where I started. Some Deaf Awareness training really wouldn’t go amiss.

Then there was the time when an Audiology department kept trying to phone me to arrange an appointment. They had my address, they had my e mail address, but no, each and every time they’d phone. My husband would always take the call, and they’d always ask to speak to me. An AUDIOLOGY department! Confuddled? So was I.

So this is the big week. I find out on Wednesday what The.Deal.Will.Be.

I already know quite a lot though. I’ve had communications via e mail to confirm that my funding has been approved, (wow! How quick!) and they’ve pencilled me in for the 22nd December. Wednesday’s appointment will provide me with answers to my (many) questions, and hopefully they’ll tell me what the results of the various tests were. I’d particularly like to see the scans for a start!

I can’t commit 100% that it’s really happening. But Oh.My.Goodness, what a turnaround! I think 2010 is going to be a good one :-)

It suddenly occurred to me the other day, that if a new parent who had just found out that their baby had a hearing loss, stumbled across this blog one day, they perhaps might be rather upset that what I have to say about being a Deaf person isn’t hugely positive at times. This really bothered me, so I’ve decided to write a positive post about being Deaf.

Yes, having a hearing loss of any kind is hard. That goes without saying. The human being was built to get by in life with five senses, so to lose any one of them provides a disadvantage straight away.

I want a cochlear implant, because I believe that things have just got that bit too hard for me now. But I strongly believe that I will still be a Deaf person if I get it done and I am proud to be. As soon as the processor is switched off, either for swimming, or when I go to bed, I will revert back to the silence that being deaf provides. I really don’t mind being Deaf, it’s a way of life rather than a problem. But some ways of life are harder than others and some roads are roads that you can’t choose to take. But it’s still the road you’re on, and it’s still the road of life that is all you know and you can find positives in any situation.

Sleep is a good place to start with the positives. There have been times when I’ve woken up in the morning after a good night’s sleep to look at my husband to say “good morning” only to be faced with a rather weary looking man.

“Didn’t sleep well dear?” I might ask.

“No, it was too windy” He might reply.

This amuses me, how can something like the wind keep you awake? It’s just air moving quite fast! But apparently the wind can make loud whooshing sounds down the side of the house which echoes and is very noisy. Also, it can knock things over which crash and bang in the night and this can be heard up in the bedroom. This, as well as thunderstorms, heavy rain or even something like a silly driver vrooming up and down the street can keep a hearing person awake whereas I sleep soundly through it. How good is that? Unless there’s something on my mind, or I’m unwell – then I am pretty much guaranteed a good night’s sleep :-D

Sometimes, the baby wakes in the night. If it’s my turn to get up, my husband will give me a nudge as he’ll wake and then let me know. But if it’s not my turn, he’ll just get up but I’m not disturbed! That’s quite a bonus.

Hearing Aid users (as not every Deaf person chooses to, or can use a hearing aid) have the option of silence if we wish. Often, if I am travelling on a long car journey and the other half is driving, I can settle back in my seat and switch the hearing aid off for some peace and quiet. The vibrations of the car engine are often quite soothing and I can nod off with ease if I’m comfortable enough. There are also times when the X Box game that is playing on the telly, or the big one is playing with a noisy toy and the silence is welcomed. I have to say, it’s also a huge soother for a headache if you’ve got a hearing loss and sounds of any kind are just annoying you, it’s often a big relief to just switch off.

Whenever I had exams at school, I would always take my hearing aid out. The quietness of the school hall was always disturbed by the odd door banging, teacher’s footsteps or the swishing of my peers turning over their pages. The hearing aid can often pick up some pretty quiet sounds if the ambience is right – and concentration during examinations is paramount of course! Pure silence (albeit the odd bout of tinnitus) was a godsend during this time.

A great skill that most Deaf people acquire by default is Lip Reading. As a hearing person, have you ever tried to work out what the footballers are saying to the referee during a premiership game? Or perhaps someone was trying to tell you something from the other side of a crowded room? Most people can lip read to some extent, but if you can lip read fluently it’s a great skill to have. Sign Language obviously helps in many situations – you don’t have to trek across to the person you’re trying to talk to if it’s not necessary and a conversation can be held at distance, but if you’re with someone who doesn’t sign, you don’t sign yourself or you’re trying to be discreet – lip reading can get you far!

We are also more expressive by nature and also extremely visual. I find that I notice things so much more and spot things easily. For example, I might spot that my Mum’s car is driving down the street in the opposite direction to us far quicker than my husband will – because my head has spotted the make, colour, registration plate AND then looked at the driver in the space of seconds. My eyes see things and record things in nanoseconds. I like to think, that my photography is aided by this extended visual skill. I also have a very good sense of smell. I think that even though a Deaf person is lacking in one sense, the others are very much heightened and this can come in very useful.

As I mentioned before, there are often times when silence is a godsend, switching off the hearing aid can help concentration, headaches and provide peace and quiet at times where a hearing person simply cannot avoid it. There are also however, many sounds that we can’t hear that can irritate a hearing person on a daily basis. My husband once got incredibly frustrated by a broken toy in the girl’s room that kept meowing, although very quiet and intermitted, he couldn’t ignore it as it was irritating him! I also remember a time when my sister used to get cross by the noisy tick tock of the clock that hung up in the wall in my bedroom. Said clock got hidden in my underwear drawer when my Mum had guests to stay! When someone is tired, grumpy or stressed, the simplest of repeated sounds can aggravate the situation. Drumming of fingers, tapping of a keyboard and also, so I’m told, the squeaking of a chair. Many of these things are sounds that a Deaf person would simply not hear. It amazes me often, the ability of a hearing ear – the extent to which a normal ear can hear (change in someone’s pocket half way down the field anyone? Really? Seriously? Wow!) but in actual fact, I totally get that there are times when it’s a blessing not to hear absolutely everything in your surroundings.

Playing the “Deaf Card” is not something I look at doing fondly, but it’s often something that can work out to your advantage in the right situations. When I was at university in London, I used to travel home by train frequently and the train always left Euston Station. Anyone who has travelled by train at any point in their lives, I imagine has encountered Euston station at some point. If you’re travelling outwards, at peak times you’re lucky to get a seat on the train due to the streams of people that run to the carriages as soon as the platform has been announced. A huge disadvantage to being having a hearing impairment however, is that Euston station announce platform numbers by tannoy and there is a delay before it appears on the overhead screens. Not good for moi, standing waiting patiently for it to come up on the screen while everyone else bolts to the train and grabs the best seats leaving me trailing behind and standing by the smelly toilet for the 2 hour (as it was then) journey home. One day, sick of this unfair disadvantage I decided to do something about it. I spoke to one of the staff at a desk in the station, explained the situation and asked him if he’d tell me when the tannoy was announced what platform it was so I could run along like the rest of them. He went the extra mile – he took me himself to the platform ahead of everyone else, so I could find the very best seat in peace before the hubbub of business men in suits and ties swarmed on. How lovely! I even had time to get my magazine and water bottle out, find somewhere for my bag on the luggage rack and settle into my seat comfortably before the mob had even heard where we were departing from. This only happened twice in my three years of commuting but ever looking for the positive in any situation, this was definitely high on the charts for “Deaf Card” usage :-)

There’s also, last but definitely NOT least, is the Deaf community. I’ve spoken about the deaf community before. We have a language that is commonly spoken, and I’m not talking about sign language (which is a fantastic shared expression of communication on it’s own), I’m talking about the acknowledgement and automatic acceptance that we are the same. We all understand, we can share our experiences, frustrations, we are on common ground. The Deaf community is huge, but it’s also incredibly small too – you will always know somebody in the room when a group of Deaf people get together. I could go on for hours about the brilliance of Deaf people but I’ll just settle for one example for now.

I appeared on See Hear once, a magazine programme on the telly which explores all things Deaf and Hearing impaired. I didn’t know the person I was communicating by email with, arranging my journey and what I needed for my interview but once I was there I couldn’t believe it when I saw the office. I went to school with one of the researchers, I knew of the presenter as his brother was someone several years below me at school and I had met another of the staff at a party I had attended many moons before. I’ve already told you about a wedding I attended a few months ago, fearing i wouldn’t know many of the other guests, I was astounded when I bumped into several people who I knew from many walks of my life. It’s not that I get about as such, it’s just that you really are part of a special community in the Deaf world. You are remembered, you remember faces, friends of friends always know of someone you know completely unrelated. It’s a privilege to be part of it.

I’m not sure if I’ll ever help put anyone’s mind at ease with this post. But I have enjoyed writing it nonetheless. Do comment if you’d like to ask questions no matter what time or age it is when you read this. I can certainly name more positives to being having a hearing loss – but I’d better go to bed for now.

More soon folks, the BIG appointment is on the 9th. Eeeek!

x

Eeeeeeeeek!

I have just had an e mail, I have been asked which CI I would like, and what colour!

In the words of my husband: “Woot!”

:-D

The day they made me a bit dizzy!

So last Thursday I woke up feeling rough. I’d been really ill the day before and was suffering from some serious migraines as well. But fortunately for me, I had a lift to the hospital with the fabulous Dollar who came along to help out with the small one and do the driving duties. I had been told that I shouldn’t drive for 2 hours post appointment, and as the hospital is some 20 odd miles away, I figured I needed a hand!

I had two appointments, one after other. 5 stars to the CI team at Selly Oak for giving me appointments on the same day to avoid me travelling too much. Finding child care, getting back home in time to pick my big girl from Pre-School, plus generally having support with me, means that doing some appointments all in one has been a huge help.

Upon arrival, feeling very flustered indeed as I was 30 minutes late despite leaving 1.5 hours prior to the appointment (for a normal 45 minute trip) due to terrible traffic, I was introduced to the lovely lady and man who were going to do my tests. The first one was the one I was absolutely dreading, the one where they were going to test my balance.

I always had bad balancing skills when I was younger. A simple roly poly on the floor could make me dizzy for ages. I remember being about six or seven years old in P.E one day at school and being made a fuss of me when I managed to walk across the balance beam for the first time unaided. I can remember it clearly as it just so happened that my Mum (who was working at the school at the time) was passing the hall at that precise moment and saw me do it! I remember seeing her beaming at me with pride as it was quite an achievement :-D

I was 11 years old when I finally had some balance tests. We are talking more than 15 years ago to be fair, but goodness me it was torture! I was in London and they were trying to find out exactly what it was that was causing my deafness. I was sat on a chair and spun around really really fast, stopped suddenly and the doctors would peer into my eyes. Repeat as necessary, several times. After this, with my head spinning, I had to walk in as straight line as I could, turn round on the spot and do various other activities. I imagine they were looking to see how long it took me to regain my balance, and what my eyes did when dizzy to get more information as to what was going on. 

I suffered frequent severe Vertigo attacks as a child, which made me very sick and I was confined to bed for days at a time. As I got older each time I had one, I lost a bit more hearing in quantity or quality each time. The attacks are far less frequent now, I’ve been told that as my hearing gets worse, the attacks lessen and perhaps even one day, when I don’t have them anymore it’ll be because my hearing has gone completely. I don’t know for sure what the real case is, or what will happen eventually, but it does make sense and does install a little bit of fear into me.

So you can imagine, that I was feeling a little bit nervous about being made dizzy, and scared that I’d be swung around on some spinning chair again. And you can then imagine my relief when I was told it’d be nothing like the sort!

I had to lie down on a very comfortable looking bed which was black leather and big enough for two! I then had to wear a huge visor over my eyes which I fear made me look a little bit like Darth Vader. The visor had had a camera inside which would then watch the reaction in my eyes to the test, which would be completely natural as the brain couldn’t use the eyes to focus on anything. It needed to be completely dark inside the visor, and unfortunately I have a funny shaped nose or cheek it seems, and had to stick some tissue up into a gap to hide the light peeping in! I then had warm water pumped into one ear for 30 seconds and I had to keep my eyes open so the camera could record what was happening.

Did you know that if water is pumped into your ear, and hits your eardrum for an amount of time, it can affect your balance? Even though I couldn’t see a thing, the room was spinning! It was horrible and very unpleasant. I couldn’t see a thing, couldn’t hear anything and was told to count in twos for as long as I could, to keep my brain occupied so it wouldn’t try to imagine something I could see for the eyes to focus on. Oh, and the lady said the water would be warm, 7 degrees warmer than my body temperature she said. I am someone who has lukewarm baths, I am someone who doesn’t like the summer, I am somebody who does not get cold easily. That water was HOT!

She did the procedure for both ears, and then again for my left ear as it was established some light had been peeping through the first time. (More tissue was henceforth stuffed). I asked what they had been able to see, and I was shown some demo videos of other tests been done. It is really creepy what you can see, the eyes dart to the left and the right at various speeds. Apparently mine was quite fast, but the good news is that the eyes reacted equally to the tests on both ears despite my history of balance problems through vertigo. I understand that this is a good thing, as the operation for the CI has a small risk of increasing balance difficulties, so if your balance is bad to start with, it’s something they need to discuss with you. If it’s ok, then the risk is going to be fairly minimal. So Yay!

The second test was the auditory hearing test where I had three small pads placed behind each ear and in the centre of my forehead which would pick up nerve readings when putting sounds into my ears. I then had to lie on the comfy bed again, close my eyes and they’d switch the light off. I had to relax as much as I could and guess what – she even said that if I fell asleep then that would be great! I don’t think I did fall asleep, but the baby had been up all night and I was very tired, so the rest was very welcome, it was certainly an easy task compared to the dizzy test! It took about 20-30 minutes, and I did not have to do a thing. The lady said that I might hear some clicks during the process but I didn’t hear them, I can’t remember the last time I had that much peace and quiet!! The results, apparently were just what they’d expect from someone with my level of deafness, so I guess that means my normal hearing tests show an accurate record of what loss I have.

This morning, I received a letter. My final assessment appointment is on the 9th December. This will be when they evaluate all the reports with me and say YES or NO. Eeeeeeeeeek! I’ll let you know the outcome of course :-)

No (Wo)man’s Land

I’ve spent a lot of this evening running up and down the stairs. My husband is out working late and both my girls have got a cough and cold. The light monitor keeps going off, as one girl coughs a little or perhaps makes a sniffle in their sleep, it makes the light go and of course I have to investigate each flash in case its a genuine one. I miss my husband on nights like these, he normally tells me if it was just a cough so I don’t need to bother going upstairs or if indeed there is a cry and one of them is awake. At least I’m getting some exercise!

Having a hearing husband is great, I rely on him hugely to make phone calls for me, listen out for the girls, tell me what adverts said on the television if it wasn’t subtitled, order food at restaurants if the waiter is hard to understand and generally be my ears. I never set out for a hearing partner though, it just happened that the man I wanted to marry turned out to be so. If I had ended up marrying a deaf man, I’d have been just as happy, we’d just have done things slightly differently I’m sure. There are many times, like this evening where I have to do things differently, and adapt to my needs and there are plenty of times when I am on my own and have to deal with the situation there and then regardless of how, so I know I’d not have batted an eyelid, should my life partner have had no hearing either.

The point is, I do get the “No Man’s Land” feeling quite frequently still. I am very much part of the Deaf world, but also very much part of the Hearing world. Sometimes I don’t feel I belong wholly in either. I have many Deaf friends, I can use sign language, I need help to hear, have flashing lights etc but my family are also all hearing, my colleagues are all hearing, I can speak well and have always adapted the best I can. Many people have told me, upon meeting that they didn’t realise I was Deaf to start with.

Being in No Man’s Land, comes from living and working in a hearing world predominantly but still having the needs of a Deaf person. As I am so used to the hearing world, I yearn to be more accepted by it. But I still struggle so much in situations where I simply cannot hear or follow what is going on. Equally, I yearn to be more accepted by the Deaf world, I certainly feel more at home in the Deaf community to be quite honest, signing comes naturally to me, I can be understood and I can understand but I feel out of touch. It seems to be one without the other when it comes to my life v hearing/deaf world. I went to a wedding earlier on in the year where the bride and groom were both deaf and probably 99% of the guests were too. I went along with a mutual friend and it was like everyone knew each other. I was certainly surprised at how many people I did know there from different realms of my life; it’s amazing how wide yet close knit we are! But, I still had that yearning feeling, to be more involved, know more people, go to more Deaf events and as my life is focussed around the hearing world mostly, it’s hard to keep up to date.

I may come back to this post and re-edit. Its hard to explain exactly where I’m coming from and I’m not sure that I have done so. I do want to clarify though that often, it is actually brilliant to be part of both worlds. I feel that the Deaf community offer me so much, but at the end of the day I’m involved naturally, in the hearing community a whole lot more so it’s a bit like my body spans No Man’s land, but I have a few fingers in each.

I have two big appointments on Thursday by the way. I will let you know how they go x

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