2 Nov
At the weekend, myself and three of my best girlfriends went for a bit of a pamper at the Fairlawns spa in Aldridge, Walsall. I wanted to write about the experience as I thought a positive post would be nice to write.
We had an excellent time! It was really super and just what all four of us needed and we had a good catch up, laugh as well as pampering ourselves to the full extent that the spa provided.
We were really looked after by the staff at the spa and I have to tell you about it.
I first noticed the level of deaf awareness when I was e mailing the spa to arrange booking. They were very good at using e mail to communicate with me, even finding a way for me to pay the bill by e mail. Normally, businesses prefer to conduct business over the phone, especially where money is concerned and then even then, they want to speak to the person who’s name is on the card. I cannot use the phone, so this often means I gain a new little bald spot on my head every time I have to do something like this as they don’t like someone else to speak on my behalf.
But Fairlawns were brilliant, they let me communicate by e mail and even mailed me a couple of weeks prior to our stay to ask a few questions about our disability so they could put in place a procedure in case of an emergency, already working out that we would be unable to hear any alarm.
I’m not sure if it is just that they are either extremely aware of disabilities, deafness in particular and the different needs that stem from them, or if they perhaps have had a Deaf guest before so have experience, but this really impressed me as it meant that I didn’t need to do any thinking, or go the extra mile to make sure they were aware of what consequences there are to have 4 deaf women staying in a hotel.
When we arrived, I was given a letter from the manager, with details of what would happen if there was an alarm during the night. The on site manager would come to our rooms and flick the light on and off to alert us. Excellent. The staff were also clear, friendly and patient with us right from the start, we couldn’t fault them.
We were shown round by a member of staff who made sure she faced us when she spoke to us, gave us an opportunity to look at where she was pointing before she spoke to tell us what she was pointing at. The lovely guy who took our orders in the (very posh) restaurant was great, really clear to understand and at one point spotted that we were unsure about parts of the menu, and came over and offered to explain which was great as it can be hard to approach staff sometimes for fear of understanding them especially in noisy environments like restaurants.
Everything was written down for us, the mud ritual experience that we opted to take part in as part of our spa package was explained to us carefully as well as paper provided with it all written down, what we had to do which was a huge help as we had no hearing aids in at this point due to the nature of the ritual and damage that would definitely have been caused to them by the mud, steam and water involved. We felt extremely cared for and we will definitely be going back.
I have written to them, to thank the staff for our fantastic stay. It’s always such a pleasure to meet an organisation that know what to do and how to deal with needs such as ours. Although most places do not have a problem putting procedures and operations in place to help a group of people such as us, it is usually us that has to tell them what needs to be done, so it was very refreshing to go somewhere where we didn’t need to do this.
5 stars for Fairlawns, they’re recommended 😀
27 Oct
I’m really sorry for the length of time it has taken for me to write this, it’s been a mad few weeks.
I need to explain a bit more about why I chose this title for the blog. It’s been something that has been on my mind a lot lately and I need to talk about it. I have a lot of hearing friends, I am the only one who is deaf in my family and have only ever worked in hearing environments. I am very used to getting on in the Hearing world but some days I think “it shouldn’t be this hard”.
Last month I finally plucked up the courage to start attending two sessions at the local Early Years centre with my baby girl. I’ve always wanted to go to Mum and Baby type groups, but lack hugely in confidence as it means meeting new people which I find hard enough, let alone in a noisy room where I have a baby to keep an eye on as well. I attempted to go to a “Stay and Play” session when my oldest was about 18 months old, but although the Health Visitor was kind, she approached the issue of my deafness in totally the wrong way. She told the other parents who were there that I was deaf which unfortunately then meant that for some reason, they then did not speak to me the entire time I was there instead preferring to huddle up together and ignore that I was there at all. I know that bad luck probably had something to do with it, but nonetheless I never went back.
This time, after relaying my concerns to my lovely new Health Visitor, she suggested that I went with someone from the Family Support Team who could accompany me in the role of a friend and for moral support. The family support worker is called Mandy, and I really really couldn’t have got through the last couple of months without her. She has been absolutely fantastic.
She’s come with me to Stay and Play sessions on a Thursday, and also to “Bounce and Rhyme” on a Friday and she has been a godsend. She’s helped with the introductions, told me what the joke was if I missed it, without making me feel singled out. She keeps me upbeat and informed, and if I’m struggling to keep up, keeps me company while I have a break with the following of what’s going on. I feel indebted to Mandy, she’s super and completely rocks. She’s also helped me with some phone calls, and is accompanying me to a meeting with a college advisor for when I start my photography course.
I have mentioned before about what happens when I’m the only deaf one in a crowd so I do worry that I perhaps come across as a bit moansome on this blog but I do want to make sure I clarify a few things.
I am the Deaf one about 85% of the time in my day to day life. However, it’s not that I think other people think of me as the Deaf one, more so, that I feel the effects of being the Deaf one. For example, I went out for a lovely meal with some hearing friends the other week whilst my oldest was at preschool and just had the small one with me. It was a lovely day and I really enjoyed meeting up with them, but as there were five of us in total, I really struggled to follow conversation. We were in a noisy restaurant and I had my daughter to see to, as well as eat my food and I can’t listen and do those things at the same time. I don’t get the chance to meet with these particularly lovely people very often either, as are they quite new friends in the grand scheme of things, so their lip patterns aren’t as familiar to me as friends that I do see on a more day to day basis. This meant that I didn’t talk much during the meal, as I wasn’t sure what was being said and only really got the drift as conversation was quick and lively. I’ve often found that in these situations, I’ll perk up with a comment, and then the people I’m with get confused as what I’ve said doesn’t fit in with what the conversation was at that point, and more so about three or four conversations ago! So I prefer to keep quiet unless I’m absolutely sure but then in a catch 22 situation, I then worry that people think I’m not interested, or that I’m dull as I have nothing to say.
It isn’t just with friends that I find it hard, I do struggle with family get togethers too, but without the worrying of what they think of me when I don’t say much, or look a bit vacant. I also don’t worry as much about being a nuisance asking what was said if I missed something. I know it’s not that I am a nuisance whilst with friends but I feel it disrupts the flow of conversation more and I’d hate for someone to get annoyed but family are stuck with me 😉
I hate being singled out and I think that has come from some bad reactions from people knowing I am Deaf. The example I gave earlier, about the first stay and play session that I went to with my elder daughter is a good one. Another is when my car was broken down, so I took the bus into town whilst pregnant with my younger daughter, and being accompanied with my older daughter who was 2.5yrs old at the time. Laden with shopping, I took the bus home, not feeling hugely familiar with the bus route as I have never needed to take the bus previously due to driving, and prior to driving living close enough to walk into town. I told the bus driver I needed the “top of such and such road”, he grumbled something which I didn’t catch so I just took it to mean ok, it’s this much and paid my ticket. Some time later, the bus stopped at the bottom of said road despite no one getting on or off. The doors were opened, and the bus stayed still. After a few minutes, I realised that everyone was looking at me and eventually one lady beckoned that the bus driver was yelling at me. Feeling mortified that I was I had been staring out of the window unawares while this was happening, I went to speak to him to find out what was up. He barked at me to get off the bus as that was where I had paid up to. I didn’t understand a word he said, but as he waved his hands around and pointed to the door the penny dropped and I realised we had different ideas of which was the “top” of such and such road and what he had grumbled obviously had some reference to establishing which end. I explained that I needed the other end, and he irritably asked for more money which I then had to pay very publically whilst everyone on the bus looked on. I considered getting off there and then rather than paying the extra (it cost more in two tickets, than one) but being heavily pregnant, carrying shopping and having a 2 year old with me in the dark to walk a mile to my house from that point was not an attractive option.
Aside from the offensive nature of the driver, I was actually most upset about the fact that I had been singled out and embarrassed in front of the entire bus while he had yelled to me from the drivers seat that this was my stop. I felt I wanted to justify it to everyone, I wanted to explain why I hadn’t heard him, I wasn’t stupid, away with the fairies or ignorant, I was Deaf and I simply hadn’t heard him. But my cheeks were too red and my head too much put on the spot to talk coherently, not to mention that I didn’t want my 2 year old to see me in such a state.
I’ve always wanted to be seen as normal, and my deafness secondary. I am not ashamed to be deaf, but it isn’t what makes me, it’s just a part of me. I want to be ME primarily and deaf afterwards. It drives me mad when so rarely a Deaf character appears on a soap, and they make it all about the character being deaf – not a character that happens to be deaf. There’s a big difference. I sometimes feel that I’ve lost my identity a bit when I am singled out. Yes I’m Deaf, but it’s not all that I am. I am also someone who loves photography, I am also someone who is a Mum to two lovely little girls, I am also someone who used to be secretary to a Netball team, I am also a wife, and a daughter and a sister. I like to think that there are far more things that are interesting, before the fact that I have a hearing loss.
I think I was quite young when I realised that I was the Deaf one and understood what that meant. My Mum tells me of this story when my sister reached the age of about 2 or 3, and I went upstairs and came down with an old hearing aid for her. It was normal to me, at the tender age of 5 ish, that when you reached a certain age, you wore hearing aids. My Mum had to sit me down and explain, that my sister didn’t need them, and it was just that my ears didn’t work but most people’s did. Apparently once I described it as “My ears don’t talk”, how cute was I? 😀 It is quite a big thing, for a child to come to that realisation that some people have problems with their ears, eyes, legs etc, and it’s not the same for everyone else. For a long time, my daughter thought that all Mummies were deaf, but at the age of 3.5yrs is slowly starting to understand. She tells me that my ears don’t work, but hers do. She asks me what a noise was, knowing quite well that I didn’t hear it and she’ll then say “I think it was the toy falling off the table Mummy” as if she enjoys telling me what it was. I do live in the little moments where she offers me information, and I love how sweet she is when I ask if the baby is awake yet and she crooks her neck to listen, and then tells me yes or no. It makes me a little sad that she already has the job of being my ears more often than not at the tender age she is and I wish that she didn’t have to, but I do like, in a funny kind of way the extra bit of bonding that happens between her and myself that she seems to thrive on, that I need her too as well as she needs me.
I do get upset though, at being a Deaf mum very often though. I like to think, on the whole that being Deaf does not mean I cannot do anything anyone else can do. I have a degree, a job, a house, a family. But the little things get me down frequently. Not being able to call the doctors surgery for an appointment for my own baby girl, constantly worrying about whether or not one day I’ll be on my own with the girls and will need to call 999 and waste precious time finding someone else to do it for me. Standing at the school gates, wanting to join in on a conversation other parents are having, to cement friendships that my daughter is making or having a chat with her on the way home from preschool about what she can see out of the window instead of sitting in silence. I feel that not only are there inconveniences, but also areas where she misses out, as do I.
Being the Deaf one is something I have always just got used to, and isn’t a problem on the whole, but perhaps since having children I’ve realised just how much I do have to just get used to. It was always just a given that I had to ask the receptionist at the doctors surgery to ask the GP to come out and get me when it was my turn, rather than use the tannoy system, but these days I get paranoid that my daughters will one day be embarrassed by this. I also worry that I will miss crucial information, if a teacher needs to talk to me and there are lots of noisy children around. More often than not, I will ask if I have missed something but there are often times when I don’t realise that I’ve missed something she has said as well. I’m already known as the Deaf Mum, they are fantastically accommodating at preschool, allowing me to use text messages instead of telephoning them if I need to contact them, but this does single me out although thankfully is fairly discreet as the other parents won’t know I use this method.
Its important to me that everyone knows I am not embarrassed to be deaf, far from it. It’s just a part of my life, but I do hate being singled out because of it as I just want to be one of the rest. Fame would never suit me, I would feel uncomfortable being in the spotlight, everyone knowing my business and having my photograph taken all the time! The same principle applies, I like to just merge in with the crowd and sometimes being deaf prevents this. At university I always had to sit in the front row rather than with the cool kids at the back, in my first full time job, I had to use this microphone system that sat in the middle of the table like an eye sore with a long lead that led back to my chair and connected to a loop system that sat round my neck.
I have high hopes that the CI will help improve all this. I know it won’t be a cure, but to be honest I’m not sure if I want a cure. I love the Deaf community and what being Deaf automatically involves me in, I like that I can switch off at the end of the night and sleep well due to the quiet. I just want it to be a bit easier that’s all, and I want to be able rely less on others, when it comes to doing the dull and boring things that Mums have to do for their children, I want to do those dull and boring things myself and feel like a proper Mummy to my children.
24 Oct
I’m really sorry to those who have been checking the blog for an update about my appointment on the 2nd. I’ve had a few very busy weeks and lost my blogging mojo. My photo blog was affected too.
Anyway, I have a few blog posts in action, so watch this space, but just to let you know that the scans on the 2nd October went well. I haven’t had any further appointments through the post yet, but I know I have some due as the next step is a sensory hearing test, plus some balance tests too (I am so not looking forward to that one!). I won’t hear the results of the scans until I see the consultant next, I might chase them up in a week or so if I haven’t heard anything more.
Although the scans themselves went fine, I was very glad when they were over. The MRI scan involved having to take my hearing aid and my glasses off and this meant I couldn’t hear a thing, or see very much whilst in a machine that rumbled a lot and having to stay very still. You lose all sense of time, and whilst in the tunnel that you’re pushed into you do have a small mirror that shows the doors so you know when someone is coming back in, it’s a bit scary and not being able to hear or see (much), you feel quite vulnerable!
I would like to know though, why, when the one time you need to be incredibly still, you get an itch on the bottom of your foot? I’d also like to know if swallowing counts as moving? Whilst stuck in the tiny tunnel of the MRI machine, this is what I thought about!
The CT wasn’t as bad, as it’s not quite so claustrophobic. You’re also not left for as long! Although you do feel a little bit like you’ve been transported onto the Enterprise the way the lights and machinery swishes around you. But I will name and praise the lovely staff in the scan department at the Queen Elizabeth Hospital (although the signage to the carpark is apalling!) as the nurse in particular who prepped me for each scan was lovely and kept me informed as to what was going to happen. Knowledge is key!
Will write again soon.
13 Oct
Really sorry for not posting recently, I’ve had a mad few weeks (including my birthday last week, Happy Birthday to meeee) but have not forgotten that I owe this blog a post or two.
Will try and write this weekend.
Bryonyx
22 Sep
Had my next set of appointments today at Selly Oak. Came away feeling really good about it all. I was really nervous about going today because I had both girls with me, and my husband couldn’t make it to help out but in the end it just reinforced what a fabulous team they are there. They were so good and so patient, allowing for the small delays (yes you can have another rice cake, no you can’t climb the chair etc etc)! The Small One unfortunately, having just cut her first tooth was very grumpy and the Big One was being a typical 3 year old but I never felt that having them there was an inconvenience to them. This helps me so much as it’s often hard enough being a Mum, out and about with two children on your own, let alone to appointments that are of incredible importance to you. You put your children first so often, so when it’s time to sort something out for you, it can be hard to find professionals who will cater for the fact that you have baggage. I’ve been fortunate to have lots of help in looking after them whilst I’ve been to all my appointments so far, but at least I know now that if childcare is not available, I do have a kind and friendly team on my side.
So anyway, my first appointment was with the Hearing Specialist again, re-evaluating the hearing aid that she gave me the last time I was there. Over the last 3 weeks I’ve been wearing this super new hearing aid which I understand is Phonak’s newest and most powerful hearing aid Naida I have slowly got used to it and am much happier with it now than I was when I first started wearing it. The volume is incredible, I have thoroughly enjoyed hearing more things than I ever have before. I even heard the baby crying upstairs last night as the telly was off and there was no other sound – something of a novelty to me, having always needed to rely on the flashing light before. I’ll carry on using the light of course, if there’s any noise downstairs I still can’t hear noise from upstairs, but wow –on that occasion, to have heard her all by myself, and to be able to run to her without the need of someone else to tell me she was crying, was just fantastic.
However there have been issues with clarity, especially in noisy environments. Although I’ve got used to the slightly different way that everything sounds (that you get whenever you try a new aid) what I couldn’t get used to, was the difficulty in singling out voice in particular, in noisy environments such as the supermarket, or in a restaurant. Everything was just distortion, too much sound wrapping round each other and my head couldn’t work head or tail what was going on.
They had a look and installed a program which I can set the aid to, in noisy environments and this is something I cannot wait to try out. Depending on how I get on, it may or may not work and if it does, sorted. If it doesn’t do the job, then I’ll simply go back next time and let them know and they’ll try something else. How exciting though, that technology has improved so much that they can just do something at the flick of a switch!
The second problem I’ve found is that as it’s such a powerful hearing aid, I’ve had a lot of problems with feedback, especially when I wear my hair down, which is something I like to do on occasion! After explaining, and demonstrating to them what happened when I closed my hand in nearer to the aid on my ear, they programmed in an “add on” which is basically an anti-feedback program which has helped no end! Wow.
I then had to do another speech recognition test, where I had to listen to the computer, with no lip pattern and tell them what I heard the voice say. Last time with my old hearing aid I got 42%. She didn’t say what I got this time, but she did say it was a lot worse than last time, with my new hearing aid. I wasn’t surprised, I got hardly anything that the computer said. I found it quite hard actually, it’s a bit embarrassing and you feel almost sheepish and like you’re letting them down, sitting there just shaking your head at each sentence when they’re looking at you eager for you to catch something. I know that’s silly, but it’s similar when you’re having a hearing test and you realise that although you can’t hear anything, you know they’re putting some sounds through and you do an uncomfortable shift in your chair as you wonder if they think you’re putting it on.
This may or may not make sense to you, but it is a good and bad thing that I got a worse result with the speech recognition result compared to last time. It’s a shame that the hearing aid hasn’t provided the clarity that I require, but it does prove that the hearing aids just aren’t going to tick every box for me with what I need. I need the volume that this hearing aid does indeed provide (yet still I’m wanting more!), but the more volume that the hearing aid gives, the more it reduces the clarity of what you can hear. I imagine that if your ears could take incredibly loud voice, the louder it got for you, the harder it would be to make out what was being said? You’ll have to correct me if I’m wrong, but that’s how I am understanding it at the moment. The old hearing aid was great for clarity of sounds, but what good is clarity if I can hardly hear anything to make out as the aid is too quiet?
So, this does mean that a CI is looking more and more appealing, along with clarity will also be volume and vice versa. I am feeling all the more sure each time I visit the HARC at Selly Oak that a CI is what I want.
My second appointment, straight after the hearing aid re-jigging was with the hearing therapist again. She explained that she’s found a lady who lives in the next town to me, who had a CI in 2007, and who had a 3 year old daughter and she had similar worries to me. I’ve got her e mail address now, I’ll e mail her this week and arrange to meet up. How nerve-wracking! But I know it’ll be really good for me at the same time.
We talked some more about how I feel about the CI and what my expectations are. I had to complete a couple of questionnaires and the hearing therapist went through my results. My expectations of a CI, it appears, are quite realistic mostly, but in some areas it seems that I am underestimating what a CI can do. A CI will help immensely with understanding voice without lipreading, to me this just seems impossible, can this really be the case? Will I, for the first time in my entire life, be able to understand the radio? I may not (in which case I won’t miss it) but it’s certainly not impossible and some people have found that they can learn how to listen to the radio after a CI when they couldn’t before. Oh my goodness me, wow. I have visions in my head of now being able to listen to the traffic news and therefore know on the days when to avoid the motorway home from work and take the back routes instead, how brilliant would that be not to be stuck in a humongous jam on the M6 just because I didn’t have access to that information?
Using the telephone, watching the television without subtitles (something I would never dream of doing at the moment) and following in social situations, could all be easier. It’s not going to wave a wand and make me hearing, but even just a small improvement will be such a big deal for me. Once I’m an established CI user, I won’t have to put quite so much energy into understanding people, lipreading and following what is going on, so I’ll have more energy and brain space for other things. I may last longer and not be the first to go home. I will find events where I have the children easier, as if my head has to turn to check on the baby whilst a fellow mum is talking to me, I will be less likely to miss what was said in those split seconds. This is all a dream to me. I have always “just got by” but I’ve missed out on so much. Too many jokes have gone over the top of my head where I’ve just smiled and laughed pretending i got it so not to come across as gormless or stick out like a sore thumb, or if someone repeated said joke to me it’s never quite as funny the second time and you’re left giggling at the joke long after everyone else has finished being amused and the natural flow of the banter has been interrupted. I’d much rather have caught it first time round. There have been so many times when, with a group of hearing friends having a rapid conversation or debate that it’s taken me so long to work out who is talking, that someone else is talking instead and I simply cannot keep up. Often I find myself taking a break from it all, and having a look at my phone, or going to powder my nose even when I don’t need to. Taking that break means a fresh start when I return to the group – it’s more of a natural interruption to ask following a trip to the ladies; “What did I miss?”.
The hearing therapist was really positive about my chances getting of a CI being agreed to and I’m so excited about the prospect of life with one. I know that it will take several months after switch on, to get used to the new sounds, to learn everything again and it’ll all sound horrific to start with. But I just know it’ll be so so worth it in the end. Please keep your fingers crossed for me that the scans go well on the 2nd October (I have a CT and a MRI booked) and after the consultant receives the reports from all the people I’ve seen so far, they give me the go ahead. My toes are crossed too. It’s hard to walk these days.
Going on from today’s post, I’ve got another in mind that I’ll write tomorrow about BEING the deaf one. So please watch this space x
8 Sep
It’s probably about time that I told you a bit more about the appointments that I’ve had so far at Selly Oak hospital. I’ve had three, in three consecutive weeks. I cannot explain how pleased I am about this. At my local hospital I used to have to wait months for an appointment at a time and even then, they couldn’t seem to send me away happy so within a week of my very first meeting with the CI team, I had another appointment for just a week later to attend!
So top marks for efficiency indeed.
My first appointment was on Wednesday 19th August 2009 and it was basically a meeting with the CI team to discuss my situation, and initiate the investigating suitability process. Naturally the very first thing I had to do when I stepped through the doors was was to have a hearing test.
You’d think I would be used to hearing tests by now seeing as I have had them all my life. I used to really enjoy them as a small child as it meant lots of praise as I put another block in the box. But as I got older, the hearing tests got harder and involved the pressing of a button on a cable with a remote type thing whenever I heard something which was boring and tedious. I also started to realise that the long gaps between hearing one beep, and the next meant that there was something I wasn’t hearing and these gaps got more frequent. I never know what to do in these awkward moments. Do I turn my head? Has she finished with the test? Or do I carry on listening hard and staring at the floor with concentration waiting for the next beeeep and risk feeling a tad silly if I eventually get a tap on my shoulder that the test has indeed finished?
I’m not a huge fan of them anyway due to the effect they have on the dreaded Tinnitus. Unfortunately my Tinnitus is worse when I don’t have my hearing aid in, and can be triggered by sudden and isolated noises which you get in a hearing test. This often means that differentiating between the long beeps of the test and the Tinnitus is hard and I never know just quite how accurate the test is going to be. My results are always pretty much the same though, so I must be getting it right somewhere.
After the complimentary hearing test, I had to do something new. This was interesting, a speech recognition program! It basically consisted of a computer speaking at me and in the optimal environment (quiet room, no background noise) I had to listen and try to understand as much as I could what the computer was saying with my hearing aid only but without any kind of lip pattern to assist me. I didn’t get any of it at first, but as I got used to the voice and the type of sentences the computer was saying (“Good Morning” and “The Lady left the room” for example) I soon got the hang of it and I understand that I got 42% of the sentences correct. The criteria cut off is over 50% so although I fall within criteria at this point for a CI in this particular test, I did actually do really well and it proves that I am a very good hearing aid user. Yay me!
I then went to meet the CI team in the main hospital and all of a sudden got very nervous. My main worry was that they would tell me to stop being silly, you’re doing perfectly well as you are, you don’t fall into criteria at all and there is no way we’re going to give you a Cochlear Implant, all based on paper results only!
Of course I had nothing to worry about, they were absolutely lovely. And there is a lot more to giving someone a Cochlear Implant to looking at an audiogram! It was a little daunting walking into the room and seeing 6 people in there waiting for me but they soon made me feel completely at ease as they introduced themselves one by one. The main consultant asked me a few questions about my history and talked me through what they wanted to do to establish whether or not it was the right time for me to have a Cochlear Implant. I am to have a CT and MRI scan and to try some new hearing aids as well. He assured me that even if the decision in the end was that we do not go ahead at this point, I am on their books now and they will look after me and my hearing needs for the foreseeable future and the subject of a CI would be revisited again at another time. I would not be forgotten, that is the most important thing.
The main question that I had, at that point was actually quite a small one in the grand scheme of things, but a very important one to me. Ever since I “lost” the use of my Left ear, I have really struggled to find someone whether it be a ENT consultant, or an Audiologist, who understood why I refuse to wear a hearing aid in that ear. It seemed that they would only consider what they saw on paper which is that a hearing aid should benefit my Left ear and in actual fact, the Left ear is ever so slightly better than my Right. But what the audiogram doesn’t tell them is that as soon as I have a hearing aid in my Left ear, the quality of hearing I get is abysmal. Everything is distorted and muffled and it takes over any good clarity of hearing I do have left on the other side. In my case, quality is definitely more important than quantity.
I explained my concerns to the CI team and they immediately put my mind at rest. They told me that they did understand and that they have met many people with similar problems and they would never force me to wear a normal hearing aid in that ear if I didn’t want to. They really seemed to “get” me and for this, I was eternally grateful and left feeling incredibly positive and really looking forward to all the appointments that I had to come.
My next appointment was a week later on Tuesday 25th August 2009 with the Hearing Therapist. She was really nice and asked me a few questions initially about what I was hoping for from a Cochlear Implant. My answer ultimately is that I am really hoping for the use of some hearing in both ears again. I would like the CI in my Left ear and carry on using a hearing aid in my right. I am simply not coping as well with the hearing I have left any longer and would like a bit more of an easier ride.
She then explained to me a bit more about the CI itself. Where the electrodes are placed in the ear, and how it affects the cochlear (a CI provides hearing by skipping the Coclear after inserting the electrodes through it and therefore destroying said Cochlear) and what entailed in the operation. It would take place on a Tuesday morning, take about 3 hours and I’d be out by Wednesday. She showed me the three different types of CI’s that they offer made by three different companies (Cochlear, Advanced Bionics and Med-El – I hope I have these right!) and the differences between them such as the type of battery and the shape of the processor.
I asked her if she could tell me a bit more about why a CI works and would it work for my kind of hearing loss. She was so patient, I really appreciated the time she spent explaining what happens.
So, lets see if I can put it into words… The actual implant is what goes behind the ear, inserted under the skin during surgery. This is what receives the signals and sends them to the hearing nerves, bypassing the middle and inner ear and therefore anything that doesn’t work in there. The processor, sits on your ear like a normal hearing aid does and this connects to the implant. A magnet is used to keep the processor in it’s place. The fact that a CI completely bypasses the inner ear means that if you have a hearing loss due to a problem with your ear drum for example, a CI will not work. I found this incredibly interesting. If anyone reading this finds any inaccuracy with what I have said, then by all means please do say and I’ll edit. It’s quite hard to remember everything off the top of your head when there is so much other information you’re keen to keep hold of as well.
So, my widened vestibular aqueduct indeed does fall in the inner ear and therefore a CI would indeed work for me. The distortion that I get from my Left ear would not be present whilst using a CI as the hearing nerves that create the distortion (due to being damaged) would not be needed as they will also be bypassed. Big sigh of relief on my part.
I think it’s worth mentioning that I found it really interesting to hear that a CI does not always suit everybody with a hearing loss and can often suit people who have been deafened later on in life, or perhaps used a hearing aid, more than someone who has never experienced hearing any sounds at all since birth. This is because the CI uses the brain to interpret the hearing signals and if the brain has never received them before there can be a slim chance of it working as the brain will not know what to do with them. With children, it is generally advised to have the CI as early as possible, so that the brain can learn how to use the hearing signals it is receiving at the same time it is learning to do everything else naturally. It all does depend on the circumstances of the person involved though and I know this is taken into consideration on each individual’s merit. I know someone, very dear to me, who had a CI at the age of 50 after losing all her hearing at the age of 4 (if I have remembered correctly). That is some achievement and would have taken a HUGE amount of work on her part to train her brain into understanding sound as it will have been a long time sine her brain heard sound.
The Hearing Therapist continued to inform me that after the operation, some people find that their taste has changed, or perhaps a facial nerve is weakened but she assured me that these effects only last a couple of months at most. The big switch on, would take place about 4 weeks after the operation, the Tinnitus may get worse in the meantime, but should disappear or almost disappear as soon as the ear is in use again. She also told me that she would like me to meet someone who has recently had a CI, who is in a similar situation to myself hearing loss and lifestyle wise and to see how it worked out for them. I’m nervous about this as I’m not the most confident of people meeting strangers but I do agree it would be a really good experience to have.
So again, I left feeling incredibly positive and armed with information about the CI which is definitely A. Good. Thing.
A week later and I’ve returned to see the Hearing Specialist who fitted me with a new hearing aid. I won’t say much about this appointment as I pretty much covered it in my last blog post but she did explain a bit more about what they will be looking for.
Apparently there are a few areas of criteria that they will be looking at to determine whether a CI would be suitable for me or not at this point in time. The first is that my hearing loss is greater than 90 decibels and that I definitely fulfil. The second that I am aware of, is that I fall under 50% in testing for speech recognition without lipreading and in this test I got 42%. She explained that although they have to try every route before they decide whether to give me a CI or not, she doesn’t feel that there will be enough improvement with my new hearing aid to push me over that criteria boundary so her feelings were that I will be able to have one at this point in time. I will need to have a couple of specialist scans where they test my hearing with sensors on my head without me actually having to do anything (which sounds incredibly intriguing and I’m sure I’ll look quite funny!) and of course other factors are taken into consideration depending on my personal circumstances. But she did tell me that she will be pushing for me to have one sooner rather than later, I feel that perhaps I am being seen as an good candidate in that I would suit and use a CI really well. Here’s hoping.
The next appointment, later on this month will be a review with both the Hearing Specialist and the Hearing Therapist. After that I have my CT and MRI scans on the 2nd October 2009 which will provide valuable information to the consultant performing the operation. Time will tell if I’ll get one or not… I hope you’ll be waiting with me to find out!
Thanks for reading, more soon xx
6 Sep
The last appointment that I had at Selly Oak (next post will be about my appointments so far, the whole point in this blog… bear with me!) was to give me a new hearing aid. The idea at the moment, is that as my last hearing aid was ancient (which is anything over 5 years in hearing-aid-land) and coming up to the grand old age of about 7 years old it was high time I had a new one as it may or may not take me out of the criteria threshold for the CI in which case means that a CI can be “saved” for later and I’d tootle on with the new all singing and dancing hearing aid for the time being.
A lot of hearing people that I have met throughout my life have always been confused with the idea that I have been able to hear music (I used to play the clarinet and the piano for example) or hear an aeroplane go by. If I have told them I am deaf, they assume I cannot hear anything at all.
Yes that’s correct…
WITHOUT my hearing aid.
And I don’t go anywhere without it. It’s a perception that quite a few strangers, or people I meet for the first time that haven’t come across many deaf people before cannot get their head around and I do totally get why actually. Most understand straight away where I am coming from once I’ve explained.
So the idea of a hearing aid, is that it aids a deaf or hard of hearing person to pick up more sound than they would normally. It doesn’t make us hearing, and it doesn’t stop us from being deaf (as of course, the second the hearing aid comes out of the ear, we go back to complete silence again). A hearing aid means that sound is amplified to such a great heights that we can pick something up. Therefore we can play music on a stereo and hear noises to some extent. Vibrations also help us when identifying what sounds there are around and this also assists in what we can hear.
Amplification normally occurs when using a hearing aid but the amplification of sound doesn’t necessarily make everything clear by default, the sound is still artificial in a way and sometimes it’s very hard to differentiate between sounds in a noisy environment. Hence why lip-reading is still essential, and subtitles on the television are still a must. I can get by just about out and about without my hearing aid, but I much prefer having some sound to assist the lip-reading.
Another thing that a lot of people don’t understand until I explain is why some loud noises hurt my ears and make my eyes “wobble”. Surely if I am deaf, loud noises shouldn’t hurt my head more than a hearing person’s? I remember asking my Mum this question some years back and her answer made complete perfect sense. One of those moments when you think “Of COURSE! Doh!” Basically as most of you will know, sound is made of physical sound waves. These waves enter your ears and the louder the sound, the more waves your ears have to take. If you add a hearing aid on top of that, amplifying everything further, your ears are taking the normal sound waves (that my ears cannot process and hear) PLUS the extra waves on top. Ouch muchly! So there has it!
Hearing aids are not for every deaf person though, some don’t get on with them at all, some prefer the silence as the mumble and distortion that comes with hearing aids for lots of deaf people can be too hard to adapt to and some simply cannot find a hearing aid that is powerful enough. I have always worn them though, considering myself fortunate to be in a position where they can benefit me and would never be without one. That’s why, as I am struggling more and more to cope with just having only one ear now that a hearing aid can do something with, a CI is the route I am hoping to take.
I’ve become rather fond of my hearing aids over the years, they have been a lifeline for me. The very first hearing aids that I was fitted with when I was a mere 2.5 years old were in the form of two little white boxes, one for each ear and they sat in straps on my chest with leads up to the earmoulds that sat in my ears. My Mum used to make pockets to sew onto my dresses and sometimes even made the dresses herself so the boxes could sit nicely within my clothing, rather than wear straps. She used to choose dresses with large sleeves or collars so the straps didn’t rub against my neck. I didn’t wear these hearing aids for long though as when I was 3, along came the famous Phonic Ear, otherwise known as the Radio Aid.
The Radio Aids deserves capital letters, they were HUGE and to this day are rather infamous! A Radio Aid consisted of one big beige box that sat in place of where the two little white boxes used to be on your chest and boy was it heavy! The Radio Aid meant that key people in your life could then wear a microphone which was a suspicious long thin beige necklace type thing and it became all I ever knew Mum wear! The microphone had a long tail (which was the ariel) and “eyes” which were actually the chips. A chip identified the frequency between one Radio Aid and it’s microphone. If you were in an environment where there was more than one person with a Radio Aid, listening to separate people with microphones, you needed to make sure that you only heard “your” microphone and not someone else’s!
There were times of course, when several Radio Aid users would be listening to one person. In these cases rather than the speaker wear several microphones (now there’s a look!) all the Radio Aids could all have the same chip and bingo, we were all tuned into the same mike. This program was taken through right into the boxes that were compatibles with post aurals too – so in the 80’s they got it right sometimes! Nowadays, it’s all done by loop system.
Anyway, I mention post aurals, they were the BIG thing that came out of hearing aid development. Hearing aids that were powerful enough yet small enough to it behind one’s ear. Amazing! How the shoulders of all Deaf people across the land sighed in relief. Phew. Those Phonic Ears were big burdens to carry, and were awkward to put on and taken off too (especially on 3 year olds!).
I got my post aurals when I was 5 years old, the story of when I got them I mentioned in my first blog post. However since writing that post, I’ve learnt a lovely story in that my post aurals were actually rushed through so I had them in time to be a bridesmaid! How fab is that, I got to wear lovely discreet hearing aids and my lovely (peach, how so 80’s!) bridesmaid dress was shown in all it’s glory. I had no idea this happened until Mum told me the other day, I wonder if equivalent privileges are still awarded today? I hope so. Little things go a long way sometimes.
Along with the post aurals, came a new kind of Radio Aid that was optional and an accessory. The leads from the box which I wore on a belt (no pinafore for me!) had a “shoe” on the end, which clicked into the bottom of my hearing aid and was used at school in class or assembly. These “shoes” were fragile things. As I found out, they did not take to being stood on very well! I have many fond memories of primary school where my teacher would disappear from class for a few minutes, but often would forget to turn her microphone off. My hearing friends would gather around me with their ears pressed against mine and giggled along with me as we heard water flushing as said teacher had obviously nipped to the loo which unfortunately was still within radio range! Oh dear.
The post aurals were analogue, back in the day. I remember they were very basic but did the job. Although most people have gone digital now, many Deaf people are still loyal to the beauty of analogue. It still amazes me now though, just how advanced technology can get. For years I used to walk to town in the rain, with my hearing aid in my pocket as water and hearing aids did not mix. The hearing aid that I’ve just been given is waterproof, whoo hoo! It’s not built to withstand water to the depths that I could go swimming with it (awww) but at least getting caught out in the rain no longer is a worry. They also come in all kinds of colours now, how exciting is that! For years and years, they were always a boring beige colour, although some people were lucky and had the choice between beige and dark brown. A memory that my Mum recently reminded me of, is that the Radio Aid for the post aurals I had in primary school came in brown at first (no surprises there) but I didn’t mind as it matched my Brownie uniform… until I started at Guides when I was 10… so imagine my delight when I heard that there was a new colour out? Yes! You guessed it… Blue!!
The earmoulds were next, we could get red or green or blue earmoulds and I imagine they were brilliant for little children, creating a novelty when persuading them to wear these new awkward things. But I was never that bothered, until the glittery ones came out! And now, you can get digital hearing aids in all kinds of colours. If I get to the point of choosing the CI I want, I will also get to choose the colour too, shall I go for purple? Pink? Perhaps they come in transparent… now that would be interesting!
My hearing aids have had their fair share of trials over the years, belonging to me has never been an easy ride poor things. There was the time when I dropped one down the toilet, the hearing aid repairer at school was not impressed with having to handle that one when I explained what had happened to it. There have been near misses with sand, water (a plenty) and once I had children, for some reason hearing aids have equal appeal if not more to glasses for those little baby hands… luckily they’re very robust things.
So I finally get to the stage where I explain about my last appointment at Selly Oak, (well done for getting this far) where I was given a new hearing aid. The last one has been broken for over a year and a half and unfortunately my local audiology department had never been able to find a suitable replacement (that’s a whole new story for another blog post, maybe). My last hearing aid was the first digital aid that I ever had, it was amazing, I adored it. Digital is the way to go in my honest opinion, it was programmed specifically to the type of hearing loss I have and so emphasised on high frequencies (that I can hear less of) and not so much on low frequencies (which I hear more of). It was able to pick out what I needed to hear more of in a noisy environment, so in a pub for example, I could hear more of the voices closer to me rather than the general hubbub.
But alas, they don’t make that make of hearing aid anymore. There are bigger and better hearing aids now and I was well overdue an upgrade. Problem is, I’m a hard lady to get it right for. I had an appointment with a lovely lady who I felt at ease with straight away. She obviously knew what she was doing, she was obviously a very experienced Hearing Specialist. I liked her immediately and this is always a good start. She was well prepared, explained everything before we started and I walked away feeling very positive.
The hearing aid she gave me needed a bit of tweaking whilst I was there, and I’ve got to give it a try for 3 weeks. It is going to sound different, my head needs to learn how to adjust to the sounds that this aid is now able to provide for me that I couldn’t hear before. It’s also LOUD without hurting my hears which is fantastic, I can hear things I couldn’t before. I am finding it very hard to get used to it though. At the time of writing this, it has been 5 days and I am still struggling in noisy environments. I went to Asda earlier and I couldn’t make out what the cashier was saying as everything was loud and completely drowned out her voice so I had to rely on lipreading only. The increase in volume is wonderful, although it means that my head has been overloaded with constant sounds which has taken some getting used to. Whereas before, my living room once the girls were in bed was completely quiet, (ahh, peace) I can now make out a contant whooshing whirring sound which I’ve been informed is the digital television box and quite frankly, it’s getting on my nerves!
To the outside person, the increase in volume may sound just the thing I needed, but there is a lot more to that when finding a new hearing aid to suit you. With this one, the quality of sound is very important as well as the quantity. I can’t remember if I’ve explained why I only wear a hearing aid in one ear despite having a profound loss in both – quality not quantity is exactly the case there too. With the new hearing aid, everyone sounds nasal, like they have a cold. There is also a “ssss” sound on the end of everything which is driving me mad. And of course there’s still the problem of picking out sounds to focus on in noisy environments. I will be relaying all these concerns back when I go back in a couple of weeks. It could be that the hearing aid just isn’t going to improve things enough or it could be that some frequencies still need to be altered, or perhaps by the time the appointment comes round, I’ll have got used to it and my brain has learnt how to handle all these extra sounds I can hear.
Ultimately though, no matter how good the hearing aid is in my right ear, I still want a CI in my left. I long for hearing in both ears again and the hearing I do get from my Right with the help of a hearing aid, even a fabby one really isn’t good enough for me to cope like I used to anymore. I have never had a problem with the fact I am deaf, if anything I love the Deaf community it means I am a part of, I have always maintained that being Deaf is a way of life not a downside. But if there is any way that life can be made easier for me, then I’m going to take it.
Before I go, here’s a few photographs to share. The first is of me aged 3, with the very first hearing aids that I had and Mum will correct me if I’m wrong, but I think it’s a dress she made so the pockets for the aids were part of the dress. Wasn’t she fab?
The second is one of my treasured memories. Monkey had a hearing aid too. Well why not? It’s important to make hearing aids normal after all:
And look at the size of that Radio Aid!
Apologies for quality of photos. I’ll scan the originals one day and post them instead, photos of photos (especially ones already in an album) are never going to be sharp.
Credit goes to my Mum the WONDERFUL Carolyn Stevens who has helped me polish up my dates, provided me with the photos and generally for just being fabby :o)
Next blog post, hopefully will fill you in on the other CI appointments I’ve had so far. Watch this space!
3 Sep
Have decided to focus on my thoughts on what it’s like being a Deaf mum this morning. I’ve only been a Mum for 3.5 years but I can remember being pregnant with the Big One and worrying already how it would work out.
I had an easy pregnancy with the Big One fortunately. I enjoyed the scans and the MW appointments, it was all a huge novelty and I could not wait to meet my baby. I was lucky to have some understanding Midwives, who jacked up the volume on the doppler when listening for baby’s heartbeat so I had better chance of hearing it. However I remember in my first scan, the sonographer didn’t want my Mum, who had attended also for added communication support, to stand behind her whilst she worked. This wasn’t easy, I had to explain that as it was a dark room (which scan rooms always are) it’d be difficult for me to understand her and I didn’t want to miss anything. The best position for Mum to be in, as my husband was to my left, was to stand behind her. The sonographer wasn’t happy, but we compromised on a spot where Mum would stand and she repeated the information to me. I did feel I missed a couple of bits though, it’s hard to look at the screen where they’re pointing, and look at a face to lipread when they’re talking and pointing at the same time. I was very pleased when in my second pregnancy, a sonographer kindly understood and gave me the chance to check the screen before talking to tell me what she was pointing at so I felt I got a lot more of the experience every mother should have that time. It is the little things that matter in my opinion. A little bit of awareness, can go a very long way.
My first experience of being a Deaf Mum wasn’t the happiest unfortunately. My daughter was born at a minute to six in the evening and by the time I was taken up to the ward, it was 11pm and my husband had been sent home. I was taken to a ward which was dark, and three other mum’s were asleep in their beds with their new babies sleeping soundly next to them. I was told that if I needed a Midwife, to press the button but in actual fact I needed someone with me there and then onwards. The timings were unfortunate, baby was still asleep after her ordeal of being born, I had no idea when she would wake up but I had been awake for nearly 40 hours by this point, giving birth in the meantime so I was absolutely shattered to the core. Also in the haze that comes with having a new baby, I really felt very alone. I was scared to sleep. What if baby woke and I didn’t hear her? Her first experience of being in the big wide world wouldn’t be a happy one if she woke and no one was there for her would it? What if she then went to wake all the other mums and babies in the ward while I carried on sleeping soundly? Everyone would think I was neglectful. The Midwives assured me they’d come and tell me if she woke, but I was in a room down the end of the corridor! How would they know and how long would it take? So I didn’t sleep, and I didn’t sleep the second night either. It was absolute torture staying awake for effectively four days with only snippets of sleep so I could not wait to go home.
I was talking to my daughter, who is three and a half years old now, in bed the other night as she was having her bed time story.
“What’s that noise Mummy?” she asked suddenly.
“I don’t know darling, Mummy’s ears don’t work remember” I had to reply.
“I think it’s a lorry beeping” she declared, with a nod of satisfaction and settled down to continue her story.
“Oh blimey, you’re my ears already” I whispered, thinking I was out of earshot.
“No I’m not your ears!” she laughed back at me with a look that told me I was being silly. “I’m Alice!”.
Little does she know what’s in store for her in the future.
I have a monitor that flashes when there’s a sound in the girls’ room. It’s great, means I can rest knowing that they’re ok when I’m in on my own if my husband is out. Although a flashing light has it’s disadvantages. The light goes off when there’s a sound, whether it be a noisy car outside, a cough, or a book falling from the shelf, but obviously I have to investigate every flash. There was one evening when the Big One was about 18 months and the light kept flashing every 10 minutes. I wasn’t impressed, she was fine, still sound asleep. What on earth was going on? I went into her room, I shut the window and the door. I checked she wasn’t snoring (hand on chest can usually help feel vibrations of a mini snore) and listened hard. My hearing aid is good to an extent in helping me hear sounds, but there are still many things that I don’t hear. In this case, as my husband discovered when he got home to a very frustrated and highly strung wife, was that a toy was singing Twinkle Twinkle little star on repeat. I hadn’t heard it as it’s a very highly pitched tune on this particular toy, but happened to be right next to the monitor. I hadn’t switched the monitor off as I didn’t want to risk a repeat performance of baby screaming or me and me not hearing so had endured the trip up the stairs, every ten minutes. Oh how I cried with giggles, you could only laugh at a situation like that. But I couldn’t help feeling a tiny bit resentful that if I had hearing, I’d have found the rude toy, switched it off and then perhaps have caught the end of Holby City rather than catching up on digital spy!
I will never forget the time when Alice asked me where her friend’s mum’s hearing aid was. She was rather perplexed to discover that she didn’t have one.
“But my Mummy has one” she exclaimed in confusion.
“Yes but my ears work, so I don’t need one” my friend explained.
“Daddy’s ears work” She said simply.
I get the feeling that only Mummies were Deaf at that point in Alice world.
I have been told, that a CI can help with location of sounds which appeals to me tremendously. At the moment if the Big One is upstairs, I can’t hear where she is. There have been frantic searches on my behalf in the past when I’ve discovered that she wasn’t upstairs, nor downstairs…well she’s got to be somewhere. Where can she be? About to search outside in desperation, petrified that she’d somehow unlocked the door, made it onto the road and run herself over I finally notice that the blanket in the nook of her bedroom is twitching.
“I was playing hide and seek Mummy, I was calling you but you couldn’t find me” she said.
Sigh.
I’ve been told that people with a CI have come back and said hey can actually now tell where they are upstairs, not just that they are upstairs. This to me, is amazing. A baby crying and laughing can sometimes sound the same if you’re in another room. Someone told me that a CI can help differentiate between the two. Wow. I know it may not be the same for me, but it’s enough information to have me sold.
I do sometimes think I’m not good enough for my girls. I don’t take them to mum and baby clubs after a bad experience. I took the Big One when she was about 20 months old, to a “Stay and Play” session where you could take the children to play with others, and the mums could watch and chat to each other. The Health Visitor who came to greet me as I arrived was lovely, but unfortunately she ended up scaring the other mums away from me. She said to me that she’d let them know I was deaf and had to face me to talk to me, etc. Only in actual fact it stopped them from talking to me the entire time. It had been a long time since I had felt like such a lemon stood there next to a group of mums who had no inclination to talk to me, or make any effort and talked amongst themselves. I never went back. It worries me about the future, school gate politics and the like but I’ll take it in my stride. My girls won’t go without again if I can help it.
My two children are my absolute world to me. I will always put them first. In my head I sometimes struggle with the idea that they may become mini interpreters to me when I get older, I hated having to rely on my little sister when I was younger, it took some of my independence away. The little things add up. You know how sometimes when you’re in the supermarket, the cashier will talk to you? I normally avoid eye contact and have a standard set of questions in my head that I know they could ask so I can answer easily being prepared for certain lip patterns coming my way; “Would you like any help packing?” or “Do you have a bag for life with you?” being prime examples. But on the odd occasion I am thrown by an extra friendly cashier asking me how my day was. Once, I believe I was asked “What have you been up to today?” and as I didn’t catch her the first time (not realising she had said something) and then again the second time (she looked away to grab my next item) and a third time, as I just couldn’t get past her accent, it starts to get a bit silly. “It’s not important” she said, as she dismissed the question away with a flap of her hand leaving me feeling utterly stupid and left out on a limb.
I do explain to my children that Mummy’s ears don’t work, but she’s still young and is still getting the hang of it. I don’t want my children to see me in that embarrassing situation where I wish the ground would swallow me up, nor have to get involved when she’s old enough. Whereas I know that a CI won’t make me hearing, it should make things a darn sight better.
2 Sep
Well, here I am writing the first post on my new blog “The Deaf One”. I chose this title for the blog because for me, it’s often who I am. I am surrounded by hearing people when at home, or at work and it’s a label that I feel is often printed onto my forehead in big red letters. I hate being “The Deaf One”. I have got used to it over the years, but it’s starting to take it’s toll now.
A bit of history. I was diagnosed at 2 years old and issued with my first hearing aids at 2.5. My first hearing aids were these two little white boxes that sat in a strap on my chest and had leads that led up to my ears. Incredibly 80’s looking! A few years later I was issued with a huge phonic ear. It was huge! It was one big box that again sat on my chest with leads up to the earmoulds that uncomfortably sat in my ears. My mum has often told of stories where she’d buy different straps to match my dresses and of a longing for me to wear dungarees but alas were impossible, as it made going to the toilet difficult with a big box on my chest to manoeuvre out of! I must ask Mum for more stories, I’m sure it’d make great reading if I shared them on here.
I was 5 when I had my first post aurals (behind the ear hearing aid) which is what people know of Deaf people using today. I remember being issued them, and it being a big deal to everybody but me! I have some memories of my Mum coming into school especially, with the teacher of the deaf and my reception class teacher, and them all waiting for my reaction to having the big box on my chest, literally lifted off my shoulders. And the memory of this event that I hold is the suggestion that one of the grown ups made, to go to the bathroom, have a walk on my own and see what I thought. I remember washing my hands looking down at my new shiny shoes and thinking “I should have had the red ones”. I completely forgot that I had a new hearing aid. It amazes me just how quickly I adapted.
Anyway, during mainstream schooling I used my post aurals and they were sound. I got by ok, I had a lovely teachers of the deaf who helped me through. The teacher would wear a microphone and I got through a million hearing aid batteries! I was very much “The Deaf One” at school. There were a couple of other deaf children in the same school, but they were a couple of years away. I was often the favourite, and got to choose other children to do some baking with me, on a Tuesday afternoon. I got to go with the Deaf Unit to the fish shop, and buy two fish which I then had the privilege of stealing away from class to look after. I had somewhere to go first thing in the morning, while everyone else was answering to registration, to get my hearing aids checked. I was very much looked after, I have many fond memories of the care I received.
Unfortunately I was bullied though. It was harsh to be shouted names at by the other children and then laughed at when I said “Pardon?”. They thought it was hilarious. I remember catching “You deaf bat” once, it tore me to shreds. I didn’t want to be referred to as a rat with wings, totally oblivious to the real meaning of which I understand today.
I’ll probably add memories to the blog as and when I remember them. It may well be a good way of me looking back at my experiences, so watch this space!
When I turned 11 and was due to enter secondary education, I sat an exam which was to get me into a Deaf School. I remember spending the entire summer of 1993 preparing and getting ready, all very Mallory Towers-esque! I watced Mum sew name tags onto every sock, tee-shirt and towel, buy suitcases, new shoes and hairbrush. I chose which Jason Donovan and Tatty Bear posters I was going to put up on my board. I had a “Going Away Party” with my sister who was “Staying at Home”, and all my friends and family came to send me off. Finally on the 7th September 1993 my parents drove me down to Newbury where I started at Mary Hare Grammar School for the Deaf.
I loved it at boarding school. Everyone else was the same as me, everyone else had the same disability and so we were all in the same boat. The teachers were trained, we were in small classes, wore headphones and had our audiolgical needs catered for at the drop of a hat. It wasn’t all easy, I missed home hugely but I maintain to this day that it was the best thing for me. I made friends who are still solid 10 years after leaving, I got very good GCSEs and the A Levels required to get into University. I found independence, established my Deaf identity and left 7 years later a confident 18 year old with potential.
University was hard. I wasn’t very well prepared for the hearing world – the only downside to a Deaf school. I struggled to make friends and it was probably the first time in my life where I started to really feel the effects of being “The Deaf One”. I stuck out like a sore thumb in lectures, always having to sit at the front, with my eccentric (but lovely) note-takers while the cool dudes sat at the back, passing notes and hiding their hangovers. Nights out at the student union, were tarnished with the fact I couldn’t follow what anybody was saying in the dark noisy clubs. I felt that people had little patience and understanding with me, my enthusiasm for studying was weak as I couldn’t enjoy the lectures. I chose lectures that were squashed together on 3 days, so I could have long weekends at home with my boyfriend. I found it even harder when just before I started my second year, I had a severe Vertigo attack, and lost all clarity of hearing in my Left ear. I was forced to get used to using my Right ear only, the hearing that I had, useable by hearing aid was effectively halved.
I was so glad to leave 3 years later, although I am sad now, that I consider it to be a low point in my education as it should have been an amazing time. I did spend 3 years living in London though, that was a pretty good experience to have.
I graduated with a 2:2 in BA Education in July 2003. I had worked hard, I did do my best but due to lack of information and support from tutors in choosing the subject of my degree, I don’t feel I suited the course and I got bored easily unable to follow class discussions and group projects so I actually consider that I just scraped through. I got a job quite easily following graduation though, the fact that I was able to apply for a council post under the “Two Ticks” policy meant I was guaranteed an interview and luckily my interviewers were simply ace. I enjoyed a happy 2 years in that office, until my contract ran out and I moved on. I have always worked, enjoying the office atmosphere. Answering the phone has always been my sore point, in that it just simply isn’t something I can do easily, and luckily my current office "turn a blind eye” to the fact I just don’t do the telephone. I’ve always worked with the general public, don’t ask me why – it’s one of the hardest things you can do as a Deaf Worker! But the wonderful invention of pen and paper, common sense and generally growing hard skin, has meant it’s been challenging but definitely doable.
Fast forward to 2009 and my second child is born and I find that I am struggling more and more with understanding and following conversation, understanding bus drivers, shop workers and the doctor’s receptionist. It’s almost like, there’s so much going on in my head now, that I cannot physically pour as much concentration into understanding what is being said. My three year old daughter talks really well, but it’s tiresome having to get her to understand that she needs to look at Mummy when she talks to me, and she doesn’t like having to repeat to Mummy five times that she wants a drink. It’s knocked my confidence as a Mum, that if I forget to switch the monitor on just once, my 7 month old daughter has to wait longer than if she had a Hearing Mum for Mummy to come and pick her up after she’s woken from a nap. I’ll never forget the feeling, when my oldest was little, falling asleep after my husband had left for work, unintentionally and waking some hour later and seeing in the cot next to me a screaming baby that had woken god only knows how long ago, unbeknown to me. A mother’s guilt is quite something to contend with once you have children, but if you find that they suffer a little bit as a result of you not hearing something, it imbeds that guilt just a little bit more.
I decided to take the steps to look into a Cochlear Implant shortly after having my youngest, in January 2009 as I just am not coping as well anymore. It has got to the extent where I am just tired of struggling. The GP referred me to my local ENT who agreed to refer me to Birmingham’s Selly Oak Hearing and Rehabilitation Clinic. I have had several appointments so far, which I will blog about next time. So far so good, and I am feeling really positive about the future.
Here, I will write my thoughts on the CI process, and share with you experiences that I’ve had, memories that have sprung back up to the front of my mind as a result of thinking more about my life as a Deaf person.
Welcome to my Blog x