‘The Reality of Cochlear Implants’ by (Confessions of) a Deafblind Mother

Reality vs perceptions

Reality vs perceptions

SJ passed on a link to a very insightful blog, to our Facebook group and we liked it so much, that we think it deserves to be shared with everyone else.

The writer in this blog has remained very realistic about cochlear implants, which is very close to our readers’ experiences also.

It is somewhat dejecting to realise that the media has not been able to grasp the whole truth concerning CI’s – they give the impression that we will be able to hear perfectly well, almost instantly upon activation whereas that is not the case for most, if not all, of those who were inplanted.

Please visit ‘Confessions of a Deafblind Mother’ to read her very interesting article, ‘The Reality of Cochlear Implants’.

http://www.deafblindconfessions.com/blog/the-reality-of-cochlear-implants

🙂

Thank you.

‘Ending My Hearing Loss Isolation’ by Stu Nunnery

Here is yet another extract from another very interesting blog by Stu Nunnery, via the awesome ‘HearingLikeMe.com‘ site, sharing here for those who have had or are experiencing hearing loss…

“There wasn’t a good reason for me to hide and remain closed off socially or depend solely on my good hearing friends for their understanding and a social life anymore. My hearing loss isolation was a decision on my part, born of many things, but a decision nonetheless. Loneliness and isolation are not new issues for those of us with hearing loss and my story is hardly unique. Still many of us wonder how to connect our lives, work and souls to others with hearing loss given our common challenges.

As I discovered, there are ever more opportunities to engage with others with hearing loss and in activities customized for us here, there and everywhere. The chances are now greater to meet new people with similar and diverse backgrounds, skills and interests to enjoy a conversation, go out to dinner, travel, see a show, or take a walk without feeling the need to explain ourselves. Above all, we want to laugh, love and enjoy life like everyone else. Email, texting and Twitter have been a godsend for us for sure, but nothing beats a real face, a voice and a soulful connection.”

We would recommend that you read Stu’s full blog, via this link:

http://www.hearinglikeme.com/ending-my-hearing-loss-isolation/

Enjoy, once more.

We certainly did 🙂

What does it feel like when you remove your Hearing Aid or CI? by Jamie Danjoux

Good Evening all!

It’s been a great week so far and no more problems (yet) in public places with me not hearing other people etc…

So this evening I was having a shower as usual, and removed my hearing aids, normal so far.  However when I was finished and dried myself out and went downstairs, I had forgotten to pick my hearing aids up and put them in.

During the time that I couldn’t be bothered to go upstairs and fetch them, I made deal with being profoundly deaf – I couldn’t hear anything at all!! After about 20 minutes I started hearing these fuzzy horrible noises and it was probably my brain, I was also feeling kind of drowsy and getting headaches.

intense-headache2

So I went back upstairs and got my hearing aids and a glass of water – the annoying noises and headaches soon died away.  I was thinking to myself whether not having my hearing aids in for a long period of time stresses the brain so much that it can’t cope!  Is this normal?

I actually can’t imagine what it would feel like if you couldn’t hear a thing at all it must be so horrible! It feels so isolating for me not being able to hear.  Obviously going in the shower for 5 minutes is different because you can hear the shower running and able to feel it.

I’m actually extremely grateful that I can hear and 2 amazing life saving gadgets can actually radically improve your life!

So does anyone else experience bizarre symptoms when they don’t have their HA’s or CI (‘s)?

‘Til next time!

Jamie

Computer Says No By Rosie Malezer

Rosie Conan

Rosie Malezer

I am a Deaf Australian Aboriginal living in Finland (I am now also a Finnish citizen). On 23.11.2014, I lost my hearing – LITERALLY overnight. I woke up, could hear nothing. My husband spoke and I saw his mouth move, but I heard nothing. I could not hear my cats, the wind blowing outside, the television, my telephone, my alarm to wake me. Not a thing, except for a ringing in my ears. My left ear has louder higher pitched ringing than right ear. Over the past five months, I have been passed back and forth from specialist to specialist, doing many tests (some quite painful) to try and determine what is going on. The Audiologist at TAYS (Tampere Hospital in Finland) advised in November that a Cochlear Implant would not only help me to hear again, but would also remove the ringing in my ears. At all visits, I had my husband and Mother-in-Law with me so that there would be no misunderstandings due to communication. Many hearing tests later, all saying the same thing (I cannot hear, not even through the bone behind my ear) led to diagnosis that I am profoundly Deaf.

Each visit to each specialist, each test, each social worker cost us around 32€ and with well over 10 visits in a five month period, it quickly adds up. The cost was crippling, especially since my Unemployment Benefit was cut immediately on my diagnosis of Deafness and I was instead placed on Sickness Benefit until the hospital could determine what is wrong with my ears. Why can’t I hear? What caused my Deafness? So now, we are buried in hospital bills, but life was made a tiny bit easier when the hospital supplied me with a communication device that enabled me to have a TWO WAY conversation without needing pen and paper. I was also provided with flashing lights in my home to tell me when the doorbell rings. It made things a little bit easier.

After all the tests and the confirmation that I would be receiving a Cochlear Implant in March 2015, I was at peace with the fact that I may never hear again. Being Deaf no longer scares me because I had a support network. I had even let myself be open to the fact that doctors will cut open my head, put a device inside, drill into my skull, thread wires into my cochlear and my brain while hopefully not damaging the nerve that controls my facial muscles. I was ready. And then I receive a letter saying they want me to do one more test. Regardless of how painful it might be, I said okay. I wanted to hear again. I miss my husband’s voice. I miss talking to my family on the phone who live in Australia.

On 11.3.2015, I was led into a small room and electrodes attached to my head. I was then told close my eyes. This is never a good request as I suffer from Agoraphobia with Panic Disorder (since 1996) and panic attacks sneak up on me. But in the past five months, I have found a way to keep them at bay without being unconscious. I have been taking ASL Sign Language lessons relentlessly with a great teacher and have been progressing well with my exams. I decided that I will keep my eyes closed in this final test, but instead of sitting in darkness and letting it take over me in the form of a panic attack, I would sign as much as I could remember without having my papers in front of me with the words. I got through the two hour test (barely) and was quite proud of myself with the amount of words I could sign, as well as the fact that I did not have a panic attack.

The next place we had to be was the Audiologist’s office. She at first refused to use the communication device. Not so professional. Then she used it and typed so badly that I could barely understand what she was saying. Then when she realised that her “mistakes” were crippling a medical appointment that I was again paying for, she suddenly remembered how to spell. She said that the electrodes connected to a computer which showed that my ears were healthy. They reacted to noise which was played through headphones during that 2 hours. Noise I swear on the life of everybody I love that I did not hear. Not a single thing was heard. I told her this and she said I can hear. My husband sat beside her, becoming as angry as I felt, that a so-called medical professional was not hearing MY words. I have not been able to hear a thing except for ringing since 23.11.2014. She shrugged and said “You can hear. The computer told me so.” She then went on to tell me I am obviously crazy and need to see a psychiatrist. I was so hurt, offended, angry, disgusted that I got up and walked out. My husband followed.

I cried my eyes out from the chair in her office all the way to the car, and to home. I had already figured out that DEAF means USELESS to Finland – a country that portrays itself to the world as a leader in Deafness. I guess this is the equivalent of Australia trying to show itself as a leader in human rights. Both of these things are now completely laughable. A total sham. Until you see the world as Hearing and then are forced to see the world as Deaf (a change that happens overnight), you cannot possibly conceive how significantly different you are treated, all of the rights you lose, how you go from being a valuable member of society to being a waste of space.

To add insult to injury, the assistive devices that I have relied on have been demanded back. They are to be returned IMMEDIATELY to the hospital. So now I go back to being Deaf without any help. Back to being able to only communicating with my husband and nobody else. Back to not knowing if the postman has brought a parcel to the door. Back to not knowing if Poliisi or Fire department are knocking because an emergency has happened. I am back to being truly alone.

I love Finland and I love Australia. Don’t get me wrong. I am an Australian Aboriginal who has witnessed horrors within Australia that the media never dare talk about. I am a Finnish citizen who spent five years learning the hardest language on Earth so that I could comfortably live in the most beautiful country on Earth.

UPDATE: Human Rights groups are now investigating the said Audiologist, and it turns out she is a repeat offender. She treats Deaf as non-people. She did end up removing all of my assistive devices, after which an emergency meeting was held between the hospital, my family and a Deaf social worker. The hospital admitted there were big problems with her and assured me that Deafies do matter in Finland. I am starting to believe that the Audiologist is on borrowed time in her job, which gives me some restored faith in humanity. As a newly Deaf woman, I have support networks in Finland, for which I am so grateful.

I actually said this out loud to myself when I was doing the dishes, right after Finland Deaf Association contacted me and said they will help me. I was so glad I made a noise about what happened.

 

~ Rosie Malezer.

Hearing Hands.

Once upon a time, Muharrem, who has a degree of hearing loss went about his daily routine as usual. Except, he was then pleasantly surprised to see strangers all around him using sign language, which made his day pass by easier.

When he finds out why and how, his reaction is priceless and most likely this heart-warming stunt will make you shed a tear or two, also.

All because a world without barriers is everyone’s dream.

This ad was made by Samsung, Turkey in order to promote their video call centre – for people with hearing problems.

The Deaf Community – An Important Message.

Many years ago, deaf people were not considered to be in a position where they could be a proactive member of society. For at times, families would hide their deaf child away because they felt ashamed simply because they had a child who happened to be deaf or even worse, were not diagnosed as deaf but for want of a better word, dumb. Some of these people were mistreated, abandoned and abused.

Looking around us today, it is a completely different picture. It is not yet perfect but the deaf now have a community which has come a long way and I am using the word “community” and not “culture” because the word “culture” is rather complex and divisive. When one uses the word “culture”, it is in reference to customs, habits, language and many other factors that belong to a particular group of people who are different to others.

Sign language alone should not form the basis for a “deaf culture” because deaf people are born into a culture that already exists – if you are born into the British culture then by default you are British. Bearing in mind, that sign language is derived and based on our mother tongue. Both deaf and hearing people as well as monkeys and apes can use this form of visual language. On the other hand, it would be wrong of us to assume anyone who may be hard of hearing, deafened, deaf or deafblind automatically know sign language. To presume that everyone deaf can sign is not correct and it is misinforming our society of today.

A baby who has been born deaf into a British hearing family, growing up with the family’s customs and ways, can he suddenly deny his family’s culture and refer to himself as deaf only? Insinuating, that because his family is hearing, they do not belong to a “deaf culture” despite having tried their very best to provide their child with an enriching and balanced upbringing, encouraging him to speak, sign and integrate with his peers regardless of whether they were deaf or hearing.

It would be extremely hard for me to separate myself from the people that taught me everything I know and in the process hurting them in return by secluding myself to another particular culture, especially one that we find difficult to define.

To put it simply, we have habits (no, not those long brown gowns!) which is interpreted by some as “deaf culture”, or more appropriately termed as learned behaviour. On the contrary, we can learn it, be aware of it but it does not mean we have to adopt it.

Sadly, there are deaf parents who hope their child will be born deaf because they believe they belong to a deaf culture only and by having a hearing child, they would break that familiarity to what they only know. This is an extreme stance to have and it is one that is potentially damaging.

By simply saying to hearing people “If you do not make the effort to communicate with me then I will separate myself from you all together” is so not the route to take; the more they see of you, the more they are forced to understand you. I say forced because hearing people have the option to learn at least some basic sign language like finger spelling which should at least be made part of today’s school curriculum.

One (i.e. Paddy Ladd and his Deafhood book) could argue that residential schools for the deaf is the main continuity for “deaf culture” being learned – perhaps forty years ago but not today. Because forty years or so ago, the differences in technology, segregation and concentration then and now could not be more evident unless influenced and taught otherwise by the older generations.

As stated on NDCS website, “90% of deaf children are born to hearing parents with little or no experience of deafness or knowledge of how to communicate with a deaf person”. The other 10% would probably grow up with sign language as their first language in cases where the deaf parents also sign rather than having to wait until they have contact with other deaf children, which is normally the experience of the other 90% at school. Approximately, nowadays, 90% of those deaf children born severely or profoundly deaf are likely to be implanted before their second birthday – More than 60% of the children at Mary Hare School now have implants.

Where hearing aids and implants are concerned, people have feared deaf identities and the linguistics will be lost, “I am still deaf” one may remark. Of course, you will still be deaf because your hearing aid(s) or implants will not be in use 24/7 and you will have grown up as a deaf person, lip-reading, signing (if able to). The deaf majority at present, thankfully, now sees a CI as a superior hearing aid, which actually has very little bearing on “deaf culture” despite a tiny percentage that are anti-CI and vehemently trying to turn people against CI’s by using an excuse along the lines of “social cleansing”.

There is a term albeit rarely used, which is the “hearing brain”. I understand this to mean when someone loses hearing later in life after growing up living life to the max as a hearing person possibly could, has been fortunate to receive a cochlear implant, only to characteristically revert to whom they grew up as. Do we or rather, should we put that down to “hearing culture”? When it is whom they have learnt and happen to be, within themselves and society just as we are who we are and that others have taught us who to become.

My fear of seeing people belonging to one culture and denying everything, everyone else around them is that there is a danger of separating ourselves from the mainstream culture we have to live in and share.

In being exclusive, this will undo all the hard work that has been achieved before us, by the many generations of deaf people. They are the ones who struggled and fought hard to finally be accepted within the mainstream society today. If anything, we should continue to strive albeit much harder to keep this sense of inclusion and integration developing but there is a cycle, especially where learnt behaviour is concerned, reoccurring in many senses that people need to break out of this habit, especially if they want to advance further as an inclusive and diverse community.

There is a still a lot that has to be done, in terms of educating society that we are all equals and just as capable but not by creating and realising any further divisive ideas. With positivity, forward thinking and unity, this can be achieved by the deaf community but only if the will is there.

~ SJ (Sara Jae)

How Would You Like To Be Called?

I had been anticipating my ENT appointment for months now and finally this day had arrived. But, what a day?!

To begin with, I had been a regular patient at my local audiology department but when we last phoned for another appointment – I was notified I had to be referred back to audiology by visiting my GP, to ask to be referred to ENT who would then put me back through to audiology. What a palaver but if I needed new ear moulds and hearing aids then so be it. I persevered.

Going through the broad spectrum of emotions and thoughts, as I decided I needed to be there at least twenty minutes early to claim a prime position, in the waiting room – close enough to scan lip movements for any names being called out. I had clarified with the receptionist if they would be calling out names, she confirmed this and that she would let them know I was hard of hearing. I explained that I was deaf to reinforce just how profound my hearing loss is. “Oh ok, same thing” she replied. I had to remain calm and took my seat albeit feeling rather surprised.

“Mumble Mumble” started off the processing by the nurses and trainee doctors. Feelings of dread were not appeased nor swayed when I noticed this LED display board to one side welcoming patients;

“Welcome to ENT you will be called through to see a member of the ENT team”

IMG_0966

My GP’s surgery has the same sort of contraption except they use it to announce patients’ names on it, for a certain designated room to be seen by Dr X or Y. So relatively I wondered why the ENT and Audiology departments despite being specialists, could not implement the same quality of service to be inclusive of all. Digital technology in this day and age has advanced greatly but not in our NHS hospitals it seems. This needs to change for the better, for their sake and ours. After all, they did ask how patients wanted to be called.

How would you like to be called?

How would you like to be called? On the screen in ENT.

A Tree House dweller informed us that he once had a placard with his name on it whilst waiting for his appointment, much to the other patients’ amusement at the time. Unfortunately that is how appalling services can get and this is what he felt he had resort to in order to be seen.

I was now sensing the other patients in the ENT waiting room were becoming restless, demanding to know when they would be next seen and this poor nurse was trying to appease them. By this time I had managed to pull myself together from feeling quite annoyed at being passed to audiology and then back again to ENT not knowing why or if I would be seen, if at all. If they were getting angry at being delayed by mere minutes, I thought to myself how should I be feeling only to be made to wait potentially a few months extra for my new ear moulds and hearing aids after waiting months already, especially in such an environment?! I decided I was not going to let them feed me any negativity and found some inner peace to remain patient.

Patience is a virtue.

Patience is a virtue.

From not the usual place names were being called out (the doors in the photo above) but further to the side – I just about saw my name, whilst glancing, being clearly spoken. My turn – Glee and amazement at catching that! I had the consultant this time around who was particularly interested in my family’s history of deafness – why they were deaf, how and if my children were “ok”. He then enquired how my hearing aids were. I mentioned I had had them for about ten years now and the last time audiology tried to provide me with a new pair they did not suit me so handed them back hence why I was now eager to try again as my current ones were starting to become slightly temperamental. I am also scared of being left stranded with nothing to hear with. He explained to me that any new pair of hearing aids is most likely not going to suit me based on my audiogram so he is ordering a head scan to find the biological cause of my deafness since my mother was born deaf – cause also unknown and my father became deaf through meningitis. He was especially interested in my mother’s deafness and if she could talk well. “Yes” I replied, “Just like I can”. The consultant then expressed. “I would like to put you down for a cochlear implant if the new hearing aids do not work for you”. Instantly emerged a brand new, never experienced before emotion and it is one I cannot find the words to describe.

As my consultant returned me to the audiology’s waiting room and found me a seat; I thanked him for his time. Suddenly I found myself dismayed, wondering why I was once again back in Audiology! Recurring feelings along the lines of, “Do they know I’m here / am I in their queue?” I scanned once again for any names being called out. Whilst scanning one caller, I had not noticed another came out to call but noticed she had gone into reception to make a query about this piece of paper in her hand. She came back out and said… My name – Glee once again! Phew, that was a close call I determined– I had missed that first time around because I only have one pair of eyes.

Ear moulds casts were made and she too concurred that the new hearing aids might not work very well for me due to the “different new sounds” they would make. But as anticipated I was going to have to wait at least two months more for another appointment to get and try out these new hearing aids. If only they had seen me when we first called as I was already a patient then, I would not have had to wait so many months more. She understood my frustration and said she would try to get something earlier.

A cochlear implant? Me?! I must admit though being an honest person, if I hadn’t written this article regarding cochlear implants I most probably would not have been as open to the idea. One thing I do know at this point in time is that I am not looking forwards to the realisation of being left with less than adequate hearing from prospective replacement hearing aids – my current ones have lasted me for so long and they will not always continue to serve me well. Remaining positive though that the new pair will work just the same or better and if not, perhaps the next steps are meant to be. I would very much prefer to have the same quality of sounds or better – not less. Just as you would expect a replacement PC of the same specifications or upgrade to better specs.

Does this mark the beginning of what could be the next stages in my journey? Only time will tell and more patience once again. Upon reflection, I realised that by asking patients to be referred through all over again it was giving the consultants a chance to catch those that may have filtered through first time around and a chance to produce a more updated yet better care?

Going back to the title of this article, “How would YOU like to be called?” Be the change you wish to see so start that ripple effect by being courageous and letting your GP’s surgeries, Audiology and especially the ENT departments know, just how THEY can be more inclusive and improve their services.

Carpe diem!

~ SJ (Sara Jae)

(Update: A few months after sending this to the hospital and relevant parties concerned, I returned to ENT to find their digital screen as photographed, displaying patient’s names as they were being called… Result!)