Looking Back

The worst thing about moving home is having to de-clutter. It’s incredible how much we hoard paperwork and silly little mementos.

Whilst sorting through the debris of old work payslips (I’m talking about over 10 years old!) and various other documents, I came across all my paperwork relating to my many, many hospital appointments and assessments for a CI. I smiled, thinking about my journey and how far I have come in little over 2 years.

And then I came across a letter I wrote to St George’s Hospital when I was first assessed for a CI, this is the hospital that first refused me an implant. Myself, my employer, my mother and my then fiancé each wrote a letter to the hospital outlining the effects that my hearing loss has had on all aspects of my life, asking them to consider me for a CI. I read the letter I had written and my heart broke remembering how little confidence I had in myself and how much of an impact it had on me and my relationships.

I thought I would share the letter with you all, not for my own gain, but so you can realise the impact that profound hearing loss has on people socially, professionally and mentally. I have blogged about the impacts of hearing loss before but I think this letter explains it in a way that you will be able to relate to. It’s incredibly honest, raw and full of emotion. I cried re-reading it, remembering all the major life changing events, birthdays and social events I missed out on and remembering how low I really was.

It’s so easy to forget about all the little things that made life incredibly hard and focus on the good things but I don’t want to forget that, it’s made me who I am today. They say “everything happens for a reason” and I think I truly understand that now. I wouldn’t be who I am now if I hadn’t gone through that period, it has made me appreciate the little things in life all the more.

The letter:

 Laura Dillon

XX XXXXXX XXXX

XXXXXXXXX

XXXXXXXXX

XXX XXX

 St George’s Cochlear Implant Programme

XXXXXXXXXXXXX XXXX

XX XXXXXXXX XXXXXXXX

XXXXXXXXX XXXX

XXXXXX

XXXX XXX                                                                                                                                             18th June 2014

 Dear Sir/Madam,

 Ref: Laura Dillon DOB XX/XX/XXXX

 I have been asked by the Cochlear Implant consultant at St Georges Hospital to note down my feelings about my current hearing and any points that I feel should have a bearing on the final decision reached regarding my eligibility for a Cochlear Implant.

Pre current hearing loss:

I was born with a significant hearing loss as a result of my mother having contracted Rubella whilst pregnant and I have worn hearing aids from the age of two. This hearing loss has never adversely affected me; I underwent extensive speech therapy at a young age and as a result have excellent communication skills. I was also taught to touch type whilst young which I have benefited from within the workplace.

I was never considered a deaf child and it largely went unnoticed by friends, class mates and colleagues alike. I attended mainstream primary and secondary schools and gained 10 GCSES and 3 A Levels as well as obtaining a Law Degree from Plymouth University.

Such was the benefit I was getting from wearing a hearing aid in my right ear; I made the decision at the age of (approximately) 13 to no longer wear a hearing aid in my left ear as I felt I was getting enough benefit without.

I interacted with friends and families ‘normally’ and sometimes even forgot myself that I had a hearing impairment.

I enjoyed travelling, watching live comedy shows, seeing live bands and socialising with my friends, typical twenty something behaviour.  I was a lively, independent and confident young woman.

Since leaving university I have worked at FACT, in an open plan office dealing mainly with administrative tasks and conversing with colleagues by telephone and other forms of verbal communication. The nature of our work is sensitive and therefore communication by telephone is the preferred method of communication, if not essential. My prior hearing loss never affected my ability to use the telephone.

Since the hearing loss:

The recent hearing loss has greatly impacted on my ability to carry out my day-to-day life as well as changing my personality. The hearing loss now means that I am unable to communicate via telephone and struggle to understand conversations, relying heavily on lip-reading which in crowded or loud environments is particularly hard. It is near impossible to lip read when there is no natural or artificial light so interacting at night is difficult. I wear glasses/contact lenses and obviously there are times when I am not wearing them (i.e. when I go to bed, wake up, have a shower etc) and this means that my ability to lip read is severely hindered which makes communicating with my fiancé hard during these times.

I can no longer enjoy music as I cannot distinguish words, I cannot watch films at the cinema, or go and see a comedy show which has left me with hugely low confidence, I feel dependant on the people around me which at 27 years of age, I shouldn’t be.

I now suffer with severe tinnitus in my right ear which also affects how much I am able to hear – the pitch changes all the time and sounds vary drastically but it is constant, from the moment I wake up to the moment I fall asleep, this affects my moods and often leaves me with headaches and means certain sounds hurt my ears. I find myself getting tired quickly as I am having to concentrate so hard when I am at work or in social environments that it drains me of energy.

It has affected my relationships within the workplace and with my peers as I do not go out as often as certain situations make me uneasy – I do not meet friends for a catch up at the pub because of the loud background noise or join in on large celebrations because I cannot follow conversations if more than two people are talking at once. This has meant that I have declined invitations for weddings, family birthdays and my best friend’s hen party as I cannot deal with crowds/large social gatherings.

Whilst my friends and family have been hugely supportive, I feel that if I keep declining invitations to social gatherings, my relationships with them will gradually disintegrate. The fact that I am unable to communicate by telephone has meant that I am unable to maintain certain relationships as my grandparents are unable to text; this has been a difficult process to come to terms with. My friendships and family relationships are important to me, and I do not want to lose them.

I feel useless in the workplace as I have had to hand over large parts of my role to other colleagues which I feel guilty about. I also feel my relationships with my colleagues have changed, I have noticed that I have withdrawn myself from colleagues and do not engage in conversations as much as previously. I used to feel proud of the job I did and in my ability to do it well, now I feel like a hindrance to the company. Before the recent hearing loss I was also considering furthering my career outside of the company which I do not feel I can do now as I feel I have nothing to offer a new organisation.

I also feel it has changed people’s perceptions of me – I see people talking slowly at me, loudly and with added emphasis, as if I cannot comprehend that they are talking to me, I feel frustrated by this as I am not stupid, I just cannot hear. I have also noticed that when I am with my fiancé or mum, people tend to talk directly to them instead of trying to engage me in the conversation. This obviously annoys me and means I get frustrated with the individual, perhaps even angry with them. I have also noticed that I am more emotional, especially in regards to the hearing loss.

As mentioned previously, my confidence is at an all time low. Before the hearing loss I wouldn’t think twice about going out on my own, but now I notice that I am hesitant to do things independently without support.  I constantly feel nervous or anxious about certain situations and have noticed that I have become stressed (I have noticed recently that my hair has been falling out in large clumps) which is something I never suffered with before.  I feel part of this is a safety aspect, I am aware that I cannot hear sounds like a ‘normal’ person which makes crossing the road or walking home at night dangerous and I worry that this could lead to an accident. I know that this is a concern that my family share.

Similarly, I am concerned that should something happen in the home, such as a fire, I would not be able to hear the fire alarm go off or if someone was to break into the flat, I would be unaware because I cannot hear, this is especially the case when I am asleep at night and not wearing my hearing aids. Should I need to contact the emergency services in these circumstances, I am unsure how I would be able to contact them (should I not be near specialist equipment) which is obviously of concern to me and my family.

I recently became engaged and whilst I am excited about planning our wedding, I am also apprehensive and frightened. I find I cannot get excited about certain aspects – like music – and have chosen not to get involved in this part. I also fear that I will not be able to hear my fiancé say his wedding vows and will miss out on a moment that I can never get back, or that I will constantly be asking the registrar to repeat themselves because I cannot hear them. I feel daunted at the prospect of interacting with our guests on the day which is not something I ever thought I would have to worry about on my wedding day.

Whilst I understand what the consultant has told us regarding my hearing test being borderline for my left ear, I cannot comprehend how this would balance out the fact that I can only hear 12% of words with both hearing aids in without lip-reading – in what situation can that be deemed acceptable? These hearing tests are conducted in an environment where outside noise is restricted (in a sound proof room) and where I have been warned to expect noises and listen out for them – this is not representative of any normal every day situation. If I can only understand 12% of words under these circumstances that surely would mean in normal environments I am able to understand drastically less. Why is it acceptable for a young woman who has a whole life ahead, to only be able to hear 12% of speech, to have their life drastically affected when there is a solution in the form of a Cochlear Implant?

I know that should I be deemed acceptable for a CI, it is a long process but I am young and bright and willing to do whatever it takes to ensure that I can become a fully functioning member of society again. I do not want to spend the rest of my life feeling like I am only half functioning, that I am missing out on everything life has to give because at 27 I should be independent and enjoying life.

Yours faithfully,

Laura Dillon

 

 

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6 thoughts on “Looking Back

  1. How often do we have to say that our hearing loss has a huge impact on our lives, the lives of our family and our friends. This reflects exactly my own experience, I had the same conversations with different consultants where I live in Wales and knew of no-one else who was going through what I was going through. Everyone on that team supported and helped me as much as they could but they were completely helpless against funding and guidelines which take no interest in the word ‘isolation’ in respect of hearing loss and the mental torture that more often than not you keep hidden because you don’t think anyone is interested.
    I was told that NICE are looking at this for adults as there is no measure at the moment for the social and economic consequences on those who are close to the line for cochlear implants. Like you my measure was just above that magic line but declined just three months later but the consequences of that meant I had another year’s wait. That after the previous 3 years waiting for appointments and referrals.
    I agree that children should have cochlear implants and their needs are great. However, adults who lose their hearing later in life have so many issues which are not considered important but actually hearing loss is not that bad really!!!! And as an adult, you shrivel inside every time you have to excuse your inadequacy because of your ‘minor’ disability.
    I feel now as if a miracle happens every day with my CI but am very aware that this is not because my disability has gone away but because now I can interact, I can hear what people are saying to me, it is possible to enjoy the company of others and I can see their pleasure too when they know I am hearing them.
    So lets start campaigning to get better support for adults who are close to that BKB line and extra evidence can be added to the physical hearing loss by weighting the social impact alongside.
    And I couldn’t agree more with you. All tests are done in a clinical environment and this in no way reflects what the hearing impaired have to battle against in normal everyday life.
    I am on a campaign here in Wales because agreed the waiting times are over double what they are in England so people here in Wales are getting worse treatment – not acceptable. And I am campaigning to ensure that adults have a process which reflects the social and emotional impacts of hearing loss in everyday life.
    Lets all keep up the pressure. Cochlear implants are life changing. What more evidence is needed?
    Jackie

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    1. So sorry for the delay in responding to your comment! I absolutely agree with you, we need to ensure that socia, mental and professional impacts are taken into consideration – it is of no use to just say “deal with it”, it can have an even greater impact on individuals health wise if left untreated and can lead to severe depression in adults. Children adapt and bounce back much quicker than adults can.

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      1. It always feels like you are being mean when you say that but children are adaptable which is why it is so important that they get their implant as early as possible. With adults you have to accept the waiting time. I spoke to someone yesterday who was on the original commissioning board for Birmingham many years ago when assessing for CI’s and she said it wasn’t a concern but she can understand now why it should be.

        We need to make some progress here. Any major contacts anywhere? I am presently working on the Welsh Health Commissioning Committee and have asked for documents under Freedom of Information but it is taking a long time. I am prepared to wait.

        Good to hear from you.

        Jackie

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