Back To UK

Here I was again back in the Nuffield ear nose and throat hospital to reapply for the cochlear implant, because by the time I had come again it had been over a year I was told I would have to go through all the testing again.  The first one was lip reading without sound and the second test was lip reading with sound and both my hearing aids on. I also did the words list test where the audiologist team would say words without me looking at them and I would have to repeat the words back followed by full sentences with different words that sounded the same but were in fact different. I again scored quite high on the lip reading but low on all the other tests, therefore I was told we could speak with the consultant and see what the next plan of action would be.

Once in the room with the consultant and his team I was told that based on all the results of the tests I was still just on the border line to be eligible but not quite there. The infections were too frequent and therefore the operation could not be done until the infections were under control. I remember going back to the place where I was staying and thinking, why?? How am I not deaf enough yet? how am I just on the border line? Why are these infections not clearing when I am doing everything possible to both prevent them and look after myself when I have them. you see, I know I spent months at a time with the infections and I did everything possible. I made sure to take my hearing aids off plenty to let the ears ventilate, I did not wear them when I was with infection and I constantly cleaned them.  I just couldn’t understand that I was struggling so much and having all sorts of difficulties and yet they thought I still was not ready for this operation. I just wanted a bit of normality back, a bit of life quality. work was so hard, especially once the pandemic hit. I just couldn’t communicate effectively with my co-workers, I was leaving every single shift with throbbing migraines and in tears once I got home. It was affecting my eyes as well because I was trying to concentrate extra hard all the time, but with masks that was impossible, I just could not communicate with them half the time. I felt very isolated during this period and even though I love my job, I got a massive depression and anxiety during this period. So much so that in October 2020 I had to go off sick with said depression and anxiety. I had to go on medication and sought out help from professionals as the me I knew was not there. I would cry over anything and everything and I was scared to death of going out.

November 2020 came and I received another appointment to visit the Cochlear Implant team in the UK, so again off I went to Nuffield hospital where I saw the consultants registrar, we sat down and discussed how things had been and if the infections had slowed down, which by now they had. Once I told him that yes they had calmed down slightly and he checked my ears, did some CT’S and MRI’S on the ear and saw how everything was. He decided to give me the news that I had so eagerly been awaiting, YESSSS to the implant surgery!!!. Finally I was eligible enough to have the surgery. I sat there crying at his words and was so excited to finally get this ball rolling. He told me he was happy with all the tests he had performed and that he would be in touch with me once back home in Gibraltar to arrange dates for the surgery and to send me 3 different types of cochlear implant devices so i could look at them and decide which one I wanted to go with. A few weeks later I got the phone call that the surgery had been arranged for January of 2021. and to ask if I had chosen a device so it could be ordered. I had chosen the Kanso 2, the Kanso 2 fitted into what I wanted from the device and to be honest it was also the smallest and closest in colour to my hair, plus I knew I didn’t want the behind the ears device as i knew the struggles id had with the hearing aids and the pain and uncomfortableness that came with it. I had 3 choices listen below :



THE RONDO 3 SOUND PROCESSOR
THE SONNET 2 AUDIO PROCESSOR
THE KANSO 2 SOUND PROCESSOR

But the journey was not yet to be and just before Christmas 2020 they cancelled my surgery due to COVID-19, they rescheduled to February but again this was cancelled. finally they called me to again book the surgery for APRIL 2020 and here the real journey begins…….

First steps towards getting the cochlear implant.

After some research, talks with family and friends I knew I wanted to start the process to get the cochlear implant. I made an appointment with my E.N.T doctor at my local hospital and he knew my history quite well as we had spent alot of time together in the past due to my recurring ear infection. These infections would drag on sometimes for months at a time which caused me to be on antibiotics quite often to the point my body had now become immune to them.

In 2018 alone I spent more than 10 months of that year on constant antibiotic changes, as often as every single week we were trying a new one to see if that one would make a difference and finally make the infection dissapear. In one of those frustrating appointments with him I was in tears from the pain and frustration of yet still having the infection, going through another suction procedure to remove the puss I finally said to him I could not take this anymore. That I had finally hit that place where I was beyond tired of not only not hearing and struggling with everyday life but also of these infections. So I told him about my research about the cochlear implant and asked him to refer me to the the cochlear implant team in UK.

About a year after this appointment I finally got to travel to UK for my first visit with the cochlear implant team at the Nuffield ear,nose and throat hospital. The team was amazing from the get go and we soon started the process to see if I could be a candidate for the device. I had hearing tests, speech tests, lip reading tests ( with and without sound) I met with the consultant and His team and we spoke about why I thought I was a candidate for this operation.  After a whole day of tests there we were told that there would be more. The next part of the process was thinking have CT scans done to make sure all the bits needed for the surgery to work were still viable especially after all the reccurent infections. Once that was done I had MRI’s done, after all the possible tests were done I was scored on them on eligibility. I met once again with the consultant professor Sayed and his team and proceeded to learn my scores. It would be my first failed attempt at getting the cochlear implant. I was told that I was just under elegibility lines as my lip reading was still very helpful to me and I could still manage with that. I was told that we would try some new in the market hearing aids and see how things went in a year with them. So they took me to another room molded my new hearing aids and off we went. I remember feeling devestated, and crying so much because I knew that yes I was coping with lip reading but that was no longer enough for me. I missed the hearing world around me, the simple things. But as per Thier instructions I was ready and willing to try the new hearing aids out.

I came back home and adapted with the new hearing aids. Tried my best to make them work with me and they did for a short while. At first I was thrilled because they were working and I was hearing better. But within a few months these stopped being helpful to me again. In the mean time I was still suffering with constant infections and was in alot of pain, I missed alot of work due to the infections and the migraines were starting to get out of control too. I was going to have the puss suctioned out as often as I could to get a bit of relief.  I was starting to really struggle with my lip reading too as I was always concentrating and I was just tired all the time. I knew my hearing was getting worse by the day because if these infections. One day whilst there with the ENT after about a year I decided to ask him to try again, I didn’t want to give up! I knew that I really wanted the cochlear implant and I was going to fight for it as much as I possibly could.  I was tired of the struggle, I was tired of the missing out on things and of not feeling included in alot. My hearing, the infections the lipreading was just all becoming too much for me to handle and I needed a solution. So I waited and finally I got my next appointment to travel to see the cochlear implant team in UK.

Would this be it?……

What Does Being deaf Mean For Me?

Before we can talk about the cochlear implant surgery and device I want to share with all of you reading this what it means to be deaf for me.

Being deaf for me has been a struggle, I’ve never felt more isolated than with this disability ever. It isolated me from friends, family, colleagues, teachers and my peers at school. I could not hear the television, I could not actively participate in conversations and many many more everyday things. Something as simple as hearing a bird tweet in the morning, or the door knocking. The sound of my own voice. The many everyday sounds that everyone else around me takes for granted every single day.  The birth of my children really intensified my fear of being deaf especially because I had the constant worry that I would not hear them cry, that if they made a choking sound I would not be able to realise in time. If they called out or simply just needed me I wouldn’t know any better.  It means not being able to handle phone conversations for the last few years and struggling with that. I got married in 2018 and I didn’t hear the vows I lip read from the registrar In front of me, not that it took away from all the wonderful feelings of the occasion but it would have been nice to have heard more than just a few words. It means frustration at the world who does not understand that you haven’t heard the excuse of someone trying to pass you, or the person calling out your name. It’s the fear that you can’t hear the cars or motorcycles coming from behind you. It’s the desperation of someone talking so fast and you only getting some of what they’re saying therefore because you don’t want to put your foot in it you keep quiet. It’s not being able to watch movies without reading the subtitles, it’s reading the lyrics or feeling the vibrations of the song because you can’t hear the music.

It’s also a lot of relying on those around you. You rely on them for everything that you need to do. My children have adapted to my deafness and make me aware when there’s a knock on the door, or my phone is ringing. If someone is talking to me. They changed how they communicated with me and know that they must always face me so I can lip read, they were taught from a young age to talk and articulate properly as I needed this to be able to communicate with them.  It’s not just my children who have had to adapt and change, my husband, my friends, my family, everyone that I meet I need to let them know ‘ hey here’s the deal I can’t hear you so need you to be patient with me’.

The Pandemic

The Pandemic brought about a whole new range of struggles for me. MASKS! What a way to definitely isolate the deaf community, no more lip reading possible. What happened? I stopped communicating. I stopped going out, I stopped being the sociable bubbly person I’ve always been. Why? Because when I felt isolated and unable to communicate my migraines were the worst they’ve ever been, I cried so much my heart hurt and developed depression and anxiety about just being close to another human being. Having to keep telling people I was deaf and I couldn’t communicate with them through the masks was absolutely pointless, people had just lost all compassion and they looked at you as if you were completely crazy for insinuating that they should lower Their mask to talk to me, therefore I stopped trying.

I am a healthcare assistant. As you can imagine through the Pandemic the struggle was also very real at work where we had to use the correct PPE in order to not only protect ourselves but those most vulnerable. Hearing in effect with the hearing aid had been useless for some years by this Pandemic therefore and masks, visors ect to the mix that makes it impossible for this deaf person. So yet again the feeling of being useless and helpless made the depression and anxiety worse, isolating even more by needing to take medication just so I could stop crying and live somewhat of a life. I went off sick in October due to this and due to a lot of other factors that affected my ability to do my job in the best way possible.

As a final piece of information I urge those reading up until now to please be kind, please be compassionate and considerate to those struggling with deafness, because we are so isolated right now. We need all the support we can get and more love than ever. More understanding of deafness and how it affects people, training in every company should be done to be more accessible.  People need to change Thier views on deaf people, we are not stupid we are not anything less than a human being wanting to be seen and heard by our community, wanting to be understood and helped in any way possible to make this extremely hard time just a bit easier. On another note please reach out to those not necessarily deaf but that are struggling, hug them just a little tighter, let them know you are there, do not give up on them.

Xoxo

Jess

Life Before Hearing Aids And When I Received My First Hearing Aids.

Okay so let’s jump to the year 2008, after my mothers death I arrived back in my home town of Gibraltar to try and piece back my life.  I had never had hearing aids before this year as my mothers illness had taken priority so even though my parents knew of my struggle there was just no time to invest in me to try and fix the problem, so I had to learn to adapt and from a very young age was taught to lip read. Lip reading made my life easier to begin with and helped hide my disability well, especially when it came to school, friends and socialising. I would consciously sit at the very front, I would always make sure I paid extra attention worrying that if I didn’t I wouldn’t be able to handle the task I was being given or answer the questions I needed too. Deafness is something that runs in the family so unfortunately I haven’t been the only one affected by this disability. Fast forward to the year 2008, I had settled back home and my auntie knew that I was experiencing problems with my hearing and decided it was finally time at the age of 18 that I see an audiologist and try and get me some help, Off I went and had some hearing tests to determine how bad it actually was, when the audiologist came out holding his head and shaking from side to side with a frown I instantly knew it was going to be bad.  You see apart from the neglect of those around me, the number of infections I was having every year were getting more and more.  I had had grommets when I was younger in trying to aid the infections but to no avail. So out I come from the hearing test booth, he looks at me straight and says ‘ how is this possible?, how is your speech so good?, how have you coped for this long without hearing aids?’  my answer,  simple I just adapted. I said to him ‘ so it’s bad huh? ‘ Bad’ wasn’t the word he used to describe my deafness, it was terrible and he just couldn’t believe I had been this long without any help at all.

Adapting to the hearing world had been far from easy, I was constantly getting things mixed up and would hear things that weren’t accurate at all, causing a lot of misunderstandings with my peers, teachers and often family and friends. Lip reading helped to a certain extent but with that came other difficulties such as migraines from straining my eyesight. I loved school and I did well, got good grades, made friends easily and loved both the studying and the writing aspects of schooling. My teachers were always impressed with my level of work but then again they had no idea what was really going on as I was very good at hiding the huge part of me that affected me the most. As I was slowly approaching my teenage years life at home became very complicated and my parents divorced, meaning I had to become my mothers primary carer and eventually at the age of 15 leave school to look after both her and my younger brother, again my hearing took a back seat as there was more important things happening.

Receiving my first pair of hearing aids at the age of 18 was a huge milestone for me, I remember them being turned on and hearing the voices of people sitting outside the doctors office, the wind, the telephone and all this just inside the building. Little did I know that once outside a bigger hearing world would be unveiled. After leaving the audiologists office I experienced my first ever proper anxiety attack. I was so overwhelmed with all the new sounds I was experiencing that I started shaking and couldn’t move, I literally froze to the spot and began crying after hearing the cars and motorbikes zoom close to me, I had to eventually call my boyfriend to come and pick me up as I was so overwhelmed by the sounds.  I remember getting home having to take them off and eventually have a sleep as the whole experience had left me exhausted. Slowly things calmed down and I got used to having them, learning people’s voices and learning sounds I had forgotten existed anymore.  I heard the birds singing, the wind humming, people chatting and walking, I just took everything in and was thankful to have finally found the wonders of sound.  After about 5-6 years of having the hearing aids I had reached the maximum potential on them and they were becoming less and less useful to me. With help from family and friends we started researching different options for me and eventually stumbled across the cochlear Implant device.  Eventually I was sent to the UK to meet the cochlear implant team, but this would only be the first of many meetings and the beginning of struggles AND HURDLES to get the next big device that would change my life.

Stay tuned to see my journey to the cochlear implant ……………….  hold on to your seats. 

Why This, Why Now?

Okay so many of you will be wondering why write about this particular subject and why now? I am currently taking a break from work as I have had the cochlear implant surgery in April 2021 so I am still recovering and learning how to use my new device, plus this pandemic has provided me with a lot of hurdles and hoops to jump through. Let’s start with the face masks as of right now I have been trained my whole life to lip read and that is how I adapted to the hearing world around me. Therefore masks kind of hinder that method, useless at the moment.  I want to write about deafness in a hearing world and share my insight as a deaf person of the daily struggles we face, how the world has sometimes and most times not supported us as a community and also how we have coped with this world wide pandemic before us.

Speaking from first hand experience the last year and a bit has affected me emotionally, physically and mentally. I have struggled with anxiety, depression and social awkwardness. I have struggled with FEAR, Prejudice and lack of compassion from the outside world.  I stopped going out, something as simple as a shop run turned into my worst nightmare which meant that I was isolating myself further and further from other people.  I cried on so many nights just thinking about doing the most basic tasks possible outside of my home.   this pandemic nearly destroyed me as a person, you see even with all the struggles of being deaf i have always been an outgoing, bubbly and sociable person and from one night to the next that me vanished. I have a great husband, 2 beautiful daughters, wonderful family and friends and they really did rally up to support me in the most difficult time of my life.  I knew that when I looked into that mirror I was not the same person, I stopped smiling and I stopped laughing, I was more withdrawn than ever.  Face masks make the sounds words make even harder to understand and with the hearing aids being useless to me way before this pandemic hit it was just not possible for me to communicate with people outside of home where mask wearing was not mandatory.  I vividly remember using every home delivery service possible just to avoid having to speak or see another human. I did not want to explain for 100th time that I was sorry but I was deaf and needed to lip read, and be looked like I was this stupid person who didn’t know that there was a virus out there and they couldn’t lower their mask so I could lip read. that feeling of being stupid inadequate and being made to feel selfish because this was something I just couldn’t not do….. HEAR THEM.  

I remember one specific day where me and 2 friends arranged to go to breakfast because it had been so long, off we went to my town’s centre and began the walk up, we browsed shops and all seemed fine. I got to this shop where I wanted to purchase something I believe was a hard drive or something for my husband. I asked the man at the shop some questions and when he replied with the mask on I proceeded to tell him that I was deaf and relied on lip reading, the man continued as if nothing, and so I proceeded to exit the shop and continue walking.  By the time we had reached the end of our ‘main street’ I was badly hit with such overwhelming anxiety that I told my best friend that I needed to leave now, that it was time for me to go home and I remember being so emotional to the point of tears. On the way down we made another pit stop at a pharmacy and my experience was exactly the same as it had been at the shop.. Ignorance and unwillingness to adapt so I could make ONE simple purchase. These experiences with these shops and people further reinforced my resolve to avoid going out and to avoid speaking to people isolating me even more.  I remember getting home and feeling relief that I was back in my comfort zone where I didn’t need to change or struggle and I just could be me again. I remember I cried so hard  because I just thought I’m 30 years old and I can’t even cope with one day out,  and something as simple as buying a necessity had turned into this hard task. These are things that people in the hearing world need to know, these struggles are real and cause damage, and it isn’t just this pandemic that I have experienced this treatment but throughout my whole life. I have been treated differently at work, I have been differently at school, I have been treated differently socially for many many years. I believe it is time for me to show my side of the story and maybe just maybe I can change something or someone and their views on meeting a person that’s deaf and how to handle being around them.

In April 2021 I had the cochlear implant surgery and so much has changed since then, so now is the time for me to write about this subject that is so so important to me. Now is the time for me to free myself of all the heartache I have experienced through the years. The prejudice I’ve experienced has shaped me to who I am today and the pandemic has also made me realise I am strong, stronger than I could ever know. I have fought tooth and nail, cried many tears of frustration and picked myself up countless times for what I want and for what I deserve, so my family and friends, my husband and children can have a better quality of life. I had been thinking about writing for a while and now that I feel stronger mentally and have time to do so I want to share my story!!!!

THIS IS THE NEW ME!!!

About Me

Hello dear readers, my name is Jessica Durante, I am a 31 year old mum of 2 and live in a wonderful place called Gibraltar that’s in the southern part of Spain.  I decided a while back I wanted to tap into my writing skills to share a journey that has become so important to me over the last 5 months. I want to share with the world my new self and be happy with who I am as a person. I also want to create awareness for the deaf community and share my journey with deafness and now the new world of hearing.

You see, in April 2021 I had my cochlear implant surgery, for those that do not know what that is, it’s a device for people that are deaf.  In the blogs I will explain and go into more details about how they work and how it has changed my life. I have had hearing loss problems since the age of 2 and  have adapted to the hearing world through different methods. Finally when I was 18 I got my first pair of hearing aids and a few years later started my journey of 5 years to fight for the cochlear implant.

I hope my story can inspire others and can teach others about being deaf, the struggles we face, how the world has shut us out through this horrible pandemic and how we can all be different. Also to learn about new procedures that are available that could change someone’s life.  I also want to share my journey now back to the hearing world, all I am learning, all my feelings and all my expectations. Please feel free to comment, ask questions and ask for advice should you need it.

I will also be tackling a lot of other hard to talk about subjects that affected my life growing up. Divorce, religious shunning and last but not least abandonment. I want my story to inspire others, you do NOT have to become a stereotype, you CAN become a great person despite your past and you CAN find happiness within the struggle.