I have had some additional personal challenges recently with the reality that my first trusty and gorgeous guide dog Unis is retiring early and that I will continue my journey with the beautiful young Isabella.
Isabella will never replace Unis, just take me on as her big challenge!
It is hard to describe the mixed emotions this new scenario has put on me. Other guide dog owner friends who've shared so much with their four legged friend will understand the pain and I am so grateful of the support from the many friends I have as a result of having Usher Syndrome and a guide dog, you know who you are and I so appreciate your recent support.
I had to switch off and be on my own to untangle myself from what I can only describe as a kind of grieving for Unis, feeling so grateful to her for being at my side through thick and thin and the elation that Isabella will give me back the independence I have struggled with over the past year as Uni's anxiety worsened hence her early retirement.
I needed that time on my own to think and get my head around things. What this has often meant to me is taking out my hearing aids and having silence, a sweet and peaceful silence that many deaf people enjoy and will identify with. To literally switch off, to take time to think without interruption, however, strangely this time I didn't want that silence, I wanted music!
It dawned on me then that I am hearing music, and particularly lyrics better than ever before.
Streaming music directly from iPhone to ReSound LiNX3D is absolutely amazing. Music can change and make moods. It makes me happy or sad, it can make me cry, it can motivate, it can be uplifting and often all emotions in one song it dawned on me music was exactly the tonic I needed, not silence.
Music has been my saviour over this rough patch. I have always enjoyed music but have never listened to the lyrics like I do now. I can hear through the music to the words, previously it was sounds, rhythms and often vibrations, it didn't bother me as I simply enjoyed music, I just didn't realise how powerful words can be.
I actually lost myself in lyrics thinking about Unis and Isabella and moving forward with my life and it has definitely helped me with the transition I'm facing.
Music is of the moment, songs I enjoyed in the past but hadn't really listened to the lyrics or made up my own became meaningful of my situation and strangely the various songs I listened to could be taken as happy or sad, needless to say I cried and laughed my way through quite a few playlists.
I can't say I like one genre of music, I like so many different things.
Music reminds me of certain people, of times and places, of happy and sad times.
I looked over my playlists and relived back to when I spent time with my grandparents when I was little, back then I had analogue and early digital hearing aids. I sang to my favourite tunes not even realising I was making up the words, I sang how I heard the words. Not any more, I hear the lyrics clearly and I sing - apparently my singing hasn't improved, however, I'm singing the correct words.
Some of the amazing holidays and working trips I've enjoyed, the things I could see back then but now I'm reliving things based on what I'm hearing.
I could name lots of songs with lyrics I find particularly powerful and healing but will just name a couple. The first ironically is music first heard at my grandparents house and back then the words had no relevance to me but now mean so much, ‘Something inside so strong’ by Labi Siffre https://youtu.be/PcKoYGNj0BU and the second with real meaning and a song my Mum often plays in her car, Lean on Me’ by Bill Withers https://youtu.be/N5jlPL1tNDY this music is not music I hear anywhere else but with family and I guess for that reason it fills me with warmth.
My hearing using ReSound LiNX3D sets a scene my eyes no longer provide, I have no idea how I would be coping today without this unbelievable technology it has truly enhanced my life, given me confidence and connected me to new things.
Being able to hear so clearly is priceless.
My blindness often means I'm relying on my hearing to see things, to locate things and now to relive things. Directional sound and spatial awareness together with crystal clear hearing and exceptional connectivity has enabled me to compensate where my sight fails and to be as inclusive as is possible living with deafblindness.
If you can imagine your eyes closed or in complete darkness you will appreciate the importance of hearing for somebody living with Usher Syndrome (deafblindness) it isn't easy, however I have accepted where I am at, there is no doubt I grieve for perfect sight at difficult times but nowhere near as much as I used to.
I was blessed to have had my beautiful black beauty Unis and now the beautiful black cutie Isabella who will continue the great work I enjoyed from Unis.
This emotional journey has been lived through based on sound and hearing and again I feel lucky to have the ReSound LiNX3D smart hearing aid technology to help me find my way.
At the end of my work and networking trip to the other side of the world, Mum and I decided on a a trip to the beautiful island of Bali to spend the last 10 days relaxing.
Arriving in Bali was surreal, it was dark outside, I hate arriving anywhere in the dark as I see so little.
We were very tired and our body clocks were already extremely confused! We were met with intense humidity whilst looking for our taxi service.
At Denpesar Airport we were met by a sweet Balinese gentlemen dressed in traditional Bali attire.
I felt quite important when Mum pointed out this man who was stood waiting for us holding a banner with our names on it. This lovely man spoke perfect English and without much of an accent so I was able to understand him quite easily, accents can be a problem for the deaf, thankfully for me, not this time.
The hour drive to Ubud for me was exhausting, it was really dark so I could not appreciate Bali's ornate beauty. What I could see was darkness amongst blurred street lights the lights hurt my eyes. It was incredibly disorientated amd quick sick so I put on my dark glasses turning my focus to communicating with the gent and his colleague the driver taking us to our destination, thankfully with no communication barrier it was pleasant interacting and finding out more about Balinese culture.
On arriving another surreal experience, I was guided by my Mum up some large steps, the lighting was low and I could hear water fountains, both left and right of the rugged steps but I couldn't see them in the dim light. I stopped on the steps holding onto my Mum’s arm, I had not experienced the still yet peaceful sound of water flowing before - I have to admit I felt quite emotional and incredibly lucky to have hearing aids to provide me with such beauty I couldn't see, but my imagination filled in the gaps.
As we carried on up the steps I sensed we were “inside”.
However Mum informed me whilst we were at reception we were still actually outside. Mum gave me a quick audio description which helped me form a picture of serene beauty and tranquility in the middle of a jungle.
There was water all around us in the lobby/reception. I felt frustrated I couldn't see it all, but so grateful to hear the flowing water, to smell the natural smells, flowers, damp trees, the smell of the Balinese countryside and to hear new sounds, I’ll come back to those sounds, the real feeling of peacefulness.
At the reception we were once again greeted by more incredibly sweet welcoming Balinese staff.
After check in and a complimentary sweet fizzy drink (was not totally sure if it was alcoholic or not!) all my senses were truly tested!
Mum soon grabbed me and guided me back down the steps and to what I was told was a golf cart already loaded with our luggage. We were then escorted to our chalet, what service I thought!
On opening the wooden gate into our private chalet I could see a little light coming from within, I couldn't wait to get inside, get some better lighting and really see where I was.
WOW, I was not disappointed, we were shown around our chalet like VIPs, I felt incredibly humbled. The bed was draped in what looked like sheer sheets hanging from the ceiling, the floor was made of large man made concrete slabs, small tables were decorated beautifully with Balinese flowers. The whole decor was ornate and stunning. The bathtub was almost the size of my double bed at home, and then a door opened to what was our outdoor shower! Again everything beautifully decorated with flowers, plants and everything ornate. I was quite overwhelmed and still I could hear noises, noises I hadn't heard before!
I was really tired that night but I couldn't sleep, I never sleep with my hearing aids in but on this particular night I didn't want to take them out. I was enjoying hearing the sounds of the jungle, I knew I could hear birds outside and some running water but really couldn't decipher the other noises, I was fascinated by the sounds, it still amazes me that I can hear outside with my Linx2 smart aids, something I could never have done previously. I went 20 years thinking you only hear sounds in the same room as you!
I fell asleep for the first time ever wearing my hearing aids!
The following morning was an out of body experience! I woke to morning sunlight shining through the sheer drapes from the ceiling around the bed, fortunately the drapes stopped the bright glare of the sun so I wasn't blinded by the brightness.
I hadn't noticed how many large windows with blooming large leaves growing in and out of the chalet met with the primitively made roof in our ornate and beautiful chalet. It all felt incredibly natural, the outdoors reminded me we were in a jungle in Bali.
On opening the patio door, WOW, I couldn't quite get a grip!
Scanning around I noticed a pool, being overlooked by a Hindu God statue fountain, ahhhhh, that was one of the sounds I’d fallen asleep to. The statue was also decorated in beautiful natural Balinese flowers, two sun beds on a small decking adjacent to the pool, and then a straw roofed hut with two massage beds also decorated with flowers. On the patio was a huge chaise lounge, a sink a table with a large bowl of tropical fruit on top and four chairs what more could we need?
A trip to the spa I thought, that really would be paradise, so we booked for that evening.
I was desperate to see what I had missed the night before so Mum and I tested out the outdoor shower, quite an experience and again I was taken aback by the smells of the hand made shower gel, soaps and shampoo it really was something I'll always remember.
Dressed and ready we left our part of paradise and ventured up to the hotel reception area where the restaurant was to be found.
My Mum was chatting to me on the short walk but I wasn't listening, I was still fascinated by the sounds coming from all around me, I could definitely hear birds and definitely more than one kind, I could hear running water. I was trying to concentrate really hard on what I could hear. The sounds were all quite relaxing, I'd never experienced these particular sounds before.
Mum guided me to reception and this time I could see the ponds of water either side of the walkway and I could see huge fish and again fountains shaped like Hindu gods and decorated in tropical flowers. There were also burners that smelt tropical, it really was a feast of the senses.
The receptionist greeted us and offered us a local hot drink whilst we decided on treatments for later that day, finally I felt able to relax after a very long and busy couple of months.
We had a breakfast of fresh fruits and local produce then headed back to our private paradise to enjoy the sunshine and warmth of Ubud.
I was able to lay in the sunshine and unwind listening to the unique sounds of the jungle. My headache lifted and I felt good.
After a day of sheer relaxation and room service I was looking forward to some pampering.
On arriving at the spa we were offered drinks, haven't a clue what they were but they smelt of ginger but tasted of something else!
Two ladies showed us into the private room overlooking the jungle. Inside where two massage beds, the view was stunning.
It was amazing, the whole room overlooked the jungle, ornate frog statues were everywhere, beautiful flowers, I couldn't believe the colours, the smells and the sounds, sheer peace and tranquility.
Having been massaged with magic fingers and hands from head to toe, we were then covered in a seaweed wrap and then before long we were told to shower and then soak in the jumbo sized free standing bubble bathtub which was full of floating flowers with an aroma I'll never forget surrounded by candles it was truly heavenly.
After the masseuse's left mum and I looked at each other and smiled, a long time since we shared a bath! Fair to say we laughed.
'Where should I put my hearing aids Mum?'
I couldn't see anywhere safe to put them without losing them in the jungle or the water!
Mum took them and put them on a shelf near the towels.
After our glorious soak in the huge bath overlooking Bali's outstanding nature, I remember feeling happy that it was still light outside so I could appreciate my surroundings even though it was in silence, it was absolutely stunning.
Getting out of the bath we felt completely fresh and relaxed.
The warmth on our skin dried us in no time, though being wrapped in a towel was somewhat refreshing.
We sat quietly in rocking chairs looking out watching the sunset and darkness descend upon us before getting dressed.
‘I need my hearing aids mum’ Mum's glowing face frowned, she couldn't see them, I was of no help in fading light so sat still and safe whilst Mum searched and then the horror, surely they have not fallen into the giant bath of scented flowers and bubbles!
Mum put her hands in the deep water and horrified she fished out one hearing aid, followed by a second we were both speechless
My mind was racing, 9 days without hearing, 9 days to not appreciate the beauty my hearing aids provide me, the unique and new sounds of this beautiful place and the everyday things like conversation, chatting with my Mum, conversing with the locals, communicating, there'd be none of that accept on those rare occasions when my sight is at it’s best and I can lipread. My mind was racing. I felt physically sick the thought of being blind and not being able to hear filled me with horror, how would I cope.
Mum was speechless, in shock, she knew 9 days without me being able to hear would be tough on us both and would definitely have spoilt our holiday.
Mum insisted I take the batteries out and throw them away. We got dressed in record time.
Mum wrapped my hearing aids tightly in a tissue and put them in her purse.
The walk back to our chalet was in silence. I hung on tightly to Mum’s arm, I felt very disorientated in silence and darkness and felt very vulnerable.
As soon as we got into the chalet Mum unraveled the now drier hearing aids and placed them in a cup while Mum found the hairdryer going on to use it aiming its heat into the cup for 15/20 minutes, it felt like a lifetime after which she asked me for new hearing aid batteries, neither of us felt very positive but it was the only hope we had.
I took the first hearing aid, fitted it in my ear and switched on and there it was the short signal sounds to say it was on and it worked, I was beyond happy, I felt elated. One working will be better than none I thought as I reached for the second hearing aid, put the battery in and again those switch on sounds and hearing aid two on and working WOW, I was so overwhelmed I was tearful - these tiny hearing aids are a huge part of what makes me tick.
I didn't want to switch my hearing aids off again that night, not only was I afraid they may not come back on but I wanted to continue to enjoy the sounds of paradise.
Thankfully my hearing aids did not let me down and continue to work and I appreciate them more than ever.
The following day we talked a lot about the sounds of Bali and that one sound I kept hearing but couldn't identify.
sat at the bar after a tropical shower I asked Mum and the barman what the strange, louder than normal noise was ‘ah’ said the barman, ‘that is the noise of the frogs, they are always noisy at night and even noisier when it rains!’
I was wide eyed, anybody who knows me knows I have a bit of a thing for frogs and yet I had never heard a frog before!
How I love the sound of frogs.
That hour or so of shock was a reminder to me just how important hearing is to me and why others like myself should have the opportunity to use such impressive technology, it really is life changing.
There is no doubt in my mind, if my hearing aids had not worked after the accident at the spa without a doubt I would have struggled, my holiday would have been ruined and my confidence destroyed.
Hearing is my access to people and without people and sight I fall into isolation how obvious that became that day in paradise.
I have written and spoken extensively about my GN Resound Linx2 smart hearing these aids over the last 20 months and what they have given me but that day in Bali, the fear I felt at not benefitting from hearing made me very aware that praise I have given them is little compared to what they give me every single time I switch them on.
NB I would not recommend having your hearing aids anywhere near water or where they could be damaged but am thankful my pair stood that terrifying ordeal.