Hello Everyone! Would like to wish you all happy deaf blindness week! I’m so sorry that I haven’t posted in it feels like ages! But I’ve got soooo much to tell you all and I can’t wait to tell you everything. I think this blog is going to be a very long one so I think you will need a lot of time to read it, sit down with your favourite thing to drink and a few snacks and I just hope you are looking forward to reading it. The things I am going to tell you are, going to the hospital and getting tests done, getting an Apple Watch, more stuff about my cane and meeting others with usher syndrome such as Molly Watt so here it goes....
So let’s start from the beginning of these hectic months, so I went to the hospital to have an electro diagnostic test where I had my eyes numbed and I had wires put under my eyes to test my muscles and nerves in my eyes, not going to lie I was sooooo nervous because I had no idea what was going to happen and I kind of liked it that way but then I didn’t if that makes sense. Like I knew that if I didn’t really know I wasn’t going to freak out as much, honestly it wasn’t that bad! There was just no pain at all which was soooo good, the only bit that wasn’t very nice was the eye drops and then when the doctor put these sticky pads on my head he had to use some sticky glue for it to stick and it was gritty so it hurt when he was putting it on my head it was like a scratch but yeah it really wasn’t bad which was such a relief haha!! My next appointment to go to my normal hospital is in August when I will find the results as much as I do want to know my results it’s not going to change anything, as you all know there is no cure, it’s still upsetting but there’s no point waiting for one to happen you’ve just got to keep going!! The people who have had eye drops will know what I mean haha, your eyes do just water!
Next up is about MY APPLE WATCH!!!! I haven’t wanted an Apple Watch just for the fun as you know I love technology haha! But now my eye site is getting worse I’ve found out that an AppleWatch is like the next best thing because it’s small for my peripheral vision and it vibrates to notify me when I’ve got a text or call. I can answer calls on it and I can hear it very well and it’s always with me, so it’s very handy! Another thing I’ve learnt is that it can tell you where to go if your on google maps, I had a go on the weekend it was really good, different taps tell you to go left or right and then when you have reached where you have to go. It is a very good gadget so anyone with usher syndrome I would definitely recommend it. I’ve only had it for about a month and it’s changed my life completely!!
So here goes the more emotional talk, as you all know my views on having a cane from a previous blog. The lady has come in again and has ordered a cane for me, like really? I sooo don’t want one but then I’ve got to try! We were going to have a go with one she has brought in but because of exams being on we couldn’t which I was quite happy about haha! I just hate the fact that when I get the cane out I’ll be read as blind, I’ll become a book! I just don’t want to be seen as blind because I’m just scared that people will say stuff like omg she’s blind or oh yeah let’s trip her up she won’t see me or even laugh at me because I’m holding this cane. Just yeah I’m not really happy about it but at the end of the day it will tell others to stay away from me and to just mind out the way, if they don’t they will get hit haha! But yeah no one is alone, people do have canes and manage so I’m sure I will. Once I start training I may enjoy it which will be good haha!
The final thing I want to talk about is on the 22nd June there was an Usher Kids Day for children and families who are suffering with usher syndrome and need help and get to know others with usher syndrome. I’m not going to lie I really really didn’t want to go because I was like what difference is it going to make? But believe me it made me way stronger and I met some amazing people who I can now talked to about my condition and help me with any problems. I spent a whole day there and
everyone was so nice and so understanding and it was nice to know that I wasn’t alone. It was very emotional hearing other people’s stories and about how they felt but also how similar everyone’s symptoms were! It just brought a massive relief that I’m not the only ‘deaf blind’ person in the world. One of the best things that happened to me was meeting literally like my hero Molly Watt who also has Usher Syndrome, I don’t know how I would of coped these couple of months if it wasn’t for her
positivity! She is literally the best person ever in the world and just to meet my idol was sooo emotional! She was just soooo lovely and it was really nice to get to know her even more although I was in a right state haha how embarrassing!!
I haven’t blogged for a while, but feel this heartfelt blog needs to be written.
I had never really considered the sadness, even grieving that happens when somebody you have loved and relied on all your life changes overnight and that the security and stability you’ve felt all your life disappears!
My greatest sadness up to this point had been when my Nannie Pat died, just months before my Usher Syndrome diagnosis.
Nannie Pat had been at the heart of our family and had been the most hands on grandparent ever. My memories of her are so clear, my brothers, sister and I spent so much time with her and Grandad Colin. We stayed with them regularly, they babysat for us, we went on holiday with them but looking back probably the most valuable thing of all was she always there for us. Nannie Pat would sit on the floor and play with us, draw with us, make things with us, cook with us, read with us, she really was the best and I miss everything about her.
I still have a great relationship with Grandad Colin but goes without saying he misses Nannie Pat as much or more than I do. Mum says her spirit lives on with us and I do believe she is right but doesn’t stop me wanting that last conversation with her.
This person has been a huge part of my support system, the system that has got me through the difficult daily challenges of my Usher Syndrome diagnosis, of mental health challenges. Supported me through the horror experiences of education and further education, helped me set up my company and encouraged me to be the person I am.
I have taken for granted the love and support I have received and believed no matter what Usher takes from me that love, support, safety and security would always be mine.
This person promised to help me be more independent, something I have wanted for such a long time.
I feel these things are gone and life looks very different.
As a result I didn’t think twice about returning to counselling to deal with my feelings of loss and insecurity.
I remember when my Mum first insisted I needed counselling after the bullying I experienced at school. I had to be dragged there, how glad I am my Mum is so strong to insist and drag me there, I hated her for it, told her ‘I’m over 18 I do not have to do this’ she rightly overruled me and how glad I was as after more sessions than I can remember I found my way forward.
Counselling is not something to be ashamed of but something that shows a willingness to speak and to listen when sometimes you feel you have lost your way - right now that is exactly how I feel.
Usher Syndrome can be very isolating even when you have company, particularly through the winter months when the condition is so much more challenging. As a result I always look to and rely on the support of my family and friends because it is them who keep me going through the more testing times.
One thing I have learnt is people do not ordinarily change beyond recognition overnight, if they do there is something not right and also that it is only the most determined that seek help - I desperately hope you are that person.
Work wise this year has been challenging but also amazing in lots of ways, I have worked all around the world, worked with some amazing Companies and people, met some amazing people and next year I hope to do the same.
Along the way I’ve experienced such a rollercoaster of emotions, the early retirement of my beloved first Guidedog Unis, the anxiety of needing help getting to and from work near and far, the gratitude of having my Dad to help out whilst my Mum was laid up with a broken Ankle, the elation of being matched with Guidedog Isabella.
Isabella, affectionately known as ‘Welly’ has definitely lit up my world and given me back the independence I missed, a huge high for me.
Sadly I end this blog on a low, knowing one of the most special people in my life has gone and not knowing if or when he will return.
I can only say, thank goodness for counselling as this will take a while to work through!
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.