Last week I hit the headlines when a video of me hearing for the first time soon after having cochlear implants fitted went viral. If you have no hearing it is tough to picture what it will be like to hear for the very first time, and I was completely overwhelmed by the encounter.
I was born profoundly deaf, despite the fact that this wasn’t instantly obvious to doctors, and it was not till I was two years old that I was formally diagnosed. My earliest memory is that of my teary mum watching me leave in a taxi each morning on my way to school sporting my phonic ear box connected to my chest. Fortunately, hearing aids have enhanced in excess of the many years, and in most situations it is no longer right away clear that a man or woman is deaf, or in my case now, deafblind.
As a younger grownup I delivered deaf-awareness coaching and actively became concerned in shifting attitudes and bettering solutions for folks with disabilities. I was a really assured youthful lady, and currently being deaf was just element of who I was. But this all changed. A single day, driving home from work, I realised that I could no longer see what was coming in my wing mirrors. I gave up driving there and then and went to the physicians for exams. It was confirmed that I had Usher syndrome. I was 29 years outdated.
Usher syndrome is a genetic issue that has an effect on both hearing and sight. The sight loss is caused by a problem known as retinitis pigmentosa, which leads to a progressive reduction in vision. There are three sorts of Usher – I, II and III. The age of onset, the extent and progression varies with each particular person and type. There is no remedy, but measures can be taken to manage the emotional and day-to-day impact. Research presently underway implies therapies in the potential may possibly slow down the charge at which a person loses their sight.
Being diagnosed with Usher syndrome drastically changed my lifestyle. I did not know exactly where to start, and found it tough to contemplate that I was no longer just deaf and had to start off living existence as somebody who was deafblind. I felt that I had lost my identity, but began to realise in excess of time I was in reality just the same.
The future petrified me – I knew my sight would not come back but get worse – but stage by step I had to put together. I received instruction in how to use a cane and was offered a manual puppy to support me adopting a positive outlook genuinely aided. As we are all acquiring older, daily life throws factors at us and we have to deal with emotions and problems the ideal we can, and I discover it tends to make you a stronger individual.
Prior to you have cochlear implant surgical treatment, there are no ensures it will work, so in some ways I wasn’t expecting a lot. Hearing sounds such as birds singing and water running for the very first time is past words. Sharing this second with the globe has also been wonderful and has been a brilliant opportunity to raise awareness of Usher syndrome and of deafblindness. A single of my pals phoned in to Lauren Laverne’s radio display on 6 Music, and together they developed a playlist of songs for me to listen to, which she played on air. The response has been outstanding, with tons of strangers sending me songs to include to the playlist via the hashtag #songforjo. I’m going to listen to them all.
My day task is doing work for the deafblind charity Sense as an Usher peer mentor, supporting other individuals with the same condition. I am glad that the video of me has helped raise awareness of Usher and deafblindness. It truly is strange to feel that so many men and women have witnessed what was possibly one of the most substantial moments of my lifestyle, but I’m glad I chose to share it and I hope my story inspires other people.