Guest post from my wife #2

Steven asked me to write another post as he thought people might be interested in hearing about his progress since having the implant, from someone else’s perspective.

It’s been a couple of months now since the operation and I find it difficult to clearly explain how enormous the change has been for the two of us! After the second day of switch on, the progress was rapid. The audiologists and rehab team were very surprised by it. I was less so, perhaps because I have nothing to compare it to, and also because I always believed that Steven’s blindness would force faster progress, as he wouldn’t be able to lipread.

So what has changed? Well the first thing that happened was that Steven stood at the top of the stairs one day and called me. He asked me something and I replied without thinking, but he heard. I was astonished! We carried on talking like that for a little while, just for the novelty! Next I started to notice Steven hearing the tv. He took great delight in repeating to me some of the dialogue that he had picked up. My dad took Steven to one of the rehab appointments, and Steven stayed the night with my parents on the day before. He gave my mum the shock of her life by suddenly answering one of the questions on her favourite quiz show “The Chase”! She poked my dad and announced “He’s hearing this!” much to Steven’s amusement 🙂 Tv listening is even better with the Phonak tv Link, an amazing little gadget which Steven is going to do a post about soon. More and more of these things have been happening and we’re now starting to forget how difficult everything was in the past!

An unexpected but understandable side-effect of the implant, is that Steven’s energy levels are significantly better. He no longer needs extra sleep during the day, because he isn’t straining to hear everything and exhausting himself. Another is that he just feels more part of the world. He can hear and join in with banter, for example chatting with the lady at the train ticket desk and joking with the man at our local post office. That was something which used to really bother him before, the fact that people might think him rude, or that they would be embarrassed and unwilling to repeat what they had said. This has been strange for me, as I am so used to repeating everything that anyone says. Now Steven regularly says, “Yes, I heard!” when I do it out of habit. We need to come up with a signal to indicate when I should do it, as occasionally in noisy situations, he still needs me to, although it’s rare! This has given him confidence, and he recently insisted in going to the door to collect a take-away we had ordered, and easily spoke to the delivery man 🙂

If I was to try and say what I love most about the impact of Steven’s implant, I would probably pick out two things. The first would be conversation. I love that it has allowed him to chat to his mum and my family more easily, as well as casual chit-chat with people he encounters when he’s out and about. It’s also nice that he can chat to me more easily in slightly noisier situations, like restaurants. The second would be how much it has opened up his world. Before the implant, he was able to access the world only via his amazing Braille display. So many things that he enjoyed were lost to him. Now, he has regained many activities: talk radio, football commentary, watching some tv, listening to live darts, listening to the news, listening to podcasts, as well as hearing the screen reader on his computer more easily. Perhaps most important of these things was listening to audiobooks. I remember crying when Steven told me one day that he really couldn’t hear them any more, especially when it was so bad that he cancelled his Audible subscription. It makes me really happy that he has that back.

So what’s still hard? Very noisy situations, or a lot people chatting are both still tricky, although nowhere near as much as before. Music is difficult, although he can get some enjoyment from it. Direction is also still tricky. He is often not sure where I am from my voice, something which will change when he has the second implant. He also still struggles with strong accents.

All in all, the implant has made a huge difference to Steven’s life, and by association, mine and I will always be grateful to all those who got us to this point.

In praise of the Braille display!

One of the things we were most worried about during the 3 plus weeks between my operation and the switch on was how I would keep myself entertained.

Not being able to see means that, for example, I rely on audio output to access my computer via something called a screenreader, (I use JAWS by Freedom Scientific) that literally does what it says on the tin and tells me what is on screen. Using the keyboard and various shortcut keystrokes, I can easily move around the screen, browse the internet, read emails etc. Obviously, if I couldn’t hear very well, then all this was going to be closed off to me. We just resigned ourselves to the fact that I was going to have a very dull few weeks with my only entertainment being provided by the RNIB’s braille library. This was until we heard about Braille Displays. Braille displays provide access to information on a computer screen by electronically raising and lowering different combinations of pins in braille cells. A braille display can show up to 80 characters from the screen and is refreshable—that is, it changes continuously as the user moves the cursor around on the screen, using either the command keys, cursor routing keys, or Windows and screen reader commands. They interact with the screenreading software providing me with access to everything on my computer in braille. Now, the idea of a Braille Display isn’t new to me. I used one at work for 5 years. However, I’d never considered buying one myself as they are very expensive and my hearing at the time was good enough that I could hear what the computer was saying to me.

The thing that got me thinking about getting one for myself was an article in one of the RNIB technology magazines explaining how some Braille displays now had Bluetooth functionality, meaning they could be paired with apple products such as IPhones and Ipads etc. Apple has incorporated a free screenreading programme called ‘voiceover’ in to their products which is how the Braille Display is able to work with them. The article went on to mention the fact that, it was possible to download the free kindle reading app and read your kindle books in braille. This is pretty amazing. Previously I’ve been reliant on the small number of books which are converted to audio books or Braille. This is a very small percentage of the books published each year. With the deterioration in my hearing making audio books less easy for me to access, this limited my reading even more!

I’m a suspicious chap by nature and I needed to be convinced that this was actually as good as it sounds. One of the retailers who sell Braille displays here in the UK (Sight and Sound) offered to come and give me a demonstration and, not to put too fine a point on it, it blue my socks off! Now, for the first time, I could access my computer and phone in Braille! We couldn’t get the credit card out quick enough! I was also lucky that my phone provider was willing to give me a free upgrade to iPhone 5, so that I could make the most of the Braille display.

It comes with a swish carry case which provides good protection on the move.

This has made such a difference since I purchased it, but it has been particularly amazing during my recovery from the operation. I’ve been able to communicate with the outside world as well as reading my kindle books. If I run out of things to blog about, I can always start posting book reviews…

As I mentioned earlier , these things don’t come cheap. Here is a link to the Braille display we brought (other products are available!) http://www.sightandsound.co.uk/shop/products.php?product=Focus-40-Blue-Braille-Display

I was fortunate that we some savings and I know that, sadly, not everybody will have the money for such an expensive item. We did research possible financial support for this but, for adults, none was available unless you could get it through Access to Work if you have a job. Children can often get them as they can help with school work. I think it’s a product that can transform deaf blind people’s lives, and definitely worth saving up for if you are able.
So, now I’m off to read my book! Bye for now. 

Guest post from my wife :)

Steven and I occasionally chat about what amazing innovations and medical progress might be made in the future. I always say that if there was the option to give him sight and the option to restore his hearing, I would choose sight. This is because I would love the safety that would provide him with, and the freedom. Steven strongly disagrees and says that he would always choose hearing. The first time he told me this, I was quite surprised, because to me, it’s his blindness that creates the most challenges. Once he explained it though, I completely understood. He has never known sight, and has learned to manage without it right from the start of his life. His hearing however, he didn’t lose until his mid twenties, and he misses it very much.
He talks fondly about how much he used to enjoy audio books, and how when he was listening to a good one, he would listen to it non-stop for most of the weekend. He also used to enjoy tv series like Blackadder, and listening to football commentary and music (though, as far as I am concerned, he has rather questionable taste. Right Said Fred- noooo!). Even in the time that we have been together, I have seen the amount of time he spends doing these things dwindle to virtually no time at all. He occasionally can manage to hear some football commentary but it’s a strain, and he can’t listen to audiobooks at all now. I think we were both concerned about how much his world was narrowing. It was upsetting for him and I found it a terrible thing to watch at times. Norrie’s is a cruel thing in that way. It was a great relief that we had started on the journey towards a cochlear implant last year, and that we were finally getting somewhere! It was in this sort of limbo period that Steven discovered the wonders of a Braille display/iPhone combo, but that deserves its own dedicated post!

Several people have said over the last couple of years, that they think the fact that I am a primary school teacher is one of the things that makes us work as a couple. I suppose it’s true that I am used to being patient, used to thinking ahead to spot difficulties before they happen. Perhaps I also have more experience of disability and additional needs due to my job, so those things do not faze or worry me. If those things are bonuses in our relationship, then that makes me happy, because I love my job and I love my husband, and it’s nice that the two things are mutually beneficial. I talk about Steven often to my class, and he has visited the school to talk to the children about being blind, using technology, getting around and reading Braille. They are interested in the things that he can do and how he does them. They were fascinated by the idea of him making his own sandwiches in fact one little girl was horrified that I “let” him use a knife, but others were confused as to why he couldn’t drive! He’s something of a celebrity to them and one of the children even gave him their smiley face sticker and told him that he couldn’t take it off.

My hopes for the future are that I will see Steven being able to listen and participate more easily in conversations with one or two people. He’s a sociable person and enjoys chatting, and it’s frustrating for him that he can’t. We do our best in restaurants, and when we’re in large groups, with me repeating what people say to him (he tunes into my voice better) and by using some deaf blind manual signing. It’s tricky though, for me to keep up with the conversation as well as make sure that Steven knows what is going on, so I’m not always able to provide him with as much information as I would like. I also hope to see some of his favourite activities returning over time, especially listening to audiobooks, but I have no illusions that he will be able to hear everything, or that it will be an easy journey. I feel excited for him when I think of switch on and the rehab and just the idea of the possibilities ahead. I tell him that he’s lucky that he has his own personal tutor to help him with his rehab homework. He’s not so sure! He’s worried that I will be something of a hard taskmaster, but it’s all for his own good 😉
I feel very proud of how much my husband has achieved, and how he has faced all the recent challenges. It must be his time now to get something positive back.