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.

A week after switch on

Well, it’s been nearly a week since my cochlear implant was switched on last Thursday and, in terms of what I can hear, it has been quite a week!

 

Last time I mentioned that the adjustments the audiologist made to the implant on the second day of switch-on made a huge difference to what I could hear. Since then I’ve been able to have conversations with Victoria without my hearing aid in the other ear and can often hear her even when she is some distance away. The hearing therapist had given us homework, similar to the exercises I outlined in my last post and I am now able to hear the words easily in nearly all cases. While I could hear Victoria’s dulcet tones (she told me to say that) very easily, the test would be whether I could hear other people speaking. So,  we were interested to see how I would get on when my PA came to work on Monday as I’ve often struggled to hear her more high-pitched voice. Well, after a couple of minutes of being freaked out by how deep and manly she was sounding through the implant (!), I could hear her just fine. I was able to chat to her in the car, which I haven’t been able to do previously, and I could even here some of what the guy in the shop was saying to me, which is a definite improvement.

 

I bought a pair of cheap headphones so that sound from my radio/computer etc could be brought directly to the implant. The way the implant is designed makes it easy to put a pair of headphones over the top, and straight away I was able to hear a football match on the radio. I couldn’t get every word, but I could follow the gist of what was going on. I listened to another couple of games the next day and it got even better. I’ve also been experimenting with audio books and talk radio to see how much I can hear, and, the answer at the moment is pretty much everything. Music still sounds pretty horrible but I haven’t spent much time getting used to that at the moment. All in all, I’m really pleased to be doing some things that I really enjoy, but haven’t been able to manage for quite a while  🙂

 

The headphones are only a temporary measure. When the stuff from Advanced Bionics finally arrives at the hospital, I’ll be able to use something called the ComPilot. This clever little thing is warn around my neck and can be paired with my Bluetooth devices, i.e. my Iphone and laptop. This will send the sound directly to the implant which should improve things even more.  If you’re interested, you can find out more here: http://www.phonak.com/com/b2c/en/products/accessories/compilot-tvlink-s/overview.html

 

I’m very lucky that the audiologist at my hospital negotiated hard with Advanced Bionics and persuaded them to provide the compilot as standard to their patients. Great news for me, as it’s not cheap!

 

I’m hoping it will be available when I go for my first mapping session on Friday. I’ll update the blog on Saturday with how that went 🙂

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.