Hello everybody,

Just a quick note to show off a little… I wrote this post all by myself! At last, I am connected to the world at last, albeit somewhat slower than usual. This is due to the joys of voice recognition software which since having to wear my ventilator full-time I had deemed redundant. I am obviously delighted to learn otherwise and look forward enormously to speaking with you all on a one-to-one basis.

I’d also like to take this opportunity to thank every contributor to the blog since we started, old and new, as your words of support and encouragement really do spur us on.

I will sign off now as I hadn’t realised how tiring talking to your computer can be.

Much love,
Neil

Neil had tried to use voice recognition software before, he had bought an off-the-shelf secretarial version when he first began to find typing difficult. He had given up his laptop because it made his wrists ache to reach the keys. We then bought a PC with a wireless keyboard so that he could put the keyboard on his lap if it hurt and it gave him an altogether better posture as he was looking straight ahead at the screen instead of slightly downward, easing strain on his neck and shoulders. This worked for a while but eventually it became too tiring for his arms and then his hands began to lose dexterity. These changes were cruel. There was little way to decipher whether something was only difficult for a day or if it had gone forever.

I remember him being briefly impressed with his off-the-shelf software solution, but it soon had to recognise more swear words than anything else, and wasn’t long before it lay untouched. There was a brief revival when friends came to visit and suggested using a better quality microphone, which worked but was very sensitive to any surrounding noise. As Neil said, he had to give up on it when the ventilator became full time. The inescapable whirring sound caused too much interference and once again, a lot of swearing.

Until this post, most of the blog had been dictated either through myself or willing visitors. The new voice recognition software gave him back his voice unfiltered, without someone sitting next to him, and he really started to open up his thoughts. Just a few weeks before, he had expressed how important communication was in his Advance Directive, so the joviality of this post is not to be underestimated.

It still wasn’t easy for him, it took a lot of physical effort to speak to the computer and even this short post would have taken him around an hour.  Neil had to be in a room on his own due to noise interference and I had to be very aware of the change in his voice over the baby monitor. I had to listen out for any difficulty, demands or choking (although I do remember my mind wandering a few times and suddenly realising the swearing over the baby monitor was aimed at me and not the machine). He had to time his words, he could fit in three at the most on an outbreath and sometimes the ventilator would cause a burping sound in his voice so he would have to delete and start again. Quite often his microphone would stop being effective and needed to be re-positioned.

I’m glad there is a sequence of Neil battling his way through writing a post in I AM BREATHING, as the words he wrote never disclosed the effort behind them. – Louise (2013)