As I’ve mentioned, I now “speak” via an app on my phone which I type into and which then speaks in mostly my own voice, having banked it whilst I could. This is wonderful technology and I thank my lucky stars that I live in such times, especially as I can no longer write. It’s not, however, without its frustrations.
I’ve come to realise just how fast-flowing our conversation is. The number of times I’m asked a question then, by the time I’ve typed a reply, the conversation has moved on, the questioner has forgotten all about it and looks at me blankly when I speak. So then I have to explain what they asked me – and so it goes on. Or, if I’m feeling particularly bloody-minded, I say “I’m answering the question you just asked me” and leave them to work it out – which usually they can’t! More often than not though I anticipate this problem and simply delete what I’ve just typed without voicing it.
Either that or they continue to fire questions at me whilst I’m still trying to answer the first!
Or there’s an awkward silence whilst I type. So really, you can’t win with me! 😄
If possible, I try to communicate as much as I can without using my phone because it’s tiring typing now. In this instance it’s not helpful when I’m asked a question and given two or more options for my response; or if someone asks me a yes/no question – my grunting response could be translated either yes or no as both sound the same!
My biggest pet hate though is when people peer over my shoulder and at my screen as I type. Some even read it out. I don’t know why but this strikes me as rude and it really, REALLY annoys me! If I can, I contort myself to try to hide the screen! 😂
I sometimes ask myself: if I could get back one ability out of mobility, eating and talking, which would I choose?
Eating is tempting. I’ve always loved my food and used to enjoy eating out or even just having favourites at home. On my trips overseas with work, my evening meal was always the highlight of my day! Weirdly, I still enjoy watching cookery shows on TV. I watch people stuff their faces with huge mouthfuls, move the food around and then swallow – all with subconscious ease, and feel so envious that I now have to concentrate to swallow a small sip of water. My nourishment comes in the form of a milky liquid, delivered directly into my stomach via a feeding tube (a PEG). When I’m hungry now and smell or see the food Sue is preparing my mouth waters. I think of everything, I most miss a Sunday roast. 😋
So, tempting – but then there’s mobility. If I could walk I could take the dogs out, get down on the floor to give them big cwtches and re-establish my bond with them. In fact, I could do anything I wanted – I wouldn’t be disabled! Even get myself to the toilet! 😂 It would also mean we could still go to the caravan, so it’s a serious contender.
But…who are we if we can’t communicate? We can express our needs, our wishes, our feelings, our whole personality. I used to be quite reactive and mouth-off when antagonised, but now I’m far more considered – it’s just too much hard work!
Of course it’s good to be able to communicate important things, but everyday conversation with friends,
family and loved ones – so ordinary, sometimes mundane even – is also so, so precious. A while ago Sue and I went to M&S. It was lovely but I couldn’t natter to her as we pottered around looking at things, me in my motorised wheelchair – if I wanted to say anything at all I had to stop, get my phone out and type. Nowhere near the same.
Words can make or ruin someone’s day. So appreciate the ability of being able to speak and use it to be kind. Instead of texting a family member or friend, pick up the phone or FaceTime them. We all need it right now more than ever.