Monday, 8 February 2016

What a difference a wig makes!

Thank you all so much for your encouraging comments after my heart to heart on the last post here. Did me lots of good to share all that, and even more to know it had hit a nerve with one or two others too. Suffice it to say you're an excellent therapy group :) and now at last my wig referral's come through, and I LOVE IT!! so much better than my little hats. just don't stand too close to the oven door apparently, or you might melt.

In this post I also want to look at another feature that's brought big changes to my life over the last year, and that's the issue of communication.A year ago, what took me off to A&E was primarily that my speech was getting very muddled - so much so that I  thought I  might be having a stroke. I remember the last straw was an inability to say  "Mushhhhhhhhhhhy peas!"  I could hear what I wanted to say but was unable to form the word. I was also suffering numbness in my right arm and hand. They popped me in a scanner, and sadly the results were worse than we feared - 2 brain tumours, in the left side of my brain. The swelling round them was pressing on the relevant bits of my circuitry - especially on the 'speech and language centre' in the brain right side. Steroids reduced the swelling and within days my speech was back to normal. A year on, however, and it is now much worse than it ever was, both in terms of written and spoken speech. It varies hugely of course. At good times I'm not too bad at all.  But occasionally I cannot get  thoughts and sounds to coordinate at all. Especially if I've just woken up.

Yet again,it was a wonderful nurse from the Day Hospice who had the time to say 'I don't know if you mind thinking about this, in which case just ignore it, but it would  be useful for me to find out what helps and what doesn't if someone's having to work hard at communicating. Is is helpful, say, if we try and finished off your sentence?

Good to be made to think  about that. I seemed to conclude that really I didn't mind either way if my listener tried to help me finish (sounding a bit like a 2 Ronnies sketch!) or let me struggle to find things if I could. What I did mind, though, was pretending that they'd had heard and understood when they hadn't, or clearly pretending  not to hear, maybe because they were embarrassed to have to ask. And that one has been back to rebuke me, because I've done it to a friend. I'm afraid I couldn't face returning her phone calls, so I just didn't do it. One reason I won't attempt to speak on the phone now.

What frustrates me most about the state of my speech? I'd never have realised this, but it was obvious when it came to me. I can't tell a joke any more! To tell a joke you need speed and timing, neither of which I have now. Learning that I can just shut up, and not be the  centre humming along in every conversation, is hard. When a few of us are talking, too, learning that I can just sit back and listen rather than have to get my thoughts in is new. And I often have to make a conscious decision that my pearls of wisdom are not really necessary on everything.

I find myself thinking a great deal about Stephen Hawking these days. Apparently, his ability to use his voice is down to one muscle in his cheek which still responds to him. One muscle! So what happens when that one muscle finally goes? I can't see  him lasting the week to be honest. Because it seems to me that what has kept him going for so many year is his ability to communicate. That goes, what has he left? No reason at all to stay alive.

Compared to Stephen my ability to communicate seems so easy and fluid. My ability to type is still here, although it takes me a long time now. What happens is I get everything down pretty quickly, but when I look at what's on the page it's gobbledy gook. I can still decipher it but only just. So I go  back painstakingly through each paragraph and correct. Pride makes me cross when mistakes get through! On my newly gifted iMac though, its so much easier to see and to read, it gives me joy every single day. So long as I have a  way to communicate, that what gets me up and determined. And technology has made that possible. So - thank you Blogger; thank you Facebook; thank you beautiful new iMac. With a bit of well planned effort I can still speak, Or put another way, I speak, and therefore I am.


  1. Fantastic to know we can all sharpen our communication skills,apparently research estimates 55% of communication is non verbal. Thanks for the reminder. Love your blog. Cheers. Annette

  2. Thank you so much for sharing with us , helping us to understand and yes you look wonderful bless you Debbie

  3. You're amazing Debbie - such an encouragement, and example to us all.

    Having been to a talk or two by Stephen Hawking in my former life as a physicist... His speech synthesiser, and his 'interface' with it, isn't all it seems when you see him on TV. It is customary, at the end of seminars, to open it up for questions or comments. It takes him and absolute age... So long that you wonder whether he's died and no one has noticed yet... And then you typically get a one word answer - maybe, yes, or no. After one or two questions, it all just seems too painful and embarrassing, and everyone gives up.

    The seminars are interesting, but given how long it takes him to formulate a one word answer to a question, one does wonder how long it took him to 'write' the talk... Or whether someone did it for him and he simply 'presses' "Go" with that cheek muscle?

  4. Dear Deb
    How good to get another blog from you - you truly are an inspiration. Your perseverance is just amazing.
    GREAT to see your wig - it is so natural looking. (Being a 'scarf fanatic' I just love your bright butterfly scarf too!!)
    My prayer for you is that God will give you the necessary patience and peace as you struggle verbally.
    Keep on keeping on with the written word - it is so appreciated.
    With lots of love and prayers for you, Mike and the family.
    Hugs from Ireland. Ann x

  5. Lovely wig :)

    Also I pretty much consider your pearls of wisdom essential in pretty much all topics!

    P.S. please get a Stephen hawking voice machine. It would be totes hilarious ;) (I use totes ironically, just so you know. I'm not that street :( ) xx

    1. I totes use totes and obvs in conversation all the time. They snuck into my lexicon without warning. Curses!

    2. P.S. Shouldn't that be 'totes hillaire'?!?!

  6. I used to get pulled up for being patronising and saying yes to someone when I didn't know what they'd said. It's very humbling when it's pointed out. It should probably be compulsory for everyone to watch Ricky Gervais' Extras or read your blog to understand how our need to avoid embarrassment can be hurtful and selfish, not to say dumb. Thanks.

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  8. I guess a lot of people just agreeing or saying yes when they haven't understood could be embarrassment , but more likely extreme sensitivity to your situation.
    Love you to bits and I hope I haven't fallen into this trap��
    I look forward to seeing the wig, looks smashing. xxxxxxxxxxxxxxxxx

  9. Good post. Good wig. I am glad you can communicate, because I learned something new. Evidently, Billy Crystal's "I hate when that happens" sketch was actually imported from Britain. It is so hard to buy domestic these days!