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Thursday, February 28, 2013

Getting it wrong

All the discussion generated by my previous blog posting has made me think much more deeply than I imagined; about what it is to be the carer, the close relative and/or friend who is the visitor or written correspondent, and the way I come across to them.

    I'm not one for the blame game, but I see now that I am part of the difficulty for visitors, or even those who know me only through my writing. It's not just the other person. I'm sure I give a dismissive impression about myself sometimes that cues a visitor or correspondent to turn quickly to other things.

    Sometimes I may not want to discuss in any detail my ailments if, for whatever reason, I'm feeling unwilling. It may be as simple as 'I haven't shaved this morning and feel like I look like something the cat dragged in.' The visitor, of course, really doesn't care about that and nor should they. It's minutiae that's not even on their radar. But you know how it is. Ego's a pain.

    As long as the air is filled with chatter it seems all right. Silence is awkward. Silence or breaks in conversation aren't tolerated in our society. They're taken as cues for action – e.g., that it's time to go [maybe it is, maybe not] – or just to fill the space with ... anything.

    In other words, silences can be minefields for clear communication – and in the end it's no-one's fault.

    And sometimes it's a matter or plain can't. In wrestling with something that badly needs discussion, I can often be my own worst enemy. The words just come out wrong – and this gets worse the less I am sure of the topic, and, to be perfectly frank, the way this disease has progressed. So the other person gets it wrong.

    If I give wrong cues, of course it's misinterpreted. If others give wrong cues, the result's the same. Miscommunication. I can patch it over a bit in written communication, but not face-to-face.

    What I'm scared of is that people reading the thread concerning visits will now be so afraid of not 'getting it right' that they won't communicate at all. That's the last thing I want.

    In my present state, even being sent a long email daunts me a bit. The brief email with a sincere 'no need to respond' [I probably will!] is often all I need, and most appreciated. But don't make it so short that you leave out something in your life that is important to you. If it's important to you, it probably is to me.

    I'm not as I was even 12 months ago. I'm less stable in all sorts of ways. More than ever before, I need far more quietness and solitude [where I do my best communicating], and the necessarily flexible routine I have. 

   My best therapy [which in my case means "stress release"] is composing my blog stories, even though they now take ten times as long. They are also my way of communicating with the world, especially my family close friends, even though, as I said in almost my first blog piece in 2010, that idea is anathema to some.

   If few read them, that's OK. It means they're interested in the topic, however bad my story. If this interests you, read the comments on the previous story. They are better than anything I've written on the subject.


  1. Where to go Denis? I have to confess to becoming a MUS junky (I also confess to an obsessive use of acronyms to save typing but I'm now squandering that advantage)

    When something is well written, perhaps a little quirky, but carefully composed and considered I read with a visceral pleasure. MUS gives me that pleasure and it also lures me to try the same. Thank you for that.

    So I am pondering the question of visitors but also drawn to the whole To Blog or not to Blog question.

    1. This is me continuing the same post - my way to avoid losing lots of writing on a pad that won't cut and paste easily.

      Visitors. Love them and hate them though a little tongue in cheek. Silences? With a sleepover visitor lately I was delighted by their ability to quietly read as I wrote. Some of the time.

      But a shorter visit? Yes, the conversational fire needs to be stoked and I just find myself hoping there is some fuel we can find that pleases us both. I find an urge to be outrageous - to say something a bit shocking to crack the mould. Surprisingly often it works and yields unexpected results.

    2. And then there's blogging. Two motives come to mind. Many more for sure.

      Web log gave us the word and the rolling public diary is deep in blog genetics. I think that is why the deathbed blog ticks so many boxes. Of course people want to know and One to Many is an essential, practical answer. Impersonal? There is an essential selfishness in those who clamour for personal attention. We feel the same with the folk that demand their own personal holiday snaps email rather than demeaning themselves by joining Facebook.

    3. The other reason explains why I am lying here at half past midnight doing this. I like the word visceral to describe a pleasure that can come from certain reading. It can also come from writing, perhaps implying an audience, and perhaps therefore evoking a blog.

  2. "It's not just the other person. I'm sure I give a dismissive impression about myself sometimes that cues a visitor or correspondent to turn quickly to other things."
    This has been the next really important truth-telling in this whole conversation.

    The truth is, we ALL do this, Denis - Carer and Care-Recipient alike. We don't want to tell everybody, everything. We are selective about what we say to whom, and when. And sometimes we simply need, and want, a rest from ourselves. Mostly, it is simply easier, and convenient to say, “I’m fine. Dave’s amazing. We’re doing really well under the circumstances.” None of this is untrue. It is all true at some level. If people are relieved to hear this answer, then that is enough. Unless the question strikes the chord, the questioner is willing to listen, and there is the time and privacy and trust enough, then nothing deeper is required. The horse can stay on the dining room table undisturbed. But still it is present. That’s ok.

    I doubt there are many people (you're an exception here) who has any idea how hard and complicated and unrelenting it is for me. (You have, after all, asked the good questions, and taken the time to listen to the answers). When someone asks me, "And Ros, how are YOU doing in all of this?" It takes me aback. It is such a rare experience to be asked how I am because, I think, I always appear bright and happy and “normal”. When asked that question, my immediate sensation is one of wanting to weep. It is such a relief, or something, to have someone want to understand what it’s like to be inside of me.

    So, my brain whirrs at a hundred miles per second, and I find myself rapidly assessing: does she really want to know the answer? Is she up for the answer? Is he/she (rarely "he") just being polite? What's going on in her own life to be asking this question? Do I want to get into these feelings right now in this public place? Is this person going to interrupt me and start telling me their own story whilst I'm spending precious energy scrabbling around inside my heart and psyche to answer the question with as much integrity and insight as possible? That’s the worst feeling – to be truncated in mid-feeling.

    Talking about really hard, painful, terrifying aspects of our lives takes time, not just an hour over a cuppa. And it takes someone asking a real question - and being secure enough, and wise enough, and insightful enough - and ultimately courageous enough, to really and truly want to understand. Only then can that really, truly, real question pierce the heart of the issue so that the honesty and insights are free to flow. This probably needs hours, not minutes.

  3. I can't understand why anyone WOULDN'T want to ask the 'real questions' since then they have a better chance at real communication -so much more meaningful to a visit ,to a friendship. As long as there is no 'barrow pushing' happening:) But truly ,there are people who are kind and well meaning who just aren't good at knowing what to say. Babbling, as I am wont to do at times of nervousness, may become a response. You babble 'wrong' things and silly things, then.
    But also, as Denis said, it is hard to get the balance right -to know when/how much to talk about how he or Tracey (or Christian) are doing, without either seeming to ignore the horse, or riding it to a state of depression for everyone. There is no script, for any of us, for these situations. Also I am afraid of being seeming to dig,to be over personal.You want your space ,too.

    Thank you Denis for this blog, for your wonderful sincere conversation here,Denis, Tracey, and this caring group of friends.

    Julie M

  4. Julie M - you've got it right as usual. Denis, thank you but I didn't have a problem with any of your responses. You have both been under unimaginable stress and the questions I ask myself every time are: Will this be of blog interest to Denis? Is it too personal or not personal enough? Will it help, hinder or upset Denis or Tracey? And, with 32 posts on the last blog, are we taxing you too much? So, we are still here with you, but will try and be brief.

  5. As you say Denis, things have changed for you. Perhaps the kind of interactions that sustained you 12 months ago are now too exhausting to sustain. Some people may still be responding to Tracey posting of April 14, 2011, in which she said:

    "The people who bring dinners, drink all our red wine and talk about uni shenanigans or nerdy stuff, who bring silly or fun or interesting conversation, as if we are still the people we were 14 months ago....they are a breath of fresh air. I love those visits. I have stocked up - two doz bottles of red. You know who you are :-)"

    We all want to be the visitors you want to have. If things have changed, it is good to know this. Thank you for this frank discussion, and to be even more frank, please let us know when the time has come for only very close friends and family.

    1. Thank you Joan. Yes, I can't keep up with all the things I want to, including responding to many comments which I love doing. I don't mean I won't be responding to any. Just as time and reason permit.

      There's something I want you to do for me, Joan - a special task you won't find unpleasant, I think, so we'll try to find a suitable time for when you're next in town. I'll contact you by email to explain it. It's not too mysterious.


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