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Thursday, May 3, 2012

Reality bites 1: a half-remembered chat

It's weird. Today, I don't know where to start.

Usually, it's no problem. I just begin writing, but this time it's difficult. There are so many interlocking things I want to say without trying your patience or stamina too much. I've been lying in bed awake in the 5 am darkness wrestling with this, and I need to write something or I can't get it out of my head – which means I can't sleep. But I need the sleep. Catch 22.

So I'll just start and try to carve this into manageable chunks. OK?

On May Day, Tracey and I were out walking. I'd had a question in my mind for some time.

"Do you think I'm misrepresenting the state of my health on the blog?"

She paused for a little while before answering, but the answer was clear enough.

The reason I asked her was that I have had quite a few of what were to me odd reactions from people, some written and some in person, and so had Tracey.
"It's great to read that everything's going so well."
"You look fantastic."
"It's incredible that you're cured."
That last one really pulled me up. What sort of tangential universe is one of us living in? Cured? This thing has no cure.

Oh, I know that when friends come to my door they aren't likely to say:
"Man, you look dreadful."
"I see you can't walk straight, or can barely sit yourself down."
"You've got jowls like a prize bulldog."
"You're going to have to get a forklift for that stomach." 
(Well, a couple of my friends might, but that's OK. We go back a long way.)
I've conceded several times in this blog that when I'm settled and comfortable, I can appear to be fine. My brain's probably running on high revs, so it's relatively easy to create an illusion of near-normality. I know too that many people do see things but are polite enough not to point them out, and it's normal to focus on the positive – or, as we often do, talk of other things entirely, which is fine by me. Who wouldn't?

I also know I've been around far longer than some of the estimates that have been given to people or to us, and there are good reasons for this. But it means that in a strange way, it dulls or deletes the expectation in many people that I will drop off the perch shortly or that some sudden event will do it in two minutes, possibly starting right this second.

You see? Neither you nor I can find it in our hearts to process that, but it's right. Dead Wright.

So when Tracey said a clear "Yes" to my question, I can't say I was surprised. It was only confirming what was already in my mind.

"So what am I doing wrong?" I think I already know the answer to this, but I'm interested to hear how she puts it.

"When I read the blog, two things strike me, so they must strike others as well."

"Firstly, on the main part of your blog, it's nearly always upbeat and often funny, and this creates the impression you're always fully on top of things."

"Well," I say a bit defensively, " I take hours to write a few hundred words of any blog posting. I can think about it, change it when it looks too stupid, and patch over the mistakes a bit."

"And," she goes on, "in the other part of the blog, the What's New section where you do a bit of medical reporting, you tend to focus on the positive things and play down the others. I know you mention the negative ones and expect people to read between the lines, but they don't see what I see. You can't expect them to."

"So it doesn't surprise me so much when people meet me in the Supermarket and say how well it all seems to be going. They see you joking and acting just like you always did years ago on FaceBook before all this. A place like FaceBook is where all our local friends and relatives are, and a lot of your overseas friends. There's no lines to read between on FaceBook.

"And you don't go out much, so most people don't see you. You write on the blog that we're out walking, and the picture is we're strolling along like... normal people, doing normal things. But if you weren't holding my arm, you'd have fallen over a dozen times by now."

That's all too true.

"Sometimes I wish you'd do a parallel version of events on the blog," I say to her, "so people could see it from inside my head and also get a more realistic version from your point of view at the same time. But I don't want to impose that on you."

"There would probably be things you mightn't like me to say, either, about what I see and know at this stage of things."

She has a point. I probably wouldn't, and want her to change things, or not say them at all.

I always say she's the control freak. Maybe it's me.

But she's right. I need to tell it like it is. True, some people heavily in denial refuse to see what's there right in front of them no matter what, but most of the time, if you don't give them the whole story, you have to expect it will come back to you in a distorted form.

So, I better balance the scales from here on, especially now that things are changing with much greater speed.

More on what's really happening next time then. It's too late in the day for sugar-coating.


  1. Yes wrote a whole blog page about the difficulty of walking. You describe exactly how heavy and unresponsive your body becomes when you've had a seizure. You described the feeling of going through a seizure. You've told us you are having more problems all the time with balance, with your skin, with sleeping, with your weight. You talk about your worries about not being able to remember things. You say goodbye to your girls and let us know that you all know it might be for the last time.You tell us of your worries for Tracey and the burden you feel you have become. You tell us on 'What's New' the incredible let down of having another seizure and the knowing that Brian is still there waiting,acting,when you have felt surreptitiously happy and hopeful about the lack of seizures for a while. What is the matter with people if they can't get the picture from that?

    Some people just don't want to have to face any unpleasantness. They probably don't read the blog anyway (not that it is unpleasant -they probably just don't read stuff much!). Their minds are full of their own problems. Or they just don't know what to say. Personally I think that there's plenty of readable spaces between the lines on FB too. In fact I make an art form of doing so and of trying to pry further into motives etc heheh ,often wrongly, no doubt! But then I obviously just don't have enough else to do, heheh again.

    So -what kind of things do you feel you must tell people to convince them you are not OK? Sorry, that's a weird thing to say and I guess I'll find out the answer soon enough.

    When you are a carer of someone you love, you notice every tiny detail and become alarmed about them. The number of times I've been convinced that 'this is it -mum is dying NOW' and I want people around her to notice that if I'm not there she might not get enough to drink, or be uncomfortable but not be able to change her position. Or be in the undignified state of sitting in wet pants, and knowing it. Or be confused about where she is ,although she doesn't have dementia. I try to convince other people to go to visit her as I can't be there every moment, but no-one else cares as much as I do, so they just don't go, or rarely.And they don't want to hear about it, either. So apart from my long- suffering dear Michael, I am isolated in my worry.See, I'm finding an excuse to talk about it now, and this is really about you and Tracey! Quite often though ,in my concern, I see things as worse than they are. And though she is slowly dying, there's ups and downs. Near comatose states just vanish overnight and she's her lovely self the next day, but thinner and weaker. People have got tired of me saying 'mum's dying' or'my cat's dying' (they're both still here:)) I also know it wears mum out when I fuss, exacerbates the situation. I still occasionally fuss -it's my nature. Mostly I just try to have happy times together with her.

    I know it's a totally different situation. But also, people probably feel - what can they do, anyway? It's devastating for many people, but we have to carry on. Tracey has done such a great job of looking after the household and you, as you have yourself. You have lots of friends both locally and online -zillions! We're all very grateful for this blog, but surely most can also use their imaginations to fill in any gaps..

    Oh, and happy birthday for yesterday! I STILL think you're doing fantastically,even though I haven't seen you for a while and I know it's changing,but.. your writing is really good. Lots of enjoyment there.

    JulieM xx

  2. Hey Denis :)

    God I love how you write. I love what you share & I love the way you give voice to the stuff you're going through and your stories. You're so clear! I adore that clarity!

    I'd be certain that I'm not the only one who thinks this way about your gorgeous self. It's the strange thing about an online presence. You can't be too sure if the 'page views' translate to pages being read, or really gauge the reception of what you've written. I'd bet that the number comments you get are so small compared to the views your stuff receives. Whatever the reason is behind that, in a weird way there's lots of us out here, rooting for you & smiling when we think of you & feeling apprehensive when the next seizure or whatever rears its head for some attention.

    It's a strange & different community that we share here in the online world. Maybe the thing that we connect with 'out' here is your awesome cleverness & wit & smarts & intelligence &, oh, you get the idea that it's all stuff that's reflected in your personality & it's what you communicate to us. I admire you for this stuff - because I admire your 'awesome cleverness & wit...', and also because I admire that you're sticking with this thing of engaging in the cyber world & availing yourself to playing with new friends and finding new and interesting experiences.

    All that stuff, that personality & cleverness stuff, transcends our physical body. So, please don't think that I'm ignorant to, or making light of your physical changes. Not at all. I think it'd be a real shit to have to coerce one of my arms into cooperating to splash water on my face or to hold someone to help me walk. I don't know how you haven't gone totally mental from slowly typing your blog posts or responses! Never mind the fact that you persevere the frustrations & discomforts of these barriers to share your lovely self with us.

    I think this blog is about you. And it's *for* you. Thing is, I think, that you don't need to explain yourself to us or reply to us! Neither do you need to conceal stuff. It's up to you what you want to share, and how, and even IF! Of course, it makes sense that there is a relationship here between your super self & us readers. I think I'm trying to say something a bit philosophical - like one can't exist without the other... But that's just wrong 'cause it can & will & does! Argh! Anyhow - you're in the pilot seat. You're the one we keep coming here to visit. But you don't owe us, I think. We'll take what you give us, & we'll engage with you in a way that suits us too.

    All that being said, I (and I'm sure I'm not alone here either!) care about you. Like I said up there, it's a strange thing, this online world. I can feel an emotional connection with someone I haven't seen in real life. Perhaps you feel an emotional connection with us too & that's why you want to share more of your self. And perhaps that's an awful limitation of this online world, that we can't make even more of a connection.

    Anyway, be kind to yourself. And easy on yourself. We'll be out here, lapping up whatever you have to share.


  3. I think the tug of war between facing reality and choosing to ignore reality with regards to terminal illness is very complex issue and it will be nearly impossible to resolve. It says a great deal about human behaviour. I believe there are at least three angles to this:

    1. The elephant in the room – i.e. the “unwelcome stranger” – that people tend to/want to/hope to ignore, but that the significant loved ones/carers can never ignore. Those of us who have nursed or observed a loved one travelling along the terminal illness path CAN actually read through the lines. We know that it’s definitely not all sunshine and lollypops – no matter how the sufferer projects it. We also know that every minute of every day is precious, that deterioration is all too rapid and obvious, and that in order to get through the unpleasant reality, the sufferer often needs to focus on any small positives they can. Distant or ever hopeful readers/acquaintances may interpret these positive projections very differently from the reality, but there’s precious little we can do about that. People see what they want to see. Death is too taboo for most of us to contemplate.

    2. The possible therapeutic value that you provide to yourself by writing about topics other than the horrible actuality of your “unwelcome stranger”. Rightly or wrongly, I like to imagine that focusing on describing past and/or humorous events to your readers gives you respite from the reality you are facing, as well as keeping these historical events alive forever. If you don’t write them down now, there may not be time later. And my, what a great shame that would be. On the other hand, if you instead chose to focus on describing the actual day-to-day hardships provided by your "unwelcome stranger" in every blog posting, it would probably be more difficult for you to maintain.

    3. The entertainment and comfort that you perhaps unwittingly provide to your readers. I think many people like reading your blog for its educational value, its humorous snapshots of your life (past and present) and its informed commentary on mainstream issues and the treatment you are receiving.

    I have tried reading and have quickly tired of reading many blogs. But yours? Yours holds my interest. Your formula works. I hope it remains on the Internet forever.

    Sissy Aiden's friend.

  4. These are wonderful responses and I thank you all very much for taking the time and trouble to reply so thoughtfully and perceptively. My temptation is to reply to them point by point but the afternoon would be gone if I started to do that. I may well return to them anyway, as there were points you made there that relate to the things I intend to bring up as this unfolds.

    There's one point that's been bugging me and I do want to mention it before this discussion goes further, if indeed it does. Looking back on it after waking up, the conversation I had with Tracey on our walk is a bit skewed. In an effort to compact ideas, I've injected into it more of my own reaction to what we were saying than how it actually went.

    Now I read again how I've put it, it occurs to me that Tracey was making general points about people's reactions to the circumstances we are in rather than criticisms of the style and content of the blog itself, which she hasn't suggested I should change. I'd like to correct that impression if it's one anyone's getting.

    Well, I'll ask her anyway. Her recollection of events and discussions is eleventy thousand times better than mine! The last thing she'd want to do is for me write anything in a different way to what I do, or it wouldn't be me, would it?

    Now, to matters other than my toenails and the blog! Again, I'm very conscious I haven't talked about anything anyone's said specifically and you know me.... I love to put my oar in.

  5. Dear Uncle Den (and Tracey),
    For what it is worth, I don't actually think you could do this any other way....I agree with Tracey, that it can appear as if you are as you always have been, and yet in our hearts we know this is not the case. But I love to read your blog, to learn about your life - to sneak a peak in that window that is your life, and feel so lucky to be given the chance to get to know you both... We know there is a dreadful reality to face. But let us enjoy the wonderful moments you still have to offer. Keep it real. I do think that is important. But don't become clinical. Keep allowing us to join you on this journey. We know the reality. So keep it real, but don't close the curtains. We enjoy peaking too much. XXXX Anne

  6. Hi Dennis

    Well, an odd thing happened to me yesterday. I felt sodden with grief about your situation. Although we have never laid eyes on each other I felt totally connected to you by a potent bond of disembodied energy. It was strong, distracting, heartfelt. My point, apart from saying that this feeling took me over for most of the day, is that it's not possible for us to cut off from what your situation really is unless we don't want to take it in. I was so moved by your email, your luminosity, your strong self embedded in physical decline; I saw & felt it all there in my body-mind for hours. I guess it says the ending is coming. It also says we care, that the cords that tie us to you are real, but invisible.

    Looking forward to whatever else you can tell us.



    1. Joanne: I was very touched by this, though the truth is, it's a situation we don't get close to understanding till we encounter it, and there's no way in this to stop and do a second, third or nth take. There's just one. Thanks for your thoughts and concern. Nothing I can say here adequately expresses what I feel towards friends and family who are with me.

  7. Denis, having read all the above comments, I really have nothing to add, as everything I feel about all that you write, and therefore about you, has been said. We know the truth about your future. For me, I look every day for you, not only because I love reading everything you write, and am greedy for more, but I know that one day, sooner or later, you won't be popping up after a long sleep. Denis, we don't have to read between the lines to know this.
    So our resounding message is simply write - when you can and whatever is on your mind. There is so much for you to tell and for us to hear. For however long or short time allows, I join with all the above, and the hundreds who don't write but think it, you have our ears and hearts. By simply being you.

  8. Dear All Who Responded,

    Again, having re-read everything you've said, I feel keenly that I haven't given each the feedback I would want to, but let me just assure you that every word has been read and absorbed, and appreciated. I still may get back to some individual points that I do want to talk about, but I can't be sure of that. Each day I sleep more and accomplish less of what I want to do.

    The one thing that stands out to me is that if I'm not mistaken, each one of you, like Tracey, has been deeply involved one way or another as a Carer, and I admit to a sense of guilt that often the attention and empathy from outsiders is focused on the patient, when it's the Carer who has to make incredible sacrifices to play that role. I've seen heroic work performed by Carers and I know something of what it has cost in Tracey's case - and in Julie's as well, and my sisters in looking after our mother - to be put in this position. Carers are taken for granted because they often have no choice, even though they do what they do without complaint to the patients and they do it out of love.

    You all know this but few who haven't taken on this role can appreciate it.

    It's certainly something to write about on the blog.

    1. I don't do what I do without complaint! I've been whinging for years. But I love my mother. If I think too much that I'm 'badly done by' I only have to think what she is going through -and she never, ever complains. It's worse for her -I'm young (comparatively). I'll have a life after she's gone. Precious life. Even if it is to walk through an underground carpark and look at the weirdos doing their shopping -I think ,what a miracle, I'm so lucky. I'm alive. I can walk! Just rectifying that comparison. It's different for Tracey. Every situation is different.


    2. You've had - and continue to have - a huge responsibility with your Mum. I don't think you complain too much at all. But the one thing that's certain is, it's all relative. [Usually in more ways than one....]

  9. I think I understand what you are saying Denis. We as readers get to see the Denis view or at least the bits you choose to share & from a light humoured viewpoint. You were telling us this time that the reality for Tracey (& you natch) is quite different. Her world as a carer is filled with "stuff" she never imagined she'd be doing & you wish you hadn't been the one to provide the opportunity. You are telling us that the reality is harsh whichever way you look at it with no happy endings as a reward for the sacrifice & hard work.
    Maybe my comments here are too black & white because there are also so many shades of colour beautiful hues when you add love into the equation. But at the end of the day nobody signed up for the job not you not Tracey yet love compels & that's that. Perhaps, just for a few words, you were letting us peek through Tracey's eyes.

    1. Well said, Debbie. No, your comments aren't too black and white. Thank you.

  10. Hi Denis,

    Well, you sure stirred the pot! I'm sorry to hear that your birthday wasn't as good as we'd all hoped, but I trust you have improved since then and are back with us, making the most of what you have.

    If we say to you, "You're looking great!", it's because you look a hell of a lot better than we expected. Actually, I thought by now I would have attended your funeral ages ago. And yet, although you have this monster in your head, when I see you, your face glows like an angel's, and inspite of your obvious infirmities, you are not bed-ridden and can do far more than I even imagined you would be able to do at year 2.5. Also, I expected your mind to be long gone, like others I have known who had the great misfortune to have Brian take up residence in their brains. But here you are, writing coherently, with wit, depth, compassion, and intelligence. I have also come to accept that you don't want people to see you any other way than when you are at your best. So we are left with the impression that things are okay, given the circumstances. I haven't seen you any other way.

    So Denis, if you want us to see you differently, you'll have to lose your mind, take to your bed, and waste away. I don't see you doing any of this. I know you're suffering a gradual decline, and I've shed many tears over this and said many prayers to a god I don't believe in. That god seems to be answering some of my prayers. You're not cured and won't be, but I continue to be amazed at your capabilities and I'm sure your doctors are equally, if not more, amazed.

    1. Well said, Joan. And who doesn't want to be seen at their best? What's the point of having visitors on a day when you can't wake up and have a bad headache? I often have visitors (whom I love and enjoy) and then collapse in a heap afterwards. Michael could tell them a few things about what I'm really like:)So probably we all put on a good face for visitors. Especially someone with a brain tumour who wants to enjoy his friends 'normally' for a bit longer. Denis and Tracey,your real friends know what is going on, and the others don't matter. Wow, what a topic!!

    2. Yes, very good comments. I do admit being concerned about the possible directions of deterioration [and I know that I've expressed it a little obliquely before]. I'd write about it except that there is also a point going beyond which may be too hard to take for others dear to me.

  11. "Glass half full, glass half empty" Whatever way you look at it there's still liquid in the glass. You are like most of the people who are so bloody strong it is a joy to watch you .. and then there's that little drip down the side of the glass which say "Oy, I'm not so good at the moment". I don't care .. I like you. And if I choose to see you as "good" then it will be my sorrow when you go and kick the bucket. Your timing is up to you and the monster.

    1. That's interesting. I like straight talk. To some extent that's where the timing lies, especially for those who will die because some other part of the system fails.

      But when it's the brain, the core of existence; the id that's under attack, the timing may well be less up to me, and the burden of responsibility for action on my behalf will fall heavily on others.

      That's the part that does sit well with me. While I have sanity and a reasonable sense of judgment, I would dearly like to be given the privilege to exercise it.

    2. Is this where you look at one of those ditzy computers which have voice recognition and will type out with remarkable clarity the really, really smart brain thingies with which you either entertain us or sadden us? I'd like to contribute some little something towards retaining you for a while longer, please. :-) So please lean (whichever side is up to you) towards keeping that id burning for our benefit?


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