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Thursday, October 24, 2013

The stifling of independence

Two walking frames that I use. The one on the left is a very sturdy one which is best for around-the-house use, while the light one on the right is best for getting in and out of the bathroom.

It's something that's happened countless times in all periods of history and all cultures. It happens because people develop an illness where they lose mobility by degrees until they are incapable of critical faculties and management of bodily functions.

   I have such an illness, but I’m not quite at that critical stage. I’m close to it now. I'm inside a body that I can describe only as feeling like a peg that's being hammered into the ground.

   I'm not in the least interested in sympathy. I want to tell healthy people such as I was a few years ago something you probably won’t understand. “It’s only the wearer who knows where the shoe pinches” goes the old saying, and it's as close to an absolute truth as we get in this world of relativity.

   Not even the carer, even one like a spouse or partner, can quite understand the pain of dependence. They have their own pain, seeing their loved one suffer, and all that goes with being the one depended upon more and more as the illness takes hold, and steals so much from both.

   The problem with independence is that we take it for granted in normal life. From the moment we leave the womb, the quest for independence begins, and it is one of the driving forces of life.

   No normal human being wants to be dependent. The toddler screams that they want to do it themselves, whatever "it" may be. The adolescent may become a sullen monster and (we hope temporarily) hate these stupid parents who dare to restrict their freedom in any way.

   This is an annoying, often painful and necessary pathway to adulthood, and yet the human race depends on it for its development. The arts and sciences wouldn't progress without it. Adaptation is necessary for survival and that is what independent thought amounts to.

   In every human lifetime, except in the case of sudden death, independence comes to an end. When its loss happens slowly, there may be some time to adapt – to improvise, as I've constantly done, or use equipment to compensate for loss. Even then, the time comes when there’s no further improvising. Dependence on equipment gives way more and more to dependence on people.

   I suppose I should speak only for myself. I don't mind depending on equipment, because it just sits there waiting to be used, but having to inconvenience others (usually Tracey) is another matter. If she happens to be close by, I don’t mind asking for help. But to buzz her to come from the other end of the house for a petty need when she’s undertaking some task there is another matter.

   She's said repeatedly that she doesn't mind. I believe her. But I mind. I'll deal with it myself if I think I can.

   Just now is a good example. I want to reach my bottle of water, on the right side table. It's just out of my reach from this sitting position, no matter how far I stretch. My right arm and hand are useless. To get it myself, I need to go through a series of operations; removing the laptop from the tray, then the tray, then the small blanket, placing it on the table, raising my chair, reaching for the frame, then dragging myself to my feet, gripping the handholds of the frame, moving the half-metre to the table, picking up the bottle with my good hand, putting it on a corner of the table where I can reach it from the chair, turning 180 degrees and repeating all those in reverse so I am sitting back here to type again.

   There are a myriad of little things that you don't think of when you have two hands. I surely didn't. Try putting toothpaste on your toothbrush using only one hand. No cheating now. Cutting fingernails. Try opening many sealed containers. Just one hand now. Peeling fruit. Cutting up food. Doing up buttons or zips. Taking a photo. All are designed for people with two hands. Funny that....

   What about legs? From walking reasonably normally in 2010, I began to take Tracey’s arm, for the sake of balance. My right leg started to drag and I battled to keep it usable. Recovery work was undone by the next seizure. Fewer and fewer brain signals have been getting through and now the ankle and knee joints have all but failed. I abandoned the rollator/walker and replaced it by zimmer frame. Increasingly I have become more wheelchair-dependent in a house never designed for it.

   But leave those aside. My point is that with this condition, my dependence on those around me continued to increase bit by bit but has now sky-rocketed. To return to the original metaphor, the peg is being driven into the turf relentlessly.

   I now realise something more keenly than ever just what those myriads of people who have come before me had to deal with, and what's on the agenda for those coming after. 

   With increased dependence, dignity and privacy are eroded. It's inevitable.

   Every mature person over their lifetime develops their own code for each. These are not quickly or easily set aside, not after a lifetime of living by that personal code. At a formal dinner party some guest is unlikely to ask you loudly, “Have you opened your bowels this morning?” In a hospital, it happens daily.

   To survive, you learn to accept violations of that lifetime code. Questions about bodily functions are necessary. Being disrobed unceremoniously in front of a stranger can't be avoided. Having your body prodded and probed in mysterious ways must be endured. Rationally, it's simple. Emotionally, it takes longer.

   This is no criticism of anyone, including myself. No-one needs feel any guilt. It's just stating the facts of life for a dependent person. Forgive the elderly who rail against being patronised or not listened to. What they’re hating is that they’ve lost their independence, and know they’ll never get it back.

   I don't really know how a person enduring dialysis, Motor Neurone disease, Multiple Sclerosis or pancreatic cancer feels, because I can't. I'm not them. I can be sympathetic – maybe now far more than most because of my experiences in the past few years. The person who takes care of them lovingly has the best idea. I can't even truly know just how Tracey feels, though I feel guilty every day knowing she has to cope with me as I am. Of course it's not my fault, but it's impossible not to feel responsible in some way.

   But when it comes to it, it truly is only the wearer who knows where that shoe pinches, and no-one else in the world. The shoes of us all pinch somewhere, and all have no choice but to deal with their own sore spots.


  1. Good post, Denis. It really made me think and, to the extent such is possible, to understand. You have once again marshalled your thoughts and mastered your physical difficulties in a way that is ... in the traditional sense of the word ... awesome. Thank you for this glimpse of the meaning of loss of independence. PS. For some reason I had to enter my comment via my Google account; hence the Badgerbob (Wind in the Willows) user name. Cheers. Bob Lake.

    1. Badgerbob: I love the name!

      This is a letter I could have written to myself five years ago, but I suspect I wouldn't have really understood what I thought I was on about. I’ll be surprised if those with one of the conditions above, or similar, don't get it right away.

  2. Yes, an important message for us to hear, to be more patient with others, and hopefully not have to cope with oursleves - the loss of the will out of wilfulness in it's best sense. What I find hard to understand is why so many people who have independence of movement spend so much of their time recumbent in front of a TV.

    1. Good question, Trish. Answer: because it's there! What I am far more conscious of is how many people make their lives [and many lives around theirs nearby] a misery over petty things. The reason usually is that they have rarely in their lives had to face something of real significance.

  3. Such a wonderful post. You're stuck inside that body but somehow you keep managing to beat it in order to tell us things that are touching and fascinating and beautifully told. I take my hat off to you - which, of course, is easy with two hands

    1. Thanks, dear Z. I wanted to say so much more but there's only so long a rant people can take and how many byways I blunder into – and how petty it is of me to want to get my bottle of water without any real effort - and how wonderfully dependable and generous so many can be.

      It's all relative.

  4. quite a lady that tracy, not many people would be able to cope and understand your needs like this ,

    1. She is that. All her skills were more than put to the test today. They were pushed to the limit in the past 18 hours and yet she stayed calm and collected in the face of a great deal of provocation. I'll give her carte blanche to tell what happened in a guest posting as long as she's gentle with me....

  5. Just one thing: you obviously know that no-one is going to blame you for your illness; just don't feel GUILTY. We all know it's not rational, you probably more than most people, but the hard part is not to FEEL guilty. One of the things about being in a loving relationship is that the other person really wants to fill in the gaps and to BE the missing parts, whatever they might be. I'm sure you're not fighting this. "In sickness and in health" ... we might say these words glibly, as a matter of form, but we really mean it in a very deep sense, even though we didn't know it at the time in most cases. I know this from experience, as I'm sure you do too.

    1. Thanks Jenny. It's a lovely posting and true. If things were reversed I'd do the same, and so would anyone who took the trouble to read this posting and the comments.

      But I'd defy a person who's a loving care receiver not to feel guilty at times seeing their loving, uncomplaining care-giver woken for the third time in five hours to render much needed assistance. You have to read the heartfelt response below.

  6. Thank you Den for this - close to my heart.

    16 years into an MS diagnosis I grapple increasingly with this. It is vital, in the true "part of living" sense,

    A day like Wednesday, when I needed Ros' help to blow my nose, left me feeling hopeless and barely alive. I could grit my teeth - I had an unusual cold and consequent fever and weakness - and it has passed but that degree of dependence, day after day? seriously? Assisted suicide comes to mind and whatever the arguments are about it the point is that some independence is that fundamental to life and the sense of self.

    So each day, sick or healthy, we each do what we can, or like, or want to give us that sense. For the healthy that is often completely transparent. Tony Abbott, I'm sure, does not wake each morning and say "I must wreck something to feel human" For us sickies it is a more deliberate act. You, I feel, are here, online, to be alive. For me, it is Friday, I declared "I will go out today" "Where to?" asked Ros. "To live" I answered and before I read your blog.

    The independence see-saw has to have someone at the other end. You and I have Tracey and Ros. You so accurately describe the struggle "not to call" Not calling offers the satisfaction of the successfully, independently completed task and the sense of our dear one having had an instant of freedom but the other side of the coin is to fall to the floor and seek some response to "Why didn't you call me?"

    It is the inevitable, constant struggle and mental horror of Caring and Receiving.

    By the way I have a stick with claws at the far end and a handle at my end that closes the claws. So long as what I crave is within reach and not too heavy it comes to me.

    1. Thanks for your kind words, Dave. That see-saw you mention is exactly it. "I need help to do this [pathetically simple] task and I don't want to bother beloved with it. But, my attempt to do it myself can end in disaster." It seems obvious I call in the help, but unless you are the dependent one, you won't understand the strength of the temptation to take the risk.

      You and I are both care-receivers, and we well know that there’s a danger attention is focused so much on people in our positions that their primary carers are forgotten; that they’re expected to be content with living just for the care-receivers and not for themselves. I know many times Tracey goes down the street and solicitous questions are asked about me and hardly anyone asks her about how she’s faring in all this, when she’s taking the brunt of the handling of constant – never-ending! – tasks connected with the management of the person they’re looking after. In other words, the carer is expected to stop having an identity of their own and live through the other. This isn’t fair and in the end is destructive.

      This has always been worthy of a blog posting and the fact that I haven't written if might mean I'm doing the same thing.

      Hmm. I don't like the way these thoughts are heading....

  7. I wish I had written this, Den.
    There is something about the way you write about what is true, human and deeply personal, that does not elicit the slightest skerrick of sympathy. Instead, I feel only respect, and a sense of relief that illness, disability, and deteriorating independence - is being written about not only beautifully - but with enormous integrity.

    I am reminded of something by your metaphors of shoes that pinch and nails being hammered.I might have written this Egyptian (I think) proverb somewhere else as a previous comment on your blog:

    "Health is the crown on the well-person's head, that only the sick man sees."

    Thanks again, Den, for telling the world so wonderfully well, how it really is for so many of us.

    1. That saying is so true that it's appreciated only by the sick and those who tend them. I think it is of Sufi origin, which would possibly make it 1000 years old, perhaps Persian or Dervish; in the latter case, Turkish.

      Thanks for the generous words, Ros. As a carer, you know that side of the story as well.

  8. Oh dear, I wish I could say something meaningful in response to this remarkably candid post but really, it's all been said by the others! And so thoughtfully, too. When my mother-in-law went blind some years ago, and was coming to visit, I spent a day blindfolded just to try and gain SOME understanding of what it was like. And it was terrifying! Quite terrifying! Yet of course I couldn't really understand how it was for her because, of course, I could take off the blindfold whenever it got too much for me. The one thing I CAN say, Denis, is that once again you have reminded those of us who are fit and well, and whose significant other does not require constant care, NOT TO TAKE ANY BLOODY THING FOR GRANTED. Or at least to try. I shall always honour you as much for that lesson as for all the other things you taught me.

    1. What an interesting exercise – the blindfold I mean. I think every parliamentarian should be required to get about a rural city for a week in a wheelchair – no Commonwealth car, OK they can ring for a taxi but let then find one that can take their wheelchair! - use only available disabled toilet facilities and ramps. They’d be off their heads by lunchtime first day – but they’d be better people’s reps for it.


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