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.