I'm back here, in my "electric chair". I've been on a trek to the bedroom, one which I make many times a day. I drink a lot of water, you see, in the belief that constantly flushing my overworked kidneys helps preserve them for that little bit longer.
This trip becomes a greater challenge daily. It demands micro-planning on a scale that the bloke I was five years ago had not the faintest ability to imagine – a person possibly like you, but I don't presume that, because you might be in a wheelchair or confined to a bed, or you might look after someone who's in this position.
The trek. Firstly, I must discipline myself not to wait till the last minute. That's not as simple as it seems. There's always some last thing to do on the computer. Tracey knows this all too well when I'm supposed to be going to bed, and it must drive her bonkers at times, because "last" turns into second-last, and something always goes wrong at that critical point that takes more time. I constantly make resolutions that it will never happen again, but whaddyaknow.... Anyway, let's come back to the point.
It's time to take another loo break. Like, now! But, firstly, I have to put the computer to sleep. That is, my laptop Hal, with a sentience of its own, primitive as it is. It takes an eternity for the laptop to close its one big Cyclops eye while I sit squirming.
Just as I pick it up by its corner with my one good hand, I see that the space for it on the little table beside the chair is occupied by a glass of water. I sigh, put the laptop back on the tray on my knees and move the water to clear the required space. Good. Hurry. Laptop gripped firmly with just enough strength in the fingers, my arm swings across like a tiny crane and settles it neatly into its spot. Then I place the tray on top of it. Hurry.
Now, I must elevate the chair until it's high enough to help me stand upright. It's like an ejector mechanism except that when you're in a hurry it seems like snail's pace. The walker is close enough. Aided by this lifting, I struggle to my feet.
The left leg does all the work. It gets me high enough to lock the right knee into position. It's as if that knee has only two modes, on and off. Locked and unlocked. That's not quite true but it's close.
Now, to grip the walker handles. The left is no problem. I depend on it not to be one. The ease with which I grip the right depends on how long ago the last seizure was. It was barely five minutes. The hand wanders around jerkily and alights clumsily on the handle at last.
With the left hand, I move the errant fingers – that's most of them – into where they should be on the handle, and tell the hand to grip. Aloud. There's a remarkable reason for that but sorry, I'm in too much of a hurry to explain. I haven't even got under way yet. The hand locks on.
I lean on the walker with both arms and put the right foot forward, with the arms taking its weight. My arms are now in effect one of my legs, doing its work. If I put the good leg forward first, it's bad strategy. It means I must drag the right, pulling it along like Quasimodo, or the guy with a gammy leg I remember as a kid. Everyone called him "Stepper". He dragged his leg every step of the way. Not I.
I walk gripping the walker firmly with both hands, full concentration, putting my worst foot forward and bringing the left up to it. Then right foot forward again. It's as cumbersome as it looks and not quite as shaky, but it's the best way. Trust me. I'm a doctor. OK, so not a medical one.
Concentrate only on getting there, not on the relief it's going to be when you do, Dr Bozo, because it does strange things to you to anticipate. Just get there.
Right. I'm at the spot, but mustn't start anticipating. I have to turn the walker around, to get a secure hold on the bar with the left hand. The right wants to retain its grip on the walker but I need both hands free once I'm balanced. It's been locked into that grip so long that it's not responding to command. I have to let the fingers release reluctantly of their own accord. It's a bit like those of the person in the movie do when they're trying to retain that failing grip on the cliff-edge twig.
I undo the robe, one-handed of course. Thinking about not thinking about the relief to come is as fatal as thinking about it. The knot slips, Dieu merci. The robe falls open. One handed, the pants are dragged down. Now be careful, some things need two hands if you want controlled action. Garments are to be kept clear, right? The right hand has to be called into the operation, even with tremors.
Too much information? I know you didn't ask, but bless you, you've stuck with me this far and you'd help if you could. Maybe?
As I said, this is an operation that demands balance, so – no hands on the walker. Why don't I just sit down? I have my reasons. I don't want to discuss them here. Not now. I stay on my feet. I don't fear a seizure as I used to. I anticipate better than I did.
Whew! All done. Crisis averted. Ablutions performed. All's right with the world. Decency preserved. But I have to tie my robe, with only one good hand. I have a method. I get it done.
Now to get back to the lounge. The activity has brought on a seizure. I am close to the bed, so I can sit on it till I recover. The right leg is more likely to collapse just after a seizure, and the right hand will have little grip on the walker. The arm will be weaker too. Give it a few minutes.
When I feel the time is right, I stand up, and start the journey back. Going round the corner from bedroom to lounge is most dangerous. There's more transference of weight between feet, more chance of knee collapse, so it's concentration all the way. Don't hurry. There's no need.
I'm here. I shuffle backwards square on to the electric chair and sit, as gently as possible. I have to pick up the controller, but it's in the right side. It hasn't occurred to the makers that the right side of the body might be paralysed. Would it have been too hard to have a left-side socket as well? So it seems. But again, I have a work-around.
I can use the failing hand as a hook to pick up the controller. I get it close enough to the left hand to transfer the controller and press the button, and sit in relative comfort again. I put the tray on my knees, and gather strength to crane the computer back into place in front of me.
Hello world inside the laptop, until next trip to the bedroom. It will come soon enough. Too soon in fact.
Ah me! So well I recognise this tedious yet ever-needed traipse. Not to mention the risk of a fall!ReplyDelete
Would it really rock your socks, and everyone else's, if I bragged about not having had to do this for nearly three years?
Some folk may wear their hearts on their sleeves but my externalised organ is my bladder. A plastic bag strapped to my leg (keep it hidden!) is connected to a pipe down which the refills pour.
The biggest fear was always of a fall and that prospect is now in the distant past.
Other external organs? Hard to contemplate a similar bowel arrangement - too messy. Bionic eyes sound (look?) cool. A mate with a bionic ear is so easy to have lunch with. When will the brain transplant be perfected?
Thanks, Dave. The fall is a very big consideration. Things went seriously bad for me after those two big crashes I had. Now it's all about risk management and ordering priorities, as you know only too well.Delete
Socks well rocked. And your description of the solution will be very valuable for many with long-term physically disabling conditions. This is where our circumstances differ, though it may well not differ so much for future GBM patients who can reasonably expect longer lives. Surgical procedures are out for me and likely to remain so with my rate of tumour progression.
Brain transplant - fascinating to contemplate, and a bit scary. Who knows the consequences of putting 'old' brains on 'young' shoulders, as it were? Maybe starting from scratch is best.... Or we could end up with a Davros-like being. Ooo-er.
Brag away Dave! For me, the best part of the three week cycle is the 24 hour urine collection and the not constantly emptying a bottle for a whole day.ReplyDelete
I thought the prosthetic leg action would get a mention. We were only talking about this yesterday. The only reason the walker is still in use is that Den swings his leg from the hip and locks his knee backwards in a hyper-extended position with each and every step, in the same way that I imagine a person with a thigh-high prosthetic leg would get about.
I guess he was in too much of a hurry :-)
Call me Long John Silver, mateys. Or Drop Crotch Wright? What did LJS say? "Them that dies'll be the lucky ones!"Delete
I remember that oath of his from 50 years ago when I read Treasure Island. It always made an impression on me.
Wow Denis, that's not at all easy is it? Hate to sound selfish and hope this doesn't come out wrong, but thank you for writing through all of this.ReplyDelete
It came out exactly right, Jackie. Thanks.Delete
Even though I know this story (in another guise) intimately, I was entranced by your telling of it. And it is a story which the blow-by-blow details are rarely ever written. But it is important that they are. How, otherwise, is most of the rest of world ever going to get to know what they don't know?ReplyDelete
Nice work, Dr (aka Bozo) Wright. xx
I think they are worth the telling, for those who want to understand. Others put up with far greater challenges every second of the day. We'll never know, most of us, Dieu merci, what a young person who finds him/herself made quadriplegic, maybe suddenly, has to deal with.Delete
Hey, less of the 'Bozo' Wright, young lady. When I say it, it sounds ... different. :)
Always almost in as much awe of your attention to detail in the descriptions as in the execution of what you are experiencing Denis. Thank you for the 'inside' view. I'm actually holding my breath as I read, contemplating what it must be like...willing you to get there in time!ReplyDelete
Thanks Briar – I suspect everyone has been in a similar position at some time, which is why the responsive chord – even minus the painfully slow march to deliverance adding to the excitement.Delete
Such an excellent piece of writing, Denis,I was sweating from the beginning of the fourth paragraph and can't tell you how relieved I was when you got to the end, mission accomplished. I would have commented earlier but had to get to the bathroom :) Have a better day today I hope. TrishReplyDelete
You were relieved, Trish! I was even more so. Thanks for the kind words. Coming from you, that's very gratifying.Delete
Hello Denis, i´m from Chile, and I have read your history in the newspaper.ReplyDelete
Congratulations, positive energy, and don´t believe too much in the doctors and medicine. Continue believing in yourself, the intuition and in your inside energy.
A big hug from Viña del Mar, Chile.
PD: sorry, my English is not perfect.
Your English will always be better than my Spanish. :)Delete
I'm not sure how much is too much, but I do believe in what I regard as good doctors and good medicine. I'm blessed with the best. My medicines are the least I can get away with.
I always regard myself as knowing my body best, along with Tracey's observations, but that doesn't mean my judgment about treatment is best. Sometimes I've got that completely wrong.
But it's true that you should listen to your own intuition. Sometimes that insistent little voice is trying to say something vital.