And so ...
I return to the post-Christmas, post-New-Year, post-holiday world of normality. My normality. It's the first working day of the year.
Of course, I tell myself, I'm not wholly normal (whatever that's supposed to mean). I prefer the idea there's no such thing as normal. I believe -- although this may be a convenient fiction with which we try to console ourselves -- we are all different. Each one of is unique. But part of the whole. I suspect, however, we're less unique than we think we are.
I'm not complaining. But, for the purpose of today's exercise (if for no other reason) allow me the possibility that there is indeed no such thing as normal. We're all abnormal in our own special way (to borrow from Tolstoy's idea about families and unhappiness).
I'm not entirely normal because of my C5/6 quadriplegia. My paralysis comes from a spinal cord injury following a swimming accident more than thirty-six years ago (June 1984 to be less than exact about a date which was -- once upon a time -- seared into my memory).
I broke me neck in two places. Maybe three, now I think on it.
Out of curiosity I Googled the date. It was Sunday, 17th June 1984. Two Tribes by Frankie Goes To Hollywood had just gone to No. 1 in the UK 'hit parade'.
But back in my Australian here and now today has been my first day at the office after the end of year holiday. It started in the normal quadriplegic's way. I need assistance to evacuate my paralysed bowel, to shower, to dress, to sit in my wheelchair. On a 'good' day that can all be done in ninety minutes. On a slow day it can take more than three hours.
Today was a bit slower than middling. My partner helped me from our bed onto my commode chair. The truth is my partner does most of the work as we haul me over a perspex transfer board onto the seat. She wheels me into the shower room and over the lavatory seat. She injects a bisycodal enema into my rectum using a plastic syringe and an external catheter. That irritates my lower intestine which reacts to expel the foreign matter and with it the human waste of this sixty-three year old man. Typically the expulsion processes -- the excretion -- takes thirty minutes.
One can almost set one's clock by it. But not today.
Some days are slow. Some days one's Scottish diet or not drinking enough the day before slows down the process. Some days -- my 'bad' days -- it takes a second enema and at least an hour. Today was one such day; over an hour in fact. And then one showers (which I can mostly do for myself) although my partner almost invariably joins me under the hot water after fifteen minutes. Sometimes, I slide open the shower room door to call out to her because she has gone back to bed to sleep some more. But not this morning.
After showering and drying we push me back to the bedside and from there we roll me off the shower chair onto the mattress. It's part roll, part leap (although "leap" suggests something much more vigorous than the reality. It's more like a human-size rag doll being cast aside by God).
My partner dries my paralysed penis over which she fits a self-adhesive sheath -- like a condom with a hole in it and a short, firm tube protruding from the top. To this tube my partner attaches a 750 ml urine-collecting bag which she fixes to the the front of my left lower leg by means of two velcro straps -- top and bottom. Then my partner puts socks on my feet and trousers on my legs and we transfer me from the bed to my wheelchair with its German-made power-assisted wheels. I have to push the wheels to make the chair move anywhere but the battery assistance gets me up or down almost any hill in ways I could never have achieved years ago. My partner puts shoes on my feet. And this morning I pulled on a red polo shirt. That, at least, I can manage for myself.
Today, from beginning to end, the process took three hours, more or less. More probably. One of my longer sessions.
But my quadriplegic morning doesn't end there. Over the years -- on anywhere between a minimum of three or four ocassions in a 'good' year to a dozen or more in a 'bad' year -- bitter experience has taught me that the whole bowel evacuating process isn't necessarily over simply because you believe it to be so.
Shit -- you see -- happens. Even to paralysed intestines.
That's a fact of a paralysed life I've learned too many times to not be cautious. I don't go anywhere or do much for at least an hour because if what I think is an empty bowel turns out not to be empty I find that out within an hour of getting into my wheelchair.
On those ghastly mornings -- mercifully few but still too many -- an unforeseeable and unstoppable evacuation will occur within the first hour. If I'm as lucky as one can be on such unlucky mornings I might get five or ten minutes warning. I start to sweat profusely. There is the telltale aroma that something wicked my way comes. And on those days I rush back to transfer onto the bed and then onto the commode chair and then over the lavatory seat again where my partner begins to remove the trousers which are almost always soiled with shit by this point. Sometimes it's not too much ... what is the correct amount, I wonder, for an adult male? ... before a great cascade of slimy shit tumbles into the water in the bowl.
More often than not, though, the shit has already been expelled into one's trousers. They are manky -- a good old Scottish word. The shit spreads over your legs as your clothes are removed. It smears your urine collection system (sheath, bag and straps). And there you sit, caked in shit, waiting for the unruly bowel to do its worst, to finish the process over which you have no control and cannot stop. Fortunately it never takes long because most of what can be excreted is already out in the world; on your clothes, your body, the toilet seat and sometimes the floor. There is nothing a quadriplegic can do to predict or avoid the indignity and mess because these bowel 'accidents' -- as they are euphemistically known -- come with the territory of being paralysed from the chest down.
Usually, though, we don't talk about such matters in polite society. And we certainly don't write them down in a New Year's blog entry. But, like I claimed at the start, I'm not normal. So ... because one has no choice ... you and your partner (if you're fortunate -- as I am -- to live with a partner) simply re-start the process of cleaning you up in the shower.
Pleasant, it is not.
When you break your neck on a beach in Scotland in 1984 they tell you -- eventually -- that you will be unlikely to walk again; ever. They explain you will never again have finger function or arms that work right. They teach you how to force a pen between your paralysed fingers and learn to write again. They tell you that you will have limited sensation below the level of your injury and will lose the ability to regulate your body temperature. They tell you about autonomic dysreflexia which -- they emphasise -- is serious quadriplegic shit (of an entirely different sort) because it can kill you in a nanosecond. They tell you much more -- all of it valuable to know if you plan to live an engaged, active life. And why would you not?
But no one tells you in 1984 that when you're a sixtysomething Chief Executive Officer of a $13 Million, non-government, not-for-profit charitable disability support provider employing eighty-five people and supporting over two hundred people with disability and their families there will be days -- paralysed, as you are, from below the line of your nipples and in all four limbs -- when you will shit in your pants like a six-month old child dressed only in a nappy.
You must learn that truth for yourself.
Fortunately today was not one of those days.
And that makes me think, "thank someone for small mercies". Happy New Year Douglas.
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