I have been a quadriplegic wheelchair user for forty years. Sometimes life sends its message in a bottle… and I do not mean the 1970s pop song by The Police.
Not long after you break your neck in three places (in a not-swimming-well-enough accident) people tend to ask a lot of questions. Top of most people's list is, “doctor, will I walk again?” Not me.
By the time I moved from the Emergency Room at Edinburgh's Royal Infirmary to the Musselburgh Spinal Injuries Unit (now closed after merger with the Glasgow unit) I had no need to ask about not-walking. I was reasonably sure of the prognosis because a friend checked a dictionary after I overheard a Consultant doctor (almost) whisper the word “tetraplegic" during the morning ward round a few days after I did not die on the beach.
Ward rounds involve a group of medical experts -- senior and junior doctors, nurses, maybe an allied health professional or two, a psychologist or social worker sometimes -- huddled together near the bed in which the patient lies. Typically (at least in 1980s Scotland) the experts talk about — but not with or to -- the prostrate figure literally screwed into a traction bed known as a Stryker frame. They are no longer used in spinal injury rehabilitation, fortunately.
Before I reached the spinal unit, 10 miles east of Edinburgh, I was reasonably sure I would never walk again and that my fingers would be paralysed forever. It was only during my ten months in Edenhall Hospital that I came to understand I would also be permanently paralysed in both bladder and bowel. Once you know that fact, the inability to walk inhabits a broader context. It becomes just one of many physical changes to which a quad like me must adjust.
In case anyone wonders, I have never actually wanted to be paralysed. Not walking is, however, not the most challenging consequence of the injury. At least not in my experience.
I use a wheelchair to move through the world because I cannot walk under any circumstances. It’s not a choice. I use a piece of equipment which the fancy jargon labels as “assistive technology” or AT.
It’s a necessity. Not a lifestyle decision.
In the forty years since my accident I've used my AT to go places, some of them very ordinary: to work, shopping in Cameron Toll supermarket in Edinburgh (just like lots of other people who lived in the same area) or a favourite restaurant with my friends, the theatre with Martin, art galleries with anyone who’d put up with my untutored eye. The sort of activities I engaged in before my accident.
I've also gone farther afield in my wheelchair since my accident, and some of those places are not so ordinary: snorkeling over the Barrier Reef in Far North Queensland, dim sum in Guangzhou in Quandong Province, reaching the summit of Sugar Loaf Mountain in Rio de Janeiro (by cable car and wheelchair access ramp), the Colosseum in Rome via an elevator that probably wasn’t there when Maximus Decimus Meridius took off his masked helmet to astonish the murderous Emperor, Commodus.
I do know, by the way, that Gladiator is an epic sword and sandals boys adventure movie; not a documentary. In case anyone is worrying.
My point is that my AT wheelchair is an enabler, not a disabler. I've met new people in places I had never been, and done ‘stuff’ I had never done, before I became a permanently paralysed wheelchair user.
My point is this: life goes on. One does what one can (is what I believe).
I do not mean to suggest, however, that life is easy for me (and others) everywhere and all the time. There have been and still are discriminatory, systemic barriers that deny us equality of opportunity and inclusion.
That's why we have a social model of disability. It's why we need to educate, agitate, and organise. It's why we need individual and systemic advocacy. It's why we campaign. Because, just as the long-dead German political economist wrote,
“The philosophers have only interpreted the world in many ways. The point, however, is to change it.”
It may indeed be true (as President Obama told us) that "the arc of history is long but tends towards social justice”. But history doesn’t move itself. It is made by people taking action — sometimes or frequently contested by other people. So, if we want to see a progressive arc, we need to set history in motion through organised action, unity of purpose and a clear objective.
Some of the consequences of my paralysed life are not as easily addressed, however, as changing the world irreversibly through concerted collective action.
My wheelchair reasonably adjusts for my mobility impairment. So far, so ordinary.
My paralysed bladder and bowel are somewhat different. They have minds of their own, so to speak. And both physiologically and metaphorically I cannot bend them to my will even though I believe I have a brain the size of a planet.
There is no AT ‘reasonable adjustment’ in this area. There is only bowel and bladder management.
Both of those skills were drilled into me (and others) in the Musselburgh Spinal Injuries Unit by Spinal Injuries Senior Consultant Peter Edmond CBE (urologist to Her Royal Highness Queen Elizabeth II and member of the Royal Company of Archers -- Her Maj's ceremonial bodyguard when she visited Scotland).
Me and Mr. Edmond did not always get on during my ten months in ‘his’ spinal unit. But I listened very carefully to what he told me about attending to my bladder and bowel management. Doing so explains (in part) why I've only ever had one urinary tract infection in forty years of being a quad.
One. And I feel deeply guilty for allowing that one to happen.
Which brings me to my point today (you may be relieved to hear … at last).
In May of this year, apparently, the brand of enema I have used to manage my paralysed bowel’s evacuation was removed from Australia's Pharmaceutical Benefits Scheme (the PBS). I missed that news.
Three months later (when I needed to re-order my supply of Bisalax, the bisycodal enema I have been using for almost all the years I've lived in Australia) there was virtually no stock left anywhere in this great southern land of ours. I had maybe fifteen yellow vials left in our cupboard. I use one vial every two days or so … a month's worth. If nothing goes wrong.
Since then we've been scouring the land (and other lands) for any supply or an alternative brand: our local pharmacist in Canberra, every other pharmacist in Canberra, every web site we could find in Australia, suppliers overseas (including an American company who actually ships stock from Qatar at 5 times the price).
We could not find Bisalax in Australia for love or money. Most suppliers proclaimed “Out of Stock" on their web sites. Some advised … “Ships in October". We'd have run out by October so we ordered a different brand of bisycodal enema from Qatar.
As you can tell from the picture at the top of this post, I didn't make a purchase that anyone would call ‘like for like'. Both the yellow vial and the larger plastic bottle contain 10mg of bisycodal, the active ingredient. My usual brand comes in a 5ml solution. The alternative comes dissolved in 20 times more non-active fluid.
I think the term might be … somewhat diluted. Like Noah's Ark and the flood.
This next bit may be too much information.
We injected my paralysed bowel this morning with enough diluted bisycodal to fell a discontented bull elephant tearing across the Serengeti National Park. To no effect.
Three diluted bottles. If you must know.
So — reluctantly — we used up the very last yellow vial of my usual brand this morning because … to quote Margaret Thatcher out of context … There was no alternative.
About ten days ago I found an Australian supplier with replenished stock. I was told delivery would take 5 to 7 days. Well, that meant 3 to 5 days ago.
Nothing yet … and no Plan B.
To speak the words of the last refuge of the nincompoop … we'll see what tomorrow brings.
The fact is, however, I can't help thinking of the wise words of Robert Burns in his ode, ‘To a Mouse’. Scotland's Immortal Bard wrote this:
“The best laid schemes o’ Mice an’ Men / Gang aft agley,”
Rabbie Burns was not wrong.
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