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Friday, January 3, 2014

On Transverse Myelitis and Cleanliness

When you are handicapped, cleanliness can become an obsession. As I am sure you will know, blokes are never the best at toileting, and they have a core belief that any little messes are always someone else’s problem. Their mother always did it; OK she grumbled a bit, but she was always there. Later their wife or partner did it; OK she grumbled a bit, but she was always there. It’s a sort of narcissism, probably not even noticing that you have made a mess, or if you have seen it, believing its not your job to clean toilets. I remember when I was a med student, living in a shared house with three other males, there were always little niggles about whose job it was to clean up, or about who was the last person to use the toilet to ensure it was their job. Another solution was to have a girlfriend to stay over. No, I won’t go there…
Hey, having Transverse Myelitis, I know how complex it can be to clean up after yourself, and it is even worse when you are in a wheelchair. So what do you do if the previous occupant has been a typical ‘It’s not my problem’? You can get offended or angry. In hospital you call a nurse to come clean up before you use this particular toilet. Mmm, are nurses employed to clean toilets? You can storm off on your wheelchair and find another toilet that is cleaner, and leave the other one for the next lucky person to find and clean up. Or you can take charge, and just fix it. I have now become an expert toilet cleaner, and I take great pride in cleaning the toilet before I use it, and then great pride in cleaning up afterwards to ensure that the next person does not have to do a thing.
I am told that in Japan the profession of toilet cleaner is an honourable one, and great pride is taken in sanitary procedures. So beside the lessons I have learned from Karate, I now claim to be a member of the honourable all-Japan society of toilet cleaners. Professor of Child Psychiatry with an OAM as well as an MHa-JSTC.
Seriously, I have been put into service at home, and have a particular use when we have visitors – especially small children, - especially small male children whose direction finding is not yet fully formed. At work we have loads of students attending seminars in the Department of Psychiatry, and I am put to good use after one of these. The ratio of young males is not that high, but even though they may be future professionals (or perhaps because they may be future professionals), they seem to think they have a God-given right to mess up the one male toilet in the department. I do sympathise a bit at exam time when everyone can be a bit anxious. Bit actually that is no excuse, and us males can all take on the job of cleaning after our own little messes.
It is not just the toilet. Surely at home when you wash your hands, you clean the sink a bit afterward, put the soap back in the dish, and put the towel back on the rack. The public version of this might be to clean up after the wall-mounted soap dispenser dribbles on the bench (which it does – probably has male origins), make sure that your throw of the paper towel actually achieves its objective and finds its way into the waste bin, and if the tap splashes all over the place, dry up the area. I am not actually on guard, you understand. I don’t actually mill around outside the toilet trying to guess who thinks their mother or their girlfriend will clean up after them. But, unfortunately I use the toilet several times a day, always having some urgency, and that agoraphobic fear of letting myself down in public. So, I notice these things. Am I being obsessive? Maybe…
Whenever we drive to places, I have to try and get there a little early to ensure I can use the toilet and have some certainty about myself for the next hour or so. Its all getting better, but I am still struggling with it. Flying interstate or internationally is a trial in part for these reasons. So we use the valet parking if we can – just so I am nearer and don’t have to walk too far. I try to pre-book seats, so that we can go to the metal detector and frisk area as soon as we can. A delay here, and I can get into trouble. Those irritating people inspecting my bag and ensuring I am not carrying bomb-making material, or have not been near a quarantined farm can interrupt the process and cause problems. Once in Sydney, the delay (“Have you ever had this done before, sir? Sorry for the delay; I just need to put this little piece of paper in my special machine. Won’t be a moment.”) caused me to have a small leak before achieving the Qantas Club. Damn. Stupid officialdom…
OK. One final story. I also, of course, have to go to the toilet after a meeting, before going on to the next one, or before going home. I am a member of a state committee to do with Child Services, and they meet on the 17th floor of a skyscraper in the middle of the city. Toilets are just past the lifts and down the corridor a few yards. Good. I went after the last meeting, and since I got TM, it always takes time to be sure I am OK. As I entered the bathroom, the light came on as I went past a sensor. Clever idea, saving money. So I sat, and after 15 minutes the light went off! Pitch black; I could have been down a mine. The bathroom, being in the centre of the building has no window, so no natural lighting. OK, don’t panic, I am sure someone will come into the bathroom in a minute… No…. OK, how do I clean up when I can’t even see where the toilet paper is? This is not just gloom, to which the eyes can recover; it’s really dark. So, my iPhone has a light. Easy. Well, not easy, because it keeps going out every 15 seconds, and I really need three hands. Ah well, I managed. How do I check the toilet to be sure I meet my own standards? I can’t. I grope for the door latch, work out how it opens, and step through gingerly. I then walk carefully the 10 steps or so toward where I remember the sink to be. Miracle happens; I have obviously triggered the sensor, and a blinding light appears. I smile, and check myself out in the mirror while I wash my hands. Now, I really should go back and just check the toilet. Nah! On this occasion (perhaps a little angrily), I decide to leave it for the building’s MHa-JSTC. I am sure they have one.

I am due to go back to the building for another meeting tomorrow. Must remember to take the iPhone with me; I just downloaded the Night Light App. I am sure that lasts longer than 15 seconds.

(Part of a chapter from 'Taking Charge: a journey of recovery' - available in hard copy or download at or as a download from Amazon Kindle Books)

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