Diary of a day: 9:30 AM

Yesterday got away on me and I really did not get another chance to diarise (yes, literary pedants, I know this is not a word). I jotted down a few notes on my phone as I went and should have enough to finish the story.

Received a telephone call from my son, Jeremy. He is 17 today and it really is hard to fathom how fast time has gone. I know it sounds cliched but it does feel like only yesterday that he was an innocent little toddler. Now he towers over me (in my chair I finally understand what it is to be short). He is long and lanky with wild blonde hair and is secretly proud of his biceps and chest. Perhaps not so secretly. He always wears a singlet and I keep hearing stories of him performing striptease. Anyway, he calls me to let me know that he passed his driving test and is now the proud possessor of a P class licence. This is good news, as it will ease the burden on Elly to perform taxi services. It is also scary news, as I can remember what it was to be a teenage driver. The statistics on road accidents does not lessen my concern. But I think he is a sensible enough kid. I hope so.

As I noted yesterday, I spent until 10:30 AM blogging. My catheter bag is full again (yes, I know, I spend an inordinate amount of time focused on that stupid bag). My associate, Andrew, is going above and beyond the call of duty. He is employed to help me deliver theology units, but has also become a personal carer while I am at work. I shall have to arrange an additional levy for his services. He helps me out in the bathroom and at least pretends that it is no big deal. His wife is an occupational therapist so I think it is more than just pretend.

Back at my desk I should be preparing for class but I can’t keep my eyes open. I make some effort but eventually I rock back in my chair, ostensibly for pressure relief, and fall asleep. so here is one of the really cool things about my new life. I can find a chair wherever I go and the tilt function means that I also carry my bed with me.

Diary of the day: 7:00 AM,

I am woken most mornings by the sound of numbers beeping on a keypad and a door clicking open (our doors are automated with touchpads to enable me to get in and out – and this has the added advantage of ensuring my wife does not have to get up to open the door for the carers). We normally start at 7 AM but I was expecting Parvene at 6:45 AM to get things going – an earlier start so I can get to work a reasonable hour. She is late. When she comes in at 7.00 I express my frustrations. Too forcefully. I’m immediately mortified at my own response. It is true she has a habit of being late but she works hard and deserves more courtesy. And I am better than this – at least I should be.

Blankets and sheets are stripped back, I am rocked forward and a sling is placed behind my back and between my legs. A hoist is rolled under my bed, connected to the sling and up I go. Getting me properly seated on the commode is something of a skill but the ladies have had plenty of practice. I am wheeled into the bathroom, pushed over the toilet and Rachelle gloves up. Gloves, gel, enema, bum; that is probably more information than you wanted. The obvious question is, how do you get used to this? Weirdly enough, it very soon becomes nothing simple routine. You might say I have the good fortune of someone to talk to while I go to the loo. If anything, I wonder how my carers bring themselves to put on the glove, but they also say it is just routine. And an important routine. Without their efforts I am in danger of an accident in my chair, and the thought is not appealing. The work of a personal carer, like that of nurses, is not glamorous but it is glorious. There is something deeply spiritual about being prepared to help people get rid of their shit,

From the toilet to the shower and Parvene gives me thorough clean. She is clearly upset so I apologise again and give her a cuddle. Yes, I am nude in a shower and she is fully dressed – now soaking wet. But this is normal (not the upset or the cuddle – the showering!). The shower is another seemingly invasive experience but it is surprisingly routine. Bodies are bodies and we should not be too precious about them. Anyway, Parvene has cheered up and is making jokes. To be honest I can’t catch everything that she says. She is Pakistani and sometimes we only three quarters understand each other – but I laugh anyway for her sake. From the shower, hoisted back into bed. My catheter is attended to; I still get blood and puss in the wound where the catheter goes in through my stomach to the bladder. Not at all painful but can stain my clothes. I am dressed and hoisted again into my chair.

This morning I am in a rush (late start and all). I have breakfast on the run and take off out the door. It is 7:52 AM. We have made record time – it normally takes about 1 ½ hours to get me up and then another half an hour for me to have breakfast and the girls to tidy up. We have skipped a couple of steps. I have that trendy stubble beard. But we are done in just under an hour and I am free.