The real question is … how much can one person live with? I’ve often asked that question over the years. It seems that each time I have finally come to terms with the latest thing, along comes something else.
We lived at Tindal until I was almost four. During that time came the aforementioned arrival of my sister Rochelle which was then followed by the arrival of Leanne and a move to Amberley Air Force Base outside of Brisbane in Queensland. The first year and a half after our move to Amberley, which I have nick-named the “year of hell” was probably the most difficult, the one with the most far-reaching affects, physically, emotionally and mentally. It changed who I was as a person. The “rug of life” was well and truly pulled out from under my little feet and suddenly I didn’t know who I was anymore. Sounds pretty dramatic doesn’t it? Well, in many ways, it was.
It was just past my fourth birthday. We hadn’t been at Amberley for all that long when I was taken to an appointment with a doctor. I don’t remember a tearing great lot about this appointment. I remember the layout of the doctors office, having the circumference of my head measured and sitting on the floor, ostensibly playing with the toys provided but mostly listening as Mum and Dad discussed my situation with the doctor. I don’t think they thought I was listening. Thing is that I am always listening, even when it’s seems that I’m not and even when I was a child. I didn’t understand what they were saying but I did understand that it was about me.
Very shortly after that appointment I woke up a different person. I’d been taken to the Brisbane Childrens Hospital the day or so before. I remember being in quite a large ward. There was another bed to the left of mine and a door to the right that led into a hallway which led to a kitchen. I was always a pretty cheeky kid and I got my hand slapped in that kitchen for trying to pinch a bit of food off a plate. Naturally I ran back to my bed crying. I was only four afterall.
Didn’t know why I was in hospital but I trusted that Mum and Dad knew what they were doing and it seemed like a holiday in some ways. Like it was something special. The next day was special. That’s the day that I changed. I have, on several occasions, been described as being like two people. It was nothing so dramatic though as say a “split personality” for example. Nothing like that at all but it was the beginning of a kind of separation. It’s hard to describe I think. There never
was anything tangible about it. It’s more like, from that day on, I locked away parts of myself to protect them. I started not to trust anyone or anything and, as a result, felt very isolated for most of my life but it was better than having that “rug” pulled out from under you.
The first day wasn’t so bad. I woke up from the anaesthetic, groggy as you would expect, to find Mum sitting on the right side of my bed. She looked quite upset and worried. That was an expression that I was to become quite familiar with. Next sensation I felt was an odd tightness on the right of my stomach. Didn’t hurt, just felt strangely tight.
The first time I saw my new accessory I was just curious. I didn’t know what it was or what it was for. In years to come I nicknamed the new accessory Plastic Percy. Yes, it comes from the old saying about men “pointing Percy at the procelain". Not terribly original I’ll grant you but it serves. At four it was just that strange thing on the right side of my stomach.
Click on the thumbnail to see a scanned copy of a letter that Mr McGuckin - who created Plastic Percy - wrote.
I have some vague recollections of Mum being shown how to change the strange contraption on my stomach or some such and throwing a big tantrum halfway across the childrens ward because we’d been told that the nurses were going to make a tiger walk across the room that day and I was going to miss it because I was going home.
I don’t remember this but I’m told that when we finally arrived home Rochelle threw a tantrum because I had a Plastic Percy and she didn’t. Frankly, had I known the trouble it was going to cause, she could have had it. You can find more information about Ileal Conduits on the net but the short version is that, during the surgery I’d had that day, a piece of my ileum (part of the bowel) had been removed and used to connect both ureters straight from my kidneys directly to an opening on the right side of my abdomen, thereby by-passing my bladder altogether. The reason for this was fairly straight forward. The Spina Bifida had caused nerve damage to my bladder. I had no bladder control at all and, at the age of four, I was still wearing nappies. The opening created in my stomach is called a Stoma and I wear a specially designed bag, stuck to my stomach, to collect urine from my kidney. I have no more control over Percy than I did over my bladder but a bag is easier to wear than a nappy – especially at my age!!! There is a tap at the end of the bag which I use to empty out the urine collected. So, I stand up to pee! I can whip it out like the boys.
Getting to know Percy though was, as I said, the most difficult part of my life. As you would expect, it changed me. The bag would often come unstuck and need to be changed. This wasn’t helped by the fact that I used to leave it until it was very full. Mum tried for years to get me to keep it empty. In my defence though I have to say that since I’d never had any kind of bladder control before I never understood the importance of keeping the bag empty. I’d worn nappies for all those years before. I didn’t understand that you had to do anything with it. It just hung there, on my side and it didn’t seem to do anything ... except get full.
In the early days, changing my bag was a full on event. One that was the cause of much stress for Mum. I had to lie on my back for the whole thing, usually a bed somewhere but sometimes a table or just somewhere flat. The used flange and bag had to be removed and the old glue completely cleaned from the skin around my stoma using a special cleaner called Saxol. I used to like putting some of the Saxol on a piece of cotton wool and brushing it over my arm. As the alcohol in the Saxol evaporated it used to leave a cold spot on my arm. Next, two kinds of flanges, with holes in the centre had to be glued together. One, round and flat that would sit directly on my skin, the other shaped like the inner wheel of a car tire that would hold the bag itself. Once these were glued together they were then adhered to my stomach with the central opening lined up with my stoma. After that came the Leukaplast tape which was placed all around the flange and the surrounding skin for extra holding power. Finally the bag itself was hooked onto the top flange. It sounds a lot easier than it really was. This procedure would take about an hour to achieve and time of day was irrelevant.
We also tried a support belt for a while too. It would attach to one side of the flange, sit around my waist and then hook onto the other side of the flange. I hate support belts. We also tried overnight drainage bags - one end of a catheter would be attached to the open tap of the bag, the other end to a much larger bag on a stand that sat beside the bed. Hate those too. Always afraid the damn things will get all caught up and twisted through the night and make a mess.
One of the problems we had to overcome was waiting for the glue to dry to a tacky stage before it could be adhered. Both the flange and my skin would be painted with the glue and then we would have to wait. The problem was that there is no control with my stoma. It constantly squirts out urine. So quite often the glue on my skin would get wet before we could adhere the flange. This would mean we would have to start all over again. We tried holding just a piece of cotton wool over my stoma but it would get stuck to the glue and this would interfere with how well the flange would stick - another reason to start again. This problem was eventually solved with some short lengths of stainless steel tubing courtesy of my Uncle Max. We used to stuff one full of cotton wool and place it over my stoma while the glue was applied and we waited for it to become tacky and then the new flange could just be passed over the tube and stuck in place. I used to hold the tubing in place over my stoma while Mum got the clean flanges ready.
Other times, many times in fact as I was growing up, I would have ulcers around my stoma. Sometimes there was just one or two, other times they could be quite bad. Mum always knew when I had them because they would make me cranky and depressed. They hurt. So often, during the changing procedure, a 10% solution of Mecurachrome had to be applied to the ulcers before the bag was attached to the flange. When I had the ulcers the bag would be removed from the flange and Mecurachrome applied to them several times a day.
That first year and half or so after I got Percy was very hard for me and for Mum and for Dad. Mum and Dad used to argue a lot because of me and Percy. Especially early on when Percy was being changed almost every day. There were always dishes of soaking bags and flanges in the laundry, 10% bottles of Mecurachrome and all the bag related paraphernalia in the bathroom and arguments between Mum and Dad and it was all my fault because I was born wrong.
This is how I felt for most of my life anyway. I acted out as a child not understanding why I wasn’t good enough but knowing that I wasn’t. I spent most of my life blaming myself for wrecking Mum and Dads life. I never got really angry about the bad things that did happen to me in my life because
during the “year of hell” I had come to believe that I deserved them. It served me right for wrecking my parents life. Took me most of my life to get over this but, as I mentioned earlier, the day I got Percy had some very far reaching effects. When I say most of my life I mean up until just a couple of years ago. There is the odd vestige of it that still exists but, for the most part, I’m kinda over it now. I just choose not to forget it because I don’t want to forget the lessons it also taught me about life and about how you treat other people.
The ultimate effects of that year and half changed who I had been. I felt betrayed somehow and yet, at the same time, as though the betrayal had been a fair exchange for whatever my crime had been. I had gone from a bright, happy, totally curious child not at all afraid to talk to folks and ask questions to one who became afraid of everything, especially people and I absolutely came to hate attention.
It’s the common belief of some that I like to be the centre of attention. The truth is that there is the very odd occasion where I don’t mind it but on the whole, I dislike being the centre of attention. To me, being the centre of attention is nothing but a cause for fear. This comes from the year of hell but it also comes from being poked and prodded by doctors, nurses, radiologists, the surgery, the x-rays, the injections and IV’s, blood tests and numerous other procedures etc. that I went through. I had no privacy growing up. There was not a part of my body that was not poked or prodded in some way or another, sooner or later. I developed a fear of needles and I developed a fear of attention. To me … there was no such thing as good attention. I’m still not sure there is. I’m learning to deal with it better these days, even like it sometimes, I’ll even step up to the plate when I have to – like at my 40th birthday this year - but all the same, I’d still rather avoid it. Whether physical or emotional, doesn’t matter.
Starting school didn’t help either. It’s mentioned several times in my primary school reports that I would not speak up in class, preferring instead to whisper in my teachers ear. I will give you a confrontation if you push me hard enough and it’s no exaggeration, nor is it bragging, to tell you to duck real fast. My temper really can be that bad. At school I became the quiet, shy kid too afraid to say boo to anyone, locked in my self-imposed misery I spent nearly all my time alone. At home, my frustration with my life would finally come out, sooner or later and I would throw some king sized tantrums. Even as a young child. One tantrum I’ve been told about and that seems to stick in my head is the day when, I was about four or so, I pulled a venetian blind off the bedroom window and knocked over a chest of drawers twice my height.
There are still quite a few pleasant, and funny, memories from our time in Amberley – like keeping the other kids awake laughing when we were supposed to be taking our afternoon nap at kindergarten. The teacher wasn’t very happy with me that day. On another occasion I took myself off to the kindergarten and tried to convince the teacher that Mum had told me it was okay for me to pick up my younger sister and take her home. Well that wasn’t exactly a lie. Mum had told me I could but I had gotten things all confused somehow and she hadn’t meant, take myself to the kinder and get my sister by myself.
I’m still kind of fond of Henry Mancini’s Baby Elephant Walk and Moon River. Mum and Dad used to have some good BBQ’s back then and they were two of the songs that would play in the background. They’d invite a bunch of other RAAF folks from the base around for a BBQ. I lost a tooth at one of those BBQ’s. It’s also where I tasted my first prawn cracker. Mum and Dad would make all the food – Mum’s mean cook. She can cook up a storm and so can Dad (he makes the best BBQ onions). There was the time that a koala, up in one of the gum trees in the back yard, peed on Dad. We all stood around laughing ourselves silly at that. He wasn't very impressed though. One Christmas “Santa” brought us a tent, which Dad duly pitched in the back yard for us, next to our sandpit. Then there was the huge roll of thick rubber that Dad brought home one time. He laid it around in the back yard and made “roads” for us to ride our tricycles on.
On another occasion I had the proverbial scared out me sneaking out the back gate. There was only open bushland behind the houses along our side of the street and we weren’t supposed to go out the back gate by ourselves. One day, for reasons I can’t remember, I was sneaking out the back gate when there came an almighty bang! I didn’t know it but Dad and his team were working somewhere not too far away. The explosive blast had come from the dynamite they were using. Dad was too far away to know what I was up to but the timing couldn’t have been better if they’d tried. It scared the crap out of me and I ran, screaming the whole way, back to the house and never tried again. I remember now … Dad and I had once gone for a walk around that bushland out the back. It had been a nice experience … well, except for me putting my finger into a hole in the ground and Dad telling me I shouldn’t do that because you never knew what could be in it (you know, spiders and the like). I think I’d just wanted to go for a walk like we had that day. It had been nice to spend time with Dad.
There are plenty of nice things that happened while we were living in Amberley. Oh, and a few not so nice ones like, losing my big toenail in my tri-cycle chain and electrocuting myself. I really wasn’t trying to do that. I’d been sent to my room for another tantrum but while I was sitting there I found a bobby pin. I still am eternally curious about stuff and, getting over my self-pity, I really wanted to know what would happen if I stuck the pin into the electric socket beside my bed. I found out pretty quickly when I was thrown backwards across the bedroom. Mental note: never do that again!!! Of course, I then got into trouble for eating all the ice in the ice-pack on my hand.
I wasn’t a bad kid really and we did have lots of good times but the problems were always there, lurking in the background. There were too many frustrations for a kid to deal with. Sticking the pin into the electric socket really was just a case of curiosity (I'm a little more careful these days) but a lot of other things were a direct result of my frustration with that other part of my life.
Amberley is also where I have my first memory of my bowel problem coming into play. Nothing especially big. I just remember one day when Mum made me sit on the toilet and try and do something and she wouldn’t let me off the toilet until I had. I sat there for a long time. Seemed like ages to me but it was probably only about half an hour. I couldn’t do anything though. This was just the beginning, for me anyway, of a long saga, involving my bowel, one that I’m still trying to sort out. See, the problem with my bowel is that, because of the nerve damage, I have little sensation or feeling in the area of my backside. I don’t have a clue when I need to go to the toilet because I don’t feel any urge to go. There’s a few things, tricks, I’ve learnt over the years but that’s a later part of the story.
