Please, sit down, grab a drink and a chocolate biscuit and prepare to travel into the memory of the Infantile Idiopathic baby who’s all grown up. What she is, who she is, the experiences she’s had and all the reasons why……..warts and all.

You know, it took me many years until I finally understood; understood why you, the parents and children with AIS often sat there in the waiting room with such a look of fear and shock on your face. I’d had it easy, I never heard those scary words ‘you have Scoliosis…..might need a brace/surgery’ nor did I have to adjust to the fact their was something ‘wrong with me’, I simply never knew any different, Scoliosis was just a word when I was little, as long as I got my Hot Chips and Pink Milk at the end….I was happy as an other child, basically it was ‘Scoliosis, so what’ for me. I’d be the child you’d see racing around the waiting room, yabbering to Mum and Dad at the top of my voice, and who’d great my orthopaedist with a smile and a giggle; all with brace or later on scar in full view oblivious (and often getting great entertainment out of as I got older) to the stares and curious glances I would get from those around me To those I giggled about……especially the lady in all black(including black nail polish)……..I do apologise, I know understand, you had the hardest task in the world. Your world often came crashing down at those scary words ‘you have Scoliosis’ and amount of acceptance, adjustment and compliance for bracing etc you had to deal with was (and still is) indescribable. I couldn’t help but observe you and wonder why your world seemed to be over (I learnt in the waiting room watching people that age (13/14) is where difficulty in brace compliance is largely experienced. They were often in shock; the daughters because they didn’t want to stop wearing skimpy tops and look ‘different’ and the mums because they didn’t like seeing their gorgeous daughters in bulky pieces of plastic)

Like many scoliosis diagnoses, mine happened by pure luck. If it wasn’t for the fate of that day, I probably wouldn’t have been diagnosed with Scoliosis until many years later. I was sitting on my Dad’s or Mum’s (they can’t remember which, but both claim it was them lol) knee at the GP getting Vaccinations when the Doctor noticed I was sitting ‘a bit funny’. He asked to take a closer look, organised X-Ray’s to be taken, and just like that a diagnosis of Scoliosis was made.

As with many of you out their, my parent’s were in absolute disbelief. They thought ‘what had we done’ and then ‘how could we have missed this. When you knew what you were looking at it was as clear as day……..however like any parent, I just looked like ‘a normal kid’, scoliosis naaaaahhhhh, she’s just our little girl.

I still believe that another stroke of fate led us to my orthopaedic surgeon, whom I still love to bits and have the uttermost respect for in the world. When were referred to the children’s hospital, it was almost blind acceptance and hope by my parents that the surgeon was good, and knew what he was doing. And by word was he bloody good (and he would go to the US regularly to ‘stay abreast’). He can still remember the first time I toddled (well I was only 18 months old ;-) into his rooms; curly blonde hair and big blue eyes. Essentially I grew up with him (our ‘relationship’ spanned 17 years, which is longer than most marriages) and he developed a huge soft spot for me. Whilst hazy, I have strong memories of him when I was a wee tot, I remember before he had an exploding pot belly and greying hair he he. The greatest thing, was that even when I was too young to understand, he always spoke too me, in simple language that I could understand, he looked at me, I was spoken to not about, and when I could understand, I was always included in the decision making process.

For then, and still to an extent today, my Scoli diagnosis at 15 months of age was ‘odd’, the Scoli was there for no apparent reason, and was sitting at 60 degrees apiece at diagnosis. Really I was ‘meant to’ have something else ‘wrong’ such as Spinal Bifida…….for some reason I didn’t, the world does work in mysterious ways sometimes.

My parents (bless them) spent the first couple of months convincing my Doctor after the diagnosis that they could cope, mentally and physically with placing me into a Spinal Brace, to correct the curvature (you’ve always got to hold that hope that ultimately correction will occur). Something had to be done, and a brace was the ‘best option’. Against my surgeon’s belief that my parents could cope, a brace was made, and at the end of ’87 I was placed into a TLSO for 23 hours a day.

Not that I have any recollection of course, but for the first 24 hours their were a lot of tears in my house. I was crying, and my Mum was crying because I was crying. However soon Mum decided it was going to be a long journey (well it was, spanned 17 years), and that they’d support me, but there’d be no restrictions, nor an mollycoddling. My Dad (whose got the soft spot for his ‘little girl’, what Dad doesn’t), tried at first……but Mum stood her ground…….if she wants to do it, she’ll find a way.

The brace wasn’t a hindrance to my childhood, nor did I stop and consider ‘I can’t do that ‘cause I’ve got a brace’. My childhood was as normal and happy as yours…..except that when I got dressed, I’d be putting on a brace, my ‘tin ribs’, and ‘tin feet’ (orthotics in my shoes). To me a brace was the most normal thing in the world…….you were the odd one, not having one, I thought that everyone wore a brace :) I thought my plastic body was ‘cool’…..what kid got to place stickers all over her body and not get in trouble for it…..not many; and I’d show others at every opportunity. Even at 13 I was remembered as ‘that girl’ in Kindy who had stickers on her body. I would come inside muddy……but what kid didn’t. I’d also hang upside down on the monkey bars with brace in full view; oblivious to the stares of the other parents.

It amazing though, when you’ve got a child with a medical condition, every parent seems to be an ‘expert’ and gives an opinion on everything. And often assume if there’s something wrong with the body, there’s something wrong with the head. What I would tell them, much to Mum’s amusement when they asked what was ‘wrong’ with me “Nuffin” (then I’d stare at them like they were loopy). And really there wasn’t….ok I wore a brace, but there’s lots of kids a lot worse off than me…….I was normal. No different to the kid next to me. Mum instilled in my from a young age ‘don’t let anyone say you can’t do something’

I did ask once ‘mum why do I wear a brace and Suzanne (my sister) don’t. She explained, your sister’s spine is like this (she put her finger straight) and yours is like this (bent her finger) and the brace will make your spine like your sisters (and I was happy with that explanation).

Not surprisingly, my earliest and best memories are to do with Scoliosis. I remember as if it was yesterday going to PMH to get brace’s made, being covered in goo (plaster), getting balloons on my feet (lol now that’s the coolest thing in the world when you’re 5) for my feet orthotics and then the best bit Strawberry Milk and Hot Chips in the Canteen. I loved going to see Gordon (the guy who made my braces since I was little and still made my orthotics up until he retired last year) and Mr O’Connor I still have the uttermost respect for them and love them to bits. And one of the greatest days, was the day I could wear Sandals for the first time (due to how my orthotics were made for many years I had to wear sneakers/tie up shoes, not that my frilly socks Mum made weren’t cool, they were) I literally danced through the shopping centre with excitement, and wouldn’t take them off for a week.

For many years, it seemed as though the brace was working. Although fluctuating, going up, then down, then up, the curves were going ok and weren’t spiralling upwards out of control. In 1992 they were behaving themselves at 23 degrees apiece and the decision was made (after a yearish of night time only bracing) to take me out of the brace and move into wait and watch monitoring. I was monitored at 6 monthly intervals with x-rays every second visit (basically trying to limit my X-ray exposure, they kind of went overboard on the x-rays when I was little).

Was the decision to take me out of the brace the ‘right one’, in hindsight it was, and wasn’t. It was because it gave me a taste of your life, the brace free one and gave my atrophying muscles a chance to work (although I’d swum since I was a toddler the muscles were lazy and atrophic). They (my Doc and my parents) also truly believed my spine was stable………..and in the days before the plethora of information on the internet…..that’s what you had to go with, previous knowledge and a sense of hope an trust in the surgeon (for my parents). My parents hoped we’d avoided surgery, but however three years later, that decision of that day came back to be one of the worst made……..we were back were we started, the spine reverted to a spiralling out of control increase (at 50 degree plus curves) and fighting a losing battle against time and puberty. Hindsight’s a marvellous thing though; guess that’s why it’s called hindsight.

I’d term the brace free years (in between the first round and second round of bracing) some of the best of my life. I was not hindered (not that the brace hindered my childhood, but I hope you understand what I mean) buy I could buy clothes what I wanted, with little thought, and didn’t have to think about taking the brace on and off.

Puberty’s an evil thing, in more ways than one. Your body starts changing in so many ways and then comes the embarrassment of the first bra and the horror of menstruation. For me, it was a horror in another way whilst my body was on the rapid puberty increase (started about aged 10 ish) it was also when my spine went on the rapid spiralling, out of control increase. Early 1997 they were back up in the high fifties and high sixties and the decision was made to give bracing ‘one last try’. The curves were very stiff, very rotated, but we simply had to try ‘one more time’

However to get a brace was easier said than done. This is when I began to experience and understand what no child should have to go through, and I hope to dear god that no-one ever had to experience what I did, the horror of hospital politics and the drive of hospitals of ultimately money first (despite what they say on the surface). At the age of 10 and a half, my life was no longer carefree; it was consumed by the how’s and why’s of hospital politics. The fact I was always able to understand what was going on worked against me, I knew exactly why and whom was preventing me getting a brace when I needed one so badly. I learnt very quickly hospital politics, the hows and why’s/what was going on. I understood exactly why and what was going on, why things were suddenly not able to be ‘afforded’ by the hospital…..never mind the effect on the patients and the patient’s families

For some reason there was no ‘money’ in the Public Hospital System for braces to be made. And the brace had to be made through the public system at the time, as there was no-one and no facilities to do it privately. They were all made at the children’s hospital, they could (but weren’t until after the debacle of this situation) be made at the Rehab hospital, but weren’t (NB now the Scoliosis Clinic is as the Rehab hospital, and this is where) The hospitals said they couldn’t ‘afford’ the braces……..somehow the money had disappeared (I still don’t understand this to this day)…….yet there was still money for paying things such as paying hospital ‘big wigs’. There were approximately 15 of us waiting, most of them kids in Wheelchairs, the hospital simply ‘shut production’ and put themselves first above us (the patients).

After many rounds of arguments (lasted 6 months plus); desperate attempts to simply be able to ‘get them made’ (they tried everything imaginable, yet no hospital would help). And it was desperate and stressful beyond insurmountable belief. It began with simple arguments and long discussions between the relative parties, then progressed to my surgeon having a heart attack from the stress of it all, my Dad making a back brace bed (even that didn’t help……couldn’t find anywhere to make them), my Dad going on Radio and being told there was nothing wrong and it was all in his head (ha ha ha………..those people of Perth were very, very wrong); magically the money reappeared, the rehab hospital allowed the braces to be made their. There will always be a feeling of what if……….what if I had been braced earlier (it was the crucial 6 month window, based on my growth, when periods began etc) would my curves had reduced and avoid surgery (or at least held it off)……well we’ll never know, and you can’t spend your life considering the ‘what if’s’; it’s not healthy and achieves absolutely nothing. Life is for living in the present, not in the past.

Continued...