Healing, and triggers that make us realise old wounds never really heal...

If you're dedicated to reading this settle in with a drink, this has taken 2 weeks to write; its not been edited as I wanted to publish it online before the end of 2014! 

Its time to heal again, and 2015 has to be better!

Ok so in my first blog, I shared a transcript from one of my presentations, I spoke about losing my speech, and the process of mourning, and moving on, and getting on with life. I generally try n look on the bright side of life, and look at the positives rather than give any energy to negativity. This time though I need to speak about the raw emotion from one small trigger that has ripped a deep emotional scar open and so I can begin the healing again, not just for me, but for and with my family, particularly my mum and my siblings.

The trigger was a message from a colleague and friend, who knew a little of my experience in that place I used to refer to as ‘moldy rose’, asking if I had heard they were demolishing the site at Corinda? Of course I hadn’t heard this news, at first the emotion was of slight relief, and my first response was to find out when, so I could dance on the dust and ashes of the site where my life, and that of my family’s were irrevocably changed forever, but that slowly grew over the week to anger.

Anger because by demolishing the physical site effectively the powerful corporate cunts hiding behind a charity/medical model of servicing the ‘poor’ cripple children, and taking the ‘burden’ off families were again invalidating the abuse that has occurred over decades. Where part of my spirit had been broken, where I was robbed of my speech, and so much more. A flurry of emotions began to stir in me, more and more as I processed this news, and I began to write vehement reviews all over the rebranded Montrose Access Facebook page, and started to see more and more negative reviews in the form of one star ratings. I personally would have given a minus 1 rating if that were even possible! My review at first was removed, so I re-posted and re-posted and received some politically correct statement of how to go about making a formal complaint. My response was, that we had tried to do that over 2 decades to no avail, and I will continue to share my experience publically.

So here I am writing it all out, after a Christmas party with friends on Friday night, one of my sisters came back to my place, and I suddenly blurted out ‘I got news this week that Montrose is being demolished’ (well I can hardly just blurt, but as I typed I started crying uncontrollably). Having been processing it all week, the flood gates opened– I really don’t know why I am crying over this – but having flicked through their Facebook page a few times during the week, I saw photos of rooms and things that hadn’t changed in 24 years. I guess also not knowing the corporate logic of demolishing the property, whether it be for financial gain, to build a new ‘home for cripple children’ or rid them of the bad press that place attracted over many decades. And whilst the advocate in me would love to see every bloody institute covering as a ‘home’ a place of pretend refuge for the ‘poor’ crippled blown up, demolished and dismantled from the upper echelons of management down to the scummy abusive so called care workers, something in me was screaming, they cannot simply knock this place down and wipe out the pain of the survivors with a wrecking ball and bulldozers.   

I am going to share some of the fragmented memories, that have started to flood back, that I thought I’d buried deep enough to forget, some maybe repetitious of the first blog, but these are raw once again, and I will not be sugar coating anything with a positive spin, haters will be haters and I expect to get the ‘how could you tell such stories…’ This is my reality, my memories and this is the truth of what I saw and experienced in Montrose – the home for cripple children.

Mum and I had driven to my grandmas the day before, and mum and I stopped in Toowoomba and did some shopping – I was excited because mum had bought me some new clothes for what was to be a 2 week stay, the next day we set off from grandmas house, I remember it being a bit emotional in the car, but we chatted and made light hearted jokes about boys and what I might get up to.

It was a Sunny Spring Thursday in October, that my mum and grandma drove in through those big old rusty gates, When we arrive mum was ushered into an office to fill out forms and grandma n I were escorted to a dormitory type room. Grandma helped me unpack my things, and then we went back up the sterile 3metre wide ramp corridor to meet mum. On our way back up I noticed a side ramp to a different wing or quarters, and asked what was down that ramp, they told me that’s where the people who didn’t go home on weekends stayed; I didn’t realize that would be where I would be moved to on Saturday morning.

When we met up with mum, I could tell she was upset at leaving me there, the matron or who ever she was that mum had just been with tried to make the good-byes quick, but mum and grandma lingered a little bit longer, took me for a walk through the grounds and gardens accessible to the public from the car park area. Staff remarked ‘parents usually don’t stay this long, and its usually best if they don’t …. The children need to get used to it, and fast’. My grandma, who could be quite abrupt when needed, replied ‘well this isn’t your usual parent’ in her cutting tone, she was a feisty one when she needed to be.

I reassured mum that I’d be fine, and I will see the city specialist, and when she come back, we might have a better treatment plan for my arthritis. We had been assured when the booking was made through the local community social worker back home, that I would see some specialists, but most of all I’d have fun to take my mind off the pain caused by this flare up.

It was getting late into the afternoon, and eventually mum and grandma left, but I felt all our hearts tearing as we said goodbye.  I was escorted back to my bedroom to ‘do my own thing’ before dinner; I was having to use my push chair which I propelled with my feet due to the flare up, and I was having trouble mobilizing independently even in the chair. My elbows had seized, so I could only use my forearms a little to help propel my chair. I managed to maneuver myself around my ‘room’ a little and retrieved my Walkman and settled in to play some music. It must have been around the time shift change occurred as I had a new face poke their head in and introduced themself. We struck up a conversation around religion, having been raised loosely in a catholic family, I do use the term loosely, because we were not regular churchgoers, nor did we pray, but we cursed and swore when appropriate to express passion or anger. We were just an ordinary working class middle income earning family; mum was a nurse, and although my parents had divorces several years earlier; dad was a hard working ganger on the railway.

At this stage in my life I was struggling with my belief in A god, and all religions. This worker explained he had recently, or was at the time converting to being a born again Christian, I cannot exactly recall the status; but we had an intellectual and quite mature conversation debating Christianity and religion and the difference. It was during this that I witnessed what I now recognize as the shower procession; which was more like herding the cattle in for milking.

Young girls and boys were stripped naked, lined up the hallway on shower chairs with a towel thrown over them, that most were unable to hold them up so everything from butt cracks to vaginas and penises were able to be seen by all. It was like I had entered the dark ages I had only ever read about in books, these young prepubescent children and teens denied any dignity, or not even aware that this was not appropriate. Well it wasn’t appropriate for me as a stranger to see 3 in at a time, three out, and the process repeated while they sat there totally naked1 The staff I was talking to must have interacted for longer than was deemed appropriate, as another staff member chased him up to do his jobs.

Dinner was called not long after that, at this point I couldn’t feed myself because of the swelling in my elbows; the pain was unbearable to move them. This annoyed the staff because I was yet another mouth to stuff, then the medication trolley was wheeled around the table, I was on a high level prescription aspirin/panadol called eccatrin, they were large orange tablets. Mine were dispensed and I downed them with no trouble – my pain started to ease for the night, and some ‘residents’ for want of a better word had TV privileges. Because I was there on a temporary stay I was allowed stay up till 8pm at home my bedtime was 8.30 or 10.30 on holidays.

I watched some city TV, which for a country kid only used to 2 channels at that time was a bit of a treat, but after a big day of traveling and some shopping on our way with mum and grandma I went to bed when I was told to at 8pm. Later that night I was woken to take my medication, at home if I was sleeping soundly and didn’t appear to be in pain, mum wouldn’t wake me; but because they didn’t know me, or my needs, I was just another ‘poor’ unfortunate cripple they had to ‘look after’. I refused that night, and the staff on duty let me be, I went back to sleep quite easily.

The next morning, breakfast similar to dinner but more hectic, as a few ‘deemed suitable’ attended a main steam local school, they were priority to get fed, and cleaned up to make the bus transport. The others (myself included) were processed in a similar way, breakfast, cleaned up, and dressed for the days ‘activities’. Activities included either attending the ‘school’ onsite, or playing games, or whatever the staff had planned.

As I said earlier my memories are fragmented, both from repressing them, but also due to the overdose I received over a period of a few days. But I recall seeing this huge therapy pool, I asked if I could go in the pool, but I was told there were no staff to supervise me, and a physio hadn’t assessed me, and the pool rarely gets used anyway for therapy. So what was it used for, and why have this huge resource if it rarely gets used? But these and many other questions didn’t start to surface until after… And still haunt my mind, with no answers. I know too well many things we will never have answers for, like the loss of a loved one, missing children, and even on a political level – why our ‘leaders’ make dumb statements, don’t follow through, or even recognize global warming in the case of our current prime minister. But I do feel the questions I have had since the medical disaster that occurred at the hands of virtual strangers, and the wastage of lives when clearly the resources were available could be, and should be answered. But I digress; I need to purge all these memories, and questions into words for everyone to know.

Because I refused my medication the first night, (but slept fine) it was decided I needed to see the local GP, I recall being taken to his clinic, and he seemed like a decent enough fellow, he reviewed my medication, and added an anti-inflammatory, stating the prescribed ecatrin was a little high, but given I had been taking it on and off for a number of years then, if I didn’t want it, and could sleep through the night, then I wouldn’t need to be woken. It was a quick non eventful GP trip, though at the appointment he contacted Dr Tiernan – a pediatric rheumatologist and made an urgent appointment with him at his private clinic at the Wesley hospital – I was happy about this, as getting an appointment with specialists had always been a long wait period.

We returned to Montrose, and it was lunchtime, again another experience that was akin to feeding time at the zoo; not the orderly usual school yard lunch break I was used to.  After lunch I was advised I should go to the school room to try and keep up with my school work, as I had missed a few weeks prior, having always had a thirst for knowledge and desire to be educated I obliged. Again another culture shock for want of a better word, I had been main stream schooled all my life, and to walk into a large hall shaped building that I can only liken to that of day care, with books, toys and puzzles suited to a kindergarten level. How or what was I going to gain from spending an afternoon in this space?

By this stage the reality was hitting, this was no ‘school camp’ it wasn’t even a hospital, it was a waste land surrounded by beautiful gardens to give the illusion of a ‘home’ or ‘boarding school’ for those poor cripple children whose families simply couldn’t cope… And why couldn’t they cope? They couldn’t cope with being told to give up on their child any longer, so many did, and as a result this hell hole scored charitable grants, government funding and the rest; when if only half this money was channeled into providing more support to families in their own homes, we now wouldn’t have a generation of parents ridden with guilt, and we wouldn’t have survivors like myself, speaking out about the atrocities that occurred.

Again I digress, there is still so much to be told, and this is only my story, my family’s story, I do wonder how many more out there with scars in their hearts, and nightmares in their sleep still, because of this institute??

After an hour or two in the ‘school’ room I requested to go back to my room to read my books and have a rest. I was informed we were going on an outing to the movies in the city that evening, and to gather my clothes and toiletries I would need for the weekend – this puzzled me, but I didn’t question, I was still reeling from all that I had seen and witnessed in just 24 hours, I remained hopeful that I’d get used to it, and settle in within a few days. Where there is life, there is hope, right?

The shower herding started earlier that evening, some children were picked up for the weekend, many others stayed. I chose to wear one of my new dresses, as going out in the city for an evening was a big thing for a country girl like me. It wasn’t until they started loading us into a big white van, and not your ordinary people mover, this looked like a prison van on the outside, and inside was a cold steel box with ropes and straps to tie the chairs down. Because my chair was a basic stock standard for short-term use when I needed it, it didn’t have to tie down points as most chairs do nowadays. They stabilized it to one of the side bars and jammed me in between two solid chairs; I’ve since been on many hairy a rides, but I still flash back to that ride as my chair tilted and slid all over.

Upon arrival, the cattle were unloaded one by one, with staff pushing some of us; we were offered McDonalds as a ‘special treat, for us special boys and girls’. I requested just a thick shake, as I knew I could hold that and drink it independently, I hated having to be fed, and being fed in public was not going to happen!!

We were then herded into the cinema with no choice of what WE wanted to see; it had been decided for us. I can’t even remember what the movie was; I was just watching this freak show (not my idea of a cool freak show either) I was in with disbelief and horror.

When it was time to leave, I asked if I could get lemonade; the staff ignored me – I was one of about 15 they had to round up – with only a few staff plus the impatient driver. As they were strapping my chair in I asked again; it was the nice staff member who I had spoken to on my first afternoon, he said he really shouldn’t as no food or drink was allowed in the bus, but he ran and got me a small one anyway.

Upon arriving back through those haunted gates, we were unloaded and herded into the ‘weekend quarters’ where I found a few of my belongings on an antique hospital frame bed in a double cubicle style room. We were changed, given a wash over with a flannel, medicated and put to bed. Again that night I was woken to take more meds, I tried to refuse again, but this time my refusal was met with verbal abuse of how I was wasting their time, and I wasn’t the only one in here they had to take care of.  I gave in, and took the pills, and went back to sleep.

The next morning I woke up so sluggish and very emotional, I tried to lay in as long as I possibly could to avoid seeing the quarters in the light of day, from what I had seen in the dark of the night after our ‘lovely’ outing, I knew this was going to be a very long weekend.

I don’t remember doing much that day, I know I slept a bit, and was hanging out for 6pm to be able to ring home.  But 6pm was dinner time so I had to wait till 7pm, by the time I got to speak to mum I couldn’t stop crying, not from pain as I usually only cried because of stupid physical pain, or over silly teenage girl stuff. This was different, it wasn’t homesickness either, as I had been on school camps and barely thought of family, or missed home – I was too busy having fun with my friends… I felt like I had no control over my emotions, and again because they didn’t know me, they didn’t see the deterioration. The staff member in charge of monitoring phone calls threatened to hang up if I ‘didn’t cut out my nonsense’. I could hear mum getting distressed so I tried to pull it together, and attempted to make small talk about what my sisters were doing, and how my little nephew was. Mum was concerned that I was so upset, and in the end the staff took the phone off me, but mum had told her she was sending a friend to visit the next day, and gave permission for this friend to take me out. Marie was one of mums’ friends from work, but her and I had become close over the years, and she even took me on little holidays, I loved and respected her very much. She was like a big sister, but without the bickering I had with my actual big sisters, she enjoyed quirky movies with me, and we always just had this indescribable bond.

After the phone call ended, I became a bit hysterical, I just couldn’t control my emotions at all. They decided a bath might help calm me down, so they ran a bath and took me in, I freaked out again – this wasn’t a bath tub – not in my world at least. It was a huge surgical steel trough. But the water was warm, and it did help me calm down a little bit, until the three nurses standing round me started talking about me, and how my mother should have bought me here when I was younger, so it wasn’t such a shock to me. I tried to explain, this wasn’t my reality; I had grown up in a family home, and this was all that was offered when we asked for some in home support. But because I became emotional again, all they saw was a hysterical spoilt little cripple.

After the bath and such an emotional day, I quickly went to bed, but was woken again in the night to medicate, again I tried to refuse, and again I was abused, only worse, being called spoiled and to just accept it, that mum couldn’t handle me anymore.

The next day I woke up even more sluggish, but not as emotional, just vague. Marie came and saw me before lunch, and I begged her to take me out for a drive – I used to love to go cruising with her. Of course she didn’t hesitate, we went out, I think she took me to bingo, but this is where things began to get really fuzzy. I recall feeling like I was drifting in and out of sleep; I recall trying to have a conversation but not being able to say some words. We had lunch, and drove around as long as we could, and I knew she had to take me back, but I could feel she didn’t want to.

I started to feel sick, and as we parked I began vomiting, Marie rushed round to the passenger door and tried to turn me around out of the car so I wasn’t sick on myself but could vomit on the ground; she was shouting for a bucket and towel. Eventually staff came out, they got me into my chair and told Marie they’d take over from here. They whisked me away before we could say good-bye, and that was all I can remember of that day. Mum said she had spoken to Marie that night (I wasn’t allowed any calls that night, because I was sick, and they didn’t want to have to deal my hysterics again) Marie had expressed her concerns that I wasn’t very coherent or my usual bubbly self.

I recall being moved back to the main ‘house’ or dormitory sometime that night (Sunday), or early the next morning – Monday. I recall being taken to see the specialist that Monday afternoon, trying to explain symptoms of this latest flare up, but repeatedly apologizing because I was having trouble forming my words; I recall telling him my right side felt heavier, and I hadn’t experienced that before. He had a lovely manner, and noticed I was drooling a little, he asked if that was normal, and I recall crying again saying no, I was usually so independent, and I was losing what little control I did have. I just recall apologizing constantly through that consultation because I couldn’t talk clearly, and I was always such an articulate and chatty young woman.

I don’t recall the dinner routine or the shower procession that night, but I remember waking up half falling out of bed, and calling for help. The staff came in threw me back into the bed, and told me to stop calling out as I was waking up the others, and if she had to come back in and deal with me again, she would move me. Move me where? I didn’t remember having called for help before that?

After that I started vomiting, but I was too scared to call for help, she must have heard me retching, and burst into the room abusing me in her heavy accent. I have weird memories of being taken to this little hut thing out in the gardens, but the next thing I recall was being stripped off and taken to the showers. I had vomit in my hair, and was again so emotional, apologizing and asking for help; she turned the shower on cold and pushed me under it, leaving the water to wash away most of the chunks before coming back to wash me properly. All the time telling me to shut up, and I was carrying on for no reason; I was a 13-year-old girl in a strange place, barely able to stay coherent, and constantly being verbally abused.

Before she could come back I began cramping again, not wanting to be sick again I tried my hardest not to vomit, but then my bowels let go, and I couldn’t stop anything. I cried out for help, and she came in swearing at me – I assume she was swearing – though I couldn’t understand much of her thick accent and my state of delirium. But I recall her grabbing me by the hair, rubbing a flannel over my face, which had been used to wipe my soiled butt. All the while telling me how disgusting I was, I mumbled that I was going to tell someone, it must have been clear enough to be understood as I just recall her pulling my head back by my hair telling me to go ahead, because no one would ever believe me, taunting me, in my face who’s going to believe you, after all the tantrums you’ve thrown… I don’t remember much of the morning after she slapped my face and hosed me off.

The next thing I do remember was being put into an old car or truck, and then I remember being in the emergency at the royal children’s hospital; I was trying to give them my name and details, and asking them not to call my mum because I knew she was on night duty and would be sleeping, but no one could understand what I was saying, not even I recognized the noises that were coming out.

I recall a gentle nurse come to escort me to have tests, he tried talking to me, but when I got upset that I could not reply back in a coherent state, he just started asking me questions I could answer with a nod, a blink or a gesture. After I had a blood test I don’t remember anything.

I woke up about a week later, my family was there all crying, what had happened who had died, why was I in hospital – all these questions spun around, but no words could come out. I grabbed someone’s arm and began spelling letters onto their arm. Each wrong guess frustrated me, each correct elated me – I am still in here, I can hear you, I can understand you, but no one could understand me. They told me not to talk, just rest. Slowly I began remembering flashes of wakefulness from the week that had been lost in hospital. My Dad had been to see me, he never liked hospitals and very rarely came to medical appointments, so for him to have come, I knew something major had gone down … But what, and why couldn’t I remember, why couldn’t I chew, or swallow or even drink without help, and without dribbling like a teething baby?

The days and weeks after, as I slowly became more coherent I was told I had had a stroke due to being over medicated; the strong aspirin had thinned my blood so much I had been having mini strokes for days, before a major one had occurred sometime between Monday afternoon and Tuesday morning. I was also told I had finally ‘become a woman’, although I had had my period sporadically for about a year, it wasn’t regular. In that week in hospital I finally started menstruating; to many women that is still seen as a curse; but to me it was just another thing that had been stolen from me.

My city cousins and aunt had come to visit me after a few weeks, I remember just sitting quietly with my Aunty and not wanting anyone to see me like that, she wept for the niece she had once described as having spunk-itude; I wept because I felt like more of a burden than ever before. Plus I didn’t want anyone to see me like that; I was trapped in this even more twisted, broken, bent body and I could no longer ‘tell it like it was’. My cousins didn’t come back again, I think all the drool, and snot, and tears scared them off – who could blame them though – they were boys and they had seen me give cheek as good as I got all my life, suddenly I was an expressionless, motionless figure in a chair with tubes and braces keeping me still.

It took many months of rehabilitation and many years of dealing and accepting this as my fate; I had never thought of myself as a cripple, or disabled, I merely had a medical condition that affected my joints. I have accepted and embraced my place in the world of disability; I am a woman with a disability, and proud of who I am, and what I’ve made of my life.

I am not ‘inspirational’, I merely want create a decent life for my son and myself. I am not a victim, I am a survivor – and I am not going down without a fight, I am not an object of pity, don’t treat me with pity unless you want your own pity party.

So I’ve been writing this out for almost two weeks, I’ve cried, I’ve laughed at snot pour out, I’ve healed a little again, but the hardest part was talking to my Mum about opening these wounds up again. When I told her how the news of Montrose Corinda ‘home for cripple children’ was being demolished had triggered all these feelings, and that I was intending on writing the whole story out – her words made me realize I had to tell this story, our story.

My mum said:  I will never ever forgive myself for you being there I think every time we are together how it is my fault If I could change it I would in a heart beat I would never change you as you are but that time in there I would change very quickly I will regret my weakness until the day I die as I believe your life would have been so different and I always wanted the best for all of you but feel you were dealt a triple whammy, I would never change the person you have become or the mother or daughter you are but that Montrose time I would.

No matter how much I tell my mum it was my choice too, and we made the decision together, as a parent myself I understand more now that we take ultimate responsibility for the choices we make which affect our children. To know my mother still feels such guilt just seeing me; in the years immediately after the stroke, I recognize now I became too dependent on her, and she accepted that, but I didn’t realize how deep her own scars went from that one fateful choice to accept help, she sees as a weakness. My mother is anything but weak; she’s raised four headstrong individual wonderful children, and has just adopted a foster child who has been in mums care for almost 10 years.

My father passed away the year my son was born, and I have regrets that my last phone call to him before I lost my speech was one of teen angst and full of nastiness; I don’t believe in a god, or the ever after, but if I did, I think he would be saying ‘come on girl, get going, you can do this’. And I hope he’d be proud of me too.

So why have I written all this out, these stories, the horror stories that we have lived need to be told, and like fables they need to be cautionary tales, even lessons for future kids born with disabilities, parents, and siblings. Like I said don’t pity me, but get angry with me, take action with me, share your stories on social media – the platform that’s given us all an equal playing field – use it to play hard!!

To all the ‘anonymous’ benefactors, members, and any other fool who is donating to this ‘service’ in disguise, please reconsider where your money is going – my mum paid a few hundred dollars (in the early 90’s that was a lot of money, incidentally she wanted me to let you the reader know, she never did get any reimbursement back of the remaining 10 days I was in hospital) for me to stay there 2 weeks, the damage done in just a few days, not only to my physical state, but emotionally to my whole family is beyond any ‘good’ they pretend to do with your hard earned money. 

Give your money to a family doing it tough, or invest it directly with people who have viable business plans, and hopes and dreams for the future – I know plenty who are labeled as disabled, but who have the drive to make this world a better place. Stop pouring good money after bad into an already fully funded corporate run organization. Perhaps if the upper echelons of management took a pay cut – the figure they state on their website of being underfunded a few thousand every year for every client; they wouldn’t need to use the ‘poor’ cripple children in tragic marketing campaigns.  I try not to think about ‘what if’s’ but in this case I do often wonder how differently my life, and my family would be now had we not all had to deal with such adversity. I have said in the past, that although the medical disaster had turned everything upside down, and I had encountered, and met some truly remarkable humans, some who have become dear friends; I have to question also what bigger dreams would I have made come true, like being on the stage, on film, but it was my fate obviously – I just hope the corporate faceless cunts don’t ruin anymore family’s, and steal other young girls dreams as they did mine, and turn them into years of nightmares!!

It is human nature to fight for survival, and as one of my heroes says, where there is life, there is hope. I have hope, that we are on the edge of a revolution; where all people labeled as disabled, mistreated, abused, underrepresented raise up, and don’t give up. My theme song for 2015 is edge of a revolution – write your own headline, be your own headline – but be a positive Crip – don’t lay down and accept shit. 

Oh and by the way, you can rebrand, rename, Montrose to ‘Montrose Access’ even restructure the company, but one thing I’ve learned from my marketing studies is that it's pretty hard to rebrand shit and make it smell nice!!! 

This may seem a negative blog to end the year on, but its been cathartic to write it all out, and tell the now fragmented memories of what really did happen - for many years I never spoke of these events, because it upset my mother so much, and because I really didn't think anyone would believe me. I now know there are other survivors out there, and the more we tell our stories, the less they can deny, the more people will see the truth for themselves. 

Until 2015, live, love and laugh, or cry when you need to, but always remain true to you! 

Lisa XxX