Brain, Stop Thinking

Okay, so I've done some thinking. I'm always thinking, but this time I did a lot of thinking and I realised something. When I go to the RCH on the 20th of December I will, hopefully, get the answer I have been seeking for three and a half years. But in getting this answer it would mean that my life was pre-determined to suck. Because the hyper extension issue is a genetic disorder.

Genetics! They're ruining my life. They link me to my family and they've given my crap joints. Crap hyper extending joints. This is not fair and totally uncalled for. What'd I do? Why did this happen? Why was a born?

Why can't I die?

Please?

See what happens when you think brain, do you see!?

- CG

Of Interest?

On the 20th of December I will be returning to the Royal Children's Hospital. But not the pain management clinic, more like the section dedicated to genetic research. I must be of interest to this particular doctor, because usually you have to wait months to get an appointment, but I'm going in so soon.

I admit mixed feelings. As per my last post, the RCH has not been a place of happy memories for me. This visit, I hope, will answer some of the hard questions I have in life. I've been searching for this potential answer for three and a half years and I've got my fingers crossed that this time I'll know. A specialist I saw a month or so ago wondered if I had a connective tissue disorder - meaning that my joints hyper extend more than normal. And they do hyper extend more than normal, physiotherapists always comment on how my knees do it and I'm sure I recall the physio at the RCH in 2008 checking out how many of my joints hyper extend. But how its taken them so long to question this, I don't know. Doctors!

And now for something completely different, I'm going to randomly change the subject [because that's definitely not something I do often]

I finished school for the year on Wednesday last week. I admit mixed feelings about this because being at home - with my family - does not appeal to me. It's not so bad at this time because I'm the only one at home. But my brother finishes school next week and my sister will be home shortly too and this promises some not so fun times. I'm actually really relaxed during the day but the moment they all come home I seize up, become hostile, get angry.

What does that tell you? Seriously, because I'm very confused.

- CG

Note to Self: Stop connecting the Dots

So here I am continuing to reflect on what has been and I'm thinking about the anti depressant the Royal Children's Hospital had me taking for a short time at the tail end of 2008. At the time I was experiencing pain in my achilles tendon and this was just as the other tendons and ligaments began to give way.

They told me that this med would a) help with the depression, b) stop the pain and c) help me sleep. I don't believe it helped with the depression but then it would depend who you ask (because what on Earth could I ever know about myself) but I know for sure it didn't help me sleep nor did it stop the pain.

At the time I took very little interest in this med, but now having googled it, I'm quite literally offended. What they were really implying in giving my this med was that I was experiencing phantom pain and that there was actually nothing wrong with my ankle, nor any other limb on my body.

They also tried various 'therapies' to get my brain to accept that I was imagining it all. Two years later, I'm very offended and put off. My experiences at the RCH have been anything but inspiring and I can't bring myself to support them. I'm sure they do great things for other kids, but for me, well I was loco. It sounds like I wasted my time you know?

And now I'm sorry I didn't listen to my counsellor of the time when she said "are you sure they're not lying to you?

- CG

I wish you all a long and happy life

I never really made peace with my grandfather's passing. I remember hearing that he'd died and I remember the suffering he endured and the suffering we, as his family, endured, but I never made peace, as such. Even now, some two and three quarter years later I still cry when I delve into it.

My grandfather, who I knew as Nonno and who's real name was Boris, was Croatian and was my Mum's Dad. He didn't like the Croatian work for 'grandfather' so he adopted the Italian version after spending some time there after escaping communist Croatia. When he came to Australia his trade became that of a builder and he worked on some of the greater structures in Victoria and Canberra. One building he helped build was the Monash Hospital. It was probably this occupation that brought on his sick and twisted death.

My favourite memories are of him and I doing jigsaw puzzles and going to the park that was just up up the street from their house. I liked to go on the swing and he pushed me. It took ages to complete the puzzles but they were always fun and satisfactory. Of course it changed as I got older, I didn't visit as much, we didn't do as many puzzles and we didn't really go to the park. Looking back on that now I'm sorry I didn't visit more, because I was ten when it all went down hill and I guess you could say I kind of feel like I was robbed. And I got totally ripped off as a far as grandfathers go. Grandpa Peter died when I was seven from bowel cancer and the hardest part of that was two years later medicine advanced to the point where he could have been saved. And my Nonno was disappearing as I turned ten. What kind of world is this?

Nonno started to forget things very gradually. At first people didn't really notice but in the space of just four years he was gone. I didn't understand for most of that four years what was happening so most of it went straight over my head. Mum and my grandmother (who we call Baba) knew and something I heard later was the time he forgot who Baba was. I don't think I'll ever hear anything that horrible, in that sense, ever again in my life (and I certainly hope that this remains the case). He forgot his own wife and that was very confronting.

He was diagnosed with Alzeihmers and Dementia. The type of dementia he had was Lewy Body Dementia and it was probably the worst one. He spent his last year and a bit in and out of hospital and in an awful nursing home. The nurses at the hospital always said he was young for a dementia patient, in his late 70's as this all unfolded. I only visited him once in hospital. It was July 2007. Mum says now that they should have let him die in that July when he was rushed to hospital with pneumonia. He died for a small amount of time and, I think, she is right because surely those eight extra months weren't worth it. I visited him a short time after this and it was so confronting I never went back. He was attached to an oxygen machine and his voice was different and people had to feed him because he'd forgotten he had to eat. I never went back after that. The last time I saw him alive was at the nursing home. I didn't know this at the time, but he didn't know me.

Mum told me much later he told the nurses he was proud of his grandchildren. He was always telling the nurses about us and as much as it makes me smile it also makes me sad. 

He returned to the hospital that final time after the nursing home failed to feed him, simply leaving the food in his room, which he promptly never ate. He lived out his final weeks in the Repat facility, which I hear is a truly awful place.

The day he died I wasn't sure I believed it. Dad had to leave us at Nonno's friends house so he could take Baba to say goodbye - Mum was already there. Baba didn't make it in time to see him alive. Mum didn't come home til late that night and I attended my weekly art class like it never happened. It was Friday the 7th of March 2008. 

I nearly didn't got to his funeral because I thought it would be too hard, but I went in the again. I did not attend the actual burial. I visit his grave at least once a year and I still feel sad and cry when I sit there and think about everything. 

I wouldn't talk to anyone about it and I still won't and even as I'm writing this I'm crying. But I felt like it was necessary because it needed to be said, written down. 

I still think it unfair that I lost him so soon. I still think it unfair that we didn't finish more puzzles or go to the park more and I'm sorry, so so sorry, he'll not be there when I graduate high school. 

What kind of world is the on we live in? We have cancer, tumours, dementia, alzheimers, poverty, famine, war, AIDS and so much more. I'm currently questioning my faith. People turn to God in situations like this and all I can do is think 'why?'.

My only solace is he never knew what was happening.

I wish you all a long and happy life

- CG

Justice

A friend of mine kindly took some pictures of him at Wodonga races on Tuesday. He ran sixth but it was very good to get a look at him again more than a year later. He's grown a lot and no longer races in tapes, which is excellent. I'm so glad to see him looking so well and to hear that he's still a hot head, which is just the way he was when he was mine.

Since Justice, I've had Hope, Mia, Toby and now Smoke. But none of them will be Justice. None of them centred me the way that insignificant horse did. I still hope to see him again one day. I still hope he'll recognise me.

- CG

What are friends?

I'm sad, right at this moment, because I feel like I just got a slap across the face.

"I don't have time for this right now. I'd much rather talk to you when your happier"

This is what my 'friend' just said to me. I was, of course, under the impression I could talk to this person. But wow, wasn't I wrong. They insinuated that this was all in my head, a wholly mental issue and I only have to force myself to happy. It doesn't work like that. It just doesn't. Don't you think that if I could snap my fingers and magically be happy again I would? I would you know. I'd snap my fingers in an instant. But life doesn't work that way. And why would it?

That would be all too helpful.

Depression isn't something you choose. It's debilitating and harsh. I do things I'm not proud of, say things I'm not proud of and sometimes I just don't do anything at all. But it's all just hilarious isn't it?

And this is exactly the reason I struggle to reach out to people, because most people, do not understand. And thus they give harsh judgments and treat me like a bad joke. I'm not a bad joke, but right now I'm feeling horribly alone and terribly misunderstood.

I've had a bad day for no apparent reason and I'm in that spot where I'll either explode in a fit of anger or burst spontaneously into tears. This has not helped, chemistry has not helped, my family is not helping. I still get the lecture for my nine-year-old sister's anxiety, I still get to clean up the messes other people make in my room, I still come home to an unstable place filled with yelling and unhappy feelings and I still would rather be at school than at home.

The whole situation was really summed up for me when the Kids Help Line counsellor conceded that I should just move out. I wish.

And I do. Other than that I just wish I didn't have to do this anymore. And I'm not going to lie, this will end with cuts.

I'm lost.

- CG

D'you Know What?

I don't know how best to explain things anymore. Do I give the cold truth, so I can be judged, or dress it up for sympathy?

I don't really want to garner sympathy, that being said. What good is the sympathy in the grand scheme of things? It's no good, simple as that.

So you'll all just have to deal with the cold truth, or walk away.

The problem is, I don't know what to do anymore. I'm making a mess of my forearm. One cut a week, but the scars are there for the long haul. And then there's trying to hide them. Too much work, but I do it anyway. And the kicker? No one says shit.

Let the good times roll on!

- CG