I never grieved you... and I'm sorry

I remember when we used to do puzzles. They were extremely cool puzzles too. They were the old style Donald Duck and Coyote and Road Runner ones, and they never got old. We did them every time I came over and we spent hours on them. You taught me the best way to do puzzles. You made sure we organised all the pieces of the same colour into groups. And after that we’d find the four corner pieces. And then it would begin. We’d be there all day, but we always finished. You were always to patient.

But then I grew up. We didn’t do puzzles anymore. We’d sometimes go to the park with my brother and later my sister too. But I continued to grow. And pretty soon I just stopped visiting as frequently as I used to. I thought I was too old for puzzles, too cool. And I never really thought about how that made you feel. But you seemed happy as long as I came to visit every so often.

Then one day you got sick. Except no one noticed at first. It wasn’t the kind of sick that antibiotics made better, it was the kind of sick the kills, the kind there is no cure for. You were slowly being taken over by both Alzheimer’s and dementia. You were forgetting little things at first. Little things that no one thought anything of. You misplaced your glasses, occasionally forgot your hat. Just little things. But then it got worse. It got noticeable. You couldn’t do puzzles anymore, you wouldn’t eat, you couldn’t go anywhere on your own and you’d get lost in your own home at night. One day you even forgot your wife, and you just kept forgetting things.

They hospitalised you on and off in the Austin. I still hate floor seven. I only visited you once there, but I don’t think you recognised me or even remembered. I don’t know how often you remembered anyone. Then you nearly died of pneumonia. The doctors brought you back to us in the ER, except they didn’t really, because you were already gone.

You spent your last weeks in the outside world in a nursing home that didn’t look after you. They didn’t make sure you ate or drank. And so, you returned to the Austin once more. The last time I saw you was in that nursing home. I wasn’t strong enough to visit you anymore after that. And that’s something I’m regretting more than four years too late.

You had a particularly vicious form of dementia, and it took you quickly – within four years. The nurses said you were young to be an advanced dementia patient, just seventy-four. It’s only saving grace is that you didn’t know. You didn’t know what was happening to you. You were suspended between earth and sky. You weren’t here with us, but you weren’t gone either. Your failing brain your jailer as we watched and waited from afar.

I can only imagine what it was like you for you, slowly losing yourself. But I lost a piece of me too. I’m sorry I didn’t visit you more while you were still all on earth. I’m sorry we didn’t go to the park again, that you had to stop pushing me on the swings. I’m sorry I didn’t visit you in the hospital, I’m sorry I wasn’t strong. The nurses said you spoke of your grandchildren often, saying how proud you were. I like to think that you’re still proud of me now.

You died on March the seventh 2008. You are no longer suspended between two existences. Now you are free. There was a funeral at St Gregory’s. You’re buried at Heidelberg. We visit on your birthday.

I’m not sure if I believe in God anymore, but I hope there’s a heaven for you. You deserve it. Life was cruel. You escaped Croatia illegally, escaping from the German occupation and against all odds you made it to Australia where you worked in construction. You helped build the Monash Hospital. Mum still points out the buildings in the city that you helped build. You worked hard your whole life, and your mind turned on you. I hope there is a heaven, for you.

This was supposed to be a speech, but instead I’m writing to you. I didn’t grieve properly when you died, I just wanted to forget. And now I’m crying as I write this because I’m remembering all the little things and missing them, missing you. I’m sorry I don’t visit more. I mean to, but it’s hard. I didn’t tell you that I loved you enough either. I’m sorry for that too. I love you Nonno, always have, always will.

I do puzzles on my own now, the way you showed me. 

All I want in Life is for this Pain to seem Purposeful

Today, just like yesterday, and the day before that, and the day before that and all the days before that since my last post, I just can't write. It seems that this time there really are no words. And if there are no words, then there's no longer anything to say.

I've been comprehensively defeated.

Roaccutane is causing me enough physical pain to make me squirm. Roaccutane has literally exhausted me. The bags under my eyes are close to, if not actually, three different colours. There is no such thing as enough sleep. The cardio stuffed me round, for lack of a greater explanation, and I still have no answers. Just hand-balled to the next specialist, to see if I have another possible condition. Just to add to the trauma of course. My teachers all basically want me to be more awesome, all the time. I can't do this anymore.

I'm done.

It's over.

No more.

I'm just so wrapped up in my marathon pity party, my own self loathing, hate and madness, and deep sadness and hurt that I can't see the light of day anymore. Just a pitiful gloom.

And I'm sorry. I'm sorry I've wasted everyone's time.

- Sky

Not all scars show, Not all wounds heal...

I'm having a real bi-polar night. I'd forgotten what an effort it is to keep happy during the hours where I'm confronted with a constant stream of people. I came home tonight feeling pretty good, I did some drawing and I'm liking it so far. Liking it I'm afraid I'll ruin it. But there's hours to be invested in this drawing yet. And I got on the internet, same as always. Had some chats with some of my favourite people, bummed around on my favourite websites and then out of the blue I feel like absolute crap. I feel like I've been hit by a train. I'll sleep tonight and I'll struggle to open my eyes, let alone get out of bed, in the morning. I'm feeling the familiar desire to cut. I haven't yet. But from experience I know that its only a matter of time. The latter is the most disturbing of the lot. It's been a long time since I've cut over a medical problem. A long, long time. But with a week to go I'm getting nervous. More than nervous. I think about it constantly. I'm terrified.

I'm still stuck on the what ifs. And it's killing me. The desire to know is killing me. If I'm right, then the answer won't change much in the short term -- in terms of appointments and monitoring and check ups -- but its a label. And I don't want it! I don't want to hear that I'm sick. I feel like I am. But there's a difference between feeling and knowing. And I don't want to know. But I do. That doesn't even make sense. I have to know but I'm scared. What if its bad? There's nothing they can do if it is. How did this even happen?

And you know, I'm freaking out about this and roaccutane is wreaking its own havoc and I'm scared of that. And I'm in pain. I don't understand. All my already sore joints hurt. I know its a side effect, but I don't really understand. My achilles tendon hasn't hurt in two years, possibly longer, and yet when I sit for a long period of time or get up in the morning its stiff and it aches and you know, it hurts. And I don't understand. And I'm not happy. TWO YEARS! And my knees are dreadful, they are so dreadful. There's constantly heat in them. No crouching, no stomping, tape them up if I want to to excessive walking. And my hand/wrist... omg. I'm using a hardier brace these days. So I'm sure that's partially why I had such a dreadful time with my hand over the holidays. But its never been so bad. It hurts when the horses pressure my write arm, it hurts to text, it hurts to type and use the computer in general. And you know what, what the hell is that?! It's bullshit, that's what is is. I knew this could happen, but I didn't see it coming. And I'm wearing it, but I'm not happy. It's torture.

All of this is torture. The pain, not knowing, trying to pretend I'm okay with all of this when I'm not, dealing with everyone else, being upbeat and with it. !@)($#*@)($(@#*^$(#@*$&!)@#*_!@)$%#@)(%&

Can't do it, too hard. I want a raincheck on my body and then my brain. Any takers? I'm agitated and wound up and... ugh. I don't know. I really just do not know. I want to know but I don't. I don't want acne, but I don't really want the pain. I want to live, but I want to be happy. I want to love, but I'm not sure I can trust.

All of this, just hit me. Out of the blue. I'm down. I'm trying to talk it out. My chest is a little tight -- and that's anxiety, that I know -- but wow. Want to cut. Want to sleep forever. Want to be okay.

Hello, happiness? I'm waiting. Not so patiently anymore.

- Sky

Just Who did You think You were?

I don't know where to begin to be honest. The last few weeks have consisted of me putting the feelings of someone else above my own. And to put it simply, it went on for too long. I wish, I really wish, that I'd had the foresight and the guts to end that toxic relationship much sooner than I eventually did. I tried so hard to balance it. I really did. Bloody hell, listen to me justifying my actions already... I tried to balance the unbalanceable. That's the reality of the situation. And predictably, it teetered and crashed to the ground.

I didn't know what I was getting into when I went BLAH THIS IS EVERYTHING THAT'S WRONG IN MY LIFE at this person. But they got attached so, so quickly when they saw what they were getting. They'd found someone who was like them. The dove in head first, and I erred on the side of caution. They got more and more attached and I'll not lie, the more attached they became the more I wanted to turn away. And I did. And I, by my own admission, was quite rude at times but I was able to justify that in my own mind and I'm okay with that. No guilty conscience here.

I lost 25kg in about a month is not okay. I can't eat or sleep because I'm worried about what I've done to make your ignore me is not okay. I miss you after a few short weeks of friendship is not okay. Playing on my trust issue with I'll never leave you is not okay. Who did you think you were? You don't get to say those things to me. I can't carry you and your multitude of problems when I'm grappling with my own. I may be the strongest person you know, but I worked on that. I worked fucking hard. You don't just steel yourself against the things life throws at you by chance. And as strong as I may be, I cannot and I will not carry two people. Specially not someone who is more fucked up than I am, when I can't decipher their intentions. Not for me.

So what really tipped me over the edge? Picking up my trust issue. I was happy to regard them with silence for the rest of eternity after that. I cannot explain the mix of horror, anger and disbelief as I read those words. I cannot explain it. How dare you! You are the prime example of why I don't trust people. And even better yet, you didn't even see what you'd done. And to this day, you do not get it. And then you wrote this pukeworthy status, and I had several people tell me not to comment on it... but fuck man, I was all for puking, commenting on it, whatever. You crossed the line a second time and yes, I did the only thing I could. Sever all ties 100%. I asked you not to talk to me. No, I warned you off. And I'm glad you listened because I would not have remained checked. And then your little mate got onto me about it and you know what, I'll repeat myself, just this once. I do not owe any kind of explanation to anyone. This blog is not an explanation, its an exploration of my opulent anger and frustration. And to suggest that someone else made this decision for me? REALLY?! Are you legitimately that dense? My feelings towards this third party are mixed at best, but that doesn't mean you get to blame them for your shortcomings. That's weak.

It's also very dense and I still don't understand how anyone could have missed the actual point there. But congratulations, you managed it! Go grab a medal, seriously...

In closing, you can never be sure of what you're dealing with. And I'll never again launch into anything with anyone I don't know ever again. Even if it is 1am and I'm literally falling to pieces. I'd rather be silent. Silence is solitude. I'm living and I'm learning. Two things you are not.

Am currently imagining a range of personalised insults to finish this off... none of which should be said aloud or written out.

- Sky 

One Morning you Wake Up afraid to Live

And then it doesn't end.

You tell yourself again and again that you can do this. You tell yourself you have to get up and do things because the world isn't going to stop turning just because you've had enough. Life isn't going to just wait for you to be good and ready. You tell yourself that the only realistic direction is forward and because going forward is so logical you're just going to go right ahead and do it.

So I went forward. And I've been going forward my whole life. Because I never really considered properly what would happen if I didn't and what would happen if I did. And in hindsight, I'm starting to wish I'd stopped. Because going forward has only ushered me into a life that I don't understand. It's given me trial after trial and in terms of respite, very little. I wake up everyday with the "I can do this" attitude and every single day is a dodgy surprise. Some days my moods a surprise, some days this rash is a surprise, some days my tendons and ligaments are a surprise, some days my latest illness is a surprise. Every day I lose, and not for a lack of trying.

So over the course of the past few years, I think I've come to fear living. It doesn't often show, but I've realised yesterday and today that this is almost certainly the case. Every night when I go to bed I'm still awake, sometimes for hours, no matter how tired I am. And I'm processing all the horror of the day just gone by. Sometimes its bad enough that I want to ring someone, but 1) I'm not sure who and 2) 2-4am seems like a dodgy time to be ringing anyone. And when I wake up the next morning, I'm scared. And I'm worried. And I'm downright afraid. Even though some of the things I'm worried about aren't necessarily tomorrow.

One thing that's really starting to get me is the pulmonary hypertension. This time in two weeks, I will know whether I'll be sick forever or not. And I want to think positively and believe that it'll all be fine, but in my heart of hearts it just seems so unlikely. In a perfect world I'm just unfit. But the reality of the situation is, I just can't be. I do enough exercise that it simply cannot be the case. So yes, in my heart of hearts, I'm preparing for the worst. I'm preparing to be sick.

It's the worst kind of sick too. The sick the has no treatment at its current level, just regular monitoring. I hate being monitored, as you may or may not have noticed. My intense dislike of monitoring has lead me far from sitting down with any kind of therapist on a weekly basis to talk this out. I avoid therapists because I feel they have nothing -- except drugs -- to offer me. And I do not want their drugs. Drugs are dangerous. Even the helpful ones can and will scar you, if they don't kill you first.

I learnt that the hard way.

So yes, April 24th is two weeks away. But I'm still scared. And even when April 24th is over, no matter the news, I still have months of roaccutane. And beyond that a dysfunctional brain and body that likes to surprise me. And I have friends that leave and ones I wish I'd never met to begin with. So of course I find it hard to trust people. Some people even like to exploit these weaknesses. And I don't want them exploited. So I wake up in the morning and I'm a bit worried, a little afraid.

Because I don't know what's out there. And what I do know repeatedly tells me its not worth knowing. I'm in pain. Something is constantly hurting. Today my muscular pain from a riding fall is sitting prominently on my collarbone making moving my right arm and breathing painful. My wrist is straining to type this, I had a hell of a time completing a practice exam today. I'm exhausted. No amount of sleep is ever enough, I just want and need more constantly. My mind hurts. It makes me unhappy. It makes me grumpy and I don't even know why sometimes. And when I do know I feel its so trivial that I don't want to bother anyone with it because I feel stupid. And I hate feeling stupid. I really just do not want to be this way anymore. I don't want to be afraid. I don't want to fear life, nor do I want to fear people. But I don't know how to change that.

And I suppose, that the thing/s I do to change this will define me, in a way. They will tell me whether I intend to be strong or whether I'll expose my weaknesses once and for all. And, I won't lie, I'm not sure I'm ready to see which direction I'll choose yet either. There's just so many things that are unsure in my future, both near and distant, that I don't know... I don't know whether I want any of it, anymore.

I once made the decision to live. But that was before I woke up one morning and realised I was afraid. I don't know that I want to revoke that decision just yet, but I don't know that I don't either. In the same way I'm afraid to live, I'm afraid to die. There could be nothing out there. And that'd be poor reward for what I've suffered over the past seventeen years. I'm far from having a "life come at me" attitude. And I will be for a very long time. But I'm not happy with where I am either.

I'm not happy with fear.

- Sky

%*&@#$*&^&@!^%!@%#$&$^*&#%@

I've had a very stressful few weeks for varying reasons, some of which I'll not go into on this blog for reasons which will only be known to myself. And all this stress and emotional trauma has led to a constant stream of keyboard mash running through my head. I use this mash in general conversation, that's how prevalent it is. And I still don't have clarity. And though I've made decisions relevant to each point of stress I still feel bad about it. And I shouldn't have to! I did the right things.

I know I did.

It's just a lot to think about. I finally get away from school for a few weeks, but nothing really stops. Same stuff rolling around my mind. Every time I take a step in what I perceive to be the right direction, a whole new batch of questions and problems come to the forefront of my mind and along with them lately, more keyboard mash.

And I'm over it.

I just want clarity. I want to see things clearly. I want to be able to breath. I want to be able to function without counting to ten. I hate counting to ten. I hate that it's necessary. I hate that it works. I shouldn't hate that it works. I don't know why I do. Maybe its the simplicity of the solution. It seems to me that something so trivial doesn't deserve to be so effective. But it is. It works. I can do things that cause keyboard mash to stream in mass proportion when I do it. I hate counting to ten. It's only a temporary fix.

Temporary isn't good enough.

I'm so exhausted. I've been so flattened by the last few weeks and all that they've encompassed that I'm just so tired. And it won't go away. And my mind won't let me rest. These last few days I've struggled to sleep much before 4am and then I don't sleep in much -- the curse of the light sleeper -- and its catching me faster than school did. I can't do this. I'm exhausted. I don't even want to go to work.

And that's serious.

And there's only one week of sleep left. And that's not enough. And there's just so many 'and's' I don't know where they're going to end. I just don't know anything. Though, I do know that my moods have evened out. But when I say evened out, they've evened out into a not-so-happy range. I'm trying, I am, but I'm just not happy. I don't know why and I won't admit its med influenced, but in my heart of hearts I think it might be. And that's a little bit scary. But its not too bad. I mean its not good, but its not bad. That doesn't make sense and I don't really care. My mood is obviously not helped by the constant dry state of my skin. I'm sure I'm defeating the purpose of the med by moisturising, but it really is feral and gross and I'm not leaving the house looking like that. And it itches!

Always at stupid hours like 2am.

The rash has been nothing short of frustrating. The itching, the dryness, the redness. I tell some people that its leprosy for a laugh. Reactions are priceless, every single time. And then there's the joint pain. My knees are being difficult. Very difficult. Very stiff. Mildly painful. But its not good. Not good at all. I'm hurting from minimal activity. So its not what I'm doing and therefore I can't fix it. I hate it when I can't control things.

Roaccutane has stripped me of control. It's stressed me and that constant stress is robbing me of control of everything else. I'm so done with this crap.

I'm surprised this came out as ordered as it did. Feeling like a bit of a boss... take that mind, I can order my thoughts.

- Sky