Quotations

We do not return from the journey into pain and illness to the same house that we left. We have become more and the house we will live in will be more as well, for however long we may inhabit it. -- Rachel Naomi Remen

When all else is lost, the future remains.-- Sandy Blythe

Life is living through the problems, and dealing with them, but not paying so much attention to them that everything else is drowned out.-- Trish Lynch

You are a person with a condition, not a condition in a person's skin. While it's hard to remember that sometimes because of what we go through - personally, as well as with those who don’t understand - the only way to beat pain emotionally (even if you cant physically) is to accept that it's not YOU, it's just there. It’s a part of your life, not your being.

Be not afraid of going slowly. Be afraid of standing still.-- Japanese Proverb

Your journey has molded you for your greater good, and it was exactly what it needed to be. Don't think that you've lost time. There is no short-cutting to life. It took each and every situation you have encountered to bring you to the now. And now is right on time. -- Asha Tyson
“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”

Our health always seems much more valuable after we lose it.

Time and health are two precious assets that we don't recognize and appreciate until they have been depleted. --waitley

“after a while you learn to build all your dreams on today because tomorrows ground is too uncertain for dreams and futures have a way of falling down”

'We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way.' ~Author Unknown

Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are. ~Arthur Golden

Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel

There is no ghost so difficult to lay as the ghost of an injury. ~Alexander Smith

Nothing prevents happiness like the memory of happiness. ~André Gide, L'immoraliste

It is in moments of illness that we are compelled to recognize that we live not alone but chained to a creature of a different kingdom, whole worlds apart, who has no knowledge of us and by whom it is impossible to make ourselves understood: our body. ~Marcel Proust

Without adversity we cannot grow and appreciate life, for it is the tough times that molds and creates a person. How can one see past the superficial to what is truly important, how does one grow? There is no constant in this world, only change. We develop through change. We learn through change. Do not fear adversity, embrace it Life is unpredictable. Tomorrow is unknown. What changes await us? Embrace change and learn to be a better person for it. Embrace change in order to teach others who are going through rough times. Embrace change as growth. Adversity is change. Life doesn't have to end because of adversity.

That some good can be derived from every event is a better proposition than that everything happens for the best, which it assuredly does not. ~James K

We are all mortal.

We are all dying. It’s the only thing we know with all certainty in life. Of late, there are times I lie awake at night simply trying to comprehend my own nonexistence. One day we will die, and life will go on without us seemingly unaware that we’re no longer there. The world keeps turning, night becomes day and day becomes night, life on Earth continues but none of it will exist for us. We won’t be there to see what tomorrow brings. Yet, nothing really changes once we’re gone. Those who knew us will grieve and let go, and we’ll exist as nothing more than a memory that lasts their lifetime. With each generation, the memory of us fades. Eventually, our memory will not even hold its mark in this world. One day, it will be like we were never here in the first place.

So I lie there, and close my eyes, and try to comprehend my own nonexistence.

It’s impossible...
and something else I won’t exist to see, in the end.


(I think too much.)

-

I can't believe its December. This year has been nothing but a blur. I actually can't wait to wave goodbye to 2008, which is unusual for me since I usually dislike it when each year comes to a close. I'm a bit sentimental in that it makes me sad that it will never ever be that year again, but this year all I am is glad.

I have one exam to go and an essay to do, then that's it. I never have a clue what to do with myself during the holidays! I honestly enjoy classes more than holiday time, that's probably a reflection of how much I love and enjoy psychology.

Everything has changed this year.

For you, Deon

before midnight comes and the days is over;

For you, Deon;
I wonder who you'd be today if you'd had the chance to live your life. Its your birthday today, little brother. Just thinking of you and how another year has gone by, another year that you should have been older.You wouldn't be so little anymore! We'll have a cake (you'd better like chocolate!) if you promise to come blow out the candles?

I remember when I was little and we used to release balloons for you each year, for your birthday or anniversary. I'd like to do that again for you. I remember how I used to see you sometimes at night in my bedroom, I used to believe you really did come to visit me, slightly older each time and we'd talk for a while. It was our little secret from mum and dad! How I wish the imagination of a child was true. I wish I knew what happened to us after we die, then I'd know where you are and if I'll ever get to meet you again. I'd love to believe that but I'm scared we just end and only go on in people's memories. I remember you, I always will, I am so glad I have those memories of playing nosey nosey with you! As scary as it was being a little kid, I'm glad I was there with you. Every time they bring up brain damage in psych I'm the one with tears in my eyes for you.

I hope that somehow you knew we were there by your side, that you could feel our love and how much I wanted you to live so we could play together. Things would have been so different. It just isn't fair that you're not here to grow up with us, I wouldn't have been the odd one out dark haired and olive skinned one if you were here! People wouldn't have accused me of being adopted all the time :P

I love you and though I'll always wonder who you could have been, you'll always be my baby brother.

PS.You owe me a few million siblings fights!

Photographs.

Looking through photos just from this year, it’s crazy how much things change so quickly. I could not have known just how much this year would change me. Friendships have been lost. Some, friendships I thought would last forever. Other friendships have grown closer. Trust has been completely shattered. Those closest to me will understand the meaning behind that. I’ve been overseas and literally fallen in love with Ireland and Paris. I met all my Irish family and it felt amazing to become part of such a big family. I cannot wait to go back next year.

The girl in those photos from the start of this year, I hardly even recognise her. She feels so far away from who I am now. Everything is just so different.

Blows come and they come.

So much has happened since I last wrote.

I've had 3 appointments with the physio now. Its going well, she explained some of what's going on with my body and the pain in terms I could understand - none of that doctor talk that I zone out to haha! I also started hydrotherapy this week and it's really exhausting but the warm water is heaven for the pain, so the price I pay after even out for the good it will hopefully bring. I really need some good.

It's the holidays now and I planned to try and get so much of my work done, to see if I can give myself a chance at making it through this semester only, (and i hate to say as usual, but -) as usual, another blow has come along to make things that much harder. I've never been to clubs, I've never been able and nor would I want to even if I was healthy... but it was someone who was a good friend of mine's 21st on Friday and everyone at the party decided they wanted to go out so off I went. Biggest mistake. My drink was spiked. Thanks to 2 old school friends the guy, who turned out to be 2 guys, didn't manage to get me out of there and they got me away from him thank god. I spent the night unconcious in hospital, having seizures, but it could have been so much worse. So I have crashed badly, nevermind... meh.

Leaving out all the details, because I won't go blurting things out on the internet, someone I thought was one of my best friends is no longer a friend. Its better to find out who your real friends are, as deeply as you might be hurt.

So I've got nothing done for uni at all so far, one week to go still...

I think I have the appointment at the gosford hospital pain clinic next Friday, I'm not sure, I've been waiting long over a year for it (closer to two) but it means going through everything all over again. It is so tiring...

On a brighter note I'm trying to get my rabbit Pixie pregnant with Benji, they're both like little dalmations and would have the most adorable babies :) Though I wont be keeping any of them if it happens.

When I got to uni this morning I was a little late and felt quite tired and when I walked in my mind couldn't keep track so I decided to lie out in the sun for a while instead. :)

I had my first appointment with my new physio this afternoon, she seemed lovely. Hopefully it will bring some improvements - I'll be happy with just the tiniest bit! I finally feel like I'm going somewhere, little bit by bit. It's so good to have found people who know what they're talking about who are on the coast! Hopefully I'll be able to catch up with the Sydney pain clinic once I have the chance, my timetable is impossible this semester but I would like to see them again just because they were very good.

I wish I could get uni on track, I guess all I can do is ask for more time and if they won't allow it then there's not much else I can do. It would just feel like such a waste, to watch a whole year of study and effort go down the drain. Fingers crossed.


I like watching the wind in the trees, imagining all I could do with a blank canvas, day dreaming and looking over old photographs realising that it feels like just yesterday.

Things are hard

I am about to fail out of uni this semester and there's nothing I can do about it. I am trying to hard but have been getting nowhere. Uni means so much to be, I cannot handle the thought of having wasted and entire year after all the effort, all the hell I have been through.

As bad as things are, there is always something beautiful to be admired.

Last night there was a red moon rising over the ocean, so I took my camera down there and took photos, just sitting by the ocean watching the waves crashing on the shore. The ocean was glowing red. It's amazing, the world really is amazing. That's what keeps me going through the hardest times.

The smallest of things give me hope.

Too optimistic?

"Life is not meant to be easy, my child; but take courage: it can be delightful."
- George Bernard Shaw

It takes courage to see the positives in all that life throws at you. I am learning, still learning, to be able to do this. I seem to be drawn towards the positive side, as a friend pointed out last night. I suppose that makes me an optomist. Sometimes though I think I need to take more time to stop and acknowledge the negatives, I seldom aknowledge them as much as I should in order to deal with them. I choose instead to laugh things off, say "at least I've learnt...", make light of a situation when there are times you do need to cry, be angry, shout, yell and scream about how unfair and terrible something is.

Pain

The pain swallows me whole, I was seeing double in class today and passed out on the table because it was so bad. I get embarrased because it either makes me so out of it, or I start acting hyper and crazy to try and compensate.

I had the doctor today, new medication, new physio referral, just got to keep on trying until we find something that helps. Something that at least gets it down to a functional level. I had the osteopath as well.

I'm so tired...

All I intended to be

All that I intended to be, is lost to the past.

Sometimes I can't stand seeing the world around me, this place that I live in. Everything is a reminder of the 'healthy' me, the 'old' me.

There, over there, that's the street I used to ride my bike down, the wind in my hair, complete freedom – the same street I rode straight into a pole and lay laughing on the ground, my friend laughing with me until our tummies hurt so much we could laugh no more.

Everything is a reminder of the 'healthy' me, the 'old' me.
Sometimes I cannot stand it, it drives me insane.

Outside my window, looking out from the bed I'm forced to spend so much time in, there's my street, memories of walking – or running – down there with my surfboard, body board, or just a towel with my best friend desperate for a swim to escape the harsh summer heat.

We were once in separable...

There, there's my school. The school where I was both the 'old' me and the 'new' me, I am no longer sure who is the real me. All that I ever was, it was stripped away from me overnight. We'll drive past while kids are dressed in their PE uniform running the cross country course. It is like a stab to my heart, every time. In them, I see myself. I see my old self running, like a ghost from the past.

Out the back, there's my garden. It's there I used to let off steam in the afternoon shooting hoops. Kicking a ball around, mucking around with friends. It was so normal to have endless energy.

There, there's the beach. The beach where I spent every afternoon after school, swimming, getting smashed on the surfboard, sucked out around by the whirlpool that appeared in the early evenings. The beach I ran along at 6am in the morning before school, watching the sunrise over the ocean.

I want to erase it all, these ghosts of the past. Sometimes I want to smash it all to pieces, get as far away from here as possible, because the anger and hurt takes over and I feel like screaming that I cannot take it anymore.
Illness changes everything. It steals your identity. It stole my teenage years, ripped them away, over before their time, it's stealing my youth, out of my control. You find out who your real friends are, it hurts so much to lose people who you once considered your closest of friends.

I want to live what most take for granted. Study full time, get assignments done on time (even if you start them the night before), achieve marks to my full potential, be able to go out with friends, have a job, drive a car, do all those priceless things I took for granted all those years ago, back when I was healthy, luckier than I knew. I want to be able to get out of bed every day, I want to feel alive, I want to be free of pain. Just the pain alone is suffocating me. Pushing me to my limit.

I would do anything for just one more day of health, just imagine the things I could do!

All that I intended to be, is no longer what I strive to be.
I want to be so much more than I once intended to be.

The grief for what I've lost over these years will never leave me, it will always hurt, but I've let go. Not completely, it surfaces from time to time, without warning, but I know that after all I have been through I am better for it. Life seems so much better on the other side, the girl that I was, she wasn't the lucky one – I am. Not that I can always see it.

If you have your health, don't take it for granted. It is more precious than you can possibly comprehend until you've lost it. Please, never waste it.


Sometimes, I do get sick of having to put on a facade to the outside world, to conceal the hell I deal with everyday being in my own body, and the behind the scenes that no one gets to see. People can't understand what they can't see, they can't understand how ill you are if its not visible, if they only see you when you're able to get out of the house, they can't comprehend that you're in agony everyday when you look just fine. But still, I prefer to just smile and get on with things. I hope through my writing though, people can understand it just a little more... even the invisible.

The continuing battle

I feel like I'm in a constant battle between my body and my willpower. I WANT to get all of my work done, make it through a day of uni without passing out on a bench somewhere for hours, go out with my friends and have fun, play with my pets and chase them around my garden... but I can't. No matter how hard I fight my body, I have my limiatations. I have so much accepted them over these past five years, but then I haven't, not entirely. Sometimes, i just want to SCREAM. I am desperate to do so much, but my body won't let me.

I still feel like an energetic, sporty, lively, active person. It is just my body that fails me, stops me being who I feel I am. I want to grab a surf board and run off across to the beach, I want to go for long runs... but my body can't acomplish what I yearn to do so much.

I was trying to write yesterday in class, but my brain wouldn't communicate with my hand. It wasn't the pain that stopped me, no, I'm just retarted and couldn't get my hand to do what I wanted it to do. It came out as scribble, then I couldn't even manage to grip the pen. I can't even describe the sensation that I feel when it happens. It's something that is worsening with time... whether its connected with the accidents, the injuries from them? or my illnesses? I haven't mentioned it to my drs, my GP knows nothing, specialistists are too far away and I can't manage the trips, and I'm over discussing the things wrong with me anyway. I'm over the whole lot of it. And it's all so invisible. I love the fact that I can hide the fact I'm sick so well, after 5 years of practice hiding the hell going on in my body everyday I could be an actress haha. But then I HATE the fact that I look fine, because people do not understand what they cannot see. I want to be independent. I want to drive, have a job, god just to be able to get my own food every day and do things for myself without having to rely on other people. To have the energy to have a shower every day, not spend every other moment of my life crashed in bed just because I've gone to class that day.

The pain is unbearable to :(

One day in my body

Thursday, April 19, 2007

I am trapped, trapped in this sick body. My prison, my hell, my living hell. Helpless, suffocating. There is no escape. My mind, however, can never be trapped. Thoughts wander, happier memories, better times. Running, feet pounding upon the earth, rhythmic, control, freedom. Absence of limits. Laughter filling the air, pure, unburdened happiness. Happiness that doesn't know the sorrow of things lost. The life lived in the absence of health.

It can't be happening, not to me, things like this don't happen to me. Wake me, please wake me from the nightmare, tell me its okay. No more comfort, nothing's safe. Realisation. I'm not invincible, not immune, there's no such thing. Youth is not an armor of invincibility. Bad things happen, and they can happen to me. They did. Beyond comprehension. Unreal, reality's unreal.

The clock on the wall; tick tock, tick tock, tick tock. Struck down in my prime, life on hold, but time doesn't stop for one. No, it doesn't wait. We're nothing more but specks in the timeline of this earth. I watch. Seconds become minutes, minutes hours, hours become days. The pages of the calendar fall away. Days turn into months, months into years. The years, years keep trickling by. Escaping me, come back, oh please come back. Come back for me. Where did time go? I'm missing too much. How is it that I ended up here? It was never supposed to be this way.

A new morning, a brand new day. There's no fresh start. Drained. Heavy body, a heavier heart. Youthful exuberance; gone. Pain and illness, pain and illness, day in and day out. Day after day. A never ending cycle, every movement has it price. Ask myself, is it worth it? Is it worth it? A week in bed, for a day of life. Payback. Is it worth the price I'll pay? The difference between wanting to do something, and being able. Balance is the key, balance is the key. I can't do this, but I can do that. Focus on the bright side, what I can do rather than can't. Positive, positive, positive. Just stay positive, keep on smiling. Can't let this rob my happiness. It cannot take my happiness.

Identity, stripped naked. Raw and vulnerable, left so raw, so vulnerable. So empty, weary and lost. Ability robbed. Farewell to life as you know it, farewell, farewell to the person you are. Farewell to all that you love, farewell to your future envisioned. A thief in the night stole my youth, stole my life. Everything's different, alien, unfamiliar. Who am I? Who I am with all that I knew, all I defined myself by, gone? Emptiness. A shadow of who I was, just a shadow, a shadow of a life once lived. I am but a shadow. Start over, find myself again. Who I am now? Discovery.

Guilt. Guilt for what I've put everyone through, for not being able to do things, for needing extra help, for being a burden. Guilt for failing, for lost potential, a bright future diminished. Expectations. I let them down, they'd deny it, but I did. I let myself down. Shattered dreams, nothing is how I thought it'd be. Plans mean nothing, not really, you can't plan for anything. My plans were destroyed in a flash. Spinning, my head is spinning. Too many emotions all rolled into one. Anger. There's no one to blame, no one to be angry with. Beyond my control, beyond everyone's control. Sadness. Grieving for what was, and for what might have been. Learn to let go, I have to let go. Move on. Let go of the life I'd imagined [this is too hard]. Make the most of this card I've been dealt.

Pain; screaming, throbbing, jabbing, aching, piercing. Attention seeking agony. Never goes away, never shuts up. Always there, like someone screaming in your ear. Constantly, all day long. An intruder. You fight it, a constant war. A battle for your sanity. A daily fight to function. Must concentrate; pain here, pain there. Can't focus; pain, pain everywhere. Impossible. Drowning. Everything's so far away, watching the world through a mist. Isolation. A vortex of misery, threatens to obliterate all traces of happiness. No, I won't let it win. Pill after pill after pill. A little relief. Focus on something else; ipod listening, flick my fingers, twirl my hair, bite my lip, click my pen, count to 10 again and again and again. All while trying to hide that I'm in pain. Distraction. Imagine a far away island; feel the sand between my toes, water dancing around my legs. Feel anything but the pain. It will never take over, it will never win. I am stronger than that. I am stronger than pain.

Strength. I'm not that strong, not like you think. I never chose to deal with this. You don't get given a choice in it. Fall apart, or try to cope. I try so hard to take it as it comes. Sometimes it just gets too much. Sometimes all I can do is cry, alone in my room I let myself cry. I never let anyone see, see how hard this really is, I wouldn't want them to think I am weak. But no one could cope with this perfectly, a smile pasted upon their face. Not you, not me, not anyone.

Watching them, healthy people, living so effortlessly. Walking, running, skipping, dancing, moving like it's second nature. Without pain. Without limitations. Without a second thought. I'm jealous, so sick with jealousy, green with envy. Oh if only they knew how lucky they are. If only I had known. I wouldn't have taken a minute for granted. Not even a second would I have wasted. Health is so precious, so valuable. Like most things, value is realised once it is lost. In absence of health, value is found. I only wish I could have known.

They can't see it, they can't see it. Only I can feel it. Invisible. How to explain something so invisible. I wish I had the words. I don't look sick, I might seem fine, but I'm not the same as them. I can't do the things they can. Only see me at my best, never at my worst. Never when I'm bedridden, can hardly lift my head. Isolation, so isolating. Everyday is a struggle. If you could spend a day in my body, maybe then you'd see. A day in my body is all that it would take. I could write forever, but I can never really show you how it feels to be me.

I'm still learning every day, to deal, to just get by. Health is all I hope for. A dream I'm holding onto. Sometimes hope is all you ever really need. All I can do is hold on tight, keeping hope alive.