This is the time - Amelia part 2

This this song reminded me strongly of parts of Amelia's final email to me. She asked her mum to send it to me after she'd died, But her mum sent it to me a few days before so it wouldn't be forgotten in mourning once the machines were turned off (She was already unconscious at this time and not expected to regain consciousness). This is one little piece from Amelia's email to me,..."please remember that there is always someone to inspire and someone new to meet. But you have to be brave. Without my bravery of starting and Instagram account i would not have sister (you) and seven of my closest friends who have all played a role in my journey with AML (Leukaemia)." Amelia knew by this stage that I was ready to give up on the world again and that being in this world was a struggle but she strongly encouraged me to connect with people and showed me that connecting with people really does make a difference and had in her life.

She also talked about letting go of things that you didn't need to hold onto anymore and holding onto what WAS important... "I had to learn to let go. And letting go for me meant that i had to allow things to happen and accepting the present for what it is, although the shitty situation I was forced to accept it was all part of the process of letting go both emotionally and physically." and "For the longest time i wanted to control the situations and had the hardest time trying to let go. It can be hard to let go when tough things stand in your way but times come when you have to step back and let things happen". She encouraged me to move forward and not be afraid of things going wrong but to let go sometimes and just let it happens and other times you can fly.

So like the song says, you want to break apart the walls that set apart you from life whether it be pain, illness, anxiety, holding in trauma, do whatever it takes to let it go and step into life.

The other thing I learnt from the song that reminded me of Amelia so strongly was the notion of having dreams. Dreams are very important, hold onto them, develop them, step into them, don't let them go! Dreams will help you to FLY! 

There is a bridge in this song that goes, "Live like your life is worth dying for" and it is what Amelia taught me. I don't kinow why she had to die so young, I do not know why I'm alive because I think the world would be a better place if it was the opposite way around. But I work on not giving up and reaching out to my supports when I get low (I'm not crazy things don't just change overnight, no matter how much you decide you want them to)....but while I'm living this life I plan to live it worthy of Amelia my guardian angel and my friends and family who love me so much. 

This is the time - Superchick
This is the story of your life 
A movie starring you 
What's the next scene have for you to do? 

Leave the dishes in the sink
Leave your fear there too
Live the story you would write for you

Say hey hey wake your heart
And break break break apart
The walls that keep you from being you
And walk walk towards the light
And don't stop till you live your life
Like someone died for you

This is the time to try
Step out your life is waiting
And as you fall you'll find
That you can fly

This is the time to try
Step out your life is waiting
And as you fall you'll find
That you can fly

You can find a million words
To build a wall of fear
Safe behind that wall imprisoned here
Take that someday step today
To who you're meant to be
And turn your dreams to plans
So you can breathe

Say hey hey wake your heart
And break break break apart
The walls that keep you from being you
And walk walk towards the light
And don't stop till you live your life
Like someone died for you

This is the time to try
Step out your life is waiting
And as you fall you'll find
That you can fly

Ask anyone whose time is up
What they'd give for what you've got
And how they'd live your life
Live like your life's worth dying for
You've just walked out that prison door
And you'll know how to live your life

This is the time to try
Step out your life is waiting
And as you fall you'll find
That you can fly

This is the time to try
Step out your life is waiting
And as you fall you'll find
That you can fly

5 Minutes at a time - Amelia part 1

Last year a young lady Kayley followed me on instagram, as I am, I check out people before I say they can follow me and I have no idea how she followed me but she did and my life was changed forever. I followed her back (something I don't automatically do) and we got to talking. Firstly just in responses on posts, then in DM's and then by email....from approximately the start of May last year (2015) I started writing to Kayley almost every day by email. See this girl had Leukaemia and was really sick. The entire time I knew her she was in hospital. To be honest, what started us talking privately was that I wanted to buy her a colouring book! We worked out how to get it to her but then the first of many hurdles in my time came along and she was on the ventilator....her parents not knowing whether to turn it off or keep fighting...things weren't looking good. But she is an absolutely fighter. So after a bit we exchanged our REAL names and hers is Amelia Kate. Perfect for her :). Amelia was only 16 when I met her but she had started towards her dreams of working in the medical field as a paediatric nurse or doctor. I would email her just about the randomness of my day trying as best as I could to be supportive but also bring a little of the outside world into the ICU where she was caged. She fought so hard every day, in so much pain and so sick and so many struggles, but she kept going.

She was of huge encouragement to me, wanting to know what I was planning to do with my life and what I was doing to get there. She believed in me. She believed I could do it. In her final letter she told me not to close my heart but to keep reaching out online because I had made a huge difference in her life. And so I have. I don't know what differences I'm making, I'm just trying to believe that there is a difference being made. It's so hard to believe that we can make a difference in the lives of people we've never seen face to face but I can tell you that she was just as much my sister as my actual sister. In her final email to me she wrote that she had hoped that I would meet her face to face on this earth (and how I LONGED for that too) but that apparently God had different plans for us. So she's with the faithful now watching over me in the cloud of witnesses.

Amelia died on the 16th December at 5pm when complications from the leukaemia claimed her life. All day I felt my heart breaking waiting and hoping for the message that a miracle had come through and she had survived but knowing that it was so highly unlikely. And I miss her. I know she is in a better place but I miss her.

So what now? Firstly I heard this song on my iPod which I played over and over again.....for so many people for so many reasons, looking at a whole day is too hard, this song talks about it just being 5 minutes at a time and that is how I've survived so far, just 5 minutes at a time.

5 Minutes at a Time - Superchick
Life is hard, but it's been a little harder than usual lately
I wish I knew why I am struggling through this
What makes it harder is the lack of understanding on my part
Could I have changed this, why am I fighting life so hard?

How long can I survive this? I'm losing the strength to try
Tell me how am I supposed to live through this? How do we get by?

We take one breath and let it out
We take another and maybe somehow everything will work out to be just fine
We take life 5 minutes at a time

One breath and let it out
We take another and maybe somehow everything will work out to be just fine
We take life 5 minutes at a time

Life is hard - it didn't turn out like I hoped it would be
And I don't dare to dream if dreaming leads to this
'Cause when it's left to me, it's hard to see past the sky becoming dark
If it makes no difference, why am I trying to do my part?

I've climbed back from that fall again it feels like a hundred times
How do I believe in a hundred and one when we stumbled the ninety-nine?

We take one breath and let it out
We take another and maybe somehow everything will work out to be just fine
We take life 5 minutes at a time

One breath and let it out
We take another and maybe somehow everything will work out to be just fine
We take life 5 minutes at a time

To go on living when all you've lived for is gone
To find faith when everything you know about life might be wrong
To find hope in the dark, to still believe there's a dawn
This is the courage to make a life, it is the strength to go on

We take one breath and let it out
We take another and maybe somehow everything will work out to be just fine
We take life 5 minutes at a time

One breath and let it out
We take another and maybe somehow everything will work out to be just fine
We take life 5 minutes at a time

Life and death and the inbetween

So I was going to write about singleness and marriage and I'll get there but I just watched a story and now I have two topics I'd rather talk about, one I've talked about before but needs talking about lots so you get to hear it again, the other is new.

I have this general philosophy that I try to tell people (when I feel the timing is right) the things I believe they should hear if I was given a death sentence. I don't want anyone to miss what is important and what *I* believe is my contribution to maybe what is important in their life....even if they don't need to hear it when I think they do, I hope that they'll remember it when it does become important. As part of this I set up a scrapbooking project to write some letters...the project is still underway. But just now I watched a video on a teenager dying from cancer and what he's learnt is important to him. It's a great video and I'll give you the link in just a second. He talks about how we just need to help people be happy. I kinda agree with that but I also think that really, here we do what we're meant to do....sometimes its actually not about being happy, sometimes its about just being a shoulder for someone to listen to, sometimes its about giving away a compliment to a stranger on a train (yes I do do that), sometimes it's just about living your life in teh fullest way possible whether someone is watching or not...you never know who is watching around a corner and the Lord of All is always watching from above.

When the earth was created, it was perfect. But we're told heaven is amazing, perfection complete...but its not perfection because it's got better trees or streets of gold or anything like that, its because the Father, the Son and the Holy Spirit reside there....yes they are here on earth but its different, there there is NO sun! That's right NO SUN! THEY light up the world. But because this earth was once perfect, even though its broken now and run by broken people (which we all are), we can still see glimpses of heaven and for me I think that comes from doing what we're meant to do in life, whether that's making people happy, being a light to someone else in a dark time, being a shoulder to cry on or just plain being an example of self love and acceptance (yes an irony coming from me - but I AM working on it).

A wise man once told me to not try to rush out of earth because earth is actually a pretty good place. Oh the irony. Now if this came from someone with no lived experience of darkness I'd probably just have ignored him, but he suffered depression, major depression, while in a different country, while studying the Theology of Joy (oh HIS irony in that!) But through his learning about joy, coming back to Australia, taking me under his wing and teaching me....I learnt that God didn't create me because he HAD to or because he got bored one day and thought, "Oh I'll create Anya today" he created me out of JOY. Not because I had to be anything in particular but simply because I was His, His joy - His joy on this earth. Now I get to live on this earth and my gift back to Him is to a) try to be joyful in all that is given to me and b) try to do all he calls me to, something I do struggle with. I don't know why God brings us into this earth before we go to heaven, I just do not know but I know that I need to stop seeing earth as the enemy and start seeing the good parts that are there as best I can, one bit at a time. I'm better at this sometimes then others.

I will say, having me/cfs makes me realise something though, as you watch Zach's video I think that he looks like he has so much energy and he has awesome family and friend support so it's easier for him. Easier for someone dying? Are you kidding me I can hear you say! But when you have NO energy and little family support it IS harder, it IS harder to be brighter every day and it IS harder to exist, to see the good stuff and to participate in life...but not impossible. I think sometimes we need to just change our focus a bit and not focus on what we can't do, which may be a lot but focus on what we can do....even if that is learning one french word a day! Or sending one short message to someone to remind them that we're thinking of them, loving them and care about them. So many little things we cna do even when we're exhausted, worn out or just too plain bogged down in the difficulties of life and/or physical and/or mental illness. We can all offer something, even if its truth, we can all ofter people a kind welcoming heart, we can all offer a smile even if its weak and difficult to produce.

After you decide whether to watch Zach's story or not (it's 22 minutes long), I have put in a video by Carrie Underwood. It talks about how we'll see people again. Part of the video indicates that we'll see people again in this life time like an appointment a dear friend of mine has in Haiti with a beautiful baby girl Alaine (check out OperationLoveAlaine on Facebook for more information) or whether it's when we see people again in heaven. You might not believe in heaven, you might be undecided....I can't say what hell is like, but I DO believe in a God that has the capacity to save everyone, even those people we do not think should be saved...I also can't say whether that will happen or not, I just am saying I believe in a God who has the capacity to do that and therefore we may see all our loved and lost ones again). I hope you enjoy it.

Anyway, here is Zach's story
http://www.youtube.com/watch?v=9NjKgV65fpo&feature=youtu.be

Carrie Underwood - See you again
https://www.youtube.com/watch?v=vTnWFT3DvVA

Lyrics...
"See You Again"
  Said goodbye, turned around

And you were gone, gone, gone

Faded into the setting sun,

Slipped away

But I won’t cry

Cause I know I’ll never be lonely

For you are the stars to me,

You are the light I follow

[Chorus:]

I’ll See you again, oh

This is not where it ends

I will carry you with me, oh

Till I see you again

I can hear those echoes in the wind at night

Calling me back in time

Back to you

In a place far away

Where the water meets the sky

The thought of it makes me smile

You are my tomorrow

[Chorus:]

I’ll See you again, oh

This is not where it ends

I will carry you with me, oh

Till I see you again

[Bridge:]

Sometimes I feel my heart is breaking

But I stay strong and I hold on cause I know

I’ll see you again, oh

This is not where it ends

I will carry you with me, yeah yeah

[Outro:]

I’ll See you again, oh

This is not where it ends

I will carry you with me, oh

Till I see you again

Till I see you again,

Till I see you again,

Said goodbye turned around

And you were gone, gone, gone.

Relationships versus social isolation

I was listening to the radio the other day and they were discussing a meta-research study (a research study that combines the effects of a lot of other studies that are deemed to fit inside the relative criteria) of 140 studies that looked at 300,000 people. That is one large sample size and thus worth considering (even though I cannot verify the states of the study in order to justify its sampling processes). In the study they found that people who faced social isolation (so having few connections with people in general) had the same risks to health as those people that smoked 15 cigarettes PER DAY. WOW!

I go on and on and on here about how we are meant to help people and even more importantly how we are to be helped BY people. So often I read about people who feel so very isolated and end up feeling that they need to do recovery by themselves. One friend at the moment is struggling so much, she is in hospital facing feelings that she has rarely experienced in the manner she currently is and she is feeling very cut off from her normal social networks, whether she realises it or not she NEEDS those people. Its not even that she wants them, she NEEDS them, for recovery, for her health, sanity and otherwise. Another friend had some news that took her almost a week to tell me about out of fear, fear of rejection, fear of being misunderstood, and just plain old shame, shame for what was happening, shame about what was going to happen. It was a struggle. She had some workers that knew her situation but she didn't have FRIENDS, true good hearted friends that knew. She was isolated and alone and it really played with her health, with her recovery. Another friend has been struggling because of the environment she was in, it wasn't her fault, it was a choice she made towards recovery, it was a good choice, but yet again it left her vulnerable and scared. Another friend has been having troubles with family. She loves her family dearly but the way they make her feel, it isolates her and she has very very few friends to whom she can turn to, talk to and KNOW that she'll be understood, not judged even more then she already is. Isolation has really harmed these beautiful lovely people. They are trying their hardest but find themselves in circumstances where they feel isolated and lonely. These people are also trying to reach out to people and to various extents are finding that hard in itself....imagine how much harder and how much more difficult it would be if they had no one to turn to?

Then there is me. I'm lucky, I have amazing people I can talk to, I have people that love me and accept me and I do actually practice what I preach and let people help me, I let people in. Not always straight away because I'm not perfect and because sometimes other people's needs come before my own. Last night I found myself falling into a pit of despair quite rapidly. My natural reaction was to bunker down, take some PRN (as needed) medication and batton down the hatches....instead I took a risk and called someone who knows me very well, someone who would and DID listen to me, someone who'd JUST gone to bed but got up and spoke to me for about an hour. It wasn't just me whinging and crying on the phone to her, it was also her talking about HER and the interaction of BOTH is exactly what I need. See we need people in our lives and we need to let them help us out (15 cigarettes a day damage to our health is a lot of damage every single day!) but part of letting them help us out is also learning to listen to them because while we can whinge and vent and cry and so often we need to do that, we often need some distraction and a bit of loving of another person to help get us out of the pit we find ourselves in.

One of the very first verses I learnt thanks to my friend S was that God will take us out of the sticky mud and onto a solid rock (Psalm 40: 1-2 paraphrased)....some translations refer to it as the mud and mire or the clay....but I like the sticky mud cause have you ever tried to get clean when the other person is as dirty as you? It's pretty tricky. You need to get up and then get washed off with clean water, another person can be our clean water. They can love us, empathise with us, help get us a bit more fit for duty by talking about them, distracting us for a bit, giving us something to laugh over or just plain old consider and then they help us shoulder the load. What I needed to talk about last night, I could've called my psychologist or my psychiatrist, really the only two other people that have a clue about this topic, but I needed a FRIEND. I needed someone who knew me and loved me and knew how to help me. This friend knows in very very basic detail this story and one day she'll know more but she knew enough and she knows ME well enough to know what I need. Friends like that don't happen over night.

Friendships like this take a lot of time and a lot of communication. We need to talk about what we LIKE when we talk, what HELPS, what is UNHELPFUL and what drives us CRAZY. We need to be open and honest about our reasons for a phone call or a visit....sometimes we don't need to talk at all, sometimes we just need to watch TV together! Sometimes we need someone to help us unwind, sometimes we need someone to ground us. And different people have different roles in our lives and that's okay too. Some people we talk to more when we're distressed, others when we need a fun time, some more in an emergency and some when we need a distraction. None of this is bad the point is that there ARE others. One of the most important things in building a friendship though is forgiveness. Why? Because everyone is human, even the professionals that a lot of us see because we need their help. Everyone is going to make mistakes, everyone is going to hurt us (hopefully unintentionally, but sometimes intentionally with our best interests at heart and sometimes intentionally without our best interests at heart, at which point we should be forgiving but maybe also reassess the friendship)....without forgiveness and the willingness to sort things out and give someone another go, we wouldn't have friends. And as much as need need to be honest about OUR needs we also need to be willing to listen to THEIR needs. It goes two ways. Even with professionals. In general a professional is the one that should be keeping certain things afloat but we shouldn't assume they can mind read, we shouldn't assume they can guess our stories or our needs etc, we need to consider that they also need holidays and no that isn't abandoning us, that they get sick, that they have education sessions to attend and sometimes they need to fit another client in, things happen. So friend of professional we both need to communicate our stuff to them and all them to communicate their stuff to us.

Lets not be those people that are unintentionally destroying our health 15 cigarettes worth a day....there ARE good people out there, even in our worst most depressed state. Hang on to them and be willing to both love and be loved for in being loved we're also giving people the opportunity to reduce their own social isolation too. It all works both ways.

A tribute to Dina

A week and a day ago my family faced a very sad day....our cat of 19 years, Dina Dominique, died in my arms after trying for about two weeks to save her life and give her some extra quality of life. She deteriorated so much it was very sad, all three of us were crying...

We got Dina a few months after going on holidays as a rescue cat from the shelter when she was about 6 months old. She was super skittish but she'd definitely chosen us as her family. She did things to prove this like walking the edge of the tops of hedges (that should BEND) with TWO bells on and STILL catch birds and then deliver them happily contributing to her new family :). She's always been prim and proper but she's always loved cuddles, she loves prayers, she understands when you feel like crap and want cuddles but she totally has her own mind. She was a tabby cat, white with a few tortoiseshell markings on her. She was thin and agile and reminds me of a certain kitten I fell in love with (her name is Zoe).

Dina came into our home after we had to say goodbye to the cat that tried to kill me (out of jealousy) when I was little, Little One.... I loved Little One...I carried Little One in my arms and to the vets after she had been run over and helped her with her awkward convalescence.... we missed Little One a lot and inspite of my father being allergic to cats, Dina came home and she got her name after two gymnasts Dina (from Russia) and Dominique (from the USA) for her agility and ability to seemingly get into crazy small spaces.

Awhile later we bought home a kitten at 6 weeks old, Cara, and Dina had to get used to sharing her family...not too happily to begin with...she was terrified of this tiny ginger kitten and would hide in the bathroom! Eventually they talked and on one of the times that Cara ran outside (and they're both indoor cats), Dina was pacing and very unhappy with this situation....we couldn't find Cara and in the end we let Dina out and SHE found her little sister...and boy oh boy did she give Cara a talking to. Needless to say, Cara doesn't really go outside anymore, Dina would LOVE goign outside (on a leesh) but Cara flops onto her side or just gets the back door and looks blank like "why would anyone go out there where you have to WORK instead of being pampered and spoilt inside!" They loved each other and I was very worried that with Dina dying, that Cara wouldn't cope....my mum and sister both believe that Cara knew and said her goodbyes and she's going okay.

But anyway, Dina was so unwell, so so unwell....she's lived with my sister for the past 4 years because we had to move out of our childhood home and I've missed Dina (and Cara) like crazy. How I wish I could've had her live with me...except my housing situation doesn't allow for it right now and I don't think I could've taken them away from my sister who needed their company as much as I did. Now my sister's housemate loves the girls as much as we do which is good, its nice that they've had a good home. But even after being away from her for four years, I feel her absence more keenly because I don't get to see her again until we meet in eternity...Dina and Little One together... I just pray they're keeping each other together.

So last Monday, we took Dina to the vet, my sister couldn't hold her (she's not great with unpleasant situations), mum was holding my sister and I had the honour of holding Dina which is exactly what I wanted to do. She died almost instantly and I held onto her for at least five minutes afterwards. Now she is buried down at my grandparents house with the beautiful (and muchly valued) miniature rose I was given by a dear friend during my recent time in hospital...it was the only gift I could give her that was worthy of her life and her sacrifice for being there for us for so long (and the tears are about to start streaming down my face)...

So here is a picture of my beautiful and beloved girl...