DREAM BIG!

"Everyone is blessed with an imagination. Some just know how to use it better than others. Developing your imagination takes some effort. Don't quench your creativity with thoughts of "I could never do that," or "that's impossible," or "Maybe some other day." Let your mind dream big. Brainstorm, just letting your thoughts run rampant. You may even hit on something that will change the world!

Don't settle for premade, premeasured, prepackaged life. Keep your friends and family guessing what you'll do next. Make life an exciting adventure for you and for them!"
                                            
                                                                - Luci Swindoll

Brain Tumour No More......BUT!

On the 3^rd of October it would be 19 years since I was diagnosed with a brain tumour, and 19 years of living with one, but it’s not any more. Yes, it is 19 years since I was diagnosed, but earlier this year my oncologist told me that he could find no evidence in my MRI scan of any form of malignancy or malformation and that I no longer have a brain tumour.

For me this was extraordinary news and it took me many sleepless nights trying to process it. I kept thinking about the fact that for 19 years I have said that I have a brain tumour, but now could say I had a brain tumour. Even though there is only two letters difference in those two words, the difference in my mind has been huge.

Though this was extraordinary news, what was extremely hard about it was that in spite of my no longer having a brain tumour, the reality of living with constant pain and headaches would not change. Where there once was a tumour, there was now a bundle of scar tissue, this was caused by the 10 lots of neurosurgery and radiotherapy I have had. I was told that this was the cause of my pain and headaches and they would remain with me for the rest of my life. Scar tissue is removable surgically but only if it is in an operable location and as my tumour was always inoperable so is the scar tissue.

So even though the news about my tumour was incredible, it was really hard and a real disappointment to hear that this wouldn’t change my everyday reality of pain and headaches. I felt torn between wanting to celebrate the fact that I no longer had cancer, but also felt really gutted about the fact that my life actually wouldn’t change.

To no longer have a death threat hanging over me is a huge weight off my mind.  It means that when I have a flare in symptoms that used to be a possible indication of tumour growth, I no longer need to worry that there has been some change in my tumour.  I think that until you have had cancer, you have no concept of how much having a ‘ticking time bomb’ inside of you can play on your mind.

Even though I have very little memory of the years between 2000 and 2010, I somehow still have the symptoms clearly imprinted in my brain of when my tumour grew. My visual fields would become crossed, I would fall over for absolutely no reason at all, my headaches would intensify and my balance would be significantly affected. When I have had recurrences of any of these symptoms over the years it has freaked me out. Without even being remotely aware of my thought processes, my mind would automatically jump to “perhaps the tumour has grown again?”

 It has been nothing short of unbelievable to think that I no longer have a brain tumour! I have actually had more years of my life with one than I had without one. I was 17 when I was diagnosed and on the 3^rd of October it will be 19 years since my diagnosis. I am so incredibly blessed.

During my three nights awake after finding out my incredible news my thoughts went over the lives of friends who haven’t been so fortunate. I found myself wanting to weep for their loss, and that they never had the chance to feel as free as I now felt. I also wanted to weep for their loved ones who had to farewell their child, parent, or partner to cancer.

I don’t think that I will ever lose the extreme sense of gratitude to the Lord that I feel. I found myself wondering why God has given me this second chance. I also found myself asking, no, pursuing God as to what His purpose was for leaving me here. I didn’t get any clear answers to those questions but I had a strong sense that I wanted to continue seeking Him, and to continue living my life as fully as I am physically able to. I want to continue trying to do what my circumstances have led me to believe I can’t do. I dearly want to spend the rest of my life pushing the boundaries of what is achievable in living with pain throughout my body.

I don’t ever want to take life for granted and I hope I never will.

THE EMOTIONAL ROLLER-COASTER RIDE TO MY RECORDING 'JUST THIS ONCE'

In my previous post on this blog I shared with you the amazing journey to my recording ‘Just This Once’. However, what I didn’t share was the extreme difficulty I had in that journey. It was not an easy path for me emotionally and there were a lot of hurdles to overcome.

When I first found out that my relatives had generously donated money to pay for me to have a day in the recording studio I was stunned and greatly excited. However, those feelings were quickly replaced with extreme anxiety. As I thought about the fact that they had all put so much money into this I felt a huge amount of pressure that my singing on the album had to be good or I would let them all down. Fortunately my sister spoke with me within 24 hours of these thoughts beginning and reassured me that that was the last thing that my relatives would want. She told me that everyone wanted me to thoroughly enjoy the experience.

In my year of jamming with my pianist, long before the recording prospect even came on the scene, I had battled greatly with insecurity about my voice. Andrew (my pianist) had given me a microphone so that I could record myself and hear “how amazing I was sounding”. However when I recorded myself and listened to it I thought I sounded not just bad, but absolutely horrendous! This was when I realised that, even though I had thought I had long overcome it, my inner perfectionist was still alive and well.

It got to the point where it ended up not being constructive in any way and so I stopped recording myself. Because of my perception of how I sounded I became extremely anxious about people, other than my parents and immediate family, hearing me sing.

Even though our house is quite large, if I had planned to spend time working on my singing, I wouldn’t do so if there were other people at our place. Even if it was at the far end of the house, I didn’t want to even risk being heard.

During the summer, in the months leading up to the recording, when it was very hot I would shut all my windows so that none of our neighbours could hear me. Luckily I have an air conditioning unit in my bedroom so I was able to keep cool at the same time.

I am incredibly grateful that I had a wonderful and very open friendship with Andrew and I was able to tell him how I was feeling. I told him how when he first came to jam with me in 2011 what had touched me the most was his being very positive about my voice at the end of the jam session on his way to the car. It had stunned me that he said that and it gave me enough confidence to keep at my singing. After telling him how I had felt he said to me that he had studied jazz for 5 years and knew a good voice when he heard one. This helped build up my confidence that this was worth pursuing.

However, the insecurity that I felt about my voice was something that travelled with me right through to the recording of our album. What was amazing was that every time I got on with singing I was always freed from it. It was always just a matter of getting over the hurdle of my perception of my voice and letting loose. Once I got going I would become so focused on the music, the lyrics, the timing etc., that all that would take over my mind. Also the sheer joy of each occasion would consume me.

On the day of our recording I was completely free from any insecurity. Even though it was the first time I had sung with anyone else other than Andrew, I felt so incredibly free. I was so excited, which was utterly liberating. I had also been very anxious as to how I would physically cope with the recording, as I find standing long very painful, but I was able to cope with it on the day of the recording.

When I eventually received the finished tracks of our album from the producer, I was so incredibly excited. It was finished and I was so thrilled with how it all sounded, even how I sounded. However, after listening to the album for a couple of weeks it got to the point where I couldn’t listen to it on my own any more as intense critical analysis of my voice would take over. The perfectionist within me was once again running riot. By the time my album release party (about a month later) came around I was once again really anxious about people hearing me sing.

What if they heard the imperfections that I could hear? What if I actually sounded terrible and everyone had just been nice in saying that I had a great voice? What if I was going to publicly humiliate myself? I had absolutely loved my recording experience, but this was different, there was going to be an audience there.

One thing that I found recurring reassurance in during the journey to recording ‘Just This Once’ and our album release party was the fact that Andrew would give me such encouragement every time we jammed. I knew he was well trained in jazz and had worked amongst professional jazz singers and so I had confidence in what he was saying. It was also greatly reassuring to know that Andrew would be there at the recording, and later at our two album release parties. Just knowing that someone who knew my voice and knew me was going to be by my side was so incredibly reassuring. I joked with him that he was my security blanket.

Now that Andrew is living and studying in Sydney, I am entering the next phase in my journey with singing. This is working with other professional musicians. Even though a part of me does still feel some mild apprehension about this, the whole journey through to my recording and the sheer joy of the release parties that followed has instilled in me a confidence that I hope will carry me through.

If you are interested in listening to ‘Just This Once’ you can do so with the two tracks that are on YouTube from the album.  They are ‘Paper Moon’ – http://www.youtube.com/watch?v=NoUQS5_ARDw and ‘The Boy From Ipanema’ - http://www.youtube.com/watch?v=trQU9aaA7oE.

The full album is also available in full on iTunes.

THE AMAZING JOURNEY TO MY RECORDING 'JUST THIS ONCE'

Long before I was diagnosed with a brain tumour, during my High School years, I trained in classical singing. I never let on to any of my friends at University that I had sung classically as it wasn’t particularly ‘cool’, but I sang at weddings during the university holidays.

In 1998 I moved into jazz singing and found in it such an incredibly thrilling thing with such a huge amount of freedom. However, in 2000 I unfortunately had to have 6 lots of neurosurgery in 8 days. These surgeries, along with my further surgeries in 2004 and 2006, affected my memory hugely and I lost my entire repertoire, and actually all memory of how to sing at all.

In 2010 two of my doctors recognised my passion for music and song, and encouraged me to try again.  The problem was that I had no memory of how to even get a note out of my mouth to sing.

I researched online how to sing jazz, and for 2 years I taught myself, but longed for a pianist to jam with. Eventually in 2012 I was able to contact Andrew Faleatua, in his final year of a Master’s degree in jazz piano, and we managed to have regular jam sessions which I found exhilarating.  When he mentioned that he was soon leaving to do his PhD in Sydney, I began to yearn to be able to record with him before he left so I would have a solid memory of our jamming together.  However, I had no income, and this was a huge hurdle. 

My cousin found out about this and without my knowledge arranged for my extended family to generously donate towards a day in a recording studio!

I regained contact with an old family friend, Roger Manins, now a renowned jazz saxophonist. Roger suggested I have some lessons with his wife, Carolina Moon, and he connected me with two of his past students, Cameron McArthur (bass) and Declan Smith (drums).

On the 18^th of March 2013 we all met for the first time, and “Just this Once” was recorded.

Normally, due to the chronic pain muscle condition I live with, I can only stand still for about a minute before severe pain kicks into my back and my legs. Because of my awareness of this I was quite anxious as to how I would cope being on my feet all day on the day of my recording.

To my absolute astonishment I managed to be on my feet at the microphone for most of the time between 11am until 7.30pm!

By the second song my leg pain was already kicking in and so we took a break in the extremely comfortable control room

. This would prove to be the first of many breaks taken during the recording but I made it through.

The incredibly talented saxophonist Roger Manins, who features on my album, was touring Australia in the 10 days prior to the recording and was due to fly in and be at the studio at around 3pm. Due to delays in his flight he didn’t arrive until after 5pm. When he had finished backing the tracks he’d missed, he recorded ‘Body and Soul’ with the other musicians. What was extraordinary was that it was originally planned for only Roger to do a solo. However, Roger felt that it would be better if they all did one together. It was completely off the top of their heads and was outstanding.

Roger then suggested that we add another track to the album to make it a full album, as opposed to just being an E.P. He suggested that we do ‘Summertime’ and once again, off the tops of their heads, the musicians got up and played this piece.

I had sung this song on the first album I recorded back in 1998 but was feeling so utterly exhausted and in so much pain by then that I feared I would forget them. Because of this I got the studio to get the lyrics off the internet and blow them up into a huge size for me to have in front of me.

As I left the studio I was absolutely elated and realised that the day of our recording was undoubtedly the best day of my life!

I named the album ‘Just This Once’ after the coming together of all the musicians for the first and probably only time for the recording. It was quite extraordinary seeing it grow from my being encouraged to sing but having  no memory of how to, to relearning jazz, to finding a pianist, to then having a recording booked with no musicians other than me and Andrew. Our then progressing to having one of the best bass players in Auckland come on board along with a superb drummer was amazing. Then having Roger offering to join us for the recording was the icing on the cake!

'Just This Once' symbolised our all meeting together on the day and jamming together in one 8 hour jam session to record the album. The day of the recording was the first time I had met the bass player, the first time I had ever played with Roger Manins, & the first time we had ever all played together as a band. So the recording was just this once!   

Singing is one of the most incredible “presents” that God has restored to me in the last 13 years.  When I sing I am almost unaware of my physical pain and feel elated – my pain just goes to the back of my brain.  And the beauty of jazz is that if my memory does slip up on things there’s the freedom to skat sing! It brings me such incredible satisfaction, and joy.

The full album of ‘Just This Once’ is available on itunes and two of my favourite tracks from it are up on YouTube for you to listen to:

 ‘Boy From Ipanema’ - http://www.youtube.com/watch?v=trQU9aaA7oE

 ‘Paper Moon’ - http://www.youtube.com/watch?v=NoUQS5_ARDw

I can only hope that in listening to them that you, the reader, get a small sense of the incredible joy that this whole journey has brought me.

MY MIND MIST

In the view fom Urqurhart’s Bay, Whangarei Heads, there is a magnificent mountain, Mount Manaia. This mountain somehow represents such strength to me and I really enjoy looking out to it each day. One of the things that I love about this mountain is the way that it looks spectacular and very different from different angles.

However, this morning when I woke up there was a change in our view. Mount Manaia was completely shrouded in mist and only its silhouette could be seen. 

I thought that this was a very good illustration of how depression affects me nowadays. It is often when my physical pain and headaches are very bad that the mist falls. Even though I am usually bold and strong in spirit, seemingly out of nowhere a mist covers my brain. During these misted times I feel weak, anxious and hopeless. However, at these times I have to cling to the fact that just as the mist over Mount Mania clears within hours, so too will the ‘mist’ over my brain. That I just need to rest in the knowledge that it will move on and the strength and boldness will return.

I find it very hard when under the ‘mist’ to remember that I even possess strength, that my life is full of hope, and that there are things to look forward to. Depression is really hard like that in that when it comes, it completely shrouds my brain and momentarily blocks all memories of happier, stronger times.

There is something else about the mist that falls during these times - it seems to block me from seeing, feeling or hearing from God. God feels distant and when I look up or around me all I see is the thick mist. It is during these times that I struggle to see the light that inspires me, hear the voice that encourages and lifts me, nor feel the hope that leads me on.

One thing that has really helped my during my low times over the years has been in turning to the Bible. The words of King David have helped me so much. He knew and understood abandonment, fear, despair and sorrow and expressed it clearly in the Psalms.

“O Lord, the God who saves me,

day and night I cry out before you.

May my prayer come before you;

turn your ear to my cry.

For my soul is full of trouble

and my life draws near to the grave.

I am counted among those who go down to the pit;

I am like a man without strength.

I am set apart with the dead,

like the slain who lie in the grave,

whom you remember no more,

who are cut off from your care.

You have put me in the lowest pit,

in the darkest depths.”

Psalm 88:1-6

Something about the Psalms that has also really helped me is the way that when David turns to God he always finds strength and senses joy again.

It has also been a real inspiration for me to see that relatively quickly, sometimes within the space of a Psalm, David is able to see the light and feel joy again.

“I will sing of the Lord’s great love forever;

With my mouth I will make your faithfulness known

through all generations.

I will declare that your love stands firm forever,

That you have established your faithfulness

in heaven itself.”

                    Psalm 89:1-4

I have also found real peace and inner rest in turbulent times through David’s words in Psalm 62.

“My soul finds rest in God alone;

My salvation comes from him.

He alone is my rock and salvation;

He is my fortress, I will never be shaken.”

                    Psalm 62:1-2

I love the visual imagery that this Psalm brings to my mind. When I have gone through periods of feeling overwhelmed by anxiety I have visualised a solid rock fortress around my mind that no thoughts can penetrate. In visualising this I have been able to halt my racing, anxious thoughts, seeing them unable to get past this wall.  When this image has sunk in, my soul and mind have found rest.

Through the Psalms I believe that David has shown that it is actually alright to feel fearful and anxious one day, and then to feel at peace, happy and joyful the next.  I believe that this isn’t a sign of inadequacy or weakness, but is in fact part of the human condition. What I believe is the key is that what enables this change to happen is in David’s turning to God.

I have personally found that during my ‘misted’ periods, even though I can’t see or feel God, when I turn to Him and express the pain I am feeling, I know He hears me and will answer in His good time.

Psalm 13

^"How long, Lord? Will you forget me forever?

    How long will you hide your face from me?

 How long must I wrestle with my thoughts

   and day after day have sorrow in my heart?

   How long will my enemy triumph over me?

 Look on me and answer, Lord my God.

    Give light to my eyes, or I will sleep in death,

 and my enemy will say, “I have overcome him,”

    and my foes will rejoice when I fall.

 But I trust in your unfailing love;

    my heart rejoices in your salvation.

 I will sing the Lord’s praise,

    for he has been good to me."

THE JOY OF TAKING PART MORE IN LIFE

In the past 13 years I have obviously lived. However for many of the past 13 years I was only really able to exist and I certainly wasn’t able to play an active role in anyway in anybody’s life. Since having six lots of neurosurgery in 8 days in 2000, my life changed forever.

In 2001 my oldest darling nephew was born, then in 2003 my 2^nd  gorgeous one. In 2004 my sweet little niece came into the world and in 2006 my dear youngest nephew graced us with his presence. Even though I have been their Aunty for many years now, there were many of those years where I was unable to play an active part in their lives.

There were many years when I had to spend the time of their visits in bed. There were also many years where I was only up and about for very short components of their time visiting here.  There were many times too, when they would come up and be at my bedside when I was in hospital. During those years I was too unwell to play any sort of role in their lives other than to just be an Aunty. However, fortunately they don’t remember these years.     

Hunter won’t remember visiting me when I had a pressure monitor put in my brain in 2002, Angus won’t remember his coming along to my ‘Celebration of Life’ party marking the 10 year anniversary of my diagnosis, Stella doesn’t remember my holding her when I was so drugged up on steroids and morphine that I could barely string a sentence together, and Will certainly won’t remember me from the years after he was born where I was recovering  from the major neurosurgery  which I had earlier in in 2006, the year he was born. The saddest reality for me is that I also have no memories of them from those years.

It hasn’t really been until these past two years that I have been able to actively play a role in the lives of these gorgeous four children. In fact, the reality is that prior to these past  two or so years I wasn’t up to actively playing a role in anybody’s life.  My day to day life merely existed of existing – my mind dulled with morphine.

It has been to my utter delight in these past recent months to have been able to take part and actively play with my nephews and niece. Even though my hand- eye coordination has never been grand (more than a slight understatement!) it has brought me such incredible joy to be able to be ‘double-bounced’ by Stella and Will and fall over on the trampoline in fits of laughter. To be able to occasionally (when my hand pain allows me to hold a sword) beat Hunter and Angus in sword fights and to be able to lose miserably playing outdoor badminton and tennis with them.

Another area of life that I haven’t been active in much at all in these past 13 years is in cooking. Cooking, food, and flavours are one of greatest my passions in life. It is very much in my genes to be a ‘foodie’ (aka someone ever-so-slightly obsessed with food!) with my Nana being a great cook, along with my mother.

In the year prior to all the surgery in 2000 I was very into throwing dinner parties. It brought me such joy to cook the meal and then share it with 10 or so dinner guests, and then shape the leftovers into something delicious to share at a potluck lunch for up to 30 people on the Sunday.

However, after my chronic pain muscle disorder coming onto the scene, as a result of the 6 lots surgery, I struggled greatly to stand at a bench due to the pain in my back. I was also very weak over many years, and having radiotherapy and two more lots of neurosurgery, I found it really difficult finding the strength to stand at a bench and prepare food. I was able to do a small amount of cooking but it was only been making things that were quick and easy to make, and with my mother’s assistance.

 

In 2008 my pain condition advanced to my hands which made fine finger movements, such as holding cutlery, or a sharp knife, extremely difficult.

I am incredibly blessed in that my mother is an amazing cook and over the years she has cooked me stunning meals every night. Last year however, I reached a point where I decided I wanted to play a more active role in the kitchen and wanted to try to find ways to do difficult things in spite of my hand and back pain.

I spent a weekend staying with my sister and discussed all of this with her. She suggested I google ‘cooking with arthritis’ and to my amazement there was a book published in 2009 under that exact title. This book had techniques with pictures to show easier ways of cutting, stirring and doing difficult things in the kitchen.

Since that weekend I also researched and found many gadgets that are designed for people who have similar pain issues. These gadgets do very simple tasks that I have found near impossible since my hand pain issues came on. Tasks such as opening jars, opening cans, cutting, and especially dicing and slicing vegetables and stirring things. Many of these tools have been designed purely for convenience for able-bodied people but for people with hand pain issues - they are a life saver. These kitchen tools have helped enable me to get back into playing an active role in the kitchen and I love every minute of it!

Unlike many people who see cooking as a labour, to me it is such an incredibly satisfying experience and such a joy to be able to do it again. When I am preparing food and cooking I make sure I have my favourite music playing, sing a little and thoroughly embrace the whole experience.

Things such as playing with my niece and nephews and cooking could seem like such simple joys that I would never have realised were privileges if it hadn’t been for the weakness and pain I have experienced in the past 13 years.

I am so very fortunate to have been able to play a more active role in other’s lives in these past few years. It is also such a blessing that I have had a brain that can think and remember, with a few necessary aids. As I’ve come off the heavy pain drugs the cloud that hung over my brain has lifted and it has given me immense satisfaction to be able to support other people at times.

All of the things mentioned in this blog are just the norm for most people but because I had so many years where I was forced by my circumstances to be completely inactive I now find so much joy and delight in being able to once again play an active role in my life and the lives of others.