KEEP MOVING FORWARDS!

While holidaying at the beach, on a mildly warm day, I went swimming. In spite of my being an absolute water-baby and being prepared to swim at any temperature, when I entered the water I was struck with how freezing it was. Even though I was initially paralyzed by the cold, thoughts didn’t even enter my mind to leave the water. I knew that it would warm up and become pleasant if I just kept moving and got into the deep.

I saw a parallel in this of when we try new things that aren’t known, comfortable territory. In the past two years I have been challenged to try many ‘new’ things. I had completely forgotten how I had done these things due to my memory loss after each lot of neurosurgery and I was not at all sure I could still do them.

After one of my specialists, who is a musician himself, heard my clip on YouTube he strongly encouraged me to start singing again. But the thing was that I couldn’t remember how to sing, or even produce a note. Even though I had sung at weddings for my holiday job during my university years, that was 10 years ago and a lot of memory loss had occurred in that time. I had absolutely no idea how to produce musical sound vocally. But this doctor encouraged me with such enthusiasm, that I started to consider trying again.

At first I was very tentative and quiet, only taking very small ‘steps’ in my singing. I was having to have two skin treatment baths a day and initially I very timidly sang out prayers for people while I was in the bath using an old Gregorian chant that I knew, as my musical backing. When I would hit a ‘bum note’ I would abruptly stop singing and it would take a few moments before I would feel the courage to try again. What I found encouraging was that the more I sang the fewer of those notes there were, and when they did occur I could just take a breath and restart.

Over the course of a couple of months my confidence grew and I started to want to sing more than just in the bath, and more than just Gregorian chants. I started to listen to jazz music again, after a 10 year break. As I started to try and sing jazz with very tentative little steps, those steps became confident, excited strides. I had completely forgotten the amount of joy it filled me with when I sang! With my singing, I went from cautiously paddling in the shallows to rolling in the deep.

What had initially been an absolute challenge started to feel natural. Now, 18 months into singing, part of me can’t understand why I hadn’t tried sooner as it brings me so much pleasure. I had assumed that because I hadn’t done it in such a long time, and couldn’t remember how to, that it was no longer within me. Most of all I had completely forgotten how much pleasure it brings me to sing.

However, if I had stopped moving forward with my singing and had remained ‘frozen’ when I hit those ‘bum notes’, and if I had let the weakness in my voice when I had first started deter me, I would never have moved into finding the fullness in my voice again.

This whole experience has made me wonder what else there is still lying latent in my brain that I could rediscover?

In all of our lives there are things we did and enjoyed when we were young and have since stopped doing. Our lives have changed. Careers, children, complex issues have entered the scene and we feel we are no longer who we were. However, what we don’t realize is that those abilities are still within us and can be brought back to the surface if we are willing to try. But we have to be prepared to enter the cold, unfamiliar water and push through those first freezing, paralyzing steps.

So much potential lies within us but we have to be willing to step out of our comfort zone, push past the initial freeze and just keep moving towards what may well end up bringing us incredible satisfaction and even delight.

MY PERSONAL PERSPECTIVE OF LIVING WITH AN INVISIBLE DISABILITY

I am at an extremely fortunate point in my journey where I have no visible evidence that I have a disability. There is a flipside to this, though.

After my 6 lots of neurosurgery in 8 days in 2000 I was left with several problems that nobody could see. I was left with many issues with my brain function, some mental health issues, and many physical problems – namely chronic pain throughout my body. But none of these could be seen and to this day none of my health problems and physical challenges are visible. This is an incredible blessing on the one hand, but causes me extreme frustration on the other.

From January 2005 I started using TENS (Transcutaneous Electrical Nerve Stimulation) machines to help reduce the amount of pain I was in. I began just using the electrodes on my back where the only thing that could be seen was a small (6cm x 9.5cm x 2.5cm) machine hanging around my neck. An extremely dear friend got the measurements of the machine and his grandmother hand-beaded an exquisite little bag to hang around my neck that concealed the machine. This reduced the amount of double takes from people and they didn’t really bother me.

In early 2008 when my pain condition progressed to my hands and forearms I started using electrodes on my arms. The electrical current going into my arms enabled me to feed myself, handwrite and drive more easily. Unfortunately it also meant that I had something obviously out of the ordinary that was often stared at. Having to use electrodes on my arms I needed to use a 2^nd TENS machine – so had another machine hanging around my neck.

My mother very kindly made me two black velvet bags to conceal the machines. But in the summer there was no way of concealing the 5x5cm electrodes, and wires coming out of them, on my arms. Herein began my getting not just double-takes, but absolute stares. My way of combating this was to wear sunglasses, even inside shops – they meant that I could just stride past people when they stared and they couldn’t catch my eye.

In 2009 my pain condition progressed to my legs and feet and I began also using the TENS machine on my legs around the knee area. This meant that in summer I was looking very ‘wired up’ and there was now clearly something abnormal in my appearance. Most people just stared, but other people felt compelled to comment on them and ask questions.

There were many humorous scenarios that friends and family members suggested for me to say, such as that I was being tracked by satellite, or that I was on home detention and that this was the latest way the police could keep track of me. However comments about my appearance were usually made when I was at my weakest and least felt like talking about it. People’s comments were also always in public places, such as in queues at the supermarket, when I didn’t want to go into my medical situation.

One Saturday I accidentally left my sunglasses in a changing room of a clothing store. I went to the supermarket after this shop and found that people weren’t just staring at my electrodes but would then catch my eye and stare at me. This happened time and time again in the 5 minutes I was in the shop - I found it so upsetting that I burst into tears when I got into the car. I bought new sunglasses the next day.

In August 2010 I had to stop using the TENS machines. Because of the severe itching reaction my body was having to the stimulation and the tape that held the electrodes in place. Even though this led to a significant increase in my pain levels, it also led to a huge amount of freedom. When Spring came, and shorter sleeved and legged clothing, I felt so incredibly free. Free from stares, free from unwanted questions, and free to have it appear as though I was normal. But what it didn’t free me from was the reality of the pain.

Not using the TENS meant that I no longer had anything that might indicate to people, even my close friends and extended family, that I was in a lot of pain. I had chosen a long time before then to not show in my expression that I was in pain. If I was to show it I would continually be around with a pained look on my face, and what would be the point in that? And who would want to spend the rest of their life looking miserable?

As I said earlier, there is a flipside to having an invisible disability. There is no doubt that it is an incredible blessing that with every appointment I have had with my specialists in the past 12 or so months they have all said “you are looking so good!”  There were many years where I was ‘inflated’ on steroids, and I couldn’t even concentrate my vision on the specialist let alone hold a conversation. But I have had to say, and at times persuade, many of them that in spite of my looking good, I am going through physical misery every day.

Unfortunately it’s not only people that don’t know me well that don’t seem to realize that there is so much more going on than what is visible. Some of my friends, who I don’t see in person on a regular basis, have also struggled to come to grips with it. People who don’t understand my everyday reality may not appreciate that I am not choosing to not help with meal preparation or offering to help cleaning up, but that I actually can’t stand still for more than about 30 seconds before intense back pain kicks in and it is painful to use my hands for anything.

On a different front, my short term memory problems and extreme levels of fatigue have been something that I’ve struggled with since all my surgery in 2000. These restrict my ability to retain things and concentrate. It can be hard to get people to understand the extent of these issues when I now look so ‘normal’.

It is also hard for people to understand when my morale is low that this is more than likely as a result of being in a lot of pain and being exhausted from it.

I have found it especially difficult when I have to deal with agencies in relation to my disability. I look like a fit, healthy person who should be out there working and earning a living. This perception is so very different to my reality though, and even with medical documentation stating that my pain is going to be here permanently, I have had to go to great lengths to persuade them that I even have pain.

Now I am not writing this blog trying to get sympathy, or even worse pity. I am rather trying to express my frustrations and my experiences.

A sad reality is that I am far from alone in my experiences. There are many people the world over who live with horrendous invisible disabilities. Cancer, pain, neurological complications, through to mental illnesses and various forms of fatigue disorders; these are problems that are faced by people throughout the world every day.

Just because they have no visible evidence, this does not alter the invisible suffering many people endure. Perhaps we should be more understanding and believing of people who talk about pain that we cannot see.

SEIZING SUNNY, PAIN-FREE DAYS

Living with a chronic pain muscle condition is similar to living with random weather patterns. The location and intensity of my pain varies from day to day. I do not know from one day to the next where, or how severe, the pain will be.

Because it isn’t sunny every day outside, when it is sunny I personally want to get out there, enjoy that day and make the most of the sunshine. It is the same with my pain.

When, for example, my hands are free from pain, I want to try and do as many things as I can with them that day; to write, to do some form of art work, or to cook. I do all this for enjoyment, but also so that when the pain returns and I struggle to do any of those things, I will be able to look back on my day of being pain-free in one area with no regret. 

After having 10 years of living with a brain that barely functioned I now also have a drive to use it. There are still many days when I struggle to use my brain to its greatest capacity because of headaches and pain, but I now love being able to think and process things. I lost a lot of my vocabulary after all my surgery in 2000 and had to re-learn it. Because of this I also really enjoy being able to describe things.

I think that wanting to seize the day is a driving force in my life. But what I find disappointing is when extreme fatigue hits me and I don’t have the strength to do much of what I would like to do with that day.

I do wonder if I would have this perspective if I was living without pain. Do ‘normal’ people have the same driving force to use their bodies to the best of their ability each day? To make the most of hands that don’t hurt, to write? To make the most of legs that don’t scream with pain with every step? Or are they not even aware that they are living a life of freedom without physical limitations?

I’m not sure that we are even conscious of the freedom in our lives until there has been something that threatens to take it away. As the band ‘Counting Crows’ put it, “You don’t know what you’ve got till it’s gone”.

We appreciate sunshine and warmth after a lot of rain and cold weather. We truly appreciate rain only if we have had a dry spell. I wonder if it isn’t the absence of things that make us really appreciative of them.

It never crossed my mind before 2008, when my pain progressed to my hands, how fortunate I was to be able to hold a pen, paintbrush, or cutlery to feed myself without pain. Neither did it cross my mind before 2009, when my pain condition progressed to my legs, what a marvel it was to be able to walk down stairs, or up a hill, without excruciating pain in each step.

I think that one of the most important things I have learnt through experiencing pain is that we need to do what we can do with ease, and make the most of that physical ability. To enjoy the ‘sunshine’ when it is around and bathe in its beauty.

This is something I aspire to do.

WHO ARE YOU? WHO AM I?

Who are you? “I’m a sports fan”; “I’m a doctor”; “I’m a mother”; “I’m a lawyer”; “I’m a teenager”; “I’m a kiwi”; “I’m a Christian”; “I’m an Asian”; “I’m a Maori”; “I’m a  Buddhist”.

Sometimes we identify ourselves through our interests, other times we identify ourselves according to our age, our ethnic background, through our children, or through our income. Other times we identify ourselves through our professions or our professions of faith. So who are you anyway?

Think about your own identity as you listen to your thoughts. Who are you?

We so easily get distracted as we travel the pathway to the identity we associate with ourselves that we may not even know what got us to this point? Have you ever really thought about who you are and what led you to getting to where you are today? Did you choose to become what you identify with or is it something that you were influenced into becoming?

We all have something that we identify with, be it our faith, our social status or race. But what is it that truly defines us?   

I feel as though I have had many identities as my life has changed dramatically through the years. In high school I was a Christian and I was a violinist. From 1996 – 1998 I was going to be a counselor and in 1998 I also ‘became’ a jazz singer. From 1999 until March 2000 I was going to be a fashion designer. But when life turned to custard for me in 2000 after 6 lots of neurosurgery in 8 days, and I had to move home for the long term, I no longer knew who I was.

I had 8 years that followed 2000 where I didn’t have the cognitive function, due to recovery from neurosurgery and a ‘fogged’ brain because of the amount of morphine I was taking, to think about my identity. I just ‘was’. However, during these years there was always one thing I identified with, and that was whose child I was.

In physical terms I am the daughter of my parents but that isn’t what I’m talking about. During these past 12 years I have always known that I am a beloved child of God. Even though there have been so many changes over these years in the way I look, in the way I can think, in what I can and can’t do, there has always been this constant to give me my sense of identity.

God’s love for me has always been there and I have always felt a strong sense of identity because of it. I haven’t been a regular attender of church over all of these past 12 years as for many years I couldn’t focus on anything let alone listen to a speaker. I also couldn’t sit through anything for any length of time because of my back pain. What has been a constant however, has been God’s love. Fortunately that love isn’t conditional on church attendance or anything else.

The fullness of that love is so far-reaching that it has reached into my weakness, and at times despair, over the years. Fortunately that love is also enough to give me a full identity.

I know that in God’s love I am whole. I know that God in His love has a great plan for my life. I know that God is going to work all that has happened to Me for a good purpose. I know that God in His love will give me the strength to work through whatever life throws at me. I know that in God’s love I am complete. And I know that in God’s love I am declared innocent. I know that I am myself in God’s love and that is enough.

To me the greatest thing of all about God’s love is that it is constant. What I do in my life, my appearance, what pain I feel, what people are in my life, what possessions I own, will continue to change. However, God’s love for me has never and will never change.

Basically, through God’s love I know who I am.

THE 'CURSE' OF WOMEN'S LIVES

There is a problem within the western world that seems to plague a majority of women. That problem is feelings of inadequacy, inferiority and low self esteem based on our appearance. Associated problems all played a huge role in my life from my early teens until around 2007.

Throughout my teenage years I saw myself as being too tall, too fat, too broad, too much of everything that I despised.

I had grown up with an elderly relative regularly putting me down because of my size (I had been ‘big’ from an early age and was 184cm tall by the age of 14) and I was plagued with negative self-talk, low self esteem and a feeling of physical inferiority to others.

In my teens I was continually counting calories, exercising out of fear of gaining weight, and desperately trying to be what I felt I wasn’t – physically attractive. But to me being physically attractive was very strongly linked with liking myself and I believed that only when I was physically attractive would I be able to do this. But what I felt was that I couldn’t possibly be attractive unless I looked like and basically was someone else.

Every morning I would go to the mirror and list to myself everything that I saw that I didn’t like and these imperfections were what I would dwell on all day, every day. This negative self-talk was all-possessing and all- consuming. Aside from my study and music, those thoughts, along with calorie counting, were really all I thought.

I knew the scriptures, such as in Psalm 139 verse 14, which says “I praise you because I am fearfully and wonderfully made; Your works are wonderful, I know that full well.” And verse 15 “my frame was not hidden from you when I was made in the secret place” and I felt great disappointment in God that He had seen my frame since before I was born and still allowed me to be born the build I am.

I also knew well the scripture (in 1 Samuel 6 verse 7) that says “The Lord does not look at look at the things man looks at. Man looks at the outward appearance but the Lord looks at the heart” and thought that was all well and good. But somehow it never comforted me and only accentuated to me that man does look at the outward appearance and I interpreted that as meaning that that was what I needed to be concerned about.

The real problem with all of this was that I based my feelings of self worth, and my view of how I felt everyone else saw me, on the wrong thing. I based it on my physical appearance, which is essentially just the ‘shell’ of who I am.

I bought into the lie that what I looked like was who I actually was. That how other people viewed my appearance was what mattered most. That what other people thought of me was the most important thing in my life. But as I have said, it was a lie.

From personal experience I know that your external body can change and warp out of all recognition without the inner beauty of a person being affected. I now believe with all my being that the most important thing that a person should be concerned with is the condition of their heart.

It is not only God that sees the heart when He looks at us. Your inner beauty is something that can not only be seen but can also be felt by others. I believe that in the presence of a truly beautiful person you are not even completely aware of their physical appearance, you can feel their beauty without seeing it. That is what I believe true beauty is.

TRUE BEAUTY

In late 2005 I got to know a woman who I can honestly say was the most beautiful woman I have ever known. She was a Great Aunt living in Taranaki and I had only met her a few times in my childhood because of the distance between us (5 hours drive away).

In 2005 Aunty Dorothy rang to speak to my mother but because Mum was out we started talking, and this was the beginning of one of my most treasured friendships. Loving to talk and laugh was something we both had in common and our phone calls became frequent and the highlight of my week.

Aunty Dorothy was an absolute darling and a hard case of a woman, who had had a very hard life. In her final years she blossomed into the most beautiful flower and I was so privileged to know her during this time.

Aunty Dot’s beauty was different to what the world defines as beauty though. She was in her late 70s and it was her joy, laughter and how she saw the world that made her so beautiful.

Our phone calls were extremely honest and open and usually started with us telling each other how our days went. I was in a very difficult part of my journey, When I had ‘met’ Dot I was recovering from my surgery in late 2004 and was gaining a huge amount of weight on steroids. Dot would always relate to what I was saying and she would share what she had been through in her life. We both learnt a lot from each other.

Whenever I went down to see Dot she would be so over the moon to see me and she shared in my excitement as I began to lose my steroid weight. She would squeal with delight when I walked into a room, she was just gorgeous!

The thread that stitched our conversations together was laughter. Things were really hard for me at that time but we would be laughing for most of our conversations.

I had great admiration for Dot. She had overcome a lot in her life and it inspired me the way she took delight in everything.

We shared our faith with each other and she began to tell me how she had once believed. Our faith began to grow as we journeyed together and it became a beautiful thing that we shared. It was really exciting for both of us to share what we believed and how we saw God working in our lives.

Aunty Dot didn’t rely on others to bring her joy and laughter - she created it! As she aged, Dot loved to wear her make up, along with going to the hair salon to get her hair set each week. One instance that clearly showed her zany, naughty sense of humour was at one of those/these salon visits. She would always go with a friend and on this occasion, while the hair stylists were out of the room, she said to her friend that she was sure she’d seen her on the front of the paper. She was referring to the photo of the topless women on motorbikes in the ‘Boobs on Bikes’ parade! She and her friend were in fits of laughter for the rest of their time there and the hair stylists had no idea what it was that had left them so inebriated on laughter that they couldn’t talk. As Dot and her friend were leaving the salon she shared with the workers what they had been laughing about. Dot and her friend then left the salon leaving behind a salon full of laughter. Dot’s ability to induce laughing ‘attacks’ was a true gift.

Dorothy’s beauty emanated from her – it was there for all to see. But at the same time, her beauty wasn’t one that you just saw, you felt it. It was her inner beauty that was so compelling. In spite of difficulties during her life Dot had chosen joy and laughter to be her companion in the years that I knew her.  What a way to live!

Dot found joy, humour and lightness in the years I knew her, which were the last few years of her life. She showed me what beauty really was and inspired me to live similarly.

The legacy of beauty that Dot left behind was one that came from choosing forgiveness instead of bitterness. One of choosing to find joy instead of dwelling on her past pain. One of not being afraid to share her story and what she had learnt through her life. And one of not having any hesitation in letting her joy and beauty show for all the world to see. This is the kind of beauty that I aspire to.

WORTHY OF LIFE

 Last week I heard about an old friend, Kent, dying of brain cancer. I was flooded with so many feelings that I felt totally overwhelmed. Even though I haven’t had contact with him in over 10 years, somehow it just felt so raw.

Kent and another friend Clayton were the only two people that I ‘talked to’ (in the form of letters) about my diagnosis when I was still in hospital – though even with them I tried to trivialize it all. Kent had flown up from Wellington to be my partner at my 7^th form ball and through letter-writing we maintained contact for several years after.

To hear on facebook about and then see, through Kent’s profile photos on Facebook, photos  of him with a big shaved patch of shortened hair,  then no hair, and then with a woolen skull cap on and holding his newborn baby, led me to tears. As I looked at the photo there was something else I realized and that was that the backdrop was brain scans. Hearing and seeing all of this just swamped me with emotion and left me sobbing and I found myself crying out to God “WHY DIDN’T YOU TAKE ME?”

What cuts me up the most when other people, who have young families, lose their battle with cancer,  is that they are families with children who need that parent to look up to, need that partner to support and love them. I on the other hand feel that no one needs me for anything, nobody needs me as their role model. I just personally feel so bad when such a person dies.

After talking all of this through with one of my oldest friends she questioned why I felt as though I was less worthy of life. She said that though I am single and don’t have children, that my life was still worth something to other people. This comment really got me thinking about what it means to have lived a full life.

Is a full life having climbed the corporate ladder to the top? Is it having got married and had children? Is it having travelled the world and experienced all that it has to offer? Or is it perhaps having the letters ‘PhD’ after your name? If that is what a full life is, then I haven’t lived.

Because of spending most of the past decade with brain-injury from the 8 lots of neurosurgery I’ve had in that time, and being on high doses of opiates to cope with the pain, there have been many years that I have merely existed. Does that mean, that my life hasn’t had any worth?

In the early years after I moved back home in 2000 I decided to start writing people ‘encouragement cards’. I actually can’t remember what initially inspired me to do so but it has been something that I continue to do, in spite of major hand pain issues. I decided a long time ago that even if I couldn’t achieve anything in wordly terms, and even though I didn’t own anything much, there were still things of significance that I could do. I could still love. I could still encourage others. I could still build others up. I could still reach out to, and pray for people who were struggling with life. I could still be there for people.

For me, loving others is what I feel is part of my purpose in life. Loving and encouraging people; helping them to see their inner beauty in themselves and loving themselves; Loving my niece and nephews and encouraging them to see the beauty that life has to offer and helping them to see that God created them as they are and loves what he created. Loving others and seeing them flourish just fills me with such incredible joy. What greater purpose in life could there be?

Life is short – love (others) hard (out).