In the story that follows I write about some of the major life changes I have experienced.

I write about them not for admiration nor for sympathy but in the hope that somewhere amongst it all, there is something that you will find helpful in your journey.

There are many others who have had things far worse to deal with and made their lives better because of the adversity the have had to face, I take my hat off to them and look on them as an inspiration.
Thank you for taking the time to read my story and I hope there is something in it that is of help to you.

I once thought I had plans for life but it seemed life had plans for me.

I was born with a gene that meant sooner or later a form of arthritis called Ankylosing Spondylitis, would develop in my body.
Ankylosing Spondylitis affects the heart, eyes, rib cage and bone joints that eventually fuse together making it quite difficult and in some cases virtually impossible to do the most mediocre of things like brushing your hair or putting on your clothes or washing dishes, etc….
I can remember when I was a teenager, having a doctor who had examined me, telling me that by the time I was thirty I would need to have both hips replaced.
Hmmppff, thirty was a long way away and I was feeling fine, I was a teenager for gosh sakes, I was invincible and felt as though I would live forever.

So I lived my life as I saw fit, I didn’t take the amount of care I probably should have with my body. At times I lived rough, did a lot of hard labour, took risks that could have had catastrophic consequences if they had turned out differently, etc.

When I was in my early twenties I began to feel a more intense pain in my hips than the occasional twinges I had been experiencing up until then but that was O.K. a bit of codeine or some anti-inflammatory fixed that up (temporarily).

In my mid twenties, I became a professional puppeteer and began working for a renowned puppet company. We toured through a large section of Australia with plans to take the shows overseas. It was probably one of the happiest times of my life.
My arthritis had gone into remission, I felt the strongest and healthiest in my life and I had stopped taking any type of drug which included alcohol and tobacco, (the two worst ones as far as I’m concerned).

I really enjoyed the traveling, even though at times it could be come a drag because of the repetition. I loved being in a new town each day and meeting lots of interesting people.
Mostly though I enjoyed the performances and bringing a smile to the faces of children whose life otherwise was pretty dull out there in the sticks.

It was a revelation for me to see the difference in attitude and character between the people who live out in the country and those who live in the cities, especially the big ones.
In retrospect I preferred the more simple way those in the country looked at life and how they looked out for each other.

I was also fortunate to see some small country towns still living in what seemed another era, as nothing much happened so nothing much changed in those towns.
I can only imagine that the unique character of those towns is sadly, long gone.
Perhaps it reminded me of some of my childhood when I came to Australia and lived for a time in a small country town during the mid seventies, that I felt this way.

While on a ten day break before we started a two week season in Melbourne, I was staying at my brothers cabin up in the beautiful hills of Maleny with my girlfriend at the time.
There was an old garden shed at the back of the cabin that was mostly held together with rivets. I was determined to try and stop the roof from being torn off in the wind, so in my attitude of invincibility I climbed up onto the rickety roof and started placing some concrete blocks on the loose roof panels.

As I was doing this a thought came into my mind - “what would happen if the roof gave way”.
I’m not sure if it was this thought or just the mischievousness of serendipity that made the roof suddenly cave in that day but I fell through the roof and landed on the only piece of uncluttered ground there was in the shed.
The strange thing was that it happened so fast and yet at the same time it was also in slow motion.
I landed on my back, missing concrete blocks, garden tools, building tools, window frames with the glass still intact and a sturdy, wooden work bench.
T o say I was lucky was an understatement, I could have landed on any of these things and broken my neck or my back.

As it was I only suffered some bad bruising but this was enough to put me out of action for at least a week but I was due to travel down to Melbourne in two days time.
I knew that because of the type of work I would be doing, if I went back to work so quickly I could do permanent damage to my back and even though I loved my job I wasn’t willing to risk it.
So I called the company and explained the situation asking for a week to let my back recover properly before I went back on the road.

Unfortunately my boss thought I was only trying to shack up with my girlfriend for a bit longer and gave me an ultimatum - “Be ready to travel to Melbourne in two days time or don’t come back to work.” I felt devastated at the their lack of understanding or compassion especially since I’d slugged my guts out for them for the past eighteen months.
In my naivety I didn’t realize they were seeing my request with a sinister view.
So I lost my job, some friends and a career but at least I was happily in love, or so I thought.

It’s strange that when you meet someone, you think that what you feel for that person and what they feel for you will last forever. Unfortunately in most cases, it is not so.
What started out as something rather nice turned into a nightmare of grand proportions as life hit me in the face with the fish of sobriety.
Without going into detail out of respect for privacy, I learnt some huge, very valuable lessons. The largest was to not lie to either myself or another when it comes to matters of love.

At the time I truly believed I loved this woman and even though I wasn’t too sure of exactly how she felt towards me, I was feeling great and the future seemed rosy.
As time went on however and I saw just how damaged she was, my feelings changed and where once I was in the relationship for what I thought was love, it became more one of proving I wouldn’t desert her like so many others had.
Eventually I realized that I had entered the relationship for the worst reason possible.
I was lonely and thought a relationship was the answer to the emptiness I felt in my life.
The song “Tears In Sanctuary” was written at that time, reflecting the turmoil I was feeling within me.

Over the next few years the arthritis became a lot worse, eventually putting me in hospital where I was given Prednisone for the first time. I was amazed at the affect this drug had on the arthritis, how quickly it worked and how well I felt. I no longer had to walk with the help of a walking stick and could do things normally again, be normal again.
This wasn’t to last however, over time the arthritis took over my body once more and I ended up in hospital again because the pain had debilitated me to such an extent that I could no longer look after myself.
When I came back out I was again on my feet but had to use the walking stick permanently.

It is hard to describe to someone who hasn’t had the experience of debilitating pain, just how awful it is and how hard it is to cope with.
It felt as though every time I moved my legs there was combination of glass and fire grinding away and consuming my hip joints.
I couldn’t sleep properly, couldn’t walk properly and found it harder and harder to keep my head above water.
I would often sink into despair and depression, then pick myself up and swim once more to the surface only to sink again.

One of the few things that was of any help to my emotional and mental state was music.
I love music and loved playing my guitars.
I would spend hours and hours playing the guitar and writing songs that no one would ever probably hear.
My guitar was my best friend and music was my saving grace.
Even though sometimes I feel bitter about having that taken away from me because of the arthritis in my wrist and hand, I am still grateful to have been able to have had the joy I once felt from being able to play music and write songs for the time I did.
One thing my condition has shown me, is how much most of us take for granted the things we are able to do with these amazing bodies we live in.
So if you can play a musical instrument, I can only encourage you to play every day and take pleasure in the fact that you are able to create something of beauty with the element of sound.

Eventually the fractured relationship ended, the walking sticks turned into crutches and I spent time on my own focusing on playing music and writing songs. Through a mutual friend I met Herrin Larkan who opened up for me so many exciting possibilities about making music that until then had been denied to me.
Herrin is a very talented musician and musical engineer and with his guidance and know how we began the long journey of making the “Dream Beautiful” album.
He has become one the few solid friends I can count on one hand.

During this time I met my now ex-wife, got married and had two beautiful children.
I also faced the fact that if I was ever going to have a chance at living a normal life, I would have to have my hips replaced.
By this time I was getting very little sleep because of the pain and was using a wheelchair to get around.
So I went into hospital and had both hips replaced at the same time with artificial ones.
If I had known just how painful and difficult it was I would have probably chickened out but sometimes there is a useful place for ignorance.

I spent a month and a half lying on my back with intermittent periods of physiotherapy and radiation treatment to stop the bones from growing back and fusing.
The hardest thing of all though was being away from my children and wife, I missed them more than I could have ever imagined.
They came to visit of course but it was so difficult to have to say goodbye when they left.
I would have given anything to be able to go with them.

After hospital I spent another month or so in a rehab hospital doing physiotherapy and trying to learn how to walk again with the aid of a contraption called a rollater.
If it weren’t for the arthritis now fusing my knees I would most probably have succeeded and led a normal life.
After I had made sufficient progress, I was allowed to go home.
It was the best news I had heard for a long time.

Unfortunately I didn’t realize the affect the many different types of drugs I had been given would have on my state of mind. My initial enthusiasm at being home began to wane and I began to fall into a lethargy of depression.
Six months later the doctors wanted to have a go at replacing my knees and although I had my reservations, I gave into the pressure from family and doctors and agreed to go through the experience all over again.
In the back of my mind I knew I had been very lucky with my hips, I had not had any infections which are quite common, my body had accepted the hips and everything had healed nicely.
I wondered if I would be so lucky the second time around.

As it turned out my reservations and doubts were justified.
I awoke from the knee operations to find I couldn’t move my right arm which was numb and virtually impossible to move on my own.
I couldn’t hold anything with my right hand, it just wouldn’t work no matter how much I willed it to.
Apparently during the hours long operation, the anesthetist had not moved my arm from its original position and the result was that the blood supply had been cut off resulting in nerve damage. I was fortunate however to regain most of the movement over time but to this day even though I can use my hand, there is still a slight, uncomfortable numbness that I guess will be with me until the day I die.
The worst thing though was waking up from the operation to find I couldn’t move my legs because they had been placed in traction.

A metal rod had been pushed through both of my legs just above the ankles and attached to these were bags of sand that were used to weigh my legs down and stretch them out flat in an attempt to straighten them.
I lasted eleven days before I begged the doctors to take them off.
I could no longer handle the situation psychologically, I felt as though I was sinking into a deep pit of darkness that I would never be able to emerge from and I feared I would never see my children, wife, family or friends again.
Looking back now I can see I was a bit of a woose, there are people who have had to endure far worse than I had, for far longer and they never gave in.

Anyway I was happy to be free of the weights and to be able to get out of bed with help and go to the toilet properly instead of using a pan or as in some cases, not being able to hold on until the nurses were able to arrive to help me and just going in the bed.
Not the most pleasant of experiences and a real blow to my ego but once more I was able to lie in another position other than on my back and I could hardly wait to get to the rehab hospital and start exercising so I could walk again like a normal person.
Little did I know what was in store for me.

After a few hours of taking the pins out of my ankles, it became obvious that something wasn’t right.
My right leg was numb and my right foot began to hurt more and more.
It felt as though one minute there was crushed glass inside of it and the next moment it felt as though it was on fire or that the inside of my foot was filled with barbed wire.
It was a very, very painful and unpleasant experience and I was given increasingly larger doses of morphine which I had already be on for a few years anyway to control the pain of the arthritis.

After a month of this, my foot finally settled down and the pain decreased letting me begin my physiotherapy.
I was still in a wheelchair but was hoping to be able to walk even though the best prognosis I had been given was that I would have to use crutches again for the rest of my life.
Things started out o.k. with the physio but it soon became apparent that my right ankle would not support my weight even with the help of a rollater and I had to resign myself to being in a wheelchair.
Whatever damage the pins or the operation had done to my nerves was not going to be irreversible.
Perhaps it was just as well because if I had ever fallen over there was a high chance my bones would break because they had become so soft. During this time my left eye began to hurt and I was given some eye drops for it but the cause had been misdiagnosed. The drops did nothing to make it better and over the next two years I lost my sight in this eye. It was only much later that it was diagnosed as iritis caused by the Ankylosing Spondylitis.

After returning home I vowed I would never return to another hospital as long as I lived. I had had my full of hospital life but I will say that I have developed a life long admiration for the nurses and the role they play in helping patients get through the trauma of an operation or illness.
They work so hard and long and are not paid for the value they give, a situation I hope will be put right one day soon.

So I was back at home and very happy to be there with my children and wife.
Unfortunately things were not as good I had hoped they would be.
My body became sorer and sorer and I lost my appetite and seemed to be constantly tired, I couldn’t even get out of the bed into my wheelchair without someone’s help.
I thought it was just a bad flare up of the arthritis and was due to see my rheumatologist
very soon. Before I saw him I had a blood test which revealed my white blood cell count had gone crazy.

I was sent for a bone marrow test which was performed without any anesthetic, the only thing they could give me was laughing gas which made me feel nauseous. If I thought I had experienced pain before, I now experienced the worst I had ever felt. Despite the numbing affect of the laughing gas, I could feel the needle literally being bashed into the bone of my pelvis. I am not ashamed to say I screamed and cried and wished for it all to be over.

The next day I was told by my doctor that I had Leukemia and had only two weeks to live.
It was a shock not just for me but for my wife, my family and friends.
After all I had so far been through, I was now to face another trial, the most dangerous of my life.

My wife and I traveled down to a large hospital in Brisbane where I thought I would receive treatment for a couple of weeks and be able to go home again.
Those couple of weeks stretched into four months during which I received three lots of chemotherapy.
After the first lot of chemo I had severe diarrhea for almost a month and couldn’t eat anything so I was hooked up to an intravenous feed of nutrients. The lining of my bowel was stripped away by the chemotherapy and the bile from my liver began leaking into my stomach which was regularly pumped out of me by a tube that was forced down my throat. The only fluid I was allowed was an ice cube every few hours.
I can tell you those little ice cubes were like heaven to me.

My body had stopped making a particular chemical ( the name of which I can’t remember), and my feet and testicles swelled up to the size of oranges.
I also had a severe reaction to an antibiotic I had been given and my life force took a serious drop, so serious that the doctors didn’t think I’d make it through the next day or two.
They told my family to come in and I guess say goodbye.
All I could think of was that I was not going to die yet, I had too much to do and I would not leave my children fatherless at such a young age.
Perhaps it was this that helped me to pull through or the prayers of my family and friends, or both, I’m not sure.

I would spend each day staring at the affirmations of wellness my wife had made and put up around the walls of my hospital room.
My children were not allowed to come in and see me because of the high risk of infection so I had to endure being away from them once more, perhaps never seeing them ever again.
Each time I was given the chemotherapy, there was no guarantee it would work, in fact there was a high chance it would kill me.
Chemotherapy totally wipes out your immune system so you have no protection at all but eventually with the help of other drugs, it is built back up and hopefully all is well again.
I was very lucky in that I had the most treatable form of Leukemia and I was still youngish, strong and healthy. I had a good diet and most importantly my attitude to it all was positive.
There were some very dark times when I doubted I would survive and all my beliefs about an afterlife flew out the window leaving me scared and empty. I tried talking to a priest about it but found his counsel of little help.
I had two more chemo sessions and had to face the possibility of dying with each one.
The second brought more nausea and diarrhea and the third brought nausea and an ulcer in my throat which resulted in a night where I felt I was choking and spent hours vomiting up blood into a metal bowl. It felt as though I was trapped in some sort of horror movie with all the blood that seemed to be surrounding me.
Thankfully I made it through with my sanity intact.
On the subject of blood, every morning around three o’clock, a nurse would wake me to take some blood for the daily blood test. I eventually started calling them “the vampires of the night” to which they’d have a good laugh.
I love the sense of humor nurses have in order to cope with the shocking and tragic events they deal with every day and night.

During my time there it was hoped that the arthritis might go into remission but it was not to be. There was the problem with me taking the Prednisone because it suppresses the immune system and they were trying to get my immune system back up.
So I was given a very minimal dose of Prednisone each day and had a little injection pump attached to my stomach that would inject morphine at certain intervals.
After a time that changed, they unhooked me from the machine and gave me morphine by injection. I will say I enjoyed the rush I felt as the morphine was injected into my line, it became something to look forward to in an otherwise boring day.
By that stage I could tolerate a reasonably high dose of the stuff so I never felt too out of it.
At one stage the doctors decided to try a different pain killer and hooked me up to Special K or Ketamine, a potent analgesic, hallucinogen and animal tranquilizer.
My experience on this stuff was horrific. I had the most awful nightmares and I wasn’t sure where reality stopped and began. The nightmares seemed to blur into the life I was familiar with and after two days I asked them to take me off it because of its disturbing affect on my mind.

Another thing I had to face during this time was that my father had been diagnosed with bone cancer and was put on medication to try to control the pain.
I can still remember talking to my sister on the phone and hearing her tell me that if I could, I should visit dad as soon I could because he may not live for much longer.
After the phone call tears of rage and helplessness burned down my face.
Life could be so unfair.
I managed to get out for a few hours and my wife picked me up and we went and visited my dad.
I was so shocked when I saw how thin and frail he was and I tried so hard to keep it together. The cancer had also entered his brain and was pushing on a part of it, preventing him from talking clearly or being able to remember what he was going to say.
As a kid you think your parents are going to live forever even though you know about death and all, so it comes as a shock when you know they are going to die and there is nothing you can do about it.
It seemed a cruel joke when I had survived something that was going to kill my dad.
It took away some of the joy of finally being released from hospital and to be going home.
I was only home for a week when I hurt my back from doing something too fast and ended laid up bed again. I was so sick of having to lie in a bed, I had truly had enough of it.
The worst thing was it prevented me from going to see my dad in hospital and say goodbye to him before he died, it also stopped me from going to his funeral.
It is not an exaggeration to say I was pissed off at life.

When I got out of hospital, my wife told me that she wanted to go away for a week.
She had had enough of looking after the kids and needed some time for herself.
So my mum came up to help me look after my kids while my wife went of for some rest and recreation, something I could have done with myself but I was just happy to be alive and at home again with my children.
Things were not going well between my wife and myself, there was an underlying tension and we always seemed to be arguing over the stupidest things.
We no longer said how much we loved each other, rarely touched each other and an undeniable separation of coldness had developed.
I was also struggling with trying to come to terms with any meaning to life or death and without knowing it was slipping into a dark depression.
Perhaps it was just the combination of these things or maybe it was all that we’d been through so far or that my wife wanted a future with someone who was able bodied or maybe it was some other event that finally broke our marriage.
Neither of us were happy but I never for one minute thought that my wife had stopped loving me. Perhaps if I had been more aware and less absorbed in my own stuff I would have seen that something was terribly wrong but as it was I just thought we were going through a difficult patch.
We had been through difficult patches before and survived and there was no reason why we wouldn’t survive this one but without love there is only emptiness and unhappiness and this was what my wife felt.

After six months of being back home, she told me she was leaving, she found a place and moved out with the kids, her dog and everything that she owned and had brought to the marriage.
If I thought I had felt devastated before, it was nothing to what was to come.
I felt as though someone had ripped out a very special and important part of me and all that was left was a deep, never ending hole that nothing would ever be able to fill.
That hole is still with me to this day but I have learnt how to live with it but it never seems to get better.
It took me a year and half to finally start to feel o.k. about what had happened and close my heart off to the feelings I still felt for her.
I came very close to developing a psychosis and started having counseling.
I also discovered that people who had claimed to be my friend, turned their backs on me choosing to be supportive of my wife exclusively.
It took me a while to accept the fact that I didn’t really know my wife as well as I had thought. It seemed as though all we had been through together had meant nothing to her.
At times I wondered if I must be one awful person to have made someone else feel that way.
After a time I began to understand that it takes two to destroy a relationship just as it takes two to make it and I must have a masochistic complex to believe that the fault was all mine.
I accept my part in the failing of our marriage but I don’t accept being responsible for all of it. I spent a lot of time pulling myself apart and coming to terms with my failings and realised that we all have our failings and if I can show compassion and understanding to myself, then I can do the same for someone else.
This doesn’t mean denying what I feel and sweeping it under the carpet for the sake of others, it means dealing with my own feelings in best and most appropriate way I know how.
You can’t change someone if they don’t want to change even if you think it’s for the best.
The mistakes people make in their lives are the lessons they learn from.
The most important thing to me now is the well being and happiness of my children.
Even though I still feel the hurt and some bitterness towards my now ex-wife, my children’s happiness is more important than how I feel towards her.
I now prefer to make the best of the situation and can honestly say that even though I came close to it a couple of times, I have never hated her for the things she has done.
Whether this is a sign of maturity or forgiveness or something else I can’t really say but by trying to understand the motives and reasons for the things she did, I’ve come to understand a lot about human nature, relationships and myself.
I feel as though through all my trials, I have become a better person and hopefully that will reflect in my children as they grow older and begin to understand the sometimes mysterious ways of the world.

Life had not finished teaching me some of its more bitter lessons however.
A year ago my brother had a sore back and after going to a doctor and having x-rays, a tumor was discovered to be the cause of the pain he was feeling.
I felt an icy dread once more rake its fingers through my turbulent life.
My brother received chemotherapy and things seemed to look hopeful but then more tumors were discovered and after a seven month battle my brother died.
My sister, her family and I were on the way to the hospital to see him when we got the call.
Again I missed out on saying goodbye to someone I love before they left this cruel yet beautiful world.
If you were to ask me what is the most important lesson I have learnt through all of this I would have to say this.
Life is not fair or unfair, it is not benevolent or cruel, it just is.
That’s all - it just is

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