Music was my life. Since I was 10 years old and started learning to play guitar that is all I ever wanted to do in life.
I hardly made it through high school and scraped through by the skin of my teeth. I did only one tertiary subject in year 12, which was History, and almost bombed that getting 53% in my final exams.
None of that mattered though, as I just wanted to get out of school and never study again, as I hated school with a passion. I was never going to study further or go to College/University.
I did not have to, as my plan was clear. Simply play guitar, make millions of dollars, travel the world in a famous rock band and pick up hundreds of beautiful women. Sounds like a pretty bullet proof plan, why could possibly go wrong?
I turned 19 and was flat broke, going nowhere and had no band. I still loved to play guitar and got reasonably good but did nothing with it. Most of my family where successful working in some form of medicine, either natural medicine or mainstream. Grandparents on my mother’s side were doctors, mum became an Osteopath, and 3 out of 4 of her brothers were in medicine, two of them were G.P’s and one became an Antitheist.
I have a cousin who is a Naturopath, and she is married to a Chiropractor. And so it goes on… I did not care; I was the musical black sheep of the family and was certainly not going into any form of medicine.
So at 19 I was told to ‘grow up’ and get a proper education so I could support myself. So I did the unthinkable, I became a tradesman. I completed a 4 year apprentiship as an Automotive Refinisher (spray-painted).
I loved working on cars so this suited me, but spending the rest of my life breathing paint dust and fumes and spraying toxic chemicals was not going to be an ideal career.
I realized doing this with my life was not ideal, but it did teach me discipline and how to use many tools.
After finishing my training I took a year off to travel Australia with my best mate Dave. I bought an old Ford F100, fixed it up and off we went for a grand adventure. I was 24 and Dave was 23 at the time.
We had plenty of ups and downs on this trip, met some incredible people and had some super traumatic experiences on this trip, involving a Canadian cousin who met us in Tasmania, fell down a cliff, smashed both Calcaneal bones (heel bones), Ambulances and rescue choppers and 6 weeks camping outside Hobart general hospital. But that is a story for another time…
Returning to Perth after misadventure I floated around for a year or so, and my sister and her boyfriend decided they wanted to start a family. This seemed a reasonable thing to do. Unless, of course, you suffer from a life threatening genetic disease which does not enable you to have your own kids without passing the condition on to your children…
My Mother, Brother (Ian) and sister (Alisa) all suffer from Marfan’s syndrome, as do I. Marfan’s is a genetic disease affecting connective tissue in the body, particularly Collagen, the bodies’ main type of connective tissue.
Collagen is like the mortar that holds the bricks of the house together. It is everywhere, and sufferers of Marfan’s cannot make it properly so it comes out much weaker than in other people.
Marfan’s syndrome means a collection of symptoms, not just one thing. You can have very weak eyes (like my brother and myself), abnormally long arms and legs, deformed limbs (especially the feet in our family). And so many more symptoms I cannot mention here.
Marfan’s has a fatal aspect, and that involves the heart. The main blood vessel coming out of the heart is called the Aorta, and this is surrounded by connective tissue, which in us is very weak.
The Aorta of a Marfan’s person gets wider as we get older, but the walls of the Aorta get thinner and thinner until eventually you have what is known as ‘Aortic dissection’. Basically your heart bursts and you die…
It often happens at 25 years or younger, my brother made it to 33 before he was misdiagnosed, suffered a catastrophic Aortic dissection, but somehow survived. He had severe brain damage and also had a stroke from this, was misdiagnosed AGAIN, had another dissection and another stroke, this time affecting his other side.
My brother Ian was a super strong and highly intelligent man, was a straight A student who got into law and finished his degree before his first dissection. He finished his final exams and suffered his dissection. He never got to attend his own graduation. He lived for another 3 years with severe disability, suffered horribly from medical negligence, but never once complained about anything.
He died in 2009 at the age of 36…
I love him and dearly miss him.
Prior to all this in 2005 my sister wanted to have healthy kids who did not suffer from this horrible condition, and part of that investigation meant all of her immediate family needed to give a DNA sample to locate the affected gene. If they can find the affected gene then they can test the eggs or sperm, as not all cells are affected by Marfan’s syndrome.
If they find the gene, then they can test and discard the affected cells and you just end up with normal healthy cells, which can then be used to produce a normal, unaffected child.
I gave a saliva sample to help my sister, and after a huge amount of money (about $200, 000 AUS) and many failed tests they finally found the affected gene.
Hooray! My sister could now have normal healthy kids using her own biology via a surrogate (pregnancy still puts too much pressure on her affected heart and carrying her own pregnancy would likely kill her).
Part of the medical testing that needed to be done was also that I needed to go in for an echocardiogram (x-ray of the heart) as a specialist in Melbourne suggested I should have this checked. I was 25 and had no symptoms in 2005 so I thought it was a waste of time and money.
I had some Irish friends staying with me that I had met on my round Australia trip a couple of years before. I only remember this because it was the day after St. Patrick ’s Day, I woke up very hung over and had to go for the echocardiogram…
The results came in a few days later, my G.P. called me who also happened to be my Uncle. ‘You had better come in, Ben’ he said.
Uh-Oh, that did not sound good. He never tells me to come in, and always just gives me the information over the phone. Why is he telling me to come in and see him in person?
He just gave it to me straight. ‘Your echo results are in, the normal diameter of the Ascending Aorta is 2.5cm, and yours has reached 6.9cm… so you need to go and see a surgeon immediately, do not wait, here is a referral’.
My world started spinning out of control. He is telling me I need open-heart surgery, but I feel fine and was only 26 with no symptoms. WTF is going on???
‘Let’s get one thing straight right now; I AM NOT having open heart surgery’. I said defiantly!
‘Fine, but go and see the surgeon and get an opinion’ my uncle said. So off I went to see a highly recommended surgeon at the Mount Hospital.
Arriving in the waiting room I felt nervous, angry and scared. Mum was with me and she looked very worried, but pretended everything was fine. The surgeon took us in to his consulting room and immediately rubbed me up the wrong way. I thought her was a pig of a man, despite his credentials. He was very cold and formal, telling me I had no choice but to get the operation immediately, then proceeded to show me blown up pictures of heart surgery gone wrong… He said there is ‘nothing you can do to prevent getting a bacterial infection after surgery, just don’t let it happen to you…’
As if that was somehow helpful… I remember leaving feeling even worse than when I arrived, and knew that he was not going to touch me. Mum paid the $400 bill and we drove home in silence. There was nothing more to say. Mum kept telling me it would be alright, but things were a long way from alright…
I needed a second opinion, so a week or so later I went to see the other surgeon who worked in the building. His name was David Andrews. He kept us waiting for more than 2 hours. A very distraught couple finally walked out of his consulting room. The husband was ghost white; the wife was in tears, they had a son with them who could not have been more than about 5 years old…
Jesus I thought, why is that kid having a consult with a thoracic surgeon? It suddenly dawned on me I was not the only one in Perth who was in some trouble…
David let us in and apologized for the long wait, explaining that sometimes he needed to take longer with some couples who were in some serious trouble. I understood.
David laid down the facts for me; he did not push anything like the other surgeon, simply stated the facts of my case, and told me the choice to have surgery or not, was entirely up to me. I wanted so badly for him to tell me there was another option or that it was just a simple mistake and not that serious, that I did not really have to have the surgery.
He did not. He explained clearly that I needed what was known as a Bentall procedure, which was replacement of the entire Ascending Aorta, and Aortic semi-lunar valve. This was not small keyhole surgery, it would likely be a 10 hour operation as they had to physically replace parts of my heart.
They would put me on a heart/lung machine, as the only way they could do it would be to use a machine to pump blood to my brain and legs to keep the tissue alive while replacing parts of my heart. My core body temperature would be dropped to about 30 degrees, so I would be clinically dead for however long it takes to complete the operation. They then had to restart my heart and bring me back to life. Not everyone is strong enough to survive this operation…
He made this very clear, that there were risks involved. David said if I did not have this surgery I would likely die in the next couple of week, or 3 months maximum. He based this on the fact that many people have died from my condition with a much smaller Aorta than mine was, and he had no idea how I was still alive with such an enlarged Aorta, plus I was into the music scene, and was heavily smoking, drinking ect…
I asked about what could go wrong post-surgery. He said that many people get through fine, some loose the use of an arm or leg, others have nerve pain or any other sensory issue, that is different for every person.
He concluded with the summary, do nothing and likely be dead in weeks or a few months, or risk surgery and possibly die, but also have the chance to get through it and live a normal life span. Hmmm decisions, decisions…
‘And oh yes, if you get though it you will need to be on blood-thinning medication for the rest of your life, and several other drugs to take the pressure off the rest of your vascular system’.
My world looked pretty bleak at this point. I told him I was not ready to make a decision. I told him I was worried that if I had surgery something might happen to one of my hands and I would not be able to play guitar any more. He said ‘that is a valid concern; I will do my best but cannot guarantee anything’.
I got up to leave his rooms, and he pushed some forms in front of me. ‘Sign this’ he said. I told him I was not ready to sign the papers authorising him to operate on me, I needed some time to think and decide.
‘No, you don’t understand’ he said to me. ‘This is not authorisation to operate, this says that you have clearly understood what I have told you and I am now resolved of any responsibility if anything happens to you over the next few days’… I looked him straight in the eye and said ‘You cannot be serious; surly it is not that bad, you don’t think I am going to last another few days until I decide?’.
David calmly looked me in the eye and quietly said ‘Ben, I am not sure if you are going to make it down the elevator to the carpark without having a serious cardiac event’.
Jesus, now I know that I am in serious trouble, and that I really have no choice. I really did not want to have surgery but what could I do? Don’t have surgery and likely be dead in a few months, or have surgery and maybe die much sooner, but with the chance to live a ‘normal lifespan’ whatever that means…
The deal was done, I got my affairs in order and went under the knife of 18th April 2005, a date that I will never forget. Waking up in intensive care was beyond horrible; the pain was beyond anything I could have imagined. Tic-tic-tic…
Hearing my heart tic for the first time was surreal. They told me I would hear it but you cannot imagine how strange it is to hear every beat of your heart. It was much louder than I imagined. I felt like I had been badly beaten up, I had wires and tubes coming out of my chest everywhere. It hurt to move, it hurt to breathe. A nurse come over and told me what a success my operation had been. I did not care at that point, it felt like I had been hit by a car and left for dead…
The nurse kept saying how everything had gone so well, and the surgeon was very happy with the results. I just felt sick and in pain, in a foul mood and not really happy to be alive. They finally took the breathing tube out of my mouth and I could breathe on my own, which was a major relief, because it also meant I could close my mouth and swallow.
The beaming nurse who told me everything was magnificent asked me to move my arms and legs. My panic started to increase because I knew something bad had happened, and everything was not ok. I could move my legs and arms, but not my left hand. It was a claw, not unlike somebody who had had a stroke, or suffered from cerebral palsy. I pointed this out to the nurse, who suddenly turned very pale. They missed it. I did not.
My anger began to explode, I could talk now and I began to swear and shout that everything was NOT ‘alright’ they had missed something. I am usually very clam and passive, but not this day. My heart broke as I knew what this meant, I was alive but I would never play guitar again. Why had I survived??? I was better off dead if the only thing I loved was now gone.
‘How are you feeling, Ben?’ That is in the top 2 dumbest all-time questions, right next to ‘Are You OK? ‘. ‘I am feeling like s*)#, you stupid bi+^@, so why don’t you go and f^!# yourself????? I carried on like this for another few minutes…
‘HEY!!!, YOU ARE NOT THE ONLY ONE SUFFERING IN HERE BEN!’, a doctor yelled at me, ‘So keep it down or we will remove you’. I am not sure if I was really going to be kicked out of intensive care, but who knows? The ‘everything’s is magnificent’ nurse said we need to have a few scans done, I still remember the look on her face, she was not telling me everything was ok now, she looked worried.
I was sent for a cervical and cranial MRI as they thought I had suffered brain damage during my 9 hour operation. The scans all came back clear, so I had no idea what had happened to my hand, neither did anyone else. I decided to remain very quiet over the next few days, my pain was out of control and no drugs seemed to help me. I was given a morphine drip which you can press twice and an hour to get pain relief.
It did nothing for me, as I pressed it twice within the first minute for no result. The ward nurse told me it is electronically controlled, only the doctor on call can increase the medication to patients, and every time a patient presses the button the computer records the information. I kept telling them I was in pain when they asked me, and could not sleep. Minutes dragged on like hours, and I had nothing to do except lie in bed in agony and think about how shit my life had become, how much pain I was in and how my left hand no longer functioned.
Finally I decided they were not listening to me, and were not going to increase my pain meds, I knew I had to sleep to heal, but the pain was just too much. Time to change strategy, and I decided to play a game. I was going to get my pain meds increased with their system. I found the morphine button, and pressed it as many times as I could. I lost count after 150 presses. The nurse finally came to check on me and look at the machine, I still remember her shocked gasp as she read the screen and ran off to get the doctor…
He came and announced that I may have been in need of a slight increase in my medication… Hallelujah. I was still in pain but now able to sleep slightly. On day 5 after my operation the doctors told me how well I was doing, and that I could be discharged as early as the next day as I had achieved a quicker recovery than was normal, and that they usually kept people in for 10-14 days post-surgery. Fine by me, I was dying to get out! Once you are stable there is really nothing else they can do for you, you just need about 2 years to recover.
I was longing to sit out in the sun, breathe clean air and be away from all the other sick people, hospitals are not a good place to be. Mum brought me food daily, as she did not want me eating the poison that passes for ‘food’ in hospital. The next day was day 6, and they told me I could possibly leave today, after the physio had been, and the doctor had been, and the pain specialist had been… but the problem was no one came, and I was sick to death of waiting so I decided to check myself out (probably not very smart!).
I left all my clothes, had no medication and just left. I found a cab outside and somehow got home, I had a friend from Ireland who was staying with me so I had some help upon arriving back home to Fremantle. I am not sure but probably still hold the record for the fastest checkout of Royal Perth Hospital after major heart surgery (6 days!).
Trying to play the guitar was soul destroying in the next few month, I had no coordination and really could not move my fingers at all. I was recovering generally very well from the operation, but was getting more and more depressed about my hand.
I decided to try and get a proper diagnosis. I needed to know what happened to my hand so I could try and fix it. I went back to see the surgeon several months later. He said he did not know, and was sorry I lost my hand and music but he had given me my life back. Since I had a hand problem, he referred me to a colleague of his who was a hand surgeon.
I went to see this guy with some trepidation. More surgery was the last thing I wanted, but had no other options. He heard my case, said obviously I had a problem but not an obvious one, as the scans had not shown anything. He said he would be happy to operate, but since surgery had caused the problem, it was unlikely surgery would fix it. I thanked him for his honesty, paid his very expensive bill and left. His parting advice to me was ‘You have an issue with feeling and sensation, so you likely have a nerve problem. Go see this guy in Subiaco, he is a top neurologist’.
I thanked him, took the referral and left, and booked the appointment in Subiaco. The neurologist started doing tests again; he said he needed a full cervical and cranial MRI AGAIN as it had now been some time since my operation. I paid and got it all done again, at great cost.
Surprise! Nothing showed again, so he did a shock test and a few other tests all which showed nothing. I had now spent thousands and had nothing to show for my time and effort. Despite my abnormal hand, I got the feeling that he was indicating the problem was all in my head as nothing was showing. He thought I was a hypochondriac as all the scans were clear. I was obviously upset and he said ‘heart surgery saved your life, so be grateful and get on with it’.
No further advice was given; he did not suggest referring me to anyone else. Nothing can be done, and that was the end of the story… No one was going to help me, and I was not going to learn to play guitar again, so just deal with that. Finished…
My depression was pretty bad, and a good mate who lived round the corner came round one day. He was a fellow guitar player, and of Chinese background. His name was Tim. Tim said me to, ‘You have tried everything else, why don’t you go and try some Acupuncture?’ I was not really in the mood to hear such rubbish, and immediately replied to him, ‘Hey Tim, why don’t you go fu^# yourself???’. He said ‘Cool man, whatever, just a suggestion’. And he left.
Acupuncture, are you fu6#*!@ kidding me? I thought to myself the next day. No one had suggested that as a treatment option, and I know nothing about it anyhow. Then a funny thing happened. My sister called me out of the blue (she never calls) and said ‘Hey bro! I just had a really cool idea! Why don’t you become an Acupuncturist? – that would be an amazing career for you!’
What the hell was going on here? What was with the Acupuncture thing? Tim had never met my sister, who lived in Melbourne and had started studying Naturopathy. I guess that is where it came from.
As luck would have it the Australian College of Natural Medicine was about to have an open day and an Acupuncturist was part as part of the line-up. My sister somehow convinced me it would not be a complete waste of time… I was sure it would be. I went anyhow to hear this guy speak; he talked of Fire and Earth, Wind, Metal, Water and Wood. He spoke of enhancing the body’s ability to heal itself; he spoke long and passionately for about one hour.
After the talk I was not really convinced, but I looked up his name and found his clinic number. I was desperate, but also knew it was going to be a waste of time to see him. Despite my better judgement, I went from an appointment.
Driving to his clinic I was thoroughly convinced I was wasting my time. He assessed my case and said ‘Ben, I am not sure if I can help you or not, obviously something has happened during your surgery, what I recommend is you commit to a course of 6 treatments, and we work out if it’s helping you or not’. To which I quickly replied No. ‘This is not going to work, so I will have one treatment only, if it helps then I will come back, if it does not help I am not coming back’
‘Fine’ he commented. He started to talk about Yin and Blood, about Qi and Yang; he looked at my tongue and felt my pulse. This is pretty weird I remember thinking…
I lay down on the bench, and he put some needles in my hands arms legs and feet, and left me. I was surprised at how little they hurt, most I did not even feel. He said ‘If you need me, just call out and I will hear you’ He put some nice music on and left the room. About 10 minutes later, the cd began to skip, which was fine at first, but then got really annoying after a few minutes. Finally I called out. No answer… I called again. No answer… I called louder, but no one came. Finally I started screaming for him as I was panicking a little but still no-one came…
Finally he came in and said ‘what’s wrong? Oh just the cd skipping, am sorry about that. I just ducked out to grab some lunch!’. Mmmmm I was not very happy. He took the needles out and saw me to the receptionist, who heard me calling out but did not bother to check on me for fear of disturbing the treatment, or so I was told. ‘See you next week!’ He said to me. ‘I don’t think so’ I replied. ‘No problem’ he politely smiled and I left.
I got into my car quite angry that I had wasted my time and money, and not had a very good experience and started driving home. I had my right hand on the wheel and my left/damaged hand just resting on the bottom on the steering wheel for support. I funny thing started to happen, I felt the fingers on my left hand tighten a little on the steering wheel. It was hard to tell, but it felt like maybe the sensation was a little more heightened than it had been 2 hours before. Something felt different, but I was not sure what it was. I got home and parked in the driveway, and sat in the car for maybe an hour just feeling the steering wheel with my left hand…
Something was different, WTF was going on here? I was utterly convinced this was not going to help me. Who was this person who had done something that no ‘specialist’ with an alphabet of letters after their names could not do?
Was my hand really different from one treatment? Maybe I just hoped and was imagining it all? No, that was not it. Something had changed that day; my hand was not the same. I could not explain it better than that. I went straight inside and called him up, ‘book me in for the next 5 weeks’ I commanded the receptionist who had not come to my aid… Maybe that was a good thing? Maybe that was the way it was meant to happen???
I went back the following week, and for another 4 weeks, and every time I left my hand got a little better, and a little better, until the time was up and my course of treatment was finished. He suggested I continue, but I had nothing left to pay him. My fingers were now more or less functional; I had literally gone from having a claw to being able to move all my fingers naturally. My issue was that the feeling was still not great, some nerve issues persisted. I explain it like trying to undo a very tight knot of rope when your hands are very cold, your brain works but your hand does not respond.
I thanked him sincerely for his help, and decided if I studied and learned this Acupuncture thing then I could work on my own hand and not have to pay anyone. So that is exactly what I did. I enrolled at the Australian College of Natural Medicine (now called Endeavour College of Natural Health) and studied for six years.
Acupuncture is a four year full time Bachelor of Health Science degree but I had to do six years, because of issues with the College which also meant I only did two years in Perth, and then moved to Melbourne for four years to complete my study. I also took on a three year Bachelor of Health Science in Nutrition at the same time, did both degrees together. I will not tell the reason why I had to do six years to get a four year degree, which is a story for another time. Regardless, after my six years I finished both degrees plus two separate diplomas at another college in Melbourne. At the peak of my study I was doing 10 subjects a semester and had about 16 hours of classes a day. I achieved this by having no friends and no life for many years…
When I got into my second year I realised that learning this medicine was not just about me on my journey to heal my hand, that I could also help other people when Western medicine could not. This was an important lesson for me. Another was the understanding that people need the right medicine at the right time. Western Medicine saved my life, but took away my music, which was the only thing I cared about at that time.
Chinese Medicine returned my hand, but could not have saved my life. This taught me a strong respect for both types of medicine, and a clear understanding that both have their place in the world.
In my final year of studying Acupuncture, I was lucky enough to go study in Nanning, the capital city of Guangxi province in China. I learned that Acupuncture in practised in hospitals there, and is seen as serious medicine, as is herbalism. Western and Traditional doctors have equal standing and often work side by side. This blew my mind!
I also took on a Master’s Degree in Chinese Herbalism at RMIT and returned again to Nanning to study herbs in my final year in 2015. I was honoured to be accepted again, and was asked to teach in the University as I was now a Doctor (of Acupuncture) and hence taken much more seriously. The integrative medicine practised in China is light years ahead of anything we have in western countries, I hope one day this changes.
I have ceased to be amazed at the breadth of what can be effectively treated with Acupuncture.
If you have read this far then thank you for taking the time to share my story. I was the ultimate Chinese Medicine disbeliever, and look how it affected my life.
I wonder if it can help you?