This is the personal account of an Australian soldier who deployed to Timor Leste with the 1st Battalion, Royal Australian Regiment (1 RAR) in 2000-2001. During this tour 1 RAR soldiers were used to trial the experimental quinoline anti-malarial drug tafenoquine, manufactured by GlaxoSmithKline, in one of a series of tafenoquine studies undertaken by the Army Malaria Institute. The Department of Defence claims that “there is no evidence that tafenoquine causes serious neuropsychiatric effects, either acute or chronic”, only by ignoring the fully documented medical histories of this veteran and many others like him.
Among the 492 tafenoquine trial subjects, not one single severe neuropsychiatric adverse event was attributed to their use of this drug in the published trial report. Yet there are scores who were subsequently diagnosed with serious, chronic psychiatric disorders including depression, anxiety, PTSD, bipolar and other personality disorders. Many were medically discharged from the Army and remain chronically ill, while the Department of Defence refuses to accept any responsibility or to undertake follow-up studies.
This account is typical among the survivors of the trial.
“I was put in the locked psychiatric ward at Townsville under close surveillance and remember being isolated with some other very mentally sick people. What I went through there in hospital can’t really be explained to someone who hasn’t crossed the line to insanity.”
I was 19 years old when I was deployed on Operation Tanager to East Timor. To be a soldier was all I ever wanted to be and I joined because I wanted to make a difference and help people. I was a soldier of 2 platoon Alpha Company 1 RAR, and I was prescribed Tafenoquine as part of the anti malaria drug trial in 2000.
A lot of things happened over there on tour that had a great impact on my life. It’s been 15 years since I returned home from that deployment and the following is a summary of what has happened after my battalion returned from war-like service on Anzac Day 2001.
Like most of us, I had some trouble adjusting to society when we came back to Australia. The first thing out of the ordinary for me was that I just felt like being alone. That wasn’t normal behavior for me and I turned down invitations from friends to just stay inside on my own for days. I felt a bit shut off and I became more withdrawn and in particular from strangers and civilians. I found when my mind was occupied with work though, I seemed to be doing alright and I didn’t really think it was a problem at the time.
Later that year in 2001 was where things started to go very wrong for me. My mind started to deteriorate over a period of 2 months which lead me for the first time down the path of mania. Initially I was in good health and felt great. I had a happy and positive outlook and a huge thirst for life. I felt really strong, confident, and powerful. I started noticing I seemed to have a lot more energy than ever before, and my thoughts began to slowly race. Things that seemed difficult before were now quite simple to me. My mind was very sharp and fast and was getting faster each day. So much so that it began working overtime. In a space of 2 weeks I rarely slept, I remember walking the line between dreaming and being awake and thinking that I was fine, when in reality I had lost 20kg from over-exercising, looked exhausted and was talking so fast and rapidly shifting from one subject to the next that no one could understand me. I was becoming irritable, quick to anger and quicker to another emotion in an instant. Any fear or inhibitions holding me back were gone, and I would wake to a new day excited like it was an epic adventure. I started to believe I had a heightened sense of state as ordinary things or circumstances started to communicate with me on a second level to what I would normally understand. I found intricate meaning in anything that I was immersed in which would be entirely delusional to anyone but myself. I was completely irrational and psychotic, and it wasn’t until I didn’t show up for parade one morning that I completely lost it. I have trouble remembering, but I’m told that I was found in my room which was in a state of chaos, and I remember my boss bringing me some food and taking me to hospital.
I was put in the locked psychiatric ward at Townsville under close surveillance and remember being isolated with some other very mentally sick people. What I went through there in hospital can’t really be explained to someone who hasn’t crossed the line to insanity. To give you an indication of my thought process though, I believed I was at the centre of some extraordinary story where I’d been taken to a facility not of this Earth, and that the people I met were reincarnated versions of others I once knew.
To say the least, for me to come back to reality was a long, slow and difficult process. I had no idea what was happening to me, and was under very heavy drug sedation. I eventually came to grips with the fact that I was told I had a major psychotic episode and needed time in hospital to recover which played out to three months.
I was put on leave and sent home to be treated as my family tried to piece together what was happening. My memory of this time is hazy as I was heavily sedated and physically unable to get out of bed at times from the medication. After 4 or 5 visits to a Psychiatrist I was diagnosed with Bipolar Disorder. I didn’t know what that was and to this day I think doctors have a hard time understanding it themselves but the diagnosis lead me to understand that my future in the services was over. I lived and breathed the Army so this was very hard to take. The day I was told that I would be medically discharged was probably the most I’ve ever felt ashamed and lost.
A couple of amazing Vietnam Vets tried to help me when I was first discharged. I was still in a daze from the medication the doctors were trying to treat me with and frankly in a bit of shock from what I had been through. An advocate put together a case for me on my behalf. I kept quite a comprehensive written journal of my accounts in Timor but any evidence I had was not enough to support my claim for Bipolar Disorder.
Timor was new and I needed to show evidence that I had been through a stressor significant enough with the diagnosis of Bipolar Disorder being within 6 months of that stressor to warrant a claim.
When presenting my case coincidentally on Remembrance Day the Vets on the board asked whether I had been in any contacts or fired my weapon throughout the tour. When I answered no, I knew my claim would be denied and it was.
Since my discharge I’ve tried to live my life as best as I could, but I soon discovered new problems. I had my first taste of major anxiety and depression in early 2004. I slowly started withdrawing into myself and lost more and more of my personality over a few weeks to a point where my mind felt numb, and everything I did seemed like I was just going through the motions of basic communication. I felt on edge and my cognitive skills were almost freezing up as I couldn’t function or make a decision. This was new and I tried to escape from it by drinking heavily one night. I remember waking up the next morning frozen with what I now know is anxiety. I knew I needed to call for help but couldn’t work out what to say or how to do it and felt just about paralyzed in my mind. I had to once again recover and quit my job and move home for my family to take care of me.
What followed was a long drawn out depression. It would hold on to me and little I can do to this day can help it. When depression comes it comes, and I just have to hope for the best, but when it does come, suicidal thoughts come with it leading to suicidal ideation. In the trough of depression it’s close to the only thought that you have. You’re mind convinces you it’s the only choice that’s left to solve what’s happening. For me, it’s not a feeling of sadness, it’s a feeling of nothing at all. It’s just about the opposite of mania, you’re mind runs slowly, and simple tasks seem overwhelming. You just want to be alone, you don’t want to do anything, and you just want to die. I’ve had more depressive episodes than I can say, and have been close to being hospitalised for it on a number of occasions. They can last for months on end and the anti-depressant medication treatment I’ve had for it doesn’t seem to have any effect.
I was 23 by this stage after going through these two major episodes and started to have little hope for my future. I took a very basic job at a factory where I worked along side older people that had trouble mentally but were able to put in a days manual labour. It was hard for me because despite my psychological problems I was reasonably bright and young.
I had a lot of nightmares, and continue to have one vivid reoccurring one where I’m in a contact scenario back in Timor with my section. Each dream is in a new location but it’s always the same, I can’t seem to find my weapon while my mates and I comes under fire. I wake up in terror and a cold sweat. I find occasionally in social situations I get a similar cold sweat and I panic. I avoid anything army, in particular Anzac Day or anything that reminds me about my service which I find hard as some of my closest friends still serve and I have a respect for it. I’ve found in the past when I bring things up, or relive what I went through on deployment it often leads to me becoming unwell.
The fear of that first psychotic episode is what keeps me in check. I’ve had several further manic episodes and they seem to come when I’m under stress. The most recent one I had was quite severe and I was starting to lose my grip on reality again with delusions and seeing signs in ordinary things. I’d take wild risks in decisions and not consider the consequences. Some of the thoughts I’ve had in these times I won’t mention but could have lead to some dangerous scenarios. I would show signs of violence, bursts of anger, just breaking down emotionally, and generally not be in control of myself. You try to use your brain to figure out how to solve the situation, but the problem is your brain is the part that’s broken. Each time I have an episode, my mind seems to be in a worse state than before. I get headaches, my short term memory deteriorates, and my focus or concentration to stay on a simple task at times seems more confused. People will talk to me and quite often I’m far away. Im still a bit unsure of the cause of what has happened to me. All I know is this – I went to Timor fit and healthy, and didn’t return that way and have never been the same since.
Despite what has happened to me, somewhere deep down is that 19 year old soldier that doesn’t give in. I fight to hold on to who I am, and not let things get to me. Some days I lose though, weather the storm and lock myself away from the world for a day or two, but I carry on.
I’ve managed to persevere and live a pretty good life of sorts really. There were long periods where I was healthy and it was here I managed to do really well. With the money I made in Timor, and from the factory I had a deposit to buy a house. I left the factory, studied, travelled, opened a business, got married and started a family. Throughout all this I’ve cycled through mental health problems and states of mania, depression and anxiety. Sometimes I have outbursts of these problems where they’re short lived or blend together.
In 2009 my girlfriend who is now my wife experienced what happens to me when I have a major depressive episode. She didn’t know what to do at first as I became more distant and withdrawn and slowly couldn’t communicate what was happening to me. It got pretty severe quite quickly and I ended up at hospital once again. This time I managed to get some help. I met with some new doctors who were a bit more in touch with young veterans. Since then I’ve been treated by a psychiatrist for Bipolar Disorder. After all this time with him I’ve rarely spoken about my deployment but talking with him has helped me stay on track with my condition. For a long time I was taking Epilem to control my moods, and sleeping medication when necessary to reduce the risk when I go high in mania but I’ve been drug free now for over 18 months and reasonably healthy. I know what the future holds for me though, and what has happened to me is permanent. I think what hurts me the most is putting my family through the process.
I owe my life to my family and friends. Without them or an understanding support network, I wouldn’t be here. Strangely, I’ve also found having looked after a dog has helped. It gets me out of the house and my dog’s outlook on life is pretty inspiring. Physical fitness or activities have also really helped when I’ve been depressed. Forcing myself to go out and be with friends. A job that keeps my mind occupied and gives me a purpose. The belief that no matter how deep or dark a depression is, that it will one day eventually pass. A good night sleep and not too much stress to set things off. I’ve found that having a sense of humor has helped me through the years. A Vietnam Vet once said to me that when you’re a digger, if you’re platoon went through a bad situation you would have a laugh along the way, and that’s how you get over things, deal and survive. I think also that none of us fought in Timor on our own.
Going on tour to help the East Timorese was one of the defining moments of my life. I haven’t been in contact with anyone I served with for nearly 15 years now and being isolated hasn’t really helped me. For a long time I literally thought I was a minority, mentally weak and just unfortunate for what happened to me. A friend recently sent me a link to the online group for us Timor vets and it’s answered a lot of questions. I hope to answer more and personally with what I went through hope to find peace in knowing that I wasn’t at fault for what I’ve suffered. I also hope to live the rest of my life as mentally healthy as I can, and that one day I can pay back my friends, family and the great people who have helped me.
*The manufacturer of tafenoquine, GlaxoSmithKline, has requested those affected by the toxicity of the drug to contact them on 1800 033 109.*