September 2021

Real people, real stories: the lived experience we would love to be without

Overdose is an opportunist, ready and waiting to take anybody at any time.

Statistics from Scotland show that, on average, from every seven people who experience unintentional overdose as a result of using drugs, one does not survive. Among the “lucky” six who do, the harm can be considerable, ranging from physical to psychological or a combination of both.

In the lead-up to International Overdose Awareness Day 2021, The Bulletin has collected these seven raw and candid stories.

The drugs involved are diverse, yet a common thread runs through all the stories: a call for greater understanding of overdose, and greater action to prevent it.

* * * * *

Sandra McGivern lost her son to overdose.

Sometimes life can go very wrong – so wrong that you can’t imagine how it happened.

From the minute he could walk, Angus was kicking a football. When he was in the US visiting his dad on holiday, he decided to try out at a gridiron college, won a place and went off to follow his dreams. His future looked bright.

After being injured, he was prescribed opioid pain meds so powerful that he could continue playing until in the end he could hardly walk.

He became addicted to these opioids – a secret addiction. After losing his scholarship and his place on the team and becoming depressed and humiliated, he finally told us about it and went into a rehab program.

His hopes of becoming a champion footballer went from being a dream come true to being our biggest nightmare.

Returning to Australia with a back injury, he didn’t want spinal fusion as he was in his 20s and really believed he’d be able to play again. He had physio and chiro, trained with a local team and went to doctors for help – and there he was again prescribed opioids. What followed were seven years of struggling with addiction, three visits to rehab and many visits to hospital for everything from overdose to blood poisoning, finally leading to him being prescribed a drug 100 times more potent than morphine: fentanyl.

It was fentanyl that killed him.

This is a drug that’s used for post-operative and palliative care, so why was a young man with sporting injuries given it over and over again?

Even after I told them he was a recovering addict he’d be given fentanyl injections and patches, and I’d take him home and think, “How am I going to manage this?”

It was like being knee-deep in mud, never knowing the best way forward, often finding I needed to backtrack and usually just moving sideways.

How do you tell if someone you care about is in danger of opioid addiction?

I noticed massive mood swings: one minute Angus would be confident, elated and happy and have all these plans, then he’d be moody and snappy, eating erratically, sleeping during the day and staying awake all night. He’d be uncontactable for days and his stories just didn’t add up: “My phone broke.” “I left my phone in a friend’s car.” “I need to borrow $100 because I broke a friend’s car window accidentally and he needs it for work.”

Mother’s intuition tells you when something’s just not right.

I heard a pain specialist say that over the past 15 years, the prescription and use of opioid medication has increased enormously. Patients want a quick fix and doctors want to fix their patients.

But the side-effects of this are dependence and slower recovery, and in many cases addiction and overdose. It can happen to anyone.

Have the conversation: talk to your doctor, talk to your loved one. Don’t keep it a secret.

As mothers we all want to make excuses for our kids, and there’s the stigma of having a child who’s an addict. People imagine they’re out in a laneway or in a house shooting up but this is something they do at home, while watching television. They don’t look drunk or stoned; they just fall asleep and don’t wake up.

I started My Name Is Mum after 10 years of living with and loving Angus in addiction – 10 years of searching for help, answers, support and miracles. The project is in honour of my son, who lost his battle in September 2017.

The addiction is not our child, and by learning to separate the addict from the child we love, we can stay strong enough to make a difference.

Little by little, Justine slid into opioid dependence after seeking relief from menstrual cramping. As a Gen X Australian who had been conditioned not to second-guess medical advice, Justine was reluctant to question her doctors about the long-term use of prescribed opioid-based medication – something she now urges other pain patients to do.

I started consulting doctors regularly as a teenager, suffering from typical feminine period pain.

What I didn’t know then was that by trying to relieve my symptoms I was setting in motion a path towards addiction.

In consulting more than 50 practitioners over three decades in a desperate bid to eradicate that pain, I became incapacitated by migraines and dependent on codeine-based painkillers.

My blind faith in medical opinion placed my health in serious jeopardy. As a society, we’re conditioned not to question those providing diagnoses and medications.

The promotion of drugs – like all effective advertising – is seductive. The message is “Take a pill and all your pain will go away”. However, this is fiction, not fact.

What was initially period pain turned into what is now known as over-medication headache: the result of consuming too many opioids.

There were long stretches of time when I was unable to work or even leave the house. At my worst I was an invalid living in constant pain. Life consisted of alternating between doctors’ appointments and hospital admissions. With diminishing funds, battered self-worth and increasing isolation, being diagnosed with depression was inevitable. This in turn demanded more medication.

My incapacitation wasn’t due to disease or choosing to take illicit substances – it was the result of being too trusting of advice from doctors.

All prescription drugs are accompanied by disclaimers, but doctors never warned me that my long-term reliance on opioid-based drugs for pain relief was damaging. I didn’t ever hide the fact I took large quantities of painkillers and I often asked if I was jeopardising my health, but my queries were answered vaguely. Yes, such drugs were dangerous in large doses, but I was led to believe my intake wasn’t dangerous and that I wasn’t an addict. I subsequently discovered both of these things were untrue.

Over time I consumed a daily cocktail of increasingly strong painkillers, ranging from Panadol to Nurofen Plus, Panadeine Forte, Endone and finally Oxycontin. By 2010 I couldn’t function as my migraine was permanent and excruciating; the opioid drugs didn’t provide any relief.

Drastic action was needed and, thankfully, my GP suggested I attend a pain management clinic. I underwent intensive treatment for opioid addiction in hospital but what worked for me was to stop taking the drugs and endure the horrific side-effects. It took a couple of years before the opioid-induced migraines subsided.

I then had to cease taking the enormous doses of antidepressants I’d been prescribed; this had to be done slowly to avoid extremely unpleasant side-effects such as dizziness and headaches. Therefore, another few years were dedicated to gradually eradicating the 450mg dose of Effexor I’d been taking every day.

It took until 2018 to complete my program, and throughout the process I had to be very clear with doctors that I was determined to be drug free. Many practitioners – even those at the pain management clinic – warned that coming off drugs was difficult and that staying on them was the easier alternative. However, I insisted withdrawal was my only viable option. Doctors are very quick to write a prescription but often reluctant to advise a patient to stop taking a drug.

Questioning the status quo is difficult.

To rationally evaluate medical advice in the consulting room is hard, as discomfort and emotion impede clear judgment. Pain makes you vulnerable. All you can concentrate on is finding a way to make it cease. I didn’t have the presence of mind to question whether or not the medical advice offered to me was actually safe or effective. I assumed it was, and by the time I realised it wasn’t, it was too late; I’d succumbed to the toxic cocktail of over-prescription that grips our society.

Regaining my health has taken years, extreme determination and all my strength.

I’m now in my 50s and grateful that migraines and painkillers no longer govern my life.

Since losing her daughter Alex to overdose, Jennie Ross-King has campaigned passionately against the stigma and taboo that prevents open discussion and education around drug use. Alex’s death was one of six examined by NSW Deputy Coroner Harriet Grahame in a landmark inquest in 2019 that found high-visibility policing at music festivals “increases rather than decreases” drug risks for young event attendees.

Alex was born on May 25, 1999 and went to the angels on January 12, 2019.

She had an uncomplicated life. At school she did very well at everything, and she was a talented artist. Alex worked a casual job from the age of 13 and, after leaving school, joined the family business. She had no immediate career plans but in the first instance was going to see the world and restore her beloved 1970 VW Beetle.

Alex – like many 19-year-olds – went out partying on weekends, slept in ’til midday, had an untidy room and, rest assured, could be a cheeky brat. She was your typical teenager: mischievous, outgoing, boundary-pushing, free-spirited, loving and caring. Alex brought a little humanity, fun, sunshine but most of all craziness back into my life, into everybody’s lives.

I’m still in a world of disbelief that this has happened. Because THIS doesn’t happen to us; THIS happens to some other family who we read about in the newspapers and see on the news. We’re a family like any other who’ve had good times and not-so-good times… but not THIS.

Our story is not one of addiction, a long struggle with drugs, a torn-apart family or a challenge with mental health. Our story is one of pushing boundaries, rites of passage and experimentation. Ours is a story just like any other family’s story.

Our children, our young people, are exposed to drugs – legal and illicit drugs – in their everyday lives. Some just say “no”, like I did, but many have pushed and will push boundaries, like many of my friends did. Many will experiment and nothing bad will happen.

That was Alex’s journey – until things went terribly wrong and nobody knew what was happening, not even Alex.

Alex died because she took an unusually high dose of MDMA before arriving at a music festival. She was afraid of being caught with it during a police drugs check – there’s literally more fear of being caught and having it on your record than of dying. It doesn’t make sense but that’s the reality.

Alex and her friends, despite having a lot of information on the effects of MDMA, didn’t know the real symptoms nor the harm reduction strategies they could use to potentially reduce the worsening symptoms of overdose.

Worse still, as a parent, I didn’t know – not until it was too late.

Illicit drugs, law reform, drug policy: I knew very little and, if I’m being honest, I didn’t take much notice. I now know better; I’ve been slapped in the face by my ignorance and I realise just how dangerous my indifference has been. It cost my daughter’s life.

Certain drugs are not illegal because they are dangerous; they are dangerous because they are illegal, as I’ve learnt over the past two and a half years.

Any drug use comes with risks; however, only a small number of people who use drugs will go on to become addicted or have a dependency and many fewer will die, simply because of some of the harm reduction strategies now in place.

“Your daughter has gone into cardiac arrest.”

I didn’t know it at that moment, but the feelings and emotions of confusion and helplessness, soon to be despair, would be the first of hundreds I’d go on to feel. Time no longer exists like it used to. I’ve learnt that this is grief, this is trauma.

I read once that everybody makes mistakes in life – this is how we learn – but it doesn’t mean we should have to pay for them with for the rest of our lives or, more importantly with our lives. Sometimes good people make bad choices. It doesn’t mean we’re bad people; it means we’re human.

Alex made a mistake – one that many have made and will continue to make in one form or another. I too made a mistake, and I too am not a bad person, nor am I a bad parent. Some of our most important lessons come from the bad decisions we make.

When we’re open to learning from others, we have the benefit of their experience. THIS is not an experience I care for anyone else to have.

Esha Leyden shares her lived experience with other people who use drugs in order to help them manage their own practices in her work at QuIHN. Esha recalls two specific incidents that really shook her.

I’ve experimented with almost all the party and street drugs.

One night I and two good mates were invited to a house party. I picked them up and one of my mates had some frank (GHB) on them, so before we walked into the party, we each had a dose. We didn’t have anything to measure it out with, so we decided to fill up a Mount Franklin water bottle lid.

We hadn’t been there even 10 minutes when the fantasy hit us like a tonne of bricks – it came on that quickly.

We decided to head to another mate’s place. I was driving, we had the music full-bore and we were all dancing in my car. At one stage I must have gone up a gutter or something, which woke me up and I started concentrating again. I remember driving into my mate’s street, parking the car and getting out screaming at her on her balcony.

Then I woke up with nurses around me asking all these questions, like “What did you take? Do you know where you are? What’s your name, date of birth?”

“Well, it smells like a hospital to me,” I replied. “Did you call my next of kin?”

The nurses told me, “It was very close. We thought a few times we’d have to call them, and you nearly ended up in intensive care too.”

As I was walking to the toilet, I saw my two friends in the beds next to me.

When they discharged me I had nothing with me. They’d ripped my dress off so the only thing I had on was a hospital gown. They gave me one call to my dad. It was 4am. He picked me up.

Another time, a friend brought over some GHB. I’d taken it quite a few times so I knew what I was taking, what to expect and how much to take – it wasn’t something I was trying for the first time. I was with people I trusted and had known for quite a few years. I had only 1.5ml and my girlfriend had 3ml. After only 5–10 minutes it hit me.

I was feeling hot so got into the shower to cool down, thinking it would lower my body temperature. In the shower I was weak and losing the feeling in my legs; it was becoming hard to keep standing. I finally walked to my bedroom, which was only a few steps away, and fell onto the bed.

I had no control of my body: I had no control of my hands, arms or legs and I couldn’t speak. I was seriously overheating. All I remember is wanting to get back into the shower but not being able to move. As much as I tried, the worse I got. Then the stomach pains started. They became so bad I was crying and screaming, and then dry-retching and wanting to throw up. At the same time, my body was still overheating.

Suddenly I started fitting and my heart was beating at a hundred miles an hour. I was trying to yell out to someone to call an ambulance, but no words were coming out.

In 30 years of using drugs this was the only time I really thought I was going to die or end up needing someone to look after me 24/7.

The advice I’d give from my experience? Make sure you dose accurately. Water bottle lids just don’t cut it finely enough.

Always dose yourself so you’re in control of what you’re taking. A typical dose varies between 0.5ml and 1.5ml, although everyone reacts differently. (At QuIHN we stock 1ml syringes.)

Prepare your own G. Premeasure carefully using a syringe or pipette, and never swig from the bottle.

And ALWAYS HAVE LESS – you can have a bit more if you need it. Use as low a dose as possible and wait until the effects are felt, because the strength of G can vary.

Be careful not to mix different types of G – GHB and GBL.

Because G can affect your memory, record the time you’ve taken your dose and keep it in a visible place.

Take G orally; don’t snort or inject it.

Avoid mixing G with alcohol or other depressant drugs.

If you can, use food colouring to identify your G so you won’t accidentally mix it with other drinks or water. This reduces the risk of overdose.

Store safely, out of reach of children and other adults.

Always dose small to survive rather than take a dose that can cause injury or death.

In 2015, Mike and Brenda Martin lost their daughter Heather Fotiades to overdose, leaving behind a distraught family: husband, children, siblings, parents. Six years later the Martins continue to urge pain patients and those in their immediate support circle to learn as much as possible about opioid-based medication and its potential risks.

My wife and I will always blame ourselves that we didn’t do enough, know enough. We’re always wondering if we could have done more… something… anything.

It’s a long story: a car accident, opioids, the failings of doctors. Everything from start to finish is painful.

Heather was 17 when she was injured. We were living in the Northern Territory then.

After the accident and leaving hospital, she continued to complain about pain in her foot and hip. No one seemed interested. They virtually said it was all in her head. But eventually they realised they’d missed finding small objects in her foot that she was walking on all the time. They also found that they’d left in some small screws that had worked their way right through her hip joint to stick out and scrape against the bone.

This all took a long time, because they were the experts and what Heather thought wasn’t valid. The easiest thing for them was to keep giving her opioids. There was never, to our knowledge, a “Sorry, we stuffed up” offered to her.

A number of things contributed to Heather’s death. Alone they would possibly have been okay, but together – and with the lack of interest and care given to her and the failure to taper her doses to a safe level – it was all too much.

In the end, all up she was on 11 different pills. The last one given to her by the pain clinic in Darwin was the one that finished her. That one pill told her she didn’t need to breathe.

Heather was 43 and married with a daughter and a son of her own.

It wasn’t until the coroner’s inquest into Heather’s death in 2017 that we started to think about medical practitioners prescribing high-dose opioids for chronic non-cancer pain. There were more than 50 boxes of prescription medication in her bedroom, including Endone, methadone, ibuprofen, Stilnox, Lyrica, Naramig, Endep, Panamax and an asthma inhaler.

The inquest found that there wasn’t enough being done to monitor the number of prescriptions and opioids Heather was given. The coroner found it had been a “preventable death” and that had the systems been in place to monitor it she would have still been here – that a service like real-time prescription monitoring would have saved Heather’s life.

We went home and began to research opioids, and we found what the doctors should have already known, what the inquest stated.

This type of drug should be only for short-term use. Most of these drugs, after that short term, then begin to make pain worse, not better.

We’re still trying to understand it. After reading up on the pills we still can’t fathom why the doctors gave her so many. They should have known they were wrong.

But no-one was blamed, no-one was found guilty. We know who we blame and who should have been held accountable.

That no-one was found responsible has been very hard for us to take. There wasn’t even a smack on the wrist. These are people we should be able to trust with our health.

Heather’s brother Sean has Down Syndrome and he misses her the most. He says, “Sissy gone”.

We want everyone out there to be aware of the ramifications of taking pills without checking what we’re being given. Technology now lets us look up anything, so look up your pills and read about them, then decide if you want to take them.

People might argue that it was partially Heather’s fault for taking more prescription drugs and going to other doctors, but hang on: if you’d been on all these drugs from the doctors for years, how would you feel? Of course you’d want them.

The most important question is whether we have a proper system in place to stop this happening to another daughter, sister, mother, wife.

When we speak about this now, we beg people: please don’t trust anyone but yourself. Research the drugs you’re being given before you take them, and always double check.

After recovering from psychosis that was brought on by using synthetic MDMA, Mike Carroll now channels his lived experience into supporting clients.

I’ve always had an obsession, almost, with stimulants. By the time I moved from Sydney to Melbourne, I’d done pretty much every “bad” thing I could.

I didn’t like myself. I used drugs to hide that – the only thing I was good at was using lots of drugs.

Career-wise I was doing personal development. I’d get up at 3am to teach online, then I’d work a 10-hour day at a caryard, plus I was breeding exotic parrots. It just got to be too much to handle.

I wasn’t taking MDMA to get high but to have the energy to sleep for three hours a day and work for 21. Of course, then I wasn’t able to sleep no matter how exhausted I became.

Eventually I was sacked from the caryard.

I wasn’t eating; I was only having stimulants and organic multi-vitamins. It was only the fact I’d been really overweight that kept me alive.

I believe I got caps of pure MDMA – synthetic MDMA. MDMA’s used by a lot of people in its pure form but without the reaction I had.

When I say, “the reaction” – I went into psychosis.

I was delusional, panicked. I had anxiety. I was calling 000.

I was seeing snakes in my house and in my car – slithering, massive snakes. I called the snake-catcher so many times he refused to come out to me in the end.

I became freaked out by my boarders at home. I had a paranoia of being watched – on social media, in the street, at the supermarket. I was seeing secret rooms, and I was convinced there were sex parties going on in other, hidden rooms that I couldn’t find. I was suspicious of any friend brave enough to spend time with me.

It was the scariest of times.

It was also the loneliest of times – lonely because drugs are designed to be consumed with people, not alone.

I realised I had to get help.

I went into a psych ward. It was amazing – I felt safe. There was a security guard at the front door so nothing could get in, and I could sleep. The three times I was there for four or five days I was seeing a psychiatrist and trying my hardest to let my body mend.

But every time, within 24–48 hours of getting out, I’d be using again.

It was complicated by the fact I didn’t like me. I’d never liked me, even though I hadn’t really understood why. In not loving myself I didn’t want to have intimate relationships with people or if I did, I’d become addicted to them.

I was in that space that I just don’t want anyone to be in. There was no-one around to care for me and say, “Hey Mike, you’re going off the rails here”.

At the same time, I had both my birth father and my adoptive father plus my grandmother passed away and I lost a relationship. There were lots of things that weren’t being dealt with.

I needed time out from the world.

Anti-psychotic medication was necessary. What was prescribed turned me from an amphetamine-high, sleep-deprived junkie into a month-long-bedridden being. This allowed me to transform, to repair my mind. I stayed on anti-psychs for two years then – because I was sick of feeling like a robot without emotion – I went off them: not abruptly, and with my doctor’s approval.

Moving to a small town changed everything for me. I connected in a different way than I’d ever done before with my life. I became interested in my food. I became interested in the sunrise. I became interested in exercise and being at the beach. I started working again, and then in March last year I got back into AOD counselling.

Now, I’m finally in control and liking myself for the first time ever.

In mid-2020, Penington Institute started a new Instagram page to collect tributes from people whose loved ones had passed away. This is one of those tributes.

Sarah was a complicated person with traumas and demons and sadness that she never quite knew what to do with.

Ultimately, her life was cut short because of this.

My sister was a person who used drugs, and used them in a problematic way – but to define her by her manner of passing is to insult her – she was a human being and she was more than that.

Sarah was a person that loved her family and was fiercely loyal – I believe that her truest self was seen in the rare moments of tenderness she showed the world.

Sarah, adoring her newborn nephew, napping with him in her softest down comforter.

Sarah, comforting me when I really needed it.

Sarah, the first one on the scene if I was in trouble, taking me for coffee, not making me talk about it.

Sarah, diving into the pool with me and floating weightless.

Sarah on Christmas mornings presenting each small, heartfelt gift, wrapped in impossibly perfect creases.

This is how I will remember Sarah – eternally beautiful.

At peace – finally.

My grief is immeasurable. But I see her in flowers blooming towards the sun and in small blue butterflies flitting through the woods.

She’s the stars and the sky and she’s free – she’s flying – just like she always wanted.

In memory.