Two people navigate the harsh reality of living with illnesses that the medical fraternity prefer to ignore.
In 2010, after teaching a contemporary dance class in the CBD, Carlie Angel completed a brisk cycle home to her second storey city apartment. She entered the foyer, was confronted with the staircase, and was struck with the chilling realisation that she simply could not make the climb. Her limbs, trained since childhood to contort to rhythm and beat, refused to obey her command. There she sat at the nadir, for how long she cannot recall, until, through gritted teeth, she crawled and crawled: one stair, then another, until she reached the top. She unlocked her door and collapsed into bed. Four days passed, or so she thinks, until she woke to find a new summit before her, but this time the apex was hidden in the clouds. It was a mountainous riddle: why had her body’s faculties abandoned her, and will they ever return?
It was a question that Indigenous rights advocate Renee Coffey had asked herself in 2011.
For Renee, chronic illness arrived with a whisper, a scarcely perceptible, completely invisible symptom; a nagging itch without an apparent source. This seemingly innocuous beginning, an irritation capable of being perhaps dismissed as insignificant, quickly morphed into much more concerning sensations and impairments. Her torso felt bound, as though she was the prey of an Amazonian boa. Like Carlie, her command of her legs began to falter. Fluid and instinctual movement was replaced by a conscious and cumbersome struggle. Her deterioration was swift, only adding to her concern.
But for Carlie and Renee, the increasingly unfamiliar landscape of their own bodies would quickly become only a portion of their problems. Both women, it would eventuate, are afflicted by diseases that are either little understood or little recognised and so both women have needed to fight battles on two fronts – the insurrection within and the apathy, academic arguments, and animosity without.
The first battle: Diagnosis
Illness was not a new phenomenon for Carlie; it had plagued her during childhood too. As a kid, she contracted cytomegalovirus and subsequently glandular fever. At the time, the only prescription was bed rest and for her to stop dancing. Still, at the onset of her current health crisis, Carlie did not cast her mind back to those early years. She had other theories.
“I just thought I must have a really bad flu or something. And then I tried to go back to life and teaching and stuff and it just got worse and worse and worse,” she says.
“I also thought it had something to do with stopping drinking which seemed highly unfair because most people stop drinking and they feel better.”
She sought to halt her deterioration by seeking medical diagnosis and intervention, but her initial results baffled doctors.
“I did have blood tests and everything looked perfect, like you should be Superwoman, and so they didn’t know what to do. Nothing was suggested. It was like, ‘you’ve got chronic fatigue, ok, have a fun life.’”
“It’s [was] just basically you have multi-system disfunction that we can’t work out from blood tests.”
After months of futile chronic fatigue treatment, Carlie had a conversation with a friend and fellow dancer who had been diagnosed with Lyme disease. Lyme is a tick-borne infectious illness caused by bacterium called a spirochete, and there is ongoing debate about whether it can even be contracted in Australia. Many doctors entirely refuse to acknowledge its existence.
Despite the prevailing medical climate, Carlie’s colleague was able to steer her towards a rare species – a local practitioner who was Lyme-literate.
“I got in to see a top specialist here who was basically seen as “end of the line, nobody knows what you’ve got, go and see this lady.”
“It usually took six months to get in to see her, but because I knew [a patient], she had a cancellation and I got in rather quickly. So, she did a whole heap of tests and ruled out a bunch of stuff and in the end, she was like, ‘look, you know, I’m pretty certain that you have Lyme’, and I was like, ‘yeah nah, I don’t have that’ because I didn’t want to have that.”
Medical experts continue to engage in furious debate about what constitutes a definitive test for Lyme or Lyme-like illness. While some claim that existing testing methods lead to false positives, a 2016 Australian Senate Inquiry into “Lyme-like illnesses” found that such conclusions are premature.
While testing facilities do now exist in Australia, at the time of her diagnosis in 2011 Carlie needed to pay almost $1,000 to have her sample processed by a US laboratory; a heavy slug for someone who was, by then, living in housing trust accommodation on a disability support pension.
Receiving her final diagnosis was bitter sweet; she had an answer, just not a very pleasant one, and – given the stance of much of the Australian medical fraternity – not one that would necessarily connect her to the help she needed.
When Renee’s symptoms morphed from mild to pronounced, she too sought assistance. She had even arrived at a self-assessment that was in the right ballpark, as it turned out, but her treating practitioner didn’t agree.
“I went to a local GP and told him I suspected it was nerve-related,” says Renee. “I actually thought I might be developing shingles. He completely dismissed this and sent me home. I felt completely demoralised, unheard, overlooked and very angry.”
As with Carlie, a recommendation from an acquaintance steered Renee towards an expert who could help.
“My boss actually recommended another local GP who was amazing. He took me seriously from the first appointment, ordered some tests, tried some creams, but when I returned a week later with no improvement; he immediately referred me to a neurologist.”
Renee’s neurologist suspected Multiple Sclerosis. When he snapped an x-ray of her spine against the backlit panel, there was no denying it.
Renee remains grateful for her luck in receiving answers much quicker than a lot of others in the same situation.
“For many with MS, this referral can take years. The neurologist was a real character, but he knew his stuff and ordered an MRI for me urgently.”
“For me, this process happened in a matter of weeks, which is a real blessing. And my new GP continued to work with me through the diagnosis but also later through my first pregnancy.”
The process of diagnosis was mercifully quick, but it still meant Renee needed to confront the fact that her entire future had changed.
She had lived a frantic life, walking parliamentary corridors and heading up Indigenous rights organisations, but in this moment, she was forced to halt her seemingly unimpeded progress. She had reached a crossroads.
The second battle: A Decision
Even while awaiting her test results, and aware that her potential condition was currently deemed incurable, Carlie had begun researching for potential solutions. This research involved the dreaded Dr Google, and tabloid television.
“Before I got my blood tests back, I started reading up online and started freaking out,” says Calrie. “I think it was through Today Tonight or something shitty like that that I saw a lady who had Lyme that went to Bali, so I looked into that program.”
This holistic program ran for ten weeks and included Infrared sauna, ozone dialysis, human growth hormone injections, exercise with oxygen on stationary bike, colonics with ozone, magnetic therapy, RIFE therapy, high dose vitamin IVs. To pay for the treatment, Carlie saved half the cost and crowdfunded the remainder.
“I could barely walk the 20 metres from my room to the front door [of the $8 a night homestay when I arrived], but by the end of it, I was able to go walking for a couple of hours; not hiking or anything but going to the city and the beach,” she says.
“It did help, and I think it meant that I was able to do other things when I got home that helped. I still deteriorated heaps afterwards.”
Her improvement initially offered her hope but this was quickly superseded by feelings of shame and despair.
“Part of me felt guilty that I hadn’t gotten better. In one way, it did save my life but I felt guilty for the people who had contributed. People [that have contributed] think ‘I’ve helped that person’.”
But even after this partial solution, and with nowhere else to turn for help, Carlie was in a constant war with pain that slowly began to feel like a war of attrition.
“Often, I thought [I wish] I could have an illness that was a bit more voracious and instead of just slowly dismantling [me], would just kill me.”
Her lowest point came after yet another unheeded call for help, four years into her battle with Lyme.
“I’d been in emergency the night before in a lot of pain, and then I went the next day to this doctor because the emergency doctor was so unhelpful, and he was like “I don’t know really, here’s some Valium.”
“I was in so much pain so I took the Valium and was like ‘fuck this, I’m going to have some drinks, drinking makes me feel better’.”
“After so much pain, it was great but then I knew my body was going to have to detox from it.”
After gulping a fistful of Valium, her next recollection was waking in emergency with a drip in her arm in the ER.
“When I woke up in hospital with the drip in me, I immediately pulled the drip out and wanted to go home and do it again.”
As she was living through this state of pain and confusion, Carlie found much of her support network has evaporated.
Before her diagnosis, Carlie was an exuberant party-goer enmeshed in the local arts scene; she could be found on the dance floor until the early hours at the Fringe Club during festival season. The friends and acquaintances made during this life didn’t necessarily know how to react to her illness.
“It kind of fascinates me now why our culture is so terrible at embracing illness and death as part of the life process and we just want to run away from it, in general.”
Part of this, she believes, stems from an inability to comprehend how small things can be of enormous help.
“The simplest thing, like coming and cooking dinner for me because I couldn’t do it myself or picking me up, even dropping off the shopping – people just don’t know how to do that,” she says. “They want to fix the whole illness or something and if they can’t do that, they just run away and you’re left on your own.”
Heroes did emerge, though.
“The most amazing strangers came out of the woodwork and were so supportive.”
One of those strangers, Brad, has since become her life and business partner, and an artistic collaborator. They met in the arts scene. Brad, an actor, would visit her to watch movies and talk, after working exhausting hours during Fringe. He came into her life at a time where she had forsaken the possibility of love, but became a profound source of healing for Carlie.
Almost immediately after being told she had MS, Renee realised two possible paths lay before her.
“The first was that I could use this diagnosis as an excuse to finally slow down, start saying no, relax and sit out the next few rounds. But the second path was to use this diagnosis as the reason I’d always needed to justify why I lived my life at this pace,” she says.
“And I almost instantly chose the second. So, when I first received the diagnosis, I honestly felt steeled. I was ready. Some of the most important people in my life have lived with incurable, severe disabilities since birth – so I felt perfectly placed to deal with my MS diagnosis head on.”
This resolve to confront and beat MS led Renee to search for a cure, even when everyone told her there was none.
In this search, she is grateful for the support she received from her friends and family. For Renee, a pair of ears is the only resource a friend needs to help someone who has just received a frightening diagnosis.
“For me, I think in the early days immediately following my diagnosis, I just needed people to listen,” she says. “I started to grow frustrated with people telling me everything would be ok – when I knew they had no clue.
“Dismissing my concerns just made me feel isolated and alone. I needed people to hear what was going on, to believe me and sit with that – not rush to reassure me.”
MS, unlike Lyme, is a recognisable disease in Australia and as such, Renee has not struggled in the same way as Carlie to find reliable and affordable access to practitioners. She has, though, found difficulty finding effective treatment.
The third battle: Getting better
In the past year, Carlie has returned to dancing professionally. She appeared as the principle dancer in ‘What Do You Do With An Idea?’ with the Adelaide Symphony Orchestra at the Adelaide Town Hall, and has recently returned from a workshop intensive with renowned choreographer Akram Khan in London.
It’s an outcome that seems highly unlikely, given Lyme is still classified as incurable and she has received no Western medical interventions.
Her return to health – although she still feels “Lymey” at times – has been a journey, not an instantaneous occurrence, but there have been a few pivotal moments that stand out in her recovery process.
The first was a simple cognitive shift – a change in perception.
“I do have a really strong memory of just looking out at a beautiful tree, because I was on the second storey, at these beautiful leaves that were outside this window and thinking, ok, if all I can do today is look at this tree and be ok with that, and appreciate that, and relax my body, as much as possible when it’s constantly on alert, then ok; today I’m just going to enjoy having the most enjoyable and relaxing day that I can,” says Carlie.
Following this realisation, she says she noticed a shift in her health. Then, it was a return to a form of ancient medicine – shamanism – that she believes has resulted in the most profound change to her health.
In 2016, Carlie received an array of Amazonian plant medicine treatments in an unlikely location: Slovenia. One of those treatments, kambo, was so powerful that Carlie and Brad have since become internationally accredited kambo practitioners. Kambo is a substance derived from the secretions of the P. Bicolor tree frog which, when applied to small burns on the body, triggers violent purging.
The process, which is sometimes referred to as a form of “ordeal medicine” is not scientifically proven, though investigations are underway. The frog secretion, when analysed, has been found to contain a cocktail of therapeutic peptides.
While such measures might seem drastic, when faced with a steady descent into disability and impairment without any hope for redress, extreme action becomes more and more attractive.
Through her self-directed search, Carlie came upon a cure and was not subjected to harm, but not everyone will have such luck. Indeed, it took her multiple failed attempts before she found any tangible improvement.
The 2016 Federal Senate Inquiry found that the medical profession cannot keep expecting the chronically ill to lie on their sick beds in wait for scientific consensus, because the inevitable move to alternative therapies, some of which are unregulated, could pose risks.
Dr Christopher Walker, the Acting Chief Executive Officer of Lyme advocacy group the Karl McManus Foundation, called for action to guard against potentially shady operators.
“We need our medical profession to be actively involved in the diagnosis and
treatment of these diseases, even at this confounding juncture, and put paid
to such subterfuge, ignorance, and outright incompetence.”
His statement contrasts markedly with the Australian Medical Association’s submission to the inquiry, which reflects their current stance towards treating Lyme sufferers in crisis.
“The AMA understands that this sentiment is
genuine and that a failure to reach a conclusive diagnosis can be stressful,
however the medical profession’s role is to make clinically appropriate
treatment recommendations based on the best available evidence. It is
ethically and legally appropriate for doctors to refuse demands by patients,
patients’ family members or other third parties for tests, treatments or
procedures that are not clinically appropriate”
Renee’s diagnosis made her determined, but she, too, was forced to seek answers outside of medicine’s normal boundaries. Unlike Carlie – who reached into the past – Renee looked to the future for emerging research and treatments that had not yet been integrated into modern medicine.
When first diagnosed, she deflected “helpful” suggestions from friends about potential treatments. Three months after receiving her diagnosis, though, a friend told Renee about remarkable results that MS patients were having when integrating diet and lifestyle changes, as recommended by Professor George Jelinek. She was ready to listen, but only cautiously.
“I was so sceptical when I first visited the website,” she says. “But as I read more, I realised the program was evidence-based and all of the components were actually explained on the web for free. No credit cards needed.”
“When the book arrived, I read it effectively in one sitting. The book came into the bath with me and then into bed! When I woke up in the morning, I implemented all of the lifestyle changes. That was seven years ago and I have not looked back.”
That is seven years without a recurrence of symptoms; seven years of raising children, working crazy hours, seven years of living life almost as though she is not ill at all. Despite the success of this approach, which substitutes medicine for a strict vegan and seafood diet and the consumption of a seemingly absurd quantity of Vitamin D and Omega-3, she has not found much support from the medical profession.
“I realised quite quickly at the start that it is almost impossible to find a neurologist who is supportive of an Overcoming MS approach.”
“Instead, I seek out practitioners who don’t take exception to me following the program. So long as I don’t have to go in to battle every check up – I’m happy.”
The final battle: getting the medical profession to change
Studies have shown that altruism and scientific curiosity are the main motivations for those who enter the medical profession, but upon arriving, these motivations are often stifled by the overwhelming demands from patients. Physician burnout is a phenomenon that has doctors contemplating leaving the profession in droves.
With limited time available to treat patients, there will necessarily be a reliance upon guidelines and checklists that apply well-established knowledge. Checklists simply don’t work for new and novel illnesses, nor does standardised testing.
The Senate Inquiry heard submissions that doctors were too dependent upon pathology and the idea that if symptoms can’t be quickly verified by routine testing, then they must be psychological or simply undeterminable.
Instead of clutching to lab results in all instances, Dr Richard Schloeffel, chairperson of the Australian Chronic Infectious and Inflammatory Diseases Society (ACIIDS), said that doctors should rely upon observation as a primary tool. When new illnesses are presenting themselves, this should prompt research.
The Senate Committee recommended that the Government urgently invest in research into the causes, treatments and testing of Lyme. Renee, as an MS Ambassador, has fervently sought to raise awareness and funds for research into cures for her illness. The research process is slow, methodical and cautious; this is what makes it effective in the long term, but this is of little comfort for those that are struggling and dying now.
For people like Carlie and Renee, and for those who benefit from their hard work, intelligence, friendship, and love, there’s no time to wait for all the answers. For now, just some of the answers will do.
Remark — Excerpts from Carlie Angel’s Phrenic were recorded at a rehearsal that was hosted by the Australian Dance Theatre in November of 2018.