Legitimizing Pseudoscience: What’s The Harm?

This column ran in The National Post on March 24, 2016.

(Response to Karen Selick’s lies found below this piece)

After weeks of trying “natural” extracts and homemade remedies like smoothies cut with ginger root and horseradish to cure a suspected case of meningitis, 19-month-old Ezekiel Stephan’s tiny body had so deteriorated that he was too stiff to bend. Unable to be sit in his car seat, Ezekiel’s parents, David and Collet, loaded a mattress into the back of their vehicle to take him to a health practitioner — not a doctor.

They planned to drive to Lethbridge, Alta., to visit a naturopath, whose clinic they’d contacted days earlier in search of something to “boost Ezekiel’s immune system.”

Only after their son stopped breathing did the Stephans think it wise to call 911. In a desperate bid to save time, they drove to meet the ambulance, performing CPR en route. According to Collet, Ezekiel “was blue by the time we met up.”

Now on trial for Ezekiel’s death, the Stephans pleaded not guilty to the charge of failing to provide the necessities of life, maintaining they’d pursued a legitimate, alternative course of treatment. And for those immersed in the pseudoscientific realm of “alternative health care,” this, indeed, seems to be a perfectly reasonable defence. The same government that is now prosecuting the Stephans has also granted the College of Naturopathic Doctors of Alberta (CNDA) the power to self-govern their industry — in essence, the state is now prosecuting parents for pursuing cures from a modern-day snake-oil industry that it licenses and legitimizes.

When it granted the CNDA its powers back in 2012, Health Minister Fred Horne said that he and his fellow elected representatives “believe the practices that will be engaged in by (naturopathic) professionals are safe and effective and meet the highest possible standard.”

Dr. Allissa Gaul, founding president of the CNDA, boasted the decision meant that “Albertans can have confidence … they have a Naturopathic doctor who meets stringent competency and practice requirements.”

It’s worth noting Dr. Tannis, the Naturopath who prescribed Echinacea for a child suffering a life-threatening illness, graduated from the Canadian College of Naturopathic Medicine in 2003 and is licensed in “good standing” in Alberta. (In court, she said she told the Stephans to take their child to an emergency room.)

The profound suffering and preventable death of Ezekiel has rightly provoked heated discussion about the validity of so-called alternative medicine, prompting finger-pointing toward all who enabled and abetted the long deterioration and ultimate death of a toddler whose ailment was both vaccine-preventable and entirely treatable.

One thing is clear: Ezekiel is a casualty of pseudoscience; his death facilitated by the allure of alternative medicine.

Naturopathy, for instance, is not a form of medicine, but a system of belief; its approach to treating illness reliant on the theory of vitalism. That is, disease is viewed as being caused by an imbalance of vital forces and, thus, the treatment rests in the restoration of those forces.

Despite its claims to ancient roots, naturopathy was invented by Benedict Lust, a German immigrant to the United States and self-proclaimed “doctor” who was ultimately convicted for practising medicine without a licence. To this day, many procedures on its standard list of practices and cures have not passed scientific muster.

Naturopathy relies on dubious diagnostics — hair analysis and IgG Food Intolerance screening, for instance — to identify non-existent deficiencies or fabricated ailments. The prescribed interventions, conveniently, are on hand and sold directly by practitioners.

Treatments range from the proven-ineffective and largely innocuous, such as Vitamin C infusions and herbal supplements, to the far more dangerous and potentially fatal ozone and chelation therapies.

Naturopathy preys on the critically and terminally ill by peddling false hope and sham treatments with exorbitant financial and emotional costs; it fuels scientific illiteracy by accommodating those who misunderstand or distrust legitimate medicine, prescribing futile detox and cleanse regimens.

Naturopaths endanger public health by agitating against vaccination, selling homeopathic nosodes, which, to be clear, are entirely inert.

As Timothy Caulfield, professor in the Faculty of Law and the School of Public Health at the University of Alberta wrote in 2013: “There is no evidence that homeopathy works, and given the absurd nature of the proposed mechanism of action, no scientifically plausible reason that it should work.” None.

Although homeopathy was not prescribed in Ezekiel’s case, it remains one of the central tenets of naturopathy. And when governments capitulate to the demands of a pseudoscientific lobby, as Alberta did in 2012, such nonsense is granted authority.

Though undoubtedly lucrative, embracing and incorporating magical thinking into the realm of evidence-based medicine is both ethically questionable and professionally irresponsible.

If naturopaths, homeopaths, osteopaths or any of the numerous “natural” or “holistic” practitioners want to be regarded as heath-care professionals and afforded the same respect, opportunities and privileges earned by those working in the evidence-based medical system, they must agree to be held to the same standards in terms of education, certification and efficacy of their prescribed treatment.

Until the alternative health industry is required to demonstrate the validity of its existence, the corpses that refute it will continue to mount. And all who overtly or indirectly enable the spread of pseudoscience share the blame for the casualties.

 

————

 

On April 2, the Lethbridge Herald published an incredibly irresponsible and non-factual response to my column written by Karen Selick, a woman who is involved with the alternative / naturopathic (and conspiracy-minded) industry, and who has received financial contributions from Naturopaths for her raw milk lobbying efforts. She has also appeared at numerous naturopathic/alt-med conferences and events.

She believes Monsanto (glyphosate, in particular) is the cause of autism, along with along with vaccines, of course. She is a strident anti-vaxxer and thinks there’s a global conspiracy (thanks Big Pharma!) to prevent people from accessing natural remedies for things like cancer. (see bottom FYI for more)

Below is a line-by-line correction of her op-ed, ironically titled Clearing up factual distortions

Everything bolded is mine

——

The National Post recently published an opinion piece that exemplifies how moral panics get started.

If by “moral panic” Selick means “necessary scrutiny of an industry which, at this moment, claims (among other things) that cancer has an “emotional cause” and is cured by proven-ineffective (and expensive) ‘alternative’ methods,” then OK.

Alheli Picazo’s March 24 article, entitled “Alberta Shares the Blame” (the online version was called “When naturopathy kills”), dealt with a criminal prosecution currently before a jury in Lethbridge. David and Collet Stephan have been charged with failing to provide the necessaries of life to their son Ezekiel, who died in 2012 of meningitis.

Correct. Also: I do not write the headlines.

So far, only the prosecution has called witnesses. The case stands adjourned until April 11, when the defence will begin. But Picazo has already rushed to judgment.
She calls Ezekiel’s death “preventable” and labels him a “casualty of pseudoscience.”

Yes. Ezekiel’s death was 100% preventable, and yes, as he did not receive the vaccination to prevent the form of meningitis he died from, nor did he receive legitimate medical care before it was too late to allow him to be treated for, and recover from, said meningitis  (due entirely to his parents’ extreme anti-vax stance and belief – and personal business – in “holistic” remedies) he was a casualty of pseudoscience. 

More on the Stephan family business HERE 

Very thorough (and unvarnished) reading on this from evidence-based medical perspectives HERE and HERE

HERE and HERE are just a pair of examples of the father’s anti-vax musings. HERE and HERE from the mother. 

HERE is the father on an anti-vax radio show pleading his case 

Here are the “facts” as Picazo placed them before readers:

“After weeks of trying ‘natural’ extracts and homemade remedies like smoothies cut with ginger root and horseradish to cure a suspected case of meningitis, 19-month-old Ezekiel Stephan’s tiny body had so deteriorated that he was too stiff to bend. Unable to sit in his car seat, Ezekiel’s parents, David and Collet, loaded a mattress into the back of their vehicle to take him to a health practitioner – not a doctor.”

Those parents must be monsters, right? Actually, no. What’s monstrous is the number of factual distortions that Picazo packed into a single paragraph, with not even an “alleged” kicking around to hint that there might be another side to the story.

Notice not a single “factual distortion” was directly pointed to… because there are none. These are knowable – and known – facts. That Selick has decided she doesn’t want to believe said facts doesn’t make them any less true or warrant the addition of “alleged.”

There is no ‘other side’ to a ‘story’ here. 


Ezekiel’s “suspected meningitis” did not go on for weeks. He had started exhibiting symptoms of a cold, or at worst croup, around Feb. 27, 2012. Over the next two weeks, his symptoms disappeared and returned twice, sometimes appearing like flu, but never including seizures or rash.

Actually, yes. The meningitis did go on for weeks. In February, when Ezekiel first started showing signs of illness, his parents thought it was a croup. And it was a steady deterioration from that point – from the bacterial meningitis – until his death. 



Further, “never including seizures or rash” is meaningless.

It was not until March 12 that a family friend – a nurse who coincidentally knew that there had been a recent case of meningitis in her hospital – mentioned the possibility of viral meningitis. But based on Ezekiel’s mostly asymptomatic condition that day, she said, he’d probably be turned away from a hospital emergency room.

No, that’s not what the nurse-friend said. She told the parents to take Ezekiel to see a doctor.

The parents chose not to, and in their re-telling of the story now, they’re claiming (and allowing others, like Selick, to claim) they’d have been turned away ‘because our socialist healthcare system does that.’



Those were not the nurse-friend’s words.

Picazo makes it sound as though Ezekiel was getting progressively stiffer over a period of weeks until he was loaded rigor-mortis-like into the car to visit a naturopath.

Yes, that’s because he was. Those are the facts, and entirely knowable based on the autopsy.  

Here is a thorough read of this from one who knows.

In fact, on the morning of March 13, he had been in his car seat, perfectly able to bend.

No, that’s not a fact. It’s a flat-out lie, actually. The parents’ own statements to RCMP (played in court) refute Selick’s assertion.

But he was cranky and uncomfortable, so rather than aggravate his distress, they removed him from the car seat and let him lie on his foam crib mattress on the back seat.

“Crib mattress”. That’s cute. No, it was not a crib in any way. It was just a mattress and the parents never attempted to present it as anything but.

When a crisis arose that evening – Ezekiel temporarily stopped breathing – his parents called 911 and set out for the hospital. Picazo says, “Only after their son stopped breathing did the Stephans think it wise to call 911.” But wait – 911 is for emergencies. People who call 911 because their kid has a cold can be fined up to $10,000 in Alberta for making a frivolous call.

Yes, 911 is for emergencies — as in a deathly-ill child. Can Selick point to any case where a person suspecting their child needed medical attention (even if it were a simple cold or flu) called 911 and was subsequently fined/charged?

Nope.

The unfortunate truth that Picazo omits is that meningitis is an illness that can strike suddenly and kill within a day or two. Usually, the symptoms progress very quickly from bad to worse. Ezekiel’s waxing and waning cold symptoms are not typical, and might indeed have indicated nothing other than a cold at that time.

There was no omission. I have a word count to adhere to. I’d love to have gone into great detail about the illness itself.

Also: the “Ezekiel’s waxing and waning cold symptoms” line is, again, intentionally misleading. Ezekiel’s symptoms were not mere cold symptoms, and the extent to which they fluctuated is in doubt.

Again: Autopsies don’t lie. (See above hyperlinks to physician/surgeon SBM writers)

(More on the symptoms according to testimony) 

The Meningitis Research Foundation of Canada’s website contains dozens of stories of meningitis cases that killed or seriously disabled their victims within days. In numerous cases, doctors had examined the victims not long before and sent them home with diagnoses of cold, flu, food poisoning, ear infection, gastroenteritis, pneumonia, etc.

And here Selick reveals her true motivations. She is an activist against the Canadian medical system, and is a documented agitator against ‘socialized health care.’ She regularly pulls the “but doctors make mistakes too! Hospitals kill too!” line to distract from scrutiny of the alt-med industry — one to which she belongs and believes in religiously.

(The Stephans use the same tactic)

The only definitive way of diagnosing bacterial meningitis is a spinal tap in which fluid is drawn from the spinal cord and tested. This excruciatingly painful procedure exposes patients to additional risks. Doctors do not ordinarily inflict it upon patients who appear to have merely colds or flu.

Yes, a spinal tap is a necessary diagnostic procedure, because that’s how real medicine works. And no, it’s not “excruciatingly painful.” It’s uncomfortable yes (I’ve had a few) and gross to think about if you’ve never had one, but nothing more.

And again: Ezekiel was not simply ill with – or exhibiting mere signs of – cold or flu. Further, that fear of a spinal tap was one reason the parents avoided the hospital.

So far at the trial, none of the prosecution’s doctors has claimed that they could have definitively diagnosed meningitis from the symptoms Ezekiel exhibited at the time. None has claimed that Ezekiel could definitely have been saved, even if he had received aggressive treatment.

Not true at all. They could not speak definitively on a child they had not seen, but it was testified and is knowable what the outcome would have been for a child in the exact same circumstance as Ezekiel if properly treated.

Picazo says the Alberta government shares the blame for Ezekiel’s death because it licences naturopathy.

However, she fails to mention that the ambulance that met the Stephans on their drive to hospital had been stripped of some equipment by that same Alberta government approximately a year before. Consequently, it had no air mask small enough to treat Ezekiel en route to hospital. He spent eight and a half minutes in the ambulance without air. A later CT scan showed brain injury consistent with lack of oxygen.

No, actually. That’s another lie from Selick. The CT confirmed that lack of oxygen was NOT to blame.

A week after Ezekiel’s death, infant air masks re-appeared in ambulances. I can’t help wondering whether the Alberta government is prosecuting these parents to divert attention from its own possible liability.

Gee, that sounds familiar.. 

Quite familiar, in fact. 

Karen Selick is a lawyer and writer based in rural eastern Ontario. During her cold symptoms last week, she did not suspect meningitis and did not rush to the hospital demanding a spinal tap.

Another attempt to confuse cold/flu symptoms with advanced bacterial meningitis.

Also, even if Selick had meningitis and rushed to hospital demanding a spinal tap, only a doctor can decide whether one is warranted. And only a doctor can order one.

Nice narrative, though.

FYI:

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Ugh Canadian health care, amirite?! 

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HERE she is pushing the Shona Holmes lie. And HERE are the facts.)

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( Facts on glyphosate HERE, HERE and HERE )

FTR: This is something the Stephans believe as well. Here’s the mother:

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(Links to THIS )

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(Links to THIS

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(Links to THIS

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I’ll leave it for you to judge the merits of Selick’s piece, and the wisdom of the Lethbridge Herald in running it.

—-

Update:

On April 14, the Lethbridge Herald ran my response.

The op-ed in its entirety can be found below:

On April 2, the Lethbridge Herald published an incredibly irresponsible and inaccurate op-ed by Karen Selick, a woman who’d taken issue with a column I wrote for the National Post centred around the death of Ezekiel Stephan — a preventable tragedy for which his
parents are currently on trial.

Selick accused me of “factual distortions,” yet failed to specify a single one. Why? Because there were no inaccuracies to identify. All the information in my column was accurate — and verifiably so — unlike the numerous false claims Selick resorted to in the effort to rebut my piece.

For instance, Selick wrote that the nurse-friend who paid the Stephans a visit had counselled against taking Ezekiel to hospital because “he’d probably be turned away from a hospital emergency room.” This is a fabrication by Selick. In fact, the nurse-friend suggested the child might have meningitis and specifically instructed the
parents: “I think you should take him to a doctor.”

Selick also asserted “on the morning of March 13, (Ezekiel) had been in his car seat, perfectly able to bend.” This, too, is not true. According to the parents’ own statements to RCMP — which were played in court — Ezekiel’s body was so stiff from illness that he could not sit in his car seat, which is why he was placed on a mattress (and not a specially-made “crib mattress” as Selick portrayed it as — just a small mattress) in the back of the family vehicle.

Selick then parrots a narrative directly from the father’s own PR offensive — taken either from a conspiracy-laden radio interview or one of many social media updates — alleging that Alberta Health Services was to blame for failing to revive Ezekiel once they were
finally, albeit it far too late, called upon.

“The ambulance that met the Stephans … had been stripped of some equipment by that same Alberta government,” Selick wrote. “Consequently, it had no air mask small enough to treat Ezekiel en route to hospital. He spent eight and a half minutes in the ambulance
without air. A later CT scan showed brain injury consistent with lack of oxygen.”

While it’s true the ambulance lacked a properly-fitting mask for Ezekiel, Selick’s claim of brain-death from lack of oxygen is yet another falsehood. What the CT scan confirmed was that lack of oxygen was not to blame for the child’s death. As medical examiner Dr. Bamidele Adeagbo testified, Ezekiel was brain dead when EMS met up with Stephans. Adeagbo explained what differentiates a brain deprived of oxygen from one suffering meningitis, and concluded there were no signs Ezekiel’s brain died from lack of oxygen.
Ezekiel, he confirmed, was dead before EMS intervened.

Why did Selick feel the need to respond to something I wrote in a publication other than the National Post, the paper which ran my column? I would hope it’s because, like any responsible news outlet, Selick’s submission would be seen as questionable due to the misrepresentations of the case and additional inaccuracies to the ones detailed above.

Readers should also know that Selick is an adherent to, and an affiliate of, the alternative/natural health industry and has appeared at numerous naturopathic/alt-med conferences and events. She is a long-time agitator against the Canadian health-care system, and played a prominent role in pushing the Shona Holmes story and scaring Americans into believing health-care reform was not in their best interest.

Selick seems to believe there’s a government conspiracy to keep treatments and cures from the public so that the pharmaceutical industry can profit off disease, and she is a full-fledged anti-vaxxer who believes vaccines cause autism.

Selick is free to believe what she wishes, of course. But her disregard for evidence, dismissal of science, and embrace of pseudoscience isn’t merely another point of view for a newspaper to print. Nor was her op-ed, as she argued, “another side to the story”
to be presented. Selick’s misrepresentation of the case was a dangerous effort to grant legitimacy to a modern-day snake-oil industry — one in which she has a personal stake.

As I argued in my initial column, people who view the world as Selick does, when reading such nonsense as Selick wrote, are led to believe that there is an alternative to evidence-based medicine.

This, in turn, leads to naturalistic fanatics feeling confident in their deeply-held beliefs that some mythical ‘alternative’ exists to necessary medical intervention should they, or their children, come down with a serious illness — the consequence of which is on display
in a certain Lethbridge courtroom.

More facts about this case and further information on Selick’s connections to the Stephan family and her role in their co-ordinated misinformation campaign can be found  HERE. 

A Most Undignified Death

This column ran in The National Post on January 20, 2016.

The Supreme Court hearing that granted the Liberals a four-month extension to review assisted-dying legislation last week brought out the usual coterie of critics, many of them religious. We are being warned about slippery slopes and disposable lives. Some of the concerns are fair, others essentially boil down to, “My God wouldn’t want you to do this, so it should be illegal.”

One of the more interesting, and credible, reactions, however, from those who would restrict access to euthanasia on moral grounds is that better palliative care is all that’s needed to fully tend to those in the end-stages of life. There is some truth in this — Canada does need a better palliative-care system, for those who’d wish to take that route.

This argument, however, ignores the uncomfortable reality that a sort of medically facilitated death is already well-established in the medical system, but through the cruellest of possible methods. Simply put, our terminally ill are permitted to starve themselves to death.

This isn’t a decision made lightly by any involved — the patient, their family, or the medical professionals tasked with keeping the patient “comfortable” — and it’s an excruciating experience for all. The body can, for a short time, rely on reserves and stores to maintain some basic level of function. In time, though, it begins to consume itself, seeking to convert any usable tissue, including organs, to fuel.

In 2013, I found myself in an unfortunate and frightening medical situation which, by the grace of God, I survived. When I was in hospital, I had a roommate, a woman in her late-70s who, as I fended off sleep for the very real possibility I’d not wake up, sought for herself a very different outcome.

My situation, a gastro-intestinal disease that took hold and spread, making digestion of food impossible, was not terminal. Or, at least, was not meant to be. Her cancer, though, was, and was as at such an advanced state she could no longer handle the daily intubations; the constant poking and prodding and needling; the unrelating physical and mental agony. She was far beyond treatment, and she now had an intestinal obstruction which required surgery to rectify — one which would not add quality to her remaining days, assuming she survived the operation, but would simply allow for the continued oral intake of nutrition.

The alternative was to sustain life through intravenous feeding (TPN). I’d already had that PICC line inserted — a long, specialized IV threaded from the bend in the elbow, up the the arm, and directly into the heart — to deliver basic nutrition.

She was entirely of sound mind and had all other affairs in order, and her family didn’t object when she refused to consent to either the surgery or the central line, asking instead to be allowed to die.

We shared the same highly-skilled surgeon. He was tasked with directing two very different roads of treatment: fighting to keep my body supplied with nutrition while I recovered, and overseeing her demise.

Both our bodies were self-catabolizing. Both were in various states of multi-organ failure — the putrid, potent, unmistakeable stench of renal failure was inescapable and unbearable. For me, the threat of imminent death was terrifying. For her, it was a most merciful gift — an escape from the hell of a body in the final stages of rebellion.

Her suffering was considerable, and I lay in silence, listening as her anguish intensified. Sometimes what I heard carried over into dreams. When asleep, I heard the very real sound of nurses struggling to place a tube in her esophagus, played out in my own shallow nightmare in which I was choking on my own and failing to breathe.

After a series of conversations between my roommate, our surgeon, and her family, she was moved to a private, under-no-circumstances-to-be-disturbed room directly across from the one we’d shared, where she’d quietly deteriorate and rapidly emaciate. Her son held vigil, stoic, at first, and then less so.

The end was neither merciful, painless, nor swift. It took weeks for her to die. Her pain eventually came to an end, but her son’s never will. Had euthanasia been available, as she wished it was, it would have spared my roommate the drawn-out ravaging, and her son the unnecessary, additional trauma. The end result, of course, would have been identical.

It’s not clear to me where the ultimate line should be drawn in terms of age or disease, or what would constitute sufficient level of suffering — or how the extent of which would be measured. These issues are, to state the obvious, complicated. But as the government works to draft new assisted-suicide legislation, it’s essential people be aware of what is currently the status-quo, and why it cannot be allowed to stand. We’ve had a form of medically facilitated death in Canada for years. It is far crueller, but no less fatal, than a quick, merciful needle.

 

Ending The Stigma

This op-ed appeared in the Ottawa Citizen on January 28, 2014.

 

On Dec. 29, Christopher Peloso, the 40-year-old husband of former Ontario deputy premier George Smitherman, was reported missing.

“Freedom from depression has been elusive for Christopher,” Smitherman tweeted on the eve of the 29th. “We fear for his safety.”

A followup tweet issued just hours later linked to a brief statement which confirmed that Peloso had been found dead, noting (the family) would “find comfort somehow in knowing that he has found peace from the depression that has wreaked havoc on his mind.”

At Peloso’s memorial, Smitherman eulogized his late husband, telling those assembled in the Toronto community centre he would “not be afraid, in Christopher’s name, to tell his story and to tell our story … A man took his life because the pain in his brain was unrelenting.”

Smitherman addressed those who might be dealing with depression: “If you’re holding something back and you bring it out into public life, it is the first step and it is cathartic and it is powerful.”

To that end, Peloso’s father, Reno, spoke of his son, noting “Chris suffered from depression and committed suicide and there is no shame in that.”

Not only was this a powerful message to send during a period of such personal grief, but it was a remarkable, and incredibly necessary, break from the norm; of glossing over the heart of the tragic situation; of speaking in euphemisms and dancing around the issue that caused so much pain, such unrelenting anguish, that the only reprieve Peloso thought he could find was through death.

Though Peloso’s loved ones were widely lauded for their openness in discussing his lifelong battle with depression, the notion that suicide be addressed so matter-of-factly proved disquieting for many. Some feared that accepting Peloso’s final act without judgment somehow glorified it, that failing to attach shame or scorn to the suicide essentially validated, or worse, encouraged it.

These widely held, though unfounded, concerns demonstrate why it was necessary for Peloso’s family to address his illness — including its end — so candidly: to break the stigma about what it is to live with, or die from, mental illness, so that others might find the courage to seek help for their own demons, or, for those who have lost love ones in a similar manner, to leave behind the guilt or sense of having failed the deceased.

And breaking the silence, erasing the stigma, is what Bell’s Let’s Talk campaign on Jan. 28 is all about.

One in five Canadians will experience some form of mental illness in a given year. Yet a report from the Canadian Medical Association revealed that only half of Canadians would tell a friend if they had a family member with a mental illness, as compared to disclosing a family member’s diagnosis of cancer (72 per cent) or diabetes (68 per cent). But why is that? Like any ailment, mental illness manifests in a number of ways, and to varying degrees of severity. Not every cancer is treatable; broken bones don’t always heal correctly the first time. Some diabetics are able to manage through diet alone, while others require multiple shots of insulin, daily. That lack of understanding of what constitutes mental illness, especially when it presents as a chronic or severe condition, is what drives the stigma surrounding it. And the apprehension about openly discussing the more extreme cases of mental illness — those who self-harm, commit suicide, are plagued by intrusive, sometimes violent thoughts, are crippled by rituals or compulsions — only furthers the ignorance surrounding such conditions.

The same CMA report found nearly a third of Canadians reported being fearful of being around someone suffering from a mental illness; almost half believing people use the illness as an excuse for bad behaviour, and fewer than half reporting a desire or willingness to associate with a friend who was diagnosed with a mental illness.

How terribly sad. It should be noted, however, that such beliefs aren’t because people want to exclude or isolate those suffering from a mental illness. Only recently have people begun to buck the societal norm of only speaking of mental illness in whispers, of “othering” those who suffer. In many cases, people want to better understand; they are genuinely interested in learning more about what it means to live with a mental illness, about the challenges faced not only by those diagnosed, but how their experiences, in turn, affect the lives of those around them.

The problem is, they are unsure of what, or how, to ask.

They don’t want to intrude, are afraid of offending. So they instead make assumptions, quietly draw their own conclusions.

Which then leads to misconceptions, feeds into the fear, and further perpetuates the stigma. This is why Bell’s Lets Talk campaign is so important: It provides a platform for a genuine conversation between those living with mental illness and those who’ve never experienced it. Those afraid to ask questions can follow as people share their stories of living with the disease, silently gaining a better understanding of what it means to have a mental illness. Many who suffer in silence find strength in seeing others talk openly about their own struggles and, in turn, find the courage to open up, and if they haven’t already, seek help.

The family of Christopher Peloso understood the value in having a candid dialogue about the illness that plagued him, and ultimately claimed his life. They were, in essence, doing exactly what the Let’s Talk campaign aims to accomplish on a larger scale: To end the stigma surrounding mental illness, talk openly and honestly about all aspects of the disease, foster a better understanding about life with mental illness, and to encourage those who are suffering to reach out.

There is no shame in having a mental illness, and there’s no weakness in seeking help.

And there’s no better time than now to talk about it. So Let’s Talk, Canada.

 

Yes – Let’s Talk

Though dismissed by some as a cynical marketing ploy, Bell’s Let’s Talk campaign not only succeeded in raising $4.8 million for mental health initiatives, but also provided a forum for canadians to share their stories, reach out for help, and address the stigma associated with mental illness.

That conversation, seeing people I know and respect open up about either having/had issues with mental health, or knowing – and still loving – someone who does, was, to me, so much more valuable than monies raised.

Though mental illness itself can, and does, destroy lives, the stigma attached to those afflicted can be just as devastating.

For me, the stigma was nearly fatal.

My story is long and complicated, so I will do my best to include just the information necessary to understand my experience and explain how it relates to where I am today. I don’t mind going into greater detail and am more than happy to elaborate/answer questions people might have regarding my experience with mental/emotional illness, but I think it’s important to stay focused on the topic of stigma for the purpose of this post.

At the age of ten I was diagnosed with an anxiety disorder, and by eleven I was in the throes of depression, battling a severe eating disorder. I was hospitalized for 3 months for the anorexia at age twelve, and again for two months when I relapsed at fourteen — a relapse due, in part, to the added burden of OCD.

I’d been an incredibly talented competitive dancer (tap, jazz/contemporary, ballet) up to that point – also competing as a swimmer and in soccer in both my age group and the one above – but found the anxiety related to international travel demands made continuing on this path impossible. I continued with all non-competitive aspects of dance and scaled back my commitments in soccer and swimming, but the competitive void was soon filled with what had long been my passion, though had always played second fiddle to dance: gymnastics.

With the eating disorder conquered, my dietitian continued on as my sports nutritionist and closest confidant. She’d been by my side since I was eleven, and I trusted her.

My athletic career as a gymnast included some of the best years of my life. I was healthy, strong, and successful, and for the first time, I was comfortable being me. I liked myself. I loved that I could push harder than everyone else; I loved the battle between mind and body when engaged in intense conditioning regime, because I knew I could push my body to beat my mind, every time. I craved the exhaustion, loved the pain, and found a sense of accomplishment in the fact that, though I wasn’t the most advanced gymnast in the gym — I dedicated myself to the competition realm later than others, and though it wasn’t in my future a few of the girls I trained alongside went on to become Olympians, others to successful NCAA careers — I was the strongest, the most dedicated, the hardest working and fittest athlete there, and was recognized as such. I was held up as the epitome of physical and mental strength; Where others had to be pushed, I had to be told to slow down. Where others were urged to work harder, I had to be reminded – if not forced  – to rest, to take a break. To let myself relax.

And that felt incredible.

What didn’t feel quite as wonderful was what was happening physically, on the inside. I’d had digestive issues for some time, but always assumed it was due to the physical demands of my sport. After a few years of progressively worsening symptoms, however, the discomfort in my abdomen was replaced by as intense and chronic pain, and I was bleeding. A lot. Every time I landed I felt as if my intestines were being torn from my body.

I know I should have gone to the doctor at that point. Hell, I should have gone long before it got to that point, but I didn’t. I was afraid I’d be told to scale back training; that I’d have to stop competing. And, like any dedicated athlete, I had dreams to pursue, dammit!  I didn’t have time for a sabbatical.

When things really started to fall apart, they crumbled fast. I was losing weight at an alarming rate. What used to be an endless source of energy, my body had nothing left to give. My coaches, my family, my friends all assumed I’d begun to relapse back into an eating disorder, despite the fact I was eating, down to the last gram, the same diet I’d been following for years – the one set out by my personal dietician, who was herself at a loss to explain what was happening.

I’d expected my (relatively new) family doctor – let’s call her Dr. K – would be eager to start testing for whatever was going on, but she quickly chalked it up to an anorexia relapse. Why? Because that was the simplest explanation, and the history of anorexia apparently clouded every visit I’d ever had with her.

When I told her of my intestinal symptoms she brushed them off as psychosomatic; when I showed her the blood, she insisted it was menstrual (even though, as is typical of elite female athletes, I was amenorrheic).

One day, Dr. K decided she was going to admit me to the psych ward. I told her I’d go voluntarily on one condition: that she let me meet with a gastroenterologist while I was there.

She reluctantly agreed.

The GI doctor took one look at me, felt around my abdomen and ordered an immediate scope. Lo and behold, the colon was indeed bleeding, and there was some sort of abnormality – an ulcer? tumor? Chron’s? – in the ascending colon.

A biopsy was ordered but came back inconclusive (or so I was told by Dr. K) and the GI fellow left for a previously scheduled mission trip before I could speak with him again.

I was referred to the GI department in London, but Dr. K refused to send the GI report, so I was met, yet again, with skeptical eyes. The history of anorexia, and whatever had been written by Dr. K, told them all they needed, or rather, all they wanted to know.

I had a J-tube inserted to provide nourishment via machine, but when the weight still hadn’t returned, I was blamed for somehow sabotaging the effort. I soon developed a high fever, and a grotesque odour was emanating from the site of the tube. I had so little energy I couldn’t even make it to the car under my own power. I arrived at emerge in London where I was shuffled to a back room where I remained for hours, splayed out on a gurney, gasping for breath, as the doctor responsible for the tube’s insertion told me that he “will not remove a feeding tube from an anorexic; you are just trying to get out of eating.”

Having remained silent until that point, my mother demanded I be evaluated by someone who hadn’t seen my chart, who didn’t know of the eating disorder I’d battled, and let me stress once again, successfully overcome years ago. She got her wish, and the emerge physician quickly determined the J-tube was infected and I’d developed sepsis. The tube was immediately removed and I was put on a course of IV antibiotics and, after about a week in hospital, was sent home.

By now my family was quietly preparing for my death. My sisters had already written me off, as it was too painful to watch the daily deterioration of my health. As if the years watching their little sister fight through depression, anxiety and an eating disorder hadn’t already strained our relationship, witnessing this prolonged death march proved to be a breaking point. On more than one occasion one or the other would tell me she wished I’d just die already, because the situation, as it was, was tearing the family apart.

Throughout everything, I had never shied away from my mental and emotional struggles; our community was a small one and hiding any medical condition was simply not possible. So I embraced it, offered to talk about my experiences to help educate others, and always took full ownership of my illnesses. There was never shame or denial of the depression, anxiety, anorexia, or OCD. Perhaps it was because I was so young that people were understanding. I mean, who could blame a ten, eleven, twelve-year-old for such problems?

So it was that much more frustrating when, suddenly, I was being accused of lying; of being in denial of a problem I’d fully embraced and tackled in full view. I remember one of my final days in the gym being ignored by one of my coaches. He wouldn’t even look at me. When I approached him, he snapped “Come back and talk to me when you’ve gained five pounds!” and walked away.

That hurt so much. And was rich, considering the other girls all had daily weigh-ins to ensure their weight remained artificially low. To their credit, my coaches (up to that point) had been nothing but supportive. They were well aware of my eating disordered days and never discussed diet, body composition, or weight with me. Another girl in the gym was falling into bulimia at the same time my intestinal issues were too severe to mask, but when vomit was found around the toilet it was pinned on me. Even though I’d never been bulimic.

Anorexia and bulimia are two entirely different disorders.

Yet everyone, save for my dietician, my grandmother, and my mother, had decided I was causing this; that I had relapsed back into anorexia and for whatever reason refused to admit it this time around.

After two years of clinging to life, an opportunity for relocation presented itself; My mother was offered a move to Calgary, and she took it. Given the lack of medical help available to me in Ontario, I opted to move with her, knowing the alternative was nothing short of death.

I faced many of the same barriers when first seeking treatment in Calgary. I’d yet to find a family doctor, and the only medical information at hand was the inaccurate report from Dr. K. My mother implored me to enter into the Calgary eating disorders program. At the very least, she thought, I’d get access to a doctor who could then address what was really going on.

So I went.

I went for assessments, meetings, an orientation, etc., but I refused to play their games. I was told the only way they’d look into my intestinal issues is if I agreed to an intensive in-patient stay, complete with daily therapy for a problem I no longer had.

I wouldn’t do it.

The final meeting with the team at the eating disorders treatment centre included my mother, and I was offered the chance to ‘prove’ my non-anorexic status by eating a chocolate bar. I laughed at the Kit-Kat so smugly being passed my way, and told the lead therapist, in no uncertain terms, to go fuck herself.

That was a long drive home. My mother went to bed, disgusted with me, with the medical system, with the whole experience.

I spent the night sobbing, trying to decide the least painful way to end my life by morning.

It was shortly after that incident that I connected with the man who would take my case, who’d become my family doctor and advocate, and ultimately, who’d save my life.

Let’s call him Dr. J.

Dr. J was the first medical professional to take me at my word with regards to the past mental health issues being, indeed, in the past. Time would tell, he argued, whether or not I was being truthful.

He quickly realized, I was.

Dr. J made it his mission to solve the medical puzzle at hand. It wasn’t all smooth sailing, however, and there were a few more instances of being written off as “the anorexic in denial” without so much as a basic examination.

But thanks to his unwavering commitment to my case and a keen interest in a good medical mystery, Dr. J built a team of specialists and surgeons who dealt with me as if I’d never had a history of anorexia; who evaluated and treated me as they would any other patient who presented with these symptoms, but who didn’t have that scarlet letter stamped on their medical chart.

Due to the lack of proper diagnosis/treatment for such an extended time, the damage to the intestine was extensive. Recovery would not only be a long one, but it was unclear as to what extent recovery could occur.

I had a segment of my large intestine removed (only one segment because it wasn’t clear I’d be able to survive a more extensive surgery) and an intestinal prolapse repaired. What remained of the large intestine was left intact, but disconnected from the small intestine at the ileocecal valve.

For the first time since 2002, I was entirely free of pain.

I was 58 pounds at that point, and it was determined my small intestine had lost the ability to function. I devoured obscene amounts of food to no avail. I could – and did – eat anything and everything, but my gut simply could not digest or absorb nutrients.

An intensive intestinal rehabilitation program was proposed as a last-ditch effort to restore the small gut’s function before I’d be resigned to a life on TPN, and, in the end, it proved successful. 18 months of round-the-clock, high-volume, high-caloric intake, in addition to a steady stream of complete meal replacement drinks, allowed the lining of the small intestine to regenerate and the gut to regain function — though at a less-than-normal capacity.

Next step was tackling the endocrine deficiencies and dealing with the fallout from the period of chronic malnutrition.

My mother remortgaged the house and I took out a $30,000 medical loan, allowing for all medications required as well as one treatment not covered by medicare (long story).

So, after two years of fighting the stigma assigned to me based on a battle from childhood to find a doctor who’d look beyond, followed by proper investigations and diagnoses, two intestinal surgeries and six years of intestinal and endocrinological treatments, I find myself where I am today.

That, being the final stretch of the treatment plan, preparing for one final surgery and planning for life after the completion of treatment.

I can only imagine where I’d be right now had I received prompt medical attention; had the ulcerative colitis not been allowed to get to the point of severity it did. It’s somewhat comforting to know the medical professionals I’ve dealt are now using my case to teach new doctors how not to handle people with a history of mental illness.

It’s nice to think that, in the future, someone will be spared the barriers to treatment that nearly cost me my life.

At least, I hope they will.