The Heart-Breaking Would You Rather

I don’t know if there is anyone out there who has not, at some point in their lives of idle chatter, engaged in a game of “would you rather”. These games vary greatly, from “would you rather sleep with this or that other person”, to “would you rather live through this or that other apocalyptic scenario”. As a teenager, watching my and my friends’ family members age and, for the first time in our lives, confronting death with a semblance of understanding that this will eventually happen to us, the most common form of “would you rather” that came up was one of much discussion and heartbreak.

If you are lucky enough to reach old age, would you rather die of a degenerative disease which steals your mind, or steals your body?

The perspectives that were brought to this discussion varied greatly, and with them were brought the terrible truths of what our elderly relatives were facing. I watched my grandfather die of Alzheimer’s disease, and I saw what it did to my grandmother. One of my classmates was watching his father degenerate with Parkinson’s, another’s aunt with MS, another’s grandmother with a type of violent Sundown Dementia. The discussions were long, sometimes heated, and always left everyone in a thoroughly depressed mood, but somehow we could not keep ourselves from prodding that sore spot as the discussion recommenced a few days later with fresh perspectives and thoughts.

The crux of the argument came down to this: would you rather know what is happening to you, or not? Of course the nuances of this are complicated: most people with dementia go through a terrible time of their lives when they realize that their mind is deserting them, though by the end they at least seem to be blissfully unaware. Diseases that steal the use of your body are sometimes accompanied by unendurable pain, sometimes not, and sometimes are accompanied by feelings of guilt as you know exactly how much of a burden you are on your family members and caretakers, but not being able to do anything about it.

I think it was these discussions that brought my meandering scientific journey to end up in the study of neurodegeneration and aging. It is not about “looking for the fountain of youth”, or the “secret to living forever”, as so many people blithely ask me when I tell them of the topic of my research. It is not so much about prolonging lifespan, but prolonging healthspan, which is so much more important to so many more people than a megalomaniacal wish to live forever. It is because there is no right, no obvious answer to that terrible game of “would you rather”. The fact is, both are terrible.

I cannot imagine the feelings of claustrophobic frustration that people with locked-in syndrome must go through. I cannot bear to think of the early stages of Alzheimer’s that my grandfather went through, that feeling of being so sure of your surroundings then watch them get snatched away from you as your lucidity kicks in for an instant, like living in a perpetual hallucination that you know will only get worse and eventually consume you. Even putting aside the immense costs to society and family of elderly care of such diseases, the suffering that they come with alone inspire me and make me want to contribute to researching ways to if not prevent them, at least mitigate the symptoms.

I sometimes get disdain for my chosen field. “Do we really need to have an even older population?” is one common question. “What about diseases that affect children/the world is too overpopulated anyway/what about global hunger” is another, as if we should all decide what is the single biggest tragedy in the world, all work towards fixing that, and fuck everything and everybody else. To me, I don’t see the suffering of the elderly (and often the not so elderly at all, if we want to consider ALS and MS as examples) as any less deserving of attention than the suffering of anybody else. I do not pretend to swoop in and be the one person to cure Alzheimer’s disease, that would be ridiculously self-important to the point of being Trumpian. But what does get me through the daily grind, and the long hours, and the experiments going sideways just when I’m under pressure is knowing that I am, in my teeny tiny way, contributing to a body of knowledge that will, and is every day, chipping persistently away at this boulder of a problem until there will be nothing left. That does not mean that I see the problem that I am working on as the most important thing in the world, and that everyone should stop what they’re doing to either join me or give me a pat on the back. It means that this is my way of contributing based on what I am good at and what I can do, with only the greatest respect for those who focus on other tasks and other problems to solve based on their talents and expertise.

Elephant in the Room Part IV: The Elephant Has Been Spotted

A few days ago, I posted about a woman who died in Italy of sepsis after miscarrying twins. Her family claimed that she died because the doctor on call was a conscientious objector, and refused to complete the abortion she needed to save her life because he could still detect a foetal heartbeat. The hospital denies the charges, but a manslaughter investigation is still underway to assess whether or not the family’s claims have merit.

While Italian law allows for conscientious objection only in the matter of the voluntary termination of a pregnancy, I pointed out that it should not be allowed under any circumstances, particularly in public hospitals. If performing an abortion goes against your moral values, I argued, you need to go into a different specialization or profession. Similarly, if you are a pacifist and owning or firing a gun goes against your moral code (and Italian law also permits conscientious objection to firearms), you cannot be a police officer. I pointed out that no one was really talking about the deep problems with conscientious objection in the medical field, and how our country has a two-fold problem of Catholic hospitals with emergency rooms, which can lead women needing emergency pregnancy-related care to be brought to those hospitals, and conscientious objectors being hired in non-Catholic public hospitals as well.

Well, the elephant in the room has been spotted at last. The controversy surrounding that poor woman’s death is sparking debate and outrage which is not dying down, and I am finally seeing articles addressing the problem of conscientious objection. A study has been conducted to investigate just how many conscientious objectors there are working in hospitals across the country, and the results are mind boggling.

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Elephant in the Room Part II: And It Happens In Italy

and I am deeply disgusted with my country.

Many of you will be familiar by now with the story of Savita, who died of sepsis in Ireland when she was miscarrying and medical staff refused to cure her due to the fact that they could still detect a foetal heartbeat. Her death understandably sparked worldwide outrage and a national debate, centered around the fact that it is still, to this day, illegal to obtain an abortion in Ireland.

Despite also being a predominantly Catholic country, Italy legalized abortion back in the 1970s. For the first three months, a woman can seek an abortion for whichever reason, and she can get the procedure done in a state hospital. After three months, abortion is legal for medical reasons. While on its face the law provides Italian women with more reproductive rights than in Ireland, it is not true that Catholicism has not left its mark upon it.

Italian law allows for doctors to be obiettori di coscienza, or conscientious objectors. This means that no doctor in Italy is forced to perform abortions contrary to their religious or moral beliefs. While most Italian states require doctors to register as conscientious objectors, thereby making sure that there is at least one doctor per hospital who will perform abortions, this regulation is not very well enforced and women in more conservative parts of the country can find themselves falling through the cracks.

The results, of course, are predictable.

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You’re Going To Make Me Rant About Privilege Again

Arguments from a privileged perspective are, unfortunately, an easy trap to fall into, and both sides of the political spectrum are afflicted with them. Your far right will often make ludicrous arguments from a white, cis hetero male perspective, we have all heard them and torn them apart many times. However it is not fair to deny that we have our own privileged kooks on the left as well. Anti-vaxxers, for instance, are often far to the left, and I have previously posted about how GMO-hate can also fall into this category. Now, I’ve come across another argument-from-privilege meme that is making my blood boil.

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Go fuck yourself, spiritual man.

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A Real Portrait of Cancer

Beth Whaanga is an Australian woman who, on her 32nd birthday, discovered that she had breast cancer. This is a story that many of you are familiar with and know what often needs to be done. She proceeded with a double mastectomy and a full hysterectomy.

Even beyond the fear and the pain of undergoing invasive surgery, this kind of thing is often double devastating to women because of our societal and cultural expectations of what makes a woman. It reminds me of that scene from Erin Brockovich, in which one of the women poisoned by the drinking water in her home asks: “Tell me, if you have no breasts, and no uterus, are you still technically a woman?”

This pressure on women to be defined by their anatomy makes breast and uterine cancer particularly emotionally devastating for many women around the world, often compounded by lighthearted breast cancer awareness campaigns like Save the Tatas, or Save Second Base. Beth Whaanga, on the other hand, wanted to spark a far more real discussion about breast cancer, as well as give courage to others who are going through a similar ordeal. Very bravely, in my opinion, she undressed, took pictures of her body and posted them to facebook.

Both through the link and below the fold you will see the pictures. If you are uncomfortable seeing scars, don’t continue.

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Cultural Differences: If You Expect It, You Get It

I came across this video on facebook today, and it reminded me of one of the first cultural differences I noticed as a child visiting the United States. It has to do with “kids menus” in restaurants, and how they are extremely unhealthy.

 

For most people, the fact that 97% of kid’s menus found in restaurants do not meet nutritional requirements will come as no surprise. Who really thinks that a diet of grilled cheese and chicken nuggets is enough to raise a healthy child? However, the counter argument to that is most people do not eat at restaurants every day. It’s supposed to be a treat, a once in a while type of thing, and so why not have a menu with things that kids most love to eat?

This post is not about the fact that kids menus are unhealthy. This post is about the expectation that children are picky eaters, and how that influences what they will and will not eat.

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First The Good News, Or The Bad News?

Ah Italy. Behind the times in so many ways. While you may be in the forefront when it comes to high-end fashion, the cultural fashions that sweep the privileged world are always late in arriving to your shores. You might think that, given the tardiness you would be more inclined to look them over and sort out the good ones from the bad, but sadly they all eventually seem to make it over.

In this case, I am referring to the anti-vaccination fad that has been spreading, and killing, ever since the notorious Andrew Wakefield paper linking autism to the MMR vaccine. While there were anti-vaxxers before then, that was when the idea really got put on (organic and gluten-free, I’m sure) steroids. That was 1998, but it has only been in the past few years that the movement really started to gain traction in Italy as well.

Italian culture is a very hypochondriac one, so the issue of people not getting their kids vaccinated was never really raised until now. Some vaccines are obligatory by law, others are “highly recommended” but can be obligatory in some schools, though no one really knew the difference or made a fuss about it. When my mother moved here she was not told which were absolutely obligatory and which she could get away with not giving me, she was simply told that kids in Italy had to get all their vaccinations and that’s that.

But as I said fads, even the dangerous ones, eventually make it over here as well. So, the bad news, or the good news first?

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Vegan Parenting and an Italian Controversy

I don’t think there is any way to post about this subject, and my thoughts on it, without getting into trouble in the comments. Oh well, here goes.

Recently, an member of the very conservative Forza Italia party proposed a law that would sentence parents to 1-2 years in jail for not providing a balanced diet to children under 16. As the article I found written in English phrases it:

Silvio Berlusconi’s Forza Italia party wants to see parents who feed children under 16 a vegan diet jailed for up to a year.

That sounds both hilarious, and a little extreme. So, I went in search of a more detailed article from Italian news outlets, and found a decent article on the subject in La Reppublica. I feel that a little clarification is needed before I comment on the topic.

First of all, the law does not specifically mention veganism. The wording of the proposal is as follows:

[la legge] rende penalmente perseguibile chi “impone o adotta nei confronti di un minore degli anni 16, sottoposto alla sua responsabilità genitoriale o a lui affidato per ragione di educazione, istruzione, cura, vigilanza o custodia, una dieta alimentare priva di elementi essenziali per la crescita sana ed equilibrata del minore stesso”

Translation: [the law would] render punishable by law those who “impose or adopt for a minor under 16, who is under their parental responsibility or to them entrusted for reasons of education, instruction, care, vigilance or custody, a diet lacking in essential nutrients for the healthy and balanced growth of that same minor”.

While the law itself does not refer to veganism in particular, but rather to any diet which would lead to malnourishment, it is clear that the politician in question has her sights set on veganism. When asked about it, she talks about “radicalized” parents who impose diets which are far too restrictive to the healthy growth and cognitive development of their children, and mentions the essential nutrients often lacking in a vegan diet as her prime example. While she has no objection to informed adults making their own decisions, she says, it is a different matter entirely when those decisions impact the health and safety of children.

This attitude also does not come out of the blue. Veganism is definitely on the rise in Italy, and with it there have been many children hospitalized for malnutrition. One pediatrician in Rome saw three babies hospitalized for severe B12 deficiency in the past year alone. A two year old in Belluno was hospitalized for severe malnutrition, including calcium and B12 deficiency. A three year old girl in Genova had to be resuscitated after she was hospitalized, once again, for a severe B12 deficiency. I personally know someone who’s child almost died from a B12 deficiency. Of course, veganism is not the only kind of diet that can lead to such a severe impact on the health of children, but it is certainly something that is causing a lot of talk in Italy, given that the vegan fad is such a new arrival to the country.

So, here’s what I think about it. I have a controversial statement to make on the topic. As hard as it may seem to accept, the fact of the matter is, veganism is not the ultimate healthy diet. I’ll say it again.

Veganism is not the healthiest diet for humans

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Bad Science Reporting BullShit-O-Meter… Activated!

Recently, a post about the anti-cancer effects of ginger was cropping up on my feed quite a bit, and it caught my attention. I was immediately inclined to call bullshit on the whole thing, not only because the source was Earth, We Are One, but the all-caps title STUDY SHOWS GINGER IS 10,000X STRONGER THAN CHEMO (ONLY KILLS CANCER CELLS) was telling of an alt-medicine crapfest in itself.

However, not all alternative medicine ideas are equal. Sometimes they spawn from complete garbage (homeopathy, I’m looking at you), while other times they are simply exaggerating and twisting a small grain of truth into something it’s not, and sometimes that small grain of truth can be interesting. So, where does this article fall in the scale of bad science reporting, I asked myself? I am nothing but diligent in these matters, so I looked into it.

Of course, unsurprisingly, the so called studies were not linked in the post, but rather they quoted davidwolfe.com as their source. Sigh, OK, let’s take a look at it. Before my screen was overcome by popups asking me to subscribe to this and that, I managed to glimpse a few titles on the homepage, including 6 Things You Need To Know If You’re Friends With A Leo, and Press THIS Point on Your Belly to Remove Pounds of Toxins From Your Colon. Oh dear, it’s one of those sites. This might be an interesting fountain of silliness for future posts, but for now I’m on a mission to find the article in question.After using the search engine to find the article, I can immediately see that EWAO blatantly plagiarized the entire thing, from the title to the images and the text, except this version of the article actually links to the studies! And they’re real papers! Score one for David Wolfe! Color me impressed.So, what do the studies actually say? [Read more…]

What Is The Harm Of The Placebo Effect?

An article posted by Cara Santa Maria about banning homeopathy for pets got me thinking about a recent conversation I had with my father about the placebo effect, specifically when it came to homeopathy. While it is well known in the scientific and skeptic community that homeopathy is garbage, and takes full advantage of the placebo effect and anti-modern medicine marketing for its success, my father took the stance that there is an inherent benefit of “prescribing” placebos to patients under certain conditions.

His reasoning was this: if you have a patient that is suffering from insomnia, which is not due to a hormonal imbalance but rather due to an unaddressed anxiety or stress, and a sugar pill helps that patient to sleep at night, isn’t that better for their health than taking potent sleeping aids? Similarly, if a sugar pill helps someone with a generalized anxiety disorder feel more relaxed, or relieve a tension headache, or help a hypochondriac wait out a common cold they are convinced is deadly pneumonia, isn’t that better than giving that person the pharmaceutical counterpart to the homeopathic remedy? While he agrees that placebos are harmful in the context of an ulcer, or cancer, or other conditions in which a patient thinking they feel better will only make them wait for proper treatment and worsen their condition, he posited that using placebos in certain contexts could do a patient far more good than going straight for the heavy duty drugs. After all, sugar pills and drops of distilled water, while being useless cures also carry no side effects, so if plain water helps the condition, why expose the patients to the inevitable side effects, however minor, of drugs with real active ingredients?

While this reasoning has some merit on it’s face, it also ignores some serious downsides to this approach, especially when it comes to homeopathy.

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