Old Meets New

They could hear the mob coming up the road.

Conrad looked at his wife Joyce and seeing the fear in her eyes, said

“We have to go.”

The wagon was already packed. Their four children sitting in the back, oblivious to what was going on.

They stepped out the back door, climbed up on the bench seat in the front, snapped the reins and let the horses take them away at a trot.

They didn’t look back.

If they had, they would have seen smoke… then flames… their home, their barn, and their crops… all set on fire.

Had they stayed, they would have been captured, tied up with coarse ropes and marched to the church in town.

They would have faced a tribunal… and in all likelihood they would have been found guilty of heresy … then, the following day at noon… they would have been burned at the stake.

This is Europe in the early 1700s.

Conrad, Joyce, and thousands of people like them, were run out of town, or killed in brutal fashion for their sins.

And that sin was believing people should be baptised as adults, rather than when they are children. Yah that’s it.

You see Conrad and Joyce, were Amish.

The lucky ones. The ones that got away, moved to new towns, changed their names and practiced their religion in secret.

Conrad, Joyce, and their children were part of a group of eighty that sailed across the Atlantic Ocean, and settled in what is now Lancaster, Pennsylvania. A place where they hoped they would be able to live in peace.

The luxuriant emerald green landscapes stretching before our eyes are in Lancaster county in south-eastern Pennsylvania.

That’s from a 1959 educational film called “The Old Order Amish.”

Some of these fields have been under constant cultivation since the early 1700s when groups of refugees from European oppression came here at the bidding of William Penn to take up their lives anew.

They go by a lot of different names –

The Pennsylvania Dutch

The Plain People

But for our purposes we’ll just call them Amish

On the farms of this idyllic setting live close to eight thousand of the highly idealistic Old Order Amish who choose to withdraw from the world and its distractions so as to dedicate their lives to resolutely following the bible and the plow.

The people of this community avoid the use of technology. They use horses rather than a tractor and they sew their own clothes.

The simply furnished Amish home is as far removed from the outside world as is practical. No electric wires or gas lines connect it to the world. Radios, television sets, and other media have no place in the home.

Their focus is on faith, farming, and family.

Just a few years ago, a young woman named Bridget – a descendent of one of those original 80 founders – became a new mom.

The baby was born in the family home as is the custom, and given the name Eliza. Shortly after her first feeding, Bridget lay little Eliza down for a nap.

An hour later she went to lift her out of her crib, and found she was stiff and unmoving.

They rushed her to the hospital where she was diagnosed as having had a stroke – causing irreversible damage to her brain.

Today, at four years old, Eliza is mentally alert. She can think just like any other kid. But she can’t speak, she can’t use her hands, and she gets all of her food through a tube in her stomach.

Eliza’s stroke was caused by a genetic disease that – despite it’s devastating consequences – has this absurd, almost comedic sounding name: “Maple Syrup Urine Disease.” That’s what it’s called, because that’s one of the symptoms – sweet smelling urine.

So now this same community that escaped persecution and death in Europe in the 18^th century – is facing a new threat: a rare genetic disorder.

Maple Syrup Urine Disease, or M.S.U.D., is a condition where your body lacks the enzymes to break down certain amino acids.

Those amino acids build up in your system and start poisoning your body, effectively becoming neurotoxins.

To make matters worse, one of the specific amino acids that builds up, Leucine, is in breastmilk. That means it’s crucial to identify infants with this condition in their first hours.

Even before their first meal.

Otherwise breastfeeding your newborn child is effectively feeding them poison!

Now if you haven’t heard about M.S.U.D., I’m not surprised. It’s very rare: In the US, on average, it affects roughly one out of every 180,000 births.

And that’s because it’s a recessive genetic disorder. A child is only at risk if both their parents carry it – and even then, they only have a one in four chance of getting the disease.

But the odds are very different for the people living in Lancaster.

Amish communities encourage marrying within the community. So, a gene pool that started with 80 founders in the 1730s and has grown to 65,000… just hasn’t had a lot of opportunity to diversify. That means that if you were born in Lancaster, your odds of marrying and having children with someone who shares this rare but deadly characteristic is actually quite high.

If you were born in Lancaster, the odds that your child will be born with this disorder aren’t one out of every 180,000. They’re one-in-100.

The Amish community – once they understood what was happening – reacted, as you might expect, as a unified community.

They held an old-fashioned barn-raising… but they didn’t raise a barn – they raised  “The Clinic for Special Children.”

It was staffed and equipped with the best diagnostic tools available.

Today, the umbilical cord blood from every newborn in the community is tested immediately and if a child has MSUD, they get a special formula – free of Leucine – And with careful diet management, those babies can expect to live full, healthy lives.

Before the clinic, 60 percent of infants born with that disease died.

Since its construction, the clinic has treated more than 110 children and brought the death rate to zero.

I want to clear something up – a lot of people think Amish communities shunning technology is just this unthinking legacy of the past – but that’s unfair. It’s a choice. Many Amish people believe that technology separates people… and they argue that shunning technology is a way to keep a community tight.

For example, if you have a car, it’s not a big deal to live 30 miles from your mom. But deprived of that technology, that half-hour drive becomes like a four hour journey by horse. You’ll probably choose to live closer together.

Or, think of the last time the power went out at your house. The first thing that happened was everybody gathered in one room and started talking, right? Well, If none of you had smartphones or computers, don’t you think those conversations might happen a little more often?

So that’s why screening cord blood is allowed in Amish society, despite being far more high-tech than a car. It’s allowed because it’s in keeping with their values.

But what if we could prevent it altogether? And not just Maple Syrup Urine Disease. There are a bunch of other genetic diseases that are more common in Amish communities, for exactly the same reason.

Not everyone in those communities is a carrier. So what if you had a way to make sure that when people were choosing a partner, they had information about their own genetics that could inform their decision.

Let’s say hypothetically you’ve got two teenagers who are getting a little interested in each other, and let’s say they’re both positive for that disease. Well, then the community can step in and tell them not to date, not to get married, not to have kids.

And yes, I hear you yelling at me. Who are you to get between two teenagers who love each other. Haven’t you read Romeo and Juliet? You’re being terrible. But we have to acknowledge our cultural bias. Most people in Western societies see arranged marriage, or frankly any parental interventions, as totally inappropriate.

But in Amish communities, those kinds of interventions are the norm. That’s how it works already.

Not forced marriages per se… but it’s totally normal – and expected – for parents to introduce their kids to people that they feel would be good matches for them, and then supervise the courtship.

It’s not seen as meddling, it’s viewed as an essential part of building a community.

So, what if those Amish communities could be empowered with modern knowledge from genetic screening? Then, parents could guide their children away from partnerships where both people carry a recessive trait.

Would that scenario combine the best of both worlds to find a solution that works for that specific community? Well, the answer to that is really a choice for the Amish community to make itself.

I’m Dan Riskin – and this is “Inside the Breakthrough – How Science Comes to Life” – an original podcast by SciMar.

What I do here is share unusual stories about science and history, then use those to shed light on modern medical research.

I do that with the help of a few old newsreels:

Where Britain’s finest scientists like their opposite numbers all over the world work in the hope that their achievements will hasten man’s progress and not destroy it.

…and a few special guests. In this episode, it’s an expert in a concept called “two-eyed seeing.”

It’s very hard to do, but it’s possible so long as you remain grounded and you’re connected with those folks who can help you filter through those difficult times.

And of course that would apply in the case of health and wellbeing in this case as it relates to diabetes.

And as she hinted there… we’re going to bring this around to the research SciMar is doing to try to eradicate type 2 diabetes for all communities, all around the world.

This is episode 7 – Old Meets New.

Our next story starts in 1845 – in a harbour on the coast of England.

A gentle fog rolls into the bay just as a pair of ships pulls up their anchors and raises their sails.

A crowd of people, including the wives and girlfriends of many of the men on board, is gathered on the shore for a glimpse of the small flotilla setting off to make history.

The ships are named HMS Erebus and HMS Terror.

Never before has there been a pair of ships so well prepared, or so well crewed.

Their thick hulls are built to withstand the crushing ice of the Arctic winter. Their bows are reinforced with iron.

On board: warm clothing, canned food and dried food – enough to last for at least three years.

The captains of each ship are well seasoned. They’ve both completed expeditions to Antarctica before. Their crews are handpicked. The best of the best.

And in command of the whole thing – is a man who has twice led successful Arctic expeditions… A man that explored and mapped Australia as a teenager… a naval veteran of the war of 1812… one of Britain’s finest seagoing leaders of all time…. Sir John Franklin.

In May of 1845 the British Admiralty commissioned the 58^th and hopefully final charting of the Northwest Passage.

That’s from an old film called “Buried in Ice” – and yes, that name will tell you that this voyage does not end well … but right now, as they leave England, everything is great. They are Britain’s finest explorers and they are off to chart the “Northwest Passage.”

For over 300 years European explorers conceived the passage to be a route to the rich markets of the Orient.

You see, this was seventy years before the Panama Canal was cut into Central America.  Back then, sailing from the Atlantic to the Pacific meant going “the long way around” — south… across the equator… all the way around the tip of South America, around Cape Horn…and back up the other side.

It was a long and hazardous journey.

If a navigation route across the top of North America could be mapped… the world would never be the same.

By the 1840s the push to complete the charting of the North-West Passage had become a national obsession.

Most of the route was already known … it had been explored from both ends… Franklin’s job was to map out the final 300 miles in the middle.

On July 26^th, 1845 they passed within sight of a whaling ship in Baffin Bay and waved to the other crew.

And for the 129 men on Franklin’s two ships… that was the last time anyone ever saw them alive.

Or was it?

The expedition had been funded by the Royal Navy, and after three years without a word, they got a little worried.

They had a ship that was surveying the west coast of North America, so they instructed them to head north to the Bering Strait and search the western part of the Arctic.

They searched…and they found nothing.

Then the British sent HMS Investigator – (which is a perfect name) – to search the eastern part of the Arctic Ocean. It never returned.

A land expedition was launched – a team of men trekked across the north shore of the North American mainland hoping to find a spot where the ship had come ashore, but there was no sign of Sir John Franklin, or his men, or his ships.

The British Government offered a 20-thousand pound reward to anyone who could find and deliver assistance to the expedition. But it was never claimed.

In all, eight British navy ships were sent… The American Navy even put aside their hard feelings from the recent war of 1812 to help search. There were even some privately funded expeditions… but … none of them found anything..

Finally – in 1850 – five years after that ill-fated expedition left England – a British ship discovered the remains of a camp on Beechey Island. They figured out that this was the spot that Franklin spent his first winter in 1845 to 1846.

And that… was it.

In 1854 – The London Times – the most esteemed British newspaper of the day wrote: “To continue the search would be wasting time upon a search for dead men’s bones.” I hope you get somebody better to read that.

“To continue the search would be wasting time upon a search for dead men’s bones.”

I hope you get someone better to read that…

“To continue the search would be wasting time upon a search for dead men’s bones.”

Thank you. Much better.

But what if that whaling ship in Baffin Bay was not actually the last time anyone saw Franklin’s crew?

What if other people had seen the Terror and the Erebus – but no one had asked them… because … well because they weren’t European.

Enter Louie Kamookak.

Louie is a curator of old stories. And in Inuit communities, storytelling plays a crucial role. For thousands of years, there were no written history books or libraries… the history of what people did and what they saw was passed down orally. And that tradition continues today.

A lot of the stories Louie heard and later retold, were about the Franklin Expedition. These were tales told to him by his grandparents and his great grandparents… about what their grandparents had seen.

There were descriptions of two wooden ships with dozens of white men on board… trapped in the ice.

There was the story his great grandmother told, about when she was six years old and found a fork. There were initials engraved on that fork. J. F.

And there was also the story of his grandfather, who stumbled across a skeleton in 1931 – the clothing and style of the burial told him it was European – most likely a member of the failed expedition.

Now here’s a thing about oral histories…. We’ve all played that game broken telephone – You whisper something to the person beside you and it goes around the circle and by the time it comes back to you the words are all changed, it’s totally different.

Well, the Europeans and later the Canadians who were leading the search, have also played that game. So they were skeptical of any local knowledge that came from oral traditions. After all these were tales that had been retold for a century and a half. How accurate could they possibly be?

But in 2008, Louie Kamookak presented a small group of artifacts – buttons, silverware, and bones – things that were unquestionably tied to the Franklin expedition… and that got all those skeptical researchers listening.

And make no mistake, those trinkets, they were clues, but alone they were not enough. The really valuable information was hidden in those stories.

Louie Kamookak explained that oral histories in Inuit communities don’t suffer from the broken telephone effect… he explained that in his culture, forged out of long dark winter nights huddled together… storytelling is quantifiably different. Stories are retold word for word even after more than a century.

And if you take those ancient tales as factual records, they don’t just tell you what happened. They tell you exactly where to search.

The Canadian government, Parks Canada, the Royal Canadian Geographic Society, and a bunch of private supporters were all excited enough by this development to launch a large-scale, well-funded search team.

They had a massive coast guard ship to serve as their basecamp.

They had a side-scan sonar device towed behind a boat to paint a picture of the sea floor.

And they had an ROV – a remotely operated vehicle – with a high-definition camera they could send down to investigate anything interesting they might find.

They spent weeks criss-crossing a search grid in the water just west of King William Island.

But, like all those searches before, they came up with nothing.

Now, it was early September… up North, the days get very short and the nights get very cold. The searchers, despite all their cutting-edge tech, were running out of time before they would have to shut down the search and head south for the winter…. Then, on a routine sonar pass they saw the unmistakable image of a ship resting in just 35 feet of water.

Divers jumped in and brought up the ship’s bell. 160 years of growth wiped away revealing the name: HMS Erebus.

The Indigenous people of the far north had known the rough location of the ship for generations.

The government sponsored search teams had sonar, satellite imagery, and underwater cameras for decades.

But no one found the ships until those two groups worked together.

Solving Maple Syrup Urine Disease in the Amish community required cutting edge DNA testing… but only worked when it was integrated into traditional cultural practices within that community.

The recovery of Franklin’s ships required side-scanning sonar, and remote controlled rovers … and the knowledge stored in oral histories.

That phenomenon, where the traditional knowledge and the new knowledge complement one another, has a name: “Two Eyed Seeing.”

This is a Mi’kmaw saying, it embraces the ideas of learning to see from one eye with the strengths of Indigenous knowledges and ways of knowing and from the other eye with the strengths of mainstream knowledge.

That is Jennefer Nepinak, the associate vice-president for Indigenous engagement at the University of Winnipeg.

I’m Anishinabe. I’m from Treaty 4 Territory, Pine Creek First Nation. And I’m anishinaabemowin. That’s my traditional name which translates into Thunder Wind and of course my English name being Jennefer Nepinak.

Jennefer was raised by her grandparents in a very traditional environment but also has a law degree, and now holds an influential position at a large university – so she very definitely knows about two-eyed seeing. .

I think many of us find ourselves in that place where we have become people who are utilizing this process of two-eyed seeing or walking in two different worlds, as we say sometimes, and trying to learn how to complement those different world views so that you can sustain and build that good life.

Living “The Good Life” is at the heart of how many First Nations communities approach illness, disease, and medical care.

It’s called mino-pimatisiwin. It translates loosely into what we say is the good life. So the good life is whatever that might be for you. It entails success and happiness and livelihood and thriving. It doesn’t necessarily speak to success in the terms that we understand within the Western ways of knowing and thinking. It is more closely associated to your overall wellbeing and how you connect and relate in the community and how you connect and relate to not just the people but the land and the animals around you, so that you’re living a life of interconnectedness in a good way that’s healthy and that ensures sustainability in all areas.

A great example of that holistic, collective approach to healthcare can be seen in the way mental health issues are addressed.

I know many folks go for counseling and go see a therapist. More often than not you’re going to be put into a small room that feels very clinical and it’s a very direct one-on-one conversation with the professional or the expert in the area. Whereas our approach there’s children around, there’s elders around and there’s many people to talk to, and there’s many people to share with and you continue to build on that as you go forward. So you can see there’s quite a difference in terms of the particular approach in this case of providing therapy to a person for mental wellness.

Jennefer suggests a similar “community-wide” approach would be successful in treating type 2 diabetes.

First Nation people are considered among the most at risk populations for developing diabetes and related complications in Canada.

There are a lot of factors behind that…  including housing insecurity, changes to traditional diets, the cost of healthy foods, access to medical care, and other legacies of institutional racism.… All that complexity makes solutions hard to find.

First and foremost, Indigenous First Nation people need to be involved in the conversation at the base level. I’ve often said this in any work that I do, we know what’s best for us. We know what works for us. We just need our voices heard. We need safe, appropriate, and cultural spaces to be honored in order to have that dialogue and those conversations in a good way.

A number of First Nations communities — including the Nisichawayasihk Cree Nation in Manitoba — are investors in SciMar … and since they have equity in the company, they play an important role in directing how the company engages with indigenous communities.”

That means they can establish the framework to allow this breakthrough science to have real impact in their communities.

SciMar is currently in clinical trials to better define the relationships among diet, the hormone hepatalin, and blood sugar levels.

A large part of those studies is focused on First Nations communities, a group of people that historically have been excluded from that kind of research. But SciMar has decided that since that community is one of the most heavily impacted… they need to be a central part of the solution. And fundamentally, that’s an application of two-eyed seeing.

We need to figure out how to make this better, so that we can all move forward and ensure a better future for all our children.

So that’s it for our look at the combination of traditional thinking and modern technology…

I’m Dan Riskin. Thanks for joining me on “Inside the Breakthrough – How Science Comes to Life.”

One last thing …

Two years after HMS Erebus was found – a similar approach was used to locate HMS Terror.

And that leaves just one major site left to be discovered… the burial site of Sir John Franklin himself.

There is documentation by the crew of Erebus explaining that Franklin himself died quite early in the expedition – 1847… but his final resting place isn’t detailed.

But, there are oral histories that describe the white men burying a great chief under the ground, under a pile of stones. Louie Kamookak says this indicates Franklin is in a vault on King William Island.

Now, it’s quite possible we’ll never find him, but my guess is, if we do, it’ll only happen because we used two eyes to look for him.