The submissions for 2020 (which came from as far away as Doha, Qatar) dove deep into the meaning of place to explore literal, fictional, and metaphorical geographies. Set in locations as different as Oceti Sakowin Camp, Standing Rock, and the lingerie department in Walmart, each poem demonstrated the power of place to anchor us in a shared conversation of what it means to be alive today.

This year’s winning poem, selected by the Zócalo editorial staff, won us over because of the way the poet’s distinctive voice guides us through the familiar scenery of the Southwestern U.S. The poem is a celebration of a person’s girlhood, and how it is shaped by such forces as family, religion, heritage, and location.

We’re thrilled to announce the Ninth Annual $500 Zócalo Public Square Poetry Prize goes to Jai Hamid Bashir. Her winning poem, “Little Bones,” combines specific places, such as a payphone in a gas station, with universal themes, such as childhood and growing up, the natural world, and family.

“Bashir’s work is beautiful, particularly in negotiating dichotomies—inner and external experiences, languages and landscapes, and feelings versus walking around in the world as a person,” says Zócalo poetry editor, Colette LaBouff.

Born to Pakistani-American immigrant artists, Bashir was raised in the Southwest and has spent many years advocating for climate justice and land conservation. A graduate of the Environmental Humanities program at the University of Utah, she is currently an MFA candidate at Columbia University in the City of New York. The recipient of the Linda Corrente Memorial Prize at Columbia University and an Academy of American Poet’s University Prize, she has been published by The American Poetry Review, Palette Poetry, The Cortland Review, The Margins, Sierra Magazine, The Academy of American Poets, and others.

Bashir will deliver a public reading of her poem during Zócalo’s 10th annual Book Prize Lecture, which will be streamed online on May 20 at 5 PM PDT. Her poem “Little Bones” is below, followed by a conversation with Zócalo associate editor, Jackie Mansky.

Little Bones

In a chlorinated morning. White, wet noise
is everywhere, so it is endless. After the pool, we echo
for the gas station attendant to use the phone,

Salam. Ma don’t worry. In song of bleach and sun,
we spent an afternoon earnest in the creation
of nests woven from tall grass, netted wrappers
from lunch apples. From palm—to—palm

passing a dying field mouse with the slow
understanding of boudins sharing a spring
in the desert. There was love moving us forward,

interveled like pangs before birth, asking us
to breathe in certain ways. We took it home
and fed it formula with an old baby dropper

in the backyard, until Ma called our names
before the hard vesper air of sunset, before
salat, we set the unsaved animal in the shade

of our family tree—lightheaded in our own
untold plans for eternity.

The post Jai Hamid Bashir Wins Zócalo’s Ninth Annual Poetry Prize appeared first on Zócalo Public Square.

In the last quarter of the 19th century, Mormons, under immense pressure from local and federal authorities, jettisoned their utopian separatism in favor of monogamy, market capitalism, public schools, national political parties, and military service. The question is, how can any human institution—much less a religion that historian Martin Marty has called the 19th century’s “most despised large group”—change so much so quickly?

The answer lies in understanding how Mormons determined that a pact with America was not a deal with the devil.

It also lies in American universities. In the same period that animosity between Mormons and non-Mormons reached fever pitch (the two decades between the death of Brigham Young in 1877 and Utah’s admission into the Union as the 45th state in 1896), a rising, influential generation of Mormons began attending the nation’s universities. On those campuses, Mormons enjoyed a rare, revivifying freedom from both outside aggression and ecclesiastical oversight. For them, the realm of American higher education was one of genuine dignity, hospitality, and meritocracy; it was a liminal, quasi-sacred space where they would undergo a radical transformation of consciousness and identity.

As a result, a generation of Mormon leaders developed an enduring devotion to non-Mormons’ institutions, deference to non-Mormons’ expertise, and respect for non-Mormons’ wisdom. These extra-ecclesial loyalties would dismantle the ideological framework of Mormon separatism and pave the way for Mormons’ voluntary re-immersion into the mainstream of American life.

It was Brigham Young himself who in the 1860s and ’70s authorized the first wave of Mormon academic migration to American institutions of higher education—like the University of Michigan, the Woman’s Medical College of Philadelphia, and West Point. His hope was that a few exemplary Latter-day Saints could secure professional training in law, medicine, and engineering that would help reinforce Mormon independence.

Students, however, began harboring their own diverse ambitions, and their experiences left them ambivalent at best about Mormon independence. As law students at the University of Michigan, for example, Mormons James Henry Moyle and Henry Rolapp wrote home about how they relished the opportunity to wrangle with non-Mormon classmates over Utah’s bid for statehood and the church’s legal status. They earned the clear, abiding respect of their peers not by proselytizing but by engaging them in rational discussion and debate about law and politics, leaving matters of faith off the table.

It was a rehearsal for, and a path to, American citizenship. In correspondence published in 1883 for Mormons in rural, southern Idaho, Rolapp wrote, “We have had quite [a] severe time in our class regarding our religion, but after we determinedly let them understand, that while we were not on a preaching mission, we were nevertheless proud of our religion, and could not be converted by ridicule—they let us alone.” Non-Mormons did more than leave them alone. They would support Moyle in his bid for the junior class presidency and elect Rolapp to the law department’s Supreme Court. For downcast Saints at home, Rolapp exulted, “we have held our own in spite of coming from Utah.”

Other Saints had similarly exhilarating academic experiences, which official church periodicals celebrated and disseminated for audiences delighted to know that the church’s best and brightest could succeed in the proving grounds of American academia. Each student’s dispatch introduced a distant, prestigious school—Harvard, MIT, Cornell, Michigan, the U.S. Naval Academy, even the art schools of Paris—to Mormon youth. The feature articles contained large photographs and ample descriptions of each school’s distinctive strengths, religious milieu, entrance requirements, daily routine, social life, and insider language like “quiz” and “flunk.” The students thus assumed authority as culturally bilingual diplomats who allowed the faithful at home to experience, vicariously, the thrill of being welcome in America.

Richard Lyman, writing from Ann Arbor, bore some of the most ebullient testimony. He described the University of Michigan’s campus and surrounding town as “a perfect little garden of Eden.” He had arrived with fear and trembling, because Mormons tended to “go out into the world feeling that in some degree, at least, we shall be curiosities to people.” Anxiety nearly overcame him when he introduced himself to the university’s president, James B. Angell. Carefully examining Lyman’s credentials, Angell assured him, “I am very glad to see you. We have had a great many students from your state, and among them we have found only good workers.” Lyman’s relief was inexpressible.

Also from Ann Arbor, the Mormon medical student Julia MacDonald Place wrote that the University of Michigan possessed a redemptive power that lifted her to heights of romantic eloquence. “Here is one place in the world,” she enthused in her correspondence to young Mormon women, “where money and position are of little avail, unless coupled with ability, and conscientious application to study … So may it ever be, thou queen of western universities. Be ever as now, the friend and helper of the poor and struggling student, who but for such aid must needs sink beneath his load of poverty, and the frowns of those more fortunate than himself.”

John A. Widtsoe, who graduated from Harvard in 1894, became of one the first Mormons to earn a PhD. Used by permission, Utah State Historical Society, all rights reserved.

Likewise, the first generation of Mormon students at Harvard luxuriated in the company of the university’s renowned faculty and student body. Reflecting years later on his arrival in Cambridge in 1891, John A. Widtsoe—who became one of the first Mormons to earn a Ph.D., president of the University of Utah, and a high-ranking church authority—enthused, “History, tradition, science, books—the dream had come true! My prayers had been heard. Who cared for the past, in full view of a glorious future!”

Harvard’s famed president, Charles Eliot, had intentionally created this sort of environment for his students. He exalted their freedom by promoting unfettered inquiry, making chapel attendance voluntary, and implementing an elective system that allowed students tremendous power to determine their courses of study. Widtsoe and his Mormon companions revered him. Widtsoe recalled, “In my generation he was easily the foremost citizen of America. Such men as he have the power to shape the world, and always for good.”

Ordinary Americans had no idea that a small cadre of Mormons was enjoying such lavish hospitality at Harvard. They found out in 1892, when the personal connections that Mormons had established with Charles Eliot led him to visit Salt Lake City. Before a crowd of 7,000 Mormons and non-Mormons in the Salt Lake Tabernacle, Eliot delivered a speech on one of his favorite topics, religious liberty. He expressed admiration for the Mormons, who, he said, resembled the early Puritans in their willingness to endure hardship and travel great distances in pursuit of a religious ideal.

But reports of the speech drew a backlash. Non-Mormons in Salt Lake City and throughout the nation found Eliot’s comparison intolerable, even traitorous. Eliot only added to the storm of controversy when he acknowledged that there was indeed a “colony” of Mormon students at Harvard.

The aftermath of Eliot’s speech illustrated how badly Mormons wanted to be seen as fully American, and how far most of the country still was from seeing them that way. Mormons rejoiced when President Eliot continued to defend them in the face of public criticism. “They live together,” Eliot conceded, “but they are not colonists in the sense of propagating Mormon doctrines or endeavoring to secure proselytes. They are good students, but do not differ greatly from other young men in their habits and customs.” Mormons savored the soul-stirring respect.

Other leading educators beat a path to Utah in the 1890s. The ambitious and idealistic head of the nascent Brigham Young Academy (later BYU), Benjamin Cluff, who had spent years at the University of Michigan, inaugurated a series of summer schools that brought the church, and Utah, into close communion with academic royalty. Guest lecturers included Col. Francis Parker of the Cook County Normal School in Chicago (1892), James Baldwin of the University of Texas (1893), and Burke Hinsdale of the University of Michigan (1894). Hundreds of Mormon and non-Mormon teachers attended the summer schools to hear lectures on the latest methods in education and psychology. John C. Swenson, a member of the Brigham Young Academy faculty who had never set foot outside Utah, recalled that the event fueled his desire to pursue university training in pedagogy and psychology at the glittering new Stanford University, starting in 1894.

As a result, by the dawn of Utah’s statehood, university-trained Mormon students possessed a new status and authority perhaps best exemplified in the career of Martha Hughes Cannon, MD. In 1896, Cannon became the first American woman to serve in a state senate—defeating her polygamist husband, Angus, in the election. She held three degrees from outside Utah, all earned in the early 1880s: a bachelor’s in medicine from Penn, a second bachelor’s from Philadelphia’s National School of Elocution and Oratory, and her MD from the University of Michigan. In the mid-1880s, during the federal raid on Utah polygamists, she had gone into exile in Europe, pregnant, to help Angus avoid arrest. There, she had visited training schools for nurses, and she had opened her own training school in Salt Lake City in 1889, before entering politics.

Such resilience and success made the 1890s heady times for the young scholars of the church. From Stanford, John C. Swenson wrote to Benjamin Cluff that with statehood secured, there was no telling “what we cannot do.”

Celebration of the students’ success would forestall a resurgent Mormon anti-intellectualism until the early 20th century, when conservative members of the church’s hierarchy, even some highly educated ones, began to fear that Mormon scholars’ respect for “the theories of men” had gone too far. They recast students’ enthusiasm as arrogance, their diplomacy as treason. As education turned into the main battleground in the 20th-century war to define Mormon identity, patriarchal scrutiny would often make Mormon scholars rebel or cower.

In the tumultuous late 19th century, however, Mormons needed their intellectuals—and American universities—to show them that becoming American would be neither humiliating nor irrational.

The post How Attending Elite Universities Helped Mormons Enter the Mainstream  appeared first on Zócalo Public Square.

I have annual passes to both the U.S. and the California Parks and Recreational Areas. So when someone asks what we need in terms of parks, my visceral answer is always: More! But others view the National Monument and National Park systems differently. Right now, the Trump administration is re-evaluating them with an eye towards shrinking some and opening up others to mining and development.

The economist in me wants to ask: What are the trade-offs of making such changes in our parks? And how are such changes valued?

Let’s start by acknowledging there is always a trade-off between economic activity and the environment. Everything we do—from sheltering and feeding ourselves, to going to movies and ballgames—changes the natural environment around us. And this is not new. Pre-Columbian hunter-gatherers altered the environment as they burned Great Plains grasses in their quest for buffalo burgers.

What are the costs of such alteration? For a long time, planners have sought to ascertain the value of urban open space. A recent study by Harvard lecturer Linda Bilmes and Colorado State University professor John Loomis tried to estimate the value of the National Park Service system. It is a big number, $92 billion. But even then, they admit that many aspects of the park system are undervalued because putting any price on them would be speculative at best.

Among these difficult-to-price aspects are the health and psychological benefits to those who use the parks—and to those who don’t use the parks, but who benefit from changed behavior by those who do. Their analysis also does not consider the opportunity cost of the parks—in other words the money that might be made were they not parks, but privatized for housing, mining, logging, or commercialized recreation.

The Trump administration’s current evaluation is focused on those parks that are designated as National Monuments under the Antiquities Act of 1906. While there are huge challenges in conducting a cost-benefit analysis of the National Monuments, it is still a worthwhile exercise to think about the values that can be pinned down.

Let’s begin with an easy example. The Statue of Liberty is a National Monument. It sits in New York Harbor on Liberty Island, prime real estate. In 2016 there were over 4.5 million visitors. They paid about $27 each to visit, which includes the boat ride to and from, and admission tickets to all or part of the monument. If we compare this to Manhattan skyscrapers that have an average age of over 60 years, then over the same amount of time visitors will have spent more than $7 billion at the monument.

Again, we don’t count those who benefit because others have been inspired by their visit to the Statue of Liberty, nor the value of connecting us to our heritage. It is undeniable that these are significant.

On the road to Bears Ears. Photo courtesy of Wikimedia Commons.

An alternative to the statue would be a skyscraper. The island would be prime real estate for building exclusive condos with views of the city and the harbor. The value would be diminished by the fact that domestic and maintenance workers would have to be paid more to get over to the island, and that access to the city would require a boat ride. So perhaps the comparable development is the Kushner family’s 666 Fifth Avenue office tower, another prime property.

The Kushners paid $1.8 billion for it, and The New York Times reports that they expect to spend $3.3 billion to renovate it. When you add this up—$5.1 billion—it is clear that the Statue of Liberty Monument (with a value of $7 billion-plus) is worth more than the alternative condo skyscraper occupying the same land.

And this is just the pure economic cost-benefit analysis. It leaves out the non-pecuniary value of being inspired by Lady Liberty, of connecting us to our heritage, and of reminding Americans that we were all once immigrants yearning to breathe free.

So it’s clear why no one, as far as I know, is contemplating selling or leasing parts or all of Liberty Island. But what about Bears Ears National Monument, the first target of Interior Secretary Ryan Zinke’s effort to shrink national monuments and open them up for development?

I’m betting that, at least until recently, you never had heard of it. Bears Ears is in a remote part of southern Utah.

But as an example, Bears Ears is instructive—and the economics are a bit more complicated. First of all, Bears Ears, like many monuments, is free to visit. So we don’t have admissions revenue to look at. Plus, the remoteness of the park means it will not have the same level of visitor traffic as the Statue of Liberty National Monument. Of course, luxury condos are not an alternative in such a remote place. But you can make the case that mining is an alternative use.

Now let’s consider the full value of Bears Ears. It spans an area with a fossil record from the age of the dinosaurs, one of the most complete records we have. The value in studying this record is that we may obtain a better understanding of the fossils from this time spanning the Triassic and Jurassic periods. Also, Bears Ears is home to more than 1,000 archeological sites dating from when early Native Americans lived in the area. This civilization vanished and new knowledge on how climactic changes seemed to have decimated their civilization is going to be useful for our grandchildren (or maybe even ourselves). The monument also has other values—to the visitors who make the trek there, and to Native Americans who still live in the area and have a spiritual and heritage connection to many parts of it.

What are we giving up by protecting this potentially useful historical, cultural, and scientific research site? Uranium. The Daneros Mine in Red Canyon is an existing uranium mining operation in the Bears Ears area that was purposely left out of the monument. But the monument effectively prevents further exploration and mining inside its boundary.

Here is the context. Uranium prices have been falling since they peaked in 2007, and economics teaches us that this happens when demand falls or supply increases. So if other parts of Bears Ears were not great places to mine before the monument was declared, they certainly are not now.

The counter to that point is: Uranium prices may change someday. How and when is hard to predict. But uranium ore is important, and could be critically important to our national security. Still, this is unlikely. The U.S. demand for uranium is not likely to increase anytime soon, as reactors like San Onofre in California close and other reactors—such as two to be built in Jenkinsville, South Carolina—are abandoned in mid-construction. Indeed, there is so little demand that most of the uranium now mined from southwest Utah is exported.

In such a case, where we are dealing with “might-be’s” instead of quantifiable benefits, we can turn to optimal decision theory to help us make wiser choices.

The optimal decision is the one that provides at least as good an outcome as all other available decision options. So if the costs of the “might-be’s” are not immediate, they receive little weight. In the case of Bears Ears, the optimal decision now is to leave well enough alone and to keep an eye on the “might-be’s” just in case.

In other words, if we don’t need to make a decision, the optimal action is to make contingency plans for the time when a decision must be made.

A secondary argument for opening Bears Ears to mining is that it takes time to open a mine and begin ore production. So if we need uranium for national security, we could be behind the production power curve. The answer to this is quite easy. If quick access to uranium is valuable, then instead of exporting it from the Daneros Mine to South Korea, the federal government should purchase and stockpile it. The reason why this is superior is that uranium seams play out, and if they are opened today they still might not be available when a national crisis requires them. Thus the uncertainty of the need for the strategic ore drives the decision to preserve Bears Ears.

There is also the issue of jobs. According to the Salt Lake Tribune, this amounts to less than 40 jobs. In an economy of 147 million jobs in the United States and 1.5 million in Utah, this is no more than spit in the ocean. So the strategic metal arguments are the ones to consider seriously, and they point to no economic alternatives superior to doing nothing with Bears Ears at the moment.

My guess is that other National Monuments would end up with a similar cost/benefit calculus. There may be legitimate arguments about future needs, either by those who will benefit from maintaining the park in perpetuity, or by those who see a national interest in exploiting resources from the park at some point in time. But the absolute wrong economic decision would be to change a “might-be” to a “must,” thereby creating a cost in the loss of the park.

That brings me back to my personal interests in parks and monuments. Of course, I don’t want to see even one-tenth of one acre given over to mining or development. But the point that should drive decision-making is not personal preference, but analysis of costs and benefits to society as a whole. And it’s clear that careful study and a willingness to admit what we don’t know can lead to a better solution for such places than short-term changes in policy to satisfy exploitation interests.

And if we don’t take care to respect the analysis, you might find yourself booking a tour of the unique architecture of Liberty Island Condos in the middle of Upper New York Bay some day.

The post The Trump Administration Wants Uranium Mining in Utah—but What About the Dinosaur Fossils? appeared first on Zócalo Public Square.

Sorry, Utah.

And apologies to the rest of the West. California’s epidemic shortage of housing hasn’t just sickened our own state—by driving up prices, forcing residents into rentals and onto the street, and putting a $140 billion annual drag on the Golden State’s economy. The disease is spreading to our neighbors, too.

Today, every significant city in the Western United States is experiencing a minor league version of the California housing crisis. Shortages are especially severe in Seattle, Portland, and Eugene, Oregon, and cities across the Mountain West are seeing big run-ups in home prices and rents; even in Boise, prices are increasing at a nearly 10 percent annual clip.

California’s housing crises and those of its neighbors share some of the same causes: lack of water sources to support development, shortages of skilled construction workers, and the rising price of increasingly scarce land near job centers. But our Western neighbors face an additional challenge: the influx of Californians unable to find housing in their own state.

I witnessed the spread of the California housing epidemic firsthand during a recent trip to Utah. There, the housing shortage, while less severe than in California, is considered historic. The Wasatch Front, which includes Salt Lake City and 80 percent of the state’s population, has seen record increases in single-family home prices and rents that far exceed the fast-growing region’s rising wages. The median home price in Utah is more than $264,000 (nearly $300,000 in the Salt Lake City area), which seems cheap by California standards but is more than 25 percent higher than the national average of $209,000.

For the first time since the 1970s, Utah, growing via births and incoming jobseekers, is adding more households than housing units. As a result, rates of homeownership are falling, homelessness is on the rise, and the Salt Lake City council has declared an affordable housing emergency. There are few homes for sale, even for those who can afford them; in the past five years, housing inventory has dropped 69 percent. The president of Salt Lake’s Board of Realtors has called this “the strongest seller’s market ever.”

Facing these challenges, Utah has a consolation: its housing shortage is not at the scale of California’s yet. But that is cold comfort. Leading Utahans are examining the California situation as an example of how to avoid a deeper crisis.

“California’s housing market can shed some light on our own,” said a recent housing assessment by Envision Utah, a non-profit planning and civic engagement organization. “Faced with rapid growth, many California communities, and even the state, imposed ever-more-stringent regulations designed to curb development, believing that if they slowed development it would put the brakes on growth.”

The trouble, said Envision Utah, was that, “California’s constraints didn’t slow growth, so demand for housing stayed high. Instead, those regulations simply diminished the supply, and we know what happens next.”

While Utahans know California’s problems, we Californians haven’t returned the favor. So late this spring, I went to Utah to see what lessons the Beehive State could offer Californians about housing. California has 13 times as many people as Utah, but the comparison is not completely outlandish. The states have two of America’s most diversified economies, and despite vast open lands, we’re among the most urbanized states in the country. Both states skew young (Utah is the youngest in the nation), our median household incomes are well above the national average, and we have similarly well-educated populations.

Most intriguingly, Utah and California are distinguished by their lack of housing. California is ranked 49th in the country in the number of housing units per person. Utah is 50th. But Utah, for its housing struggles, hasn’t had a shortage as deep or long-lasting as ours, or prices that exceed the national average by two-and-a-half times. Why?

One part of the answer might sound obvious: Utah doesn’t need as many housing units because it has the country’s largest families and households, a product of the prevalence of the Church of Latter Day Saints. That suggests one solution to the housing crisis—California could embrace Mormonism as its state religion—that I considered omitting from this column because it’s wildly impractical. But it’s no more farfetched than the 50-plus bills in our state legislature that offer minor or counter-productive changes to California’s housing markets.

Putting religion aside, the most serious difference between Utah and California housing involves local government. Utah is a place where state government defers to local government, and local communities retain control over their destiny. California is not.

It’s hard to exaggerate how little control California communities have over their fate. For 40 years, California government has been the site of a war between a state government that has centralized power at the expense of locals, with the help of voters. While housing is financed with money from all over the world, it is approved and built locally, so when we limit the power of local governments, one power we limit is the power to approve housing.

Today, California local communities are badly constrained from both the left and the right. Liberals enact and defend state environmental regulations that make it slow and costly to build housing. Conservatives enforce state limits on local taxes, especially Proposition 13, that create incentives that discourage the building of housing.

This state of affairs fuels NIMBYism. With their local representatives having relatively little power, local communities cling to the power they do have: saying no to change in their communities. California’s direct democracy allows communities to use local ballot initiatives to limit growth restrictions, no matter the statewide need for more housing.

Utah, a strait-laced place, has almost none of California’s local whips and chains—there are few local anti-growth restrictions, no state environmental law like California’s project-blocking CEQA, no Prop 13, and little NIMBYism. It takes years, even decades, for brave developers to navigate California’s anti-housing regime and build something. In Utah, housing comes together in a matter of months.

“We don’t have the problem you have with widespread anti-growth sentiment,” says Utah economist Robert Spendlove, a member of the state legislature.

That culture makes Utah likely to resolve its housing problems before they do more damage to its people and economy. There’s momentum to lift limits on housing density and streamline permitting processes to make them even quicker. Utah developers and builders are already adapting to the shortage by increasing production of more moderately priced homes and apartments.

In California, the response is very different. Gov. Jerry Brown and leading legislators want to impose even more rules on local governments, with the goal of forcing the construction of more housing. That might sound good in theory, but local governments are already weary of state mandates. Might new housing ones only worsen the state-local war and encourage more defiance and more NIMBYism?

Of course, it would be incredibly difficult to end California’s state-local war, restore more power to local government, and eliminate tax and regulatory limits that discourage housing. But how easy is it to live under a miserable housing shortage that ends up exporting our people—and our housing challenges—to states like Utah?

Failing to address our housing crisis is bad for California. And it isn’t very neighborly.

The post Will California’s Housing Shortage Epidemic Infect the Rest of the West? appeared first on Zócalo Public Square.

Thanks in part to the mommy lobby, the Utah State Legislature recently passed a bill to legalize the administration of Alepsia, a cannabis extract taken as oral droplets. Advocates celebrated earlier this week as Utah Governor Gary Herbert held a ceremonial public signing of the bill, ensuring the law will go into effect July 1. Alepsia contains ultra-low amounts (less than 0.3 percent) of tetrahydrocannabinol (THC), the psychoactive element in marijuana, but high amounts of cannabidiol (CBD), a chemical that has demonstrated potential for significant seizure control.

Amelia experienced her first seizure when she was only 4 months old. One day, as my mother was holding her, Amelia’s leg and arm on one side began jerking mildly. By age 1, she was experiencing hundreds of little seizures—myoclonic jerks lasting just a few seconds—each day. The seizures would cause her to fall on her bottom. Undeterred, she just got right back up, over and over again. We playfully started calling them her little booms. “Ah, boom”—there she goes again. I was 9 years old, and the only thing I could do for Amelia was construct a stuffed animal fort to cushion her falls. As we grew up, my younger brother and I became trained in caring for her more seriously, and our three youngest siblings pitched in where they could. Abby, the youngest, for instance, would sit next to Amelia and stroke her hair while she seized.

Amelia’s neurologist reassured us that kids often outgrow seizures, but it became clear early on that my sister was experiencing developmental delays. At age 2, Amelia had a full-body convulsion that lasted for 45 minutes. Realizing she wasn’t going to stop convulsing on her own, my parents rushed her to the hospital. A massive dose of Ativan stopped the seizure but sent her spiraling into respiratory arrest. With a respiratory therapist squeezing a bag, pumping oxygen into her lifeless lungs, my parents stood by, helpless. After 20 minutes, my terrified mother braved a question: “Do you ever get … tired?” He paused for a moment. “Yeah. Sometimes.” It was the wrong answer.

Treatments went nowhere. Amelia tried basically every FDA-approved anti-convulsive medication, and even surgery, with little success and often experienced major side effects. One drug did not let her sweat, causing her to overheat severely. Another triggered a life-threatening allergic reaction that required a 12-day hospital stay.

The only treatment that had any noticeable effect on her seizure control was a high-fat, high-protein regimen called the ketogenic diet. Amelia’s daily seizures fell from the hundreds to just a few dozen. But she stopped eating. After other medications failed, my parents eventually decided to give the diet another shot. Truth be told, I found this annoying. All the careful measuring and weighing that made the diet work sometimes made dinner late. Worse, to make Amelia feel like we were all in this together, my mom adapted her dishes for the whole family—which meant I had to eat quiche. Luckily for me (at least I selfishly thought back then), the diet did nothing for her seizures this time around, and I could go back to eating things like burgers and pizza.

Amelia’s seizures have evolved; she seldom convulses for more than a few minutes at a time now. But her developmental delays have become increasingly pronounced, and she has fleeting myoclonic jerks hundreds, even thousands of times a day. Soon those ubiquitous seizures garnered their own pet names: Little seizures became “blinkies,” and full-body ones were dubbed “big ones.” But what’s more difficult sometimes for my parents and me is her zombie-like post-convulsive state, in which, exhausted, she sleeps, drools, and then stares off into nothingness for an hour or two. In other words, she gets “zoney.” I once forgot the real names, telling a stranger that Amelia had “a bad spell in which she had several ‘big ones’ in a row and then was basically ‘zoney’ for two days.”

My parents have struggled mightily to fend off discouragement, mostly by engaging the enemy that is this disorder. My mother, who had planned on giving up her previous work to care for her young family, soon found herself mobilizing full-time on Amelia’s behalf. Exasperated by the lack of answers from doctors, she checked out every medical textbook on epilepsy in our local university library to become an expert on neurology. She diagnosed Amelia with Dravet syndrome three years before a real neurologist confirmed the diagnosis. My father supported her activism, using his vacation days to hold down the fort when she traveled to conferences a few times a year. After working with the Epilepsy Association of Utah for four years, my mom helped found a national nonprofit support group for other families like ours, Dravet.org.

But most of her time today, as it has been for the past 19 years, is spent taking care of Amelia’s needs—from administering rectal Valium (an emergency drug Amelia takes three times a day) and making sure she doesn’t fall too hard when she’s seizing (which has happened a number of times) to bathing and dressing her each day. Amelia will live under the care of parents or siblings for the rest of her life—we just have very little idea how long that might be. As the oldest sibling, I had to bring up the real possibility of eventually needing to care for Amelia before I could propose to my (now) wife.

It’s surreal how routine seizures have become for us after all these years. When Amelia has a convulsion in the tub now, instead of panicking, my mom just keeps bathing her. But if ubiquitous seizures have somewhat desensitized us, they have also opened our eyes to a different world. When a family from out of town with a child with disabilities sat in the pew behind us at church, the mother was touched when my brother and I actually talked to her son. My first job in college was working with adults with disabilities.

Occasionally Amelia has good days, too. She smiles and teases, and we catch fleeting glimpses of her radiant personality, of what might have been. She once appointed herself the language police of the household. “We don’t say ‘stupid’s or ‘shut up’s,” she would chastise her older brothers. She loves spinning, twirling, and being tossed upside down, so naturally, theme parks are her heaven. After so many seizure-related injuries, she rarely feels pain and has no fear. She thinks roller coasters are hysterical—and everyone loves sitting by her because she laughs the whole time.

Cannabis isn’t a substance my family—under just about any circumstances—would have an interest in legalizing, but what we call normal keeps changing. Alepsia has emerged as a source of legitimate hope for Amelia. Currently, 80 percent of children being treated with Alepsia in Colorado have experienced at least a 50 percent decline in seizures. Although still preliminary, those results vastly outstrip all the FDA-approved medications Amelia has tried. Other states are taking action, and that’s a good thing. While Alepsia won’t “save” Amelia, it might mean more days smiling and laughing, and fewer sitting on the couch drooling. And it might mean a new routine for my family—which would be more than enough, for us.

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